Susan's Blog

Sunday, March 16, 2008

Help Wanted

I submitted this to all the usual suspects and had no takers. So now it goes to the blog, and maybe my local paper, where it will probably be better appreciated. Thanks to Jonathan Kaufman for all of the help on this one. He is an amazing resource for disability strategizing.

Help Wanted

As I got ready to reserve my Cape Cod summer rental — as I do every
March — I thought about last August, when Nat, my 17 year old
autistic son erupted into a difficult temper tantrum on the beach. I
remember watching him, nearly six feet tall, stomping and jumping
and screaming, while all the families around us watched in shock,
confusion, horror, and fear. Nat’s father and I helped Nat calm
down, having been dealing with this kind of thing for years, and I
even had the energy to force a smile and tell everyone witnessing
this that we had it all under control. The moment passed, but of
course, it remains in my heart, another stone of worry, another
question mark about the world’s ability to deal with Nat.

It’s a tough world out there, or so the saying goes. And lately,
with transition to adulthood hanging pendulously over our heads,
those words are the Greek chorus in my own family drama.

It seems like only yesterday that I was fighting with our school
system, trying to get him a place in our neighborhood school, or any
school within our town, but being told, “No, there’s nothing for him
here.” Only seven years ago I fought with our synagogue to get him a
Jewish education, too. And how many different extracurricular
activities were not quite “a good fit,” and thereby closed to Nat?

We have always been painfully aware of that real world out there,
that seemed to lay in wait for Nat like some dark, fearsome
creature, and so we fought for him on all fronts. We worked hard to
get Nat everything he needed, from education in a private school for
autistic children, to afterschool tutoring in academic and play
skills, to one-on-one aides that would allow him to enjoy school
vacation week outings or summer camp, or a week at Cape Cod. We
sweated for a year to prepare him for his bar mitzvah, but he did
it, tallis, Torah, and all.

And this is all while living in the Boston area, surrounded by
qualified specialists, in an era where an appropriate education for
all children is the law, in a country known for its emphasis on

I have learned that once he turns 22, even with a scrupulously
comprehensive education, it is like falling off the edge of the
world for kids like Nat. There are no mandates in the corporate
world, other than that employers may not discriminate based on
disability. As difficult as Nat’s childhood and education have been,
there are even fewer resources for adults. Competition for funding
and services like job coaches is so harsh that chances of getting a
job are very, very remote, if not impossible.

And then, there’s the workplace itself. According to the Equal
Employment Opportunity Commission, there are some 2.5 million
intellectually and developmentally delayed people in the United
States, and only about 31% of the country’s intellectually impaired
people work at all. The biggest cause of
this? Bias. Prejudice. Unwillingness to accommodate, or even to give
someone like Nat a try.

Why? Why is a great country like this, with laws like the IDEA,
willing to accept such a low standard for so many of its disabled
adults, after investing so much in their education? When will the
workforce leaders begin to realize the untapped potential among the
disabled – sometimes with very minor accommodations? Accommodation
need not only be about building ramps and elevator lifts. Sometimes
accommodation is about understanding that some people behave
erratically, and how best to manage that. Some people may have to
flap their hands or rock or talk to themselves in order to
comfortably perform a task. Sometimes support on the job is about
dealing with a coworker who cannot make small talk around the water
cooler – but give him his work routine, and he will perform it

I can see that the next frontier is going to be all about getting
Nat a job; cutting a swath through all of the reluctance and
ignorance that’s out there. There will probably be a lot of trial
and error with his employers, just like there was with Nat’s early
school programs. In the end, hopefully we will learn as much from
our victories as from our mistakes.

I used to think that life was hard, just because Nat had a tough
time on playdates. I used to feel that our Cape Cod vacations were
difficult, because of how people would stare at Nat chatting with
himself up and down the water’s edge. I smile wistfully at my
younger, naïve self, as I gird myself to slay this latest dragon.
Back then, I didn’t know what tough was. I’m afraid that compared to
employment, childhood and education were a day at the beach.


Susan, this was so fabulous — I posted a link to it on my blog. Hope that was OK (if not, let me know and I’ll take it down straightaway.)

Julie Fay

— added by Julie on Sunday, March 16, 2008 at 9:16 am

Julie, I’m honored! Thank you.

— added by Susan Senator on Sunday, March 16, 2008 at 9:23 am

Well said. It’s hard for everyone as we get older, harder still for our boys.bu

— added by Someone Said on Sunday, March 16, 2008 at 11:25 am

Great post. In the old days of really extended families, nepotism would have been the way to go. Nowadays, I’m guess that social networking might be able to play the same role. If he can’t be treated fairly, maybe you can work towards getting him treated unfairly in the direction that works for him.

What kind of stuff do you think Nat might like to do?

— added by VAB on Sunday, March 16, 2008 at 11:52 am

Susan. this is the big one, isn’t it? I think family businesses will likely still be the best option for many. Organizations who provide supported employment are terrific (I hear that Walgreen’s is a big one and there are many, many smaller ones too) but the paranoid parent in me sees unacceptable risk that market competion may trump the altruistic goal for some of these organization’s clients and expose the employees to earth shattering change. I am looking at farms as a possible solution for my son. It’s not for everyone but it may be for us because it could combine a group home and employment under one roof and my son loves the outdoors, nature, and animals. I’m not affiliated with them but a good group is You can learn a lot about farms for people with autism on their website.

— added by Dadvocate on Sunday, March 16, 2008 at 1:52 pm

i work at a community school for students with autism and we have a program with bittersweet farms to bring our students for art. the farm is beautiful. there is also a place out here called lott industries ( that is a supported work place. we’ve also been partnering with a local holiday inn to help our kids get hotel experience and are also working with the humane society as well as goodwill industries, all three are volunteer basis at the moment. maybe these are some places you can look for ideas?

— added by cs on Sunday, March 16, 2008 at 8:39 pm