In This Moment

(editor’s note: yes, another post about saying goodbye to an integral member of our team and life.  I have more to write about on other things…the words just aren’t flowing yet.)

Dear Mrs. T,

I don’t know where to start to say goodbye and thank you for all that you’ve done for our family.  I couldn’t even say hello to you last time I saw you without crying…not once but twice.

I guess like all things, I’ll start at the beginning.

You remember how we first met? Howie was turning three. He had been in early intervention for occupational therapy under “clinical judgment” for sensory processing issues but did not yet have his autism diagnosis. You went into the private daycare that he was attending to evaluate him to see if he would qualify for services at our public preschool. Remember how he was on the verge of being kicked out of that daycare? After you went to see him there, we sat around a very small table at the preschool and we discussed Howie’s eligibility for special education services. While he didn’t qualify at the time, the preschool team all agreed to let Howie start at the public preschool that March so you could keep an eye on him.

And keep an eye on him you did. You had me fill out the “Dunn Sensory Profile” and for the first time I was able to see quantitatively his sensory needs and differences. Questions like “does your child hug too tightly” or “does your child spin” were now indicators of sensory processing issues and not random unexplained things that my child did. You taught me words like “proprioceptive” and “vestibular” and explained to me what a sensory diet was in terms that I could understand. You consulted with Howie’s preschool teachers as we tried to figure out what was going on with him. This wasn’t something special that you did just for us. This was just what you do.

Remember when Howie did get his autism diagnosis at age 3 ½? That now we had a place to start with an IEP and goals and ways to help him? You were right there at his first IEP meeting to bring him on for direct services for fine motor work as well as a consult for all things sensory for him in the classroom. You gave me ideas for equipment and exercises that we could do at home to help him regulate. You introduced him – and me – to the How Does Your Engine run program and worked with him on his handwriting, his tune ups, and classroom fidgets. You were always willing to try new things and look at his programming from a sensory perspective, and never once dismissed an idea that we had to help him.

The incredible wealth of knowledge and experience that you bring to the table when working with a student and their family is extraordinary and we benefited from that immediately. You never once looked at the “autism” label and implemented a cookie cutter OT program around that label. I didn’t know it at the time, but I know now how seamlessly you worked with the whole preschool team to teach self-regulation, handwriting without tears, and fine motor skills.  You were part of my oldest son Gerry’s preschool programming and I didn’t even know it.

With your wealth of knowledge and experience comes this incredible way of predicting the future needs and successes for children. Remember when Howie “graduated” from direct service with you in kindergarten?  Remember how I panicked? You called me and reassured me that he was ready and you wouldn’t take him off your caseload if you didn’t believe that to be true.

Sure enough, Howie’s handwriting is better than everyone else in the family. You just knew he could do it.  You believed in his abilities when so many others did not.

With the reassurance that he was ready to come of your direct caseload, you promised that you would stay on as a consult for his sensory diet. You created specific sensory and self regulation/advocacy goals for him in his IEP. At this point in time, Howie was having a particularly hard time not only with sensory overload at school, but with learning what tools could help him “feel better”. You called me to say you were creating a sensory tool box for him to have in his classroom and asked for my input into what should be in there. You worked with me, his teachers and his aides to help teach Howie what he needed and how to ask for it. You never let him flounder.  You were always there to make sure he got what he needed to make it through the day.

I remember so clearly one IEP meeting when Howie was in first grade. I expressed my sadness and worry over his struggles and his inability to figure out what he needed. “Just wait until he’s 8 or 9 years old,” you said. “You will see tremendous growth not just in understanding and coping with his environment, but also in his ability to ask for what he needs to cope with that environment.” You were absolutely right. At our third grade IEP meeting, most of his self advocacy goals had been met.

You never said “I told you so” at that meeting, but I know you were thinking it with a smile.

And now here we are.  Your retirement.

You have been with us from preschool through the start of this year in fourth grade. You have watched my child grow in ways I never could have predicted (but you did).  You listened to every single concern I had along the way and addressed them.

Your institutional knowledge of my child has been instrumental in his successes and in helping him get the accommodations and services he needs in the classroom.

Your kind and gentle manner has guided him and me through the darkest of times.

You saw things in him that no one else did.  You changed his classroom to fit him and never once asked him to change to fit his environment.

You taught his teachers what his movements and mannerisms and outbursts were trying to tell them.  You believed that behavior is communication and you looked at his world through his eyes to see how to help him.

Everything that I now understand about sensory processing issues and autism, I know because I learned it from you.

I am grateful every day for what you taught Howie, his teachers, and our family about our sensory issues.

And I thank you for helping us embrace and not fight his unique way of interpreting his world.

Have a wonderful next chapter as you head off into retirement.  You will be missed, but never forgotten.

Love, Alysia

“No matter where I go

Every time I look back on this road

You’ll always be a part of who I am

Everything I’ve known

Every seed of greatness you have sown

Through good and bad

Your love has watched me grow” – In This Moment by KC Gan and Alison Yap

 

The Tiger Cub

ed note: I’m departing from my usual song title today to share a poem written by my oldest.  He didn’t write it for Autism Acceptance Day.  But it’s a perfect poem for it. And I’m incredibly proud of him  – not just for writing it, but for believing it and believing in his brothers and the members of their autistic village.

 

The Tiger Cub by Gerry* Butler (age 12)

Long ago, a baby tiger was born,
And he could not speak
As smart as he was,
His future seemed bleak
He was as smart as can be,
And witty and kind
But all the other animals
Would not share their time
“You’re not as good as us!” they said,
“You never will be!”
But in his head the tiger thought,
“I believe in me”
One day at school,
When he finally learned to read and to write,
He wrote down his thoughts and his teacher exclaimed,
“My Goodness, this tiger is bright!”
And all through the kingdom,
And all through the land,
He was known as,
The Tiger Who Can

My Tiger Cubs

*his alias

 

Sleeping Village

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.

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

 

Superstition

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.

“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

 

The Wheels On The Bus For The Third Time

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…”

**********

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.

 

 

 

 

Diamond Road

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’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

 

Child Of Mine

 

“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:

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!”

 

“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

 

If You Could Read My Mind

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.”

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.

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

 

The Rainbow Connection

Connection

“Friendship is born at that moment when one man says to another: “What! You too? I thought that no one but myself . . .”” – C.S. Lewis

**********

Note in Howie’s log book last week from one of his 1:1 aides: “After social group Howie insisted on flapping his arms.  The group was not at all overly stimulating or excitable.  When I talked to (him) about this he said ‘sometimes autistic people have to do that thing.’ I said ‘stimming’? And he said ‘yes I need to stim and flap my arms’…he said sometimes he needs to flap if he’s excited.”

**********

Howie had his eighth birthday party two weeks ago.  We invited his whole class because, well, because.  I could give you some reason like making sure to include everyone but truthfully there wasn’t anyone he thought he couldn’t invite. He’s been with most of the kids for two years and he really wanted them all at his party. We did one of those indoor trampoline places parties because where else can you go with 28 2nd graders and contain them all?

I was nervous of course.  I don’t get to see how kids interact with Howie except for a few moments here and there.  I get the log book notes and information from teacher meetings, but I never see it with my own eyes.  I watched these kids interact with him – seek him out – not just because it was his birthday but because they care about him.  They told inside jokes on the bench as they waited for their jump turn.  They checked in on him when they were jumping. They jostled for position around him for cake.

When we got home and settled in, Howie opened his presents.  Some cards were on green construction paper (his favorite color).  Some cards had his special “Hero Howie” symbol on them.  All of the cards had special note, poem, story, or picture drawn just for him about him.  Every present was something he wanted that he didn’t already have.  I asked Howie how the kids knew.  “They asked me in school and I told them.” he said matter-of-factly.  Well of course.

That night I sent his teacher some pictures from the party with the note: “All those kids are quite incredible and so so good to Howie. They knew what he liked and how to interact with him.  That is all because of you. Thank you for creating a classroom and a space that allowed my kid to have his real big first friend party. You sure I can’t convince you to teach third grade? :)”

His fabulous teacher wrote back: “They absolutely adore him and are really cheering for him each and every day.  I’m so glad to hear that the party went well!”

**********

Note in Howie’s log book three weeks ago from his other 1:1 aide (paraphrasing): “Howie seemed to be having a hard time with his shirt.  It was making him uncomfortable all day and he couldn’t focus.  We sat and talked about the things that I am bothered by and he was able to work through it.  It really seems to help him when others connect with him about sensory issues.”

**********

From my blog post “Born This Way part two“:

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.

**********

For some April is about Autism Awareness.  And that’s fine and good and it’s what works for them.

In our house, though, this month (and every month) is about autism connection.

According to the experts, that’s supposed to be something that my boys can’t do, right? Connect with others.

How wrong could they be?

I see connection every day with my kids – between teacher and student, between classmates and friends, brother to brother, and parent to child.

I see it in the children who come to our sensory gym. When families are given the safe space (physically and emotionally) for their kids to play, relationships and playdates and connections blossom.

For us- for my boys, for me as their parent, this month is about connecting  to find that piece – that tie that binds – to make one feel less alone.  To make one feel part of a community.

And for helping the world understand that community, one conversation at a time.

**********

From my personal Facebook status on March 31st:

“When Howie is feeling “out of sorts”, he often asks for a “mom squish”. Probably because I am the squishiest of the bunch.

Tonight, I was complaining that my back hurt as I sat down crooked on the couch. He came over to me, looked me right in the eye, and said “do you need a Howie squish?”

It’s the eve of Autism Awareness Month and every day my kids smash and crash their way through every stereotype and every myth. But in our house it’s not about awareness. I want them to know that they are accepted, understood, and loved for who they are.

And those Howie squishes? They make all the aches and pains go away.”

Happy Autism Connection Month.

 

“Why are there so many songs about rainbows
and what’s on the other side?
Rainbows are visions, but only illusions,
and rainbows have nothing to hide.
So we’ve been told and some choose to believe it.
I know they’re wrong, wait and see.
Someday we’ll find it, the rainbow connection.
The lovers, the dreamers and me.

Who said that every wish would be heard
and answered when wished on the morning star?
Somebody thought of that and someone believed it.
Look what it’s done so far.
What’s so amazing that keeps us star gazing
and what do we think we might see?
Someday we’ll find it, the rainbow connection.
The lovers, the dreamers and me.

All of us under its spell. We know that it’s probably magic.

Have you been half asleep and have you heard voices?
I’ve heard them calling my name.
Is this the sweet sound that called the young sailors.
The voice might be one and the same.
I’ve heard it too many times to ignore it.
It’s something that I’m supposed to be.
Someday we’ll find it, the rainbow connection.
The lovers, the dreamers and me. ” – The Rainbow Connection by Kermit the Frog

A great way to be part of the conversation is to purchase one of these #wearthechange shirts created by my friend Jess.  Through the month of April, the net proceeds from these shirts will be split three ways with the Doug Flutie Jr. Foundation for Autism, The Autistic Self Advocacy Network, and my nonprofit SenseAbility Gym.

Here is Gerry modeling his new shirt (he wanted to remain headless).  Click on the caption to go to the Zazzle Store.

http://www.zazzle.com/togs2gobydiaryofamom

 

Born This Way (part three)

Note: As I wrote in part one and in part two, I asked Howie if I could share this story 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.  And this time, I asked all three boys if it was okay to share the story.

Chronologically, part three came after part two but before part one.  But this is how it all came out here.

Over the past few weeks since the “big” conversation that wasn’t so big, Howie and I have been talking a lot about autism.  It’s not hard to bring it up – at the sensory gym we have a community bulletin board with information from our local autism resource center, the Doug Flutie Jr. Foundation for Autism, and Birdhouse for Autism (an app and web based application for tracking therapies, medications, sleep and anything and everything related to a child’s well being). So the word comes up whenever we’re there.

But it had always remained between us.

We’ve also had some discussions about other kids we knew who were autistic.  Friends who had given us permission to share that information.  Each time, it was met with a smile.

Yet for some reason, I never mentioned the fact that his younger brother was autistic too.  Again, this is on me.  In my head I still thought there had to be the right time and place to talk about it.  That Lewis should know first.  Or there had to be some specific chain of events to make it “the right way”.

Apparently, I don’t learn my own lessons.

Two weekends ago, all three kids were sitting at the kitchen table.  We were listening to music and the boys were talking about whether or not they had good hearing.  Gerry said that our whole family had bad hearing.  Before I could step in and protest with my expert hearing skills, Howie said “No, I have super hearing.  I can hear and see things that others can’t. I have what’s that word again?”

He paused.

“Oh yeah.  I have au-TIS-m.”

(so yes, the accent is on the wrong syl-LA-ble.  But still.)

Gerry looked over at me and didn’t say a word.  Neither did I.

“I have autism,” said Lewis matter-of-factly.  “I just have clogged ears.”

Howie looked at him and said, “You have autism too?  Well, you do have a super memory.  You know the whole grid of the Marvel Super Heroes characters on the Playstation game.”

“Yup,” I said.  “Lewis has autism just like you, Howie.”

“Does our whole family have autism?” Howie asked.

“No. ” I said.

Gerry looked at me and quietly asked, “Do I have autism?”

I shook my head no.

And that is how Lewis found out that he was autistic too. No big reveal. No grand plan. Just “yup, you’re autistic.”

Gerry got up from the table to get some more milk.  I pulled him aside for a moment.

I thought back to a conversation that Gerry and I had almost two years ago to the day:

“Don’t you think he should know about his autism?  So he understands?  I know most of his friends are from his school and are like him, so that’s really good.  But at some point, shouldn’t he know?  Because really?  Sometimes it’s very stressful for me that I know but he doesn’t.”  His eyes teared up a little.

I knew I had to choose my words very carefully here.  This…was important.

“Yes, of course he needs to know.  Dad and I just have to figure out the right time.  He’s only five.”

“Do you have friends who have kids with special needs?  Kids who are older?  Can’t you ask them when they told their kids?”

And then my kid wows me.  Again.

“You know, it’s not fair.  All his timeouts.  At first I thought they were good.  Teaching him.  But if he can’t help it, then the timeouts aren’t fair, are they? It’s like if you’re driving and your car’s wheels lock up.  And you hit something and cause a lot of damage.  It’s not your fault that the car didn’t work the way it should.  Right?”

I’m in awe of this kid.  Of how much he loves his brother.  Of how much he gets it.

“Mom.  Shouldn’t he know so he understands?”

I touched Gerry’s arm and brought him into the other room.

“You remember you wanted me to tell Howie that he was autistic?  Well, I did.”

He looked right at me.

“Thank you,” he said.

**********

Since then, the topic has come up quite a bit.  My boys – all three of them – are attempting to understand what autism means to them and for them.  There have been attempts at one upping each other with “well, my autism means I can hear the grass grow!” and it makes for a good discussion about how brains work and no, you can’t really hear the grass grow. In quizzing Howie if he washed his hands, he told me that only someone with autism could have good enough smelling to smell how clean his hands are.

Then there was Howie’s question to me one morning at 5am: if everyone in the world had autism, does that mean no one in the world has autism?

For which I had absolutely no answer.

Just this afternoon came “Is autism sensory?”

And of course there was the moment when he told me his gift was part of his soul. When he realized he was born this way.

But my favorite comment came from Gerry last week.  We were talking about how all of us in the family have brains that work differently. It’s important to know that and understand why so instead of getting frustrated and struggling with the things that are hard for us, we can acknowledge the challenges and use our strengths to cope with them. We talked about what I wrote in part two:

“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. “

I told him that this was why right now we’re focusing on positives that come with autism for Howie.

“I like that,” Gerry said. “I like that he looks it like it’s his superpower.”

Me too.  Me too.

my three superheroes

“My mama told me when I was young
We are all born superstars
She rolled my hair and put my lipstick on
In the glass of her boudoir

“There’s nothing wrong with loving who you are
She said, “‘Cause He made you perfect, babe”
“So hold your head up girl and you’ll go far,
Listen to me when I say”

I’m beautiful in my way
‘Cause God makes no mistakes
I’m on the right track, baby
I was born this way
Don’t hide yourself in regret
Just love yourself and you’re set
I’m on the right track, baby
I was born this way” – Born This Way by Lady Gaga

For a great way to talk about autism with your child (or to learn more yourself), check out this great booklet from The Autism NOW Center and The Autistic Self Advocacy Network at http://autismnow.org/wp-content/uploads/2013/11/Welcome-to-the-Autistic-Community-Adolescent.pdf