Sunday, April 26, 2009

Andy Updates

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.

Saturday, April 25, 2009

Our Latest Outside Session

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

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

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.

Sunday, April 12, 2009

Updates on Eric

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

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!

Motivators and Tools

Here are some of the fun things that we keep in the therapy bin as motivators to keep him working, and to calm him when needed.

One of the universal favorites, the squishy ball. These are so soft and smooth. Great stress reliever. These are well loved their use-by Eric and Mommy and it shows! VERY ADDICTIVE!!!


This is another type of sensory ball to hold in his hand. These feel cool too,but Eric tends bite holes in them so they don't last long.

Another crowd pleaser-bubbles. Many of us have lost our breath with these. Very dangerous around Andy...he won't let you stop blowing without a full blown tantrum. All the boys love a bubble show. A great friend of mine suggested a bubble machine, which I am going to purchase in time.

What little boy doesn't like making a lot of noise. The toy instruments are also very popular.

Eric's favorite toy car. It turns into a robot I believe. This was one of his dad's old toys. Eric found it and has been in love with it since. Used as a playtime reward and to learn colors and words.

His favorite book. He can look at this for a long time. This is used to help him stay focused, and learn new word and how to read. He has read some parts of this book out loud. This was initially given to Andy by his teacher because he liked it so much. Now the other 2 boys have taken possession of this. I've never seen Eric take in interest in Arthur before, but whatever works. I just hope this book don't end up in pieces like most of them have around here.

Magnetic letters and numbers. Lately they have been asking him to specifically tell them the letter/number or the color. He used to give the color when asked the letter and vice versa. Now that is a cake walk for him. The next step is starting to put letters together to make sounds and words.
There are also some not so interesting items such as flashcards, crayons, ect that they use too. Andy loves the therapy book. He always wants to play with that. Don't understand the attraction, but fear not he should have one all his own within one to two years!

Saturday, April 4, 2009

About Eric and Andy

This was the first entry I posted in this blog when I started it in January, with some updates from then added. I have invited many others to come read this so I want them to see their stories if they wish. Since this is Autism Awareness Month I figure there is no better time to get to know my 2 wonderful boys. Ten years ago I never understood what autism really was. Never did I think I would have a child affected by it. I now have 2. While this was not how I visualized my life, I would not have it any other way. I have met so many wonderful people through my children. The best things in life don't come easy...

My oldest son Eric was born July 26, 2002. He was one of a kind at birth. He had to come out to the world facing up which made mommy work very hard to get him here. After 4 hours of mom pushing and assistance from a vacuum extractor he came into this world. Sleep was definitely not his thing. When he would sleep it would only be for about an hour. He never completed his newborn hearing screening because he would not sleep. Eating was not his thing either. It took him a while to get used to the bottle thing. Eric always loved looking at moving objects such as fans, and lights and color like on the TV. He spent much time laying on the floor kicking his little legs. He couldn't care less about looking at people. He had severe reflux so he was not the happiest little guy at times. He had these spells that the doctor told us was from the reflux. It looked like he was having a seizure when this happened. There is no way of knowing now. During Eric's first year we were taking care of his elderly grandmother in her home. I also suffering from postpartum depression, but did not realize what it was until I had my 3rd son 5 years later. His birth also puts some questions in my mind, but there is no way of knowing for certain or proving anything. It does not matter now. I already wasted more than enough times on dwelling on the "what ifs". Beating myself up over what should have been just got in the way of finding and getting the help Eric needed. God put him on earth for a reason. When he was 6 months old the pediatrician started talking about developmental delays. His dad and I were in denial. I honestly thought that many of the behaviors he was exhibiting were normal for babies, so I didn't think much of it. As time went on he was still unable to sit up or crawl when many children his age were walking. He made no attempts at verbal communication, not even babbling until well after his 1st birthday. He would concentrate intently on toys and objects, particularly moving objects. People he had no interest in whatsoever. Eye contact was non exsistant. He started getting very picky about the food he would eat. This is typical for babies and toddlers so I thought no big deal. Relatives started noticing and remarking that this was not normal. When he was 14 months old Early intervention came in and evaluated him and he began physical therapy shortly after. He never progressed with that, and occupational therapy, early childhood instruction and speech therapy were eventually added. He learned to walk at 17 months. He never learned to speak. He still has many sensory integration issues. There were many meltdowns. We could not take him out in public because he could not tolerate noise and crowds and screamed. He was not flexible with his routine at all. His way of playing was spinning car wheels and lining up toy cars, mouthing objects and kicking and flapping his arms to show he was happy. The list of foods he would accept became smaller and smaller. In time he would only accept cheerios to eat and fruit juice to drink. We had to work with a feeding clinic to get him to a point where he would tolorate oil in the juice, eventually milk, then pediasure and now Carnation instant breakfast and yougert and baby cereal mixed with milk and strawberry syrup and a cracker in his mouth. When he turned 3 he started attending the early childhood program with the school district. He went there for 2 years until he started kindergarten. He is now in 1st grade going to school full time and loving it. We have a few words he uses consistently now. His behaviors have calmed down considerably in the last 2 years. He is more social now. At age 3 he got a diagnosis of global developmental delays, possible mental retardation and possible PDD-NOS or autism. At 2 months shy of his 5th birthday he got the official autism diagnosis that qualified him for the state medicaid waiver for in home autism services.

Andrew was born September 27, 2005. For a short while he did not want to come down after mom was fully dilated and a cesarean was considered when there were heart decels. Stubborn Andy finally decided to come down on his own and was born after about an hour and a half of pushing. Andy was a better sleeper from the get go. He actually finished and passed his newborn hearing screening. He was a better eater too. Andy and I bonded very quickly. He was so responsive. Finally I was seeing how a baby was supposed to act. He seemed to play with toys more appropriately and loved the company of people, especially cuddling. He was never big on baby food but was eating table food that mom and dad ate by his 1st birthday. Everything was looking great until the Early Head Start worker suggested an early intervention eval for Andy at about 14 months. After the first evaluation he did not qualify for services but was going to be watched by EHS and the EI service coordinator. Andy had a few words at this time and did not seem to resist much. At 16 months Andy started refusing many foods he previously ate. He started refusing a spoon and sippy spout cups. He lost the words he had. He started stimming, toy walking and becoming less socialable like Eric. He started walking around aimlessly most of the time and showing many repetative behaviors. He was not adaptable to different situations anymore. Two months later he started with early childhood instruction and occupational therapy. Speech was added a couple months later. While all of this was unfolding I learned of my very unexpected pregnancy with my 3rd son, and his birth June 6th, 2007. After this birth I went through another bout with postpartum depression. This time I was properly diagnosed and treated. I also had a round after I lost a pregnancy in September 2008. I am still on medication and in counseling for this and to help me through this journey with my sons. Andy made minimal progress in the birth to 3 program and is now attending early childhood special ed preschool and is loving it. We took him to the CHW developmental clinic for an evaluation and got the same generic diagnosis as Eric did. The only reason we went this route is that we wanted to rule out any medical reasons for their difficulties. Andy saw a neuropsychologist in January and got the official diagnosis that will quilify him for state funded therapy. Now we are just waiting for the reports. In March Andy and I saw a gentetisist and started testing. If anything comes up with him the other boys will be tested then too.

This has not been an easy ride. Seeing the progress that Eric has made already gives me hope. These are special boys and I was entrusted by God to care for them. I would not trade it for anything in the world.

Friday, April 3, 2009

Autism Awareness 2009

Autism Awareness 2009

Thank you for finding this Kym. I know you wanted this on your blog, how I did it is posted in FB. Video was created by Angels For Autistic Children ™©

A Picture Says A Thousand Words

I was quite shocked at how little was mentioned by the media and elected officials about World Autism Awareness Day yesterday. This will tell anyone anything they need to know.