Tuesday, March 18, 2008

When Are They Gonna Come to MY house?? ... and .... Doom and Gloom of Autism Diagnosis

One of Harley's favorite shows is Extreme Makeover Home Edition.  They make the coolest houses and bedrooms. He especially LOVED the Lego room they made a season or two ago...So for the last two weeks while watching the show (can't miss it ya know?) he asked "When are they going to come and make my house and MY room?".... He and I mentioned to Nina, Harley's speech therapist that it was Harley's favorite show (he's learning te meaning of the word favorite).  He was so excited and asked me the question again so she thinks that we should download the application and have him work on it...She thought it was the cutest most original request...So keep your eyes out in the coming months/years...Harley just might do the application (Nina's pretty set on giving it a shot) ... You may see us on TV??!!
Which brings me to another thing that came up two Sundays ago watching the show. I mean I appreciate the people that were selected, trying to keep VA history intact and being a veteran and all...BUT...They did mention at the beginning of the show that one of the children were autistic.  Me, being the advocate I am for all children with disabilities was drawn to watching this child and his reactions...I was pretty darned upset...This kid was basically being dragged around and never given any chance to give input...So what if he doesn't speak...there are other ways to figure in his needs and desires...It seemed that with all the antiques and etc. that the parents 'treasured'...they forgot about this very special chlid...It just seemed to me that all the focus was on the antiques and there was rarely any mention of what the children would want...or any input from the parents on what the kids would want (in the case of their non-verbal child)...I was pretty upset by it...Just be glad I didn't blog about it right away, which I had a mind to do!! I just have such a hard time when parents receive a diagnosis like that and don't even attempt to work with the child or figure what it is he needs/wants to overcome his short-comings--they simply accept the diagnosis and the 'expectations' that go along with it...It's heartbreaking!
As an example...When Harley was first diagnosed we were told to never expect him to learn to use the toilet.  Granted he didn't actually stop wearing diapers till he was 7 years old, but he IS using the toilet.  (Although not in the 'traditional' method...he sees a need to 'hug' the toilet as he uses it....we won't get into that)...Although lately he has been having a lot of 'accidents'...just forgetting to go to the bathroom!!  We were also told to not expect him to speak...sure he didn't say his first words till he was 6 1/2 years old, but we worked diligently and in teams with therapists and teachers and other parents for many years and it was the sweetest sound when he finally said "mom" for the first time at 7  years old...it melts your heart even more to realize that I heard those words at all, after being told not to expect ANY words from this child!
OK, now I'll get off my soapbox about the doom and gloom' around the diagnosis of autism...It is very nice however to look back over the years and realize that all the tears, hard work and rearrangement of schedules and behaviors were worth the effort in what we see vs. what we were told to expect!!
I can truly say I have been blessed to have Harley placed in my care and as my teacher in life!!

1 comment:

Ruth said...

Amen, Tracy! I didn't see the show, but the people had to have known that that sort of upheaval in a child's life(let alone a child that has challenges) is hard for them to adjust to. I'm sure they didn't go back later to see if the child was adjusting well or if serious problems were created. I hope Harley DOES fill out the form and y'all can get a makeover of your home. I'm sure if you get chosen, you will get a call about what you would like done. If that happens, stress to them that you would like all of your children's' voices heard. It's their home too :-D
If this goes through, I wanna know when it is so I can watch it!