I've kept MOM-NOS's advice in mind over these years as we've tried to navigate a path for our girl that neither underestimates her potential nor overstates her functioning. Sometimes I fear we have aimed too high. Often I feel that she has had inadequate supports because we elected to keep her at a school that has high academic standards, but very minimal scaffolding for social communication issues.
So with the "aim low" advice echoing in my mind, and as our girl's 18th birthday approaches, I have found myself in the sometimes unsettling position of applying for Social Security disability for our girl one week and going on college admissions tours the next.
The transition planning materials I've been reading say it is imperative to apply for SSI before the child's 18th birthday. A good friend has nagged me, saying it would be irresponsible to not get our girl the aid that she needs now, and may need in the future. Our girl's school principal advised us to put in her application. And the final push came when I listened to a gentleman our age recount the nightmare of trying to get SSI for his autistic adult brother because, in his words, his parents had been too proud to ask for help. Our girl has no siblings to help her in the future, so it's up to us to get what she needs set up for her.
Dealing with the Social Security Administration has been a surprisingly good experience. The care and support of the people there has made me want to urge Congress to up their budget, expand their services, and ensure that a citation of excellence be awarded to the agent that handled our case.
And yet. And yet. The requirement of abject debility in order to secure the supports one needs to foster and realize potential remains the autism parent's conundrum.
At one point in the phone interview our SSA agent remarked that this case should be a presumptive determination in our girl's favor because our girl would be permanently disabled. She'll be entitled to these benefits for the rest of her life, he assured me.
I knew I was meant to feel happy, relieved and grateful, but you know that my heart sank.
If this were one of the 1950s Tom & Jerry cartoons our girl likes to watch, my heart would have fallen from my chest and crashed through the seven apartment floors below us and landed in the basement, next to the boiler, bruised, broken, in need of bandages.
Ouch. Permanently disabled. Entitled to a tiny (though admittedly helpful) $500-700 for the rest of her life. Restricted from having more that $2000 in assets. Limited to earning $1000 a dollars a month or less.
The next week the SSI paperwork arrived and I sat down to review it, required to certify, under penalty of perjury, that the contents were accurate. The management and reporting on her benefit was assigned to me because, according to the paperwork, she suffers from "mental retardation."
|Our girl's watercolor, 2009|
I winced. Apart from this not being accurate — we had never discussed our girl's IQ, which is pretty average as IQs go — mental retardation? Do we even say that anymore? Isn't there a national campaign to end the use of the R-word?
I phoned the Social Security agent to correct this point, and he was so apologetic. Yes, he said, no one uses that language anymore, but that's just one of the only boxes we can check. Some people, he said, call and yell at me about this, but it's really just the form.
We corrected the record for our girl by using the box for "Other, please specify" and noted that she needs assistance with her funds because autistic communication impairments make money management ill advised. I wanted to add "at this time" to leave wide open the door for her to manage her own affairs, but I didn't want to push it. A presumptive determination in her favor would be a great help for our girl.
As I searched for ways to reconcile the lows and the highs of this transition planning time, I came across this watercolor that our girl painted some years ago of a rocket against a field of blue, aimed at an amber sphere. At the risk of sinking into a banal metaphor, I'm no longer thinking of us as aiming low, as wise as MOM-NOS's advice has been. Now I imagine us shoring up the launch pad for our girl, making sure the ground is stable and firm, finding a way to set the stage for her launch, but allowing the destination and trajectory to be her own.