A Compassionate Voice for the Parents of Children with Hidden Disabilities
Melanie Boudreau
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I Hate Parenting Books

9/27/2015

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Photo by Jason Bolonski
Parenting books describe ways to mold typical children. The problem is, however, that children with hidden disabilities are not typical.
I made a wonderful new friend recently. She asked me what I speak on, and I told her "raising children with hidden disabilities and the church's response to mental illness since mental illness is also a hidden disability." 

I quickly discovered she has a child on the spectrum. A comment she made struck me.  

​She simply said, "I hate parenting books."  I knew immediately what she meant!

Parenting books describe ways to mold typical children. The problem is, however, that children with hidden disabilities are not typical. So your average run of the mill parenting books serve only to frustrate.

Much of the advice does not work. And even worse, the wisdom contained in their pages only seem to fuel our detractors, providing further evidence of imagined "parenting deficiencies."

We met the personification of a parenting book in a Behavior Specialist in Denver, fresh out of college, who insisted that "if you do this, your daughter will do that" like Pavlovian's dog. $3,000 and six months of intervention wasted.

The child label "atypical" is aptly descriptive. But over time, we begin to tease apart the patterns, and gain mastery over triggers and can even predict behaviors soon enough to avert them.

​We learn ways to come along beside our children and teach them what seemed so elusive at the onset. We find a tribe of health care professionals, educational specialists and other parents who understand, and together, we can knowingly smile when handed a traditional parenting book that we will quickly shelve. 
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The Route to a Beautiful Outcome

9/20/2015

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PictureMom and Dad
My mother-in-law wrote my husband Chuck recently. She was reminiscing of a day we spent together in Colorado when we snapped her favorite picture of her and my father-in-law before he passed away. It's a glorious photograph of mom and dad with the foothills of Pikes Peak, America’s mountain, poised in the background. In the foreground are the warm smiles and loving embrace of a beautiful couple.

The route to get that memorable photograph was not a traditional one. It required us to pile our parents into our van and drive them up a bumpy, unfamiliar, unpaved mountain road. When Chuck turned the van off the highway and on to that road, our pace slowed dramatically. For quite awhile our vehicle bounced and bumped as we encountered rocks, switchbacks and washed out road conditions. 

In the moment, our passengers verbally and non-verbally expressed their doubts to us about having chosen to navigate that particular road. All these years later, the lasting result was worth the transient discomfort of the route we chose to get there.

I loved my husband's response and the poem he shared with her :

We could have driven home that day from our Blue Bell ice cream excursion in Woodland Park via the smooth, predictable, efficient route down the highway.

Instead, we went another way home via Rampart Range Road. 

I'm so glad that we persevered that day...up, across and down that slow, bumpy, washboard mountain road...an alternative, inconvenient route towards home...to make that memory. 

The route to a beautiful outcome is often marred with turbulence.

Chuck

The Road Not Taken - by Robert Frost

Two roads diverged in a yellow wood, 
And sorry I could not travel both 
And be one traveler, long I stood 
And looked down one as far as I could 
To where it bent in the undergrowth; 

Then took the other, as just as fair, 
And having perhaps the better claim, 
Because it was grassy and wanted wear; 
Though as for that the passing there 
Had worn them really about the same, 

And both that morning equally lay 
In leaves no step had trodden black. 
Oh, I kept the first for another day! 
Yet knowing how way leads on to way, 
I doubted if I should ever come back. 

I shall be telling this with a sigh 
Somewhere ages and ages hence: 
Two roads diverged in a wood, and I— 
I took the one less traveled by, 
And that has made all the difference. 

And so is life, as orchestrated by our Heavenly Father. Perhaps slow, bumpy, and turbulent in seasons, but all the while positioning us for a beautiful picture of what we have become as His beloved. 
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I Would Rather Laugh

9/12/2015

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Absurdity is truly hilarious, as soon as I stopped caring about what other people thought.
Atlanta has a way of retaining airline passengers beyond their anticipated stay...downpours, traffic jams on major arteries which feed into the city, etc. I wanted to get home to Colorado!  

I balked at my prospects realizing how late I was arriving at Hartsfield-Jackson and chose instead to ditch the rental car FAST, catch the train, get through security, and race to my gate in hopes of angelic intervention and a miracle. Running is never a good idea for a fifty three year old woman whose last comfort stop was by necessity a rural roadside bush an entire hour outside of the beltway. Once a mother has birthed three children, jogging through airports, springing on trampolines, or landing ski jumps present unique challenges beyond coordination. Today was no different. 

With literally only thirty seconds to spare, I strode down the jetway at my gate triumphantly, grateful for my serendipitous choice of outfits which included hikers and an athletic jacket that could ever so fashionably be tied around my waist in such a way as to conceal. There is a God in Heaven! 

In years past, I would have been mortified by my situation. The indignity suffered may have humiliated me in my younger days, but I admit, the ludicrousness of my airport dash left me smiling, as did the jolly old man with the Monopoly-esque black top hat, and the teen wearing bunny ears that draped to her waist on the tram. Certain to elicit a smile from my now adult daughter with hidden disabilities, I took the time to text clandestinely snapped pics to her, the same daughter who used to cause most of the stares directed my way. 

Half the stress of our children's public tantrums comes from caring more about glares than about how to diffuse tension for the sake of our child. 

I discovered that sometimes the best way to shift a situation was to see the immediate humor.  It is easy to focus on the meltdowns as we raised my daughter with hidden disabilities, but just as often as the rages, she laughed uproariously. She was born knowing what was funny. I learned to see the humor in otherwise stressful situations, like when in a waiting room and I was reading James Dobson’s The Strong Willed Child, while my daughter kicked and screamed, rolling around on the floor by my feet. And that was my neuro-typical child. 

Joy comes easily to me now. Absurdity is truly hilarious, as soon as I stopped caring about what other people thought. I will never stop caring about how other people feel, but what they think about me when I am doing the best that I can with the situation I am facing, no longer concerns me in the slightest. 


Why wait until you are old for this freedom? 



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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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    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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