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 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.

 

 

 

 

Hero

“Can I help you find something?”

“Yes.  I’m looking for an end of the year present for my son’s teachers.”

“Can you tell me a little about them?”

“Well, sure.  I need something special.  I know we all say that, but I really mean it.”

I pause for a moment.

“My son calls himself Hero Howie at school.  But his special education teachers? Actually all of my kids’ teachers? They are heroes too.  His and mine.”

“I have just the thing.”

 

Because you help my kid out of the car in the school drop off circle with a hello every morning.

Because you watch him in the cafeteria before school starts to make sure he starts his day off on the right foot.

Because you welcome him in to the school and know him by name.

Because you believe in him when no one else does.

Because you understand how a slight muscle movement or seat squirm or change in town of voice means he’s overwhelmed and needs a break.

Because you modify the assignments to fit my kid.  Not because he can’t do the work but because you know when he’s reached his limit.

Because you read books and websites and attend seminars outside of school hours to understand my kid better.

Because you love to come to work every day knowing that it’s about my kid and his successes.

Because it’s not just a job to you.

Because you see autism not as a limit but as his strength and step out of the diagnosis box to see him as an individual.

Because you understand that the aggressions are not personal but part of the fight or flight overload of the day.

Because you wake up after those tough days ready to teach again.

Because you celebrate his successes and stay up at night figuring out how to help him the next day.

Because you believe in progress not perfection.

Because you do cartwheels in the halls and make collages of every single picture you’ve taken of him.

Because you request to be my child’s aide and teacher next year.

Because you love him.

Because you taught him to love himself.  And believe in himself.

To Mrs. M and Mrs. C and Mrs. S at the elementary school and Mrs. M at the preschool…

You.  You are the heroes.

And for that, I am forever grateful.

 

 

“And then a hero comes along
With the strength to carry on
And you cast your fears aside
And you know you can survive
So when you feel like hope is gone
Look inside you and be strong
And you’ll finally see the truth
That a hero lies in you.” – Hero by Mariah Carey

 

 

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

 

Evolution

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

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

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

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

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

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

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

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

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

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

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

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

4) development of self-advocacy skills

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

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

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

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

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

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

Now I know.

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

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

It was time to put all that into writing.

What is my vision for my child?

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

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

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

By being himself.

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

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

 

Take It To The Limit

Two different kids.  Two different scenarios.

Same internal parental struggle.

**********

Part One

In Howie’s first grade class, the kids take a math timed test every Friday.  They start in November with what they call “little plus” questions.  It’s 50 addition problems on a sheet, adding numbers from 0-10.  The kids have three minutes to complete the 50 questions correctly.  The goal is, of course, to learn and practice their math facts.

I knew from the beginning that this would be a big challenge for Howie.  I even mentioned it at his kindergarten to first grade transition meeting last May.  It’s not that he couldn’t learn the facts – his academic abilities have never been the issue.  It’s the processing speed.  And the fine motor skills for writing the numbers quickly.  And the anxiety.  And his highly competitive drive.  All of these issues had the potential to come together in a perfect storm of frustration and meltdown for him.  I thought this was a recipe for disaster for him, that there was no way he could answer all the questions in that time limit.  Nor did I think he could handle seeing the other kids complete the task when he couldn’t. Immediately I suggested we think of accommodations for him for the test.  I even bought a book called “Last to Finish: A Story About the Smartest Boyin Math Class“.

“Let’s wait and see how it goes,” was the response back.

Every week he tried that test.  Sometimes he’d complete 39 of them with the answers all correct.  Other weeks it was 42 with a few wrong.  One time he completed the whole sheet but had three wrong.

Every week he tried.  No meltdowns, no frustrations.  His aide and teacher worked with him on calming techniques before the test and during the test and they had him stand up in front of the class to teach the other kids how to stay relaxed during a test.  They taught him where he needed to be by one minute and by two minutes to complete the sheet.  They practiced outside of class and sent home sheets for us to practice at home.  He never mentioned if the other kids had moved on to the next “little minus” sheets.

Every week he tried.  And every week he came up just a little short.

At the beginning of April I mentioned to his teacher that maybe we need to rethink the accommodations again.  “We know he knows the facts.  He just can’t get them out fast enough.  It has to be affecting him, doesn’t it?  Even if he’s not verbally expressing it?”

He just couldn’t do it.

Until…

He did it.

He came bounding off the bus that Friday afternoon.  So full of pride.  “I DID IT! MOM!  I DID IT!  I MOVED ON TO LITTLE MINUS!”

He jumped into my arms for the best real hug ever.

**********

Part Two

Spatial relations have never been a huge strength for Lewis.  He doesn’t have a very good sense of where his body is in space – meaning he will often misjudge how close he is to a door handle or a corner on a counter top and walk into it or take a misstep and fall.  It’s clear he gets this from me, as I have misjudged the amount of space between my side view mirrors and the opening of the garage.  Three times.  I can never accurately tell how close I am to the curb when parallel parking.

Lewis and I also don’t like the feeling that we’re going to fall.  For example, he’s very uneasy walking on a bridge on playground that you can see through.  I don’t like climbing stairs that are open.

Lewis was especially afraid to sit up on a swing.  He would lie down on his belly on a swing with no problem and fly.  But sitting upright?  Nope.  No way.

So I talked with his home ABA therapists about it and we made it a goal.  He needed to learn how to swing.

He protested.  A lot.

They started small with just sitting on the swing for a few seconds with the therapist behind him.  The next time he’d sit a little longer.

Each time they’d say “It’s time to swing” he would say no.  But then he would.  For little bits at a time.

Several weeks of this passed.  He just refused to sit there by himself and he melted down at the suggestion of a gentle push without someone holding him on the swing.

Until…

He did it.

“MOM!  MOM!  I DID IT! I DID TWELVE PUSHES ON THE SWING!”

He wrapped his arms around my legs and looked up at me with the biggest smile.

**********

Herein lies the struggle.

And this is the part that is hard to admit as a parent.

With Howie, I had decided he couldn’t do something.  Everything about that testing scenario spelled trouble for him. I looked at the parts of his disability – the hyper-competitive nature, the inability to sit for that amount of time and attend to a task, the fine motor issues, the processing speed – and I decided he couldn’t do it.  I knew he knew the answers and I wanted him to show the teacher that he knew the work without the interfering behaviors that keep him from showing he knows the work. Did he need to show that he knew the answers in the same way that every other kid in the class did?  How many times did he need to not complete the task to show he needed accommodations?  And did we need him to “fail” before we changed it, or was it better to start him off differently from the beginning?

But he could do it like they did.  Yes, it took him until the end of April.  But the pride – the glow of accomplishment that he showed – would that have been there if he was doing the assignment differently than anyone else?

So where do we step in?  When do we say he needs to do it differently than the other kids?  At what point do we acknowledge that “different, not less” is okay?  Do we wait until Howie is self-aware enough to say “I can’t do this I need help” or I do decide that for him?

Now with Lewis it was the opposite.  I pushed for him to work through something that was uncomfortable for him.  He was uneasy, afraid, and unsure of himself on that swing.  But I asked the therapists to help him overcome it.  I decided he needed to learn how to swing.  Was that wrong?  Would it be so bad if he never sat up on a swing?  I am afraid of rollercoasters and any ride that spins.  Would it be acceptable for Tim to hire a therapist to make me go on a rollercoaster because everyone else does?

So what do I do? Where do I push?  When do I intervene?  When do I just let it go?

When we cross off a goal on an IEP or home program, we call it progress.  But at what cost?  Or whose definition of progress?

I want my kids to reach the next levels – to achieve the things I know they can achieve and more. To reach their limits and then feel confident to step over that line.

But more than anything I want them to be happy.  I don’t want them frustrated, scared, upset or angry with me or school.  Or life.

I need to figure out where my limit is too.

“So put me on a highway
And show me a sign
And take it to the limit one more time

Take it to the limit
Take it to the limit
Take it to the limit one more time” – Take It To The Limit by The Eagles

 

All Star

Self-advocacy.

I’ve been thinking a lot lately about self-advocacy and how it could fit for Howie. I read Jess’ brilliant piece at Diary of a Mom about her daughter Brooke and her participation in her IEP meeting and I sat there trying to think of ways that Howie could start to participate. Ways for him to feel included in how his school plans are made. Wondering how, at age six, it could work for Howie.

He’s always been very good at expressing to others his joy or dislike for certain activities, whether it be through his words or through his behavior. In fact, when he transitioned from preschool to kindergarten, his teachers and aides all said “Just give Howie a minute to tell you his side. You may not agree with him, but if he feels like you heard him, he’ll be more likely to figure out the solution together.”

This year, the toughest part of the day for Howie is his “Fundations” class. It’s the spelling/language arts lesson. It’s mid-morning, and he moves into a different classroom for the lesson. Howie is in a 1st/2nd grade combined class. For the Fundations lesson, the first graders move next door to work with other first grade kids, and the second grade kids stay in his classroom and are joined by other second graders. I know it sounds complicated, but it works. But for Howie there are several things at play: a different teacher, a different classroom, different kids and a subject that is clearly “non-preferred”. It’s not that he can’t do the work, he just doesn’t like it. From the beginning of school this year, it’s the one real bumpy part of the day. He knows when it’s coming at 9:30 and his behavior and anxiety starts to amp up. Many mornings, he’s had to leave the classroom and do his Fundations lessons in the smaller sub-separate classroom away from his peers.

Which would be fine if that’s what he needed. But what he really wants – and needs – is to be a part of the larger group as much as possible to get the full lesson and work with his peers.

I’ve done a lot of brainstorming with his teachers about it – incentives, plans, etc. None of our ideas seem to stick.

Turns out, the ideas had to come from him.

When Howie returned to school after winter break, he sat down with one of his aides to talk about Fundations. He was perseverating on the fact that it was boring and that he thought he had to say “A – Apple – A” each time (practicing letter sounds). I got a note home that they had created a social story to help him get through the lesson.

“How to Stay in Fundations” by Howie

His teachers sent a copy of it home so I could see it and we could talk about it.

I thought his teachers wrote it and shared it with Howie.

Turns out, Howie wrote this all by himself.

Since writing this social story, Howie has been able to not only sit through the whole Fundations lesson, but be an active participant with his peers.

So at the very moment that I was trying to figure out how to help Howie participate more, he was doing it himself.

Slightly ironic, no?

I know this is just the beginning of this for him. That the more he understands his body and his brain, the more he’ll be the one to express what he needs.

Because it really should come from him, right?

(so grateful to his teachers this year who understand how important this is too)

Baby steps towards self-advocacy for my all star.

“So much to do so much to see
So what’s wrong with taking the back streets
You’ll never know if you don’t go
You’ll never shine if you don’t glow

Hey now you’re an All Star get your game on, go play
Hey now you’re a Rock Star get the show on get paid
And all that glitters is gold
Only shooting stars break the mold” – All Star by Smash Mouth

 

Trying To Reason With Hurricane Season

E-mail I sent to Howie’s teachers this morning:

Just wanted to give you a heads up with Howie and the upcoming hurricane.  Howie is very sensitive to big changes in barometric pressure.  I am as well  but while it manifests itself in the form of a headache for me for Howie it causes big behavior changes.  His vestibular system gets rocked when the pressure drops.  I know it sounds weird, but we’ve seen it several times, including the last hurricane and that summer when the tornadoes rolled through western MA.  It’s usually about 24-48 hours before the actual weather event comes in.

With this upcoming hurricane, I just read that the pressure will drop incredibly low.  Based on the track of the storm, Sunday is more likely to be Howie’s harder day, but he could start feeling it as soon as today and into Monday.  If you see extra stimming, or he seems out of whack, it’s probably that.

Hopefully we won’t be hit too hard! At least it’s not snow!

These are the types of e-mails I write lately.

The news today is full of reports of a “Frankenstorm” as Hurricane Sandy heads towards the east coast.  Forecasters are calling for an incredible drop in barometric pressure as it hits land sometime late Monday and into Tuesday.

And so I write e-mails about meteorology and storm tracking and sensory processing disorder.

I know that for some people this connection makes no sense.  As in “really?  The weather affects your kid’s behavior? Come on.  Weather changes were something that made old people complain about their aches and pains, but it’s not really real. ”

It’s just an excuse for his bad behavior.

I’ve been at this long enough with my kid to tell you.  It’s real.

I get headaches and neck aches right before a storm comes through.  When Hurricane Irene passed near us last summer, it felt like someone was standing on my head.

I can verbalize it.  I can explain what is happening and why.  And people understand it.

My son can’t explain it why all of a sudden he needs to run laps or crash into things or spin in circles and stim.  His reactions to the same trigger look like behavior problems.

It sounds like hooey to someone who doesn’t live it.  But I’ve tracked it.  Storms, moon phase changes, illness…all these things affect my son’s sensory system.

They probably affect all of our sensory systems. But most people have learned to cope with how we’re feeling.  A few extra Tylenol.  Or a nap.

Howie is still learning what makes him more regulated.  He knows what activities make him feel better but he has yet to figure out the trigger or how to do it most “appropriately” for the setting.

I’m not making excuses for how he’s acting. If he’s being unsafe or not able to be in the classroom then he needs to be removed, redirected and helped.  Unacceptable behavior is still unacceptable behavior.

I will however be proactive in helping those around him understand what is a sensory response versus what is a behavior so he doesn’t get into trouble for something he can’t control.

So that maybe he gets an extra sensory break during the day.  Or two visits to the OT room versus just one.  Or just a well trained eye on him looking for signs of discomfort and dysregulation.

And hopefully we can teach him why he’s feeling the way he does so that next time, he has the tools he needs to cope and feel better.

So I send e-mails warning of Hurricane Howie as Hurricane Sandy approaches.

At home, we’re stocking up on Stonyfield yogurts, fruit leather and flameless candles and padding the house with pillows and bean bag chairs for safe crashing.

Getting ready to weather any storm that comes our way.

Got our umbrellas ready

“Squalls out on the gulf stream,
Big storms coming soon.
I passed out in my hammock,
God, I slept way past noon.
Stood up and tried to focus,
I hoped I wouldn’t have to look far.
I knew I could use a Bloody Mary,
So I stumbled next door to the bar.” – Trying To Reason With Hurricane Season by Jimmy Buffett

 

Wordplay

I have a million and one things jumbling around in my head.

I want to write about them all.  But I can’t seem to get them out.  They are stilted fragments of mixed up blog posts stuck in all different parts of my brain.

So I needed something good.  Something short.  Something that made me smile.

Yesterday in Howie’s backpack, this came home:

“I used my fingers”

There are so many things I love about this.  Here’s a few:

1) He answered the question.

2) He answered it very literally.  Because that’s him.  How did you count them?  I used my fingers.  Of course.

3) His teacher did NOT mark it wrong.  Because it’s not wrong.  Was it the answer she expected?  Nope.  Is it right?  Yup.  This is what good teaching is.  His teacher GETS him.  She could have said that wasn’t correct.  Instead, she prompted him with another question about it to help him get to the next level.  It takes me back to my friend Stimey’s post Not Even Wrong.  Good – GREAT – teachers respect how our kids think, give them credit for that, and then work with them to see it from another perspective.

4) I love how he spelled out “yoosd”.  Phonetically it’s perfect.  And another example to me of how tough our language is to learn – especially for literal, rule minded, pattern loving thinkers.  Of which I have three in my house.

5) Howie’s handwriting.  It’s better than my husband’s.  This kid struggled with holding a pencil from the start.  You’ve come a long way, baby.

6) My kid is doing math.  And he’s writing.  And he’s getting the concepts and generalizing them.

Ask me if I thought this would be possible for first grade…on second thought…don’t.

There are so many ups and downs on this parenting rollercoaster.  So many times my heart breaks a little for my kid when I watch how hard he struggles just to be comfortable in his own skin.  So many many sleepless nights for us all.

And then there’s this.  The progress that happens in an environment tailored to celebrate the successes of my child and challenge him to think in different ways.  The willingness to think outside of the box for my kid to help him think outside of the box.

That’s worth celebrating in a blog post today.

“I built a bridge across the stream my consciousness
It always seems to be a flowin’
But I don’t know which way my brain is goin’
Oh the rhymin’ and the timin’
Keeps the melodies inside me
And they’re comin’
Till I’m running out of air
Are you prepared to take a dive into the deep end of my head
Are you listening to a single word I’ve said

Ha La La La La
Listen closer to the words I say
Ha La La La La
I’m stickin’ to the wordplay” – Wordplay by Jason Mraz