Total Pageviews

Sunday, November 1, 2015

I Just Needed A Hand

Grateful to have this essay run on Brain, Child Magazine's blog about the importance of showing compassion for all moms as we struggle.

Writing this piece helped to remind me of the harm done in ignoring or judging other moms, and the incredible opportunity we're often given to lend a hand and show compassion for one another.

Wednesday, September 2, 2015

Back-To-School Means Back-To-Hell For Too Many Kids

Michael H via Getty Images
So happy to have this new piece run on Huffington Post. 

Back-To-School Means Back-To-Hell
For Too Many Kids
It's that time of year again! I gulp my hot tea.

Back to will-my-child-find-a-friend, will-I-get-a-phone-call-from-school, will-my-baby-learn-anything-other-than-how-to-feel-really-shitty-about-himself? Will-my-boy-come-home-wanting-to-die? Yes, it's here. It's back-to-hell time.

Now I sip more quietly, thanking God that I have a handful of days left to ponder this season...

Sunday, August 30, 2015

Dodging The Special Needs Provider Who Might Make Your Child’s Problems WORSE

Copyright Amy Aves Challenger 2014
“He refused to leave the gym. Refused ME,” Ms. D. the special needs camp director said over the phone.

“That must have been so frustrating. I replied. “It sounds like he was shutting down. Probably anxious because…”

“I know lots of kids like him,” she interrupted. “But they still do what I say, no matter how they feel inside.”

“Hm.” I’d been worried about her “no matter how they feel inside” approach all week, but had tried to keep an open mind. I wanted my 9-year-old boy to enjoy a summer camp that understood kids with differences. Eager to find the right place, perhaps I’d convinced myself to overlook this director’s approach. She had demanded a lot of money in advance, for a minimum four-week commitment, with a no refund policy. But after trying countless “mainstream” camps where our son had been miserable, I decided to give this special needs camp a try.

Later my son described the scenario differently than Ms. D. “She pulled the chair out from under me. She yelled at me to leave. I wouldn’t go. It wasn’t fair. They had broken the rules of the game. Then she shoved me, and I started to cry… I was scared.”

“That’s a blatant lie!” Mrs. D. said when my husband and I shared our son’s account of the day. Because Ms. D. became so angry when confronted— we didn’t send our son back for another day of her camp.

Though our son is handsome and tall with smiling blue eyes, he suffers with severe depression. But depression and anxiety in kids doesn’t always look like adults expect. The comprehension and social skills deficits that can cause depression, are problems that often present themselves through defiant behavior. Our boy doesn’t comprehend why he should listen to you when he disagrees with you, why he should (ever) have a negative consequence, why you have changed a plan or a rule without warning him in advance, why he should not always tell you when he thinks that you’re wrong. And when your words reach him, they are all jumbled with emotions and prickly feelings. He becomes overwhelmed. He thinks you hate him.

And so for the last eight years, we’ve been seeking providers to help. We’ve worked with teachers, therapists, doctors, specialists, and integrative practitioners. Here are a few things we’ve learned about choosing providers along the way:

Watch out for the provider who is abrupt with your child, disinterested in your input, all while promoting his or her own expertise. At my first point of contact with a new provider, I need to watch his or her mannerisms, tone of voice and facial expressions. I should analyze his or her questions (or lack of questions) asking myself, how would this person respond when my son shows his most difficult traits? How will this provider interact with me when we have a crisis?

“NO,” my son says too often if he becomes stressed. For the inflexible provider with a one-size-fits-all technique, my son’s anxious behavior can feel overwhelming. And if an (overly confident) specialist feels overwhelmed/incompetent, he or she might strike out at our son, making his behavior worse. By blaming the child, the parent, or another provider, a specialist can disguise his or her own inability to find solutions.

On the flip side, our best therapists and doctors have wanted to observe our son’s most challenging behaviors. The good provider doesn’t shy away, but develops effective treatment solutions only after he or she clearly identifies the underlying conflict. The professional who can help us best collaborates with other providers, and my husband and I, and then helps create cohesive treatment solutions.

Worry about the provider who says he or she can make everything “all better.” Once when our son was six, we went to a social skills teacher named Shana. She’d just started a new social skills “school.” Even with a paraprofessional, his deficits had been causing him to alienate the kids and teachers in kindergarten, so we had taken him out of school permanently. We had begun homeschooling with a private teacher, but still needed a place for him to make friends and practice more healthy ways of socializing. “I’ve got his number,” Shana said.

“What do you mean?” I asked.

“I can fix his ADHD. I know how to make it go away.” She smiled across a picnic table covered with neon binders all organized with emotional regulation tools for each child to study. I fell for it. Her promise sounded heavenly at the time.

She advised me to leave our son with her and a small group of children for a half day, twice weekly, so that she could get to work. She didn’t ask to talk to our son’s therapist or OT who had been working with him for three years. She didn’t ask us what we had already tried at home or with other therapists. And I was too desperate (or too deep in denial) to recognize these warning signs. Shana said she simply knew how to make his problems go away. Looking back, I realize that I was seeking a savior— some magical professional who’d wave a wand, making my child all better.

You might not be surprised to know that Shana’s “method” caused our son’s anxiety to skyrocket— just like Ms. D’s! And when our two therapists requested to meet with her about his increased anxiety, possibly caused by her new intensive services, Shana became angry. She sent us a time-stamped letter stating that our child and our therapists couldn’t return to her school (meaning our child had no way to say goodbye to his new friends.) Then she called Child and Family Services reporting that I was neglecting my children. The county employee visited our home a few days later to see if my kids were being neglected. She said, “I’m so sorry about all of this,” as she tip-toed out of our serene California home. Ironically that CFS woman actually gave me the boost I needed at the time. She observed that I stayed home with my children, full-time, along with a full-time nanny, therapists and multiple teachers helping me. She said, “I can’t imagine what more you could do to help your child.” But still, Shana’s treatment of our 6-year-old was damaging enough to make him retreat to bed depressed, unable to eat for several days. He felt that he had failed. But truly Shana had, and so had I by trusting her.

Doubt the provider who backhands the competition, who doesn’t recognize any resources outside of his or her office, and who throws a diagnosis at your child too quickly. This brings me to the story of the senior Yale psychiatrist I’ll call Dr. McW, a faculty member whom we hired to treat our now nine-year-old son this past year. He immediately told us that everything everyone else had said about our child was probably wrong. According to him, most other psychiatrists were incompetent. He diagnosed our son over the phone, “knowing” him before meeting him or me in person.

Because our boy’s behavior had become unbearable, I was (again) desperate for answers and relieved to hear all of this doctor’s big ideas. But after one visit, this man prescribed a medication for our boy that abruptly caused him to fall into a severe depression, much worse than we had ever experienced. When I called Dr. McW, asking for help, he told me, “I’m concerned that no drug is going to help your child. His problem is simply that he’s an obnoxious twit.” (Before firing Dr. McW, I actually asked him to repeat his statement for me so that I would be sure I wasn’t going completely mad.)

Today we have a psychiatrist who asks my husband and I what we think. She listens, asks more questions, and then makes her recommendations. She admits that she isn’t completely certain what, if any medication will work. She’s smart and humble and we trust her for this reason.

As we have pushed past the difficult providers, I must mention that there have been heroes too along the way. I suppose the worst of providers have trained us to recognize the best. There are the two swim coaches who have ignited our boy’s love for a sport he not only excels in, but where he can finally make lasting friendships. There are the homeschool teachers who worked with us in our home, supporting every aspect of our boy’s struggles and loving him completely along the way. There’s also the faithful nanny who treated all of my children like they were her own beauties, despite some very tough times. Nothing was beneath her if it helped our son and my family, and I’m eternally grateful for her.

Maybe the best lesson learned as we have sought help for our son is that we do indeed have tremendous resources within ourselves as parents. When we acknowledge all of the “knowing” that has come from the thousands of days we’ve spent with our children, we can act confidently as their greatest advocates. We can identify the best people to lead them. We can follow our instincts with confidence, admitting to our mistakes, while helping our children flourish, despite their challenges. Most of us have been privileged to see our child’s greatest gifts since his or her first breath of air. Those gifts have carried us onward. We’ve heard the unique pitch and tone of voice since the first screams. Now we can help our child protect the essence of who they are, polishing it up to shine for the rest of the world to see.

We don’t need degrees. We are parents.

Thursday, July 9, 2015

How One Mom Found Her Way

Washington Post Piece I wrote (and yay! I'm so glad they ran it!) 

Amy Aves Challenger 2014

Sunday, June 7, 2015

Maybe It WAS The Best Day Ever

I tried yesterday. I wanted my kids to say this was the best day ever. But there was the 9-year-old with the mind of a 2-year-old, tantruming before the violin, piano and gymnastics recitals. Hateful words catapulted over the glossy mahogany kitchen counter, objects flew, drowning my hopes, sailing through the air to crash into a new mess.

My two youngest children hid under the desk, like part of a fire drill they had practiced too many times. One needing his cherry violin, all shiny and ready to play. Another dressed in her neon green gymnastics suit, fitted to cartwheel for recital guests. I shuffled them out the door, my fake smile attempting to comfort, smeared with pink lipstick. I quietly pointed to the car, asking my husband to take them away.

Take them to a joyful place where smiling children play songs for grinning parents.

Take them to a jubilant place where hands clap and voices cheer for little bodies.

Take them to a loving place where families hug, where pink and yellow flowers wait.

They left. And I sat with my boy, his mind slowing— finally.  His thoughts landed like a glider descending upon a high meadow, making barely a sound. And together we breathed.

Eventually we rode to the first recital. In the dusty parking lot of the church, we changed his shirt, and gently flattened his hair. We were late, and the old lady at the creaky door looked disapproving.

It didn’t matter. Our family was happy we made it.

His head slumped as he walked down the aisle with hair hanging over his eyes. He sat sideways on the bench all alone, ready to perform. We waited with cameras pointed as his creamy fingers danced across black and white keys, playing jazz notes, all in order, making patterns of sound, making sense of his mind.

Lips curved up and hands smacked together, applauding as he bent forward into an elegant final bow.  

There smiled a boy whose mind could hardly dare leave our house.

There stood a boy whose fingers had just tapped hundreds of notes, sailing through a room, entering stiff ears, painting smiles on still faces. 

There stood a boy, delivering light, pouring hope, for a few minutes, to his mom.

Maybe this really was the best day ever.

Friday, June 5, 2015

Arms Like Mine | Mamalode

A piece I wrote on, a thoughtful parenting blog worth checking out...

"Mama, can I come home? Please? Can you come get me? He was mean to me again today. He told me he's glad I'm leaving this school."The voice of my 9-year-old sounded like it was inside of my ear, echoing through my head..."

  Arms Like Mine | Mamalode

Saturday, May 30, 2015

A Performance To Remember: Love and Acceptance, At Last

Copyright 2014, Amy Aves Challenger
They all lined up. Hands to the side, smiles, glasses, dresses, pants, shiny shoes. Boys and girls on a big, black stage. Ready. Boys and girls who had felt things before that weren’t so nice: Exclusion, shame, bullying, frustration, isolation, sadness, lonlieness, self-hatred, depression, fear. Little hearts lined-up on a stage. Each with a “special need.”

Some had messy, greasy hair and awkward gates.

Some stood sideways, shifting, avoiding eye contact.

Some had pale faces. Uncertain.

Some bounced, fidgeted, twirled fingers, or shifted from side-to-side.

One held his shoulders stiffly at his sides.

Some had clothing that draped awkwardly on the body, too high or too low or too tight.

Some had shirts with a few too many stains from lunchtime.

Some had been given confusing labels by professionals sitting behind big desks. Asperger’s, ADHD, OCD, Anxiety, Sensory Processing Disorder, Autism.

But those little minds and bodies looked healthy there, raised on a platform, higher than us adults for a change. They arced and stood like living flowers, more beautiful than any I had seen before. They revealed the total human, the honest child, the loving soul, up on a stage.

My boy sat in the back, alone, unable to perform. Part of the shadows now. Defiant. Maybe afraid of his own light. I was sad for this, but I was grateful for the hope in front of me.

A tear tried to come, but their faces wrapped me with gratitude that covered the sadness, like a warm blanket, painting a smile larger than the surface of my head. My adult education, criticism, impatience, and walls that divide one fact from another, one type of person from another, one age from another. My adult stuff was buried by their smiles. The openness and truth and hope that these children offered up there, so high— it flooded me.

They were ready to perform for the parents who had suffered with them for thousands of days. The parents whom I love. The parents who had waited for this day.

Then they began to dance and sing. Mouths opened, smiling, celebrating, swinging hips, pointing fingers up to the sky, bellowing words, joyful movements. Music soared.

They were fireworks in red, purple, blue, snapping, clapping, stomping, calling out sounds, words, loving life, finally themselves, at a place, a school that loved them. One year finished. Success at last. Triumphant children, all labels cast aside.

Their parents caught the light, animated, joyful, smiling, whooping, cheering. We all felt it. The glory of boys and girls accepted, sharing their gifts, for all to receive.

I’ll remember their dancing whenever I hurt for my boy, like I do today. I’ll remember the jubilee that waits within each mind, no matter the challenge. I’ll remember the music and the light that will find its way out when we seek the doorways and the hearts to welcome each child home...

Welcome them home to love and acceptance, at last.

Saturday, May 23, 2015

If You Give A Special Needs Boy A Summer Break, He's Going To Need Something to DO

If you give a boy a summer break, he’s going to want something to do with it. At least if he’s a 9-year-old, hyperactive, extremely bright, super sensitive, loving, kind, anxious child. (Anxious because the air hurts, voices echo, faces frighten, social cues make little sense and summer is a big, flaming gap of uncertainty.)

You recall camp experiences from the past and you cringe. (angry coaches, mean teachers, bullies, loud screaming noises, confusing transitions, rushing bodies, new kids every week, expectations set too high, too much activity. Your boy miserable afterwards. Tantrums.)

What will you do this summer?

He’ll ask to sleep in late. You’ll nod your head. Yes. When he finally wakes up, he’ll refuse to shower. He’ll eventually roll out of bed, and ask you for oatmeal with hot purple blueberries.

You’ll give him the oatmeal and he’ll spill the colorful gook all over his sheets, comforter and the hardwood floor. (You served him in bed to avoid a breakfast fight with his sister and brother downstairs.) He’ll leave the bowl on the floor, and then step on it, crunching its blue ceramic under his bare feet on his way out the door. He’ll scream in pain, and you’ll run to get a band aide. You’ll wish you could cleanup the sticky, nasty mess, but you’ll be chasing him down the stairs, asking him to get dressed and put on the band aide. (He’s still in his underpants.)

He’ll see his brother and sister perched quietly beneath the golden morning light that caresses their calm faces. Their nimble fingers string colorful beads at the kitchen table. He’ll find this image disturbing (who can sit and play like that?) and he’ll let out a screech before taking flight. He needs attention. Stimulation. Exercise. Routine. Space. Your chest will tighten. He’ll launch his lanky body at his sister. She’ll scream. He’ll do it again. She’ll scream louder.

The loud noise will cause his hand to reach for the nearest object in site…no, not the carrot juice container! He’ll swing it at her. Whoosh. Bright colorful wetness will splatter all of over the crisp, blue kitchen walls. It will dribble down between the table plank cracks, like an acidic flood over your hopeful morning. His sister will scream again, crying now, as though dying, melting from carrot juice. Her favorite purple dress is dotted with orange stains.

You’ll breathe hard. Your mind will try to empty itself, but instead will think about its feet running down the driveway, along the winding road, sprinting to the shell-covered beach of the Long Island Sound. You’ll imagine swimming through the ticklish water, until you get to the mouth, to the Atlantic. Then you’ll keep going. Paddling your favorite doggy-style stroke, you’ll imagine your picture on headlines “Mom swims across the world, escaping summer vacation.”

Mom! He’ll wake you from your fantasy. He’ll ask you to rollerblade with him, to calm himself. (He has determined that the carrot juice launch was not a calm act.) Though you’re wearing a bathrobe, and you haven’t had your morning tea, you’ll find yourself rolling down your driveway with black wheels protruding from your white fuzz. (You’ll do anything for peace.)You’ll see neighbors’ cars slowing down. You even might see a few fingers protruding from windows. They’re pointing. Your hair is messy, and you flick it aside, but you did wash your face. You smile and wave at the cars. (You've learned to do this.) Your husband will text you, are you rollerblading in your bathrobe? And is our son rollerblading in his underpants? The calm kids inside must have called Dad about this. Tattle-tales.

You can’t reply. You’re determined to get your roller-spin down (it works to entertain your special boy) and, who can text while blading? As you spin, you try to figure out how you’ll do this day, how you’ll keep the peace, how you’ll help your son survive the summer, why everyone cancels everything regular in the summer, why the notion exists that summer break is fun when it makes your kids'  life (and yours) unpredictable. Crazy. Exhausting. The air feels good, and you let yourself get dizzy. You’re a blur. 

Your daughter and middle son lean out the window, calling your name, slowing down the mesmerizing hysteria of your spin. They ask you for a cookie. You stop spinning, and you head toward the house realizing that if you give them a cookie, they’re going to want something, something really spectacularly good this summer, to go with it.

Saturday, May 9, 2015

Happy Mother's MONTH To Those Who Hurt

Happy Mother’s MONTH to you moms with special needs kids. And to you who have challenging kids. Forget that…happy mother’s day to ALL you ladies with kids who hurt.

Because mothering to me is about as beautiful as, well— God. BUT some days mothering is as hard as sweating through an ironman without sleeping the night before (not that I have done that…but I can only imagine.) And sometimes as painful as licking hot sauce after burning your tongue. This I have done.

Mothering hurts.

I know lots of you, and I have read about many of you, who are stuck, who are shut inside without help, who are searching always for ways to make things better for your child, for you, for your family. 

I know about you who are without available spouses, you who cannot find educators to take time for your child, you who cannot find the money to get the next service that somebody said might help your boy or your girl. 

I know about you who are ashamed, you who have tried so many services that you are confused and lost and hopeless. I know about you who are scared, you who need more time for yourselves, you who sometimes want to give up. I know about you who are tired. I know about you who looks at the next mom and the next and thinks that she's doing a better job than you are. I know about you. You are not alone.

Your journey is a good one. Your footprints are deeply imbedded into the earth, into the heart of vulnerable child. Your marks will never be buried. Without them, your special child might not fly. Without you, your child would not be.

So I extend a giant sky-sized hug, and a tremendous upside-down, rainbow smile to each of you moms who feels for your child, fights for your baby, experiences his or her tears that drip deep into your own body. It hurts. It is love. Drink it up knowing that it is good, and that your hurt is not felt alone. Your hurt means that our children are embraced. They are not walking solo.

Our pain, our love, and our endless connection to our babies is the great, great swing that they balance on. They sail through this world, able to smile eventually, climbing to the highs, past the deep places they go because you and you and you and I are here. We are here with them. Always.

I love you moms!