Thursday, April 14, 2005

Dear Noah: (Your formal evaluation day)

Well I guess I did such a good job sending in Noah's past medical history and film clips and sound clips etc...that they did not need to do too much more today at the actual physician's office. She did check his muscle tone...which we already knew he had low muscle tone in his upper body as well as other parts of his body...but we had been told it had improved since he had overcome many of the obstacles he used to have problems with. Apparently Noah still has pretty severe low muscle tone.....upper grip.....chest.....all over...but mainly upper body. She said he basically had no upper body muscle strengths/tone. We already knew this and have been working on things but had backed off a bit as we were told he had improved. Guess not. Keith has no upper body strength/tone either though. However..she also noticed he had oral motor skill problems which means he cannot move just his tongue without also moving his entire jaw...etc....or move his tongue properly....his jaw/mouth properly....and that combined with his sensory integration issues definitely affects what he can eat or will eat. SO he will need intense occupational therapy....I am sure a lot more than what he had been getting before which was only 30 minutes per week. He seemed to be right handed but can do things with both hands...always been a problem for him as he cannot make up his mind which hand to use. However...she believes he will be right handed and is....but he has more problems with his right side/hand.

He still has a pretty bad speech language delay....she called it severe but we know it has improved. still exists...and she said he needs intense therapy there too. Probably again more than the 60 minutes he had been receiving (we now have him doing 30 minutes ever day here at home).

They did say he has MANY signs and symptoms of MANY different things...but he DOES INDEED HAVE AUTISM. He does NOT HAVE Asperger syndrome because Noah did not even try to start talking till he was like 3 years old. You have to be able to talk really well and very very early with Asperger syndrome. We knew that part never fit but some of his teachers had wondered if he had it. So he has autism. She said he has many symptoms and characteristics of many PARTS of the autistic spectrum disorder classification....and she does NOT just single a child out with autism as having like high functioning autism or pervasive developmental disorder or ADHD or Asperger or any of the like 7 different parts of the spectrum his symptoms could fall into. See...Autistic Spectrum Disorder is like a huge umbrella and all those other more specific labels/diagnoses fall under the umbrella. However....they all also (bits and pieces from each) can make up the big umbrella. Kind of confusing...but basically it just means he has AUTISM. SO....we already suspected that so that was also no really new news.

They DID notice he had a heart murmur on his exam today...a pretty obvious one. The other woman in there helping also heard it. Noah's pediatricians have never mentioned it before. I have mentioned to them before how he will stop sometimes and say his heart is beating...and I tell him that is good cause it has to beat....but he goes on and on about it. That I know is not normal and I was going to take him back to be checked. I know his heart can really pound away sometimes. So.....we have to take him to a have his heart checked. He could have problems with a valve or something causing the murmur. If have to be careful when kids get infections or go to the dentist and things like that as any infection can settle in their heart and attack it and then if you get cardiomyopathy there is nothing you can do other than have a heart transplant. So you have to take preventative antibiotics or antibiotics early with infections...etc. SO he will have to see a cardiologist and have an echocardiogram done. We will go from there on that.

She noticed some things about his feet...his middle toes seeming to be connected to a point I guess....Keith and I do not have toes like that.....things that correlated with the low muscle tone...same with his hands and arms....etc. His ribs were flared...signs of low muscle tone....She noticed his right eye was a bit smaller than his left..which we had already mentioned....and she said he sometimes seemed to be squinting it shut and looking mostly with his left eye. While he has better than normal vision she suggested he be evaluated by a pediatric ophthalmologist. So we will see.

ALSO...she said it was best if they could do genetic testing to see what caused his autism. Only about 20% of the time however do they actually find out what caused it. However..IF they can find out....they know how to treat those kids better cause they know what types of therapies work better for them. Not sure how accurate that is but she is the expert so I guess she should know. far we have not had much success with the so-called least not in the public school system.

As far as what to do now...we go back to his pediatrician who will need to make all the referrals for the other physicians and therapies. We will end up having to decide where to send Noah for his therapies or HOW to provide those for him...etc. Some our insurance covers and some would be out of pocket and very expensive. However..if we cannot do his therapies somewhere closer than downtown at the hospital all the time I would seriously consider checking into them coming to our home. They don't really provide you with a MANUAL of what to do and where to go once your child is diagnosed with autism. She asked if I had any questions but really after all the research we have done what is there left to ask? so.....we will have to do more searching and check into where would be the best place for him to get his therapies and what he will need. His pediatrician might be able to refer us to someplace...but they have to specialize in autistic kids. That is hard to come by it seems. SO we are kind of back where we originally were as far as the end result goes. We will still have to check into things and find out where to either send Noah or how to supply him with all he needs here from home or somewhere close by...etc. She agreed he will need social skills classes/training. Autistic kids can be taught.....but it is extremely time consuming and you have to do constant over and over play acting. She also stated right now Noah REQUIRED a lot of movement (which again we already knew). She could not believe they were not letting him have recess at school. She said that was something that should never be taken away from him. I told her we have him out pretty much every day to run around at the parks and to play and move....and are on the go a lot. He requires a lot of movement just to make up for his sensory integration issues and his low muscle tone/occupational issues and his autism. She said it was easier for him to just keep going full speed all the time rather than stopping and restarting and stopping and starting. We already knew that and keep him busy and always have something else ready for him to do all the time. She said if he was not always given something else to do next he could get into trouble and snickered. Again we knew that as it happened apparently at school all the time. She was not surprised to see us bring in a backpack for him with all kinds of things he could keep doing. Right now she said everything he does has to be done in a hurry and kind of out of control. She asked him to draw a picture and he did it in like 5 seconds. It was a picture of me. Good but very fast and erratic. The goal is to teach him to be more slow and to be in more control and take more time with things and handle transitions better...etc. He is doing better with all that at home but today in her office he was at his limit within 1 hour. She got to see first hand how he can be...right down to his sounds..etc. BUT at least she GOT IT. She was not too surprised to hear that Jefferson County our school district...did not do what they should have for Noah. She said that was the same district that when she said a child had Autistic Spectrum Disorder...they would still call to ask her WHAT the diagnosis was. She would say..THAT IS THE DIAGNOSIS. SO...they don't get it. AND they don't really have trained staff and personnel to deal with autistic kids. was not a lot of information we did not already know. He has great memory skills and can repeat things and some will THINK he has gotten something....but in reality he has not. It is time consuming "ACTING out" that actually teaches him she said my doing the social stories with him was great....however...we will eventually need to broaden that out and let him interact with a few peers....till eventually he might be able to handle working around larger groups. Right now however...he just cannot handle it....and she agreed if he was running away from the school and the playground while at school or leaving the was not the safest choice for him NOW anyway.

So............guess that is about it. She examined him.....mostly muscle/neurological stuff. He has some deficits...we knew that. He has autism. We already also suspected that. He has speech/language delays...we also knew that. He has a heart murmur...that we did NOT know. His eye issue...we knew about his right eye being smaller and him looking/squinting at things with the left we did not really learn anything much new. However....we basically GOT the "official" diagnosis, which I guess will help us to get any therapies he needs. Many we could not take advantage of before because he had no official diagnosis.

SO taking each thing a day and step at a time. Noah has made great improvements but still has a long way to go.

That is what we found out today.

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