An Update on Matthew...

As most of you know by now I took Matthew to to see Dr. Karen Lee (child psychiatrist) and Dr Eugene Schnitzler (child neurologist) for some developmental testing on Tues Feb 19. I was able to view the testing, but I was behind a one way mirror, that way I could see and hear what was going on but could not influence Matthew's answers. To make a long story short we first saw Dr Lee and she played a series of games and asked Matthew several rounds of questions. Then we were off to see Dr Schnitzler for some other testing. His tests consisted of a lot of bending and touching, dexterity manipulation, and eye hand coordination. Paul and I will have to go back to Springfield on March 6th for the evaluation results, this will be without Matthew. Dr Schnitzler wanted to have an MRI performed for him in conjunction with one that is being done by the Otolaryngology for Matthew's sinuses, however the insurance company has denied that portion of the MRI. No big surprise there. So Paul and I have decided that at this time we will not be continuing any more testing for the HFA, the tests are very cashy and to be quite frank we just don't have the money to do it. So like all the other parents with children that have this disorder we will do as much research as possible and do what we can with him here at home.
On the flip side of the coin, we also had our meeting with the school for the possibility of being able to receive some services through the school system. It was about a two hour meeting and we had to go over matthew's entire medical history. Basically now it will be sent to the schools co-op service to be reviewed for any services he may be eligible for. The only problem is they are running 60 days behind, that puts at the end of April and school is only in session until May 16th. So needless to say they are not really going to get anywhere this year, and unfortunately after this year he will not be eligible for school funded services. We are incredibly frustrated with this, but unfortunately we have thrown our fits and spoken our minds and it has just not gotten us anywhere. Paul & I will do everything in our power to do what we can for him here at home, and pray that we can do enough to help him become the productive member of society we see in him.
After meeting with Dr Schnitzler I had a lot of my concerns confirmed. He told me that he was deeply disturbed that at the age of 3 1/2 Matthew was diagnosed with a sensory overload disorder, did not develop speech properly until 2, had a horrible screech as a means of communicating his anger and frustration, rarely played with my daycare children, and did not make eye contact with people and yet this diagnosis was never considered. Those issues I just listed, my friends, are all the criteria for an autism disorder. So, yes, it HAS been looking us in the face since he was a baby and yet it went undiagnosed. It deeply saddens us because if our doctors had been on the ball this would have been diagnosed at an age when therapies would have had a lot better impact on him. There is something called an autism window, it is when the diagnosis needs to be made and therapies begun so that the quality of the child's life will be better. That window is between the age of 3 and 5, Matthew is now 11. How sad it is that this slipped through the cracks and that this child did not get the help that would have best benefited his life. Now at the age of 11 it is like everyone keeps telling us that nothing is going to work because he is too old. Well how do we know when we can't seem to get any of the therapies started. It is like they are giving up without giving it a chance. It is extremely maddening. I thank God every night that Matthew does not have regressive autism and has not been lost forever. I can't help but to think about all the parents that do have children with more severe cases of autism and them not getting the help they need either, whether it a too late diagnosis or an insurance company not willing to pay for the services needed be it testing or therapies. It is just really sad that this is what our health care system has come to.
Sorry to have vented here, but I just wanted our family and friends to know how we are feeling and that we are not giving up. Matthew is extremely smart (he tested at an 11th grade level on almost everything but writing that he only tested on a 2nd grade level, he is in 5th grade this year), and as loving and compassionate as a child with any autism spectrum disorder can be. He is our son and we will fight for what he needs, we aren't going to just give up.

Posted on Tuesday, February 26, 2008 at 10:35AM by Perchalski Family