A Compassionate Voice for the Parents of Children with Hidden Disabilities
Melanie Boudreau
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"It's the School Calling Again!"

9/6/2015

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I think my daughter’s school had my cell phone number on speed dial! 

Somehow we maintain hope that putting our child with hidden disabilities in school equates to getting a break. In our exhaustion, we look forward to late August/early September while at the same time grieving the inequities and social rejections we anticipate await our child there. The illusion of a break doesn’t last long. I think my daughter’s school had my cell phone number on speed dial! 

One semester my daughter started a new science class, and I braced myself for the barrage of calls as she had never taken a class from this instructor previously. After a week of silence, I was convinced my daughter was hiding out in the bathroom! Finally, I dropped into the classroom after school to chat, and her teacher had plenty to say. My daughter was brilliant, engaged, and quite knowledgeable, a delight. “Of course, sometimes she...” I discovered this teacher’s son was also on the spectrum. She could see my daughter for her wonderful self, while handling beautifully her troubling behaviors.  

Of course, more often the calls increased in frequency like a speed train barreling towards a hairpin turn ahead on the tracks as the fall progressed. The illusion of a “break” vanished like vapor, as I found myself rescuing, advocating, trying to figure out “what really happened”, and holding my child accountable for both behaviors and expectations placed upon her. A helpful strategy during Autumn was to change my own expectations of what a break looked like. 

There is more than one way to take a break. When I’m preparing my yard to endure the prolonged Colorado winter, raking leaves and clearing raised beds, my muscles tire. I don’t sit to rest, rather, I switch jobs employing a different muscle group. Raking turns to sitting and weeding, or bagging. The variety allows me to continue progressing towards my goal, giving parts of my body a rest while using other parts, all the while continuing to work. 

Perhaps you had hoped starting the school year would provide some relief from the endless battles. In a way, it has, because you get to use a different skill set now than when your child was home all summer, interacting with siblings, and avoiding chores like the plague. Presently you are listening, negotiating, brainstorming for success, dreaming up clever ways to enforce accountability, and advocating. The weight of the imponderables is being spread across a greater audience, which lessons the likelihood of any given collaborator collapsing.

Recognizing the reality that your child is still challenged in this different environment and requires your near constant “re-thinking” of strategies to address those challenges can shift the blunt force of the brutal calls you receive from school into a forward thrust that ensures progress. 

Over time, you will indeed see the headway that allows your baby to weather the winter in time.



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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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Best for Whom? 

9/28/2012

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I’ve been there. I was convinced that my daughter needed to be home-schooled. She struggled with extreme volatility, excessive obsessive behaviors, sensory issues and incontinence as well as lacking the emotional maturity of her peers by several years. Additionally, although only in the second grade, she was already decoding words on an eleventh grade level cracking jokes with the sophistication of a young adult. She was horribly vulnerable, completely oblivious to the impact her behaviors had on others. She internalized the messages from the scowling faces not in light of her rages, but instead as a reflection of her own lack of worth or like-ability. I knew this, and hated myself for failing. I was about to mainstream her in our neighborhood school. 

What does failure look like for a Type A mother?  Anything that falls short of “the ideal”. The ideal was home-schooling. I had already home-schooled her for half of kindergarten, all of first grade, and now half of second. Meanwhile, I had a new baby, lived in a new town with next to no friends, and could not attend church functions or social events to create them. After all, who can babysit a newborn and a screaming volatile child at the same time? 

I made the right choice. I put her in school. I didn’t do it for her. I did it for my mental health. I did it for my other daughter with whom I continued to homeschool and build relationship for the next 5 years. I did it for my son. I did it for my husband. And it was the hardest thing I had ever done because it wasn’t what was best for her and I loved her just as desperately as I loved all the others. But it was right, and the Idol of Ideal came crashing down. 

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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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