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Friday, May 11, 2012

Doing My Job

A few years ago, I was speaking to a stranger on the phone during an intake interview regarding services from her agency for our older son. I was a mess. This woman was trying to get an idea of our son, our family and our struggles, and I was a crying mess on the phone with every word I spoke.

Our family was not in a good place. Unknown to us at the time, our son suffered from many gastric issues, including Celiac Disease. He was highly sensitive to even minute traces of gluten in his environment. For a special needs child who compulsively licked surfaces and ate non-food items, this was a challenge when transitioning him from home into a school environment. We sent him to a self-contained kindergarten, and he came home sick nearly every day.

I pressed for better care.
He was still sick.
I pushed for higher standards.
School pushed back.
I consulted on the district level.
The district stalled.
I advocated our case to the state.
And, I felt that I was heard.

But, that certainly wasn't the end of the struggle. In order to clear that particular hurdle, we had to hire a lawyer. It took time.

"I feel like I'm fighting with everybody, I cried to this woman on the phone during that intake.

"You wouldn't be doing your job it you weren't," she said to me.

I think of that time in our lives often, particularly every Spring as we enter into negotiations with the district for next year's placements and services for our sons. With the diagnosis of our younger son a year ago, now we have two children with special services. We now have twice the amount of considerations and twice the battles.

At any given time, there is always something going wrong.

Right now, we have a bunch of things that are going wrong. A child is in crisis or there is a kink in this plan or that or the district isn't happy with us or we with them. I feel as though everywhere I go, I'm confronted with a battle:

By e-mail.
By text.
By phone.


I feel like I'm always fighting.

Many years down the road from the day I first made that statement to a kind woman on the other end of the telephone, I've learned that this is just part of life with special needs. Problems happen. Sometimes they resolve easily. Sometimes we have to stand our ground until the storm passes.

Nobody said it was fun.

Just this past week, while I was riding out one or two storms, our older son came over to me and kissed my cheek. He kissed it a second time and then a third. And then, so casually before he walked away, he said, "I love you."

I stood in shock.

The first and last time I heard those words from him were five years ago. I didn't know when or if I would ever hear them again. And, while I knew that he loved me and didn't need to hear the spoken words, hearing them was, well, wonderful.

He made a spontaneous expression of how he was feeling. I heard his voice, and I was reminded why it was important for me to continue to use mine.

Happy Mother's Day to my fellow moms out there! May your battles bring you many rewards!

6 comments:

  1. Happy Mother's Day to my warrior friend and super mom extraordinaire. ♥ to all and I hope you get a good dose of pampering on Sunday.

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  2. I love knowing that you've already received about the best gift there is. Happy Mother's Day to you!

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  3. I love reading about this - again and again. Happy Mother's Day!

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  4. How wonderful for you! What a great thing to happen spontaneously!!! And, some battles get easier, some come again and again, and some get harder. But, you just experienced why we fight for our kids - they are so worth it and they need it. Happy Mother's Day!

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  5. oh how wonderful to hear your son say those sweet words again--i remember all of those battles--it really does wear on you--blessings to you

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  6. My heart swells to bursting with being able to hear him say those words to you. Such magic. Thank you for sharing this and reminding us all of how much is conveyed in saing it.

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