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

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

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

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

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

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

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

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

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

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

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

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

4) development of self-advocacy skills

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

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

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

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

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

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

Now I know.

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

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

It was time to put all that into writing.

What is my vision for my child?

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

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

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

By being himself.

photo(19)See my reflection change
Nothing ever stays the same
But you know the names The Game
We don’t know what it means
Nothing’s ever what it seems
Unforgiven…unforseen

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

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…

IMG_20130501_100749

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.

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

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

“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

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

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

Dear Mom at school pick up today,

“I have been there too.”

I’m not even sure what else to say but that.

I know that feeling.  The one when you don’t just think that all eyes are on you.

You know they are.

How could we not be watching?  The screaming.  The flailing.  The teachers huddled around your child.  And you.

We were all right there the first day.  We stood in the pouring rain as you tried to coax your son out of the school doors. In hushed tones we all chalked it up to first day jitters.  I even joked about it to my friend standing next to me.

“My son used to hate leaving school too.  I’d have to drag him out of here,” I said with a nervous laugh.

But something in me just knew.

And then today as we all left school I glanced back at the playground and saw you there.  He didn’t want to leave.  Kicking, screaming. Our fabulous teachers were sitting with you and him, keeping him safe as he melted down.

You know we’re trying to avert our eyes.  And through the blinked back tears you appreciate it.  You do.

In the car, I let out those tears you were holding in.

I was right there where you are.  Just four short years ago.

That was me.  That was Howie.  Our first year of preschool.

I could hear him through the window as he screamed that he didn’t want to leave.  Every other child came out but mine.  He would be carried out, flailing his arms and legs, yelling that he didn’t want to go home.  I stood there every morning with my eyes burning and a lump in my throat as I struggled to bring him out with one hand, balancing the 20 pound bucket car seat carrying baby Lewis in the other.

I was crushed emotionally and physically.

Those moments, for me, were my worst parenting moments.  I felt like a failure.  I could handle the meltdowns and the behavior issues at home.  I could just let him line up his cars and stay in our house and watch the world go by out the window.

But the public display outside of school put me on display.

Everyone else’s kid cries when they leave their parent for the first days of school.  Not mine.

Everyone else’s kid runs into their parent’s waiting arms when school is over.  Not mine.

I felt like the world was sitting in judgement of me.  Why didn’t he want to be home?  What was she doing to him there?

My only saving grace was that the staff at the school knew me personally.  They knew I wasn’t beating him or abusive in any way.  They worked with me to create transition boards for Howie for school.  I took some pictures of our daily after school activities and every morning I’d let them know three things we were doing when we got home.  Maybe it was lunch, playing with cars, and watching a show.  Maybe it was a trip to Target.  We soon discovered that it wasn’t that he didn’t want to come home, but that he didn’t know that the day would continue on with new activities.  Slowly, we were able to get to a place of a smoother transition out of the classroom.

The staff knew this wasn’t about our home life, but more about Howie’s ability – or inability – to transition from home to school and back to home.

You see…this was all before his life changing – and in many ways our life saving – autism spectrum diagnosis.

So…back to you, Mom at school.

I’m not saying that your son is on the spectrum.  I don’t presume to make those judgements or diagnoses.  Maybe you already know what is going on with him.

Maybe it’s just a phase.  Or maybe it isn’t.

And, if you’re like me, you’re feeling stuck.  The last thing you want is to draw attention to it all but you also want someone to step in.  You want no one to see, yet you need someone to see it too.  Someone to validate that it isn’t just you failing as a parent.

I’m offering myself as that someone to you.

I’m not sure how to approach it, though.  Had someone come up to me out of the blue, especially another parent, I might have rejected it outright.  Said “nope, we’re doing just fine, thank you.”  It took a special teacher to break through to me before I could be the one to reach out.

So, if you’re reading this…next week I’ll hang back a little at drop off and introduce myself.  Just to say hello.  First week of school and all that.  The next morning, I may mention that I have boys too.  I may mention how lucky we were to have this school in our town because they were so good with all three of my boys, especially my middle guy who had some issues leaving school too.

I’ll figure out someway to let you know that you’re not alone.

Some way to let you know “I have been there.”  And some way to let you know it can – and does – get better.

See you on Monday.

Sincerely,

Alysia

At age 3. First day of preschool.

And this year…age six starting first grade

You’re not alone, together we stand
I’ll be by your side, you know I’ll take your hand
When it gets cold and it feels like the end
There’s no place to go, you know I won’t give in
No, I won’t give in

Keep holding on
‘Cause you know we’ll make it through, we’ll make it through
Just stay strong
‘Cause you know I’m here for you, I’m here for you” – Keep Holding On by Avril Lavigne

I knew from the moment his head peeked around the bus seat that he had had a rough day.

When Howie’s upset, his whole face scrunches up into a giant frown.  He would have the worst poker face.

My own face must have given me away when I looked at the bus monitor.

“Yes,” she said.  “He is very grumpy about something from school.  But he held it together on the bus.  Told me with his words that he didn’t want me to talk to him or sit with him.  He just sat there.”

I grabbed Howie’s hand and walked him off the stairs.

We stomped together down the driveway.  I asked if he wanted to talk about it.

“NO!”

“Do you want to go in?”

“NO!”

It was 95 degrees outside and 99% humidity.  Howie started pacing in the garage.

I sat.

“What are you doing?” I asked.

“I’M THINKING!”

Finally it comes out. “I had to finish a worksheet at camp before I came home but I had already done it in school before and I didn’t want to do it and they made me.”

“Did you tell them that?”

“NO! I JUST IGNORED THEM!”

He paced some more.

Somehow, I convinced him to come inside.  More stomping.

He sat down in his beloved green chair.  His face was still frowning.

From the other room, we could hear Lewis working with his home ABA therapist.  They were playing a game, talking quietly.

Howie looked at me.  He wiped away a tear.

Leaning over, he whispered in my ear.

“I’m going to go in there and put on a happy face.  Even though I’m not.”

I was stunned.

“Oh…okay.” I stuttered back.

And he did.

I followed him into the room.  He looked at Lewis’ therapist, gave her a big smile, and said “Hi!”

“Hi Howie!  How was your day?”

“Good!”

She looked at him.  “You look happy.  Are you happy?”

“Yes,” he said.  “I am.”

He turned to me.

Gave me a little smile.

He turned back to them.  “Can I play the game too?”

“Of course!”

Wiping away a tear myself, I sat down.

The three of them played the game.  Incident free.

Howie sat on my lap when the game was over.

I whispered in his ear.

“I’m very proud of you.”

“I did it,” he whispered back. “I fooled them.”

Maybe I will take him with me to Vegas after all.

Can’t read my, can’t read my
No he can’t read my poker face
(She’s got to love nobody)
Can’t read my, can’t read my
No he can’t read my poker face
(She’s got to love nobody)” – Poker Face by Lady Gaga

I went out to greet the mini-bus this afternoon.  Howie was returning home from his second day of his Extended School Year program.

I stepped up into the bus.  Mrs. S, the bus monitor, looked at me.

“I have to tell you…”

Gulp.  Waiting for shoe to drop.

“Howie has been doing an amazing job on the bus these past two days.  It’s awesome.”

Howie’s whole body puffed up with pride.  Mrs. S said it looked like he grew an inch in that very moment.

“Inside and out,” I said.

He came bouncing off the bus with a huge smile.

“Did that make you feel good when Mrs. S said that?” I asked.

“Yes.  It did.”

And then the smile got bigger.

When you’re smiling…

“Now take some silly ones of me!”

Who could say no?

“I’m going to move fast to make it blurry!”

“Now I’m a tiger!”

And we went happily into the house.

I’m not going to focus on the fact that his log sheet said he had a hard time at the program today and had to be removed.  And I’m not even going to think about the three times he hit his home therapist today because she asked him to clean up. In this moment…it’s just about that smile and the pride it represents.

And right now, that’s enough for me.

When you’re smiling
When you’re smiling
The whole world smiles with you

When you’re laughing
When you’re laughing
The sun comes shining through” – When You’re Smiling by Louis Armstrong

It’s the first night of the last day of school.

Howie’s laying in my bed in the dark, watching a show.  I’m working on the computer.

“Mom? What age will I go back to Miss P’s class?”

Miss P is – was – his kindergarten teacher.

“You won’t, sweetie.” I replied without turning around. “She only teaches kindergarten and you won’t be in kindergarten again.”

I go back to working.

Five minutes later, I hear quiet crying.

Sobbing.

My kid does not sob. He cries – loud, shrieking, angry cries. But not like this.

I turn around.  Howie is crying into his pillow.

“What is it?  What is wrong?”

“I forgot to move my chair to first grade.  I can’t be in first grade without my chair.”  More body shaking sobs.

I crawl into bed next to him.  He’s hiding his face in the blankets.

“Your chair?  Oh…your special chair.  The one with the therabands and the velcro?”

About two months ago, the amazing school OT was revamping Howie’s sensory diet for his classroom.  She put therabands around the bottom of his chair so he could kick his legs while doing his work and not hit anyone.  She put velcro on the sides of his chair and on his desk so he could rub his hands on it for extra sensory input.  That chair made all the difference for him these last weeks of school.  He knew that chair helped him.

And in his mind, the chair was staying put in kindergarten when he moved to a new classroom.

“I promise you we’ll get your chair and make sure it’s in your classroom for first grade.  I will even make sure it’s there for your summer camp too.  Okay?  Don’t worry.  It will be there for you.”

But then…he went on.

Because it wasn’t just about the chair.

“Why do I have to go to another classroom with a new teacher?  I will really miss Miss P. Will Mrs. S be with me in first grade?”

Mrs. S was one of his aides this year.  She really understood him and was with him today on his last day.

“And my friends!  What about my friends?  I will never see them again.”

I assured him that he would.  That we could have playdates over the summer to make sure he saw them.

“But it won’t be every Monday, Tuesday, Wednesday, Thursday and Friday.”

Can I just pause for a moment? 

In the midst of all this anxiety…as my son is shaking with tears…I see progress. 

It’s the double edged sword of the special needs mom. 

With this painthe first glimmer all year of connection to peers.  The first time ever expressing and understanding that loss of connection.

I pulled him in close and told him that we’d make sure he’d see his friends as much as possible.

The crying and the questions continued.

“How come none of my friends are with me in my new class?”

I had no good answer for that one, not one that was easily shared.  Howie is going into a 1st/2nd grade combined class so there were only so many spots.  The other parents would have had to first choose the mixed-level class to start, and then gender and all sorts of other things factor into placement.  Plus, he had a hard time with the dynamic of his kindergarten class so having new kids around him made sense.  Or so I thought.

“What if I can’t remember all the new kids’ names?”

At this point, I had sent Tim a quick text to come upstairs.  I was about to start sobbing myself.

“Mom.  I am scared to go to first grade.”

Pausing again to mark the moment.  We have hit so many emotions in the past but never this one.  Expressed so appropriately and so…painfully. 

We talked through the fear.  I told him that every year I was afraid to go to school but once I walked into the classroom I was fine.

Tim suggested that we get a class list and meet some of the other kids over the summer so they weren’t new faces in August.

Howie sat up straight.  He turned his hand into a talking “puppet” and said, in the most age appropriate mocking voice:

“Hi.  I’m Howie.  I’m afraid of first grade.”

And he slumped back into the pillow and starting sobbing again.

Progress and pain.

Somehow, Tim got him laughing a few minutes later and he finally calmed down.  He smashed his body into mine and asked if I could hug him.

“I love you, sweetie.” I whispered as I do every night.

Every night I get the same “I love you too” scripted response back.

Tonight I got “The same back to you.”

I’m not going to lie.  I am wracked with guilt and joy tonight.  The guilt, well, that’s obvious.  All year long all I saw were the struggles.  It was all anyone else saw too.  He never mentioned the connections he was making with his teachers or friends, even when asked.  I figured many of the “friendships” written about in his communication log were contrived social situations so he could practice his skills.  I had asked about playdates but he never mentioned any particular friend.  What I never realized was that he was connected to them all – any one could have been a potential good friend. For the past few weeks I have been so focused on just ending this school year and starting fresh.  I couldn’t stand to read the communication log one more time.  I couldn’t bear one more meeting, one more data sheet of tantrums, one more phone call from the school.  All about me.  Not once did I stop to think that my little guy would want or need something different.

The joy?  The complete and total appropriateness of his reaction.  The clarity of his expression of his feelings.  His need to talk about it.  The fact that it was about his chair but it wasn’t about the chair.  It was the worry about missing the things – and people – that helped him the most. 

I sent an email tonight to his team at school requesting that his chair be moved into a special room so it would be there for his summer program, and asking if it was possible for him to help move his chair into his new classroom before school started again.

The subject line of the email was “Just One More Thing…”

It’s always just one more thing.

Progress and Pain.

 

An open letter to the woman who subbed in my son’s classroom…

Dear Substitute-

You caught me off guard today.

I was running late for a meeting when you stopped me on the sidewalk outside of the school.

When you asked me how Howie was doing, I thought it was just small talk at first.

So I replied with my usual “fine, thank you.”  Because it’s true.  For the most part.

But then you went on.  Sharing that you had been in his classroom several times this year, working as an aide.

I knew that, of course.  Small town and all.  And we’ve known each other from the neighborhood for a while so I recognized your name as a sub.

“That Howie,” you said.  “He really is…um…he really is his own person isn’t he?”

Suddenly it wasn’t small talk anymore for me.

You stopped me cold.

In a split second, a thousand thoughts flew threw my brain.  I truly wanted to believe you meant this in a nice way.  I really did.

And I wanted to believe that you know about my son’s challenges, especially in the classroom.  That before you went in as an aide you were told about his autism and sensory issues and what to expect.  I know the school staff would have shared this with you.

But it was the tone of your words that told me this wasn’t a compliment.

I stared at you for a moment.

I wanted to tell you what a hard year this has been for my little boy.  That the transition to kindergarten was not an easy one and he never recovered until just last month.  I wanted to share how his autism presents itself in the classroom and that sometimes things are just so hard for him that he lashes out at whomever is next to him.  I wanted to apologize for anything and everything he might have said or done in your presence.  I wanted you to know that he can’t help it.  He doesn’t mean it.

And then I wanted to scream at you with a what the hell are you talking about? What are you trying to say?  That my son is difficult?  Frustrating?  Hard to work with?  This is my amazing little guy!  You don’t know.  How could you know? Do you see what he goes through every damn day just to sit in that room? You, with your perfect children, sitting in judgement of my child?  How dare you?

I wanted to tell you how proud I am of him for just surviving this year.

But instead

I simply said,

“Yes. He is his own person, isn’t he.  I’m pretty proud of that.”

I turned around.

I walked into the school.

You didn’t see the tears well up in my eyes.

But you did see that I held my head up high.

I will continue to teach my sons – all three of them – that it is okay to “be your own person”.

I hope your daughters are their own people too.

However..

Forgive me if I don’t ever stop for small talk with you again.

Whether I’m right or whether I’m wrong
Whether I find a place in this world or never belong
I gotta be me, I’ve gotta be me
What else can I be but what I am

I want to live, not merely survive
And I won’t give up this dream
Of life that keeps me alive
I gotta be me, I gotta be me
The dream that I see makes me what I am.” – I’ve Gotta Be Me by Sammy Davis, Jr.

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