Wednesday, August 19, 2009

Pity Party

If the previous post seemed scattered, it's because the author's brain is totally scattered. There are likely items that I didn't even mention in The Decision post that were important and considered. Is there any way I can improve and help him? I am trying not to feel sorry for myself - but that feeling still pushes through every now and again- will it ever leave? Shouldn't I be grateful for all we have? What's that line I always used to hear "at least I have my health." Well, for Zach, we don't have his health. He has a disease.

Living day to day, a necessity, sometimes gives you little to look forward to when you have a child with an unexplained disease and no predictable future. When there are good days, you feel like you climbed Mt. Everest and when they are not so good, things feel as bleak as if you are on the Titanic.

The fact that that this is a neurological disease - something currently acting on my child is probably the hardest part to deal with. I keep on thinking, and hoping, that in 20 years, they will have this all figured out, causation, remedies, the whole business. But it has taken 35 years for them to just get over that this is actually a real disease, and not the lack of love and attention of mother's for a child. How absurd is that?

Maybe that's what I need to emphasize - autism is a disease. Yes it is called a disability, a disorder, and no it is not some contagious, communicable thing, but it is an abnormal condition that impairs bodily functions, and has specific symptoms, thus a disease. The bodily organs and systems affected? The brain mostly - I don't think many people would argue that this is a neurological disease. However, others might chime in with digestive organs the "gut", some would say that it is in the muscles citing weak muscle tone and motor planning issues.

OK - the prognosis - this disease called autism will not likely result in Zach having a shortened lifespan.

Prognosis for Autism: People with autism have normal life expectancies. Symptoms in many children improve with intervention or as the children age. Some people with autism eventually lead normal or near-normal lives. ... Although there is no cure, appropriate early educational intervention may improve social development and reduce undesirable behaviors. People with autism have a normal life expectancy. ... Autism varies a great deal in severity. The most severe cases are marked by extremely repetitive, unusual, self-injurious, and aggressive behavior. This behavior may persist over time and prove very difficult to change, posing a tremendous challenge to those who must live with, treat, and teach these individuals. The mildest forms of autism resemble a personality disorder associated with a perceived learning disability. ... Symptoms in many children with autism improve with intervention or as the children mature. Some people with autism eventually lead normal or near-normal lives. About a third of children with autistic spectrum disorders eventually develop epilepsy. The risk is highest in children with severe cognitive impairment and motor deficits. Adolescence may worsen behavior problems in some children with autism, who may become depressed or increasingly unmanageable. Parents should be ready to adjust treatment for their child's changing needs.
(Source: excerpts from National Institute for Health, National Institute of Neurological Disorders and Stroke (NINDS) Autism Information Page)

My favorite line from the above excerpt? " a perceived learning disability" I never would have known what that meant until I met Zach. One of our greatest concerns was with retardation. To this date, all cognitive testing done on Zach shows him to likely be in the retarded category. But to meet him, spend time with him, hear him once in awhile count to 20, match colors, play a computer game - you just feel that there might be something up with the test and indeed there is. They anticipate that a child can communicate and imitate - Zach cannot do either particularly well. But does this make him retarded? I think it just makes him a pain in the ass, but possibly a smart one at that.

Medically accepted comorbidity complications: Epilepsy. Personality disorder. Depression. Psychosis. Neurosis. Not to mention learning disability and behavioral problems.

Does everyone feel self pity like this? I don't remember the "woe is me" feeling being so frequent as it is now. I pray that I can get over these feelings more quickly so that I can act the way that will be most beneficial to all involved.


Raising a Happy Child said...

I think you are too focused on "the worst case scenario". After all, the article also said, "Some people with autism eventually lead normal or near-normal lives". With the fierce determination that you have, Zach future might actually end up on the bright side of autism equation.

Melissa H said...

I just blogged about this. Amazing.

Focusing on the "worst case scenario" is absolutely typical and we ALL have gone through it. ALL of us. I promise you that! It has been said that our grief is akin to losing a child, because we have lost the child that we thought we had... and it was replaced with this child that we do not know at all. We don't know what to expect, we don't know what progress, if any, our children will make. Will they play baseball? Go to prom? Get married? Live independently?? (any of this sound like an echo from your brain?)

I can't tell you how to get through it, personally, because everyone has to do it in their own way. What I can tell you is that, from my experience, 3 and 1/2 years later? I look back and am amazed at my child and I wish that I could have spent less time panicking over therapies and treatments. Conor has done things in his own way and on his own time, but he has done them.

Oh, and the "retardation" thing with the testing: You are dead-on and I even had a psychologist from Conor's preschool tell me that this is the case. The testing is not appropriate for our childrens' challenges at that age. He is not cognitively disabled, Leanne. He is autistic and he will learn in unconventional ways because his brain functions differently. We are all so programmed to believe that Different=Bad. I am here to tell you that I have a 7 year old who is living proof that it is NOT.

kristi said...

Hi! Melissa sent me over to your blog.

I try not to "go there" but sometimes you do, and yes, it is normal.

Gosh, we have been dealing with autism over 2 years now. There are hard days, I won't lie.

I try to take it one day at a time and not worry too much about TC's future.

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