Articles
OPTIONS
FOR MILDLY DISABLED
YOUNG ADULTS
Hard to Find but Worth the Search!
Sometime
between the ages of eighteen and thirty, most young
people begin to fend for themselves. The exact times
and circumstances vary, but regardless of the variables,
parents almost always experience ambivalence during
these transitions. On one hand they feel a sense of
nostalgia and loss; on the other, they feel relief.
Their children are responsible for themselves now:
the mantle has been passed.
Unfortunately there are some children who can never
be
responsible for themselves, those with severe mental
illness or profound retardation or incapacitating
diseases or disabilities. Their parents know beyond
a doubt that their children will need lifelong custodial
care.
But between these two groups are children in the middle,
those who are not severely handicapped, but who are
intellectually disabled enough to require some degree
of lifelong support.
What about them? And what about their parents?
They face enormous challenges, both children and
parents.
Parents face their first challenge, almost immediately,
that being that they’re in the dark. They’re
told early that their child will be mentally handicapped,
but nobody tells them - because nobody knows - just
how serious or mild his handicaps will be. In turn,
this means parents have little idea what to expect
or when to expect it. They have no guidelines: standard
norms simply don’t apply.
The
second challenge comes later affecting children and
breaking parents hearts. These children are disabled
enough to be different, but smart enough to understand
that they’re different, and to know when they’re
being excluded or teased. In addition, their social
skills are usually poor: they want friends but don’t
know how to go about making them, so they’re
often isolated and lonely.
Finally, hard as it can be to let our children go,
it’s harder still when they can’t go,
which is often the case with these young people in
the middle. When others his age leave for college
or their own apartments after high school, the moderately
disabled child often stays home because his parents
aren’t sure where he can go or what he should
do.
But where does a family begin?
With
education, employment and housing, in whatever order
works.
The more education the better, and educational opportunities
exist at every level. A number of colleges offer degree
programs geared to students with serious learning
disabilities or very mild developmental delays, while
pre-college programs are for students who aspire to
college but need to improve their skills before applying.
And life skills programs focus entirely on skills
for independent living, such as bill paying, grocery
shopping and cooking. There are also schools which
offer dual tracks: pre-college and career training,
so a student can begin with classes in both and decide
later which route is right for him.
If a residential school is not an option, there are
classes in many local communities, and these are worth
exploring: the more skills anyone acquires, the more
independent he becomes and the better he inevitably
feels about himself. Plus classes are social. People
tend to make friends in classes, even shy people,
because the class itself provides common ground and
a built-in topic of conversation.
Employment
is next, though just finding and keeping a job usually
isn’t enough; there needs to be support and
camaraderie as well, and the best places to find these
are at agencies which specialize in work for people
with disabilities. These agencies not only have access
to jobs, they also provide job coaches who accompany
new employees to work and stay with them as long as
necessary. Job coaches not only give instruction,
they’re also ready with support and reassurance,
much needed by the fledgling employees.
Be
prepared, though: it takes time to find a good job,
and there might be a number of placements that don’t
work before a good fit is found. But consider the
benefits of a good job: self respect, an identity
separate from family, experiences to talk about at
the dinner table, new acquaintances and possible friends
- not to mention a paycheck. That job is worth the
search!
The
third issue, that of independent living away from
home, is particularly complicated because such housing
can be difficult to find or expensive, or both. In
addition, the emotional and separation concerns loom
large: with whom will an adult child live, will he
be safe, who will check on him?
Nonetheless,
independent living is worth serious
consideration for a number of reasons. The first is
obvious: parents will not live forever, and most
siblings will not want to spend twenty or thirty years
overseeing their sister or brother on a daily basis.
The
less obvious reasons are just as compelling. If homes
were small communities with streams of friends and
family coming and going, living at home indefinitely
might be a solid alternative. Except homes like this
are rare. We’re an independent bunch,and most
homes are more like islands than communities.
But a person with poor social skills needs exposure
to other people if his skills and comfort levels are
to improve, and he’s not going to find many
opportunities for social interaction or friendship
while sitting in the quiet home of his mother and
father.
There’s
a third concern: children regress when they come home,
no mater how old they are. This is why successful
adults often slip back into childhood roles the moment
they re-enter their parents’ homes. And while
temporary regression is fine, living at home can allow
too much of it, especially for the young disabled
adult who is already struggling to mature and separate.
As
an alternative, many parents make it possible for
their adult child to live alone in an apartment or
a small house. While this can work, it usually provides
no opportunities for social interactions, and it can
be terribly lonely.
Another
alternative is independent living with support. Individuals
have their own rooms or small apartments within a
larger house, which also contains a communal living
room, dining room and kitchen – much like an
old fashioned boarding house. Certain meals are shared,
as are some chores, and a qualified person lives on
the premises to provide structure and support as needed.
There
are public agencies which offer this type of housing,
although most have long waiting lists. There are also
a few private houses in existence, and more are appearing,
as frustrated families take matters into their own
hands. The point is this: housing can be the hardest
to find, but options do exist if families will persevere.
Always remember that
excellent living arrangements have been created by
parents who began with only an unmet need.
Education,
jobs and independent housing comprise the list of
“concrete” opportunities for these young
adults, but I want to add one emotional component.
We know it’s harmful to expect a child to achieve
things which are truly beyond his capabilities, but
it’s worse for a child if his parents have no
expectations for him at all. That attitude implies
that he’s
incapable of being part of the world - and what could
be sadder for a young person than to think his parents
believe he’s capable of nothing!
In
other words, young people with disabilities need to
know that their parents have dreams and expectations
for them, and they need to have their own dreams and
expectations as well - not only because they’re
able to enjoy so much of what life has to offer, but
also because they have so much to give. They can be
loving family members and loyal friends, and with
the right support they’re able to be excellent
employees. In short, they have a tremendous amount
to contribute.
Far
too much, in fact, to waste.
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