Howie was on the floor of his room. He was wrapped up in a towel, drying off from the shower.

“Mom. Do I look in sorts?”

“I don’t know. Not really I guess. Maybe a little? Are you?”

“No,” he responded. “I’m a little out of sorts.”

“I could tell. You think it’s because you’re not feeling well?” He had been battling a mystery fever for the past two days. No other symptoms, just a low grade fever.

“No. Not that.” He was looking up – not at my face but just passed me.

I stood over him as he stayed cocooned up on the floor.

“Why do you think you’re out of sorts?”

“Sensory overload,” he replied. His eyes shifted and immediately connected with mine.

“Really. What overloaded you?”

He sighed.

“Life.”

Howie paused for a moment.

“Sometimes that just happens,” he said.  “I need a fidget. Like something rubber. Or a ball.”

He said it in a very quiet, almost nasally voice. It’s the voice I recognize when he’s uncomfortable.

I looked around quickly in his room.

“I found a small Minecraft Creeper figure. Will this do?”

“Yeah.”

He took it from me and smiled.

I took a quick picture of him on the floor with the creeper and showed him his happy face. He stayed on the floor for a few minutes, rubbing his hands over the figure and squeezing it.

I left the room to help Lewis into the shower. When I returned, he was dressed in his pajamas and in bed.

“Can I share the picture I took of you with the creeper to show people how you look when you’re back in sorts?”

He snuggled under the covers and grabbed his weighted stuffed animal.

“No,” he said. “Don’t share it. Can I have a Mom squish?”

I leaned over and squished him tight. Part of his self-advocacy has to be the right of refusal of what I share and what I don’t.

“I won’t share it. I promise. I love you.”

I took my position at the end of his bed. He slid his legs under mine and fell asleep.

**********

I could write about the sheer enormity of that conversation and what it means for him, for me, and for the people in his world. About how much hard work he has done with his teachers and therapists to get here – to not only understand his body but express it in a way that we could understand. I could write about all the signs I missed during the day today that could have told me what he so eloquently did tonight and even though I preach “behavior is communication”, I ignored it all.

I could write that.

But right now I am just listening to him sleep. Soft, even breaths.

The ones that I now recognize come when he’s back “in sorts”.

And I’m just going to stay here a while.

A photo from a different wrapped in a towel day. One that I had permission to share in the past.

A photo from a different wrapped in a towel day. One that I’ve had permission to share in the past.

 Walk with me the diamond road
Tell me every story told
Give me something of your soul
That I can hold onto
I want to wake up to the sound of waves
Crashing on a brand new day
Keep the memory of your face
But wipe the pain away” – 
Diamond Road by Sheryl Crow

A few weeks ago, we got our notice for our annual IEP meeting for Howie.

And just like every other notice we’ve received for the past five years, this one included a one page purple sheet addressed to us as parents:

Please take a few moments to respond to the following questions.  Please return this completed sheet in the enclosed envelope.  Your comments will help the whole team develop an appropriate education program for your child.

1. What concerns do you, the parent (and student fourteen years of age or older) want to see addressed in the student’s educational program?

2. What are the student’s educational strengths, areas of interest, significant personal attributes, and personal accomplishments?

3. What is your vision for your child?  What would you like your child to be able to do within the next 1-3 years?  Beginning at age 14, think about your child’s preferences and interest.  Also think about desired outcomes in adult living, post secondary and working environments.

I’ve always taken these very seriously.  I return them every year with long detailed responses to each question, usually going on to the backside of the paper.  I felt like if they were asking, I was going to answer.

I sat with the sheet in front of me for a while.  I thought about how this whole year we’ve been working with Howie to help him identify his sensory needs and coping skills to help him stay in the classroom when he can, but also know when he can’t be there.  And to know that that’s okay. We’ve talked about him being his best advocate and using his words to explain what he’s thinking and feeling in the moment.  And working with his team to respect that and to really listen to what he’s saying.

For the first question…well I decided the best person to ask was Howie himself.  Waiting until he was fourteen didn’t make any sense.  So I asked him to tell me what was hard for him.  We talked about the times when he gets stressed and what calms him down.  I translated it into five issues we’d like addressed in this year’s program:

1) anxiety and stress in academics addressed through accommodations (specifically during time tests, reading out loud to peers, patience with learning new topics)

2) access to new sensory tools and accommodations for individual/group work (scribe, extended time, ability to type answers)

3) work on social/emotional regulation within the classroom space

4) development of self-advocacy skills

5) implementation of programs to work on rules/consequences and taking responsibility for his action.

My answer to the second question remained pretty consistent from the past five years.  I wrote that he’s very bright – strong in science and math concepts and loves social studies and history.  He loves to read on his own terms and enjoys project time and projects with some structure but without too many constraints.  He likes to feel like he’s the teacher and loves feeling popular in his class.

It was the vision question that made me stop for a very long time.

My vision statement for the past four years was this: We want Howie to show what he could do academically without his behaviors getting in the way.

I read that now and I cringe. I don’t even want to write that here.  But truth is that in the beginning I didn’t know what I know now.  I desperately wanted his teachers and the staff to see the bright incredible boy that I saw.  My concerns – my fears – were that they would never see that he had this incredible brain, a wicked sense of humor, and they would never know that he could read and write and draw just like every other kid in the class. I thought that his “behaviors” would keep him out of the classroom and away from the things that he excelled at. 

I didn’t know what the behaviors meant.  That they weren’t something to extinguish.  That we couldn’t “compliance training” them away.

Now I know.

I know that behavior is communication.  I know that stimming is not only okay, but necessary. I know the importance of learning how sensory and calming strategies work in different situations.  I know to look at my kid as my kid – not a series of antecedents, triggers, and behavior plans.  I know now to respect what he’s doing and listen to what he’s saying because by doing that – that’s how he achieves success.  Academically, socially and emotionally.

He has that success now with his current teacher and aides.  Educators who look at him as an individual and work with his strengths to overcome his challenges.

It was time to put all that into writing.

What is my vision for my child?

We would like Howie to be happy and enjoy school and learning in a classroom environment that meets and supports his needs.  This means helping him become a better self-advocate while creating a program that fits his individual strengths and challenges, with accommodations and supports necessary for academic, social and emotional success.

On Monday, we will sit down with his whole team and write an IEP that does just this. As we write objectives for pragmatics, sensorimotor breaks, and social/emotional growth,  the major thread through it all will be to  help him find ways to feel good and comfortable in his own skin, to feel respected for his differences, to advocate for himself and to – plain and simple – be happy.

That’s how he’ll show them what he can do.

By being himself.

photo(19)See my reflection change
Nothing ever stays the same
But you know the names The Game
We don’t know what it means
Nothing’s ever what it seems
Unforgiven…unforseen

I see the line in the sand
Time to find out, who I am
Looking back to see where I stand
Evolution, Evolution” – Evolution by Motorhead

I went into our local Paper Store to pick up a gift for a friend.

And it was like the universe was trying to tell me something after my last post:

photo(23)

It will be going up on the wall in Howie’s bedroom.  As a reminder for us both.

I love you You love me
We’re a happy family
With a great big hug and a kiss from me to you.
Won’t you say you love me too” – I Love You from Barney

This is a hard one to write.

A few days ago, my friend Jess met me at the sensory gym with her daughter Brooke.  It was the last day of our very long holiday break.  The exact purpose for the gym unfolded before our eyes as Howie and Brooke played together in the gym space while Jess and I talked.

After about 20 minutes of playing and running around, Howie came over to me and climbed into my lap.  Jess took out her phone and snapped a few photos.  She sent them to me later that afternoon:

photo credit: Jess

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(photo credit: Jess)

I spent the rest of that night thinking about those photos.

True confession time?

When I saw that last picture, my stomach hurt.  My heart hurt.

I could only see the sensory seeking in this picture.

His hand in my hair.  Crawling all over me.

The constant requests for squishes.  Asking to “tunnel” : when he puts his hands on my neck and asks me to press down on his hands with the side of my head.  Begging for “snuggles” that aren’t really hugs.  The “mom will sit on my feet” demands.

I saw a dysregulated kid who had been out of school and out of a routine for too long.

I sent Tim this text with the last photo: “Jess captured how I spent all of vacation.”

“Yup.” was the reply back.

The following morning, I changed my personal Facebook profile picture to that last photo.

The comments I got from friends and family ranged from “Love is…” to “That is just precious!” to “So sweet!”

And the one that made me cry: “That’s true love. You being a non-hugger and all – this is ALL love. Beautiful!”

Guilt came flooding in.

Everyone else saw love.  Affection.  Connection.

The emotions I didn’t see.

I get so wrapped up in everything SPD/autism and looking for the meaning and cause of every single action and reaction…

I sometimes miss the beauty and the “normalcy” of these moments.

Of so. many. moments.

Taking him out to shovel the snow is “heavy work”, not just an outside fun activity together.

Swinging high on the swings has a purpose, not play.

A hug isn’t a hug.  It’s a need for deep pressure.

Truth is, I’m the only one he will hug and snuggle with like this.  He refuses all personal touch from his dad and older brother and relatives.  He will squish under blankets and pillows, but skin to skin touch is reserved for me.  Has been since he was born.

Because I know too much, I saw it as a sensory issue for him.

But to everyone else, it’s a loving bond between mother and son.

Cue guilt.

After reading those comments, I clicked on the photo on my phone and looked at it again.

I took a step out of my “autism mom” role and became “Mom”.

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because I needed to look at it again…

In those photos there is the smile.  The calm.  The love.

I can see that’s what Howie sees when he looks at me.

This is our connection.  Our affection.

His safe place.  Where he feels the most at peace.

I see it all.

And I feel at peace now too.

love I get so lost, sometimes
days pass and this emptiness fills my heart
when I want to run away
I drive off in my car
but whichever way I go
I come back to the place you are

all my instincts, they return
and the grand facade, so soon will burn
without a noise, without my pride
I reach out from the inside

in your eyes
the light the heat
in your eyes
I am complete
in your eyes” – In Your Eyes by Peter Gabriel

(Editor’s Note: I was contacted by Fun and Function with an incredible offer: would you like an equipment donation to your nonprofit sensory gym? No strings attached?  The answer was an ABSOLUTELY YES AND THANK YOU! And, well, when someone does something that amazing for you, of course I’m going to write about it.  I’m a blogger and a business owner.  That’s what I do.)

The famous Ghandi quote. On the wall in our office at SenseAbility Gym.

The famous Ghandi quote. On the wall in our office at SenseAbility Gym.

It’s an interesting journey – this special needs parenting gig.

When you get your child’s diagnosis, whatever it might be, initially you can feel quite alone.  You think no one has a kid like mine.  No one will understand the challenges he faces.  No one knows what he’s feeling or what I’m feeling.

And then slowly you find your village.  Maybe it’s in person at the drop off for your child’s special preschool program.  Maybe it’s through a support group.  Maybe it’s online.  At some point, you discover that you are not alone and neither is your child.  There are people out there who “get it” and will do whatever it takes to help you “get it” too.

I’m very lucky to have found my village both in person and online.  I have friends who have helped me when I was lost and friends who understand my children better than I do.  We have a team of support, not just for me but for our whole family.

And it’s because of that support that my friend Tina and I were able to open our sensory gym.  We saw a need and wanted to fill it.  We believed in the fact that all children deserved access to the types of therapeutic equipment used in their schools and their private occupational therapy clinics. We wanted the gym to be a place where parents and children could go to socialize with other families who shared similar challenges. To help them find that village.

As we started the business, we found that there were other businesses out there with a similar goal.

One of these is Fun and Function. It was started by Aviva Weiss, an occupational therapist and a mom of six.  She was frustrated by the lack of fun toys for children with special needs so she began creating her own.  And now she’s on a mission to make “different” play fun.

Just like us.

Her company contacted me recently with this incredible offer: “At Fun and Function we believe that special needs children are awesome, and are always on the prowl to connect with likeminded individuals. We would be honored to make a donation to your SenseAbility Gym and we were wondering if there was something in particular that you might have your eye on.”

Who does that?  Oh right.  Companies started by people who “get it”.

After saying something like “Oh my goodness, thank you!  This is huge and amazing!” I asked if there was a way that I could interview Ms. Weiss for our blog.

I asked her what inspired her to start the business and where the idea came from.  Ms. Weiss answered with a familiar answer – she was inspired right at home, by her daughter.  Her daughter needed the types of equipment for deep pressure and calming, but at the time all she could find were things that were too clinical looking and/or very expensive.  She knew she had to change that and knew that if her daughter needed it, there were other kids out there who would need it as well.

We talked about the challenges she’s faced along the way and what kept her going.  We discussed how hard it is to start your own business, to find the money to do it, to spend your own money to keep things going.  But the mission keeps you going – knowing that you are helping families just like yours.

Every word she said rang true for me.  It was as if she was saying the words in my head – all the reasons why we started SenseAbility Gym were the same, all the challenges were the same, and the driving force is the same.

I asked the question that many people ask us here – is there one thing that could help a child with sensory processing disorder?  If you could recommend one product, what would it be?

She answered with a very familiar answer.  There is no one thing.  Every child is different.  Every child’s needs are different.  And they change.  There is no one sensory “tool” that helps every person.  “I can tell you what our top sellers are.  Things like our weighted compression vests are very popular and have been from the start,” she said.  “But not every child needs every item on this list.  It’s why we created the ‘Find Your Solution‘ filter at the bottom of our website.  Parents, caregivers, teachers and adults can enter in their age, budget and need and we’ll help them find the best products for them at the right price.”

I asked her what those favorite items were and what were best sellers from the website.  She suggested their weighted compression vest, the Soft Saddle Scooter, Sammy the Seal Swing, Social Emotion and Guess How I Feel Games, Squishy Gel CushionsCool Chews and Bite Bands.

Here at SenseAbility Gym, we’re in love with the Air Lite Junior Bolster Swing.  Generously donated to us by Fun and Function.

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Ms. Weiss and I talked for about 15 minutes until I asked the question that I ask many parents who have older children.  What advice do you have for families who are just starting out on this journey?

Her answer was the best.  Don’t let anyone tell you how to feel or what your child won’t be able to do. It’s okay to grieve and be angry.  But then it’s time to get back to figuring out with your child what they need and what can help them.  Then anything is possible.

Anything is possible.  And when you believe in your child and yourself there isn’t anything they – and you – can’t do.

Like start your own business.  Or your build own community.

I am so grateful to Aviva Weiss and people like her who have blazed the trail for parents like me.

All it takes is an idea and the will to do it.

She found her will by looking at her daughter.

I found it by looking into these eyes here.

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Build it and they will come.

I had a lot of good intentions
Sit around for fifty years and then collect a pension,
Started seeing the road to hell and just where it starts.
But my life is more than a vision
The sweetest part is acting after making a decision
I started seeing the whole as a sum of its parts.
My life is part of the global life
I’d found myself becoming more immobile
When I’d think a little girl in the world can’t do anything.
A distant nation my community
A street person my responsibility
If I have a care in the world I have a gift to bring.” – Hammer and Nail by Indigo Girls

It was just an ordinary conversation.

Howie and I were in the car.  It was just the two of us, on our way home from working at the sensory gym.  As is our usual routine, Tim picked up the other two boys and took them home for dinner and Howie stayed with me to finish his homework and play.

While driving, I started talking about the new skating rink that opened up in our town and asked him if he thought he’d like to take lessons.

“Oh yes!” he said excitedly.

“They have special lesson times set aside for kids with sensory issues.  Do you think you’d like that?”

We haven’t had the whole “autism” talk yet.  Or the partial talk.  Or whatever it will end up being.  For now, we’re at “sensory issues”.  Because for Howie, that’s the most tangible and easiest for him to understand, both at school and home.

“Yes.  That sounds good.”

There was a pause.

“Hey Mom.  Are there some kids who don’t have sensory needs?”

I took a minute to gather my thoughts.

“Well, I think everyone has some things that bother their senses.  Some people have learned to work through it so it doesn’t bother them as much as others.  I’m sure there are kids in your class that have sensory issues that really bother them and some that do not.”

I looked in the rearview mirror and I could see him trying to process that.

“Do grownups have sensory issues?”

“Yes, absolutely.  I do.”

“You do?”  You could hear the surprise in his voice.

“Yup.  I am not a fan of socks, for example.  And I really hate any clothing touching my neck.  Like scarves.  Or turtlenecks. But a lot of times, grownups learn what makes their senses unhappy so they don’t get into the situations that make them uncomfortable.”

“What’s a turtleneck?”

I explained what it was, realizing that no one in our family wears anything like that.

“Hmmm.  I think I would like a turtleneck. My neck gets very cold all the time.  Do you think you could buy me one?”

It took me a minute to figure out that I had projected many of my own sensory issues on my kids.  No turtlenecks or scarves.  No wool or chenille. When I cook, it’s bland.  I never really stopped to think if my kids needed scarves or liked spicy food or could touch a cotton ball.

“Well sure, you can have a turtleneck.  I’ll get you one and you can see if you like it.”

“Can I have earmuffs too?  My ears get really cold.”

I cringed at the thought of anything on my ears.  “Of course.  Ear muffs too.”

“Mom. Do you have any other sensory issues?”

One glance in the mirror and I knew he was completely engaged in this conversation.  More so than any other conversation this week.  He had been so…off these days.  A lot of stimming.  Difficulty focusing.  Engine running at full speed.

I knew I had this one time now, in the car, to connect.

“I do,” I said.  “I really hate big stores.  Like Wal-Mart.  I get very uncomfortable in them.  I feel like my skin is moving and I get very fidgety.  So as a grownup, I have learned not to go into stores like Wal-Mart.”

Another pause.  And then…

“I think I figured it out, Mom.  I think you’re afraid that you’ll get lost in there.”

I breathed in a bit.  I had never thought about it like that.  Big store, short person.  My claustrophobia and fear of not being able to get out.  It’s why I avoid haunted houses, corn mazes, and apparently, big box stores.

“You know Howie, I think you’re right.  I think I am worried that I won’t find my way out.”

It got very quiet in the back of the car.

I figured I had lost him.  Another glance in the mirror and I could see he was staring out the window into the dark.

“Mom, can we go to Wal-Mart some time? Just you and me?”

I gulped, wondering where this was going.  “Why?”

“Can we go there and not buy anything?  Is that legal?”

I laughed.  “Yes, of course it’s legal.  It’s window shopping, remember?”

I took a moment.  “But why do you want to go to Wal-Mart?”

“I want to go with you.  It’s time to face your fears.”

Face Your Fears.  Said with emphasis.  Like a coach. 

Or a super hero.

My eyes welled up.  “You would do that with me?”

“I would.   I would say ‘It’s just a huge store.'”

I had stopped at a light.  I turned around to face him.

His grin lit up the car.

“Thank you sweetie. I would really like that.  You’d do that for me?”

“I would.”

We pulled into our driveway.  I helped him out of the car and gathered up all of our stuff.

“I really appreciate that you would help me face my fears,” I said.  “Do you have any fears that I could help you with?

Without skipping a beat he said “Nope.  I am not afraid of anything.”

And he went into the house.

An ordinary conversation turned extraordinary.

My hero.

photo(18)

Watch out, Wal-Mart.  Here we come.

Just a day job that’s someone’s gotta do
It’s kinda hard when everyone looks up to you
Try to make it look easy, gonna make it look good
Like anybody would

I’m just your average ordinary everyday superhero
Trying to save the world, but never really sure
I’m just your average ordinary everyday superhero
Nothing more than that, that’s all I really am” – Everyday Superhero by Smash Mouth

My son’s sensory issues are well documented here.

But what about my own?

I’m exploring that at the SPD Blogger Network today.  Come over and read: Say You, Say Me.

And while you’re there, click around.  There are some amazing essays and great do-it-yourself projects to check out.  And maybe you’ll find a moment to write something too?  (I am the editor there…I have some pull…)

Click HERE for the SPD Blogger Network.

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