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Saturday, August 20, 2011

GBE2 Challenge 13: Trust

My blogging group ( which I've neglected a bit lately, sorry guys) has issued a challenge to write about trust.

When I saw the topic, I immediately internalized it and thought about what being a parent to special needs has done to me regarding trust. And, notwithstanding the very most important people in my life, I can safely say one thing:

The day my first child was diagnosed with special needs was the day that I stopped trusting people.

And, with each additional diagnosis that has been given to our kids, that feeling is solidified a bit more.

Oh, don't get me wrong. I'm a LOVELY person. My smile is, in fact, genuine. It's just that, something happens when that first diagnosis is given. The emotions kick in: sadness, disbelief, anger, outrage--you name it---and suddenly nothing is what it seemed. I felt immediately on the defensive, and the fighting gloves were on.

I don't think they were born from anger but from an intense love that compelled me to stand up and stand strong.

One of the first diagnoses handed down in this household was autism. It was tough to swallow. And, what made it trickier is that medical science does not fully understand it.

There I sat, a new mom, absolutely crushed with the fatigue of caring for this baby who had always been in crisis, and I was told that my first-born child had a life-long condition that had no known cause, no proven treatment and no concrete path forward.

I felt like a baby bird being tossed out of the nest, only, somehow, my wings had been clipped and I had to figure out a different way to fly.

My husband and I jumped into action. We fielded the overwhelming amount of information available in books and on the Internet from parents of autism, and each time we questioned one of our son's doctors about what we'd read, I couldn't help but think that their answers were coming out of thin air. It didn't take long for me to decide: THEY DON'T KNOW. THEY CAN'T TELL ME. Very early on, I lost trust in the medical community.

Our older son, bless his heart, is a tricky fellow requiring a good amount of behavioral intervention and education. When he was newly diagnosed, I opened the door to my home to a gaggle of kind-hearted therapists who came in and out throughout the day in an effort help him. For the most part, we consider ourselves extremely fortunate for the people who cared for him during this time. Yet, I watched them like a hawk. I couldn't help myself.

This was my son. This was his future. I'm sure they had glorious credentials but that really didn't mean squat to me. I, with no educational background to speak of, wanted everything to be run by me, and I wanted to see every session. Very early on, I could not trust the therapists to work without me.

At the age of five, he transitioned into the school-age system. We unfortunately picked an ill-suited classroom for him with staff that did not understand his medical needs. The program did not trust us. We did not trust them. We turned to the school district that was new to us, and they didn't trust our understanding of our son. In the end, it was the trust we placed in our newly-hired attorney that got our son out of that placement...

...and to a placement which, a little more than a year later consented to five adults pinning him to the ground for 45 minutes because he had a gastric upset and no language to explain his needs. I guess they didn't trust that he wouldn't somehow become angry. Very early on, I did not trust the school system nor the classrooms for the care of our child.

I know a lot of parents to special needs that are bitter. I'm not to that point...yet. I hope I never will be. Because, while being called to parent in a different life than I imagined has resulted in a lost trust for those around me, I have also gained a new trust. In the end I trust myself.

I trust that if I don't know what action to take, I can ask enough questions to figure it out. I trust that my husband and I can advocate for these kids with no problem. I trust that we have it in us...even with ten years of sleep deprivation...to continue to put one foot in front of the other, moving our family forward.

What a gift that is.






4 comments:

  1. As I have said 100 times or thereabouts, you are a very special and devoted Mom and your rewards may be few right now, but they await you. Your children are very blessed and so are you and your husband. Blessed with such amazing trusts from God.
    (((hugs)))

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  2. ♥. That's all, but there's lots and lots of it.

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  3. I can absolutely understand where you are coming from, having a special needs child--remember getting that diagnosis--and the feeling it was me and mine against the rest of them. Oh such an awesome post!! Cheers, Jenn

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  4. This topic must have knocked your socks off...I can only imagine all the trust you have tried to put in God, institutions and life. I am very proud of you.

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