sensory processing disorder


It was a typical dinner Monday night when everyone was talking over each other and no one was eating.

There was bickering. Potty talk.  Anything and everything except actual eating.

Since this happens quite frequently, I have a mental list of “conversation” topics that usually redirect everyone long enough to get some food into them in between sentences.

When I say “conversation”, I mean mostly monologues of non-related topics, but each kid is taking a turn with it, allowing the others to eat.

And when I say “topics”, I mean I ask them about Minecraft.  So just one topic.  Singular.

Tonight was no exception.

I entered the cook time into the microwave and turned towards the boys at the table. “So, guys, if you could create your own Minecraft Mod, what would you do?”

(ed note: a mod is a modification made to the Minecraft code.  Gamers write code to create these mods to add additional things to the original game.  My friend Bec at Minemum can explain it all.  I know nothing about it except that my kids are obsessed with watching videos about them and begging me to download them.)

“I would create a space world where things could explode!” replied Howie.

“I would create a place where animals could go and there would be explosions!” said Lewis.

I took my dinner out of the microwave and sat down at the table.

“Well,” I said, “if I was creating a mod, I would make a sensory gym mod.”

I gave Tim a little smile. I was completely kidding.  I half expected them to come out with a “What?! That’s ridiculous!” and go back to discussing how to explode creepers and zombies.

Howie looked right at me.  “A sensory gym mod?”

“Sure,” I said. “It could have stuff in it like at SenseAbility Gym.”

Both Howie and Lewis were quiet for a moment.

“We would call it The SenseAbility Craft Mod!” said Howie.  “We could craft a trampoline out of leather and and blocks.  And it would be bouncy like slime. You’d make it on the crafting table!”

“And you could make a bolster swing too, ” said Lewis.  “You would need string.  And something to sit on.”

I sat in stunned silence.

Howie’s eyes got huge and bright.

“And the villagers – they would be autistic villagers!  They would be the ones who could be in the SenseAbility mod.”

Tim and I made eye contact. I gave him the “wow” look with my face.

“It would spawn autistic villagers and they would be the only ones in the village.  And they would go up to each other and would make the villager sounds and understand each other.” Howie was on a roll and was not stopping.  “And they would go on the trampoline and the swing.”

“Could you craft a weighted blanket?” asked Tim.

“Oh yes, you could do that.” Howie replied.

We were all giggling a little at the ideas, throwing them out one by one.

“You could make a square ball pit with blocks and craft something to put in it!” Lewis exclaimed.

“Could you make a wooden slide?” Tim asked

“YES!” Howie yelled. “You could make a slide.”

“You would need some fidgets too in your inventory,” I said to Howie, “just in case the villagers needed them.”

“Yes,” he said. “And the autistic villagers could trade emeralds for fidgets so they could feel better.”

He looked at me. “Spawning an autistic villager is rare but special, you know.”

I smiled at him.  “Yeah buddy, I know.”

Howie got up from the table. “Let’s play ‘SenseAbility Craft’ right now!”

“Wait, what?  Right now?  You didn’t eat anything!”

But Howie was already gone and Lewis followed right behind.  They went into the other room and pretended to be the autistic villagers, happily trading for fidgets.

I cleaned up their full plates of food and turned to Tim.

“You better start those Java and coding lessons with Howie.  I think he’s on to something.”

**********

It was December 2009 when I was listening to the developmental pediatrician list off the “red flags” for autism that she saw in Howie.  No pretend play, no ability to think of objects as anything other than their literal use.  Focused on the spinning wheels of the car and not the car itself.  Can’t do a pretend birthday party.

It was August of 2011 when I heard the same thing for Lewis.

“You’ll need lots of work and therapy to develop those skills.  I’m not saying he won’t ever have them, but they won’t come naturally.”

I left the office each time with my view of the world and my boys tipped on its side. I was crushed – mostly by the guilt of what I didn’t see. What could I do to help him?  Could I help him?

Turns out my autistic villagers just needed to figure it out in their own time and their own way, through a game that has no boundaries except the limits of their imagination and creativity.

Which, despite what we were told, seems to be endless.

I’m looking forward to the day when they create this SenseAbility Craft Mod.  I hope they let me play and be a part of  their incredible, creative and imaginative world.

Howie on the bolster swing.

Howie on the bolster swing.

lb_squeeze

Lewis in the squeeze machine. Crafting this one could be tricky…

Red sun rising in the sky
Sleeping village, cockerels cry
Soft breeze blowing in the trees
peace of mind, feel at ease.” – Sleeping Village by Black Sabbath

When I was a kid, I used to have these semi-religious, existential conversations with my dad about fate, free will, superstition and destiny. I would say I believed in fate, that some things were just meant to happen and meant to be.
He would use his “frog in the pond” story on me, asking me if he told me that there was a frog in the pond who controlled everything in the world, would I believe it. I would always answer “of course not”. Which led to discussions of science versus fate, proof versus belief.

Tonight, as the bases were loaded and I went back upstairs to my spot and put on my 2004 series winning pants and the inning ended, I would like the thank the frog in the pond for helping the Red Sox out of a jam.

- My personal Facebook status during last year’s Red Sox World Series run

 

I’ve always been a superstitious person.  I grew up believing in many of Jewish superstitions shared by my grandmothers. I remember how adamant they were that my mother not attend my grandfather’s funeral when she was pregnant with my sister.  I remember a lot of “pooh-poohing” and spitting from my older relatives when I was a child. Even now, I have a small “Raggedy Ann” doll in the back of my car that has been in the storage compartment of every single car I’ve owned because I believe it keeps me safe.  I have certain “lucky socks”, pants that I pull out for Red Sox World Series games, and I never drive on long trips wearing anything other than sneakers.

When I was pregnant with my boys, I never had a baby shower and I dutifully tied a red ribbon on the leg of the crib for all of my children, whether they actually slept there or not.  And I never, ever opened an umbrella in the house. Ever. Rationally I know that these superstitions aren’t based in any fact or science.  However, why tempt the evil eye?

When I became a parent, my belief in the need to “do things in this order or else something bad could happen” continued.  If Gerry would fall asleep in the car wearing a certain coat, I would make sure he had that coat on each time I needed him to sleep in the car until it was no longer appropriate seasonally. I would cook his oatmeal for the same exact amount of time each morning before daycare.   I would follow things in certain patterns to make sure the same result would happen.  Most of this was probably sleep deprived induced behavior and not true superstitions, but I believed that I had to do some things in a certain way to make sure I got the same end result.

Then came Howie and my superstitions kicked into high gear. Almost from day one.

He had certain clothes that he would be happy in and if he wore anything else, he would squirm and scream and cry.

I had to mix his formula a particular way or he wouldn’t drink it.  And he had to nurse from side to side in a certain pattern or he wouldn’t fall asleep.

He could only fall asleep on me, no one else.  If anyone else tried, he wouldn’t sleep for the rest of the day.

He had to be touching my skin to fall asleep.

He had to sit in a certain place at the table or he wouldn’t eat.

I had to give him a green plate.

We had to watch one episode of “The Backyardigans” before bed. And then he would sleep in my bed so when he woke up every 45 minutes, he had me there to help him get back to sleep.

I had to put socks on him at night or else he wouldn’t sleep.  Until that “wore off” and we went without socks. Or he needed to wear certain pajama pants to bed.  And then we moved to no pajama pants at all.

He couldn’t wear any other pants but cotton ones with no buttons to school or else he wouldn’t have a “good” day.

I had to give him his melatonin right before the shower, not sooner or later.  Brush his teeth after the shower, not before.

We had to snuggle in a certain way before bed or else he would be up all night.

I had to warm up his yogurt smoothie in the morning for exactly 30 seconds in the microwave or he wouldn’t drink it.

Then came the autism diagnosis for him.

And for me a better understanding of the comforts of routines and the unsettling nature of triggers.

These superstitions were my own creation based on his responses to his sensory needs – the patterns of “we must do this or else” were a reaction to what I didn’t understand.

Superstitions are a belief or practice resulting from ignorance, fear of the unknown, trust in magic or chance, or a false conception of causation.”

I didn’t know or understand why he needed socks worn a certain way, or why he could only drink a warm smoothie, or wear pants that were so tight they made a mark on his skin.  I feared changing up the color of plates because I feared the meltdown that would come.  I believed there was “some magic” in giving him the melatonin at a certain time and I thought that if we didn’t snuggle in “just this way”, all hell would break loose and we’d never sleep again.

But I get it now.

I know that he needs to feel comfortable in his clothes in order to get through the day at school or sleep at night.  I know now that the warm yogurt is a sensory aversion to anything too cold to drink.  I understand the comfort in sitting in the same seat at the table for dinner.

These aren’t superstitions.  These are genuine responses to known sensory triggers.

With that knowledge also comes the ability to move from the rigidity of the patterns.  After years of practice and tiny changes, we can serve food on different colored plates.  “The Backyardigans” is no longer the show of choice before bed.  He’s falling asleep in his own bed with me at the end of the bed, not tangled up snuggling in it.

We no longer practice from a place of ignorance or fear, but one of understanding, acceptance, and the belief that these sensory issues are real and the routines are necessary for comfort and calm.

There are times when I still catch myself falling into the superstition pattern.  Last night, Howie put his pajamas in a different order than usual, with his tight bike shorts on over the tight compression pants that he wears to bed.

I panicked for a moment, almost telling him that he will never sleep if his clothes are out of order because he has slept so well three nights in a row so changing it up would be disastrous.

Instead, I reminded him that with the smaller bike shorts underneath the compression pants, he will feel a tighter “hug” on his legs which will help him sleep better.

He smiled, changed his clothes, and climbed back under the covers.

I’m working really hard to recognize the appropriate cause and effect to help my kids understand these their triggers and needs.

However don’t expect to see me opening any umbrellas inside anytime soon.  And my “Raggedy Ann” doll will always be with me.

Chilling out in the compression pants and the Yogibo.

Chilling out in the compression pants and the Yogibo.

Very superstitious, writings on the wall,
Very superstitious, ladders bout’ to fall,
Thirteen month old baby, broke the lookin’ glass
Seven years of bad luck, the good things in your past

When you believe in things that you don’t understand,
Then you suffer,
Superstition ain’t the way ” – Superstition by Stevie Wonder

It’s May, 2014.

We are sitting in Lewis’ kindergarten transition IEP meeting.  As a team we are reviewing every service and service delivery to make sure it fits right for Lewis as he leaves preschool.  It’s not my first rodeo and I have plenty of anxiety over the whole transition process based on past experience.  Lewis’ incredible preschool teacher and team know this – and know Lewis – and we discuss every detail to make sure we are all on board and understand how kindergarten will look for him for the new school year.

We discuss his social skills programming, his need for visual and written cues when transitioning, his extended school year plan, and all the supports he will need for success.

“So now let’s talk transportation,” says his teacher.

I sit up straight in my chair, stiffening a little.

I know this is something that we’ve talked about in the past.  But we don’t really feel like he needs specialized transportation.  I really think he will be okay on the big bus.”  His teacher stops talking for a moment.  “Um, you don’t agree?”

Tim elbows me.

“You’re pulling on your sleeves,” he says. 

That’s my “tell”.  My sign that I’m having an anxiety attack.

It’s not that I don’t think he can’t be on the big bus.  It’s just that…” I take a breath.

It’s just that I don’t know how I’m going to manage all three kids getting to school at different times with different modes of transportation.”

************

This morning I sent a message to my friend Jess.

“I’ve officially lost my ability to write,” I texted.  “I’m trying to write about how Lewis taking the bus and me driving Howie is an example of not just our acceptance of what each kid needs but an understanding of those needs….None of the kids asked why one was going to school one way and one another…we’ve taught them that everyone is different with no stigmas attached.  But the words aren’t coming without sounding stupid…”

And she gave me brilliant advice like she always does: “Start in the middle.  Where the feelings are.  Don’t try to start at the beginning.”

Where the feelings are.

So here goes.

A long time ago, that meeting would have made me sad.

The big bus would have seemed like “The Holy Grail” of transportation.  Going to school the way most kids do.  Getting that big “first day of school” bus picture.  I would have looked at it as one of my kids can ride the bus and one of them…can’t. My anxiety in that meeting would have  focused on their disabilities in the negative, the kind of deficit model of looking at challenges and accommodations as a something bad and temporary with the hopes that maybe someday things will get better. I would have focused on the fact that I had one kid whose challenges kept him off the big bus, while both his big brother and little brother were able to ride it.

But here’s the thing.  I’m not that me anymore.

Last school year, we took Howie off of the mini bus. He had been riding the mini-bus since kindergarten to and from school and it’s written into his IEP that he needs specialized transportation. But for second grade,  I started driving him to school and he would taking the mini bus home.  He needed a “sensory overload free” way to enter school in order to start his day off right.  He didn’t want to talk to anyone or have anyone talk to him.  About halfway through the year, that need for a sensory overload free trip became evident for the ride home as well.  He would be able to use his calming tools to get through the school day, but have a very difficult time with that on the way home.

Once I began driving him both ways, his stress level leaving the house and coming home lessened greatly, spilling over to a better day at school and at home in the afternoon.

It wasn’t that he couldn’t take the mini bus.  Or even the big bus.

It was that both of those choices weren’t right for him.  For his success – academically and emotionally – he needed me to drive.  This accommodation was no different than any of the other supports listed in his IEP.

Two kids – two brothers – with the same autism diagnosis.  Needing two completely different accommodations.

Perhaps it’s semantics again.

But changing the question from “Can my kids do something”  to asking  “what is appropriate for them” – it made all the difference.

 

**********

May 2014

“So what do you think?  Do you think Lewis can take the bus to kindergarten?”

All eyes of the team are on me.

“I know that with a lot of prep he can.  I think we should give it a try,” I say.

Are you worried that Howie will be upset or jealous that Lewis is on the big bus?”

I smile. “No, actually, I’m more worried that Lewis will wonder why he doesn’t ride with Mom to school.” I say.  “But he will know that’s just how he gets to kindergarten.  And Howie will know that too.

I sigh.

It’s the logistics that make me nervous.  Gerry’s bus to the junior high comes at one time, the elementary school bus at another.  And somewhere in there I need to drive  Howie to the elementary school too.  But we will figure it out.  We always do.”

I shift in my seat, pulling at my sleeves.

Can we talk again about the fact that my last kid is leaving this amazing preschool for kindergarten?  I’m not so sure how I feel about that…”

**********9c28158d427833b7df2425147b2e6445

We talk a lot in our house about fair not meaning equal.  My kids have seen the cartoon of three characters of all different heights looking over a fence.  They each have different sized boxes to stand on so they can see over the fence line.  They aren’t equal sized boxes.  Each character needed something different to get them to the same place.

We’ve never said “I hope someday you can take the big bus to school.”

In our town, some kids walk.  Some arrive in cars.  Some take the big bus.  Some take the mini bus.

There’s no better or worse way to get to school.  For my boys, there’s no stigma attached to any mode of transportation.

My three kids need something different to get them to school.

For one, it’s mom’s car.

For the other two, it’s the wheels on the bus.

All through the town.

On the bus yesterday for kindergarten orientation.  He did just fine.

On the bus yesterday for kindergarten orientation. He did just fine.

 

 

 

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.

photo(31)

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.

photo(32)

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.

photo(33)

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.

photo(34)

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

photo(36)

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.

photo(38)

obstacle course on Big Foot Pass

photo(39)

The best way ever for my kids to fight each other

photo(40)

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.

photo(42)

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.

photo(43)

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:

photo(44)

getting strapped in

photo(45)

Who is this crazy kid up so high?

photo(46)

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.

 

photo(47)

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.

photo(48)

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:

photo(1)

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.

IMG_20130718_175733

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

Next Page »

Follow

Get every new post delivered to your Inbox.

Join 2,806 other followers