possible we did too good a job of helping our daughter, Sarah, partially emerge
from autism for her to qualify for disability payments? Getting supplemental
Social Security Income for Sarah wasn’t going to be easy, our Disabilities
Advocate, told us. Margaret was helping us fill out the daunting application
papers required. As I watched Margaret
type into the computer all of the doctors, therapists, treatments and special
ed schools, Sarah had attended, I remembered them all. Just as I recalled each of Sarah’s
many social, emotional and intellectual challenges and how we struggled to deal
with them. How could it be that with all of these interventions and modest
successes my daughter was a 22 year old woman who couldn’t get a job,
manage money or live independently without some outside support?
The application process took a couple of
hours, but it felt like an eternity of Chinese water torture. This was the paperwork I’d been delaying for
years, hoping against hope that a transformative miracle would happen and Sarah
would make enough progress to live independently without government assistance. This was my daughter’s own dream before it
became mine. “I want to do it
myself. I don’t want help.” These two sentences were Sarah’s childhood
Ever since Sarah started school, I have been
her PR rep, spinning the best version of her, hoping to get her into the best special ed schools
with the highest functioning students.
Henry, an adoring father and skilled attorney, successfully sued the
Board of Education for 14 consecutive years, so that Sarah received funding to
attend the best special ed schools in New York that would admit her. After so many years of emphasizing Sarah’s
strengths, it was painful for me to reverse course and highlight her weaknesses
to convince the bureaucrats that she needed and deserved government assistance.
The truth is that Sarah exceeded
most people’s expectations in a thousand ways.
Sarah graduated cum laude with an
Associate’s Degree from Landmark College. At Landmark, the entire student population has
disabilities, but most of them are not on the autistic spectrum. On the strength of my daughter’s transcript—which
doesn’t reflect all of the hours of extra tutoring or classes she could easily
have failed— she was accepted into Pace University’s OASIS Program, which
supports high functioning students on the autistic spectrum. Better still, our daughter was offered a
$17,000 merit scholarship. With her extraordinary effort, Sarah has made the
Dean’s List for the past two semesters, and is on track to graduate with a
liberal arts degree in May of ’14. If
she succeeds—which Henry and I both
fully expect—it will have taken her 5 years (including courses every summer)to
achieve what most neurotypical students finish in 4 years. Nonetheless, it will
be a stunning accomplishment. But perhaps too stunning for her to receive supplemental
the social security office doesn’t realize is that, despite her academic achievements,
Sarah is still challenged in thousands
of ways neurotypical kids are not. For example, my daughter’s understanding of
money and budgeting is rudimentary at best.
An eighth grade teacher once
reported seeing Sarah throw crumpled dollar bills into the trash, evidently thinking
they were garbage. A few years ago, she
put the decimal point in the wrong place on the computerized taxi screen and
paid the driver $100 instead of $10 on her credit card. Sarah never said a word about it and—surprise,
surprise--neither did the cab driver.
Life skills involving cleanliness
and grooming are still shaky for my daughter.
She showers, brushes her teeth and washes her hair every day. But what happens when she runs out of shampoo
or toothpaste? Nothing. She doesn’t tell me or go buy more. She simply
stops using that item. Before Sarah moved back home for her last year of
college, she was more than erratic about her laundry. Even if her clothes were dirty or smelled,
she kept on wearing them. Now at home,
where she does her laundry every week, she still confuses clothing that belongs
in the hamper with clean clothes that belong in her drawers.
Sarah is still making progress, but
I will never live long enough to teach her everything she needs to know. No
matter how hard I rack my brains, I can’t anticipate all the skills and
knowledge she will need for a lifetime.
I taught her how to refill the many prescriptions that keep her mind
more balanced. And she knows to take her birth control pills on the correct
days, but there are still glitches that no one could think of in advance. For instance, Sarah tried to fill her Abilify
prescription at the CVS on Fulton Street, and the pharmacist gave her blister-packed
samples because CVS was out of Abilify. Unfortunately, the blister packs were impossible
for Sarah (and later me) to open. Worse
still, Sarah didn’t think of asking for help; it just didn’t occur to her. Luckily, I discovered the samples in her bag while
looking for something else. Will the people at Social Security understand the
significance of that?
What about when we tell them
Sarah’s experience last year during super storm Sandy? Our daughter made no effort to contact us,
even though she was alone in her dorm at Pace University without electricity or
water. Although there was no land line phone
service, Sarah was able to get meals and charge her cell phone and laptop in
one of the main buildings. Why she
didn’t ask security to help her contact her parents to tell us she was safe, I’ll
never know. Instead she walked up and down eleven flights of pitch black stairs,
using her cell phone as a light. It was after Sandy that I admitted to myself
that Sarah would need supplemental social security and outside services. We won’t always be there to come to her
Our interview with Social Security was
at 11AM on Friday, September 13th. We needed to bring Sarah on a day
she didn’t have class, and Yom Kippur meant it would be slow at Henry’s office.
Yes, I know Friday the 13th is unlucky, but going there was already
rock bottom for me, so how much worse could it get?
We arrived ten
minutes early and sat down in pink plastic chairs. The armed guard who helped us check in tried
to warn us: “We have a new system now and the people here are still learning….
We’re moving in another week…. Friday is a bad day because we’re short
budget cuts and government gridlock that led to sequestration were having a
direct impact on the Elisofon family. Fridays
are furlough days, so there was only one interviewer instead of the usual six. Further, while all of the employees went out
to lunch, we sat in our plastic chairs and starved. Food and drinks weren’t allowed. For 45
minutes we sat in the waiting room listening to a tone deaf man singing. When
he got called for his interview, an elderly couple sat down directly behind us,
and I heard the man chomp loudly on chewing gum. Not only was he chomping, but also smacking
his lips. Chomp, smack, chomp. No wonder there were armed guards and bullet
proof plexiglass separating us from the clerks and interviewers.
day dragged on Margaret, our paid advocate, wanted to reschedule. She tried calling a supervisor, but no one
answered the phone. Finally, I found myself pacing in front of the
plexiglass and refusing to sit down until we were taken. Margaret said she’d “never seen anything
like this before.”
at 1:20PM a sheepish young man ushered us beyond the plastic barrier. He went over our paper work, asking questions
about each doctor and therapist. He also
questioned Sarah about her finances and if she understood why she had come to
Social Security. We had prepared her
for this by cautioning Sarah not to argue when we cited her disabilities, but
to provide honest answers to the questions about the challenges in her life.
11AM appointment with Social Security ended at 3:15PM, 15 minutes after the Social
Security office was supposed to close.
On our way out, we saw that the waiting room was still full. The man
chomping his gum asked hopefully, “Do you think they’ll take us today?”
I made a beeline for the elevator.
warned us that we would have to wait a week before hearing from Social Security. She thinks we have a fighting chance. But I’m not so sure.
Labels: autism, Board of Education, college, familly isues, government, learning disabilities, life skills, sequestration, special education, special needs, supplemental social security