Tuesday, November 10, 2015

On Aiming Low

"Aim low," advised MOM-NOS. Years ago this wise autism mom described the perils of having one's child described as "high functioning" and the risks of being shortchanged on the supports and services that can make his or her so-called high-functioning possible.

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
Yes, that was the language. Mental retardation.

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.


audball said...

Wow, that is a lot to take in...but this SSI benefit is only if M needs it in the future, right? I agree; reading the literature must be incredibly sobering - especially when you consider how capable M is. And no, sorry...there is absolutely no excuse for why the "R-word" is on that application. It's demeaning for the client and their families that fill out the paperwork. I'm glad you checked "other". I certainly would have too! And kudos for calling the office and complaining. Perhaps if more people did so, that word would be removed permanently from the paperwork.

Like you, I've been caught between this strange "limbo" of how to define my girl. We are going through the process of looking at alternative high schools. While our neighborhood high school is highly rated (for our state, at least), it's huge - 1670 students for all 4 years and the numbers will be swelling with the influx of people coming to our city. The district is re-examining school boundaries, but at least in the short term, the population of the high school is expected to rise.

So we've been looking at private schools, and once again, we are confronted with what our daughter "isn't", instead of what she "is". She's extremely hard-working, capable, and creative. But if I fill out the forms exactly as I should, she looks so...fragile...on paper. She needs support (which she would get through her IEP at our [very overburdened] SpEd department at our public high school), which private schools can't always support. Still, they have the smaller class size that would be very beneficial. I found a fantastic high school that caters to kids with learning disabilities and gives a standard diploma (unmodified; unlike some of our high schools here), and has a cross-registration with one of the top private high schools in the state (generally to accommodate what they call "twice exceptional" students). However, when I told E. about the school, she said very quietly, "Mom, I don't think I need to go to a high school like that anymore. I find some of my social classes...tedious and boring. I can manage a regular high school."

And what I wanted to say was "Yes, but you still *need* those classes. And with high school, you may need even more support because the work load will be increased, the social situations will be harder to navigate...". But I couldn't make myself say it. She feels so confident and well supported at her middle school. My husband says we need to respect her wishes, and I know we do. I just have a hard time feeling as confident as she does - maybe because, like MOM-NOS, I too have been aiming low, controlling my expectations.

You are so amazing and both you and your husband are doing right by your girl. You're looking out for her and making sure she has a soft place to "land", if that rocket ever does need to touch down (if only for a bit!). BTW, I found a list of good colleges that support autistic, learning-challenged kiddos from this school's application. They are primarily on the west coast (because I'm here in OR), but if you want them, just let me know!

Anonymous said...

That's odd. In my packet (in a different state than you) it says do not apply for SSI until your child's 18th birthday. SS will not accept the application prior to that date?? Huh. I thought it was federal and it would be the same everywhere.

Alex Neil said...

Thanks for this information about how challenging autism can be on a daily basis. I am writing a paper for one of my social work classes about parenting challenges, and one of my classmates mentioned that he was going to study autism. I had always wondered about those particular circumstances, so I thought I would read up on it just a little bit. I feel like your idea that it's "just" hard, no explanation really could describe a lot of different circumstances; it's really inspiring that you just deal with it as best you can from day to day.

Autism's Edges said...

Hi Anonymous, Sorry for the long lag in posting comments and responding. There's at lot going on and I'm torn between two coasts right now! And yes, applying for SSI should be the same everywhere in the US, but it seems as though there are variations on how some things are handled state-by-state. Benefits (the part the state pays) vary by state. And it seems like claims handling may also vary. For some reason I was told to apply before she turned 18. But I think the advice that you received was more accurate because there were complexities about her application because she became a legal adult in the middle of the process.

And hi Alex, I hope I did not leave the impression that autism is all challenges and no fun. It's a pretty amazing journey, though the shape of our culture's response to disability make for a great many challenges.

And dear friend Audball, It really is a limbo. You inspired me to write a long post about it, just now. It is so hard to not fall into the labels and categories, to leave open spaces for possibility rather than prognoses of doom. But I think that's the real work -- to stay flexible in the face of rigid structures/systems and damaging stereotypes and bigotry -- that's the way we can work to help our girls thrive. Thanks again for writing such a beautiful and thoughtful comment.

Thanks for visiting!