A Compassionate Voice for the Parents of Children with Hidden Disabilities
Melanie Boudreau
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Take This Child!

10/12/2012

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The church has bought into a lie. It’s a distinctly Western lie, one that’s intricately intwined into our benefits based Christian faith. We protest loudly when we suffer the harsh realities of life, realities like our own mortality, or the mortality of those we love, or flesh based laws of inheritance, or we become victims of an unjust and corrupt system. Our pleas before our living God can become like fetishes we rub for favor, with no real submission to the God we claim to serve.

What is our response when our child is born with differences that reflect poorly on us, our genetics, or our parenting? It’s one thing to adopt a child with brain chemistry or developmental problems, but it is quite another to physically birth one, or even several. What is our response beyond the horrific dark abyss of grief when we lose a child? What did we actually mean when we surrendered our child to God in the first place? What we meant was never surrender, but actually protection unto perfection. Anything less is perceived as a breach of promise, and a crisis of faith ensues.  

On a flight this week, I sat next to a Chinese college student with Christian heritage. She marveled that her grandfather was a believer throughout the Revolution, wondering why he did not lose his faith. I suspect that during that season was when a truer faith was born, a mature faith with abandoned need to control, a faith that lacked the demand for an explanation. The result of fire in our lives is solely dependent upon our own constitution, not the source of that fire as being from heaven or hell.  The same fire that consumes stubble, purifies gold. 

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" I Don't Get No Respect!"

10/7/2012

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I respect the fortitude of a widowed 90 year old man who, as a result of his moral convictions, choses sexual inactivity. However, if I met a young man in his twenties who managed to keep himself pure based entirely on his decency, I would be far more impressed.  Why? The young man's self control is more of a challenge. 

There are those with brain chemistry challenges who manage to hold their lives together. Are they getting the extra respect that should be afforded them? If someone were to say to you, "I'm bipolar" or "I suffer from chronic depression" and their lives are not in chaos, would you only hear their diagnosis, or would you actually be impressed by the strength of their character?  

Our children with differences may actually be trying multiple times harder than their peers or siblings, only to be subjected to repetitive corrections for not quite reaching the set level of expectation. They watch others who may expend very little effort receive accolades. They cry FOUL with attitude in the midst of their demoralization. Like the Na'vi line from Avatar, we must "see" our children. Respect the effort and progress, not just the standard when doling out praise. 
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The Value of a Label

10/2/2012

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Brain chemistry challenges are hidden disabilities. With a label, your child will be judged more fairly by your family, and by your child's overseers. Those labels give you search terms to find a community of prevailing parents and a wealth of enlightening information to aid you. Even more importantly, however, labels open the door to accommodations and services for your child. 

My daughter is brilliant. Those three hours of homework I spent every night during her elementary years working through screaming rage attacks to get her to jump through the same hoops as her peers was completely unnecessary and relationship damaging. She laughed in Kindergarten relating how her classmates were learning "A: ahh" when she was speed reading Shel Silverstein comprehending the sophisticated humor of placing a brassiere on a camel.  But Kindergarten was hard... it required complex tasks like standing in line and interacting with others. We actually had this conversation. 

I became empowered when I figured out I had the right to mold expectations and requirements for my daughter in her school setting through 504 behavioral plans and IEPs. Without the labeling of diagnosis, your hands are tied.

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Head in the Sand

10/1/2012

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With your head in the sand, you are unable to open your mouth and speak life to your child. 

My son attended Sunday School at our mega church and made a delightful new friend. The boy was homeschooled, disturbing no one with his obvious tics. I took this child to Chuckie Cheese's and observed his struggle to transition between tasks, distractibility, hyperactivity, and obsessiveness. I tested the waters by casually mentioning that his playmate, my son, had Tourette's Syndrome and that's why he had certain unusual (aka identical) behaviors; think nothing of it. No lights went on, so I decided it just might be time to have a careful chat with his mom. I'm no doctor, and I don't diagnose, but certain symptoms are profoundly evident to the experienced eye. Response? Very little...

The message I couldn't speak to her son: "I see the shame on your face when you turn away to try to hide your tics. You need to understand that you're not crazy. I know you are not doing those things because you want to. There is a spot in your brain that sends errant signals. No big deal. It's just chemistry. That's all it is. It's why you struggle to transition from one task to another, why you perseverate, why you lose the battle to sit still even though you try so hard. If it bothers you so much that we need to explore treatments, just let me know. In the meantime, I want you to know that I understand how hard it is for you, and I am giving you full credit for efforts as well as for your successes. I see your heart, even though in other settings you may endure harsh corrections, know that I am on your side."
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    About Melanie

    Two of our three children have Tourette's Syndrome as well as a few other co-morbidities, inherited neuropsychiatric disorders. I'm still happily married, love life and want to share encouragement bringing hope, humor and insight into the process of raising children who are different. 

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