"Stop running, Michael!" I
ineffectively command for the third time at a family holiday gathering.
Michael is excited, over stimulated, and reckless. I am stressed,
exhausted, and ready to go home. We've been here for thirty
minutes. We have looked forward to this moment (twenty times a
day) for the last two weeks. He is delighted to see his cousins,
and pleased to be with family.
"Arrggh! Somebody get him
off of me!" shouts his favorite cousin.
"No! Michael, don't touch
that, it's glass."
"Really, if you would
just be a little firmer with him, he would behave."
"He should sit in the
kitchen, you know, he makes such a mess . . . "
"Of course, he'll do fine
in a public school. He'll adapt. He'll have to."
"Honestly, you over
protect him. He needs challenges!"
"Now, look, he's hiding
and crying under the table. What's wrong with him?"
Sound familiar?
The more we learn about Sensory Integration Dysfunction, the more we
realize what triggers our child. We are seeing circumstances, and
situations he is unable to cope with. Can't... NOT won't. As he
goes through the process of therapy we move along with him,
identifying, comprehending, assisting, and yes, challenging. The right
challenges with the capability of success.
Webster's Dictionary defines the word advocate as "a person who speaks
or writes in support of another. To champion, support, encourage,
advance, promote, recommend, approve, and endorse."
We are our children's only full time advocate. Our kids need us to
learn as much about their disorders as we can. They need us to
understand what they are going through, every day. They need us to feel
how frightening and chaotic their world can be. Above all else, they
need us to be their advocates.
To say,
"No more" when it
needs to be said.
To say,
"You can do it, I know you
can!" when we know they can.
To say,
"I know what he needs" because
we really do.
If your extended family is coming along this journey with you, learning
as you go, incorporating new strategies, realizing limitations,
wonderful! This is what we all want. If this is not how things are
going with the relatives, then it's up to you, as your child's
advocate, to help them learn, if you can. If that is truly not
possible, it is also your responsibility to set limits for your child,
and the family.
As we attend family gatherings, we must put our child first. We decide
when we come and when we go. If our boy's behavior is escalating, or
someone is overbearing toward our child, we take him for a quiet walk.
We sit by his side during stressful meals. We intervene in a calm way
when the other children don't realize he is just very happy to see
them. When we know he's had enough, we leave.
Granted, this doesn't always make us the most popular members of our
family, or friends. But our first priority must be to the child who
cannot speak for himself. Who usually doesn't even know he is
committing social faux pas.
We have learned to say "
thank you,
but not this time," to events we know would be disasters,
understanding that when we do not consider our boy's needs, we are
responsible for exposing him to immeasurable terror, confusion, anger,
and discouragement.
Some holidays now, we spend quietly. There is a lot to be said for
"peace on earth". Especially when you find it in your own little house.
There are other holidays we visit with relatives, and friends. Usually
low key, with a limited number of people. This is enough of an ordeal
for our boy, right now.
What challenges are appropriate are decisions you, the therapists, and
the doctor make together, according to your own child's therapeutic
plan, and progress. This principle of advocacy extends to
daycare, babysitters, friends, schools, and doctors. Be precise about
what your child needs. Speak up. Check up. Smile and nod, then
insist.
Aggressive behavior is too much. No one wants to help a belligerent
person. Passive behavior is too little. Who will listen if we
won't say?
Being
assertive is stating positively with confidence in a persistent way.
The advocate wields the weapon called assertiveness.
I am the parent of a bright, loving, funny, special needs little boy,
and I AM his advocate.
Are you?
© 2004 Michelle Morris