Monday, September 26, 2005

HE IS Not Fine Period


ARRRRGGGH! Now, I need to vent about somethings, but I am weary about how it could be taken. I really need to know that I am not the only person out there that is dealing with this. Here goes........ I am so @@###!!!! tired of hearing from family that Gabe is fine and he will grow out of this "Autism" stuff. They stare at me blankly when I talk about the wonderful strides that Gabe has made in the first month of ABA therapy. I have heard that he is just a "little behind" and that this ABB...or ABBA....YES! ABA therapy has been referred to as ABBA...like the group!!!!! That the "quack" stuff I am doing can NOT possibly be helpful and that my husband and I are wasting our money on "helping" Gabe, because they honestly believe that he will just "catch up". One person said,"I knew someone whose daughter didn't talk until she was 3 years old and just started talking in sentences one day." Are these the new Urban legends. *****POOF! ****Autistic children everywhere will turn around and and magically grow out of it . Gabe is on the mild side of Autism, in fact he is very smart and tested so. But, he screams Autistic when you say "Hello" and wave and he looks right through you or anywhere else around the room. He sometimes AVOIDS eye contact unless you get in his face. There are so many more signs that he is clearly PDD-NOS, but I digress. He is as Autistic as his hair is brown. Why can't they see that? Now, most of you may say in their defense that they are trying to be supportive. Maybe, but to turn and look the other way and hope when you turn around that the "BIG A" will be gone is like putting a carrot on Gabe's plate. It will never be eaten and it will never go away no matter how much you say "MMMMMMM...GOOOD..GABE....YUMMY CARROT."
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Why is Autism such a dirty word? Don't tell your insurance company that your child has Autism because they will soon have to "evaluate" your claims. The school system will try anything not to provide a curriculum that is specific to Autistic students, because it is too expensive ( Want to add services to your IEP - cross your fingers or get a lawyer.) People do not know what to say when they find out your child has Autism, except "I'm sorry" and then followed by "What is Autism?" It is an epidemic, Autism, and people do not know the signs????? How many more people are being told what I was, that their children will just grow out of it. It scares me to think of the children not getting ANY therapy or services because of lack of support. Very scary indeed.
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One last thing and I swear that I will get down off this pedestal. I am going to let the next person have it if I am asked whether Gabe was affected by thimerosal or if I believe he genetically developed Autism. Now, coming from other parents that have children out there that have children with Autism, I will happily share that information. I think it is important to share our experiences. However, a lot of people outside our realm, if you will, believe that thimerosal couldn't possibly be responsible for Autism. Hell, THEY don't have Autism and they had the same shots (We know that our children had more and in a shorter time span). Now, I have to add that Gabe is genetic, we have traced it to my brother and had A LOT of tests done, but it pisses me off to no end for people to make idiotic comments about something that they have not spent, weeks, months and years researching. Most of us know more than our doctors. We are continuing looking for answers while our pediatricians meet at a conference to discuss the most important topics that concern their practice and at the top of their list is not Autism. So, why the hell do they think they know more than us???????????
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Just needed to vent....not offend...just where I am at. If you have an opinion, feel free to post. But, remember that my son is 2 years old and was only diagnosed 6 months ago. I am fragile to harsh criticism. I am wading through quicksand here and my head is barley above water.