sensory processing disorder


Note: As I wrote in part one, I asked Howie if I could share this story (and parts one and three) here.  I told him that I had a blog and that I liked to write about things that happen in our lives on it.  His response?  “Sure.  You can share this with the blogosphere.”  Well, okay then.

Second note:  While this is part two, the story actually happened first – before part one.  But it took me a long time to get the words together for this part of the story.  I am hoping the order makes sense some day.

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It was a Sunday morning a few weeks ago.  Howie and I were headed out.  It’s a work day for me and it’s our Sunday tradition that he comes with me.

He stopped short in the garage and said “Hey!  That’s not right!”

I turned to see what he was looking at.  It was his snow shovel.  On it there’s a picture of a snowman saying “Brrr!” and he’s surrounded by four drawings of snowflakes.

“What do you mean?” I asked.

“All the snowflakes on that shovel are exactly the same.  That’s not right.  Every snowflake is different.”

“That’s true,” I said.  I looked over at the shovel.  “I would have never seen that.”

“I notice stuff like that.” he said.

I opened up the car door and helped him buckle his seat belt.  He’s getting faster at doing it himself, but when he’s thinking of other things the motor planning involved with buckling just doesn’t come as easily.

“Yes, you do notice stuff like that,” I said. “You always have.  You have a brain that sees things that others don’t.”

“I know,” he said.  And he named other things he notices.  Details on letters with different fonts.  Things that are just slightly out of place.

I pulled out of the driveway while he was talking.

“Does that make me a mutant?” he asked.

“What? No!”

I looked at his face in the rear view mirror as he looked a little crestfallen. Ah, like the X-Men…we’re in superhero mode again.

“You aren’t the only one in the world with that kind of brain.  But most people don’t.”

Smiles from the back seat.

I realized that this was the time.

I have spent the days since that moment we got Howie’s autism diagnosis in December 2009 wondering how I would talk to Howie about his autism.  I rehearsed it in my head many times.  Bought books.  Read blog posts.  Wanted to make sure I did it “right”.

We stopped at a light.

“So…” I said.  “That ability is a gift.”

“It is?”

“Yes.  You know what I mean by ‘gift’, right?  Not like a birthday party gift but more like a talent.  Something special you have.”

“I know! What is it? What’s it called?”

“It’s called autism.”

“So I have autism?”

“Yes.”

“Hmmmm.”

I decided to push it a little bit more.

“Hey, you know who else has a gift for seeing stuff like that?”

“Who?” he asked.

“Your friend Brooke.”

“Brooke has autism?”

AND THE BIGGEST SMILE FILLED UP MY REAR VIEW MIRROR.

I left the words hanging there for a moment as I turn into the parking lot for the sensory gym.

“Mom?”

“Yes?”

“Can I have the iPad?”

“Of course.  Once we’re inside.”

And we were done.

**********

A totally easy conversation about something not so easy.

I relayed the conversation to my friend Jess later on that morning, partly because it was through her words and guidance that I was even able to have that conversation that way, but also to thank her and Brooke for giving me the permission to share with Howie.

She texted me back with “You know what makes these conversations so hard? US.”

How true is that?

I wrote “It was just so natural as a progression from him seeing something no one else would ever notice…I figured it was a good moment to call it and not a challenging moment.”

That is where Howie and I left it that morning.   His autism is his gift.  He knows that his brain works differently than others.  He knows that it means he can smell things more intensely than others, that he can create things in his head and make them come to life, that he can interpret the world in a way that is uniquely his.

And he’s knows he’s not alone.  Knowing that he has a friend whose brain works a little differently is so important.  We’ve talked some more about other kids we know who are autistic and each time a smile fills the room.

At some point I know we’ll have to talk about the challenges that autism brings.  Because that is as important as knowing the strengths. Part of understanding his differences is knowing that the sensory issues, the difficult time sitting still, the frustration over school projects and social interactions, and the perseverations – these are not because he’s not smart or incapable.   Actually just the opposite.  Knowing that his brain works differently will help him understand that his aides in school are there not as a crutch or punishment but as a tool for support, just like his sensory tool box.  He needs to know that it’s okay to ask to leave the room when he can’t concentrate, and that it’s okay to ask for help not because he can’t do it but because he needs to frame it in a way that works for his unique brain.

But we aren’t at that point yet.  That conversation will come – it may be next week or next month or next year.  What I know now is that I can’t plan it.  It has to fit the time and place with no script or plan.

Unique to him.  Just like the snowflake that he is.

my favorite holiday present ever. Howie's teacher made a snow globe with his picture inside.  As Howie says "It shows my 'pizzazz'".

my favorite holiday present ever. Howie’s teacher made a snow globe with his picture inside. As Howie says “It shows my ‘pizzazz’”.

Whether life’s disabilities
Left you outcast, bullied or teased
Rejoice and love yourself today
‘Cause baby, you were born this way

I’m beautiful in my way
‘Cause God makes no mistakes
I’m on the right track, baby
I was born this way” – Born This Way by Lady Gaga

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:

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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.

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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

Yes, once again, I know that’s  not a real song.

A year ago, I wrote The Ballad of SenseAbility Gym.  The post was about a vision.  A dream.  An idea of creating a space where all children and their families are welcomed and accepted.

A year ago, I wrote this:

It’s an original title for a brand new project of mine.

It’s perhaps the most important thing I’ve done since marrying my husband and starting my incredible family.

My very dear friend and I are opening a parent-led sensory gym.  As a non-profit. For kids just like mine.

We’re calling it “SenseAbility Gym: A Sensory Gym for Sensational Kids

The more we talked to people: parents of kids with special needs, parents of kids without special needs, therapists, teachers, you name it.   Not one person told us it was a bad idea.  In fact, they all said we had to do this.

And this:

We believe in the fact that all children deserve access to the types of therapeutic equipment used in their schools and their private occupational therapy clinics and we believe that parents need to interact with their children to learn what helps their child “feel better” and have fun. There are four important components to our mission.

  • Community: SenseAbility Gym wants its members to feel welcome, and part of the special needs community.
  • Safe Sensory Play: SenseAbility Gym wants parents of children with special needs to feel there is a safe place to bring their children for fun, exercise and sensory support.
  • Acceptance: SenseAbility Gym will have an environment that recognizes that all special needs children are different and that all learning styles, personalities, and abilities are welcome.
  • Support: SenseAbility Gym will be a place where families of special needs children can go to meet other families who share the same struggles.

We see the gym as a place not only for our kids and kids like ours to accommodate their sensory needs, but also as a place to build their social skills and interact with other children like them.  We see the gym as a place where moms and dads can interact with parents just like them.

As Howie told me the other night: “SenseAbility Gym is a place where kids can learn to get along.”

We see it as an another piece of the support team helping families know they are not alone.

Then I wrote this:

I need you to tell people about us.  Maybe you know a family who has a child with special needs in our area who could benefit from a membership at the gym.  Maybe it’s your own family.  Maybe you work for a company that is generous with community giving.  Maybe you know children who need to raise money as a community service project and they would like to purchase a piece of equipment.

I need you – my friends and family – to help make this gym a reality.  Not just for my kids or my friend’s kids.

But for mom who told me at our town’s Day In The Park that her daughter needs a place like this.

For the parents sitting in an Early Intervention family group right now wondering where they could find a safe place to meet once their kids turn three.

For the dad who is desperately looking for a way to connect with his autistic son, but can’t afford the play equipment his child needs.

And you came through.  We had support come in from all over the country. People not only wanting to help us financially, but with advice.  People who knew people in our area.  People who wanted to open their own space in their own towns.

Thanks to you, we raised the money we needed to open the doors of SenseAbility Gym in February of this year.

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That vision – that dream – for a community where everyone is accepted and welcomed came true.  We may have created the physical space, but the over 200 children and families that we have met since then have made the vision a reality.

I could write and write about this amazing place, but the stories aren’t really mine to tell.  They are theirs:

This place has given me a purpose.  It has connected me with the most incredible business partner and friend.  It has created a space where my kids are welcomed and accepted and known by name.

The families who come in have become my second family.

Thank you to every one of you who has supported us in this journey. Our community is so grateful.

**********

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I’m not very good at asking for money, but I have to.  SenseAbility Gym relies on private and corporate donations and grants to stay open.  No one at the gym takes a salary for working there.  We keep our membership fees low so every family can afford to come.

To do that, we need your support.  Every dollar goes right back into the gym – towards new equipment purchases, our rent and insurance, and programming costs for our free special needs yoga classes, social skills/friendship groups and parent meetings.

Click HERE to donate via PayPal or click HERE to visit our donation page at razoo.com.

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I’m lucky that I have the type of job where I can bring my kids to work.

Not every day.  Just every once in a while.

Some nights, it’s just me and Howie.

We have about a half hour between open gym sessions here.  We open for younger kids first, close for a bit, then reopen for older kids.

During that half hour it’s just us.

I clean.

And I let him go.

He runs.

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He bends a few rules.  Shhhh…

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We play drive-thru.

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He can just…be.

These summer days have been so hard.

So damn hard.

The routine changes.  The heat.  The everyone-is-home-and-talking-at-once-and-needing-everything-at-the-same-time-and-will-you-please-stop-yelling-at-each-other moments.

But here…in those thirty minutes…

Just free.

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“There’s a land that I see where the children are free
And I say it ain’t far to this land from where we are
Take my hand, come with me, where the children are free
Come with me, take my hand, and we’ll live

In a land where the river runs free
In a land through the green country
In a land to a shining sea
And you and me are free to be you and me” – Free To Be You And Me by Marlo Thomas

I’ve read my friend Jess’ post “physical” three times today.

I know that he can’t help it. He was up at 1am. We’re going his favorite place on the planet tomorrow. It’s the first real day of summer vacation. We have no routine.

In isolation I can take it. I can rationally understand the stimming, the crashing into me. When it is just the two of us, I can let it all go. Let him be who he needs to be. Let him scream, squeal, and climb all over me.

But we don’t live in isolation. It affects everyone in the house.  Constant conflicting needs. I have an older kid screaming at me to make him stop. I have a younger kid mimicking it all and infuriating everyone. I have him trying to choke or push on his younger brother’s belly because he needs a squish.

Not malicious. I know he can’t help it. But it hurts everyone else.

So I have yelled. Screamed. Yanked him away from potentially hurting his younger brother and pushing him off of me as he tried to climb into my skin.

And now I have taken away the one thing that is causing the spiral – the trip tomorrow. He has to earn it back. Rationally I know this is wrong. Putting the onus on a kid to reverse his behavior that he cannot control.

But I have four other people in the family. Including me.

They are all mad at me now.

And this all combined makes me feel not only like the worst parent in the world but the worst autism parent in the world. Because I should know better right? Me, the advocate for acceptance and understanding and tolerance. The one who goes into his school and reminds them that he cannot help how he behaves in times of stress/anxiety/uncertainty. I shouldn’t yell because none of them – my whole household full of people somewhere on different parts of the spectrum – cannot help it.

And yet, I did. And now the empty threat of no trip.

He and I sat on the stairs for a while. I held him as he screamed that it was everyone else’s fault.  That they were “blowing up his nerves.”

I brought him up to his room just now. Told him this was his safe space to escape just like the Learning Center at school was his safe place there. This was his place for a break. We brought out his train tracks and I told him to build one while I got a hastily thrown together dinner ready for Gerry before baseball in the 100 degree heat.

I told him we would earn the trip back together.

But I hate this. I really really hate this.

Not my kid. Not autism.

I hate my inability to handle it. I hate their inability to handle it. And I don’t know where to go from here.

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No one said it would be easy

But no one said it’d be this hard

No one said it would be easy

No one thought we’d come this far.” – No One Said It Would Be Easy by Sheryl Crow

(Three of two posts about Father’s Day.  Yes, I know.  Math is not my strongest subject.  Moving on…)

Tim was heading out the door for work.

I said my usual “Guys, say goodbye to Dad.”

“Bye Dad!” calls Gerry.

As the door shuts, Howie says “Oh good.  I am glad Father’s Day is over.”

“Hey, Howie, don’t be mean,” I snapped.  “We’re nice to everyone every day even when it isn’t Father’s Day.”

He was silent.

I continued to get the kids’ stuff ready for school but the statement kept rolling around in my head.

It just wasn’t sitting right with me.

Not his statement.  Mine.

I sent some friends a message:

As Tim left this morning, Howie said “oh good. Father’s day is over.” At first I thought he was being mean. But maybe the pressure of father’s day is what made him so out of sorts yesterday? I know I was on edge.

I thought back on the whole day yesterday.

Howie up at 3:30am.  Climbing into my bed and trying to climb under me.

Telling him when he woke up that it wasn’t nice to kick Dad out of bed on Father’s Day.

The strings of silly words and refusal to eat any food, only yogurts.

Reminding him to say “Happy Father’s Day” to Tim.  Prompted three times before he said it.

Asking to go outside in his pajamas at 8:30am to go swing on the swings.  Alone.  For 25 minutes.

Telling him we had to be on our best behavior while at work with me with all the dads coming in for Father’s Day.

Playing solo at the sensory gym with his own game.  Ignoring the other kids that he usually plays with.

Reminding him we were giving Dad space and alone time for Father’s Day so we were going to the store/farmer’s market/park.

Holding in a poop at the park because he wanted to stay there and not find a bathroom.

Telling him we couldn’t go back to the park after the bathroom because it was Father’s Day and we were going home to spend time with Dad.

My friend wrote back:

And it IS a lot of pressure… ‘it’s father’s day… be nice to dad, give dad a hug, we have to make x for dad…’ Whether it’s father’s day or a birthday or any other out of the ordinary day, it’s tough. I’m quite sure Howie was not being mean at all.

You would think at some point I would get this – truly get this – for Howie.  Clearly, I had anxieties about Father’s Day.  The split between wanting to make it special while also wanting to dive under the covers and hide.  In an attempt to make it the best day ever for Tim and forget why it was the hardest day ever for me, I whisked my kids out of here for the day. Out of their routine, out of their house, and ultimately out of sorts. The whole time telling them it was in the name of Father’s Day. The exact opposite of what I was trying to accomplish.

And so in one short honest sentence, Howie snapped it all back into focus for me.

Not mean.  Just the truth.

He wasn’t saying he wanted to be rude to Tim now that Father’s Day was over.  He was saying that it was too hard yesterday to hold it all together to be over the top perfect.

The pressure that was too much for me was too much for him too.

We’re back to our version of normal today, Howie and I.

Someone remind of this next year.

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Cause love’s such an old-fashioned word
And love dares you to care for
The people on the edge of the night
And love dares you to change our way of
Caring about ourselves
This is our last dance
This is our last dance
This is ourselves
Under pressure
Under pressure
Pressure” – Under Pressure by David Bowie

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