As the autism epidemic climbs to an all-time high
of one out of every 88 individuals, a new breed of
parent will emerge as the years fly by. The next
decade will become known as the age of the parent
caregiver. Presently, we are just on the tip of the
iceberg. Those of us whose children were born
towards the beginning of the epidemic, in the late
80s early 90s, are already there. Over the last
several years, the promise of new intervention
strategies, both therapeutic and biomedical, held
the hope that many children would conquer this
previously thought lifelong condition. And
thankfully, many children did benefit from these
strategies. However, there is a big difference
between improvement and cure. And the result is that
most children with autism will need some sort of
support system their entire lives. Some will need a
great deal—possibly 24-hour supervision, while
others may need just some assistance with the
dynamics of living independently. Being that autism
is a spectrum disorder, the great majority will
require something that lies somewhere on that
continuum between total support and minimal help.
So what does this mean? Well, the obvious
is that, as a parent, we will be involved in some
form of caregiving our entire life. And also
evident, but harder to accept, our child will need
help in the years beyond our lifespan. These are
separate but related issues. As a SNACCER and as a
person who is professionally involved with other
SNACCERS, I would like to offer some suggestions for
coping with the stresses that both of these
situations bring.
So let’s begin with issue
one: Caregiving for an adult with autism or other
special need. Having been a speech pathologist and
owner of a therapy center for individuals with all
types of conditions for over thirty years, I have
been part of the process that trains and teaches
children to communicate and take care of their own
needs. I have had the pleasure of working not only
with the children, but their families. I suppose
that the implication of bringing your child to a
therapy center two to three days a week for a long
period of time is that eventually this person will
learn what they need to know to become a fully
independent adult. Unfortunately, that is often not
the case. More frequently, the situation is that we
can teach the individual to communicate in some
fashion or form, but communication is not
necessarily synonymous with conversational language.
Again, some will acquire that ability, but many will
not. They may learn to say or communicate what they
want or need in a rudimentary way, but not be able
to speak in long sentence-style language.
In terms of life skills, it’s similar. We often can
train the children to learn certain skills such as
brushing their teeth, dressing, showering, and even
some basic housekeeping tasks. Others will exceed
this expectation in leaps and bounds. We do have a
small percentage of individuals that will learn to
read and write to the point of being able to go on
to job training after high school; some even attend
college. But often, even with the most abled, social
skill problems stand in their way of really being
able to acquire and maintain a position in the real
world.
You may then be asking, “What is the
point of all this therapy and training?” Well, here
is the point: the more skills a person acquires, the
less support they will need as adults. The operative
word here is less. Less support, not no support.
And in this situation, less is better.
So
as parents, we must keep our focus on that premise.
We should not tackle our child’s problems with the
expectation that we can fix it or even improve it to
the point that one day, this child will grow up,
move out of the house just like our other children,
go to college, get married and have kids. I feel
that at a very early age, we need to be realistic
and plan for the future. We need to accept that
there is a good chance we will be in the position,
as a middle-aged person, where we will still be
taking care of our child in some way. I think that
the more we prepare for this emotionally,
financially, and physically, the better off we will
be.
I can’t tell you how many families that
I work with who are absolutely blindsided by this
realization when their child turns 18 or 21. It does
happen more frequently with parents who have a
higher functioning child. Usually, those of us with
more involved children reach the point of acceptance
a little earlier down the line.
The second
issue is harder. Our children’s life after we are
gone. In conversations with parents who are quite
intelligent, I hear the most irrational comments:
“I’m never going to die.” Or “I’m putting it in
God’s hands.” And the best one of all: “The
government will provide.” Please, please, please,
don’t put your child’s future in the hope that you
will never die, miracles, or the government. Surely,
if you are a person of faith, you believe that God
helps those that help themselves. Several years ago,
I joined up with another father and tried to
organize families to work towards the creation of a
residential community for our children.
Unfortunately, my timing was too early. Now, I have
rekindled that passion. I think with so many kids on
the autism spectrum growing up, there needs to be an
international movement. Yes, I said international
movement for families who have children on the
spectrum, to unite and start discussing the future.
Let’s please get a buzz going. A big buzz. I
understand it’s difficult to discuss a topic where
there are no answers. But let’s start creating them.
Wouldn’t it be wonderful if you knew that your child
would be safe and secure no matter what happened to
you?
I know these are two difficult
subjects to discuss. But the answer is to be
realistic and to start preparing early. Start with
small steps. Acquire life insurance. Establish a
special needs trust so that if something happens to
you, the life insurance would go into the trust.
And lastly, document everything you can about
your child’s life. I have created some templates
called LifeCare Book. These templates, once filled
out, will explain everything you need to know about
managing your child’s life. I send these out to
anyone who asks me for them free of charge. Just
leave your email address on my blog listed below. In
addition, I recommend that you write a narrative all
about your child. It should be a story starting with
what time he or she wakes up and exactly what
happens after that. Blow-by-blow, all the way until
they fall asleep. You should pretend that you are
explaining to someone what your child does every
single day. In the story, you will want to include
all the special things that you do for your child,
all their reactions, every quirk or response to
stimuli that you can think of. You can even include
photos.
Start talking to your fellow
parents of special needs children; or if you are a
SNACCER, to other SNACCERS. There is comfort in
knowing there are others in your position. Seek out
listservs and blogs that discuss these issues. I
guarantee that once you accept the situation and
start preparing for the future, you will gain a
better sense of control. And that feels good.
Valerie Herskowitz, MA CCC-SLP was the
recipient of the Stevie Lifetime Achievement Award
for her work with autistic and special needs
children. She is also the mother of Blake, a
21-year-old man with autism. She is the author of
two books dealing with autism.Contact information:
snaccers.blogspot.com
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