Piecing Together the Path

My Children

2010-06-18T19:36:00.003-05:00

I been very overdue for a picture of all 3 boys. The newest ones I had were over a year old, some I was using were almost 2 years old! They were all in the older boys room so I thought this was the time.

I can see most of everyones face, it will work

THIS is the TRUE image of my children!

Anyone want to guess how all of this went lol?

My Busy Boys

2010-06-02T14:57:00.003-05:00

I think they were trying to build something. I was watching, seeing what they would come up with. Once I started filming Andy was more fascinated with the camera than anything, I love the expressions on his face. He left all the work to little brother. They were having fun.

Play Ball!

2010-04-24T13:08:00.004-05:00

Yesterday I was watching the Brewer game on TV. Eric came down and seen it, picked up a baseball (from a toy, not a real one) started waiting for the pitcher to pitch and threw the ball to me. He don't have a soft throw, I got caught not ready a couple of times. He can now catch a ball too. Sometimes better than others, but I'm very impressed as this never happened last year. This kept us entertained for about an hour. The only reason I kept this game on because the Brewers were losing their tails. I don't believe how big Eric is getting. He's going to be 8 this summer! Wow! The camera flash can do some weird things to Eric's eyes. Yes, they do look a bit off in a few of these pictures, but that is all it is. He is ok :-)

In other news, Eric's IEP meeting was last week. All went well with that. With a little help from his therapist, I was able to give him a haircut. As usual, the job was not fun but it's done. We all came out unhurt, and he looks quite handsome :-) Can't ask for much better. He's also allowing me to give him eye drops when his allergies are acting up. This was totally unexpected, but I'm glad I didn't have to resort to oral medications and the fight, the side effects, ect. His 2nd ABA therapist is taking today off so after Andy is done we are going to the grocery store to get some fruit, ice cream, yogurt so I can start making smoothies for him . I continue to work with him on getting the saltine cracker in his hand. This could take a while. In the mean time he still needs his nutrition, and he takes it as liquid mostly, so one of my friends gave me this idea. I'm going to start with simple strawberry and banana, then in time starting to add some veggies. Since the feeding clinic psych people have run out of suggestions, it's time to get creative. We can still do it though!

Everyone Has an Opinion...

2010-04-24T11:55:00.007-05:00

Yesterday the teacher from Birth to 3 came to do Jon's last evaluation of him to prepare for the meeting with the school district 5/4. I hate these evals because the test kit is colorless and boring to say the least. Getting him to sit for this is usually a chore. He gave us a pleasant surprise by sitting down with the shape puzzle. He spent plenty of time looking at and lining up the pieces. Once he did decide to start doing it he knew where all the shapes went. Some it took him a bit to turn to put them in, but the job got done and I knew he could do it. Did the same thing with the blocks, had no interest in stacking. He was able to put a penny in a little piggy bank, and nest some cups with prompting. He sat pretty well too surprisingly. Looks good right???...

Jon turns 3 in June. You could expect a kid about 1 year old to do some of this stuff. The delays, everyone agrees on. Just because he's performing better than his brothers don't mean he is where he should be. The teacher pointed out there are still missing pieces. He don't play with toys appropriately. While he does interact more with others, it is just to get tickles, get high fives and count backwards. He stares off in space at times. There is the spinning, the hand flapping, ect. She pointed out to me when we were done he just ran aimlessly, he did not go to play with toys like most kids would. This was what the ABA providers said and more. What a way to rain on my parade! People wonder why I get confused and frustrated. Back in the days with Eric it was easy compared to this.

I've seen so much improvement and promising things from Jon. I don't want to lose focus on that. On the other hand, I want him to be able to get the help he needs as soon as possible. He's doing great with the preschool transition class he goes to for an hour and a half 2 days a week. His OT has provided us with a compression vest that he is wearing there. The teacher says it's making a world of difference for him as far as compliance, sitting, participating with the group and keeping him calm. Here he is with it, not happy at the time because it's really hard for me to put on him and I don't think I did it right.

As it stands right now he ages out of Birth to 3 on 6/6. They stop providing services at that point. The teachers and therapists in the school district aren't into working summers here, and of course there is the financial considerations to the suits. Most likely he won't start with them until September. Our Early Head Start family advocate is going to try to get him in the next transition class that will last until Aug. and she will continue to see him until he starts school. There are also playgroups they run I can take him to so he can get the social interaction, but I have to stay with him and would need care for the other boys. We also discussed the reality of the services he will get at school. I never had much issue with Eric, and everything worked out really nice for him. I can already see now with Andy it's not going to be so easy. This school year has left me less than impressed with what he's getting and the direction they want to go with him. Yes, both boys did grow once they started school, but it was the in home therapy where they made real progress. School districts are very limited as to what they can do. The problem is to get the in home help we are going to have to get another evaluation, possibly 2. We are going to have to stress the weaknesses, whereas I would rather focus on the positive. It's a shame that anyone has to go through all of this to get the help their kids need.

With all that said, my plan remains the same. I'm going to wait and see how he does in school. I don't want to jump to any conclusions, and I think it is possible he could flourish with the regular social interaction. These last few weeks have been long, busy, stressful and exhausting with all these appointments. Frankly, I've had enough with evaluations right now and I'm sure he has too. We are going to relax and enjoy this week with no major appointments.

Speech Eval Jon

2010-04-22T17:31:00.003-05:00

This morning Jon completed all 3 parts of the CHW Child Development evaluation. Today was with the speech pathologist and an audiologist for a hearing test. The hearing test went great. No problems there, wasn't expecting any though. Andy could not tolerate that booth where they did the test for nonverbal kids. Jon loved it. The SLP was the same one that evaluated Eric in 2005, just before Andy was born. It's nice having all that history and knowing how the process works. That made this appointment go much faster. We got in the room and immediately he went after a ring stacker. He was lining up the rings, not stacking them. But he was approaching both other adults in the room besides me. His eye contact was on. He was babbling away, said a few words. He was initiating interaction, and was letting the SLP handle the toys he was playing with. She said he was giving her clear messages with facial expressions, like when he wanted her to stop messing with the blocks he was playing with. While she was doing her testing it was amazing how much he could do. He responds to his name, the command come here. He can distinguish tone of voice and reacts appropriately. He is doing some imitating of sounds, songs that he hears regularly. With that, his results still show significant delays. He's in the 10-12 month range across the board. This really stinks. But, he is showing the pattern of speech development in children. He is heading in the right direction, even though he was very behind. This is very encouraging. If he was a one year old he would be doing very well and on track to talking soon. Whereas with Eric, his scores were all over the board showing no pattern, no direction. He's shown he is very responsive to singing and music. It was suggested I pick out 5 things that are important to him. Keep saying the word to him, linking the object to the word. Make up songs so it's fun and he remembers it. Once he can get that, he can expand more.

So now it's 3 for 3 saying they don't think Jon is autistic. At first, I wanted to believe that, but didn't. How could the very inappropriate play with toys and the unusual interactions with people be explained. Normally he gets so upset if someone tries to disturb his play, and gets very possessive with toys. Sometimes he is not as responsive and it seems he is in his own world. Eric and Andy's therapists have asked if I was going for more extensive autism testing and the lead said that their organization would most likely be working with Jon too. They know what they are talking about right? They are experts in this field, but this is their business and of course you want to bring it in. He shown some of his aimless running and wandering today, as he did in the waiting room for both other appointments and some with the psychologist. Nobody thought much of it. He is much more interested in people than his brothers ever were. He makes good eye contact much of the time. He is making much more of an effort to talk and be sociable than Eric or Andy did at this age. The way it was explained to me today made me feel more confident. I feel that I can hold on to this encouraging news, with very little question. Maybe it's just me needing to let go of the stress, but I feel lighter now. The plan is to see how he does once he starts school in the fall. Continue with the suggestions of this SLP, EIP and the school district to keep him on track. If there are issues that come up, or the signs become more apparent I will pursue further evaluation at that point.

Feeding Update for Eric

2010-04-20T14:47:00.002-05:00

His appointment at the feeding clinic was last Thursday. I've been nervous about this appointment and dreading it for a while. He's gone backwards, and has lost a lot of the progress he's made. In his head the only thing that is food is his cheerios, and drink is his pediasure/CIB or fruit juice in his "orange cup" (that's what he calls it, it's that old baby nuby cup). He is so rigid and set in his ways, and at this age it's hard to change. For a while he was doing good when his therapists were here, but would not do anything for me. Now it's a fight even with the therapists, the ones that are still doing this. Some of them are getting discouraged. My ability to work with him has been limited due to having surgery, then other health issues to deal with and also having to work with his 2 brothers that have special needs also. My follow through needs to improve no matter. I feel guilty about this, but I can't change it now. We must move forward.

The appointment started of with some good news, he has gained 6 pounds since his last visit. That's awesome, he needed that. He still won't allow them to get his height. There was a lady who hasn't worked with Eric before doing that and I kept trying to tell her he didn't like that thing coming down on his head and won't let her do it. She finally talked to the team and was told no height needed and we were brought to a room. The psychologist came in quietly while I was talking to the nutritionist. Then we told Dr. F what was going on. She told me that she had to talk to her team of psychologists because she has nothing to suggest at this point. She is going to talk to her team about putting together a plan that can be done inpatient with him, but it's unknown if this can be fixed in 2 weeks. I highly doubt it. I was told otherwise that he could be sent out of state if they can't do anything for him. Problem with that is WI medicaid most likely won't cover that. Never mind how hard either of these would be on him, and the rest of the family. Care for the other kids, I wouldn't know where to begin. So doing this at home is really much more desired, but there are limits. You can't just take away what he will eat and drink because he will not give in, he will get sick. Inpatient treatment is a hellish way of doing this. It's so discouraging that they are just throwing their hands up in the air.

Here's the plan for now. We are going to work really hard on him eating his cheerios with a spoon. Once he has that down we are going to start adding very small amounts of milk, and work with that until he can tolerate it. I've also bought other flavors of cheerios that I will give him to get used to new tastes. A wonderful lady I met on Twitter through The Coffee Klatch, and am also talking to on Facebook now suggested that I try one food, putting the food on her plate, touching the food, then bringing it to her mouth, and eventually taking a bite. This could take weeks for one food. I am starting with a saltine cracker. So far not going too good but keeping on. This child has also had a wonderful OT working with her, helping her make so much progress with eating. Eric has OT at school, but it's no more than an hour a week (Andy's is 1 hour a MONTH!) and they still have to work on writing and school related stuff. His school speech therapist does what she can. The ABA therapists try, but they and the psych doctors at the clinic are all about behavioral training. Yes, he needs that but I think sensory issues are just as much of a problem but not being addressed. Very limited time and money don't help. So we do what we can.

God I would give anything for these boys to eat. It comes naturally to almost everyone, why can't it for them? This is so frustrating. It's been hard for me to find the words to get this out. There are so few people that deal with this type of thing and can even begin to understand this. I feel better now that I finally have. From here, we can hope something works for Eric.

I Love Someone With Autism

2010-04-06T19:26:00.002-05:00

This video is the hard work of Mr. John LeSieur, President and CEO of People CD and the creator of the ZAC Browser for autistic children. One of his friends on Facebook came up with this idea and he was going to have it done for World Autism Day on April 2nd. It was so big and great that it needed an extra day, the wait was totally worth it. I sent pictures of Andy and Eric and they are in there. Thank you very much John, and everyone that worked so hard on this, and to all the parents that sent pictures of their children to share in this. The link goes to Mr. LeSieur's Facebook fan page where the video is. There is also an HD version that you can download and play full screen if you choose.

My Cool Dude

2010-04-06T19:01:00.003-05:00

He put the batting helmet on himself. The sunglasses he let me put on him and he kept them on for a couple of minutes. WOW!!!!!!!!

One Step Closer...

2010-03-28T19:33:00.004-05:00

This time I was able to get the picture while he was still holding it. He is really talking in it. There is nobody on the other end of the line. I was doing the talking instead. This is a real phone, but it's only plugged in to electricity, not the phone line. The real phone here is a cell phone. With the right person I think he could handle himself in a short phone call.

Eric has gotten so much better at expressing himself verbally. This morning before therapy I had to get him dressed. He wanted to eat, when I told him he needed to get dressed first his response: "I'm mad!" and the tone of voice to match. Later he told his therapist in no uncertain terms to "Go away!". Wow,I thought I had a little boy, not a teenager! He is also learning to use the words yes and no. This was hard for him at first but he's getting better. The things taken for granted by most of us...

The long days have been hard on him and it's been showing in his behavior and moods. It's times like this when I know we are doing the right thing and this is worth it.

The Life That's Chosen Me (written by Karen Taylor-Good and Lisa Aschmann)

2010-03-28T13:06:00.001-05:00

I'll Take Being Pulled Along for This!

2010-03-26T20:04:00.002-05:00

After therapy Andy came up to me pulling my hand and he said "GO GO GO GO GO" all the way to the fridge. I asked him if he wanted milk. He said "YEAH YEAH YEAH YEAH YEAH!" So by all means he got his milk, and lots of praise and tickles. Wonderful moment!

Jon's CHW Evaluations Part 1 and 2

2010-03-25T17:34:00.004-05:00

Yesterday was his appointment with the psychologist. We didn't leave soon enough so I was rushed. I forgot the stroller, so he had to walk with me. This was not starting out well, and he was letting everyone that could hear know that. I had to carry him in. Thankfully the check in was very simple and only lasted a minute or so. He sat in my lap cuddled up to me. The doctor came out and introduced himself. Jon was still clinging to me. This lasted through the interview with me. I was worried, but not surprised. Then the doctor took out bubbles and started blowing. That peaked his interest. A smile, then a laugh soon followed. He left my lap and started popping bubbles. He was babbling away. He came up to the resident pediatrician, looked at her, touched her arm and smiled. He did the same to the psychologist. They would call his name, he looked at them. His eye contact was really on. He played with the toys that were in the test kit. Yes, these were toys for babies and kids about 1 year old, but he did what the doctor wanted with them. Transitions were smooth. His toy fumbling tendencies must have taken the day off. He did line up blocks for a bit, but with generous prompting he started stacking them himself. The doctor was allowed to touch the toys he played with, lucky guy. There was a very cute 33 month old child in that room, you wouldn't think anything different if it wasn't for the lack of speech. Jon, Mr. Charming was in the building. That was great but...

Maybe he just ignores me when he's busy doing his thing. If he likes you enough, he may share his toys and allow others to try different things with him, otherwise he gets possessive, set in his ways and will only do what he wants. Dare I look at or touch the blocks he is lining up or the pegs he is fumbling. His sensory issues must be a figment of my imagination. I guess I'm just a liar and his therapists and Early Head Start worker didn't really see these behaviors I've described even though they have them written in their reports. Just like when I know something is wrong with my car and bring it to the mechanic just to get a piece of paper saying that the problem can't be duplicated along with a sizable bill. That didn't fix my car, just as this didn't help my son.

We all have our days. Jon just happened to be a good mood once he was able to relax there. This was an one hour plus appointment. I am with him all the time. The doctor really knows what he is doing with these kids which helped. The forces lined up properly and the toddler I brought was on his best behavior. I will admit that Jon makes much more effort to be social and interact with others, and talk than his brothers did at this age. His eye contact is better, and he scores higher on cognitive testing. With 2 children on the spectrum and already diagnosed without much dispute, it's pretty natural to think that if my other child was showing some of the same signs, that it's quite likely he is autistic too. That is all I know. I could be too quick to jump on the assumption of autism with Jon. That would be great, but it concerns me that he won't get the help that I know he needs. It also makes me wonder if I am doing something wrong. It's hard to know what to think.

He does have extensive developmental delays. The toys he was playing with were suitable for a 1 year old and he was interacting with them in that way. He turns 3 in a little over 2 months. The psychologist thinks he may be to sociable to qualify for an autism diagnosis. We shall see. Today was the physical exam. He walked in there real nice, was playing with the toys in his own way and was happy and friendly up until the exam. The only concern this doctor brought up was the possible genetic connection with 3 brothers all having similar developmental delays. We now wait on insurance to decide whether they will approve the testing.

There Can Be Too Much of a Good Thing...

2010-03-22T13:23:00.002-05:00

Even if it is therapy to help my kids. Andy’s therapy hours are ramping up quickly. He is doing awesome. This is great but our days are long.

The boys are getting funding from the state of WI to cover 20-35 hours a week of ABA based therapy. This intensive phase lasts 3 years. In order to stay in the program, they must get a minimum of 20 hours a week; otherwise they are dropped and can’t return. Illness, emergency, , or an occasional vacation is OK. This can’t be done half heartedly. It’s all or nothing.

Andy’s therapists come from 12-3 pm, and then Eric’s come in from 3:30 to 6:30, with an overlap of both boys on Saturday. Eric has one session every Sunday, and every other Sunday another therapist comes later in the afternoon for 3 hours, so from 10-4:30 he has therapy. In order for him to get his required hours since he’s in school full day, the Sunday is a must :-( . I understand most kids have homework, and parents don’t get time off. Most adults would not go for having to work 7 days a week, and still have to work when you get home. I have to ask this from a 7 year old! Andy’s school is half days 4 days a week. Kids need time to play and rest. This strain has really shown in their behavior. They are very moody and irritable; the aggressive behavior has reared its ugly head. Their sleep has been very poor; 2-3 hour a night. These boys having such a hard time along with lack of sleep, very little adult contact, time out of the house, and physical health issues sent my emotions and mental health downhill. Eric’s bus broke down and he came home late Friday. This bus thing, then the therapist here right when he got home had him very upset. The tantrums were very violent. While I was waiting for the bus the neighbor kids were outside playing with friends, in their scout and sport uniforms and I am so wishing this could be my boys, my life. It hurt, bad. All of this did me in emotionally. Something had to be done so…

I cancelled all therapy last weekend. The boys and I just relaxed, let go of stress as much as reasonably possible. My boys are much happier with no major tantrums. Their sleep is back to reasonable levels. I'm finally starting to feel better. I’m ready for all the evals, meetings, and appointments for the kids coming next month. They are happier and relaxed. It’s time to return to reality. There will be more long days being cooped up to face the next months. During the summer there’s no therapy on weekends. Jon will be going to school this fall. I'm hoping it will be the same time as Andy. If not, it's another year. We will get through, one day at a time. We will take what we have given to us. No matter if it's a bit cold out or it isn't much time we will get outside some. At times I felt selfish and overwhelmed and wanted this all to stop. I need to care for myself to care for my boys. We all need breaks. It is OK, and necessary to do this when needed.

Off To A Good Start

2010-03-10T17:35:00.005-06:00

Andy's team of line therapists have started their training with him. They worked with him for 2 hours today and handled it very well. There was a meltdown when I brought out the vacuum cleaner. He ran upstairs to his room and was crying for a good 10 minutes. I printed out the picture of the vacuum I posted on here. At first he kept throwing it and turning it over, eventually he started looking but was never interested. The senior therapist suggested finding videos on YouTube with vacuum cleaners. I was able to find a few with young kids using vacuum cleaners, some of these kids really love these machines and even collect them! Here is a great one. Andy usually loves YouTube but he would look only briefly at the vacuums. He didn't melt down, but he did try to avoid them. So that's the plan of attack for this. This was also the last of the tears.

We are starting to introduce him to a sippy cup and get him to hold and put a toothbrush in his mouth on his own. Was he thrilled about this, nope. He runs away from the sippy cup. It took forever to get him to take the tooth brush. The following pictures will tell the story.

Holding it empty.

Ready to go with all your equipment Andy?

Took some convincing to get that toothbrush anywhere near his mouth.

Holding it with milk and laughing!!!

Score!!! Why can't I get you to do that???

He would run away from the cup, put it down a second after he took it in his hand, he would push away. There were no tears or tantrums. He didn't even get upset, just shown he didn't want it in his way. But he did hold it. It was never more than for about 30 seconds, but we will take it. He has NEVER taken a tooth brush and put it in his mouth by himself for me. My daily attempt to clean his teeth is not something anyone looks forward to. What's up with that Andy? We have the evidence now, so no excuses. When he asks for food he is saying "eat" very clearly without prompting. He said "up" to go upstairs. Eric's favorite word also came out of his little mouth, "tickle".

This is going much better than I expected it to. They have not gone hard core yet, but they are getting down to business. There are solid plans in place for him from the get go. Compared to how it was when Eric first started, it's very impressive. Andy has been exposed to Eric's therapy for over a year so that may be why he's been so cooperative? I'm sure he'll have his moments. This is great to see. The schedule, well it's going to be quite busy once both boys are at full hours. Since this is a home based program, that's where we are going to be, a lot. I also have to work with the boys on everything the therapists are doing. This is a big time commitment. There is only one of me. Once the summer comes we should have weekends off and in the fall all 3 boys will be in school. So it's going to be a few months we are going to have to hold on and do the best we can. It's all worth it in the end.

The Dreaded...

2010-03-07T11:10:00.003-06:00

VACUUM CLEANER!

Poor Andy is terrified of the vacuum cleaner. He starts crying inconsolably and runs at the sight of the machine. If he hears it going he curls up in a ball and screams. Quite the extreme reaction. Andy's therapy team is now together. Hopefully they can start training tomorrow and working with him. This is one of the big things on his plan, desensitizing him from the vacuum. Here is how we are going to start...

We are going to start with a picture of it. Then it will be having it near and looking at it. In time, we get to turning it on. Slow process. Even if he gets to a point where he runs off with his fingers in his ears like Eric, at least that's reasonable. I don't love the sound of these machines either, but it don't get me out of using it! So this is the new home for my vacuum for a while.

Caught Again!

2010-03-07T10:58:00.003-06:00

Caught you red handed with those yummy jackets Jon! He will chew and chew the rough side of the velcro for a good amount of time, this is a regular sight around here. This picture dont give this justice. He chomps like crazy on the velcro straps around the cuffs of these jackets, any velcro that exsists on these things. God help us if one of his brothers have the nerve to go out and leave for school or something and need their jacket! Yesterday during nap I seen him chewing on a strip of velcro on Andy's jacket (the yellow one) in his sleep! Don't think we want to go there. Can we say addiction? Gotta love these oral sensory issues. I'm thinking of buying some velcro and sewing it to some fabric so hopefully he will chew that instead of his brothers jackets, velcro on shoes, ect. Don't know of anything else that would feel similar but would be more appropriate.

One Little Word...

2010-03-06T07:45:00.003-06:00

This was the first good note I've gotten home from school in months. Yes, this was a few weeks ago, I'm a little behind here with the blog. But anyway, this is from a child that was mute for over 2 years, at least. "Eat" is the first word that Andy has learned to use with meaning. Yesterday was parent teacher conferences for both boys. Andy's teacher told me about one of his classmates coming up to the teacher all excited because he said that one word. This little girl was just as excited as the teacher and I, and was the first thing she told her mom when she came to pick her up!!! :-) These are awesome folks Andy is with for 4 mornings a week. Just a few months ago he was having such a difficult time with school. That has very much improved in the last month or so. The hope is that when more communication comes less frustration and tantrums and outbursts. He now points to a loaf of bread and says eat every time he wants some. It's an awesome start Andy!

Instruction, Orders and Independant Functioning

2010-02-22T17:23:00.002-06:00

For a long time if I asked any of my kids to do something simple like "come here" or "get your coat" they looked at me with a blank face or just continued on with what they were doing without a care. Since Eric has started therapy he can identify so many more familiar things in his life and learning so many words. It's all starting to link together. Yesterday he asked me for cheerios. The box was way out of my reach. I asked him to give the box to me. He did it without hesitation. At first you would get these types of responses if and only if you used the exact words that were taught to him. Now he is much more flexible. He will respond to "bring me your shoes" or "go get your shoes". It has gone to this level within the last few weeks.

While he is getting good at taking orders, he's even better at dishing them out! He's been demanding to go outside (when it's a little too cold and late), that I tie, fix or take off his shoes when they are wet from the snow, turn off the porch light (yes, his feet/shoes and lights are still a big thing for him), to take away the spoons and the cups he uses during therapy, go potty, let's go! He is very clear in what he wants. It's great to hear this, even though sometimes I wonder if a monster has been created :-) He is now for the most part dressing himself, he insists on zipping his own jacket. He's mastered turning on the TV, adjusting the volume (way too loud!), getting ready and washing himself in the bath. So many things I thought I would take for granted as a parent. Guess it don't come as naturally as I thought it would. My big guy is growing up.

Welcome and Introducing New Friends

2010-02-22T16:27:00.002-06:00

Anyone who visits here regularly may have noticed I have a lot more links at the side of my blog. Look out, I've invaded Twitter! I've actually had an account there for quite a while but haven't really used it much until last month. I was looking on there for something and ran across The Coffee Klatch. This is a chat that takes place on Twitter weekday mornings from 9:00 until 11:00 EST (it's 8 am-10 am here) for parents of special need children. There are many parents here with children on the autism spectrum, this is open to parents of children with any type of special needs. There are topics scheduled for each hour long segment of the meeting. There are many special guest appearances. These are listed on the Twitter page and the Facebook group page for The Coffee Klatch I've met so many wonderful people on here. I can't get on every morning but they are always so welcoming to everyone that joins. I was going to list everyone individually here, but I would forget someone. I am very happy you have come here to join me and my boys on here. The links are on the blog sidebar. Feel free to visit these blogs and websites.

I've been introduced to many great products through this chat. I have a new list of links for sites that provide products and services that can benefit anyone on the autism spectrum and their families. I have done business with many of these folks, others have very strong endorsements from friends and others I trust. Included now is a site that sells autism awareness novelty items, a great place to buy weighted blankets, a wonderful lady that sells chewelry, seamless clothing, a couple of sites that have books, CDs, and DVDs to help with social situations and anxiety. These are just some examples. If your business or website provides any of these kinds of goods or services and you want it listed on my site please contact me.

Your Day Has Come Andy!

2010-02-18T18:38:00.004-06:00

Yesterday we met with your new senior therapist and supervisor, did all the paperwork, put together your own binder, and got plenty of attention and time to play with your new friends. Your therapy schedule should be in the mail tomorrow, and the line therapists will be trained and assessments done starting Monday! We can't wait. He has 3 months like Eric to get up to state mandated hours so it will start slow for them to get used to him, and for him to get used to them and the therapy. So far he is loving it. We will see what happens once the real work starts... It's all going to be worth it Andy.

Finally got a recent photo of Andy. Still waiting on a schedule for him. Looks like we have good plans written out.

Ya talkin about me???

Andy, my man of many faces :-)

Never Thought I'd See The Day...

2010-01-29T20:22:00.003-06:00

I heard a bunch of jabbering going on in the living room and figured Eric saw something out the window. Then I looked closer and saw him with a toy phone that we've had for years. Jon must have dug it up from the toy box. Then I seen the handset to Eric's ear and he was jabbering away. I honestly don't know what he was saying or who he was talking to. He was too busy talking to tell me that :-D I run to get the camera then I heard him say bye and hung up. Then he saw me with the camera so of course he wouldn't pick it up and talk again. He just held the toy and gave me a stunned look. SOMEBODY taught him how a phone works. It maybe could be me, but I'm really not a phone kind of girl. Talking on the phone makes me nervous and I try to avoid it if I can. I'll gladly get on the phone if it means talking to Eric, or any of my sons for that matter! :-) The pretend play I've been seeing from Eric is beyond amazing!!! He is understanding what happens and how the world works. He still has a quite a way to go and his verbal communication needs to expand and improve to have real conversations. But this is so full of HOPE! All this hard work is paying off. Eric always seems to pick the days that I really need something to cheer me up to do things like this. He really knows how to make my day. I could only get the one picture with him holding the toy phone with that look on his face since he wouldn't do it any more once he seen the camera. So you'll have to take my word for the rest, but that's easy enough to do.

One step closer

2010-01-28T20:39:00.003-06:00

Nobody said he had to be happy about it...He's holding the spoon with the applesauce, now to slowly guide it to his mouth. I got 2 notes from school that he tried vanilla pudding. A $1 snack pack was bought. So far it's a no go at home, but there is a little less resistance than with the applesauce. He's been cooperating better lately. He fights a lot more for me than he does the therapists. I've also found cutting the CIB down has been much easier than I thought it would be. He's been drinking pediasure, yogurt,babyfood and milk mixes and fruit juice. He's still allowed one CIB. Again, there was resistance at first but now this is satisfying him. In April we will see the results of the blood tests and his weight and know whether this is working. The hardest part of all of this is dealing with the resistance, crying, tantrums and everything else that comes with this. In order to help him, the therapists and I need for him to comply. This isn't about making him happy. We try to make this as fun and pleasant as possible, but we can't give in. For me this is much harder. He gives me a real hard time where with the therapists he's good. We'll get there, just keep doing what we are.

Jon's evals

2010-01-28T17:31:00.002-06:00

As long as everything goes as planned and everyone is there that's supposed to be there here is the new schedule:
Feb. 18 appointment #1 with psychologist (which was supposed to be today, but he left by the time we got there!)
March 24 testing with psychologist
March 25 appointment with developmental pediatrician
April 15 eval with speech language pathologist
After all of that is a team meeting which for the last 2 kids was quite useless. The reports will help if we need to go to the neuropsychologist for the state approved testing for an official autism diagnosis. Tomorrow is the one year mark from when Andy got that diagnosis. We shall see what this summer and fall bring for Jon.

So Cool to See What They Really Understand

2010-01-09T09:01:00.003-06:00

Maybe I'm making too big of a deal over this. But this is the first time I ever seen any of my kids do something like this. Plus I was really in a crappy mood all day and this was really the bright spot for me. I went upstairs and saw Eric with a Little People fireman and this toy safari car. He was "walking" this figurine around. Then I seen him open the door to the toy truck. He then put the Little People guy in the seat, closed the door and they took off. He pushed it for a while, then repeat. This is the first time I've ever seen anything resembling pretend play from any of these boys. Yes, this is simple but it was so cool to see he was getting this concept. Just like when I seen him playing a car racing game he was stopping at a red light. Ok, that is not good for a race but he knew that red light means stop.

Of course when I try to get pictures of him he don't do as much and needs more prompting. I was able to get a couple with him putting the guy in the truck. He was really having fun with this. That was so nice to see.

Andy's Time is Coming

2010-01-08T14:18:00.003-06:00

His recertification for the state funding waiver is Jan. 20. This is to determine if he still qualifies for these services. I see no problem with that. The county caseworker told me his funding should be in next month and he will start therapy in late Feb to early March. Yes, it's going to be very busy here but Andy really needs all the help he can get. I'm glad this can come earlier for him than it did Eric.

Feeding Clinic Lab Updates

2010-01-06T16:33:00.004-06:00

I'm going to start with the good news. My main worries about Eric have been settled. The diabetes concerns have been put to rest thank God. All his labs came out good, except that his Vitamin A levels are way too high.

At first I'm thinking, what's the big deal? Like anything in life, too much is no good. If nothing is done about this all this Vitamin A could be harmful to his liver. The Carnation Instant Breakfast he drinks that provides most of his calories an nutrients is LOADED with Vitamin A! Of course the milk has it too. He will drink fruit juice and water, but the only solid food he will eat is Cheerios. So we are going to have to get creative to make up for what he is losing from the CIB. He is now allowed only 1 packet a day. He will be getting more juice (diluted) and water, and I will have to mix baby food (no orange)in the milk he does drink and flavor it. The nutritionist is looking for a vitamin supplement without Vitamin A that I could crush and put in his drink. He may have to go back on pediasure, at least 1 a day. From here we really have to start pushing the spoon. The GI doctor wants more blood work done in 3 months to check the Vitamin A levels and his liver function. So far his liver function is fine, but this can't go on like this according to what I heard today. The drinks I already have to make up for him are something else. Here is the plan as we went before this phone call with how his liquid nutrion was mixed, cheerios as he wants them are included:

Breakfast 7 oz milk 1 pkg CIB 4 oz yogurt and 1 tsp corn or canola oil
School 7 oz milk 1 pkg CIB
After School
7 oz milk, 1/2 pkg CIB with 1 jar of baby food fruit or green vegetable and 1 tsp corn or canola oil (he got 2 of these)
diluted fruit juice in between.

Yummy stuff hey? Now we have to cut the CIB. Maybe with adding the pediasure this won't be so nasty? What I wouldn't give for this poor boy to be able to eat normally right now. He don't know what he's missing. It's such a slow process in getting him to tolerate the simplest things. They are concerned about weight loss, so we have to make up for this. This is going to be interesting...

Eric Therapy and Other Updates

2010-01-06T13:42:00.002-06:00

During the holiday break Eric's therapy was ramped up. There were days where he had 3 therapists coming and 8 hours of therapy. Some days he handled this better than others. That's a lot of work for a 7 year old child. I had big plans of finishing up a few things we are so close on since we had 2 weeks. None of it came to be. Stuff happened. Life happened. That's ok, we will get back on track.

Verbally, Eric continues to amaze me. He's become a parrot. Repeats a lot of what I say. My favorite is "down Jon Jon" when his baby brother is climbing. When I was doing his hair cut "Please stop!" When trying to zip his jacket "let go!". Turning on the water to wash his hands "Too cold!" This is just a few examples. They are now teaching him how personal information such as phone number, address, names of everyone in the family (meaning my actual name) and how to respond to those requests. He's already mastered his first, middle and last name. He can identify his brothers, but sometimes calls Andy Jon Jon, although I think he knows the difference, it's just more fun to say :-) He can spell his first and last name also. While on the vantage I've heard him spell other simple words like ball, car, dog, red, ect. To answer the next question, yes he can read. I have no idea at what level, but they, and I have given him various preschool books and he's been able to follow with his finger and read most of the words. You wouldn't think it by looking at him. It goes to show how much they really know and understand, but just can't effectively communicate.

There is a wonderful line therapist working with Eric that I would love to keep here at home with me. She has been working with him on dealing with emotions and expressing them, sharing and turn taking with his brothers. She is teaching him how to breathe to calm down and deal with stress and anxiety. He is now learning to attach words to his emotions. So instead of crying, throwing stuff, stomping, ect we are asking him if he is mad and keep on him until he expresses it in words. When he needs to blow off steam we let him bounce on the exercise ball, or squeeze him really tight. At the end of the session Eric wants the therapist gone, like right that second. This therapist hangs around, in his sight until he calms himself down. It works, eventually. Eric has been asking for hugs for a while now, and knows what the word means. Before he was just saying it, leaning into me waiting for me to hug him. Last night he squeezed me back. That was the most awesome feeling! I was crying from that one. He is now letting me initiate the hugs while before it was on his terms only.

The feeding and the cup, that's more difficult. We progress and get so close, but can't finish it off. We will get there. He is finally decided to sit on the toilet yesterday and went, so hopefully we can make up for lost ground on that.

Andy is doing much better with going back to school than I thought he would. He's had some difficulties with behavior and coping with the enviornment there for the last couple of months. He seemed much happier at home, at least for the first week of vacation. So far he's been happy to go on the bus and there have been no reports of any problems. His recertification for elegibility for the waiver will be this month. As far as I know, he is still on track to get the funding for his in home therapy in March. I will find out more once we have the recertification meeting. I'm just waiting for her to call back to schedule that. I'm also filling out paperwork for him to be evaluated at the feeding clinic.

Jon is a very busy, active little boy. He climbs EVERYTHING! The boy has no fear. I've been hearing words come out of his little mouth, but they are scattered and mixed in with a lot of jibberish. This looks promising, compared to either of his brothers at this age. But from the last I've heard he is still VERY delayed, like at the early infant to one year range. He has progressed with the occupational therapist with the small motor stuff. His play skills are still behind, and it's really hard to see where he is cognitively. I'm starting to notice many more oral and auditory sensory issues with him. He always wants to chew the velcro, usually on shoes or on his or Eric's coat. He's getting pickier about food. He really craves bouncing, swinging and rocking motions. Ordinary sounds like opening a cereal box or bag of chips, the vacuum, someone talking even a little too loud (not yelling), or coughing will scare him and he is a screaming mess for a while. I will admit I have auditory sensory issues myself, but not to this extent. His speech and occupational therapist will discuss their evals with me next week and the 6 month IFSP meeting is January 19th. We shall see what happens there. I am also trying to track down all the paperwork I filled out for the Child Development Center at Children's Hospital so he can get his first eval there. Still waiting for a call back from them too. At this point I'm ready for anything. We've survived everything thrown at us already.

Stand

2010-01-05T19:27:00.002-06:00

I LOVE this song. It so speaks to me with what I've had to face with the boys. This is a video with the lyrics of the song Stand by Rascal Flatts

Last month I was bent way past breaking. I could take no more. I am now ready to Stand!

Eric and Andy With the Vantage

2010-01-05T16:45:00.006-06:00

The Vantage Lite, the electronic communication device Eric uses, is used during school and during therapy. Eric took much more interest in it while he was on a trial of one at school, now that he has his own not so much. He's learned to say so much verbally now, but this machine did help give him a jump start. Andy is using a very simple device like this at school, and may very well get his own Vantage Lite or something similar in time. He loves the machine and I think this would really benefit him.

Andy is having a good ol' time learning how this thing works. He's figured out how to use a computer quite well, so I'm thinking he will be better than me on this thing in no time.

Here's what he was saying. We'll get there...

Eric working with it during one of his therapy sessions. They had him typing his name on there. He can spell his first name quite easily, his last name he needed some help. This machine can do so much! It can talk for you, you can type on it, you can go on the Internet with it and use it as a computer. It's amazing. I went for a 6 hour training on this last summer and I honestly don't remember much of any of it! I'm very surprised how fast these boys are picking up on this.

What Won't Entertain My Kids...

2010-01-04T19:06:00.003-06:00

Any time Andy sees the popcorn machine he comes running. He LOVES to watch this go. To him this is the best show on earth! Guess I'll be eating a lot of popcorn...
Once it's done he goes into the bowl, grabs some and tries to feed it to me! So cute :-) I wish he would eat it himself, but I'll take touching it!

Scroll down to the bottom of the blog

2010-01-04T19:03:00.001-06:00

I found this poem that is just awesome. The only way I could get it is as a large graphic. The bottom was the only place it would fit.

Feeding Clinic

2010-01-04T17:10:00.003-06:00

This is another post I've been putting off. But it does bring up some important issues and someone may be interested so I'm writing this. This is not a Rah Rah post, so if you want that please skip this one. This is also very long. With that, here goes...

The appointment was on Dec. 23rd early morning. Just what I want to do on a day in the middle of Christmas vacation, get up at 6 am and go out into the cold to go to a hospital for a dr. appointment. The senior therapist from the ABA organization also attended this appointment. I made up 2 straw cups of CIB for this appointment, but of course forgot to pick them up and bring them with. There was very little wait this time. Eric did AWESOME with standing on the scale to get his weight. The height, that's another story. They have this thing that comes down on the child's head and he HATES that. Not that I blame him, but they are careful bud. This time they insisted on getting it so they would have to do it in the room by standing him at the wall, making a mark and using a tape measure. We get settled in a room, and the nurse comes in soon after. She asks the usual questions. I bring up my concerns about how much he is drinking, and urinating and the fact that his urine is very dark and smells like sugar. I don't want to be paranoid, but his dad is a type 1 diabetic, so it's a possible concern. Nurse is concerned, along with the dietician. He gained 2 lbs since the summer, but they were not happy with that. His weight is not keeping up with his height, and for how much he is consuming they would like him to be gaining more. They try to get a hold of the GI doctor that was there today so labs can be ordered. Gee, that's something to look forward to!

The psychologist comes in and is filled in on all the medical and nutritional information. Then she talks to me about how he's been doing with the cups, spoons ect. I tell her how I get to a point and no progress is made, and how he don't drink enough from the straw cup to keep properly hydrated and healthy. Then she asked the senior therapist what she was doing, and how she thought he was progressing. Then she asked how long that the therapy organization would be working with him, we told her 3 years. Then she asked the senior if any long range planning has been discussed for Eric. Huh? She then informed us that Eric most likely won't be able to function on his own as an adult, and the bigger he gets, the harder it's going to be to handle him. Then asked if we ever talked about or looked into a residential placement for him. Ummmm...OK. That was the LAST thing I was expecting to be brought up for discussion. Nice thing to talk about right before Christmas! Now I understand that Eric may not be able to live independently as an adult, and that he may need a lot of help. I'm ready if he has to live with me as long as I'm around, or that a residential facility may be necessary in time. The services in this state are great, but I have no idea what's going to happen once they turn 18. I'm not in denial, and know that in time these things may need to be addressed. But to bring it up like this? Eric has made great improvements since starting the in home ABA therapy. Nobody knows what the future will hold. He may get to a point where he may need minimal help, or that I can care for him as long as needed. Right; now I'm his mom, I am caring for him and he is thriving. Yes, it's slow progress but he's much better off than he was before. The senior said this stuff was discussed during year 3 of the intensive phase therapy (at the end). God this conversation upset me. It came across like I can't take proper care of him. This is not a subject to be taken lightly, just not something I wanted to deal with right at that time.

On to the lab. The senior therapist was staying with me and Eric through all of this, which was very nice of her and very appreciated. We had to get both blood and a urine sample from him. By this time we tried a bag, but he fought that so hard and would not let us put it on. Then we sat in the bathroom for about 15 min trying to see if he would go in a cup, didn't happen. So we got a hat, cup and order to try to do this at home. Anyhow, we sign in. The therapist forgot something at the GI clinic, so she had to go back there. Of course while she was gone we were called back for the blood draw. There was one lady there and she asked if it would be easiest if I held him in the chair or if he laid on a table. I said in my lap. Eric plopped down on the ground and dead weighted himself. He wasn't moving. The lab worker called in 2 other people. They were able to lift him on to me and told me to hug him hard and make sure his chest didn't move. There was another person holding his head and other arm, one was holding his legs. Yes, I thought this was a bit rough and exstreame, especially when they picked him up. Yes, this had to be done, but this was very hard to witness my child go through this, and to have to assist in it. They took 6 tubes of blood, lots of tests. You would think they would just tape some gauze on the spot or put on a bandaid after, of course not. This is what they used.

He would not let me anywhere near that for days. I was risking injury if I did. I didn't want to use a scissors because he moves and fights so much, and the location. This was the result.

It was way too tight on him and he may have had a reaction to it. Thankfully this is healing well now.

We are still waiting on results of the tests, they told us 2 weeks for everything comes back unless something is seriously wrong. No news is good news I say. But I keep praying. The urine sample, we're still working on that. He won't sit on the toilet with the hat on it. If I can get some time I'll go in with the cup and try to catch him. We have now regressed to peeing and pooping on the floor, and it's a struggle to get him to even sit on the toilet now. Maybe this will happen, some day.

The appointment was at 8:30 am, we got home a little before noon. I left my keys at the GI clinic and realized it when we were in the parking structure. Having to go back in and to the lab, pharmacy and GI clinic to get my keys did not make Eric happy. Don't blame him, the poor kid already went through enough. This was not an enjoyable experience. If you read all the way through this, God bless you. I'll post some more fun and upbeat posts on here tonight if I get time, or tomorrow for sure.

Christmas, the Real Story

2010-01-01T19:26:00.012-06:00

Yes, I know I'm a little late here. It really was awesome that the improvements Eric has made since starting the therapy really came out. All the boys did have fun with their new toys once they were opened, for a little while. There were happy times. With that said, this blog focuses on autism. Autism was definitely present on Christmas. For a while I had a hard time deciding how I was going to present this. Eventually I decided just to tell it as it is, with my real feelings and all. I'm thinking I owe that to anyone who is reading that wants to know about how autism affects our families life. So here it is, the real deal...

At Grandma and Grandpa's house. Jon playing with the ornaments as he always does. It looks cute, but lets just say this didn't go over well.

Eric chilling out and making the most of it. Thankfully he didn't go into meltdown mode. He's learned to cope with this type of thing quite nicely. Visiting other people's houses is hard. My guys have a hard time being out of their familiar surroundings. There are different people around, what they can do at home they can't do at other peoples homes, routines are off, we had some surprises coming in and they like to know what is going to happen. There are questions about why we do certain things, why they won't eat with everyone, why they don't show excitement with opening and receiving gifts. No, it's not because they are ungrateful and spoiled, it's because they are confused and can't express themselves. It is not understood why these kids are crying, cranky, tired and bored unlike the image of happy children we all think of at Christmas. We learn as we go, so we do this. The learning process is slow and can be painful but we will get there someday.

Christmas morning. Looks pretty doesn't it? This was one of the reasons I was up all night (along with my kids waking up and other things) I'm hoping everyone is taking a good amount of time to look at this, just as I did. If you want Christmasy themed photos, this is the best your gonna get. This looked so pretty and inviting to ME. When my sons woke up on Christmas morning, this didn't even warrant a LOOK from them. They wanted the TV on and to eat. This was just another day for them. Any attempt to draw attention to the wrapped presents failed. They couldn't care less. Finally I gave Jon a present and tried to help him unwrap it. He cried, pushed it away and hid under his blanket. Yes, he is 2 years old and he is young yet, but I expected some interest. On to Eric, I thought he was a sure bet to want to try to open a present. I picked out one I knew he would love, and brought it to him. He pushed it away, whined and continued to watch TV. I turned off the TV, a big tantrum from all 3 resulted from that. I started tearing the paper for Eric, he knocked the present out of my hand and stomped off. Andy, he wouldn't even look or touch the present. Again, more crying and tantrums. He didn't understand. There was no use in prolonging this so I tore the paper off of all the gifts that I wrapped. Just how everyone dreams of Christmas morning, as a child or as a parent. Nah, didn't think so. Disappointing, yeah for sure. This was hard.

Once they were unwrapped and Eric saw all his toy trucks, and Andy saw the bottles of bubbles that came with the bubble machine, then there was some interest.

He said "open please" and "help please mommy here". This year he was polite to boot! Yes, he was still persistent though! Too awesome!

This makes it all worthwhile.

No, this is not the set to the Lawrence Welk Show. Andy's bubble machine broke a few months ago and thankfully I was able to find one (things like this are seasonal items apparently :-( ) This was the one thing that made them happy in each other's company. It's nice knowing what they love and what will make them happy :-)

The ball popper was very popular among all. Too bad I can't find any of the balls anymore. Eric took this and closed himself in his room to play with it so brothers couldn't get it and I have no idea where the balls were hidden.

Eric has some competition for this fire engine. Andy loved it. He was actually playing with it properly, which was a very pleasant surprise to me :-)

The sensory balls and the bowling set seemed to be Jon's favorites. He was doing quite well with that bowling set too, he seemed to get the concept.

Yes, they had fun. Of course there were fights, stuff got broken, parts went missing, kids got overtired and cranky. I have to say that's typical for ANY children, young children in particular. So that part was normal and expected. Maybe my expectations were not totally realistic. I was very impressed with how Eric was talking, interacted and handled himself with the stress and change in routine. He's made big improvements there. It was nice seeing some toys being played with properly. Really, this went well all in all, for them especially. I do wish that we could participate in various activities with more ease. The total lack of interest, understanding and excitement on Christmas morning was what really got to me. But those are my issues. What counts is that the BOYS had a good time, which they did.

Survived Another Round of Mommy the Barber

2009-12-22T20:34:00.006-06:00

Finally, mission accomplished. It took a few times to get this all done, but we got there. Was this easy or fun, no way! They all fought it all the way through. There was crying, screaming, kicking, hitting, scratching, one attempted bite, we're all still alive. This really is hard on them from a sensory standpoint and there is no way I can get them to understand this don't hurt. My hope is in time they get used to this and it gets easier. Probably should do it more often. With that, here's my handsome little men :-)

Poor Eric, while I was doing this he kept saying, "please stop!" I wanted to cry. On the other hand, it's amazing how much he can vocalize his feelings now. I'm very impressed with that. I couldn't leave him with a half shaved head so I had to carry on until finished, poor kid :-(.

I fixed Andy's hair. You can still see where the guard fell off on the left side of his head last time I did it, but it isn't nearly as noticeable. The back is now even too. As it turns out the #1 is a good look for both Andy and Eric.

Just as you think when you walk into my house "We're in the Army Now!" lol here's little Jon. His haircut was done a week before. He was after Andy and I got scared after his didn't turn out as I expected. So I left the longer comb on the clippers. His turned out awesome. As I think about it, the longer look fits him better. Jon's hair also gets wavy as it gets longer, which can make it hard to cut. They all look great, and I didn't have to pay $75 for it to happen :-D

So Close...

2009-12-19T15:53:00.004-06:00

The therapists have been saying since last week how well he's been doing with drinking his CIB out of a straw cup for them. Yesterday he drank it all up for them so I decided to offer him only that down here. There is a lot more fuss, but eventually he was taking sips for me. The problem is these sips weren't amounting to enough to keep him hydrated and with proper nutrients. So, I had to give him his other cup today. The senior therapist suggested putting water in there if he isn't getting enough CIB since he's much more compliant with that. Should of thought of that, it's been a long couple of days with baby brother. Anyway, he has an appointment at the feeding clinic Wednesday morning. My plan was to discuss this with them. We will have this so soon, I feel it. We just need to know how to best get through this difficult transition process and keep him healthy.

Today I'm going to take another try at cutting Eric's hair. If it don't work today I'm going to have to wait until I can get someone here to help me with him or take him to the salon again. I'm also debating shaving off Andy since I messed up his. The guard came off while i was cutting his so there are parts of his head that were shaved all the way. He may have a hairless Christmas!

More on the Holidays...

2009-12-18T19:43:00.010-06:00

Holiday Letter for Families with Autism

This is another good read for anyone that will be spending time this holiday season with someone with autism. It's written in the point of view of an autistic person. Many of our kids have a hard time with the change in schedules and routines. There is so much activity, lights, sounds and people. This can be hard for any young child. There are times our kids will want to be alone. Sometimes they will stim and people ask questions. If the child won't sit down and eat with everyone, or they don't seem to get Santa, or unwrapping gifts it could be taken the wrong way. With a little communication with the parents, and as much patience and understanding as possible the holidays can still be a wonderful experience for everyone.

Decorations
At this point, I only have a tree. It may stay at that too. I may get some stockings to hang high where they can't reach. The reason for this...

This is what my tree looks like at this time. I'm hoping to try to put this back together on Christmas eve night before I put out the presents so it looks nice for Christmas morning at least. It won't last long, I know that. Here's why!

As you can see, he's quite proud of himself for doing this. Eric thinks the ornaments are balls. During one of his tantrums he knocked the whole tree over. Nobody was hurt, but that wasn't fun.

Parties
Tonight my wonderful friend that I used to go to church with invited me to her house for a Christmas party and meal. It was a short notice invitation, and I was actually going to pack up all 3 boys this evening and go over there. Jon woke up from his nap sick, so we couldn't go. Maybe that was God's way of telling me I was nuts to even THINK about trying this. I honestly didn't expect to stay there long. I'm always prepared to pick up and leave very quickly if they just can't handle this type of thing. Maybe I would have been able to eat with the kids. Ronda knows me and my children very well, and would do whatever reasonable to accommodate to them. The people there most likely would know our family too. But when the behavior becomes not so desirable, it gets noticed. When we used to go to their dad's family gatherings it was never a great experience. I was always pinned down by a child who was having a hard time so I could never talk to anyone, eat, or enjoy anything. The relatives would get offended if my kids did not act like or play with the other kids, would not eat the food offered, and would not rip open their presents and jump up for joy or show appreciation. Of course there were always the "I don't do a good enough job disciplining them", "You hold them too much", "You don't talk to them enough or they would be talking", ect. Their dad never wanted to leave when the kids had more than enough and I was having a miserable time. This was so not worth the stress and the upset. I've found that having realistic expectations, preparing the children as best as possible, letting the host and guests know what is going on, and having an escape and being willing to leave at a moments notice is the best way of going about something like this. We will be going to my mom's house on Christmas Day. It's not going to be a lot of people and they don't go nuts with the decorations, so that will help. I have answers prepared for the questions I figure I'll get. We should be good to go. It is important to have family and friends in life, especially around the holidays. Everyone should be able to enjoy themselves in their own ways.

The message is quite clear here. This was at the end of the school Christmas event today. Sadly, this was 15 min before he could go :-(

Gifts
Last year the boys had no clue about unwrapping gifts. Seeing the all the presents under the Christmas tree didn't peak any interest in Eric or Andy. Jon did like the paper, but was still a bit confused but he was only a year old. It was hard to see this, surely not how I pictured Christmas morning. They loved the toys though! For the last couple of weeks I've been debating whether or not to wrap their gifts. I love wrapping presents and making things pretty. It's theraputic for me. On the other hand, I'm thinking it would be easier and more enjoyable for them to just have the toys under the tree ready for them to grab. Right now I'm thinking of doing some of both. As to how they would react to wrapped gifts, I got a preview at Andy's school Christmas party today.

It took forever to get him near this and anywhere near interested. He couldn't of cared less.

The SLP telling him "open", he didn't know that. All the other kids ripped these open.

At least he let me take a pic of this by him, but it took many presentations.

He loved what was inside though!

I'm now ready if they are not interested and don't get it. Yes, I will be sad, but we can still make this enjoyable. It's still going to be a big photo shoot. We are going to have fun.

Happy Holidays to All our friends and loved ones!

Visit to Andy's School

2009-12-18T18:37:00.005-06:00

Since today was the last day of school before Christmas break begins, Andy's school had some special holiday activities and parents were invited. I was able to get a sitter for Jon and attend this. It was really nice. Andy really didn't attend much, he just was wandering and doing his own thing for the most part. He did get a couple of presents, I will talk about that more in the post I will write after this one. I was able to meet one of the speech therapists that work with Andy this morning. They also had the communication device that he is using out so I could see it in action. There were a couple of other parents there. There was still a lot of activity and a lot of people. The schedule was off, and Andy is not used to me being at school. This is an integrated 4K classroom. There are 16 kids in the class, one special ed teacher, one regular ed teacher 2 aides (one is specifically for a child that has extensive special needs, the other works a lot with Andy but is available for the whole class). Last year there were only 8 kids in the class, and it was strictly special ed. This is probably one of the reasons why he's having a harder time. When I first came in he was sitting at the table eating snack with his classmates. Once he seen me he wouldn't sit down. He kept turning on and off the lights. The door was opened so parents knew they could come in, but Andy kept leaving the classroom and I had to get him twice. They closed the door and from there he pretty much played on his own. From here I will tell about this with the pictures.

This had me a bit worried this would be a very short visit when I seen this as soon as I walked in the door... already trying to give me my jacket???

This is the communication device Andy is using at school. He's learned "more" quite well. The speech therapist said he knows the core vocabulary, but only actually uses more consistently on the machine.

I never knew he liked puzzles this much. It was hard to keep him away for a while. He started out actually putting them together. After a while he wanted to take them ALL out and dump the pieces and make a mess. Obviously that wasn't allowed. I wish I knew he liked puzzles before I did my Christmas shopping. I still can get some for him after.

Holding a Rudolph puppet. Mostly running around with it like he does with clothing at home.

Just like at home, he loves the phone. They have the same idea, plug it into electricity so they can push buttons and have light and sound, but not plugged into a phone line so they can't call anyone!

Andy was followed around with this throughout that hour plus. When he wanted a toy or something the SLP had him push the "I want" button.

Picking out train cars

Getting them set up. I really didn't know he was into trains either.

He knew how they went together. No, it wasn't on the track but he did keep them on the table!

He LOVED pointing to the days on the calendar. They said he picks it up and does this every day at circle time :-) Eric loved to do this too when he was this age.

Rudolph is joining Andy at the magnetic maze thing.

Welcome To Holland

2009-12-18T09:00:00.001-06:00

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Andy and Jon with Snuggly Friends

2009-12-12T17:49:00.005-06:00

None of my boys have been real into stuffed animals, at least that I known of. For some parents this would be wonderful since their homes are overun with them! A few have shown up here and I keep them in the toy box. One morning about a month ago (yes, that is when these pics were taken, I've been slacking on the blog updates)Andy found a Beanie Baby dog in there. I honestly didn't know we had this. He just kept holding and looking at it. He handled it so gently, there were times it almost looked like he was trying to "talk" to the doggie in his own way.

What a big smile!

I LOVE this picture of Andy. If I didn't know better, I would think he was "talking" to that dog. He was holding and handling it so gently. Andy's been having a hard time the last few days handling his frustrations. Earlier today I gave him doggie during one of his moments and he calmed down. There is a golden retriever at the house next door that he loves too. Mommy would love to have a real dog too, but I don't think the landlord would appreciate that. These 3 wonderful little boys keep me out of trouble :-)

I put up the edited version of this because it looks so much cooler than the blurry original. These boys look so comfy here. Jon is holding a Care Bear. I believe it's Goodnight Bear. It's blue with a moon on it's belly. We've had this for about 5 years. I bought it for Eric but he had no interest. It made the last 2 moves amazingly. Jon is the only one that will touch this.

Jon found a very soft cuddly teddy bear. His name is Mr. Jones. It's the mascot of his dad's employer. He will hug the bear, but most of the time Jon wants to throw it like it's a ball??? Whatever works, I'm glad they are finally getting some enjoyment out of these toys.

School Pictures

2009-12-12T17:15:00.005-06:00

Just got Eric and Andy's school pictures. For most people this isn't a big deal. Sometimes the quality of school pictures isn't the best. I do have to say this year I was pleasantly surprised. The boys love it when I take pictures of them with my camera at home. The lighting, equipment, the strangers throw off these little guys when portrait studio or school pictures are taken. I wrote a note to the photographer and teacher on picture day telling them to do their best to get a shot of them that looks decent. Don't try to pose them, don't try to make anything perfect. Quick as possible is the best with these guys. Here are the results!

Eric's 2nd grade picture

He actually smiled better last year, but this still looks awesome!

Andy's 4K picture

Here is my handsome hazel eyed boy. I wish I knew where those eyes came from! This is beyond awesome! When he was about 2 1/2 years old I took him to Sears with Jon to have pictures taken. Andy would not even stay in the room, let alone let them take his picture. At the end they did one close up shot of him that did look nice with some of their enhancements. That was not a fun experience to say the least. Last year they had trouble getting him to sit, the photo was OK but you could tell it was done really quick. This year he did great. I first seen this picture on the Safe Kids ID that we got for free. Thankfully the photographer let me order these later without the inflated costs of reprints. I could not pass these up.

Autism Night Before Christmas

2009-12-10T09:22:00.002-06:00

This is a poem written by one of my Facebook friends and autism activist Cindy Waeltermann in response to family frustrations that come with the holidays. Cindy is the founder of AutismLink and the Autism Center of Pittsburgh. Links are in the resources. Thank you for letting me post this here.

Autism Night Before Christmas
by Cindy Waeltermann

Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse

We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract

The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head

Did I get the right gift
The right color
And style
Would there be a tantrum
Or even, maybe, a smile?

Our relatives come
But they don't understand
The pleasure he gets
Just from flapping his hands.

"He needs discipline," they say
"Just a well-needed smack,
You must learn to parent…"
And on goes the attack

We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side

We know what it's like
To live with the spectrum
The struggles and triumphs
Achievements, regressions…

But what they don't know
And what they don't see
Is the joy that we feel
Over simplicity

He said "hello"
He ate something green!
He told his first lie!
He did not cause a scene!

He peed on the potty
Who cares if he's ten,
He stopped saying the same thing
Again and again!

Others don't realize
Just how we can cope
How we bravely hang on
At the end of our rope

But what they don't see
Is the joy we can't hide
When our children with autism
Make the tiniest stride

We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,

But what they don't know
Nor sometimes do we
Is that children with autism
Bring simplicity.

We don't get excited
Over expensive things
We jump for joy
With the progress work brings

Children with autism
Try hard every day
That they make us proud
More than words can say.

They work even harder
Than you or I
To achieve something small
To reach a star in the sky

So to those who don't get it
Or can't get a clue
Take a walk in my shoes
And I'll assure you

That even 10 minutes
Into the walk
You'll look at me
With respect, even shock.

You will realize
What it is I go through
And the next time you judge
I can assure you

That you won't say a thing
You'll be quiet and learn,
Like the years that I did
When the tables were turned…….

Another Goal Accomplised

2009-11-29T19:42:00.003-06:00

For the longest time Eric would not accept anything on his head. This is a thin plastic fireman's helmet that Andy got from school when the fire department visited. Now if he'll keep the hat on outside during winter weather... I could not get a picture where he kept his eyes open. Like mother, like son.

Time to brush

2009-11-21T17:41:00.003-06:00

Brushing Eric's teeth has never been a fun job to say the least. It's always a fight. The therapists and I decided to teach him how to brush his own teeth. In time he started accepting the brush in his mouth without a fight. We have worked up to him doing most of the brushing himself. He's now ASKING to brush his teeth. I never thought I would see the day.

I'm enjoying this excitement while it lasts. The next step is kid's toothpaste. I've been using baby toothpaste because he don't get the rinse and spit thing yet. If we're able to help him get this far, it will come.

Budding Artist?

2009-11-21T17:22:00.006-06:00

Most likely not, but this is still awesome. A year ago it was very hard to get him to sit down to paint, color, ect. He just isn't interested in it. At school they say he'll go along with them to do these kind of projects to get it over with. One day while I was at the dollar store I bought some watercolors thinking the therapists would like to try this with him. I was right. It took some prompting and hand over hand to start, but he eventually took the brush and started painting. He was just stroking it wherever on the paper, but we were thrilled to see him doing it.

One of the therapists is an art major. She's interested in art therapy. Last weekend it was really nice outside so she brought Eric outside with sidewalk chalk. I was out with a friend so I didn't see them do this. This is what I came home to

I asked this therapist when she was here if Eric actually helped her with this and she said he did. Sidewalk chalk is something I am not fond of touching, so for him to do it was surprising to say the least. I'm quite impressed at how this turned out, and with Eric being willing to participate in something like this.

Fall Festival

2009-11-08T20:07:00.005-06:00

On Friday night I was able to secure some respite time so I could take Eric to the fall festival at his school. It was a great chance for me to spend some one on one time with Eric. It's a good thing I didn't have to take the other 2 boys, we would have never even gone in. When we got there, the line for the tickets went out the door. I never expected to see this many people. I was very tempted to just to leave, but I didn't want to waste the respite hours and wanted to give Eric a chance, and to see how he would deal with this. I bought $5 worth of food and game tickets, the line went faster than I thought it would. The food line wrapped around the cafeteria the whole time we were there. Forget about buying supper for me there, Eric would never tolerate that line, nor would I...

We looked around some more and saw activity in the gym. They had different contests there, one was a hula hoop, there was a basketball one and a scooter race. Eric could not hula hoop. That's OK, so we went to the scooter race. The kids had to sit indian style on the scooter and one of the volunteers pushed them. Eric wanted to ride his own way. I pushed him along with the race, but he didn't count. This was the highlight of the evening.

We were able to do this twice before another child asked if he could have the scooter. Next we tried the cake walk. He was antsy at first waiting, but once the music started and we started walking he got the hang of it quick. He was even following the lead of the other kids. The lady running this was Eric's para, so she was nice enough to let me walk with him. We did this twice, didn't win anything but that's OK.

After this we tried a beanbag toss, but he wasn't interested after the wait. All of this lasted an hour, the whole time with lots of people, noise and activity. He held it together quite well until this point where he was just done with it. Not that I could blame him. The food line was still long as ever, and I had enough with all these people myself. He kept leading me to the door, and so we went. As you can see, he had enough.

I'm very proud of how Eric handled himself in this very busy, and unexpected situation. An hour for him in this is excellent. The school put together a very nice event. They did make the best effort to accommodate to Eric. I wish we could have stayed longer and done more, but this was still an awesome time for me and Eric.

Way To Go Eric

2009-10-30T16:03:00.002-05:00

He was kept quite busy last weekend. Yes, this is still cheerios. But we are trying to get him used to using the spoon, and a bowl. There was a lot of crying, fussing, and tantrums at first, but he did it. Persistence pays with these boys. If we can get him to take the cheerios off the spoon, the hope is he will open up to a much larger variety of food. The sitting down part, we will take care of that in time too :-) For now, we'll take what we can get. Yeah Eric!!!

Fall Fun

2009-10-30T15:29:00.008-05:00

Eric's therapists took him out to play in the yard last weekend. Playing in leaves is great for sensory activities. I've seen Eric hold leaves in the past, but putting his whole body in them is another story I guess.

Here was the result of that, he's otta there, fast!

He wasn't too crazy about them falling over his head either. Thankfully it was just a hand full from me.

This is more in his element. He found a baseball that his dad left here and was having a great time throwing that around. This was a great shot of him holding it.

Andy LOVED the leaves!

Adventures of Jonathan

2009-10-23T11:03:00.001-05:00

These are pictures from late summer to present. I decided to post them here because a good number of them were taken during his therapy sessions, EHS visits and picnic, speech class, ect. The brighter spots from Wednesday's EHS home visit are included.

Jonathan

2009-10-22T16:05:00.004-05:00

Jon has been followed by Early Head Start and Birth to 3 since he was born. With 2 brothers having extensive developmental delays and diagnosed with autism, they decided to keep a close eye on him. During the first year there seemed to be no major concerns. He had some muscle weakness and low tone, and some sensory issues but no major issues. The delays slowly started creeping in. He is now very behind in speech, at the 6-9 month age range in most areas. I've started noticing a lot more stimming behavior. He now runs around aimlessly. His response to his name, sometimes yes, mostly no now. Eye contact has become more sporatic. There is growing concern. The good news is that Jon does make more effort to interact and talk than Eric or Andy do, and he is more willing to touch different things. The feeding resistance is starting to creep in, again not as bad as his brothers but something we have to keep on top of. Yesterday I had the camera out, initially just having fun taking pictures, during Jon's Early Head Start home visit. When the focus is on Jon these behaviors become so much more apparent. Some of this may be hard to see as still images, but I'm sure most will get the idea. Here are pictures taken during that 90 minute visit, in no particular order.

He's shown some of these behaviors in the past, like the running off and lining up stuff. but some of this was new. The thing with his ear, and the stimming by his tummy in particular. The movements were odd, and quite jerky. The family advocate expressed concerns at the end of this meeting, and noted deterioration. We started discussing getting going on evaluations for Jon. I thought about it yesterday. This morning I made the phone call to CHW Child Development Center and got the process going. While I had hope we would not have to go here again, it really don't surprise me that we are. I know the process now, so we can go through this without a lot of delays or surprises. At this point, I'm ready for anything. Either we will be told that there are no issues, or we will be getting him the help he needs as early as possible. There is no way to lose with having the evaluations, although I'm pretty sure I know how this is going to turn out. Yes, I am sad and tired. But I know that we've all made it this far, and with big changes in our lives in the last year to boot. This is a familiar road, I'm informed of the process and sources of help. It will be OK no matter what happens at that eval. It's looking like this will be taking place sometime in January. I'm also going to try to resolved the insurance issues with the genetics clinic, and push for more testing to rule out anything physical, with both Andy and Jon. Three kids with similar issues should say something.

This afternoon the county caseworker for the CLTC waiver (which funds the therapy) was here for recertification for Eric and Andy. It looks like Andy will be starting therapy in February or March. She is also thinks I should qualify for more respite through family support. That would be awesome since I'm burning up most of my 6 hours a month for Jon's speech class and Dr. appointments. We were also told it would be likely that Jon would qualify for some of their programs too. I was told to give her information as the evaluation process continues. It was a long meeting, and a long , emotional day but it's all worth it. I know this is the right decision. We will see where it goes from here.

Andy Updates

2009-10-22T00:31:00.002-05:00

Andy is doing well in school. It's been a no news is good news type deal with him. His early childhood class/4K is now an intergrated class with a regular and special ed teacher, 2 assistant teachers and more kids. The day was extended by 25 min also. I am seeing signs for "me" and "more" frequently and he is starting to make more sounds. There are the rare times I've sworn I heard a word from him, and I take it and run with it :-) He is doing much better with sitting and attending to a task now. He will also put a spoon in his mouth, until I put food on it. It's a start.

I heard last week from the supervisor from Eric's therapy provider that Andy's funding for his ABA therapy should come through by the end of this year, and could be starting therapy by January. Tomorrow the county caseworker comes, and she will know more. I'm really hoping this is correct. School is great for him, but he really needs more help so he can progress. It is hard for me to do that with 2 other kids to care for, and not much guidance from the school or anyone else. I will update this if I find out more.

Were Off and Running

2009-10-17T10:30:00.002-05:00

When I say off and running, I mean in full force. Eric has therapy 7 days a week now. He is meeting his hours and more, no question on that. The days where he has half days of school or no school are filled with increased therapy hours. The good news is that with more hours, the more improvement there is. The bad news, it eats up a most of our family time and privacy, and it can be quite hard on Eric. On full school days they are usually here right away when he gets home, and they work with him until about 6:30 at night. By about 5:30-6pm he is very cranky and uncooperative. not that I can blame him. I would be pretty tired, cranky, hungry and ready to have my time to myself by then too! As much as I want to go upstairs and tell them to let up on him, I can't. He has to learn to hold on. It's just like I can't go up there and rescue him when he has a tantrum, they have to do their job and sometimes he isn't going to be happy about it. With all of that said, I really believe that we would not be where we are with Eric right now if we didn't take this commitment full on. He is saying so much more. He will drink out of a straw cup now. He is most of the way potty trained now (hope I don't jinx this now!). He's much more tolerant of hats, the hair clippers, and a spoon in his mouth. I may even be able to brush his teeth with toothpaste soon (he will brush well with just water, better than nothing...)! He was singing along with Madonna to "Who's That Girl" and doing a darn good job at it! I never thought I would see many of these things happen. He still has a long way to go, and we will be taking advantage of his next 2 years of intensive therapy. After his 3 years of the intensive phase are up he will go into the ongoing program until he is 18. The funding will be greatly reduced and will cover things like classes at the Y or RexPlex, horseback riding therapy, music therapy, social skills classes, very reduced ABA, ect. Part of me is looking forward to this because it will be easier on the family, but 3 years sometimes seems so short for the intensive.

We've had a change in personnel at all levels. The provider has changed the supervisor for Eric, and ultimately our family's case (Andy will be starting in a few months, don't know how that's going to be handled) Eric now has a new senior therapist since his previous one was overwhelmed with her load, and new line therapists are training in. These are all positive changes. The changeover is going quite smooth now that we are up and going after all the illness, ect.

Today's session went well until the half way point when it was time to change therapists. He had a major meltdown. I thought the second session was going to be toast until she took him outside for a while. After that, he was calm and cooperative the rest of the time, although very hungry and ready to relax after!

Free PECS symbol printouts, and more

2009-10-06T19:04:00.003-05:00

Here are a few great sites to visit if you need PECS symbols for your child. Thank you Heidi and Claire for providing these links.
Children With Special Needs PECS downloads

do2Learn

SparkleBox

This is a great site for homeschooling, and holiday activities
Make Learning Fun

I've also taken picture of items Eric uses often and had them laminated to create personalized PECS for him. We did this for all family members to help with identification, but he learned that before they were done :-)

"Here's Your Sign"

2009-10-06T18:30:00.002-05:00

It's starting to look like a conversation with Eric may be possible some day. He was having trouble getting his pullover jacket off. He came right up to me and said "help please".

Lately Eric has been wanting all the lights off in the house. So many times the TV and computer screen are the only light sources around here. I turn them on, he turns them off! One evening I actually wanted to read the stuff he came home from school with so I turned on the lights in the dining room, the ones on the ceiling fan. He comes by me, points up and says "off please". I finish up what I need to and turn off the lights. He says "thank you". Wow!!!

This evening the therapist told me he knew the whole alphabet in sign language. His former teacher has a hearing impaired child so this really didn't surprise me if he was taught something like this. I am surprised he remembered it all!

Last week I had Rhapsody on and I have some of Bill Envgall's stuff in my library. Anyway, one of his tracks was playing, and Eric said, at all the right times, "Here's your sign". Let me tell you that made my day.

Still On Hold

2009-09-30T15:41:00.002-05:00

Eric has not had therapy regularly for weeks. It was called for all last week because of Andy's skin infection, which in reality is just like planters warts. Two doctors gave Andy a release to go back to school, Eric's school was not concerned about this. Last week Andy was able to go to school without any issues from this. They told me they would restart therapy Monday. Early Head Start and Birth to 3 still came to our home. The provider still would not bend on their rules, they stood pat with Monday. Last weekend both Eric and Andy came down with colds. The provider decided to wait until Thursday to start. This I can understand, since Eric has a pretty nasty cough and runny nose, is cranky and really not feeling that great. This cold is more of a threat to the staff and other kids than Andy's skin infection. This makes all this from last week much more irritating. I've been assured he won't get kicked off the waiver, but it isn't doing him any good if the darn therapists aren't coming. They called today, asked if the cough, ect was gone. It's not so I said no. Now we wait until Monday. The school is still not sending them home because of this. Early Head Start was here this morning. You would think if you work in this field, or if you have young children dealing with frequent colds and such comes with the territory. Yes, illnesses can be more severe in autistic children and I do worry sometimes with my boy's limited communication skills and nutritional intake that something could get serious and they could not tell me. But I had to let go of those fears because it's a necessary risk to get these kids the help they need. At this point I am beyond angry about this therapy issue. I feel bad because I'm not fighting for Eric more. It's futile, makes me very stressed and I am just tired out from it. I sometimes wonder if they think this is somehow my fault, I am sure they will find a way to make it look that way. I'm doing what I can with Eric at home. He is doing great with the talking, but the behavior issues are getting worse. I've been having problems with aggressive behavior from Andy too. It's so frustrating all around. I wish I could do more...

What Kids Won't Say...

2009-09-21T22:25:00.002-05:00

Despite the lack of therapy as of late, Eric is really starting to say a lot. We are still a long way from a real conversation, but am hearing the beginnings of it.

Every morning he points out the window, where the bus would pick him up and say "time for school". Doesn't get the weekend thing yet, but we are getting there.
He is identifying his therapists by name, sometimes he gets a little confused and repeats a name, but he has a winning record going :-)
I had talk radio on at low volume one day while therapists were here for Jon, it was one of the last days of summer vacation. There was a high profile company in the state that was having contract disputes with the union, and the one therapist commented that it looks like it will be bye bye jobs for these folks. Eric chimes in with "bye bye Jon Jon" Baby brother is not going anywhere Eric.
One day he was having trouble getting his shoe off. He said "oh s#!t!" Yup, he's repeated it before, I've been very careful so he don't hear it but he still said it on his own. Thankfully it was only once!
Speaking of shoes, he will point out in the kitchen, where he puts his shoes and socks once he is done with them, and say "socks, shoes" then "I want to go outside." Problem is every time he does this it's at a time I can't take him :-( You don't know how bad I want to take him outside though since I'm so happy to hear it! He also says upstairs and downstairs very clear now.
There were times when Jon was crying and I heard Eric say "calm down", not like baby brother listens ;-) Last night he was eating, and he looked right at me, pointed at me and said "calm down", with plenty of authority too! Was he trying to tell me something? I wasn't upset. Maybe he could pick up that I'm stressed about this therapy issue, who knows. If he can pick up on my emotions, I'm in trouble...
"oopsie" is very much a favorite word of his, and he uses it appropriately. It sounds fun, why not?
Tonight I told him to turn off the tv , he asked "why?" I told him it was time for bed. Why? Because it's time to go to sleep. Why? Because I said so!!! Why?
Maybe I better be careful what I wish for? It sounds so sweet right now I don't care if it's annoying!

Attack of the Molluscum Contagiosum

2009-09-21T10:57:00.002-05:00

Huh??? What's that???
Seems to be a very popular question these days around here. A couple of Fridays ago Andy's school called me and told me there were some bumps on his elbows, hands and knees that look like chicken pox, but the school day was almost over so they sent him home at normal time. I took him to the doctor soon after and chicken pox could not be confirmed because there just wasn't enough evidence suggesting that. I was told to bring him back Monday morning. So I cancelled everything until I had more answers. Brought him back last Monday, doctor said it wasn't chicken pox but didn't know what it was. He gave him a release to go back to school and referred me to a dermatologist if it didn't clear up soon on it's own. I will be honest, I gave it a couple of days because I would have to pay for the specialist out of pocket since I could not find a dermatologist within reasonable distance that took his insurance. The hope was that this would go away. The next day the school sent Andy home because of the blisters. I finally bit the bullet and made the appointment for the dermatologist. They were able to make an appointment for Friday.

The word from the dermatologist after a thorough look, Molluscum. In short, this is a viral infection that hits the surface of the skin. It's similar to warts, it's in the pox family of viruses but nothing serious like chicken or smallpox. This is commonly spread among young children in daycare and schools from direct contact, and from sharing clothing, towels, ect. Until his little immune system totally fights of this virus we may be dealing with outbreaks of this. This could takes months to a year or 2. There are probably many kids who have had or have this and it was never detected. Very few people I have talked to have heard of this and know what it is, which is leading to a problem.

The dermatologist gave him a release to go back to school, explained to me that this is nothing that should keep kids out. I sent him this morning, he was never sent home. The remaining bumps are crusted over, the rest are healed. When I told Eric's senior therapist about all of this, and gave her the pamphlet that the dermatologist's office provided I thought we would be set. I get a call later that day saying that she is going to discuss this with her boss that was on call for the weekend and the therapist that was supposed to come and see what would happen with therapy. The concern, the fact that this is contagious. The decision makers decided to cancel therapy for the rest of the weekend. I called this morning and they wanted more info. I spelled out the name of the condition for them so they could research it on the internet, I had the dermatologist's office FAX the pamphlet so they could read it. I called around noon and was told it was decided to give it a week for Andy to heal and make sure he don't break out more, then a decision will be made first thing next Monday morning. So now we sit and wait, and Eric is not getting therapy. Without boring everyone with my full opinion on this, I will just say I am not happy. Considering everything I stated above about Andy getting better and getting treatment, the fact that the worst that would happen is if someone had a very weak immune system the rash would get really bad. He is not scratching them so they are not spreading as much as they could. This is not bothering him, and he is carrying on with his little life as he knows it. It could be a while before this is totally cleared up. I understand the close contact they have with Eric and all, but Eric don't have it! I'm going to continue calling around to see if we can make this wait a little shorter so Eric can continue with his very needed therapy.

Breaking Resistance

2009-09-04T09:23:00.002-05:00

Last week I started noticing Eric was taking drinks of water or juice out of his straw cups independently. His teacher and school are concerned about him not eating and drinking anything at school for nutrition and hydration reasons. They do not want his preferred cup there, and he has to adjust to a new teacher and routine again so he is not comfortable using the straw cups at school yet. His feeding clinic appointment is Sept 16th with the whole team, including the GI doctor. The psychologist there told me that if no progress has been made the hospital will be strongly recommended. I would prefer to avoid that due to child care issues with my other sons if I could. If it has to be, we'll find some way to make it work but I would rather not. The pressure is on, and as seen from my last post therapy time has been in short supply, and will be for God knows how much longer. While they were here this summer I watched and learned a lot of the ABA techniques and really started practicing with him at home, and in everyday life. With all of that I felt quite confident and patient, and the time was looking good so I took matters in my own hands. I hid the preferred cup and brought out the straw cup with his CIB and would offer him nothing else.

This has not been easy, nor has it been fun. He has been crying, screaming, fighting, kicking and hitting me, and still not drinking a real lot. I have to keep persisting until he complies, can't give in. All the while it is necessary to stay calm. This is not easy to do. The hope is that he eventually gives in and accepts that is how it's going to be. This plan worked with the haircut, and I got the job done and it looks quite nice if I do say so myself ;-) (I did have some help from his therapist there). This is harder because Eric has it in his head that the only way he can eat and drink his main meals is in his chair at the table and out of his preferred cup. There is no flexibility in his mind and the resistance to any type of change is VERY strong. This is how many children on the autism spectrum are wired to think, it is very rigid. It is possible to break through this resistance and change their habits and routines, but it is not pretty to watch or carry out. Yesterday was a tough day for most of the day, until his before bed feeding. He let me guide the cup and straw to his mouth, and he sucked a little out of the straw. I asked him to take 10 drinks, counting all the way through it. He still isn't thrilled about it, but he is doing it without any major tantrums. We're starting to get the desired result. He's so close to accomplishing this transition I can taste it. All the tantrums, bruises, yelling, lack of sleep and stress is paying off. I really think he can take this all the way this time.

Yesterday after school he seemed quite tired and out of it, and I noticed that he didn't eat or drink anything at school. So I did give him his drink from the preferred cup at that time to get him what he needed. I resumed with the straw cup at the next feeding. That is where the real fight began until the next session where he finally started to give in. I'm putting this in to let everyone know that I am not putting his health at risk to do this and that I am going off the guidance of his doctors. Professionals really need to be involved when doing things like this. I am glad to see that he will drink the water and juice with the straw, and with various cups. Without this I would not have attempted this with his CIB, which is his main nutritional source.

Keep rooting for Eric everyone. We are almost there! I will update once we make it.

Fall Therapy Updates

2009-09-04T08:57:00.002-05:00

There hasn't been much going on. Most of Eric's therapists have gone back to school and have very limited schedules and Eric is not on it, or they left the company. The thing is, these therapists gave me 2 weeks notice that they were leaving. The company should have known this and started hiring and training while they were here. He was running short on hours for August because of his week of camp and staff shortage. Add in the fact that some there has been sickness and vacations with the therapists too. Now that the fall schedule has started his therapy schedule is quite short to say the least. One of the new trainees lasted a week. The other one I am not sure about. There was another I met briefly once but she didn't seem that friendly. She's on the schedule for Sunday but she isn't trained in yet and I don't know if she is staying with Eric or not. Eric has had one day of therapy this week. His next day is tomorrow for 3 hours. From here, who knows. The state requires a minimum of 20 hours a week to stay on the funding waiver. Hopefully the provider has talked to who they need to about their staff shortage. Personally I think they should have prepared better for all of this, but I don't know everything that goes into this either. This is the 2nd provider we've worked with and it seems to be the nature of this business. Hopefully we have a pickup in hours soon. In the mean time I am doing what I can with him. Thankfully it is pretty easy for parents to learn and apply ABA techniques. It does take a lot of time and patience which I know is not as easy for some parents as it is others. For now I am doing what needs to be done. He is back in school now to so that helps.

School Has Begun

2009-09-03T20:53:00.003-05:00

Here is Eric and Andy waiting for their buses to go to school. Eric's first day was Tuesday. I thought Andy's was too. The first bus comes and I ask if it's for Eric or Andy since Andy's came first last year, no it's for Eric. Andy was NOT happy with that answer. I had some stuff on the porch that Eric needed to take with that never made it on the bus. So I wait for another 15 to 20 min for Andy's bus. We had to go inside because Jon woke up, that didn't go over well either. Tried to call the bus company, stayed on hold for 10 minutes knowing I didn't have a prayer at getting through. I quickly dress Jon and pack him, Andy and Eric's stuff that was left behind and we were off. We got to Andy's school to find out he didn't start school until Thursday! Apparently it was in a letter I got. How could I get that wrong? Anyway I go take care of everything at Eric's school . I met his teacher, but she wasn't expecting to see me and I had 2 little kids with. I am not forming an opinion right now because of those reasons. We get home and I find the letter for Andy and sure enough it says the first day is Thursday September 3. Duh! I really need to start reading closer. He got off OK today. I was getting concerned about his bus when it was getting to be 10 min before his classes started. We live only 5 blocks away from the school so they got here 5 min before and were still on time. This time he was very good about waiting for his bus :-)

Eric is now in 2nd grade. He's in a self contained special ed class that specializes in children with cognitive and more extensive disabilities. There are kindergarten, 1st and 2nd grade students in this class. Initially he was supposed to have the same teacher all 3 years but she took a new job. Eric has a new teacher this year. He and I are slowly adjusting. She is saying it is taking some time to get him to listen to her. I have to get used to her communication system, it is much different and less detailed than his former teacher's. She did work as an ABA therapist while in college and taught a class that was all autistic children before. So this is really nice for Eric. I think it will just be a process of getting used to everyone and everything. Eric has the same para this year which helps.

Andy is starting his 2nd year of early childhood. This year it is actually Early Childhood/4K combined. There are 15 kids in the classroom, both special ed and regular ed. There is also 2 teachers, 1 special ed and 1 regular ed and 2 assistants. The school day is also 25 min longer, although it is still half day. He gets home about 11:15 am. There were no phone calls from there and no notes so I am assuming everything went smoothly. I don't know what is going to happen next year since he can't start kindergarten. He don't turn 5 until 9/27/10 so that is not going to meet the cutoff date. It will be nice for him to have the extra year. Their goal is to get him into the regular kindy classes at that school. As optimistic as I want to be I really don't see that happening. You never know, but still. He very well may be starting his ABA therapy sometime after the new year. The state is really moving with getting these kids off the wait list. That is great, but I hope there are therapists available to work with him since we are having problems with that for Eric. See a future post for more info on that. I am so behind on this, it will get here sometime.

Through My Eyes by Thanh Bui

2009-08-31T17:10:00.000-05:00

Through My Eyes by Thanh Bui

Just when I think this is hard for me as a parent, this makes me really think about how this is for my sons to go through. I love this song.

More From Little Mouths...

2009-08-15T11:24:00.001-05:00

Eric is now verbally identifying all family members. Yeah!!! That happened quick. When Jon slipped on the wet floor in the bathroom after I was done with his bath (no he was not hurt) Eric says "whoopsie Jon Jon"
Eric tripped as he was heading into the house after camp one day. He skinned his knee. He said "owie" numerous times.
This morning Eric was saying "hot" to me and went by the air conditioner. Needless to say the AC was turned on.

Jon comes up to me at random times
"HI HI HI HI"
There is plenty of volume to that. It is so cute, and he is looking right at me too. I'm hearing more "mommy" from him in the last few days too. Hopefully this all can stay consistent. It's really confusing when I know I am hearing this stuff but they say his language is at a 6-9 month range with some scattered. I just keep talking to him, hopefully he retains some of it. I'll take whatever these guys have to say to me :-D

Camp Wrap Up

2009-08-15T10:26:00.007-05:00

Thursday was Eric's last day of camp. On Wednesday they brought up concerns about Eric in regards to the overnight at the campground. He was not listening to the staff as well as they would have liked. He would not stay with the group and just wanted to do his own thing. This brings up too many safety concerns outdoors at a camp ground, especially in an unfamiliar place without mommy around. They and I agreed it would be best that Eric did not do the overnight trip this year. It would have been a nice experience for him, but he's not ready for that right now. I felt much better with him at home sleeping in his bed, especially after reading about the teenager on the spectrum that drowned after he took off at a campground in NY (yeah, I need to be careful what I read.). Anyhow, they said he just wanted to play on the playground all day. I believe that. Here he is on Thursday

For his last day they let him hang outside all day. I thought that was pretty cool. Yeah, I know it don't help with the other issues but they said they want to make this a positive memory for him.

Eric with the tent he got for participating. He got it early since he didn't attend the overnight. Don't know if it will ever be used, but it was a very nice gesture. Maybe some day. He really did play hard on that playground, he so needed a bath when he got home.

Dinner Out? I Think Not

2009-08-14T09:59:00.002-05:00

The reason why? Incidents like this . I've been there a few times, sans the running around which I don't allow. It's not fun. The stares, the complaints, the nasty comments, you know the drill. Families handle this in different ways. There is no right way, but here's my take.

As for this article, I really cannot blame the waiter for his reaction. Running around in a restaurant is a big NO-NO in my book. It puts everyone's safety at risk. If they can't sit, we leave. As for the other patrons, here is where I am mixed. There are many insensitive people out there. Many quite frankly are concerned with their own comfort and enjoyment only. To a point I don't see this as a bad thing. Other people do have the right to a quiet, relaxing, and enjoyable meal out. But a restaurant is a public place and that can't always be expected or provided. A family should also be able to go out for dinner without having to deal with people that don't understand and the wrath of strangers because their kids are not as quiet, or don't behave quite like others. Derogatory remarks about anyone's disability are unacceptable to me. Reality, if a restaurant gets complaints about the behavior of children they are going to side with the insensitive clods, not the parents or child. They are just looking at the good of the majority of their paying customers over the one.

Children need to go out in public to learn how to act, whether they have autism or not. It is something that is learned by doing. I'm sure almost every parent has put themselves on the line in public to teach their children these skills. Unfortunately some places autistic kids have a much harder time with due to sensory issues and limited social and communication skills. Some families persist in hopes that it gets easier for their child while still allowing other family members a chance to enjoy the outing. That is fine as long as the parents are brave and flexible and have a plan for behavior issues. With that, there are some places it is not worth the stress to me to take my children. Restaurants and air travel top that list. My sons cannot sit. Busy, noisy places bother them. Eric may be OK in a restaurant when it is not busy, it is well lit, we have a seat by the window where he can watch cars go by, and if he happens to be in a good mood. Otherwise they just can't handle it and I have accepted that. Yes, I understand that this limits us. It really stinks to not be able to do some of the things many families do without much thought. It' a necessary sacrifice until we can slowly build our way to these things.

It is really a shame there are not more establishments that are suitable for our children if you want to have a party or a meal away from home. This is why it is also important for their therapy to include community outings and interactions without a bunch of red tape! (sorry, had to get that one in). For now I am hoping in time there are less limits in our life, but ready if that don't happen.

Eric's First Day of Camp

2009-08-10T16:08:00.003-05:00

He had fun, I think. He will get a tent. That will be nice for hiding in :-) I am going to have to work some things out with them as far as eating and bathroom are concerned. He would not drink out of his straw cup so I think I will have to bring the orange one with premade CIB and some cheerios. That is an easy fix. He would not use their bathroom, or let anyone change him. He came home to me soaked. At first I thought they may have went swimming with him in his regular clothing. Didn't see swimming on the itinerary. I am going to have to send his swim trunks, and some extra sets of clothing. This not wanting to be changed thing, that has to be worked on. I am going to take him into the bathroom there right at the beginning with one of their workers to hopefully make that happen. Other than that it went good from what I was told. He seemed happy there but was saying bye bye when he saw me. Easter Seals is great working with these kids and I am sure we can work this out for the next 3 days. The overnight, I don't feel as secure about this now. It isn't going to happen until these 2 issues are sorted out. Thankfully it is not too far away on the chance it just don't work out. I think this will be a great experience for him once we get this other stuff taken care of. Waiting for a call back from the camp director.

I don't really know how his therapy is going to work out with all of this. His late afternoon therapist shown up about a half hour ago to work with him for 2-3 hours. The senior called and asked me if camp was this week. I've been telling them about this since I knew. She said she would ask if some of his therapists could work later. Never got a call, but this one shown. Don't know how the rest of the week will work out. I was told he could be short on hours this month so we are going to have to make adjustments there. Plenty to keep us out of trouble. It will work out.

To Be Able To Unlock Their Minds...

2009-08-10T13:03:00.002-05:00

This story is so amazing. I'm so glad to hear Eric learn to speak. There is so much he, Andy and all these children are capable of. It's just so sad that their bodies and minds won't let them utilize it.

Note, this is an ABC News story. There are ads, and be sure to stop this once it's done because it goes directly to the next story after.

Here Are The Pics

2009-08-06T09:08:00.015-05:00

Here are pictures of what Eric has been up to and the progress he has made. This may be easier to see and not as long as the slide show. This has the highlights, and a few that didn't make it to the slide show. Enjoy :-D

Eric ready for the 4th of July parade. I wonder how long he allowed all that stuff to stay on him...

At the grocery store to learn about healthy eating and nutrition. This wasn't going to do much for him, but he likes walking in the grocery store.

His trip to McDonalds with his school friends. Obviously he didn't eat anything but he sat well and was happy there according to his teachers. I did cut out the other children since I could not get permission from the parents, but he is very happy here with his classmates.

Touching and playing with the collection of bubbles.

Wearing a baseball cap. He was touching it and wondering what it was, but he didn't throw it off like he would in the past.

His golf outing with his therapist. Too bad we can't do this anymore due to stupid rules. Oh well, it was fun while it lasted.

Drinking out of his straw cup!!!

Splashing with brothers in the kiddie pool

The clippers made it to his head without a fuss. He was actually laughing at times because it tickled.

He put the spoon full of cheerios in his mouth ALL BY HIMSELF!!!

See mommy, I can do this, when I want to ;-)

The results of the work with the clippers.

Eric Summer Updates In Words

2009-08-05T19:49:00.007-05:00

There is plenty of great news to share. The summer schedule of therapy is intense, but so very worth it. He had a great time with summer school. That ended last week, he has this week off and next week, camp!

His progress verbally and with language is very impressive. He can request almost anything, politely. I've seen him use sign too, especially at the table when eating. He will say "I want to eat" and sign drink, close enough :-b He also signs me and more quite frequently. When he wants cheerios he points to the box and says "cheerios". If baby brother has one of his toys or is in the way he says "go Jon Jon". Andy's name is a little harder. Maybe because it is mostly Jon that tries to interact with Eric that he can more easily remember. He will call me mom on prompt or repeat, but not on his own yet. I'm in the process of making PECS with pictures I have taken of our family members, favorite toys, everyday used objects, ect and making picture schedules. All the boys respond very well to pictures. I have all the pictures taken, now if I could get my computer and technical issues straightened out I can print and finish them. Once they are done I will post pictures of the final product. We ask Eric how he is, he says good, then asks how are you. I will say good, then he says good. All that just came out as of a week ago. Last week we had his appointment with the psychologist. While we were waiting for our turn the child who had his appointment before us came up and said "Hi I am (his name) I am 6 years old. I heard him saying a lot more as he was leaving with his mom. I said to Eric, someday you will talk just like him. The senior therapist heard me say that to him. The next day they taught him how to say what that little boy said to him. They prompt him with "what do you say" and he says "Hi, I'm Eric, I'm 7 years old". It's so cool! Just this morning he said to me "How are you mommy" I said "good, how are you Eric" he said good. That is a first for calling me mommy on his own! He has to have the same sequence of words to prompt and he always uses the same words, the same way all the time. Yes, it does sound a bit robotic, but I can live with all of that. Just hearing him talk more means so much to me. At school and during therapy they are bringing out the Vantage to try to unlock more language. He really is not that interested in the machine so there is no concern of him getting dependant on it like some had concerns about. He tends to pick up more from hearing people talk and the therapy.

While we still have issues with him blocking a sippy cup with his tonuge. On the suggestion of Jon's OT I tried a straw cup with him. I bought a pack of the take and toss ones with Lightning McQueen on them. He will now drink water from the cup. His CIB and milk mixtures, not so much yet. We will get there. This will be better in the long run than the sippy considering his age. He will also take dry cheerios off a spoon. This meets some resistance at first,but once he gets the first bite in it is easier from there. Of course he does all this so wonderfully for the therapists. He gives me lip, in his own way of course. I just have to be persistant with him. He had a feeding clinic appointment for next Thursday. He will be at camp then so I called them to cancel and just do his full team appointment in September. I told them of his progress and they were happy with it and we are good to go to see them in Sept. Hopefully if we can take off on this we can avoid the hospital. Him taking the spoon is a big key to getting more of a variety of foods into him.

His sensory tolerance is increasing, especially on his head. He is willing to wear hats now, where he never would before. I was able to cut his hair a few days ago as seen below. That was not pretty to watch, but the job was done, and nobody was hurt. It actually went much better than I expected, and better than it is at the salon. Once he gets used to it he will be fine. I'm sure the comfort of being in his own home helps too. He is now going into the bathroom and sitting on the toilet again. It happened after a very long fight and tantrum one day. He just decided to do it to get us off his case and has without much fight from there. He now has to be retrained in knowing when to go, but that's OK. I'm happy he is willing to go in there again.

This is getting long so I will add the pictures that I was going to put on this post to a new one. Yes, there is a lot to say here. But when it's good news, writing it and reading it is much more fun :-D

Haircuts: Mission Accomplished!!!

2009-08-03T20:14:00.002-05:00

This has been a struggle for a long time. Eric has a VERY hard time with haircuts. There is only one stylist in town that will touch him. Of course she works at a salon where a haircut is $25, and that don't include the well deserved tip! I took Andy and Jon there too, was just easy at the time. It is summer (although the weather don't feel like it...) and the boys hair was just getting so long. Getting the time, and in most cases, the funds available has been a real challenge. Eric's senior therapist suggested that I buy a clippers and she would help me buzz Eric. At first I thought she was nuts. I would leave the salon with scratches and bruises after Eric's haircut. This is not a job to take lightly. She still wanted to attempt it, so I bought the clippers but didn't hold much hope. The plan was to first get him to tolorate the sight, the feel and the sound of the machine. Then slowly get him to accept it on his head. The first day he wanted nothing to do with it. I figured this was going to be a very slow process, and wanted to get something from the investment in the clippers, so I got brave. My first haircut victim was Jon since his hair is the lightest colored so the screw ups won't show up as bad, he is the easiest going and the lowest stakes from what I thought.

Here he is after I was done. He cried some, but did not move much. He really did well. I am not that good at this, but for my 1st time ever doing this, it's presentable. I was actually getting compliments on it. I am thinking these folks are just being nice to me. It was hard seeing those cute curls go, but they will grow back. He is a boy, and now he looks like one. After this I've been wanting to attempt Andy's hair. Today he was in a good mood, and I had all my reinforcements together, so decided to give it a go...

The final results on Andy. He was definatley more difficult than Jon. His milk and the video games did not work. He wanted more than anything to get out of the chair. As time went on he did fuss, but he stopped moving so much. Afterwords I took out the bubble machine and all was well from there :-)

From here I got gutsy. Eric's hair was so long, and it just was not him. It really seemed to bother him too. Since I was able to do Andy I figured, how much harder could it be with Eric. His therapist told me today that he was doing great with the clippers. I knew this was my time. Yes, there were violent tantrums, lots of yelling. I am quite sore right now from his fight. Is it worth it? TOTALLY!!! He really does look nice. Again, close up it is obvious I am an amature at this. But anything looks better than how it was, and more comfortable too. He was mad at me for a while.

By this time he's had it, even with the photo session. I feel bad becasue he's been out of sorts all evening since I did this. I'm sure this was hard for him and took a lot out of him. He will be OK I am sure. I just gave him some extra loving before bedtime. It seems I've been forgiven. Sweet little guy...

With that, I am very glad this job is done for a while!!!

Happenings of Eric Summer 09 In Pictures

2009-07-29T20:56:00.000-05:00

Baby Brother Qualifies for Speech

2009-07-21T18:50:00.001-05:00

This morning we had the IFSP meeting for Jon with the birth to 3 folks. He is much more behind in speech than I ever imagined. Although he will surprise us with saying some things way beyond what he should be, he is still very delayed. I am talking 3-6 months here, Jon is 2 years old. Yeah, not easy to hear. Just when I thought he was doing so much more than his brothers and I had some hope I get this. Starting in 2 days, I will be bringing him to a speech class that is led by a speech therapist and I have to attend and work with him. This will be once a week for an hour. Other concerns were discussed such as his play behavior, the spinning, the toe walking, regression. It was recommended that I start the SSI application process and start getting more evaluations done on him. As much as this sucks I am ready to face it. It's best for him to get this taken care of quickly so maybe it won't progress too far. On the other hand I am really tempted to see how he does with this speech class and go from there. Some ways I am hoping that all of this is jumping the gun. After going through this twice, at least I know what to expect which makes it a little easier. Nothing needs to be decided right this second so I can give it some time. I know I will be guided.

The Joys of Bureaucracy...

2009-07-17T21:07:00.006-05:00

Eric's therapy is funded by a state long term care waiver. This is wonderful in the fact that there are many states in the US where this is not available. I am very thankful that we live here and have this opportunity. The down sides of this are the huge amounts of paperwork, lots of miscommunication, many confusing rules and regulations, and the people who are processing all this paperwork and making all these rules know little to nothing about the jobs that the therapists do with these kids, what the parents have to deal with and autism in general.

I've been fuming about this since it was brought up a few weeks ago. Between not being home, computer problems, sickness and not being able to put my thoughts on this into an organized fashion has delayed my posting of this here. The therapists were taking Eric to the park across the street for the last few months for short times during his sessions when the weather permits. I have put many pictures up here from these outings and there are more stuck on my camera now (due to my PC shorting out the USB transfer cable). About 3 team meetings ago the therapists started talking about what they were doing with Eric at the park. The senior therapist said that going to the park would technically considered a community outing and that forms and approvals would be needed to go. There was some confusion, but the issue wasn't pushed. At the meeting the next week the line therapists were told to not take Eric to the park until the community outing was approved. I thought this shouldn't take any more than a couple of weeks. It took that long for approval for the therapists to attend haircuts. The senior therapist told me this could take months now that the state is involved in this. This is WI folks, winter comes here. It's known for that around here. By that time what good is this going to do? If we had playground equipment at home it would be ok to go out and use it but we can't go across the street to use the equipment at the park because it is public rather than private property. How many homes honestly have this type of equipment? We only have a front yard, not a back yard but this park makes up for that. So for now the therapists can play with Eric in our front yard, or take him for a walk around the block. They cannot stop anywhere for more than 5 seconds or it becomes a community outing. So if he sees a neighbor's dog and wants to go over and say hi that is a community outing. Wow.

The county has been getting stricter about community outings in the last few months, and just in the last month the state is now involved in this approval process. Why has this happened? Nobody knows for certain. There have been many opinions brought up on this matter. The county is standing by this being a "home based program". I get that. The down side is the home enviornment has its limits. There is only so much available here. He gets bored really fast. It is hard to work in the same place for hours without a change of scenery somewhere. But since the scientists have proven that this therapy is most effective for hours in the home enviornment, that is how it written in the rule books. No flexibilty what so ever. In order for the therapy provider to go into the schools in any way shape or form it takes even more paperwork and approvals. That is to limit duplication of services. There again, understandable but it sure makes it difficult when the school, medical professionals and therapy providers can't communicate. Believe me, I have been through that. Not fun. Another issue that has been brought up is liability. There were a couple of stupid people that did stupid things that led to severe injury and death to a child. I can understand that the state, nor anyone else wants to be sued. Nobody wants to see anyone hurt. What I don't get is how they think that these things can't happen while in the home. How is walking around the block any safer than going to a park? Some sicko could come into our front yard and hurt my kid. Yes, I know the park is a public place and you are in contact with all these people God forbid. It still don't make sense that they can go around the block if that is the case.

What is Eric losing out on from this? Going to the park is great reinforcement for Eric and a very effective sensory break for him. What little boy, or any child for that matter, doesn't need some time for large motor work and active play? This makes him happy, and easier for the the therapists to work with him and for him to do what he needs to do to progress. He is also going to miss the opportunity to play and interact with other children, and other people besides his family, teachers, and therapists. This is a taste of what the real world is like, and he can learn about proper social behavior and the consequenses if he don't. The adults that know him and work with him are forgiving if he doesn't wait his turn, or does not play as nice as he should. Other kids will call him on it and not play with him. While that is hard to see, it is how they learn. In the 3 years of intensive therapy they get all of this behavior training but we are told we have to wait until after we are done with these 3 years to go out into the community and use these skills on time and money that is not our own. It's like how we go to school for so many years and are taught so many cool things, but given very little to opportunity to apply any of this to real life. How much do we remember? It don't mean jack to teach these kids how to behave when they can't go out and use these skills with real people in the real world. The state will say that he has siblings in the home for peer interaction, along with school. That's real effective when they are nonverbal and have communication and sensory issues as well. School is for learning, not socializing. They think that anything involving applying the therapy has to be done on the family's time during the intensive phase. That is not easy when Eric is going to summer school, and full day during the school year as far as time is concerned. Never mind that I have to take his 2 younger brothers wherever we go. With another child on the spectrum and a very energetic 2 year old that is not as easy as it sounds.

This is getting long and I got the point across. I know this may look like a petty issue on the surface, and it still may be insignificant to some. I can see how this affects Eric, and is worth fighting for to me. Talking to the senior therapist about my concerns left me quite discouraged because she said this is a very big issue that would take a long time, cutting through a lot of red tape and all and all very difficult to change :-( We can hope right?

I Was Talked Into It

2009-07-17T20:54:00.002-05:00

Eric will be attempting the overnight at camp. We'll never know if he could handle it unless we try. There may be a situation coming in the next couple months where he may have to be able to spend a night without me there so it's a good place to start. The place is close enough to where I could pick him up if it just don't work out. I think I owe it to him to give him a chance although I honestly don't think he will handle it. That will be a night I won't be sleeping...

Eric's Going To Camp

2009-07-16T16:11:00.003-05:00

The acceptance letter came in the mail today. He will be going starting on Aug. 10th through Aug 13th from 10 am to 3 pm. This will be at the local YMCA facility. It will be traditional camp type activities. I think he will enjoy it. On the 14th they are taking the kids to a camp site overnight. This I am very nervous about. I really do not think he can handle this. On the other hand, he does need to be able to cope without me around all the time and learn to go to sleep without me by him. This may be a good opportunity for him but it may be just too much for him. It says in the letter he can opt out of this portion, which I am seriously considering. This camp is covered by a special needs grant and is free of charge for Eric, so that isn't an issue. It could end up being worse for me to handle than him, but decision on whether to take that chance. His teacher works for this program and recommened it for Eric. I know she would not suggest something that would not be a positive experience for him. Too bad I couldn't talk to her about this concern. I left a message with the director and will ask her about how this works, whether or not I can come get him if it just don't work out and if it would be better to just not do this. Either way I am sure he will have fun with the rest of this.

Nutritional Risks for Austistic Children.

2009-07-16T15:18:00.002-05:00

Not that any of this is a surprise to me. Found this article on the Austim News. When Eric was first brought to the feeding clinic at CHW they did bloodwork and found he had a fatty acid deficiency. For a while I was putting cooking oil in his juice and he had to drink it, not nice looking. I can see where this would be an issue for many kids. The limited variety that some of these kids eat don't help matters any. This really scares me for Eric and Andy's health as time goes on. Andy is already chronically anemic. I can't get food with iron in him and he can't tolorate suppliments. The good news in this is the power of Omega 3 fish oils. Many friends, and I swear on these to help with depression and anxiety. I can see them helping with these children.

The Realities of Life With Special Needs Children

2009-07-15T20:07:00.002-05:00

I was able to meet a wonderful woman named Allison Dix on Facebook who wrote this piece on her life as the mother of 3 children on the autism spectrum. The link to her blog is now on the side of my blog under friends and supporters. These are very special children. I love my boys with all my heart. That isn't to say this is easy. I had a very hard time with this a couple nights ago. I know now it is OK to feel that way, to want things different. It is how you handle what you have that counts. We have come this far together, we will make it through this. Thank you Allison for letting me share this with my friends.

Team Meeting 6/17

2009-06-23T17:14:00.003-05:00

Now that summer has started and everyone has more time we are going to have a team meeting for everyone involved in Eric's ABA therapy every week. This meeting will supposedly take place every Wednesday afternoon. The meeting for tomorrow has been cancelled since the senior therapist can't make it. We will see how often this happens. This meeting was a week ago but I think I remember most of it.

Two of his line therapists were present, there are 5 on his team. We waited a good 10 minutes for the others, but decided to get this over with since Eric had a session after this. His senior therapist was there and the person in charge of his case at the providing agency. The first thing discussed was the increase in the amount of words he is using. This is great. He knows the alphabet and numbers, colors, shapes, various animals and animal sounds. Now they want to start working with his pronunciation. We know what he is saying, he really tries but to be understood by others he has to work on pronouncing some words. They will also be working on compliance programs such as come here, and sitting in a chair for 2 minutes. He is doing better with those, but since he is an active boy it is hard. The idea is to increase his attention at a task and staying on track for a longer period of time. His school requested this. The other 2 major issues were haircuts and the cup. I had to cancel his haircut, it was too late, I was too tired that day to deal with it and the money was an issue. The senior suggested I purchase a clippers and she will help me do the job. This makes me nervous, considering how he acts during a haircut and my skills are not the best. I trimmed Eric's hair when he was a baby, after that his dad would not let me do anything with his hair. So I was paying $25 a pop for a haircut. That starts hurting after a while. I am willing to give it a go, but I am not looking forward to it. I guess the worst that can happen is that he beats us up and I create railroad tracks on his head. At that time I remembered the vibrating toy that his speech therapist gave us to use with him. It is designed to be used around and in his mouth to desensitize him and help him with movement to speak. We turned on this toy on and let it vibrate on his head. He had no problem with that. Then a buzzing sound was made with it, that bothered him. After that he did not want the toy by his head. I am sure they will find uses for that device. The cup has been up and down. They think he is using his tongue to block the flow of liquid from the spout, hence him not getting much liquid out and inside of him. They think that is quite ingenious. He knows he will get his other cup because he needs nutrients and hydration, so this is his way of protesting. The next day as I worked with him, sure enough I see him bringing the tip of his tongue under his teeth to his bottom gum and uses the bend of his tongue, or the underside to block his drinking efforts. We are considering trying a straw or a sports bottle and squirting water in his mouth while we play with water, like while playing in the sprinkler. or bathtub while the water is clean. This will be brought up at his feeding clinic appointment on Thursday. I'm hoping if this tongue issue can be resolved we can finish up this cup transition with no problem. Why am I worried that it won't be this easy. Getting back to the feeding clinic, I was asked by the senior if I talked to their dad or anyone else about the care of the other children so Eric could be hospitalized. The case manager told me if we were offered the opportunity, we should have taken it. This set me off. I stayed as calm as possible and firmly told them how it was. Finally they understand I think but I have a feeling this issue won't be put to rest. I wish this would just be left alone!

I will write an update after every meeting as long as time permits and it isn't too boring. I'm thinking this will just be a summer deal since the line therapists are college students and take classes during daytime hours, and have very little time for therapy with Eric being in school full time when summer is over. We shall see...

Summer Is In Full Gear

2009-06-22T18:15:00.002-05:00

Now we have the weather to go with it too. I was thinking that I should have been careful what I wished for last weekend. It got quite hot outside and we either had no AC or very inadiquate window units. It was really hot and none of us were handling it well, and we all were sleeping very poorly. Today the landlord brought in a bigger, better working AC unit. It is much cooler in here, the kids are happier, Eric is much more complient with his work and mommy is in a much better mood. Tonight should be very restful and comfortable for well needed and deserved sleep.

School has been out for the summer for over a week now. Eric will be starting summer school tomorrow. It is a special program called Life, Learning and Leisure, which runs every summer for children in self contained special ed classes and in the cognitive disabilites classroom. He will be going 4 days a week from 8 am to noon. This will go on until the end of July. Andy will not go to summer school. They don't think he will regress through the summer. I've been given a list of things to work with him on. I'm doing the best I can considering I am also busy with 2 other kids, but it will all work out. It's nice spending the time with him. Last month I also filled out an application for Eric for a week long Easter Seals camp that will take place in August on the suggestion of his teacher. It will go Monday through Thursday from 10-4 and overnight Friday into Saturday. This is the part I am nervous about if he is accepted. He cannot go to sleep unless I am laying with him. This would have been a major issue if he had to go to the hospital too. I know this has to be resolved. This would be a better way of trying it. At least this is one night, he will be in town and I can easily go pick him up if it just isn't going to work out. I was told they would let me know by mail whether he was accpted in about 2 weeks, and that was a couple of weeks ago so I should know soon.

We are now on his summer therapy schedule. The hours have increased and is more intensive. Monday through Friday we have therapists here from 12:30 until 6 or 6:30 pm. It is a long day for him. It is going to take some time for all of us to get used to this. He is usually fine at the beginning as long as he has ate/drank and got decent sleep the night before. Usually one therapist works with him for about 3 hours then another therapist comes and takes over. This transition is very hard for him. He thinks that he is done because the one therapist is leaving and is not too pleased to have to work for another one at that time. It usually takes about 10 minutes for him to calm down and get back to work after that. From there it usually goes smoothly. His first session starts right before nap time for Jon and Andy. They have not been sleeping well with them here. Naps have been a bust. This was usually my rest time too, but now that don't work. Now I am going to have to start getting up early to get Eric ready for school It's going to make for a long day. There are times during the week that I have other visitors for Jon or other business while they are here. It gets hectic at times. It's OK, for Eric it is so very worth it. Hopefully the little guys adjust to this soon so they aren't so cranky in the evening. They are taking him outside for a while for many of his sessions, weather permitting. He loves that. We now have our weekends free from therapy. That is AWESOME!!! Don't get me wrong I appreciate what they are doing for Eric when they come here but it is nice to have family time too. We will be quite busy this summer, but I am very much looking forward to seeing Eric progress and for our family to do fun things together.

Vantage Training

2009-06-22T17:09:00.002-05:00

This is the Vantage Light, the electronic communication device that Eric recieved in March. Others sometimes call it the electronic PECS machine, or the talking machine. This was introduced to him as a trial last fall when school first started, before his in home therapy started. He got pretty good with this machine and it really helped jump start his verbal communication. Since he has started therapy he's really taken off with the talking. While he has made a lot of progress, he still has a lot to learn. This is a tool that can help him communicate when he just hasn't mastered the verbal language skills himself yet. The nice thing about this is it seems once he learns the words on here he begins saying them soon after.

While this is a wonderful machine, it is very complicated. I really have no idea where to begin to utilize even half the potential of it. Because of this and Andy always wanting to play with it I've been keeping it in Eric's school bag. Last month the Assistive Technology Coordinator from his school emailed me an invite to a special training for these machines. It is going to take place tomorrow from 9 am to 3:30 pm. Respite care is arranged for the boys and I will be gone for the day learning about this machine and actually talking to other adults. It will be a long day but I am very much looking forward to this. His senior therapist is also attending this training and the machine will be integrated in his therapy too. My hope is to utilize this tool to further help with Eric's communication skills.

When The Answers Don't Come Easy...

2009-06-13T20:34:00.003-05:00

Yesterday morning I took Eric to his appointment at the feeding clinic so they could check his health since we are doing the cup transition. His senior therapist from the ABA provider was also present at this appointment. Everyone is happy with the progress that Eric has made thus far. The opportunity is good to get this job done. The problem is that his weight has gone down and he starts to dehydrate if I just give him the new cup. His consumption has gone down by half. The nurse and the psychologist were concerned about this and told me it was a good thing the nutritionist wasn't there or she would have had a heart attack. Nice... Totally cutting out the old cup greatly increases our chances of success, but we can't let him get sick either. Dr. F (the psychologist that is in charge of Eric's case) told me that there was an opening for the inpatient program this coming week because someone cancelled, so this may be a good time to get him in. The appointment was Friday, and they wanted to admit him Monday! This would have been for 1-2 weeks. This was very short notice. I have nobody that can watch my other 2 kids while we did this. Dr. F said I didn't need to be there all the time since they were really not teaching me any new techniques. Eric has not spent the night without me yet. We live in Kenosha, the hospital is in Milwaukee about 45 minutes away. I can guarantee that Eric is going to be a problem for them at night, and they would be calling me back really quick to come there because they can't deal with him while they have sick patients to care for. They won't let my other boys stay there too, so there is a big problem. I realize that he has to learn to go to sleep at night without me present, but I don't think this is the way to do it. With all of that said, there is no way we can do this right now. I understand that hospitalization is going to be needed to accoplish this goal safely. We can keep trying at home with me and the therapists but it's going to be an uphill battle with frequent appointments in Milwaukee to monitor him. On the other hand I have 2 other children that need me too. This is where this gets sticky and very frustrating.

Once I told them that the hospitalization just was not going to work, Dr. F and the nurse seemed understanding, but said they would leave the option open. They then left and the ABA therapist and I were alone with Eric. The therapist then said that I had an excellent opportunity to get this taken care of and that I should really find a way to try to make this work. She said that he can learn to handle nights without me and that it really is a short period of time. Of course she had to add this was important for his health and that I really needed to do whatever possible to take care of this. I was asked if their father could help with this. Yeah right!!! He resented having to take his precious vacation time and having to care for the other 2 kids the first time we did this last year and basically said this was a waste of time. There was some progress with that hospitalization, but it was minimal and not enough to satisfy him. I can't convince his father that this is important to do whatever necessary, trying to sell this to others so my other sons can be cared for amoung other things such as our house, the bills,ect is darn near impossible. If he had a heart problem, cancer or something else physical wrong with him people would help no problem. It really is not fair, but I have to admit I can see what others are saying. This is something that is hard to understand, and don't happen often. Since this is a feeding issue and a psycholgical issue it's too easy to say that I am to blame. I've been asked if it's really worth a week or 2 in a hospital just to change cups. Again, I understand where these questions are coming from. I have to say that that is questionable. We can try to up the goals to try to make this more convincing later on but that is going to put a lot of pressure on Eric, and me. The therapists will help me with the follow through while they are here but for the most part the responiblity is on me alone. It is just too hard right now. I feel awful about what this autsim does to my sons. I don't need someone implying I am a bad parent because I just can't do this right now. Yes, I know he needs it. That is what breaks my heart. I get so scared that these kids could get really sick and not be able to tell me. These eating issues would really become a problem there. Another family support worker that I have visiting told me if these boys were ever hospitalized for an actual medical issue that they would be calling CPS when I told them what they ate and that Andy was still on a bottle. God I don't need to have those thoughts and fears put into my head! What I really think Eric needs is to go though the KKI program in Baltimore. If I have such a hard time with 2 weeks, 2 months seems impossible. I think they may let me have the other boys there though. I'm going to email my friend who's daugher went through this program and see what she says about it. I still have to look into getting a GI eval done on Eric. The feeding clinic folks think this is entirely a psychological/behavioral issue because of the autism. There are other folks working with us that tend to think otherwise and that physical causes should be ruled out. I agree, but now to find a doctor and a dentist that will work with Eric. That will not be an easy feat. It's getting very frustrating having so many people in our lives working with these kids right now. Everyone has an opinion, but they don't LIVE HERE with me and my kids. I respect their professional knowledge, but I know what is best for my kids and my family as a whole. I get really tired of fighting all this crap all the time.

The bottom line here is that I want to help Eric. I want to fix these feeding issues. This is very important to his health and future. I am willing to do what is needed but it can't hurt the rest of my family. Why does this have to be so hard???

Andy's First Year of Early Childhood

2009-06-09T19:20:00.015-05:00

This morning I went to Andy's school to attend the end of school party, and early childhood graduation party for his class. We got a DVD that the teacher made for the year. Watching it makes me cry. I don't believe he is getting so big. Knowing me I will be crying again when he has to go back again this fall. I am going to be posting some pictures from this and throughout the school year. I finally got some of these scanned in. It was really hard to get good pictures in that gym so those are kind of fuzzy. I'm so glad I was able to attend this with him.

Andy enjoying his favorite toy at school, the kid's computer, with friends.

Andy with his friend Victoria. This picture is just too cute ;-)

Playing with blocks. Interesting, he has no interest in them at home

They started out the end of the year party in the gym. He was very happy to see mommy could come :-)

Andy being Andy. At the time I had no idea what he was after. He kept going after something on the stage. I asked the TA and she told me they had a CD player up on top of those mats. He was trying to get at it so he could push the buttons! That's Andy for you!

Andy playing by the mats with his friends. He would not crawl through that bridge though, but he joined. I'll take that :-)

He gets to ride with the bean bags back to the classroom.

The classs Grandfather tried to hold the grauation cap on his head for a picture. Andy was not having it. These were to help his classmates that are going to kindergarten next year celebrate. Andy will not be going there for a couple more years yet. Gotta love the late September birthday. It really works to his advantage.

What you looking at mommy? This is my man of many expressions.

The wagon was his hangout for the whole time we were in the classroom. There were a lot more people than he is used to in that room. It made him a bit nervous. At least he stayed calm in there. As long as he was content nobody argued him :-)

Eric News

2009-06-08T19:31:00.002-05:00

As seen before Eric is doing great with his new cup. He is getting better with the technique of drinking out of it. He has started asking for his "other cup" (old cup) from the second we head to the kitchen and the whole time we work with his new cup. I feel so bad for him, but we need to do this. He still gets his old cup about 2-3 times a day to keep fluids and nutrients in him. On Friday we will be visiting the feeding clinic to assure everyone this is being done in a way that will keep him healthy. He'll miss his last day of school, but that is OK. His therapists are taking him outside during many of his sessions now. He loves that. Although once this weekend there was an incident where Eric wanted to run a different way than the therapist wanted to go. That led to some major meltdowns. Thankfully he recoverd from that today. For the last couple of weeks he's done awesome during his sessions. When it is good, it is really good. He will do what is asked of him, not much fuss. He is able to sit and focus much better now. For a while it was a real struggle to get him to stay there and work. When it is bad, it is really bad. He will melt down at anything and everything. He won't attend to the task at hand. He will wander away. He would get distracted by whatever his brothers and I were doing down here, or something he wanted to do and would not do what he was asked. The therapist can't even get a full session in when he is like this. It was near impossible to get the needed hours then. These spells have gone for 2-3 weeks at a time. I have found that if he gets enough sleep at night (no guarantee) and he eats before he works with them it goes much better. They actually added a program where he has to sit for 2 minutes. Doesn't seem like a huge thing, but with a physically active child like Eric it is really hard. He's doing very well with this. Now if we could get him to sit on the toilet...He was doing so well with that until Andy started coming in and flushing. Ever since then he will not use a bathroom in this house. He will use the potty at school with no problem. We will get out of these pullups yet. It will defiantely be worked on this summer. Hoping he will just decide on his own to go in there again. I continue to hear more words. Some days he's more talkative than others, but he's doing great. Going outside, no matter how cool it is (which is quite often around here lately) is the ultimate reward for him. He's gone on field trips to the zoo and swimming that I will post pics of when I get them. I'm glad to see him continue to make progress.

When to Consider Other Options...

2009-06-08T17:11:00.004-05:00

This does not involve Eric or Andy, it is about my youngest son Jon. Yes, I will be venting some here, but this is relavant to the topic at hand. I am sure some other parents have experienced these kinds of things.

I am going to start off by saying that I am very grateful for the wonderful services that this state and county provide. Most of the time I don't have any major problems with the services that any of my children recieve. Many parents deal with very few offerings unless they want to pay out of pocket for private, or deal with less than adiquate services. Really, I hate to complain, but this really got to me.

Jon is recieveing early childhood education and occupational therapy from our local Early Intervention/Birth to 3 service. He also has Early Head Start working with him. That worker comes to our home and works with Jon, and I for 90 minutes a week. Jon just recently turned 2, which means it is time for reevaluations, updating plans and goals, IFSP meetings, ect. On Monday there was a meeting scheduled which I thought was the IFSP. The EIP service coordinator and early head start worker came here. I was waiting for other folks to show up just to be told this was "the meeting before the meeting". Ok, what's going on here??? First the EHS worker mentions that I did not take Jon for the floride varnishing for his teeth they were offering, even after reminders and calling me. He was sleeping while this was going on (from 1-3 pm, mind you many children his age are napping then). I am not going to wake him up from nap to get floride applied to his teeth. There were other pressing issues I had to deal with at that time too. Yes, this is a wonderful offering and I have nothing against this being done. I know you have offered it a few times and I never got there. Something else always comes up. It's just me and these boys and have special needs children to boot. Not trying to complain or make excuses, it's just how it is. It just could not happen this time. So sue me. I was told this was my child's health this is concerning. I understand that. No need to confront me and act like I am neglecting my child because I didn't go to this. This was not starting out well. Then the service coordinator told me that they are recommending that I consider private clinical therapy for Jon. I know that speech therapy additon was talked about earlier. There are a shortage of speech therapists so there is a wait. No biggie, it can wait until it is more needed if he falls further behind. The reason why private therapy is being suggested is that they don't think Jon is making much progress due to my lack of follow through with the therapy throughout the week. WHAT??? I will admit I have been focusing more on Eric and Andy lately. Mostly because they have much more severe delays and are higher needs. They have more going on with them rigth now. It is hard sometimes to find the time to get him to play with a toy that he isn't interested in properly. I am able to work with him with the spoon every day and he is getting better, not completely there but much better. She did say that there was progress there. I was just not getting where he was not progressing. He is sitting much better for sessions and is willing to at least try what they are doing. Then it was suggested that I take Jon to the feeding clinic. Why??? There is nothing wrong with his eating. He will eat most of what is presented to him. This was getting absurd. They were told right out that was not necessary. I was told that the IFSP would be in a week and everything will be tried again for a month, and I was to think about everything that was said to me. Maybe I am just a little over sensitive, but why so much pressure on a 2 year old to perform and improve. I guess they have to measure effectiveness somehow to justify the money being spent. If this isn't working then something else may be better. If it was financially possible I would seriously consider private therapy. It is not at this time. I would consider just working with him on my own without them but I don't want to be accused of child neglect. Three days later the occupational therapist came to do her evaluation. It shown improvement in 2 out of 3 areas. One of which was 4 months gain in 6 months time. No signs of improvement??? I am so nervous about this meeting tomorrow. I will be guided to the best decison for Jon. I just wish that all of this didn't happen. Wish us luck tomorrow.

Update On Eric's Cup Transition

2009-06-05T20:28:00.002-05:00

He is doing well with accepting the cup. No, he is not happy about it but he will put the spout to his lips and drink on command. He has difficulty bringing the cup up once it is to his lips and putting his head back to drink without help. Yesterday evening he let me assist him with this, and still is. When I do this he takes his hands off the cup. I don't want to get to a point where I have to hold a cup for him again so I insist he keeps his hands on it. The amount he is drinking is still a concern. I've had to give him his old cup once on Wed. and have given it to him yesterday and once this morning. He will also accept a wet washcloth to chew sometimes. I used this before I gave in on Wed. I work with him with the new cup at minimum 2 times a day on a school day, will more on the weekends. He is now eating cheerios at school. He even accepted multigrain cheerios twice from a bowl according to a note I got. He really is doing a good job with this. The therapists and I thought it was a good idea to work with him a few times a day with the new cup. Use his preferred cup as a reinforcer. It is going to be a slower process than I expected, but most likely better in the long run. Maybe this will make ending the meal on a positive note a possible task. I have been told by both the feeding team psychologists and the ABA therapists not to end the session until he complies and not while he is crying, fighting, ect, only when he is calm. That has been really hard to do since he will comply with the new cup, I praise him and it helps some but he won't be happy until he gets his other cup. I am VERY happy with his progress on this so far. It is now looking like this will be an attainable goal.

NOTHING Stops This Boy!!!

2009-06-05T19:33:00.013-05:00

Who cares if he has a cast on his arm? He's had it over 2 weeks now and has handled it so well. If he wants to do something, he will do it! As I always say, his persistance and resourcefullness is really going to help him through the challenges he is going to face being on the autism spectrum.

Waiting for the school bus.

He HATED wearing this stupid sling. I don't blame him. That thing was a bear to adjust. It just didn't fit him right, and it hurt him when I had to mess with it.

He was happy to be going to school this day. They did send him home soon after he got there because they needed a release from a doctor for him to be back in school. He did seem uncomfortable and in pain later that day so it was for the best. I finally got a call back from the orthepedic doctor that day and was able to get him in a couple of days later. They did another xray and found a crack in the bone near his elbow. They had plans of casting it anyway because there was evidence of some type of fracture or injury there and he would not know to take it easy with that arm. The xrays were the worst part of all of this because they were painful I am sure. He did fuss some when the cast was put on, but it all went well. I thought he would like blue so that's what I chose.

Here he is modeling the cast. I had a heck of a time getting him to pose for a picture, he kept wanting to run around!

Of course he has to play with the computer!!! He is stuck with the laptop here since a power spike blew out my PC . Not too thrilled about that.

He can still find trouble! I caught him with my cell phone AGAIN! This boy has an obsession with phones.

He LOVES his bubbles!!!

How do you do this Andy???

I was SO impressed with this. He is still able to pick up and throw this ball. It took him a few tries, but he wouldn't quit until he got it!!! We were outside with Eric and his therapists during a session. One of the therapists is going to school to teach physical education and adaptive phy ed. He was amazed by this. He also said that both these boys would be good for Special Olympics or a Challenger League team since they are so active. Don't know if he was just trying to flatter me, but if anyone would know about this kind of thing, he would.

I LOVE this picture of Eric and Andy. It was so beautiful I just had to add it :-)

I'm tired out mommy! It's sleepy time. Don't know how he can sleep in this postion, but he found a way.

He will have the cast on his arm until his appointment on June 12th. He will then have more xrays to make sure all has healed and hopefully we come home cast free.

He's Taking Sips Out of His Big Boy Cup!!!

2009-06-01T22:50:00.002-05:00

I hid his soft spout sippy cup that he would only drink out of. His therapist asked me to make his Carnation Instant Breakfast in this cup, just acting like nothing is different. I did it. He was not happy at first. There were tantrums, but we persisted. He started putting it to his lips and taking small drinks. Yes, there was plenty of protest but he was doing it. We had to lay on the praise and keep telling him to drink. We waited for him to calm down before we ended the session. That is how they always did it at the feeding clinic. They said it is best to end on a positive note. We did the same thing one more time with the therapist here, he was a little better. Then I tried it twice this evening. First time was ugly, but he drank a little. Second time is shown in this video. I was able to ask him to say "all done" when he was finished and then allowed him out. He did not actually drink much, which concerns me a bit. I will have to talk to the feeding team people about that. But I am so proud of him for putting his big boy cup in his mouth and taking some sips. He will be off that old cup in no time if this keeps up. Way to go Eric!!!

ABA Therapy Takes No Holidays

2009-05-25T15:29:00.002-05:00

Nor does it observe Sundays either. Yesterday he had 2 three hour sessions. Today he had therapy from 9:00 until noon. They came back at 1:00, staying until 6:30. This is a very long day for Eric. So far he is handling it very well. Taking breaks outside definately helps :-) He has been on an off here lately when it comes to tolorating therapy. The last couple of weeks have been good. The 2 weeks before were really bad with the tantrums, ect. I've found that it helps if I feed him well before they start. It goes better when he sleeps well at night, but that can be hard to control. I wish I had a solution to that one! Eric will be going to summer school for a little over a month. It is 4 hours a day, 4 days a week. They will try to bring his therapy to around 35 hours a week. These long days are something we are going to have to get used to. It seems as if Eric never gets a break, but I know in the long run it is worth it. He has made so much progress. The hard work is really paying off. Way to go Eric!!!

The Wait Is On!

2009-05-23T10:53:00.003-05:00

On Wednesday we got a letter in the mail from the county and state. Andy is on the waiting list for the waiver that funds the in home therapy. He is number 235 on the list. The estimate wait time is 1 year. He will be able to start therapy before he starts school full time. That is so awesome. There will be more time to work with him. I have learned a lot since going through this with Eric. That was such a long process with so much miscommunication to get him on the list. Then he had to wait 18 months for the funding. With Andy, this is a piece of cake. He is going to get the help he needs in a timely matter. That makes me feel so much better.

My Persistant, Resourceful Little Boy

2009-05-23T10:15:00.007-05:00

Here is my son playing with his ZAC Browser. He has a splint and sling on his right arm because of a fall he had Tuesday night. Does this stop him from finding a way to do what he wants??? Heck NO!!! This boy still finds his ways to make trouble and get what he wants. Being cute is definately his advantage :-) He is doing real well with the molded splint. The sling, he's not too crazy about. Not that I blame him. It is really hard to keep that on right and it has to be adusted all the time. It hurt him when I had to move his arm into the right spot in there. I will be glad to be rid of that thing. The only time he fought at the ER was during the xrays. He even let them put the splint on with very little fuss. It was after 3 am at that time and he was so tired I don't think he cared what they did. He would lay down when nobody was working with him and try to go to sleep. Mommy was feeling the same way. Too bad I had to get up at 6 am with brothers. We attempted to send him to school on Thursday. He was sent home because he needed a release from a doctor to attend school, liability concerns. The orthopedic doctor's office finally called me back Thursday afternoon and set up an appointment for late Friday morning. Normally Andy don't handle doctor's offices well. He is in a real good mood considering he has a hurt arm. We get there and he is fixated on a large fish tank in the waiting room. He was engrossed in the fish the whole time we waited, which was a while. This was our savior for this whole appointment I think. Yes, there was some crying again with the xrays and when they cut off the sling and put on his new cast. There was a chip at the end of the forearm bone. He will wear his blue cast for the next 3 weeks. I got so many pictures of him in the cast, doing the same things that Andy always does. It was hard to keep him still to get good pictures. The bad news is that the transfer cable got fried with my PC on Thursday so I can't get them uploaded until next week when the cable is shipped to me. I am so proud of how Andy has handled all of this. If there is anything that will help him through his challenges in life it is that he lets nothing stop him. He finds a way to do what he needs to do. Way to go Andy! More pics will be added once I can :-)

Andy's IEP Meeting

2009-05-22T20:12:00.007-05:00

Andy's IEP meeting took place last Friday. At first I was wondering how this was going to go since he was all upset about not going to the bus after they put him in the wagon and brought him out to the hall. Seeing me, having the computer all to himself and sitting in the wagon playing with it wasn't enough to stop him from crying. His routine was changed, so he got upset. He did calm down after about 10 minutes and me holding him for a bit. I was finally able to meet the wonderful speech and occupational therapists that have been working with him for the past year. Andy has made great progress this year. He is starting to use a few words. I've heard him say "eat", "go", and "tickle", at school they've heard him say "dah" for milk. I've noticed him saying the words for the last 3 weeks. He uses a voice output machine at school. His is much simpler than Eric's. He has learned the eat and go buttons on that machine. One day when he wasn't feeling well he kept pushing the go button, saying he wanted to go home! They have "hi friends" programmed into the machine so when he sees the other kids at that school that love him so much he can say hi to them! Andy is very popular at school. The older kids will look him in the eye and talk to him, sincerly. At first he was uncomfortable with this attention. Now he eats it up! Life is great when you're so cute :-D Andy now sits with his friends during circle time and snack time. During snack they stopped trying to get him to drink out of a cup and try different foods. They are letting him eat cheerios or crackers for snack so he will sit with his classmates and eat. The focus on the social training is important here, along with him tolorating sitting for a short while. The other issues can be dealt with at home or at the feeding clinic. There are very few changes being made to the IEP itself. There will be a different structure to the Early Childhood classroom at that school. This is going to change into an integrated classroom with a regular and special ed teacher, one assistant and a larger number of kids in the class. There will be 30 minutes added to the school day. It is still a half day, 4 days a week so it's not much of an increase. That extra year will help him.I hope he will be able to handle this okay. He's impressed me with how quickly he's adjusted to school and the great progress he has made. I don't want to underestimate him so I will not make an issue of this unless problems develop. Next year he will be going into the pre K class. He really has an advantage with the late September birthday. His speech will be be increased from 45 min a week to 60 min. I know, still not much but it's the best the school can provide. There were a couple of issues that were debated a bit...

Andy loves this wagon. At first it was needed for transport because he had problems walking around the school for any distance. He would get frustrated and drop to the floor. He's too heavy to carry. This is not needed as much for transport, but it makes it easier to get him to and from the bus since it's such a long walk. He uses this wagon as his place of comfort when he needs a break. The occupational therapist would like him to go to a corner of the room or find another source of comfort. She would like to wean him from the wagon. The teacher, and I don't want to push the issue. It will be available for him if he needs it, just not right out there all the time. I really don't see why there would be an issue for him using this for comfort. He is also recieving very little OT because his tolerance is low. I would really like to see more than 60 min a month. It doesn't seem that they are doing much sensory integration work with him. She wants to focus on fine motor skills, writing and coloring in particular. These are needed skills, but I don't think the whole focus should be here. He will be starting ABA within a year, they can focus on self care and some of the sensory stuff. With the limited time they have, I guess I can't expect much. The meeting went well. With all of this we were in and out in a little under 45 minutes. We are now ready for the new school year for Andy :-)

Autism Awareness Decals

2009-05-06T10:12:00.003-05:00

This is the autism puzzle symbol made out of vinyl. A good friend of mine made this after another friend requested this. Both of these wonderful ladies have a child that is the process of being evaluated for an autism spectrum disorder or Asperger's Syndrome. This is their way of spreading autism awareness. She has this along with other custom lettering and drawings can be created with vinyl and put on walls or windows for home decor, or on car windows. More information is available on her blog. You can also click on the Vinyl designs button on the side of my page. She has the best explanation of vinyl lettering and decor.

Eric Meets Woodsy The Owl

2009-05-06T09:26:00.002-05:00

Woodsy the Owl visited Eric's school yesterday. His slogan is "Give a Hoot, Don't Pollute" from what the teacher wrote on the back. If anyone knows any more about Woodsy please let me know. No offense Woodsy, I am sure you are a great guy. I feel it. I just don't know you. I am not too good at keeping up with all the characters the kids get into.

Now to the point of me posting this. I never seen Eric go anywhere near a person in a character costume. He wanted nothing to do with anything like this. Too see him get this close and actually touch him was shocking. It shows how much more Eric is willing to branch out and show interest in others. I'm proud of you Eric!!!

Here is Where The Action Will Be Taking Place

2009-05-02T16:33:00.003-05:00

The therapists requested a table or desk that they can sit Eric down to work at. I have a couple of children's chairs that the Birth to 3 folks gave to us from their graveyard. Otherwise I had no children's furniture in the house. It was a space and financial issue for a long time. The table thing was brought up again during Eric's IEP meeting. They are hoping this will help with him sitting at school and staying on task with is work if it's done at home and during therapy. The special health nurse at Eric's school found this desk at the large yard sale in the subdivision that the school is in. She called me and asked me if I wanted it. Of course I accepted. I offered her the $ it cost, she would not accept it. I put the bin of supplies in the area, and Eric's new therapy space is born. Now they don't have to go in various bedrooms to do the therapy. In most cases they prefer not to use bedrooms, to keep them as a "safe spot" for the kids by not asking them to do work in there. Once you get to the top of the steps just turn left it is right there. The bathroom is right across from there. Not like he will go in that one or anything, but the door will be open and light on just in case.
What does Eric think of this ?
He is very fascinated with the marker holder, it spins around. He may not look too enthused in this picture, but he went to sit down voluntarily. Take that as he likes it :-)

Thank you Mrs. Thompson!!!

Meetings, Appointments and Other Eric News

2009-05-01T11:15:00.005-05:00

There is a lot to catch up on with Eric. This is another long one so relax with your beverage of choice and enjoy :-) Two Mondays ago we went to see the psychologist in charge of Eric's ABA therapy. This is called the lead therapist. The state mandates a meeting with this person along with Eric's therapy team every 6-8 weeks. Of course this could not be done during Easter vacation and Eric has to be present at the meeting. I had to bring him to school later that morning. Not real happy about that but oh well. This meeting turned out to be quite stressful for me. This psychologist was very concerned about Eric's eating, or lack thereof. I can understand that. It is obvious this man has never dealt with a situation like this before and eating disorders are not his specialty. He kept saying this was abnormal and that someone was not doing their job with Eric. He offered no viable solutions. This was making me very upset to say it nicely. There are no quick easy answers to these problems. It is going to take time to get Eric off that cup and eating more foods. I cannot force the issue no matter how much he thinks I should. Introduction to anything new has to be made as positive as possible or it will not work. They are intensifying the eating and oral tolerance programs. This psychologist could not believe that Eric has never seen a dentist. It is not easy to get an appointment at a dentist that would suit Eric's needs. They did give me a list of dentists that work with special needs children, but I doubt any of them put them to sleep. That is the only way a dentist is going to get into Eric's mouth. I would not be surprised if he has tooth pain. He won't let me brush his teeth with toothpaste, just brush and water. That could be contributing to the feeding problems. This psychologist also thinks there might be something physically wrong with Eric to cause him to not want to eat. There is a pediatric GI doctor on the feeding team and he don't suspect any issues. Once I get to the feeding clinic appointment I will say more on that. I was so glad to get out of there.

This brings me to his feeding clinic appointment which was 3 days later. I will keep this as short as possible. The psychologist there said that none of the issues that the other psychologist brought up would cause severe feeding problems like what Eric has. She's worked with many autistic children with this problem so I am sure she knows what she is talking about. Then the topic of totally breaking him from his cup came up. He has to get some nourishment. We have tried to take it away before and it don't work. He won't give in even if there is no other option. With that said, he would need medical supervision through this process. That would most likely mean another 2 week inpatient stay. I have to set up an appointment with his whole team (psychologist, nutritionist, SLP, nurse and GI doctor) to discuss possible physical issues with his feeding and whether it is safe to attempt the cup breaking/spoon intro at home. If we have to go back to the hospital most likely it would be in the fall or winter due to a waiting list. That would be difficult form me with my other children. I know their dad won't watch them. On the other hand I think this is what is needed. The psychologist said that if inpatient was needed they would work with me on all that. We will cross that bridge if and when we get to it.

Eric's IEP meeting was a week ago. The draft is all set, and we should get the final within a week. This was a long meeting, but it went very well. I am so happy with how much he has progressed in many areas. The obvious is his speaking. That has just exploded. He is now more willing to sit and do things such as art projects, ect without tantrums. He is willing to try writing now. He's got the routine of school down so well now. I could not ask for a better progress report. He tends to do more at school than he does at home. We have to work on that. We now have more tools for the therapists to work with such as mouth massagers, picture schedules, and social stories. He will be going to summer school again this summer, which he really enjoys. He went swimming with his class yesterday and had a blast! Will post pics of that once I get them.

My Little Computer Whiz?

2009-05-01T09:52:00.006-05:00

Andy loves the computer. He has a fascination with any electronic item that has buttons, lights up and makes noise. I have to keep my cell phone out of his reach at all times or he will go online with it and buy games, or call God only know who. The computer seems to be his favorite thing right now. Mostly he likes watching Youtube videos, anything with music in it. He has started getting into Facebook, as shown here. He started typing a bunch of random letters and numbers in my status and making comments with the same type of thing. I had people asking me if I was OK and if I was trying to ask for help. Didn't mean for that to happen. I am watching him much closer now when my computer is on. That is still hard to do. He goes on this machine with a purpose. He uses the mouse and keyboard quite well, the mouse in particular. He knows where to find the Youtube videos I have bookmarked for him and Facebook with no problem. He knows where he wants to go and gets himself there. Andy may be autistic, but he is smart. He still knows what he wants.
I recently installed the Zac Browser for Andy. Now he can play with the computer and not get into trouble :-) He loves watching all the videos on there. So does baby brother Jon, or he likes most of them at least. There is one video on there with Cookie Monster singing about the letter "C". It starts out with a cow mooing. Andy now moos too when he sees and hears that. It is so cute. The problem is that Jon absolutely HATES that video and cries every time he hears it. Don't know if he is tired of it since it has been played so many times, if the cow mooing scares him, if he don't like Cookie Monster's singing or what. This is a frequent argument in this house now. I am glad to see him have fun with this and imitate the cow mooing :-)

Updating ...Andy invaded my Facebook page again. He put up at least 30 status updates for me. Little smarty pants was quite busy. I was waiting for Eric to come home from school and I will admit I was getting a little sleepy from running around cleaning all day. At least he kept this in tact! It's all cleaned up now. I'm glad he gave my friends a good laugh. Gotta love cute little ones :-)Picture of the damage...

Andy Updates

2009-04-26T12:21:00.002-05:00

It's been a while. The report from his autism evaluation in January finally came in the mail yesterday. It only took 3 months! The day we went to this appointment I was quite sick with the flu so I honestly don't remember much that went on during this appointment. I knew he got his official autism diagnosis that day. Now that I have the report and see the details...wow! This is really hard to read. The doctor really could not do much testing because he would not cooperate, and he didn't have the communication or the social ability to do so. Andy just wanted to do his own thing. There is no purpose to the things he does other than to stimulate himself. If you try to stop his behavior he just ignores you and persists with what he wants to do. She said that Andy basically saw people as objects. There was no attempt at eye contact, vocalization or interaction. He has extensive delays in expressive language, communication, fine motor and social skills. I am talking in the infant range here (6-12 months) . Other findings included impairment of nonverbal social interactions, failure to develop developmentally appropriate peer relations, lack of spontaneous attempt to share enjoyment, interests, ect with others, lack of social or emotional reciprocity, lack of developmentally appropriate imaginative play, preoccupation with a few certain things and patterns, parts of objects, and stereotypical repetative motor mannerisms. The doctor did the CARS test on him (Childhood Austism Rating Scale) and he scored 45, which is moderate to severe autism. These results came out as Andy being lower functioning than Eric!

This was not pretty. With Eric it was apparent something was wrong from the get go. When Andy reached 16 months we started to lose him. He slipped quickly. He went from having a few words and learning more to mute. He stopped eating many different foods. His attempts to interact with anybody just stopped. He became much less tolerant and flexible with his surroundings and schedule. It is so heartbreaking to watch this happen. There have been some improvements since then, especially with school. In other ways he continues to drift away from us. We have a lot of work ahead of us. The good news is we know where to go to get help and the whole process. Now that all of this is in writing he can get on the wait list for the services he so needs. Monday morning I will be calling the county coordinator to make sure she has this information, or to make sure she gets it. I will also be showing this to the therapy provider. They know that in time they will be working with Andy too. Now they can see what they are dealing with. It really is too bad we have to go through all of this but now we know what to do and can get down to business. I have to say I am very impressed with all the links and resources this doctor suggested in this report. She really does want to see Andy get help and is providing us with potential sources for that. He has a wonderful teacher and assistant. He gets speech and occupational therapy through school but I don't know how much (don't think it is much more that an hour a week of each) and I never met the people that are providing that. While I would love to get more for him it is impossible to do that without paying an arm and a leg for it. His IEP meeting should be before school lets out for the summer. Since he started later because he didn't turn 3 until 9/27 I am not sure how this will work.

I know this is getting long but I wanted to mention that Andy was seen at the CHW genetics clinic last month. That was an interesting appointment. I could not believe all the questions! Then we had to go to the lab so they could get blood and urine for the testing. That was not fun, especially with the urine. Ewww...that was a mess. They are starting with simple tests on just Andy. If nothing comes up they will try to get insurance approval for the more extensive testing. If something is found Eric and Jon will be brought in too. So far we have not heard anything and we were told it could take a month to get the results from the first tests. We will be seen again in 5 months and go from there.

That was a lot to catch up on. While this looks bad here Andy is still a very sweet, lovable boy. I will keep updated on all of this as we go through this with him.

Our Latest Outside Session

2009-04-25T17:20:00.007-05:00

We got a taste of summer yesterday. Therapists were over scheduled for Eric yesterday so we had 3 at the house to work with him. One stayed home with his brothers so I could join with him and the 2 other therapists this time! It's too bad we could not spend the whole time out there. We went to the park across the street. I found out that we had to have a community outing form filled out and approved to go on the playground equipment, so we hung out by the trees and the lagoon, on the other side. There was plenty of sensory activities we could do there.

Eric standing on a log. It took some convincing to get him to do this.

Throwing sticks into the lagoon, or at least trying to. His throw got better after a few tries. The therapists worked on taking turns while each one threw a stick and he had to wait for his turn, and actually do it when the time came.

We were finally able to get him to sit on the grass. Before he would only sit on the therapist's lap. She is still right behind him. He would not let her move too far.

This is what ended this outing. For starters, I have no idea how he can sit like that. It looks painful to me. He kept picking at some dry skin on his lip. He was told to stop, but he wouldn't. That must have really bothered him. Once I got a good look he had a bloody lip. Ewww...how he could do this to himself. It didn't seem to hurt him. He was sucking the blood too-yuck!!! Eric has a very high pain tolerance. This is very common for kids on the spectrum. He came back into the house with no fuss or tantrums. That is so awesome for him. Before he would go into full blown meltdown when he had to come in from having fun outside. More progress, we'll take it!

The Ultimate Motivator

2009-04-25T17:15:00.004-05:00

This was the reward for working so hard earlier that day. Both boys go nuts over bubbles. They were so happy here that I could not resist posting this. I love it when Andy is allowed to join Eric. Let him in for the fun stuff and maybe when his time will come he will adjust quicklyThis ties with the small stress balls for a close second place. Eric calms quickly and is so grounded when he sits on the exercise ball. We are going to try this upstairs while the therapists work with him to see if it will help him sit and attend to what he needs to. His brothers love it too. A universal hit for sure, one of the best investments I ever made.

Progress, Slow But Sure

2009-04-25T16:25:00.005-05:00

When I heard the therapist doing the kiss the cup game I had to get up there to see this for myself. Normally he will put the cup to his lips really quickly, take it away, make a kissing motion and give it to someone or put it down. This was the first time I ever seen that spout inside his mouth, and for long enough that I could take a picture. If he keeps doing this we will get off that old cup.Eric is learning how to put on his sock. Most people don't think much of this. Eric has a hard time coordinating the process. He remembers thumb, thumb pull and repeat it plenty. It is a little harder for him to do. He's getting much better. Next will be shoes.

Updates on Eric

2009-04-12T18:21:00.002-05:00

It's been a while. We changed providers recently and with the changeover there was not much being done. Then Eric got sick and had to miss 4 days. These folks have done a good job in transitioning him in and carrying on with his treatment. He's starting to take his verbalization to the next level. They present him with a magnetic letter and ask him either the color or the letter. Before he was just saying whatever he wanted. Now he is telling them what they request. They will ask him to count to an odd number like 17, he used to keep going as long as he wanted now he knows when to stop. One of his favorite phrases is "I want tickle please", one day, out of the blue he said "I want ball please" he will now say that for car, book, hug (and he will hug me now too :-)) and eat. Wow, he is starting to associate. It's even more impressive that he did this on his own. I will say "how's Eric", he always says good, but he is getting the idea. When I picked him up from school on the day he was sick his said "hi mommy" when he seen me. I wanted to cry! He calls me daddy sometimes too, maybe because it easier to say. That is going to be interesting to explain...One step closer to being able to talk with him. There is still a lot of repeating me. There were a couple times when I slipped and he repeated words that I didn't want him too. Oops! He's been sitting better and much calmer during his sessions most days. For a while we were having a lot of problems with very bad tantrums. He was not sleeping well at the time, and it was quite crazy with the previous provider. Thankfully that passed. He was doing great with the potty, even verbally requesting to go! I thought we had him out of pullups during the day until he got sick. We've lost some ground, which is not unusual when this happens, but working on it again so he don't regress too much. We are loving the Kiss the Spoon game. He will hold the spoon to his lips for up to 2 minutes. The cup, well he will still hold it without throwing it in my face most of the time. That still needs some work.

He is off today because of the holiday. Yesterday we attempted to color eggs. Eric's baby brother thought they were balls and threw and broke most of the eggs. Most of the time he just wanted to watch me do it, but he did eventually dip one in. That one got saved from Hurricane Jonathan. I'm glad to see him participate in something like this as he never would before.

All in all he is doing fabulous! Keep it up Eric!!!

Outside Time

2009-04-12T12:50:00.005-05:00

Yesterday Eric's therapists wanted to take him outside for a little bit. Honestly, I thought it was a bit cold out to do that but gave them the OK. It is April and the temps are in the 30s and 40s. Definitely not spring weather. They took him to the park across the street, just in the open area. I stayed with my other 2 boys so one of the therapists took the outside photos.

Putting on his shoe. Eventually he will figure out that it helps if he puts the shoe and his foot down and uses both hands. He will only use his right hand for this and many other things for some reason. This much I know, he is not a lefty like his mom.

This is when I got why they wanted to go out in this cool weather. There is not much reason or incentive to keep a hat on when it is warm outside! Getting Eric into winter attire for the really cold days is a struggle to say the least. I put a hat on him, he would throw it off right away. I had to fight him with mittens, and they never stayed on anyway. His school was having some concerns about this so it was built into his therapy program. Eric kept the hat on the whole time he was out there!!! WOW!!! This is big for him. His head is so sensitive. The mittens will be next, but we have to desensitize his hands before we have a prayer at that.

Here is another surprise. Usually when I take Eric outside he just wants to run around, go on the slide in the park, or touch cars. He wants nothing to do with sand, dirt, grass, leaves, ect. I was amazed that he was willing to touch and hold this stick!!!
This outing did not last long because it was quite chilly outside. He came back in without a major meltdown! Wow Eric you are doing great!