I want to introduce to you all, my wife, Lizze. She’s an admin on this site but rarely ever posts. I asked her to post this today because I really, really liked what she had to say. I think that it’s an important message that may apply to many of us. If you want to read more of her writings, please visit her blog at www.mylifebeyondlabels.com.
So Gavin has been having a more difficult time of things lately. Which makes me sad, not just as a mother but as his mother. Gavin is like a bead on a string – forever moving, forever changing…nothing is ever the same with him. One day he’s high functioning, full fledged Asperger’s-type behavior. The next he’s lower functioning, and acting more like a stereo-typical Autistic child,
Then when you add his schizo-affective disorder, OCD, PTSD, ADHD and bi-polar into the mix…he’s a very complicated little guy. Because of his complications, which seem to be mounting as the months go by (we’ve recently added seizures (which are continually getting worse), primary immunodeficiency, and dysautonomia), it’s been discussed at great lengths among his entire health care staff (pediatrician, psychologist, psychiatrist…right on down the line) realistically what Gavin’s options are as a teenager and then an adult.
Unfortunately, it’s been decided that realistically speaking his best chance at a life with any kind of independence is going to involve Gavin living in a group home. While I don’t like the idea of my baby in a group home. Actually, I hate it. Despise it. Loath it with every fiber of my being. I also know that it is Gavin’s best chance at “normal”. His best chance at doing as much of his life himself, with a little help from the workers in the group home.
A conversation I had with Gavin the other day about his future led me to wonder…am I a…
“Loving, supportive parent” or “an barer of false hope”?
Gavin came to me the other day and he wanted to tell me what he wants to be when he grows up. He would like to be an author and “an amusement park designer”. There is no doubt in my mind that if any one thing were different he could absolutely reach those goals. However, he loses IQ points every year. He has far too many disorders, illnesses, disabilities stacked against him for him to be able to make it on his own. Well, that’s not worded exactly right. It’s not the diagnoses themselves that will prevent him from being entirely independent. It is the manner in which his diagnoses present with Gavin that will prevent him from being entirely independent and make a group home necessary.
Truth be told, if he wanted to work at the local gas station for the rest of his life…if that’s what he discovered that makes him happy, then I would be over the moon ecstatic with joy because he had discovered a job/career that he both excels at and it makes him happy. I honestly don’t care what that job/career is.
But when he looked at me and for a moment he was my sweet little Gavin. My big doe-eyed little boy from before. Before the nasty divorce from Nick and the even nastier custody battle. Before the Autism took over. Before the bi-polar/schizo-affective disorder started riding shot-gun to Autism. Before the OCD, ADHD and PTSD jumped in the backseat while Autism drove like a madman through town.
It was that little boy who asked me, “Do you think I can do it, Mom? Do you believe I can be and author and an amusement park designer?”
And I was that Asperger’s Mama. Locked in the Land of Black and White. The Mama who knew I was likely giving him false hope. But all he wanted, all he needed was to know if I thought he could do it. Did I believe in him? How was I supposed to tow a fine line at that point? Hell! How was I supposed to find a fine line at that point?!
I wasn’t and I couldn’t so I did what Mamas are supposed to do. I gave him hope. In my own, Aspie black and white universe way, I gave him hope. I just pray we can find a way to balance his drive and desire, my hope and a very healthy dash of realism to help us all survive.
Yeah, you've gotten some great advice already. My wife has to tell me regularly when I get frustrated at the lack of progress with our 4yo PDD-NOS – we don't know what the future holds. Look at Carly Fleischman (  ;http://carlysvoice.com/ ) unable to speak at all, discovered the computer and is now able to communicate with her family (and wrote a book with her dad). You guys are going through a nearly uncomprehendable amount of stuff and I'm praying for you guys daily. All you can do is love your children, encourage them and equip them.
It is very important to encourage him. You don't know what the future holds. They may find a solution to his problems. If everyone discourages him now when things look badly, the damage of that is irreversible.Being an author requires a very narrow skillset, and almost no social ability. So, that is purely dependent on if he has that skillset and actually enjoys the task. People with autism tend to have a disconnect between written language and spoken language. This means that his spoken language ability has little to do with his ability to write.Many of the greatest authors have had severe psychological, developmental and/or physical disabilities, but it has only improved their writing. It is a very narrow skill that you can never tell if someone has unless you read their writing and know how to look for the potential.This is all the luck of the draw, having the skill-set, the opportunity, and the drive. As of an amusement park designer. It purely depends on what part of the design. General layout requires visual processing, and some practical critical thinking about crowd flow. It tends to lay on the art side of things. It again is a very narrow skills and minimal social interaction, none of which is formal. This skill requires the sort of narrow ability that only certain people have.On the other hand ride and building design requires far more intellectually intensive tasks, because it combines both visual and mathematical thinking types. While computers will help these days with the calculations you still need to be able to know what you can do to change the behavior of the ride if the numbers don't come out right, as one change in one place affects everything else.
You did exactly the right thing. If you don't support him and bolster him, who will? There will be enough people telling him the limits of what he can do.
If you like David Sedaris and need some comic relief, I highly recommend you read his descriptions of how his mom handled his behavior while he was growing up. He was odd, to say the least, licking doorknobs and counting steps. But her attitude was that he was quirky, not that he was deficient.
Plus, you *don't* know what the future holds. Maybe there is some perfect job for him out there. Maybe he *can* make it as an author. "Maybe" is enough to warrant all the support you can give him.
Walk that walk everyday. Balancing hope for my 23 year old with the reality that he will likely stay at the sheltered work center til he retires. Aspergers is a flighty condition, isn't it? Yesterday he had plans to attend a 4th of July picnic with a friend. He bailed thru a text at 4 a.m. stating he "would be too tired to attend". He is bright, articulate, and completely inept in the social world. Thank God he enjoys the computer. In his virtual world, he is a star, giving good advice and having social contacts with friends.