My Children

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

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!

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...

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

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

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

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

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...

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)

I'll Take Being Pulled Along for This!

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

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...

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

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...

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!

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...

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

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

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!

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...

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

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

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

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

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

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

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

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

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...

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

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

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

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.