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I Am a SNACCER: Special Needs Adult Child Caregiver
By Valerie Herskowitz, MA CCC-SLP
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.