Archives For Sensory Processing Disorder

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Do you hear that?

Come closer.

That’s the sound of my heart breaking.

 

My son has always loved the ocean. His eyes match the sea, changing from blue to green with the swell of the tide. My love for him is an ocean, an overwhelming force which is sometimes calm and steady, and other times full of conflict.

A mother’s love is like the continuous miracle of the sea. It begins in the ocean of your womb – but there is something unsettling about the way your baby kicks. So fiercely you feel bruised on the inside. There is something willful and stubborn about his refusal to come out. He arrives weeks late, and even then – after almost 40 hours of labor.

Your baby is overwhelming and mysterious and brutal, like the ocean. He screams uncontrollably for hours a day, every day. And you bring him to one specialist after another, to be told it’s “colic.” You are advised that only a “tincture of time” will help.

 

Your toddler doesn’t hit milestones, and the pediatrician advises you to seek help. And they unravel the mystery of why your little one tantrums constantly, tears at his clothes, screams at the sound of the blender.

He has “Sensory Processing Disorder” – and you begin your quest to understand the crossed wires of his central nervous system.

You spend your days helping him to make sense of, and feel safer in, his world.

Brushing his body, joint compression exercises, assuaging his need to sink his teeth into everything by giving him chewy tubes, letting him roll on a huge ball, and crash into a mountain of supersized pillows, and jump endlessly on a small trampoline.

 

And at 3, he is now diagnosed with ADHD. And the doctors offer you their prescription pads. And you refuse. How could a 3 year-old articulate to you if medicine was making him uncomfortable?

 

And so consumed are you with his needs, so absolutely drained, that he is 4 years old and you realize another child is out of the question.

You live with that guilt forever.

 

 

A few years go by, and the ocean of his psyche ebbs and flows, in ways you can’t predict or explain; sometimes smooth and peaceful, but often tumultuous, and uncontrollable.

Your child fidgets incessantly. Talks constantly. Makes loud, disturbing noises. Climbs, jumps and crashes constantly. Sucks on clothing, fingers, crayons, anything.

The sun “hurts his head.” If he gets any part of his clothing wet, even slightly, he cries.

He seems to have no body awareness, no sense of spatial relations to other kids. Crashes into other children constantly.

And when playing, gets excited to the point of biting. Never out of aggression, but biting makes him the pariah of playground. You mourn that this gorgeous human being is being sabotaged by some internal trigger switch.

 

You research and find the best pediatric neurological clinic on the East coast, and get on a year-long waiting list.

 

And at 5, after a week of evaluations, it is confirmed. ADHD, Hyperactivity-Impulsive type. In addition to Sensory Processing Disorder. And they offer up their prescription pads, and once again – you say, “No.” So fearful are you of altering his brain chemistry.

Because he is, undeniably BRILLIANT. Creative. Funny. And you are afraid that medication will dull that brilliance. He is the ocean, untamed and magnificent, sometimes raging and destructive.

He is your fierce little warrior. And you are determined to help him flourish, despite his lettered labels.

Another quest begins.

 

Martial arts. Supplements. Structure. Lots of sleep. Cognitive behavioral therapy. Classification. Hellishly difficult diets.

You buy $10 socks for your child. Because he needs “sensitivity socks,” entirely seamless – and even then, an invisible piece of lint will send him into tears.

You spend each morning in an exhausting battle to dress him in clothes he can tolerate – because he cannot wear jeans, or buttons or zippers, or elastic around the sleeves. And no shoes ever feel right.

He can still feel the ghost of the tag you cut off of his shirt, the way an amputee still feels the ghost of a severed limb.

By the time he is dressed and on his way to school, you feel totally defeated.

At 8 am in the morning.

 

You advocate for him tirelessly, through classification and declassification and IEPs and 504s.

The years pass, and some new challenges emerge. When your marriage crumbles, and you are left on your own to deal with this beautiful child, you realize,

YOU CANNOT.

You are so depleted just surviving, you no longer have the energy to deal with his needs – which have grown so pronounced.

The hour of homework, which takes four. Sending him upstairs to shower, only to find him unshowered an hour later, lost in an imaginary world.

The morning dressing battles. His lack of spatial awareness, the constant clumsiness and touching and fidgeting and noises. His lack of social cue awareness, his inflexibility, his fixations.

 

YOU GIVE UP.

You hear yourself tell your friend, “I can’t raise him.

Why can’t he just be normal?”

YES. YOU SAID IT.

Not caring if she or anyone else judges you. For no one could possibly judge you as harshly as you judge yourself.

 

And now, his therapist says, “We must have him evaluated again. I’m fairly certain he has…”

You say it with her.

“ASPERGER’S.”

Because you knew.

 

And you’re drowning now, in an ocean of pain and despair. Unable to face yet another quest to unlock the mystery of this latest diagnosis.

Wondering how you can afford thousands of dollars of tests your insurance doesn’t cover; how you both will survive the nightmare trial and error of endless treatments.

How can you possibly keep him afloat, when you are sinking fast to the bottom of the briny deep?

You look up furiously and demand that God explain why he did this, when all you’ve ever wanted for your child was for him to have a better childhood than yours.

 

And then, you spend the perfect Saturday together. And you are reminded of his brilliance. His humor. You laugh together, all day.

That evening, you both snuggle on the couch. While you write this, his story, he reads.

Every so often, and for no reason at all, he looks up over his enormous library hard copy of War And Peace, just to say,

“I love you, mom. So much.”

 

You may be drowning, but he is not. With his beautiful spirit, endless compassion, soulful heart, keen wit – he is simply adrift.

And you will fight for him, as always. You will figure this out.

Yes. The turbulent waves of your uncertainty sometimes rock with indomitable fury, pushing away, only to crash and break, but he is the shore that grounds you. Your love for him is like the ocean; endless, chaotic, fickle, and profoundly deep.

And there is nothing more beautiful than the way the ocean always returns to embrace the shore.

 

 

Do you have a special needs child? Or know of one?

As a parent, do you sometimes feel like you just can’t go on?
Talk to me. I’m listening.

 

This version of Somewhere Over the Rainbow is sublime.
This is not the official video, but it’s our favorite. Filled with the images of beautiful children.

Mental-Illness 2

 

 

When you have a kid who’s “challenging” (euphemism for “major pain in the ass”), receiving a phone call from his preschool teacher at 8:30 at night is NOT a good thing. You know she’s not calling you at that hour to gush over what a little darling he is.

At 3, my son was defiant, intense, uber-intelligent, willful and aggressive. Hence the phone call from his preschool teacher, asking,

“Is there a problem in your family?”

Mrs. Katz-  in your vast experience educating 3-year-olds, have you never encountered this type of kid? Even the best 3-year-olds make you want to drink in the daytime.

I’m sure it’s hard to be an underpaid, overworked preschool teacher with Little Dude in the room, making his weird-ass noises and destroying furniture and what not. But, lady – this is your JOB.

Did she really think I was going to sigh with relief, and say, “Oh,  YES” and then have a heart to heart with her?

I’d explained, in detail, to the the director of the school that my son had already been diagnosed with ADHD and Sensory Processing Disorder. So, please don’t give me shit about “is there a problem in my family?” We’re FINE.

Or are we?

 

In 1990, I lost my eldest brother, who raised me. My Protector.

My EVERYTHING.

He was the funniest, kindest, gentlest man anyone ever knew, and when he died, I curled up into a little ball and died with him.

I stopped eating and sleeping and when it became apparent I would need hospitalization, my uncle took me to a psychiatrist who treated me for severe depression.

The psychiatrist spent 18 months looking for the right psychotropic cocktail; one that would give me a reason to get out of bed in the morning.

He also articulated for me a childhood of abuse and abandonment that I filled with overachievement and a quest for constant approval. A deep abyss of sadness that I covered with a comic facade and a sharp wit.

Is there a problem in my family?

I have 4 other brothers.

One of them lives in Florida with my mother. He is a brilliant patent attorney who graduated first in his class from NYU Law School. He was the poster child for “the best and the brightest” but somewhere along the way, the delicately constructed wiring inside his brain short-circuited.

He suffers from bipolar disorder which he treats successfully with strong chemical concoctions.

10 years ago, when he decided he no longer needed his medication, he suffered a frightening psychotic break.

He changed personas daily, eventually becoming convinced that he was being persecuted in an elaborate government conspiracy. He decided every member of our family was part of the conspiracy. He threatened us in extended, hostile, middle-of-the-night telephone messages.

Fleeing faceless demons, he drove up and down I-95 at 130 miles per hour, burning out his transmission and enough brain cells to land him in two different psych wards.

His doctors were finally able to help him chemically wrangle his illness into submission. He remembers nothing of his psychotic fracture.

He only remembers that he spent a year afterwards in his bathrobe, watching “The View.”

Is there a problem in my family?

My third oldest brother has a relaxed, likable personality. He laughs easily and makes a fabulous uncle/playmate to my kid.

He is retired military. He was in the army over 20 years and was deployed to Somalia.

He NEVER discusses it. If pressed, he will shrug it off.

When he visits, he pretends to sleep on the fold out couch in my den, but only dozes.

Wakes up. Has a cigarette. A soda. Watches some TV. Dozes again. I hear him downstairs, moving around all night.

The sound of the patio door sliding open, then closing; the refrigerator door opening, the swoosh! of the soda can opening. The sigh when he settles back on the couch. The TV channels changing, changing, changing.

He has been diagnosed with PTSD – post traumatic stress disorder – which is a convenient way for the government to say, “We sent you to war, you saw unspeakable things, and now you’re completely fucked up.”

He toughs it out without meds or therapy.

He’s never been the same.

He has an impenetrable shell of nonchalant behavior, acting normal when nothing is normal.

The man has not slept in 15 years.

Is there a problem in my family?

My youngest brother is a lung cancer survivor. He works too hard, plays too hard, and even after losing a lung, still smokes.

He’s a frustrated musician masquerading as a Vice President at JP Morgan Chase. He’s a confirmed bachelor because he cannot deal with intimacy or relationships.

He has bottled up rage against every single member of my family. His grudges date back to events that transpired over 30 years ago, events no one else remembers.

He’s brilliant, erratic, emotional, fiercely loving, and astonishingly gifted. He can listen to a guitar solo ONCE and duplicate it, note for note. 

All he’s ever wanted to do is play guitar, and somehow he ended up in a corner office, his essence rotting like moldy fruit.

He takes a cornucopia of anti-anxiety medications to cope with a life that crept up on him when he wasn’t looking.

I am certain that his lung cancer was caused not by cigarettes but by the fact that he’s an acutely lonely man who spends all his time alienating those who would love him.

A frustrated artist emotionally eroded by spending the last 22 years at a job that’s killing him.

Is there a problem in my family?

 

Did I bring a child destined to mental illness into this world?

Did I selfishly ignore the familial signs so I could give birth to a child who struggles with heightened emotions and diagnoses full of letters?

He is my child. He is my heart.

I want him to be HAPPY.

 

At night, we cuddle and talk over the day.
“What was your ‘sad’ today? Your ‘glad’ today?”

Our ritual for years. It’s his safe place to open up to me about his world.

But does he?

 

Dear God, I want to know,

Is there a problem in my family?

We walk home from school as he chatters happily about his day.

It’s hard for my 10 year old kid to sit still all day. I like him to blow off steam before he sits down to his homework.

Today, it’s out to the trampoline in my backyard. He loves that trampoline; his sensory issues assuaged by the movement, and all his bottled up energy released.

 

Today I want to talk.

Today, I am writing this, and I am troubled.

Today I need to know that he is having a having a happy childhood.

Today, I want to know,

Is there a problem in my family?

I go out back.

But he’s not talking.

He’s not saying a word.

 

He’s just jumping.

Jumping,

reaching,

arms outstretched,

flying,

so high.

It looks like he’s touching the sky.

Yes. Like this.

Like this.

 

Do you have a child like this? Siblings like mine?
Talk to me. I’m listening.

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mother son

The Boy Who Lives In My House is sitting next to me.

Annoying the hell out of me. Butting into my blogosphere.

“Read me A Clown On Fire!! Does he say “balls” today?

Read me Madame Weebles!! The one where she talks about the Internet.

Read me Jen and Tonic!! The one where she farts in her trainer’s face.

Read me Busted Flip Flops!! The one where she sees the school bully.”

*sigh* They’ll be no writing today.

 

The Boy Who Lives In My House started a blog.  He’s  written one entry:

October 4, 2013.

“I woke up. Had breakfast. Went to school. Had a Spanish test.

At lunch, I told dead baby jokes. Brendan laughed and water came out of his nose. After school, I had my snack.

I did my homework. Mom went to work and Alison took me to karate.

Childhood is a journey, not a race.”

 

The Boy Who Lives in My House is defiant. Argumentative. Inflexible.. Draining.

He talks incessantly. My ears bleed.

I question my abilities as a parent. Am I enough to handle his special needs?

The Boy Who Lives In My House is loving. Loyal. Generous. Joyful.

He is insightful. He is pure.  He believes in the infinite possibility of everything.

 

The Boy Who Lives In My House is the most honest person I know.

A quality I cherish in him. The reason I would rather be around him than most adults.

I have days of indescribable joy with him. Sprawled in the new reclining seats at the movies. Gorging on popcorn and candy.  Then, an arcade. I used to take him down at air hockey – no more. Home, to a long bike ride. Out to dinner. Tuck him in. “I love you infinity, mama.” Bliss.

The Boy Who Lives In My House has no filter. Like Mama, like Son.

His honesty can be of a merciless, take no prisoners, quality.

His favorite way to begin one of his astonishingly honest yet brutal observations is, “No offense, but…

And then he kills me softly with his words.

-Last summer vacation on the beach. I’m in a bikini, insecure as I am, cause what the hell do I go to the gym for ?

“No offense but – your biceps look good, but the back of your legs? They REALLY need some work.”

Well, fuck you very much! When I was pregnant with you, I blew up like Shamu at Sea World! Yeah, I work out, but nothing firms up the connective tissue in my hamstrings, you little shit!

-I tell him I’m the coolest mom around.

No offense, but around here, that’s not saying much.”

Simultaneously slicing me and the spiritual suburban wasteland we live in at the same time. A Double! Such an economy of words!

 

The Boy Who Lives In My House has had to forge friendships all on his own.  He’s done okay. But he’s not fully part of any “besties” clique that he yearns for, the ones that are engineered by the stay at home moms.

I loathe this dynamic. I have failed him in this respect.

But ultimately, The Boy Who Lives In My House will be a better man for this.  He just doesn’t know it yet.

 

The Boy Who Lives In My House is brilliant.  As in, staggering 99th percentile intelligence.

Uses words like “iconoclast” and “obsequious.”

Loves to be quizzed in spelling, on words like “anesthesiologist.”  Which most anesthesiologists can’t spell.

Upon viewing a commercial, demanded to know what “transvaginal mesh failure” was. Tells me, “it’s just another thing you don’t think I’m old enough to handle. Fine. I’ll just look it up on the computer.” He did.

Came home from sleep away camp sporting a black moustache AND blue painted fingernails. Claimed he was a having a “transgender identity crisis.”

The hardest thing about raising a child to be appropriate? When it’s something you’ve never mastered.

 

The boy is frequently inappropriate. Has recently been introduced to Dick Hurtz. Dick Gazinya. Tells me he is growing hair on his ball sack. He is 10 years old.

The Boy Who Lives In My House is hilarious.  Snappy come backs constantly. Where did he learn that from? His humor is often inappropriate.

His dad tells us about a friend who was diagnosed with an inoperable brain tumor. Was given only a year and a half to live.

The Boy Who Lives In My House says,

“Dad, he weighs 350 pounds! He was going to be dead in 6 months anyway! The doctors just gave him an extension.’

And I try  not to laugh; I do! But he is just so damn funny it’s near impossible.

 

The Boy Who Lives In My House is on to me.  Knows that disciplines which take away his possessions and activities are more a punishment for me than him.

I threaten to take away his IPod touch; his Rick Riordan books; computer time. He rolls his eyes and said “Why don’t you take away my flying unicorn, too?”

 

The Boy Who Lives in my House has been diagnosed with lots and lots of letters. ADHD. ODD. SPD. Doctors have been pulling out their prescription pads for him since he was three years old.

But I have not filled them. While a psychotropic cocktail will make him easier to deal with, it may dull his brilliance.  I won’t have it. Not yet.

So I worry – every minute, that The Boy Who Lives In My House will crash and burn.  He has zero coping skills. Low frustration tolerance. A million thoughts bombarding his brain every minute.  He cannot manage them.

I have not figured out the answers. I pray that I will find The Boy Who Lives In My House the right support. That he will grow into a fine young man. I see the signs of it already. He is soulful. Compassionate. Sensitive and kind.

His prodigious love for me, for everyone he loves, is untainted by the pain and rejection that comes with age. His mind is unencumbered by limitations.

As brilliant as he is, he is too young to know that he is this rare and magnificent thing – straightforward and true. And that he is the walking embodiment of innocence.

By the time he understands the meaning of the word “innocence,” he will have lost his.

 

The Boy Who Lives In My House is growing up too fast. Every time we hold hands, I wonder if it will be the last.

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