Take It To The Limit

Two different kids.  Two different scenarios.

Same internal parental struggle.

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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.

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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

 

I Got A Name

I watch him carefully as he speeds by me.

His training wheels clank-clank as they hit the uneven pavement in our driveway.

He’s doing laps on a track he made out of chalk.  One big circle.

Around and around and around.

I’m sitting in my winter coat on a beach chair on our lawn.  It’s the first nice day of spring but there’s still a chill in the air. His brothers have gone in for the day but Howie refused.

“I’m not done”, he said.

So neither was I.

Understanding

I think about Autism Awareness Month.  Or Autism Acceptance Month.  Or Autism Awareness/Acceptance Month.

I think about the posts I have written in the past.  What it mean to us to “Light It Up Blue“.  Why I share what I share.

I think about what the words awareness and acceptance really mean.  I mean really really mean. And whose awareness?  Whose acceptance?

Globally? Nationally? In my town?

Awareness

Howie stops for a moment and gets off his bike.  He surveys the track.  I can see it in his eyes that something is missing.  Something about the track is not quite right.

I can’t see it.  To me, it is perfect.  The lines may not be straight, the arrows showing the right path are jagged.

But still…perfect.

His eyes see things I can’t.  His mind works differently than mine.  He can create elaborate pictures and structures in his head and put them together with Hot Wheels Tracks, Legos, blocks and chalk.  I can’t draw anything but a stick figure.  I can sit through a two hour lecture on the history of New York’s geography.  He can’t sit through a five minute lesson on contractions.

I am aware of this.  But is he?

Howie adds one more line to the track and colors it in.  He hops back on his bike and the circles begin again.

Acceptance

I know the statistics.  The 1 in 88 or 1 in 50.  Or in my house…the 2 out of 3.

The answer to the question of whose awareness and whose acceptance is easy for me this year.

It’s Howie.

We’ve started talking about how his brain works differently than others sometimes.  How some things are harder for him at school and somethings are easier.  We’ve talked about sensory overload and calming our engines and using his sensory toolbox to help his body feel better.

But…we’ve never given it a name.

Up to this point, we have been his advocate.  I have piles of papers and notes and spreadsheets and doctors’ reports that speak for him.

It’s time to teach him how to speak for himself.  How to advocate for what he needs and why.  Not to escape the hard work or to use as an excuse.  But to truly understand what makes him successful.  What makes things challenging.

So if a kid makes fun of him for flapping his arms up and down when he’s excited, he can say why he does it.  Or if an adult makes him look at them in the eye he can explain why that’s hard for him. Or when he creates the most incredible stories and drawings he can explain why his brain works the way it does.

Or when he just needs to ride his bike around in circles for an hour before dinner he knows why it makes him feel happy.

His older brother Gerry has accepted it.  Tim and I have too.  We can share our version of Autism Acceptance Month as parents and siblings.

But the understanding/awareness/acceptance needs to come from within too.  From Howie himself.

We will light our house up blue and wear our blue clothes tomorrow.

And slowly…in our way and in our time…Howie will understand that we’re doing it for him and with him and his younger brother.

Awareness and acceptance will begin at home.

And then Howie can be the one to share it with others.

Free

He zips by me again for the 100th time.  The early spring wind is starting to kick up and I start to shiver.

I ask him to pause for a moment so I can take a picture of the first bike ride of 2013.

He stops, smiles, and poses.

“What are you thinking about?” I ask.

“I’m thinking about being me,” he replies.

And he speeds away.  The clank-clank of the training wheels follow behind.

Awareness.  Acceptance. Understanding.

Starting locally.  So he can share globally.

“Moving me down the highway
Rolling me down the highway
Moving ahead so life won’t pass me by

And I’m gonna go there free

Like the fool I am and I’ll always be
I’ve got a dream, I’ve got a dream
They can change their minds but they can’t change me
I’ve got a dream, I’ve got a dream
Well, I know I can share it if you want me to
If you’re going my way, I’ll go with you

Moving me down the highway
Rolling me down the highway
Moving ahead so life won’t pass me by
Moving me down the highway
Rolling me down the highway
Moving ahead so life won’t pass me by.” I Got A Name by Jim Croce

 

The Sun Will Come Out…Tomorrow

I have had so much to write about and no time to do it.

But I had to share this.

I took all three boys to see a local production of the play “Annie”.

“when I’m stuck with a day that’s gray and lonely…”

And we were able to go thanks to the incredible accommodations made by the Open Door Theater and the Autism Alliance of Metrowest.  They made it an autism-friendly show.

Which made it a family friendly show for us.

Read my review HERE at the Massmoms.com section of the Worcester Telegram.  And see why this experience meant so much to me.

 

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

 

Say You, Say Me at the SPD Blogger Network

My son’s sensory issues are well documented here.

But what about my own?

I’m exploring that at the SPD Blogger Network today.  Come over and read: Say You, Say Me.

And while you’re there, click around.  There are some amazing essays and great do-it-yourself projects to check out.  And maybe you’ll find a moment to write something too?  (I am the editor there…I have some pull…)

Click HERE for the SPD Blogger Network.

 

Hold My Hand

Dentist appointment today for Howie.

Just the thought sends shivers through me.  Past appointments have gone very well (at this dentist anyway…we won’t talk about our previous dentist who refused to let me in the room with him, even when he was screaming and crying…moving on…) but you just never know, right?

I usually take the kids separately but this time I had Lewis with me too as an observer.

There were a million ways for this to go bad.

After a failed attempt at x-rays (again), the hygienist asked Howie to lie down so she could clean his teeth.

This had never been a problem spot in the past but for some reason today Howie refused.

I went into full alert knowing that at any moment we could be completely done here, which would mean completely done with the dentist for a long time.

“Can you sit him up a bit?  Howie, you need to lie down just a little longer so she can make your teeth sparkle. Want me to hold your hand?”

Howie sat up and looked at Lewis.

“I want Lewis to sit with me and hold my hand.”

And so…

He did.

“Hold my hand
Want you to hold my hand
Hold my hand
Ill take you to a place where you can be
Hold my hand
Anything you wanna be because
I wanna love you the best that, the best that I can.” – Hold My Hand by Hootie and The Blowfish

 

Rock The Vote for SenseAbility Gym

My friends.

Just when you thought you were all done with voting for a while…

Now I need your vote.

SenseAbility Gym, the sensory gym that we are opening in Massachusetts, is up for a chance at a $25,000 grant from FedEx.  Businesses from all over the country are competing for this money in an online contest.

Here’s what we wrote:

SenseAbility Gym was established in May of 2012 as a sensory gym for special needs kids. As moms of children with autism, we have found that there are a couple occupational therapy centers in the area that occasionally offer public open gym time, but there is nothing in the area that provides the year round open gym services. With the autism rate rising to 1 in 88 children, we knew many special needs families needed a place for their children to play safely and find support and acceptance.

We’re a non-profit relying on donations, grants and fees paid by families who will use our gym. There is no other business like ours in central Massachusetts that provides the services that we will. We believe that children deserve access to the equipment used in their schools and therapy clinics. This will be a place where parents and children can go to socialize with other families with similar challenges. Our community needs this grant to get our doors open for these families and stay open.

The $25,000 grant will go directly into the programming and operation of the gym. We need specific therapeutic equipment for the gym that is expensive (things like therapy swings and safety mats). We are also offering specialized classes for kids in social skills and life skills and the money will go towards offering those at reduced rates. This grant will allow us to use other private donations for direct operating costs, giving us the rest of the money we need to open to the gym for families.

We need your vote today.  And every day until November 24th.

Click HERE to vote directly.

Click HERE to join our Facebook event page for information and reminders to vote.

Click HERE to make a donation to our gym.

On behalf of all the kids in our community who will benefit from this, we thank you.

 

Love And Understanding

There are times when I realize that my oldest knows too much.

Like the other day when Howie was bouncing off the walls after school and Gerry asked me if he had had a good day at school.  When I answered “Yes” he replied with “I could tell.  He held it together all day at school and is letting it go now at home where it’s safe.”

Yeah...

And then there was tonight.

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I was working on dinner.  We had just received the call that school was cancelled for tomorrow due to the hurricane.

Gerry was on the couch about to start a game on the Playstation.  Howie was rocking back and forth in his beloved green chair right next to the TV.

The verbal stimming had started.  For Howie, this is his “silly words”.  He yells out a string of nonsense words while he sits in the chair.

For the sensory avoiders in our house (my husband, Gerry and myself), the sounds are our trigger.

I’ve worked hard with Howie to remind him that he can make his silly words but he needs to either do it quietly or in another room if someone is trying to watch a show or play a game.

Many times, this scene ends with Gerry yelling at Howie to stop.  Conflicting sensory overloads.

Gerry started. “Hey Howie!”

I braced myself.

“Hey Howie.  I’m about to start my game.  If you have silly words, can you let them all out now before I start a new level?”

I froze.

“Okay,” came the answer.  Followed by a thirty second long string of loud sounds and words.

“I’m done.”

“Thank you.”  And Gerry started his game.

I still didn’t move.

About five minutes in, Howie looked at Gerry and said “Wait!  I have more.”

Gerry paused his game.  Howie let another string of sounds and words out.  Then stopped.

“I’m good.”

Gerry turned to Howie. “Thank you for warning me.  I appreciate it.”

He glanced over at me.

I mouthed “Thank you.”

And game playing started again.

**********

I know I ask a lot of Gerry.  And a lot of what I ask is conflicting and confusing.  I ask him to understand his brother and tolerate his behaviors, yet I reprimand him when he steps into the role of parent.  I want him to know why his brothers do what they do, but then ask him to do things that go against his own sensory sensitivities.

My kid takes on more than he should and yet I need him to.

Tonight, he showed acceptance and understanding.  And in the most loving way possible.

His way.

My boys in pink. For breast cancer awareness day at school. Gerry told Howie that his tie was “awesome”. I think they both are pretty cool kids.

“Not enough love and understanding
We could use some love to ease these troubled times
Not enough love and understanding
Why, oh why?

We need some understandin’
We need a little more love
Some love and understandin‘” – Love and Understanding by Cher

 

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

 

Don’t Speak

I wrote today’s SPD Blogger Network post on three hours sleep.

We play sensory detective a lot in our house.  Last night was no exception.

Come read Don’t Speak over at the SPDBN and let me know what you think is going on in our home.

Here’s a hint.  It has something to do with this:

ah…hunger. Or not.