Q and A: Behavior Problems
Question 3. I am at wits end. My 16 year old son is exhibiting some
behaviors that we are not sure how to handle. He was born with hydrocephalus and
as a result has cerebral palsy (wheelchair dependent), is probably totally
blind, seizure disorder, development delays, speech impairment and is medically
fragile. For the past 3 years I have home-schooled him with the blessings and
support services from our school system. Since he reached puberty we have been
having some different problems with him. He cannot talk but communicates
somewhat effectively with signs that we have taught him. The signs he uses
include; want, toy, stop, nite-nite, smell, listen, and yes. I feel that most
of his behavior problems stem from not being able to communicate everything he
wants to get across. His receptive language is much higher than his expressive.
He will hit himself and others when he cannot get his point across, and will
also cry, he knows what he wants but we don't. He will also try to hit people
who just come up to him to say hello (at church, family gatherings, etc.). I am
not sure how to correct him so that he will know that I want him to stop the bad
behavior, not the signing, etc. I know he also has some sensory problems, and
some of this may have something to do with that. He likes everything to be on
schedule, so he will know when things happen (because of his vision he does not
know the time of day any other way), if someone comes to our house that I did
not know was coming (I tell him when anybody is coming) and therefore could not
prepare him, he just gets all "bent out of shape" and hollers, and fusses the
whole time they are here. I sure would appreciate any suggestions on how to
handle these things. We are in the process of trying to get some advice and help
through our local mental health facility, but because of some "red tape" and a
misunderstanding about where we would meet (either in our home or their office)
we have not been able to get going with that. Thanks.
Response: When at your wits end, tie a knot and hang on. Adolescence can be very
tough with any child. Some people think of this period as the “terrible twos
grown up quite a bit.” A child like yours with so many special needs is
obviously no exception. The last line of your letter sticks with me because I get
the idea that you want the mental health professionals to come to your home. While this is often very helpful, it sounds like your child is already home most
of the time and might benefit from doing things outside of the home. He needs to
become more flexible and come to understand as best he can that everything is
not so predictable. It is important not to give in to all of his outbursts. He
may be able to learn things out in the world that will help him through the rest
of his life.
Being the parent of a nonverbal child myself, I know first hand how frustrating
it can be when your child is upset and you can't figure out what he wants or how
to handle it. It can be extremely difficult to be in public. Generally as
communication improves, this type of situation lessens, so the main strategy
should be to continue as you have to develop a communication system. The
behavior is a symptom of your child's frustration. When he hits and pushes that
is a “sign” of his frustration, so in that sense he is communicating, and he
needs to know that you understand him. One idea is to develop a sign that is
more appropriate so that he can express this feeling. A speech therapist can work
with him on this, while an occupational therapist can work on the sensory issues
you mention.
Parents of other children with similar disabilities can be a great source of
support and advice for they face similar challenges. I would strongly recommend
that you consider reaching out and joining a parent group in your area. Such a
group might be located through United Cerebral Palsy,
www.ucpa.org . Since your child is blind, he
might also be eligible for more services because of that sensory disability. If
he has any loss of hearing, there is a nationwide network of programs that
provide family support in each state. Try
www.helenkeller.org You have come a long way, and I hope these brief
comments might be helpful on the next leg of your journey.
RN
