sensory processing disorder


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

note: I was given complementary passes for food, accommodations and other activities to attend the grand opening event at Great Wolf Lodge in Fitchburg, MA.  But all opinions are my own.

We had seen the commercials for a long time: Great Wolf Lodge was coming to the New England area!  My kids – avid water park fans but haters of bugs and heat – were so intrigued by the idea of an indoor water park that when we were offered the chance to be there on opening day, we couldn’t say no.  Even though it was on a school night.

We prepped for the trip the way we do with most new places.  I spent a lot of time with the boys on The Great Wolf Lodge website so not only did we know what would be there, we knew what rides and activities were going to be appropriate for their skill level and height.  They had pictures of the rooms online as well and we “walked” through the park, learning about each of the rides and requirements.  We created our own social story so there would be no surprises.

We arrived in the evening around dinner time and it was a little late for us to use the water park that night. There was no disappointment, however, since there was still plenty to do:

getting our wolf ears

getting our wolf ears

In the Howlin’ Timbers part of the park, there is a nine hole indoor golf course.  It was perfect for Howie and Lewis.  They had a blast playing the course.

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Mini Golf

There is also a giant arcade area near the restaurants and lobby.  Not surprisingly, this is where my kids wanted to stay the longest.  Like many arcades these days, the games are paid for on a pre-paid card so there’s no fumbling with money or tokens for each game.  I was amazed at how quiet the arcade was.  Usually arcades are not only my kids’ sensory overload nightmare, but mine as well.  The Great Wolf Arcade was quiet and calm. So we were able to stay and play for a long time.

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skee ball anyone?

Alongside the arcade is a pizza place and ice cream shop.  We opted for pizza to go and brought it back up to our room.  I have to tell you – I have incredibly picky pizza eaters.  The “Hungry As A Wolf” pizza passed the test from all three of them. That’s almost unheard of in our house.

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mmmmm…pepperoni

We were given a KidCabin Suite in the newest part of the resort, overlooking the Howlin’ Timbers play area.  The room was one queen bed plus a fold out couch and then a separate area with a bunk bed and day bed.  My kids settled into their own special area, which also has its own TV.  They were in heaven.

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Bottom bunk man. And yes, wifi is included free at the resort. We asked ahead of time.

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Oldest kid gets the top bunk

At the risk of TMI, this was the first time in our vacations as a family that Tim and I shared a bed at a hotel.  And the kids actually stayed in their beds.  That doesn’t even happen at home.

The kids had the buffet breakfast at the Lodge Wood Fire Grill restaurant in the morning.  Here’s where they were annoyed at me for taking a picture before they could eat:

ok...maybe only two were annoyed with me...

ok…maybe only two were annoyed with me…

There’s also a Dunkin Donuts on the premises for breakfast, lunch, dinner and whenever you need it.  Because this is Massachusetts and there needs to be one on every corner.  Thank goodness.

We hurried back to the hotel room to change into our swim clothes.  And off we went.

The water park area of the resort is split into two sides.  Great Wolf took over an existing water park area so one side is where the original park had their waterslides and the other side is all new.  It seem to cut down on the crowds and confusion and it wasn’t so overwhelming.  It also made it easier to find each other as Tim and I played “divide and conquer” with the kids.  He did the bigger slides with Gerry and Howie and I spent most of my time with Lewis in the Tadpole Pond area.

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obstacle course on Big Foot Pass

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The best way ever for my kids to fight each other

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lazy river riders

In all, my family tried out every ride at the water park.  Gerry’s favorite was the Howlin’ Tornado:

The Howlin' Tornado.

The Howlin’ Tornado.

That was the view of the Howlin’ Tornado from our hotel room.  Through the rain.  That’s right – it poured the whole day we were there.  Did we care?  Nope.

Howie’s favorite was Alberta Falls – the dark tunnel side.  It may or may not be because Tim told him it was like they were getting flushed down a toilet.

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Alberta Falls

And Lewis was incredibly happy to stay at the little kid area.  And I was incredibly happy to have him stay here.  I actually sat down.  At a water park.  It was a miracle.

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Life jackets are provided for all ages and all sizes at the park but we opted to bring our own.  Considering the fact that I brought three suits for each kid because I didn’t know what would fit or feel right for them in the moment, the more familiar we are with something, the better it is.  Our own life jackets bring that sensory comfort level.

Speaking of sensory issues, I kept checking in with Howie about how he was doing and feeling along the way.  The water park was not crowded but it was very echoey and I was worried that he would be on noise overload.  He kept telling me he was fine.  The only thing that seemed to bother him were the smells in the area near our hotel room.  Everything was new : paint, carpet, beds.  Those smells were slightly overpowering.  But there was no heavy chlorine smell in the park and no overly bright lights.  Every half hour or so, there was an alarm that went off at the wave pool.  But that was it. All of the places where I expected that he would have a hard time, he did great.  All of the kids did great.  I was amazed.

We had a late check out of 2pm, so we stayed at the water park area until about 1:30.  We changed quickly in the hotel room and checked out.

Our water park passes were good though until the park closed that night.  There are lockers and changing rooms if we wanted to stay.  We chose to check out the other parts of the Howlin’ Timbers Play Park instead.

The ropes course is included with the water park passes.  So we had to try that.  And by”we” I mean everyone else in my family that is not me:

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getting strapped in

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Who is this crazy kid up so high?

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The lower ropes course was more their speed.

I was super impressed by the staff at Great Wolf and how attentive they were.  When the line to go on the ropes course got long, two other staff members appeared out of nowhere to assist on the course.  The staff all seemed to be local as well, as indicated by their town on their name tags.  I love the boost to the local Worcester County economy with that.

After the kids were off the ropes course, they played two games of bowling each.  No rental shoes needed.  And bumpers for the kids so no gutter balls.  This was a big hit with my guys.  It was also not noisy at all like many bowling alleys.  Again that made it so much easier to stay and play.

 

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Strike!

There were several things that we didn’t get too because we just ran out of time and energy.  There’s a whole MagiQuest game and movie theater that we didn’t even attempt.  It looked like fun but we had to save something for next time.  There’s also a kid spa and a story time that we skipped.  My kids aren’t fans of people in costumes so we stayed away from those areas.

Because I am always looking through my special needs parenting glasses, there are a few things that stood out to me at the park.  First – it was very quiet.  Many areas were carpeted so there wasn’t a lot of noise bouncing off the floor and walls.  The lighting was also natural light in many places in the park.  The arcade was calm and quieter than most arcades I’ve been in.  There was also a variety of food choices on the menus for the restaurants so there seemed to be something for everyone.  We did bring a lot of our own food but every room has a decent sized fridge and microwave so that wasn’t an issue at all.

Now we were there for the grand opening and it wasn’t very crowded.  We’ll have to go back to see if all these things stay the same when the resort is full.

I also liked that everything was on their website so we could preview it ahead of time, even the room layouts. That was huge in making sure my kids knew everything before we left.  We aren’t the “surprise!  Here we are!” kind of family.

There are definitely some things to know before you go.  You can’t purchase day passes only to the resort so you have to stay overnight. The water park passes are included as part of the hotel room, as is the ropes course.  While there, I was thinking how wonderful it would be to have our kids’ home therapists with us to help with turn taking, peer interactions, and meals, yet I didn’t actually want to pay for a hotel room for them. Considering the number of special needs families who may need to bring a babysitter/therapist/teacher along to help out, I did ask if you can purchase additional day passes though for people joining your party who are not staying over.  The answer was yes to that. Definitely ask when you make the reservation to see how many day passes you are allowed to have.

Your room key is a chip in the water park bracelet so there’s no possibility of losing your keys (or having them stolen) while swimming and you can choose whose bracelets are activated as keys.  We did have to warn the kids that they would need to wear the bracelets all the time as this is usually a sensory issues for all of my kids.

When we got home. the kids were asking when we were going to go again.

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This mini-vacation came exactly at the right time for our family.  We needed a stress free time away from the house where we could just relax and be ourselves.

We got that at Great Wolf Lodge.

I know we will be back very soon.

Vacation
All I ever wanted
Vacation
Had to get away…” – Vacation by The Go-Gos

 

 

 

 

"The things that make me different are the things that make me ME!" - Piglet quote on the wall of our sensory gym

“The things that make me different are the things that make me ME!” – Piglet quote on the wall of our sensory gym

Last week I got an email from one of Howie’s teachers.  She explained that they had been working on a math assessment test about money and coins.  The directions were to count the money and show your work.  The teacher said that Howie had refused to show his work. His explanation was that he didn’t have to “because I have autism.”

She wrote that they had worked through the refusal by reminding him that this was for his third grade teachers and while she knew he could do it in his head, he needed to show his new teachers that he understood the work.

Now Howie has never been a big fan of reviewing concepts.  “I already know how to do this!” is a frequent refrain when doing assessments or review work.  But this was a new wrinkle.  He had never refused to do work because of autism before.

I wrote back and said I was kind of stunned by all of this since we’ve never said anything like that to him or around him before.  We’ve always talked about autism – and specifically his autism – in a positive light.  Talking about the gifts it brings him.  Lately we had been discussing how there are times when different brains have a harder time with some activities, and that’s why sometimes he needed to leave the room to take a test, or use his headphones or have a sensory break.  But we’ve never said he couldn’t do…anything.

I expressed my surprise at his statement and said I would talk with him about it.

Later that afternoon, Howie and I were sitting across from each other on the floor of our living room.  His iPad was on his lap and he was creating his newest world on his Blocksworld app.

“Hey bud'” I said. ” I heard that you had some trouble working on your math assessment today?”

“Yeah.  But the fruit snacks helped me get through it.”

“What was hard?”

“I had to write it all out but I knew the answer.”

“Your teacher said you told her that you couldn’t do the test because you had autism?”

” I said I didn’t have to do the work because I had autism,” he said. He didn’t look up at all.

“Well, autism isn’t an excuse you know,” I said. ” You can do hard things. But you still need to do the work.”

“I didn’t say I couldn’t,” he said.  “I said I didn’t have to.  I didn’t have to show my work. I could see it and do it in my head.”

I sat there and just looked at him.  His eyes never left the iPad, fingers moving and swiping and tapping as he built a cityscape for his Blocksworld cars to drive through.

Not an excuse.

A reason.

Not a negative.  A positive.

Not can’t do. Don’t have to to understand.

Part of his gift.  He could see it in his head. So why do the extra work?

He wasn’t trying to get out of doing the test itself.  Just the showing his work.  And not because he didn’t want to.

Because I didn’t have to.

He was actually advocating for himself.

“I understand now,” I said.  “But you know there will be times when you have to show your work, even when you can do it in your head.  It’s important for other people to see what you see.”

“I know,” he said. ” And the fruit snacks were really good.”

***********

In our world, autism isn’t and won’t be an excuse.  We’re never going to teach him he can’t do something because of how his brain is wired.

But it can be a reason why things are hard. Or, in this case, easy.

Maybe it’s semantics.

This is why we felt it was important that Howie knows and understands his diagnosis. So he could say, “I see this differently because my brain is wired differently.”

A few weeks ago, M. Kelter of Invisible Strings posted this on his Facebook page:

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Without the words to say “because of my autism”, how might this interaction have gone? Alternative scenarios might have involved a long, drawn out stand off, viewed as noncompliance, leaving everyone exhausted, frustrated and miserable.

Leaving my kid feeling like a bad kid.  A failure.  Different without explanation as to how or why. Removed for long periods of time from his general education classroom as things escalated, keeping him away from his peers.

He knows he leaves to take tests in a quiet space so he doesn’t get distracted.  We are working on helping him understand that his aide is there as a “coach” and “interpreter” when he needs help.

But he also needs to know that we will listen to what he is really saying and doing and go beyond the specific words that he is using  in order to make sure that we understand their meaning.  Because here he was, in his way, appropriately advocating for himself.

It’s our job to make sure we hear him when he does.

"The things that make me different are the things that make me ME!"

“The things that make me different are the things that make me ME!”

 

Although you see the world different than me
Sometimes I can touch upon the wonders that you see
All the new colors and pictures you’ve designed
Oh yes, sweet darling
So glad you are a child of mine.

Child of mine, child of mine
Oh yes, sweet darling
So glad you are a child of mine.” – Child of Mine by Carole King

A few years before I got married I worked in college admissions for a small women’s college in Vermont. The students that applied mostly came from the Northeast and for many of them they were first generation college students.

I remember a conversation I had with my friend, the assistant director of admissions. We were talking about a potential student who we knew would be a great fit for the school but hadn’t sent in her deposit yet. The assistant director had multiple conversations with the young woman. Finally, the applicant said “I want to come to your school. I just can’t put pen to paper to send in what I need to.”

It’s a sentence that stuck with me for some reason. Maybe it was the clever use of words to describe the difficulty in getting an idea out of her head and putting it out there for others to see. Maybe I just admired her honesty. Whatever it was it’s a phrase I’ve used often now as a parent when describing Howie’s difficulties in school.

**********

It was vacation week this week and Howie needed to catch up on some work from school. He had begun to check out about a week before vacation started and work wasn’t getting finished. Yesterday morning he came to work with me and with a lot of reinforcers, we got down to work. He was working really hard on a math sheet consisting of addition and subtraction of three digit numbers. He was concentrating really hard on watching the signs and borrowing or carrying when necessary. After every question he asked for a mom squish.

With about six questions to go, he put his pencil down.

“My brain is buzzing!”

I looked at him. His body was slumped in his chair. He was spent.

“Your brain is buzzing?” I asked. “What does that mean?”

“It means my brain is buzzing. Can I be done?”

I decided to push a little bit. “We can be done with this one. But let’s do a few more smaller problems and then we will be completely done.”  He had one sheet of single digit subtraction with a few problems left to complete.

“Okay.” He said quietly. He did the ones I asked. “Now can I be done?”

“Yup. Nice job!”

He took out his iPad and began to play his Blocksworld app.

“Hey – does your brain buzz like that a lot?”

“Sometimes,” he answered. He looked up briefly at the original three digit math sheet. “When I do work like that.”

deskwork

working hard

**********

It’s clear his frustration level comes from not being able to get the answer out of his brain. In school he uses phrases like “Mrs C! I have butterflies in my brain” when he’s asked reading comprehension questions and he starts to shut down. He can only complete three out of six rows of a subtraction math test in the allotted time.  When questions are modified or time restrictions are removed, he can get the answers correct. It just takes a teacher willing to sit and connect with him. Or help him get pen to paper.

He knows his stuff. He can read and answer questions about the book when it’s something he’s interested in. He can apply math concepts to real life situations and when given his time and his space he can do word problems and regular math problems. In his way.

**********

In the middle of vacation week on a particularly rainy morning, Howie was doing laps inside the house. He grabbed a kitchen timer and timed himself doing one lap in the house.

“I did that in 16 seconds!” He exclaimed. “Now let me do some homework. If I did two laps in the house, at the same speed, my time should be…32 seconds! Let’s try it!”

And for the next 10 minutes, he timed himself doing laps and predicting what his times would be.

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picture of Howie running…just not at home

**********

It makes me think a lot about the pen to paper issue going forward for Howie in school. The work is just going to get harder. The gap between what he knows and what he can get out of his head will grow when taught in a traditional school setting. He could start to fall behind academically – not for lack of ability but for an inability to do it in the manner required. His intelligence is his strength and it pulls him through the difficulties he has sitting, attending and well, putting pen to paper.

So what will happen to him emotionally when his grades may not reflect his true knowledge? How do we keep him from giving up trying to put pen to paper at all?  And how to we make sure he continues to have teachers who stop and listen to his “butterflies and buzzing” to help him through?

**********

I wish I could remember what happened with that applicant all those years ago. I can’t remember if she ended up matriculating or if she went somewhere else or didn’t go to college at all. I hope that wherever she ended up, she was happy with the decisions she made.

I’m forever grateful to her for teaching me a phrase that would help me understand Howie better than any other. And as we work through the butterflies and the buzzing in his head, I’ll make sure he knows that others have trouble putting pen to paper too.

“If you could read my mind, love
What a tale my thoughts could tell
Just like an old-time movie
‘Bout a ghost from a wishin’ well
In a castle dark or a fortress strong
With chains upon my feet
You know that ghost is me
And I will never be set free
As long as I’m a ghost that you can’t see ” – If You Could Read My Mind by Gordon Lightfoot

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

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