Team Meeting 6/17

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

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

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...

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

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

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...

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

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!!!

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!!!

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!!!