A Compassionate Voice for the Parents of Children with Hidden Disabilities
Melanie Boudreau
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Not Good Enough

2/26/2020

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Earlier this week I had worked out a deal with a Turkish company to use my photography in a product they manufacture. The arrangement crashed upon discovery that some invisible quality of my photography is not good enough, resolution numbers behind the scenes defining how large my photos can be expanded. I use an iPhone as my camera. That is all I have. It has been enough, until it wasn’t. My inventory of thousands of pictures --  not good enough. 

Not good enough for some invisible, non-rectifiable reason that I do not really understand because it is numbers and math and technology.  Numbers. In the highest reading group, I nearly failed sixth grade over my non-existent math skills. I cheated to get through summer school and progressed on to the seventh grade. I am not proud of that. 

Not good enough reverberated through me today taking an ax swing at old wounds. It is not just my cherished but useless collection of photos, but all the things my heart has dreamed and not seen brought to fruition, including certain yearnings for my adult children, and restorative work in developing nations. Hope deferred, over and over again. Pain.  

Inadequacies lurk beneath my surface— not good enough to make everything all right for those I love. Outcomes I was never meant to control. Things I cannot see or understand this side of the veil. 

Can what God brings to fruition be enough to satisfy me? In truth, I need to find my satisfaction in Christ alone, not in the realization of all I desire. I have seen many well-meaning posts proclaiming, “I am enough!” I am not enough. I am not near enough. What I am however, is beloved, and in God, doors and opportunities open for me well beyond the sum of my strengths, likability, intellect or resources. 

He is enough. In the midst of recognition there are and will always be ways I cannot measure up, things my good heart cannot resolve, today He has reminded me in Him I am everything needed anyway. 

Join me in prayer? 

Father, Jesus, Holy Spirit, 
You alone are worthy, our God of mercy and grace Who invites us into Your inner sanctuary for communion. Open palms before You, we surrender to You once again all outcomes, unresolved crises, all the ways life screams at us about our inadequacies. We declare it is in our weakness Your strength is on full display. Your power is made perfect in our weakness as we yield to You, and draw near in utter dependency. We declare Your grace is sufficient; You are enough, and that is enough for us, in Jesus’ Name.

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My Daughter Speaks Out on Suicide

12/21/2015

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Guest blogger this week is my daughter, Carly Boudreau. The holidays are tough for many. Today she talked to me about what she wished us neuro-typicals could understand as she and her friends try to cope with shifting chemistry and suicidal ideation. I invited her to share an insider’s perspective: 

“I keep thinking I could just drive myself off the road.”

​My good friend came to me with this sentiment not even a week ago, confiding several other things along the way.

​“I feel like my friends don’t really want me. I feel like I don’t matter. It’s been a hard week.”
​A healthy person’s response to conflict or pain isn’t usually “I want to die.” It’s “I want this to stop. I want to feel better.”

Responding to Depression

But for those of us who already struggle with the undertone of depression all day every day, stopping seems like an impossibility. Sometimes we just want our constant feeling of sadness to end. And with the idea of getting “better” being an impossibility of chronic illness, well... we jump to mental conclusions.

​​​I know, I know. What a depressing train of thought! But that’s why it’s called depression.

​It’s scary when a loved one, especially a loved one with a history of depression or suicidal tendencies, comes to you with this idea. There’s a whole host of things flying through your own brain in response.

“Of course you matter! Aren’t I doing enough to show that at least I care about you?” And of course, “Dying won’t solve anything! Please don’t kill yourself!” It’s tempting to voice all of those thoughts.

Ideation vs. Intent

​But as someone who struggles with depression myself, please remember that ideation is different than intent. Intent has a plan and an immediate threat, ideation does not. If we can't talk about ideation without fear, we certainly won't feel safe coming out about intent.

It’s important for us to be able to talk about our feelings of ideation.

​When that train is running, it runs on a circular track. It’s hard to derail a train of thought when there’s nothing for us to switch to, and we dig ourselves deeper into that same rut.
Please remember that ideation is different than intent. Intent has a plan and an immediate threat, ideation does not. 

If we can't talk about ideation without fear, we certainly won't feel safe coming out about intent.



Give Room To Express Without Overreacting

​Sitting quietly on things like catastrophizing internal dialogues, depression spirals, irrational fears, and suicidal thoughts can help cement them in place and give them more power than they should rightfully have.

​Imagine if every time you tried to express you were feeling bleak everyone around you started crying, shouting, telling you not to die, and trying to take you to hospitals. You’d never want to share again, much less when it was really serious!
​If you are really concerned, however, it is okay to ask “are you safe?”

Just give us the opportunity to answer “yes” and prompt us to continue.

​It’s isolating, and it makes us feel guilty for having these feelings in the first place.

Mentioning wanting to die is not automatically an admission of being suicidal, and it shouldn’t be treated as such.

​If you are really concerned, however, it is okay to ask “are you safe?” Just give us the opportunity to answer “yes” and prompt us to continue.
​​Read between the lines. “I’ve been feeling like walking into a road all week” means “This week has been really hard for me.”

​Listen to and care about that struggle. If you get the opportunity, the best thing I know how to do for my friends is remind them of a simple fact: We don’t actually want to die. Ideation is not intent. Ideation is the formation of an idea and the process of putting it on a pedestal. 

You Have the Power to Isolate or Put Back on Track

Giving us an alternate perspective is incredibly useful in those times when we’re trapped in a mental circle.
​​After all, we don’t want to die, we just want to stop being in pain. We don’t want to die, we want to live a better life. It’s just very hard to frame it that way by ourselves.

​Our being allowed to talk about these things candidly, without fear of repercussion, is your opportunity to speak light into a bleak mindset.
You are the one with either the power to isolate, or the power to redirect that track and put us back on the path we were looking for.
​You are the one outside that speeding train of thought, outside the locked track, and outside the rut we’ve wound up in. You are the one with either the power to isolate, or the power to redirect that track and put us back on the path we were looking for.
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Doesn't God Heal? 

8/13/2013

2 Comments

 
I serve a God who heals. Some of my friends are the kind of people who travel internationally to proclaim God's word and experience first hand miraculous signs and wonders, dramatic healings that defy science and glorify God. I know God heals, yet my child who has now reached adulthood is still at home, struggling with anxiety and depression to the point of being disabled in some seasons. Yet she is a delight to my heart, and a huge help to me at home. We press in for healing, utilizing medical intervention as well as prayer, but in the meantime we trust God is good, all the time. He walks us through the valley of the shadow of death, not around it. 

We miss the passage in Hebrews about the heroes of faith that says some women received their loved ones back, while others were sawed in two! Granted, the context of the passage refers to persecution for faith, but the truth can be generalized. Those families cried out for deliverance too, just like me. There are those crying out to God for an outcome as good as mine. There are those crying out to God for an outcome as good as yours. Perspective is everything. In the midst of our most drama filled years, I would call my friend who adopted a sibling group of four with their propensities toward addictions, counseling needs and brain chemistry challenges. I used to tell her I called her to gain perspective, but that she needed to call a Thai tsunami victim to do the same! No matter what our battle, He is there to walk each of us through. One thing I know, neither life nor death, rage attacks, humiliations, incarcerations, surgeries, or school expulsions can separate us from the love of God.

Psalm 23:4, Hebrews 11:35-40, Romans 8:38-39

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Coming Soon, If Next Year Rates as Soon! 

8/2/2013

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Toppling the Idol of Ideal
Raising Children with Special Needs

The stats are changing. It’s no longer just the rare family who has the autistic child we read about in some magazine article or see on television. Behavioral issues in our children have catapulted out of the realm of child raising and psychology and into the realm of neurobiology and psychiatry. Whether resultant from neurotoxins in the environment, dietary criminals or some other etiology, more and more families are receiving diagnoses of ADHD, autism, or other legitimate neuro-psychiatric disorders.

Is the church late in constructive response? We may be unintentionally too quick to offer counseling or deliverance with no real grasp that neurology is not necessarily a spiritual problem and definitely not a parenting problem; it’s brain chemistry. This leaves Christian Moms and Dads potentially susceptible to the myriad of uninformed voices, voices that decry the pharmaceutical industry as evil drug pushers for profit, and voices blaming lack of quality parenting for most if not all behavioral challenges. 

It’s not sympathy that’s needed, but rather hearing from somebody who “gets it”, somebody who can discuss practical issues like fighting despair, judgment, and educational challenges, deciding about medications, labeling our children, IEP’s and 504 behavior plans. Perhaps most importantly, what is needed is not only assurance that our children will be alright, but that we will survive intact spiritually while grappling with why me, why us, and why my baby? If you are that parent, You will enter into a new season, a season of discovery that launches you from a battle-weary position dodging the fiery darts of the enemy, to a position of protection reclining in the strong tower of God’s abiding presence. 

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Drawing Battle Lines

5/25/2013

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When my son was in the first grade, his classmates were mostly accepting and his teacher understanding. Yet my son’s vocal and motor tics caused him to find ways to compensate. What does even a young adult do to compensate when accidentally making an aberrant noise in a room full of peers? Some blush, some wish they could go hide in a hole, while others make light by offering a joke about barking spiders or feigning their neighbor’s guilt. I think one has to be at least thirty before possessing the poise and grace to just say “Excuse me” without a second thought! And that’s for just one infraction, not infractions that happen repeatedly, every single day of their lives. 

My son’s school psychologist came to observe in the classroom and witnessed clowning behaviors. The psychologist’s assessment included the judgment that my son was an attention seeker. Really? Exactly the opposite was the truth. Comic behaviors in the midst of tics are to conceal the tics, because the more controlled gross and fine motor movements become for an aging child, the more obvious unwanted movements become. And what’s worse, sometimes the tics themselves can be humiliating. For a painfully prolonged several weeks, my son had a complex motor tic slamming his fist into his groin in a knock out punch. He neither enjoyed this or thought it was funny. He was mortified, humiliated and in pain. He could blush, go hide in a hole, or make light of it, all the while dying a thousand deaths as a school psychologist further assassinates intentions labeling my son as attention seeking. 

These mischaracterizations tempt us as parents to go Mama Bear on our children’s overseers. A level head with aim for advocacy is wiser. I pretend that we are all on the same team, and all believe in my son as much as I do. Visualization is a powerful tool. Loyalties are created through offering grace when communicating how observers are getting it all wrong, terribly wrong, by using face saving heedfulness. There are times this takes as much self discipline as we used when our obstetrician told us “Don’t push!” and we wanted HIM to die a thousand deaths. This is our battle to fight, and when battle lines are drawn, the more warriors you retain on your side of the chalk line, the better. 

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To Speak or Not to Speak

11/29/2012

4 Comments

 
No matter how much you have observed, you can not diagnose another. 

But you certainly can spot symptoms from a mile away once sensitized through exposure to those close to you with similar maladies. In the beginning, I couldn’t see my own child’s tics. Now I spot anyone’s tics from a mile away. Autistic idiosyncrasies are not always apparent to the untrained eye. Yet those who recognize the patterns suspect almost immediately. Manic symptoms follow a predictable trajectory, as do many mental health clues.  

Recently I counseled with a friend about bipolar symptoms, and what to do as an observer of another family’s challenges. As a woman my own age with various life experiences, she gets it. Here’s the risk you, my friend, or I face. We might offend someone if we indicate to them there may be a mental health issue and not just behavioral oddities. But here is the greater risk. Most people have no clue about mental health issues.  With no clue, there is no seeking of treatment. When one of mine was still little, there were classic symptoms that should have YELLED obsessive compulsive disorder to me, to teachers, and to health professionals. Collective ignorance created a gap of three years before diagnosis and intervention. 

Speak out what you see, sensitively and non judgmentally. If you have already made relational deposits in the bank of another, your instincts should be trusted. The counsel should never include a diagnosis, even if that diagnosis is obvious to you. Unless you are a licensed psychiatrist reading this blog, you can not, may not and should not diagnose another person with a mental illness. But tipping them off to get evaluated by a mental health professional just may save a life. 
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Take This Child!

10/12/2012

1 Comment

 


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

1 Comment

 
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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