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.

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.

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

Camp Friendship

IMG_2166Got back from Toronto and it was clear that while seeds may have been planted, it would take time for them to sprout.   I did not plan any camps for the children given our unusual summer schedule with two weeks in Canada at either end.  I wanted to see how things would go and give them a chance to relax and chill out.

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However, there is not much chillin’ for an energetic, impulsive boy so I found myself fantasizing about day camps.

Summer and camp go together like ice and cream, or hip and hop.  However many kids like camp, most parents love it.  It’s something you grow up dreading but reflect on fondly when adult life torches the sweet and gentle wick of childhood.  While parents enjoy their children’s camp song performances and ghost story recaps, they really appreciate a week or two of exhausted kids at home or away.  In any case, tired kids make happy parents.

Last summer, camp was a nightmare for our family.  We didn’t yet have the full ADHD diagnosis/IEP/guidance/understanding we have now.  So, naturally, we assumed that despite our unpredictable energizer bunny, a little coaching and some kind counselors would grease the wheels and he would “figure things out.”  After all, he said he wanted to go…in fact, was dying to go to camp.

Turns out, camps of all kinds can be extremely challenging for kids with ADHD.  As with your typical schools, counselors are barely beyond their teen years and most have no experience or framework to understand the behavioral needs of kids wired to move, interface, react, and explore.  Sprinkle in clever, impulsive, extroverted, and sensory craving and you have a recipe for conflict.

IMG_2128We tried two different camps for our little guy.  One was a day camp.  It was rocky but he made it through with me literally coaching the counselors about what to do when he would resist, hide, refuse to listen to the rules or follow them, or have other attention seeking outbursts.  His only saving grace was the head counselor had worked in special ed and felt she understood ADHD kids (she barely had more of a clue than me) so she went to bat for him a number of times.  But the 16-17 year old counselors really didn’t care.  They were not getting paid to figure out what was eating a 7 year old prancing about like a brat.

The second camp was an overnight camp and in retrospect, WHAT THE HELL WAS I THINKING?  I relented to his pleas to go because it has been a tradition in our family and he watched his sisters go every year and really believed he could do it.  Well.  No.  We got a call the second night to come get him.  He was not jiving with his cabin or his main counselor.  Ironically, I had just received camp photos that day and he had a big smile on his face.  His counselor looked like a 70s porn star on dope, but otherwise, I think camp felt like surfing a barn door down Maverick waves to a little boy without an executive function control panel.

Summer camp would have to wait. At least summer camp as we all know and love it.  Unless….

I heard there were camps for kids with ADHD.  I heard these camps often changed these kids lives, helping boost their self esteem, social skills and emotional intelligence.  Could such a thing actually exist?  Surely not anywhere near me? I did a quick online search (I boycott the “g” word as a verb) and low and behold…this is NOT a fantasy concept.  There ARE camps for these kids and they’re not all in New England.  I couldn’t believe that there was one close enough to touch.  It would be too far to drive him every day but my mom lives closer…Dare I imagine my little guy going to summer camp and not getting notes or calls every single day about events I could do nothing about?

YES!

I found Camp Yakety Yak, a place where kids learn about friendship and are fully supported in some amazing experiences and skill building by highly trained and compassionate specialists and volunteers.  The founder started the camp for her own son with ADHD because their experiences had been much like ours.  It’s tough for our kids to learn important skills when they can’t even get past the starting gate with neural typical kids and adults.  Miss A designed camp Yakety Yak to fully accommodate the learning and behavioral needs of a diverse camper community and invite siblings and neural typical peers to join the party for their own unique experiences in building compassion and helping others.  The more I read about the camp and the program the more excited I felt!  This could be exactly the kind of positive support little guy needed right after all the neural stimulation he just received in Toronto!

IMG_2127The camp dates worked perfectly.  My mom was willing to host little guy and his sister.  They have been going to dinner, movies and parks every evening, making this day camp experience a more homey overnight camp, too.  Best of all worlds.

I am writing this just days before camp ends.  The two week camp is designed to build upon each day’s “classes”, working on individual goals each camper has based on their IEPs or other requests from their families.  Daily progress reports go home to tell caregivers and parents all kinds of things about how their camper did.

Last week little guy learned a whole new system of reading his own and others’ emotions and strategies for how to respond to both.  He also learned that his sensory sand can be and often is a distraction to him and others and that “fidgets” are not meant to be used that way.  He was offered alternatives from their on-staff OT (occupational therapist) which seemed to be working.  He has grown very obsessive with his sand box.  It has been a huge source of frustration for school and home (and the TSA) but it’s better than an ipad and honestly…pick your battles…getting him to stick out an entire day at school, or even go in to the school building, seems like a more important goal than sand vs putty vs velcro under the table…sand proved to be the most reliable way to keep him engaged and present.  But, I will be very, very happy if Camp Yakety Yak staff have nudged him into a new, less obtrusive habit…very happy.

camp yakety yakMy 10 year old is there as a neural typical sibling.  She doesn’t know it but I asked the camp to support her in expressing her frustrations having a brother who demands so much time and attention from the family as well as learning to stand up for herself.  From what I understand, she is making some great friends.  This weekend when they were home, she said that it is helpful to see that she is not the only sister or sibling with a “crazy” brother.  Sometimes, just knowing you’re not alone is very helpful.  Camp Yakety Yak has counselors on staff who specialize in therapy and helping siblings cope with difficult feelings, too.

Little guy also earned the chance to MC a talent show, which he did with tremendous flare and enthusiasm. One of the camp founders who had been working with him on the sand and staying engaged in group work was all teary eyed showing me her video of him standing in front of the entire camp announcing “Annnnnndd next UP is Dannnnnnnyyyy with his toothless whistle!”

The camp puts on a show on the last day for parents.  I’m hoping I get to see some of this little showman’s sparkle Friday.

IMG_2019What have I been doing while my youngest two are away?  Cleaning of course.  I’ve been organizing closets, drawers, cabinets, garages.  Completely obscure projects and feeling nostalgic about handprints, mini me dolls, old doll houses, giant stuffed polar bears, and dragons.


My oldest daughter is now old enough to spend her summers away.  This dragon was hers, less than 10 years ago.  It was on my list to clean or paint over for years and I never had the chance to get to it.  As I started to clean it off with one of those miracle pad things, I was floored by grief over her fading childhood.  In so many ways, this dragon scrawled into the wall was all that was left.  Despite the fact that we are trying to sell this house, and that having a child’s scribble on the wall is not exactly appealing to buyers, I wanted to keep that dragon there forever.  I took a photo instead.

IMG_2072I took a break from my cleaning frenzy to sit on the lawn in the sun, drying my tear stained cheeks when an enormous black and blue stripped dragonfly hovered right above me.  We always have dragonflies in our yard.  This one was new.  And huge.  And I immediately felt that it was her dragon come to life.  I hadn’t erased him.  I had freed him from two dimensions.  It was like the magic of childhood and her dragon were not gone, they were transformed, born inside of her and now buzzing in the world.  Life is transformation.  Life is change.  Yes, hold on to these moments and cherish them.  They are sweet and fleeting.  But the magic never dies.  It just transforms.

I hope that in writing about our journey with our son and all the heart wrenching experiences and hopeful discoveries that hope is freed from the two dimensions of this screen and comes alive in your heart, dear reader.

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xo

Signs and Hope

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We made it.  Two weeks, 15 listening sessions, teenagers sharing a bed, subways, urban sights, high energy streets and adapting to changing tempos and routines.  What an adventure!  While I don’t see any radical changes in any of the children, I sense that powerful seeds have been planted.

I sat down with Paul Madaule yesterday after the children retested on their “listening” ranges.  He said that changes typically begin in younger brains faster and for some reasons girls have a more rigid structure in how they think.  So, bottom line, between two “older” girls and a tough nut boy, we will have to be patient and really pay attention to their behavior patterns and moods over the next several months.

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E has been coming off depression meds over the past two weeks.  She had horrendous migraines for several days requiring ibuprophen.  The past week she hasn’t had any headaches but she has been cranky.  She also also had PMS during this stay.  Double whammy if there ever is one.  She’s also keeping a terrible sleep schedule, staying up after midnight each night watching comedy on netflix or chatting with her friends.  We had a talk about how much sleep the brain and body require and she has convinced herself that she can function on 3 hours of sleep if necessary.  Her stubborn and invincible delusions are still in place.

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I did see a little crack of light talking to her about neural behavioral reinforcements and how important it is to interrupt negative patterns, not with force or negative feedback, but with NO feedback.  In the case of her brother, when he’s being particularly annoying or negative, the correct response, the response that will eventually help him most, is to ignore him.  With an ADHD brain, negative responses only reinforce the negative behaviors because it is stimulating and exciting to the brain to get a response.  While it feels counter intuitive, no response, taking a breath, walking away, is actually the perfect way to allow the dysfunctional neural trail to overgrow with healthy forest and reroute to a better path with positive encouragement…It’s subtle but powerful.

C showed the most improvements on her retest.  Her mood has been the most consistent over the past two weeks despite constant bickering with her sister.  Because of her experiences at Brain Balance with her brother, she is generally more tolerant and understanding of him.  She did have a rather huge milestone hit in the past few days that I won’t mention here but let’s just say, my baby is growing up.

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Little man’s seeds will probably need a while to take hold.  He still has trouble with surprises.  Today we forgot his sensory sand box in his backpack at the apartment.  I thought about bringing it but I didn’t think he used it during his listening sessions and he was occupied on the drive with his ipad.  Once we arrived he announced he wasn’t going in today.  And then when he heard he didn’t have his sand he became very angry and started to cry.  He blamed me for forgetting it.  I didn’t engage his anger.  I just waited quietly.  He said he was never coming back.  I sighed and walked into the center without him.  As I was explaining that he didn’t want to come in, he crept inside and sat in a huff by the front door.  There was another family and a dad sitting in the waiting area watching the scene.  I felt my face getting hot.  My achilles heel is never wanting to draw attention to myself.  Having this extroverted fireball for a son, I’ve had to walk into that fire over and over and over.

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Despite his persistent difficult personality, I have noticed some positive changes in little man.  At the pool, he was more responsive and willing to listen to my suggestions, both as a swimmer and in how he respected the boundaries of others.  He is still fairly unable or unwilling to read body language, but he seems to be slowly recognizing signs and honoring them.  Paul said that the number one recommendation for him is regular rigorous exercise.  He really needs a way to discharge all the energy in his brain and body.  We will definitely continue swimming though I’m not sure how he would do on a team or in a class just yet.

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His default response switch is set to “No” so we need to gently nudge that to “Maybe” by encouraging him to stop and think before responding and educating those who work with him to not react too strongly to his “No.”  He and everyone in his world need to allow the “No” to blow on by like a storm cloud and wait for the opening of “Maybe.”  This is subtle brain rewiring through cognitive behavior training and it requires the whole family and anyone interacting with him on a regular basis to fully understand.

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On Sunday we went exploring in Toronto and found Graffiti Alley on Queen and Portland Avenue.  It was unusually stormy and rainy so we were grateful to have the car.

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Happy to find a little Bowie in TO.

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In Graffiti Alley I found a lovely little garden.  There is always hope.  All you need is a tiny crack for the seedlings to emerge.  Felt like a poignant metaphor for our journey here.  The Listening Centre is like the gardeners who planted this little corner of Toronto.  Planting seeds of hope.  Transforming.  Life.

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On Saturday, the stormiest day, we were hoping to go to Ripley’s Aquarium after the Listening Centre but a Blue Jays game just let out in the middle of a torrential downpour and hundreds and hundreds of fans ran for cover and lined up at the Aquarium.  We detoured to SOCO at the Delta Hotel for some lunch and later caught a movie instead.

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Had to get an umbrella and a sweatshirt on Saturday as the storm caught us off guard.  The umbrella lasted about an hour in the winds.

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Here is proof that they do get along sometimes.

 

Links:

The Listening Cure

Words Can Change Your Brain

Weight of Worry

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Louise made me cry. I didn’t realize how close to the surface despair had been lingering. A kind gesture, a hug, an empathic word unsteadied my grip on the wheel of an impossible journey.  It’s not that I haven’t cried oceans of tears over the past three years, or longer if you count the various heartaches of pregnancy and the NICU.  The weight of worry and sorrow stretched my ducts so deeply I figured I had room for something bigger than simple kindness.

I’m supposed to know what’s wrong and how to fix it. I am supposed to know what to do. I don’t. I haven’t. I lost my pride a long time ago.

I cling to the possibility that all of these ledges are steps and not cliffs. We will make it. All of my sweet babies. They are just going through the necessary dark and gnarly soil of maturation, I tell myself.  Our expectations of normalcy may be part of the problem, right? The intransigent issue of slow flow, jumbled processing, asynchronous development, all to be worked out in time and experiences. If we just relax and continue to set boundaries and love them fiercely, they’ll rise into the lovely humans we’ve seen in their first brave gasps of life.

But doubts haunt the shadows, tapping on us when we are 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. Sometimes I notice the stinging, jagged tears along my skin and limbs.  I’m even startled to see my own face, a familiar but forgotten stranger, from the time before.  The battles don’t seem like battles until I dare to rest.  Then I fear I won’t have the strength to get up again.

I pray each night to always get up again.  To protect my babies as long as they need me.

I’m so grateful for the staff at The Listening Center.  They really do get it.  Very few others get it.  I hope to get a better photo of them all before we leave.  And maybe kidnap one of them to keep as my personal coach and cheerleader.

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Wednesday we spent the morning closer to downtown discovering Toronto’s “Hogwarts” and the Royal Ontario Museum (ROM).

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Little man was so excited to see Trinity College, with it’s grand inner courtyard and dining hall where he could easily imagine Dumbledore, Harry, Ron and Hermione all seated at their respective tables and houses.  The school is open to the public so he was thrilled to get to run around and explore with relative abandon.

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His sisters were annoyed we were not headed to the ROM first, they scorned the whole experience and kept yelling at him to “stop.”  They sneered that it wasn’t really Hogwarts.  I swear, they have known not to spoil Santa, so why not let him have this?  This dynamic where they insist whatever he’s doing is wrong or annoying, and I insist they mind their own business, is getting really old.  E’s reasons for being constantly annoyed at him are never ending grudges (he really can’t win).  C’s reasons were more personal as she has planter fasciitis and cannot walk very far before she experiences excruciating pain….So…with this constant dynamic, he naturally clings to me as his safe place.  They seem to resent him for it.

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The ROM is right next door to Trinity and the Royal Conservatory of Music.  The modern protrusions and angles feel like Superman’s crystal lair or a glass iceberg jutting out of the cement.  The interior is more what one would expect in natural history museum.  It felt like Ben Stiller might be there at the Security Counter.

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Little man poses here with Futalognkosaurus, a massive dinosaur named in 2007 and the largest dinosaur cast displayed in Canada.

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His favorite area of the museum was the Asia wing.  He wanted his photo taken with everything.  I will just share one.  He loved the warrior masks, the Ming tomb and the Chinese Buddhist temple.  I love traveling in Asia.  I think I may have a new travel mate.

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The girls wandered ROM on their own and upon reunion grumbled about being hot and tired.  We caught the St. George subway to Bloor and Bathurst.

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C is a big graphic novel fan.  We “had” to go back to Little Island Comics and get the remaining “Cucumber Quest” series books by a Canadian Gigi D.G.

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Later I took my MIL to dinner at Coppi on Yonge Street in the Lawrence Park area.  It was highly rated for “authentic Italian fare.”  My MIL lived in Rome for many years so I thought she might enjoy celebrating her name day there.  The risotto fungi was spectacular!  They scooped it out of a giant block of parmesan cheese before plating.  The salted fish dish looks pretty amazing as well.  Highly recommend this for anyone visiting Toronto.

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Each day has highs and lows.  Though living in smaller quarters with unusual routines is taxing to be sure, there are small signs of progress.  Though E looked (and acted) like death warmed over, a long nap during her session at the Listening Center seemed to soothe her.  She is tittering off her depression meds, though faster than we had planned because she forgot her remaining pills back home.  I realized today that she may be having a harder time than she or we realized.  Will keep an eye on that.  C was in better spirits today and was able to find a seat on the rush hour train where standing 30 minutes has been a special kind of torture on the way home.

As soon as I arrived to fetch the children this afternoon, Louise leapt to tell me that little man was unusually quiet today.  Normally he’s very active and loud, bouncing around with his headphones bopping on his head.  I wondered if it was the swimming?  He swam quite hard and very synchronized this morning.  He really seemed to enjoy doing laps.  None of the girls ever did.  He took my suggestions to improve his strokes, differentiate his kicking and even wanted to time his laps.  This kind of physical coordination is extremely complicated for the brain to manage if there is trouble with the communication anywhere.  This is also the second time water seems to be a factor in calming him in subsequent activities.

Seeing some light on the horizon…

xo

Sibling Challenges

IMG_1637I really want to explain what this whole “listening” stuff is about to those following along.  But before I attempt to get into that, some full disclosure.

Travel is hard.  Travel with kids is harder.  Travel with siblings is hell.  Stir in some foreign therapy in a new place with new people and you have a wonderful recipe for daily battles, tears, and bitter grievances.

Yesterday.  Sigh.  Where to start. It began with a progress report with Paul Madaule and ended with a fight.

Paul met with each of the children and then me.  He said that E seemed to be a completely different space than when he met her a week ago.  She seemed poised and animated, speaking excitedly about dressage and her interest in competing at the junior olympics.  He said he is focusing on this goal with her though the therapy will help her across the board.  He has worked with olympic level athletes many times.  Listening therapy helps with balance, flexibility, grace, movement and timing.  All qualities she will need to go to as far as she hopes.

He was also very impressed with C’s artistic ability.  He is an artist himself so he recognized her talent immediately.  He feels the animated short film project she and I started will be very important for her, to give her a boost in confidence and reinforce the skills she needs in prioritizing and organizing to accomplish a goal.  He seemed to feel her progress is on target.

Little man seems to challenge him somewhat.  He believes this will help him but is unsure if it will tone down the impulsivity and the learned tactic of diversion and avoidance.  He feels that we will need to increase the boundaries reasonably and provide adequate outlets to stimulate his vestibular system.  He loved the story of the waterfall and how it seemed to calm little man at Niagara and then led to a very organized and rhythmic improv drum session.  His main recommendations for him during the month long break in July are trampoline, pump track biking or biking that has significant safe impacts on the body, learning to play the drums or bongos and getting a big brother to be rough with in a positive way.  He agrees that his sisters are not such a great influence for him right now.

On our ride home (took the car yesterday), the girls unloaded ALL their grievances about little man on me, in front of him.  He sat quietly taking it in as he usually does.  He’s a brat.  He’s manipulating you.  He’s a liar.  If he was a horse, we’d sell him.  He’s never going to get better.  It’s your fault.

Note:  It was less than 20 years ago autism was blamed on “cold mothering.”  So, this notion of blaming the parents or parenting or lack thereof, is still with us.  And tragically, it’s within my family as well.

I am a failure.  But not for the reasons they think.  I’ve clearly failed to educate them on what exactly is happening in their brother’s body and brain and why he has an IEP and several doctored professionals looking after his care.  I’ve failed to instill compassion and understanding that bad behavior is typically because of bad feelings.  Bad feelings can be caused by invisible experiences like sensory overload, misfiring synapses, audio/visual confusion, implicit or explicit bullying, frustration with lack of ability, and on and on…And what really kills me, is that both of them have their own issues.  One would think that having even a minor learning or functional challenge would lend one to greater compassion for others facing even greater challenges.

Nope.  Zero compassion for the brother that barges into their rooms, rifles through their stuff (sometimes) and violates the same house rules they violate.  He’s just a “pest.”  Isn’t that what many siblings say about younger siblings?  If their negative words and attitudes towards him weren’t so detrimental I would let it go.  Unfortunately, he hears every single negative word and it hurts him.  It also seems to give him permission (in his own mind) to act out towards them which creates a vicious cycle.  I’ve begged and pleaded with them to think about how it must feel to hear your older siblings dumping on you every day.  It seems to be easier to scape goat him.

“You get what you get and you don’t get upset.” This was the kindergarten mantra at the school my girls attended in the big city not that long ago.  I guess that mantra doesn’t stick.  And neither does healthy eating, but that’s a topic for another blog on teenagers.

In an attempt to soothe the troubled waters so we can survive another week on aero beds, I took the kids to some cool little shops near the Listening Center.  Midoco is an art supply store that had a collection of necessities and oddities to perk them up nicely.

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Paul recommended Bite and Sip for fresh whole food smoothies.  Not sure the gluten heavy pretzels are great but they are also fresh and hand made.  We watched the older slavic owner making them as we waited.

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After their sessions we headed over to the Green Beanery for a quick snack and then to Little Island Comics, a bookstore for ages 5-15 and up.  C and Little Man were enthralled.  Little Man is obsessed with the Avatar series so he was thrilled to see the books there.

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In fact, he was so excited he literally could not put the books down.  This was the first time he didn’t want to sit and wave at the subway conductor as he (typically) breezed in through the tunnel.

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I was also happy to see the three getting along for a change…if passively.

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Tomorrow we are hoping to get up early enough to make it to the Royal Museum.  It will be a minor miracle to get teenagers up before 8 am.  Wish me luck.

xo

PS:  Great article “Rewired:  Learning to Tame A Noisy Brain”