Louise Made Me Cry

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A journal entry – Thursday June 25, 2015

“Louise made me cry.

I didn’t realize how close to the surface the despair had been lingering.

A kind gesture, a hug, an empathic word were enough to tap the sadness pressing on an impossible journey.

I’m supposed to know what’s wrong.  How to fix it.  And I don’t.  And I haven’t.

I lost my pride a long time ago.  But I cling to the possibility that all of those ledges are steps and not cliffs.

We’ll make it.

All my sweet babies are just going through the necessary dark and gnarled soil of maturation.

I even try to tell myself that all our expectations of normalcy are part of the problem.  If we just relax and continue to set boundaries.  To love them fiercely.  They’ll rise into the lovely humans we’ve seen in there from their first brave gasps of life.

But the doubts linger like ghosts haunting the shadows, tapping on us when we’re drifting off into our day dreams or hard earned slumbers.

Beating back the thorns and bramble along the path we’re on is weary work.

After two to three years, I can’t remember any more, I only sometimes notice the raw, jagged scars along my skin and limbs.

Sometimes I am surprised to see my own face, an aging stranger to my determined heart.

The battles don’t seem like battles until I dare to rest.  I fear I’ll not have the strength to get up.

I pray each night for the strength to always get up.  Again.  To protect my babies as long as they need me.”

Bullying is a Disease of the Brain

 

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Bullying is a disease of the brain. And until we tame the brain with our hearts, each of us is at risk of being a bully in some way, most tragically with our children. I have learned many things from having a special needs child, but this one has been one of my greatest teachers.

You see, until we understood what our son was dealing with in his own brain and body, we thought he was just behaving badly — intentionally. We interpreted his behaviors through a lens of “how children should behave.” Full stop. Doesn’t everyone? Even the specialists we took him to measured him based on a standard of “normal” or compliant, rather than inquiring about WHAT was interfering with his natural human desire to be part of rather than in opposition to his tribe.

Our culture has a very rigid view of children. Yes, we debate parenting styles and love to gnash on entitlements or privileges or perceived failures or short comings, but the truth is that a narrow set of behaviors are rewarded and the rest are thwarted to some degree, often involving violence (spanking, beating, bully fights, gangs, “military school,” prison). And all too often, if we cannot control our misanthropes physically, we drug them.

Very few in our culture attempt to understand those who “fail” to conform or behave as desired by this system of expectations. I believe this is a critical time to increase this knowledge base or we may see our recalcitrant populations explode.

The result of this culturally based institutionalized rubric for “raising a well behaved child” is that we layer on rules and expectations without regard for what is happening to our children biologically. We, as a culture, have a very authoritarian punitive standard to which everyone must conform. Science is struggling to investigate and offer solutions. We are losing the race on many fronts, but there is one left that always works.

Love. And by love, I mean heart.

I would like to suggest that if we organized our communities, schools, organizations, teams around the HEART rather than the brain, the incidence of bullying would dissipate. Because I believe that bullying is a disease that is transmitted through the brain, if we can infect the heart with understanding, compassion and acceptance of visible and INVISIBLE differences among children and consequently the larger populations, the intensity of conflicts and bullying would fade away.

Imagine assuming nothing and inquiring instead?

Imagine including rather than excluding?

Imagine finding common ground rather isolating?

Our children do not need to be punished.  They need to be understood and valued.  If a child is truly valued, then how or why they struggle matters. The approach is no longer about punishment, but support.

Dr. Hallowell famously said that ADHD children are the battered children of history.  I would argue it’s not just ADHD kids.  We have an epidemic rate of childhood learning, developmental, health and behavior challenges happening right now and it’s escalating. Most children appear to be burdened by various health, sensorial, processing or behavioral differences to some degree. This means that one size cannot fit all. It just can’t. And expecting all these children to perform to a narrow ideal is rather sadistic.

Every one of us is a bully as long as we cling to an ideal and adult expectation of childhood behavior, especially those expectations borne of eras gone by when healthy brain function was not under threat DAILY from poisoned air, water, soil, frankenfoods, stealth viruses (PANS, PANDAS), pathogenic bacteria (implicated recently in autism), as well as so called modern chemically derived medicines.

I can already hear the chorus of parents and others saying “But, but, but….”

The children are struggling and need us to open our eyes and our hearts. They want to find their place, their purpose and their gifts. But many of them are physically hampered due to the toxic world they’ve been born into. Our children are not immune to what is happening in Rachel Carson’s Silent Spring. Would you shame a fish for being born without fins? Our children deserve more credit and way more support.

One of my personal breakthroughs as a parent was learning at Brain Balance how intelligence and perception can be literally locked inside a brain where the pathways are jumbled or crossed or leading into dead ends.  It’s not that the child refuses to read or listen, it’s that he/she CANNOT.

Yet.

My son was not trying to disobey or disrespect me.  He literally could not do what I asked.  If I asked him to do three or four different tasks in one sentence, he dropped the first three entirely from his memory to grasp the last. Once I began to see his behaviors as struggles rather than defiance, the tension and conflict simmered enough for us to peel the onion of his misfiring body and brain. We were able to make better therapeutic choices for him that improved his wellbeing and behavior incredibly.

What if there was a way to empower ALL children (and adults) to reach out and befriend kids with special needs?

What if rather than “anti bullying” campaigns, schools and teams began “PRO FRIENDSHIP” campaigns where any child who sits alone or outside the game, the project, the adventure, is made a critical participant?

What if the child who misbehaves is circled and supported rather than taunted, isolated or punished?

Can you imagine the shift?

I think it’s time to inoculate our brains with a big dose of heart centered LOVE.  Like these boys are doing:

This gives me HOPE friends!  So much hope!  If these boys can figure out that what special needs kids need most is a friend, there is hope for all of us.

xo

 

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Little Victories Add Up

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I was worried about Little Man’s birthday party.  I held my breath until the first RSVP came in.  There were five enthusiastic YESes, including one from his regular 3rd grade class!

“My son is so excited to come.  He never gets invited to any parties.”

That was what I heard from TWO different families.  Both boys are in special education.  One is like Little Man and only goes to the class when he checks in or needs a break.  The other spends a bit more time there due to his more complicated learning differences (high functioning autism).

One boy came over earlier than the rest and Little Man had one of his first solo play dates.  I was thrilled to see the mutual joy and appreciation they had for this time together (see video below):

We invited the boys to come play legos, see Star Wars with the possibility of video games for a “late over” birthday party.  Little Man really had his heart set on a “sleep over” party but we eventually convinced him that might be too much for this age (9-10) and that most of these boys were going to their first party, too.  Everything went more or less according to plan.  I learned later that boys this age do not tend to sit in the theaters if there are arcades just down the hall.  Thankfully, I had a sitter to help with the boys who needed to get up and take breaks.

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During pick up at the end of the night, one family said to me, “We knew we had to get our son to this party when we got his invitation.”

“Oh?  Why is that?” I asked.

“Because, he wrote this incredible note to go along with it and we just knew that we had to get to know him and your family better.  We were so touched by it. It was obvious he really cared about this party and each person he invited.”

What?  What note?  I had filled out all the invitations for him since writing is painful for him.  He doesn’t write ANYTHING unless he has to.

The mom sent me a copy.

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First of all.  HUGE amount of writing.  Voluntarily.  And some of his best so far.

Second, my heart swelled and broke all in the same moment imagining Little Man sitting down at school to do this before handing out his invitations.  He wanted to make sure that the boys he invited AND their parents knew all the details and would be excited to come.  He was afraid no one would come.  But he put his best foot forward anyway.

Last year, I took him to Legoland rather than subject him to the disappointment of a forced or scarcely attended party.  He had so many struggles with his peers.  I couldn’t even get him one play date during that year (believe me, I tried…that’s another blog post).  Even during our mostly pleasant trip, he upset kids and parents with his wild antics, running, pushing, hogging the ball machines, “zooming” legos off ramps despite younger kids being in the line of fire.  I remember feeling really hopeless because it was clear he could not fully control all these impulses.  Sensory overload exacerbated his weak impulse control.

Oh the glares I got from parents who were bold enough to say, “He deserves a good spanking.”

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But for every critical and rude comment, I got just as many compliments.  The guy at the restaurant who thought he should be in movies because of his radiant joy and humor.  The woman at the hotel who was charmed by his manners (he does have them).  The little boy who was crazy about him and wanted to play Minecraft “even after we go home” though he was confused about Little Man’s foul mouth (me, too).

Last year was a study in constant contrast.  Here is a child who is clearly very bright and yet has learning and behavior challenges?  Here is a boy who is desperate for friends but fails to manage himself enough to be trustworthy.  Here is an experienced mother (of four) who thought she knew what she was doing as a parent only to find this child with mysterious challenges and no obvious solutions.  After a while, it became easier to just stay inside, stay at home, avoid the inevitable collisions between expectations and reality.  It was an isolating year for both of us.

This year has been RADICALLY different for Little Man and our family.  I don’t know which of the many therapies and treatments have had the most impact (I need to do a thorough review of each of them here), but I do know that things are changing rapidly for him now.  He now has a few friends.  His classmates all had very kind and complimentary things to say in his birthday book (funny, nice, kind, helpful).  He now has more control over his impulses than ever before.  He now has a sense of calm and confidence as he masters expectations at home and at school more consistently.  He is maturing in the best possible ways.

The morning after his 9th “late over” birthday party, he left me this note on my laptop.  As you can imagine, I burst into grateful tears.

 

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xo

PS:  If you would like to stay in touch with me and my writing on my main blog, I will be sharing some amazing tools and insights on mind+body+spirit.  I just recently recorded an incredible interview with my mentor and friend, John English, on “Taking the Hero’s Journey” in our lives.  It is a free gift to those who subscribe to my blog email list.
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The Greatest Adventure Awaits in 2016!

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And I would love for you to join me.

I am getting ready to embark upon my very own hero’s journey, Joseph Campbell style.  Over the past several years, I lost my mojo.  I was treading water, but not making headway on my goals or dreams.  I had so many “people and things” in my way.  Or so, I imagined.  Being a mom, wife, mid-life aging woman.  All the stress having a child with ADHD (another with ADD, another with Depression).  The story I was stuck in was not very inspiring and certainly disempowering.

And while I did my best to “write it out” as I am inclined to do, I was not scaling the walls of my well very quickly until I made some incredible discoveries that have radically changed how I feel about myself, my life and everything around me.

I have some BIG plans for my life, on every level, this year.  I invite you to follow along on this adventure as I put insights and tools to the test and seek to manifest my dreams.  While I have confidence in my abilities, I am only human and old habits can be tricky.  There may be difficult times along this journey and I intend to be as transparent as possible.  I also want the accountability.  If I can do it, YOU can do it, too.  So, let’s get there together. Please click ====> HERE to subscribe to my blog so we can stay in touch.

My greatest passion and desire is to fill the world with light and inspiration through story.  I will continue to share our adventures healing ADHD.  I’m even thinking about an online course for parents to help shift perception and as a result, all that stress!  I am excited to be completing my novel FREYA WOLF, finishing the PALE GRAY LIFE project as well as some incredible film projects.

Thank you for subscribing and following along to this point.  I did not want to leave out my DECODING ADHD peeps.  I cannot wait to share what I’m working on and offer you first look as well as opportunities to participate in the unfolding of the power of life.  My greatest passion and desire is to fill the world with light and inspiration through story. Please don’t forget to click the link above so we can stay connected.

Namaste,

Lisa “Elle”


PS: Please forward my blog or email with anyone you feel would appreciate this work, particularly if they share the passion, power and purpose of illuminating the human heart.

PSS: HERE is the url in case the link above doesn’t work.

Birthday Wishes

hand bestIt’s that time of year again.  We have a birthday (tomorrow) with cake, and presents.  But we might not have any friends to invite.

“No one has ever invited me to a birthday party,” he said matter of factly.  No obvious hint of dismay, other than the slight downward inflection at the very end which I picked up on because I know him so well.  Even when contemplating something rather sad, he refuses to be discouraged. (full disclosure, he HAS been invited to several birthday parties but they were mostly in preK.)

That’s my boy.  The enthusiast.  The optimist.  The unsinkable master mind of a million contraptions, inventions, solutions, businesses, ideas.  Despite his real and documented struggles with attention, impulse control and dysgraphia, he doesn’t see anything as a real obstacle.  Just a speed bump that he can get past.  Eventually.

Unfortunately, he’s facing a world that continually wants to limit everything, especially kids like him.

The resilience so many parents want to “instill” into their kids, he has in spades.  I’ve done nothing magical to put it there.  It’s who he is.  It’s why he’s so hard to parent, coach and teach.  He doesn’t sit passively with anything.  He needs to investigate and explore and understand for himself, in his own way, and in his own time.  Period.  And most often, his time is light speed ahead.  Patience is possibly the most important thing we are working on at the moment.  He sucks at it.

We had planned to invite some boys for a late over birthday party before the holidays but our little guy got into a very unfortunate conflict with another strong willed child and ended up suspended according to the school policies and then kept in functional isolation for another month.  So, kinda hard to invite anyone to a party if you never get to see them.

When I asked the sped teacher who he should invite, I was only offered other sped students.  Little man volunteered that he would wait until the New Year and “reconnect” with the kids in his class he felt most friendly towards.

While I get two different stories, one from my child and one from the school, I’m pretty certain there is a third story that hasn’t really fleshed out.  But the rub is that my child hasn’t been able to live down his own reputation for past behaviors though he’s tried so hard.  The event before the break was a build up caused by the same boys from last year teasing and picking on him….again….

We have to wonder about the school social climate; how and why the social bullying is continuing under the radar without really any concrete interventions on the bullies themselves?  It seems schools are really only concerned about physical bullies.  Several friends/teachers have confided to me that the sad reality is that schools are not capable of intervening.  They don’t have the skill set, time or motivation.  It’s far easier to extricate the more difficult children.

We continue to coach and support our guy and thankfully he has a very positive attitude and determination.  He owns the consequences of his behaviors and keeps trying.  I wish the other kids would give him a chance.  I think most of them do.  It’s just a handful who feel the need to ostracize and tease him.  He’s drawn to them like a moth to a flame.  All we can do is keep reminding him there are other NICER kids to play with and that those “teaser” kids are not his friends for now….easier said than done.

We recently set up a game account (Animal Jam) and one of the security questions was “Who is your best friend.”  Little man looked up at me with a sweet little face, searching for a name.

I just as quickly realized the pain of not having even one friend to name, so I suggested our dog.

“Yes!” he said.  “She’s my best friend.”

Perfect…..

So, as we blow out the candles for his next year around the sun, we are praying for some real friendships to blossom in 2016.  Could be some of the older friends who’ve drifted because of age differences and inconvenience or new friends who will be eager to make time for him outside of school.  This has been a constant quest, a very non-trivial, heart breaking (for me as his mom) quest for several years now….Watching our friends boys run in small and larger packs of friends, while our guy asks “when can I play with xyz?”  And I can’t answer because I’ve heard no or silence too many times….

Tonight, if you are reading this, please say a little prayer for little guy as he ventures to school this week and hopes to entice at least two or three boys to his “late over” birthday party in the next week or two.  I haven’t set a date.  I can’t bear the thought of a party that no one comes to.  It’s easier to get busy and eventually say, “maybe next year.”

xo

 

Celebrate Every Victory

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Got a nice email today from school.

Little dude had a 100% day.

A perfect score.  Every teacher perfectly happy with everything.  On task.  Respectful.  In control.

This may be something most people just take for granted.  No news is good news, right? But for my guy, whose every movement, utterance or attitude is tracked all day long, to not only “make it through” but SHINE enough in his impulse control and behaviors to get 100 EFFING % is something to CELEBRATE!

It’s just one day.

But it’s one MORE day than he’s had in two very long years in the structured school environment.  It’s one MORE day of self mastery and proving he does have the skills to learn and cooperate.

It’s HUGE progress.  It’s a SIGN of growth and maturation.  It’s a SIGN that all our efforts to support him are working.

He no longer wants to die.  He no longer finds himself ostracized by ignorant, judgmental kids or adults (eh….mostly).

He’s putting it together. He’s pacing himself. He’s remembering to breathe. And smile. And believe in himself. And make friends. And focus when it’s necessary to learn and acquire new knowledge about something like math or science or art or music.

To know in his heart that his is AWESOME and he CAN do it.

He IS smart.

He IS lovable, worthwhile and GREAT!

We never take his great days for granted because HE worked so hard to get them.  And best of all, when he has a less than stellar day, he KNOWS it’s just a temporary setback.  He has learned to shake it off.

And slowly, my shoulders begin to relax and I breath deeper and calmer than I have in far too long.  My baby is going to be okay.

U Got the Sunshine!

The School Called And I Nearly Cried

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Whenever the school calls, I immediately tense up.

I got a call today.  1.5 weeks into the school year.

It’s usually the Discipline Lady.  Or the Principal.

Could also be the SPED (special education) teacher.

But it’s never good.

“Hi, so….your child is….okay….but…

We are writing him up for an incident…

He didn’t start it…but…

He pushed/kicked/swore/defied more than the others….

And we frankly just can’t figure out how to get the other kids to control themselves or be nice….

It’s just easier to focus on individuals and not group dynamics….

If he didn’t have an IEP he’d be suspended….so….you know….we’re kind of doing you a favor….

We’re hoping the parents of the other kids will instill the fear of God so we don’t have to….

It’s all within the law.  We’ve covered our bases.

It’s really just a formality.  We just have to let you know.

If it happens again we may have to take it to the next level.”

What’s the next level?  Hell?

I’m so tired of the complaints.  Some days feel like nothing but complaints.  Random kids in parks complain.  Teachers, coaches, neighbors, even family members.  People who know him, know us and even know a little bit about what he’s up against, still complain.

He is in the way.

He is not sharing.

He is refusing to comply.

He is not listening.

He is not participating.

He hugs too hard.  

He’s being rude.

He is swearing.

He is laughing at an inappropriate moment.

He is doing something dangerous.

He is playing with his sensory sand too much.  

He is spilling his sensory sand too much.

He is swearing too much.

He is out of control.

He is too loud.

He’s acting like a beast.

He’s too much.

And I’m supposed to fix it.

That’s the implication when your kid is misbehaving.  9 times out of 10, the solution is punish harder.  It’s an instinct and I get it.  But it’s wrong.   I’m supposed to know how to make him stop.  But it’s not that easy.  Sometimes the easiest thing to do is just leave.  I’ve learned to leave or just not bring him places.

Here’s the deal – ADHD kids have a big disconnect between knowing right from wrong and being able to tap into that knowledge when impulsive instincts take over.  It’s like trying to google the nearest public restroom with no wifi…you’re going to pee your pants before you get the response you’re looking for, no matter how many times you hit send.  ADHD kids just react when nature calls.  To script or train more socially acceptable reactions takes time and patience under every conceivable scenario.  Time and patience are something our culture seems to be extremely stingy with.

So…I was nearly paralyzed with anxiety over him starting this school year.

I really, really want it to go easier for him this year.

Success for students is measured in academics and social engagement.  ADHD kids also have IEP goals.  And then there are the “incidents” when some major school rule is broken.  My little guy did very well academically last year.  He struggled socially and as a result he had many incidents.  The school tracks every single incident and in some cases has to report them to the state, even if the student has an IEP.  Incidents indicate a lack of self control.

It’s surreal to me that my highest hope for my child is not to perform in the highest percentiles in reading and math, or be Mr. Popular, or an all star athlete.  My greatest hope for 3rd grade is to have zero or near zero incidents.

Why?

Because it means he has figured out how to side step conflicts with his peers.  He’s matured enough to ignore the provocations.  He has the self control to not respond in kind.  It means, frankly a fucking miracle has happened for him.  He wants more than anything to do the right thing, what he knows to do, even in the heat of the moment, when kids are being mean or the circumstances are stressful.  He wants that more than anyone.

Today, 1.5 weeks into the school year, I got that call.  The school ID lit up my phone screen.  I tensed up automatically as my body is now conditioned to do.

Brace your self.

Breathe.

It’ll be okay.

“Hi, this is the SPED teacher.

Um, yeah, so I just wanted to let you know that little man has had an AWESOME week!  It’s been really excellent.  He’s a little worried because he only got a B mark today, but we are super excited about how he’s doing.  We just wanted you to know.”

I thanked him.

I hung up and realized I hadn’t exhaled yet.

My chest was pounding now with joy instead of trepidation.

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Joy, joy, joy….cranes and happy dog…THIS is how I feel right now!

I’m knocking wood all over the place.

Thank you, thank you to all the positive, loving lights who led us through uncertain waters to an island of hope.

xo

The Special Needs Rabbit Hole

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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.

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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.

Back To School – Nervous Mommy

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Little man was all smiles when he found this praying Mantis after school. Praying Mantis is spirit medicine for patience and mindfulness.

Here we come 3rd grade (and 5th, 9th and 11th for the record).  Ready or naught.

Full disclosure – this was written two weeks ago but because of all the “back to school” rigmarole, I didn’t feel it was ready to publish…so, this is a little after the fact but with a how-is-it-going bonus.

While most parents are probably super excited to get their kids back into the classrooms so they can get back to coffee breaks and bankable hours of time to work or play, we are…in total DENIAL, not just dragging our feet, we have barricaded ourselves into the warm banks of summer, praying we have more time to let our interventions take hold.   Terror and panic of all the myriad of factors that could go completely sideways and make this yet another year of emotional rollercoasters and constant management of behaviors.

This is me hugging the warm banks of summer...biting my nails down trying not to think about returning to school...
This is me hugging the warm banks of summer (“please don’t end, please just one more sunset, please…”).

We are not leaving anything to chance, as you know if you have been reading along.  We have spent our ENTIRE summer in THERAPY!  Not for us, but for the kids.  Major neural rebooting, friendship camps and most recently spinal network stimulation, as well as the usual nutritional monkey business trying to eliminate trigger foods, chemicals or just douse the brain in essential acids, minerals and oils…working simultaneously to help the body be lean and the brain happy fatty.

This was the summer to kick ADHD/ADD/Depression/Anxiety to the curb.

Our 10 week summer adventures included:

4 weeks of daily Listening Center therapy in Canada

2 weeks of Friendship Camp for kids with disabilities

2 weeks of Network Spinal Therapy

1 week of windsurf camp

1 week of every other summer celebration or holiday event.

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Such happy Canadian campers….Bon Voyage!

The second half of Listening Therapy in Canada was managed by Dad.  The very minimal reporting I received describe a well oiled machine with marked improvements on the neural feedback testing for all.  The kids said it was all very “boring.”  Passive listening isn’t meant to be exciting but I can tell you from doing it myself that the brain feels like it’s being pulled like taffy in multiple directions.  Paul Madaule said that little man will need a few months to simmer and we can revisit if more sessions would be helpful in December.  He feels our ADD daughter has made great improvements and should have a much easier academic year ahead of her (she feels this way, too).  Our oldest daughter stopped her depression meds and says she feels better than she has in a long time.

This journey finding answers and healing for our variously affected children has opened our minds and hearts to a world we didn’t know existed.  For every ambiguous or discouraging diagnosis, we’ve always found hopeful and promising solutions.  Not every solution has given us immediate relief, though progress has been steady.

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The kids listening at home using the Listening Center’s “LIFT” program.

There is no magic bullet or pill or instant fix for anyone.  The human body is complex.  There are so many factors in our biology and environment that can influence how we experience health or lack of it.  What works for one person or family, may not work for another.  Most exasperating is how few MDs have any kind of training or experience to help guide families. They know how to write prescriptions and shrug off what they cannot bill.  I’ve met very few MDs who desire to think outside the box.  At the end of the day, MDs are trained to commodify health the way a mechanic is trained to tune an engine.  If it’s not obvious nor part of the manual they studied in the wee hours of their debt laden degree process, they probably, honestly have no clue.

What I learned my very first day of motherhood is that WE are our children’s best advocates in all matters.  And that power and responsibility is sacred, if occasionally terrifying.

Everyone keeps asking if the Listening Center “fixed” the kids?  Was it worth it; the time, expense and distance travelled?

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Little dude ready to “fix” himself.

The answer is that we won’t know until we put our kids back in the school environments where they were struggling most.  Our little guy will be improved if he can control his impulses and sustain friendships.  Our ADD daughter will be improved if she can manage her homework without epic meltdowns every night.  Our depression prone daughter will be improved if she can embrace her pivotal year without dropping into a dark funk where nothing seems to matter.

We were really only planning to focus on Listening Center therapy this summer but we recently learned about another technique from some very conservative friends who tend NOT to do anything but traditional mainstream medical treatments.  Their endorsement and further research got us very excited to check it out for our kids and ourselves.  It’s called Network Spinal Analysis.  I will write in detail about this soon but we are super excited about what this technique does for the nervous system.

I got a report from both my husband and my daughter that little man is noticeably calmer since doing several sessions in Canada.  He even offered to help clean up at the Listening Center, where he normally jets out the door the second his listening session is over.

Back to School Update:  Little man’s Sped Teachers BOTH commented on how much calmer he seemed.  Every day so far have been “A” days.

We are cautiously optimistic.

Hoping I can keep my eyes on the prize for my son’s sake as we venture back into the school yard.  For reasons I am still wrestling with, I wasn’t able to write very much about the social bullying we experienced last year (both my son and me)…it still stings…but we are forging ahead and will not let the haters get us down.

The very first day of school, waiting for me to pick him up, little man found a praying mantis in the school yard.  The mantis totem is all about peace, calm and quiet, reminding us to meditate and relax.  They also bring the “invisibility” cloak, to help you blend in and not be noticed.  This is GREAT for little man who was the talk of the school last year and could use a lower profile this year.

xo