Wednesday, August 11, 2010

Disconnect

Last season on TV there was a new show on called Parenthood. I really got interested in one of the story lines because it revolved around a family with a child who had Aspergers. In one episode the family did a walk for Autism. It is like my brain started making clicking sounds.

Click...My son has Aspergers.

Click...This means he is Autistic.

Click...I don't know what this means.

I have had more time to just wait around in between packing and have been looking into the blogging community at large. Looking at design blogs, mommy blogs, and just recently looking to see about blogs with mom's who have children with Aspergers. As I have been reading through some of the different blogs that I have come across, all of these issues are being presented. Things like advocacy, rights, and how to fit into the world of Autism when you have Aspergers. Aspergers is an Autism Spectrum Disorder but it is so individualistic that one does not fit all.

In my case, Alex is considered "High Functioning Aspergers" so I can't even get a 504 or IEP in place to make provisions for things at school. He isn't savant smart, but is so far ahead of his peers that he is bored at school. Yet even with all of this in my mind I don't think of him as "disabled" in anyway. And there is this huge disconnect in my brain. Alex has Aspergers not Autism, yet one is the same. So how do I navigate this weird half world where he is disable, but he isn't? Is my disconnect denial or me just not realising that even though I have said the word "Aspergers is an Autism Spectrum Disorder" I just did not link that that meant that Alex has a form of Autism?

Mostly though I am just worried that I don't know enough and that if I don't get a puzzle piece on my blog or purse or my whatever that I am not really standing up for the needs of my son. On a side note when I asked Alex where he wants to go for his mission, he said Hong Kong or China. I guess when you feel foreign in your own skin going to some place like Hong Kong on your mission wouldn't be all that foreign.

3 comments:

housewife said...

Or maybe he just wants to go to Hong Kong or China

Nana S. said...

.....or maybe he is just a little too young to even know what "going on a mission" really is since just going to school right now is "mission" enough. Stacie, there is help for Alex and each of you to help him navigate through life. Bonnie Lee Varga's (Sheri's son Jay Louden) is Autistic/Cerebral Palsy and will be entering Middle School in Florida this year. I feel quite sure there are support groups in Idaho that can help you. Shall I ask them? It cannot be easy to have a child with special needs and I am sure you are doing all that you know how to do at this time. The more you know about the condition, however, the better you will be about helping him along the way. Keeping you all in our prayers. Much love and many hugs, Nana S.

AJ said...

I kinda understand how you feel. Tim had a rough time in school, but they could never find what was causing his trouble. He wasn't bad enough to get special help, but not good enough to do it alone. Very frustrating. Fortunately, Tim is very dedicated and never gave up at anything he tried. I'm also facing that same frustration with my gluten intolerance. There is nothing out there about gluten intolerance...whether it's an allergy, intolerance or Celiac's disease it is all lumped under Celiac's.

As for the mission...Tim always said he wanted to go to Canada...and that's where he is.