I'm An SPD Advocate... Are You?

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.

Looking 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?

So, enjoy family gatherings and holidays, include your child in all the activities and traditions he is comfortable with. Standing beside him, hand in hand. Chin up, with a smile on your face, and assertiveness in your heart.

I am the parent of a bright, loving, funny, special needs little boy.

I am his advocate.

Are you?

(Article First Published in SI Focus Magazine, Spring, 2004)

Copyright © 2004 Michelle Morris. Reprinted with permission

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About the Author:

Michelle Morris is the mother of six, and parent of a child with a Sensory Processing Disorder. She is whole heartedly dedicated to promoting awareness and advocacy for families with SPD children.  She has published over 30 articles supporting and educating parents about SPD.  Additionally, Michelle is the International Administrator of SPD Parent S.H.A.R.E. and owner of the Yahoo support group SID-DSI_AllAboutKids.

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