The Special Needs Rabbit Hole

rain toronto

I’m in a lonely place.  My child has an illness with no obvious cause and no guaranteed cure.  While there are stories of spectacular success and healing, there are far more on the failures, those who never found a way to thrive in the mainstream band.  The hardest part of this illness is the social rejection and constant criticism, which can lead to a negative spiral of depression, anxiety, self loathing, and even suicide.  While our son’s days and weeks vary like the weather.  We cling to the progress he makes in inches, not feet.

Eight years ago, I never imagined I would have a special needs child.

Even as a baby, my son showed no obvious signs of the disabilities that would plague his days and nights, struggling with self hatred, suicidal thoughts, anxiety, and a noisy brain.  I hadn’t yet been sensitized to the signs of trouble to come, nor was I prepared for the journey I would take.  If anything, he seemed like an exceptionally bright, happy, thriving human.  Never in the years honing my parenting skills with his siblings, reading dozens and dozens of books on child development, nutrition, emotional IQs, positive discipline and blessings of skinned knees, did I anticipate the tyranny of normalcy.

So long as your unusual attributes do not swing outside of a socially approved matrix, you’re fine.  You can be severely mentally challenged as long as you are sweet and mild.  You can be severely physically challenged as long as you work harder than anyone else to compensate and prove you can do for yourself.  You can be severely emotionally challenged as long as you do not inconvenience or provoke others in any way.  The list goes on and on…

The world of special needs has opened my eyes and my heart to the challenges of being born a little left of normal, and left me with deeper compassion for those stuck in the shadows.

before truth can set you free

A sadly common remedy for inconvenient or misunderstood behaviors is violence.

Despite our culture’s Sesame Street values of tolerance and kindness, those who do not fit well into the predictable or desirable behavior model, are often punished, sometimes violently.  Invisible disabilities are slowly gaining some awareness but generally, most people assume negative behaviors are avoidable, intentional, or just bad parenting.  I’ve learned that nearly all negative behaviors are often unconscious reflexes by an individual whose brain or body is unable to cope with either external or internal stimulus.  There is often a reason for the behaviors, but not what most think.  Expert Dr. Hallowell stated that ADHD kids are the battered children of history.

“One of the biggest mistakes that has been made, really for thousands of years, is that the best way to help children with ADHD is to punish them more.  These are the battered children throughout history.  For thousands of years, they’ve been spanked, beaten, tortured.  And guess what, it does no good, and it does a lot of harm.”

Most people understand when a two year old melts down in a store and cannot be persuaded to calm down.  Other parents smile remembering their own days wrestling the angry octopus and non-parents may just find it mildly annoying domestic theater.  But when an older child has this response, perhaps to a similar conflict, there is no longer any understanding for the behavior.  It makes people very uncomfortable because we still don’t have a framework for understanding what is going on when a person’s inner landscape is developing differently from what we ourselves know.  And we often project our own experiences or programming, typically unconsciously (“When I was a kid, my parents did not let us get away with that bratty behavior.  We got smacked and never did it again.  Harumph.”)

I’ve learned that there are multiple areas of development and no human being matures in every area at the same rate.  Most children do outgrow this type of response, but some take much longer to work through challenging emotions and situations.  You never know what’s going on.  Judgmental comments and stares are common.  If this behavior happens in school, the shame and social punishment is extended into the households of peers with gossip and from teachers who fail to support and educate when these situations occur.  I have heard from parents and teachers alike regret that “those kids” are not isolated away from their “normal” peers.

Is it any wonder that children who are not understood and supported often slip through the cracks and end up on a negative spiral?  

Like the older woman in Walmart who suggested my son needed a good whooping because he dared stand his ground in a (very) wide aisle when she could not be bothered to move her cart to go around him.  Or the mom of a fellow soccer player who bragged that her sheepish but obedient boy was “well behaved” because of the back of her hand.  Or the subtle violence of isolation and ostracism that so often happens in schools, among the students or as a by product of the “discipline policies” of in-house suspension and removal of privileges and access to activities.  And let’s not forget the tragic videos of abuse surfacing all over the country in schools where disabled students are verbally and physically harmed by teachers or police officers stationed in those schools.

I’ve had my share of direct experience with small town gossip, judgmental stink eyes, school yard politics, feigned concern, helpless shrugs, well meaning advice, cautionary tales from fellow special needs families, ineffective paid experts, patronizing professionals, confusing and contradictory prognoses, thousands (and thousands) of dollars spent on the next best therapy.  I started this blog to try and deal with everything coming at us as we struggled to decode what was going on with our otherwise normally developing child.  The massive gulf between us and so many “others” was unnerving.  What we needed most was some sort of network or community of support.  But because there is such tremendous ignorance across the board, few knew what they could say or do or how to help at all and we didn’t know how or what to ask for.  At least when someone dies, people know to bring food or flowers.  This is why families with special needs kiddos tend to find each other and hang on for dear life.

Children with developmental challenges seem to be America’s untouchables.  They are welcome to the mainstream as long as they can fit in and when they don’t, it’s perfectly acceptable to ostracize them or worse.

I had one high level “educator” justify the social bullying we experienced last year as “understandable.”  She defended it as “human nature.”  In her mind, if someone is unable to conform or fit in or “behave,” it’s their own damn fault and they better not use their diagnosis as an excuse.

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Unfortunately, ignorance about invisible disabilities among those in the teaching and helping professions is high.  They attend one conference and feel they’ve got it covered.  Any parent of an affected child can attest to the countless insults and accusations from so-called experts.  Depression, isolation and grief are very common.  Depression because there are no clear answers shining forth from the morass of real and projected fears.  Isolation because of all the judgements and misunderstandings.  And grief for the healthy normal child you expected or just hoped to have.

But there is ALL KINDS of HOPE for those affected by ADHD.  The greatest thing is that most of the strategies and supports that help ADHD kids, help everyone.  The coolest thing is that figuring out how to help our son has helped all of our children.  Our more neural typical children had more going on than we recognized pre-ADHD diagnosis.  We had no idea why our middle daughter was failing to manage her homework or having epic meltdowns until we learned more about ADD and what was happening in her processing of information during her classes.  We didn’t really understand how isolating it is for siblings of ADHD kids when they have to constantly explain or defend the mysterious behaviors of their sibling to other kids at school.  And we didn’t know how anxiety and depression are intertwined and are often present in the same person, sometimes rotating through their experiences when not addressed head on.

We’ve learned a lot.  And I hope we can help anyone who stops by here to get farther faster, feeling less alone, than we did.

What I Know For Sure

1.  ADHD is a diagnosis that is still in flux.  They’ve now identified at least six different types or areas of the brain that can produce these symptoms.  They think that up to 70% of those diagnosed do not outgrow it but those statistics are fuzzy and vary depending on who you ask.

2.  We know that medications do help but because most people have no idea the true cause of their symptoms (which area of the processing system that is most affected or what is blocking normal processing), using modern medicine is like throwing darts.  Everyone I know (sadly too many) who have been down this road, are forced to experiment with medications, therapies, education and work models.  The more science is learning about what areas of the brain are affected and how genes influence neural processing, the better we can help calm or mitigate the noise that can really impede learning and growth for young children.

3.  People with massively different processing pathways just cannot fit into a little square hole.  If and when they do, it’s typically a very uncomfortable fit.  Understanding that brains are not all the same and making accommodations for how people perceive and process information can only enhance our understanding of the world and how to creatively solve collective problems.

4.  Do ADHD/ADD people really need fixing or is it the culture at large that expects standardized conformity the real problem?  Are ADHD/ADD brains forcing us to rethink this concept of conformity to standards?  Can we?  Will we?  If classrooms weren’t tethered to testing and a rigid concepts of “mastery” could kids with ADHD and ADD introduce some spontaneity and innovation sorely lacking?  Could neurally typical students learn to improvise and multi-task and leap from the scripted page?

5.  The most helpful therapies for ADHD /ADD are those that focus on positive reinforcement and allowing for variation in problem solving techniques.  Isn’t that beneficial for anyone?  Those with ADHD brains can reach great heights when they are motivated and supported.  The more I hear about all the negative outcomes for those with ADHD the more determined I am to focus on the positive and share the many stories of great success.

6.  Humans are social creatures.  Finding our place in the tribe is a critical part of survival.  In fact, I would argue that the social challenges, while painful to witness and work through, have taught our son more than we could have learned outside of school.  My son will continue to meet people who don’t understand the noise in his brain.  Because he is maturing and does care what people think, he is motivated to manage and modulate his impulses.

Perhaps the problem isn’t a noisy brain, but with the mass industrialization of thought and behavior.  Perhaps the gift of special needs is innovation in education and learning to include other perceptual lenses in our world?

While I can’t say it’s been fun, I’m grateful to have my heart and mind expanded by this really special child of mine.

In healing,

Elle

If you are curious when we first realized something was different about our son, please check out my next post:  Fighting To Be Born.

7 thoughts on “The Special Needs Rabbit Hole

  1. Very often I feel very lonely too. My son has different labels or diagnosis. “Severe autism” non verbal, and just recently psychiatrist add “intermittent explosive behavior” a new word to deal, more than a word, another label to justify the continue trial of different medications. English is not my first language, so yes…it took me a while to read all you wrote. I thank you for sharing your thoughts, certainly many seeds for thought. I find my self sad about the isolation we live, and the future without friends for my son, he is 10 years old, and so far…no friends near or in the horizon. I try to focus in the little or small progress he does, but wondering about the future is depressive, time is passing fast and at this velocity…I hope we can catch up so one day he can be an honest, happy and independent man. Thank you again.

    1. Oh, sweet friend. Thank you for sharing. My heart aches for all the children and families who are without a compassionate network. Is there a church or community group anywhere near you for special needs families? There must be something? Now that I say this, I am wondering if there is such a thing here near me? I was away in Oregon this summer and found a WONDERFUL camp FULL of amazing families, many, many ASD families, too! It is called Camp Yakety Yak. The founder is amazing mom of two kids with ADHD. She has assembled an incredible group of counselors and aids with an incredibly supportive curriculum so all these kids, no matter their challenge, can have a positive camp experience. I had to google it and it wasn’t easy to find but I’m so glad I did find it. I need to find something like that here…now that I know such a thing exists, it gives me hope. While we’re so tired and drained, it may seem impossible to summon even more energy to seek out support, I feel it may be essential. Please check into it….and keep me posted. You are often in my thoughts and prayers, my dear. xo

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