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.