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.

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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

 

Somebody Come And Play

So I almost said no.

I’m pretty gun shy when it comes to blogging events, especially ones for my kids. My social anxiety spikes and my nervousness about their behavior and their sensory needs and their everything else usually turns into a “thanks but no thanks” email back to the event planners.

But when I got the message about a PBS Kids event in Boston at WGBH, I knew I couldn’t turn it down.  It was about their new initiative called “It All Adds Up“, designed to bring math and literacy skills into homes all over the world through their online programming and apps.

This is an event made for my kids.

Still, I was nervous.  So nervous that I almost backed out.  The first half of the event had parents in one room hearing about the new programs while the kids were right next door doing activities, crafts, etc.  That can be just so unpredictable for Howie and Lewis.

So I sent this email:

Hi! It will just be two of my boys ages 7 and 4. I hope that is okay.

Just a heads up, my two boys are both on the autism spectrum.  They love math and science and all things PBS but they get nervous and a little overwhelmed in large groups and with characters in costume. As long as I can be nearby for them, they should be okay. But please let me know if you are uneasy about having them there.

Thank you!

Alysia

I hate sending that email.  Not because I am ashamed of my kids.  But I am always worried about the response back.

But being PBS, I guess I should have known it would be okay:

Thanks for the email Alysia. A Curious George character will be present at the event – greeting people at the door, and then coming out again at the end. You can definitely just walk past and I can let my colleague at the door know. There will be a time when the parents are in an adjoining room listening to a presentation while the kids are playing games and activities in the other room. Do you think that will be ok? We expect approx 30 kids and 20 adults.

We’d love for you to be there. I just want to be sure you have all the info about the event so you know what to expect. Let me know your thoughts and if there’s anything we can do to help.

That’s all I needed.  I could prep them for exactly what was going to happen.  And I had an exit strategy if needed.

So off we went.

We got on the highway around 10am, armed with munchkins and juice boxes. I usually turn on a movie or the radio for the boys but I didn’t want to be alone with my thoughts.

So we talked.

We laughed at the leprechaun hat that is the symbol for the Mass Pike.  We discussed what “Mass Pike” actually meant.  We counted the Jersey barriers along the side of the road and made believe we were racing the big trucks.  We squealed with delight as we went under the “cool hotel that makes a bridge over the highway”.

We shouted and pointed at the large building with the Word Girl animation on it.  I told them that was where we were going.

Their excitement was growing.  My anxiety was almost gone.

We bounded our way into the WGBH building and were immediately greeted by Curious George.  Lewis stood behind me.

Howie went right up to him and gave him a big high-five.

In the elevator, he turned to me and in an exaggerated whisper he said “that was just a guy in a costume, you know.”

I knew we’d be okay.

We entered the room to check in.  The boys got name tags with their names written in their favorite colors.  The room was filled with coloring pages, games, activities and kids.  A giant TV on the wall was showing Curious George.

A lovely young lady motioned for them to sit with her and play.  And they did.

My fears about the event now gone, I found a seat in the presentation room.

I shouldn’t have been surprised that PBS and the Corporation for Public Broadcasting were doing so much for kids in the area of math, science and literacy.  But the approach they are taking is truly remarkable.  By creating content online that complements their TV programming, they are engaging kids in a whole new way.  We learned about a new show called “Peg + Cat” which is all about math skills but taught in a humorous and approachable way. And written on a level that both kids and their parents can find interesting.  Example : a reference to turning up an amplifier to the number 11 – a slight nod to Spinal Tap that had me and my friend Jessica giggling.

What really got me though were the online games and apps targeted exactly at my kids.  Apps for Martha Speaks, Wild Kratts, Dinosaur Train and Cyberchase and games for Curious George. My kids’ shows.

When we left the presentation, we got to see the games and apps in action.

Howie is very new game phobic.  He is afraid of trying a new game or app because he is hyper-competitive and worried about losing.  “No, thank you.” was the response I got when I asked if we should try the new Curious George Bubble Pop game.

But Lewis?  Drawn to games like…like a kid who loves iPads and computer games.

Playing Curious George Bubble Pop. And yes, that’s a breadstick in his hand. We mutli-task.

The premise of the game is that when you see a bubble on the screen, you yell “Pop!”.  And it pops.  George gives a little squeal and counts the numbers of bubbles that have popped.

No mouse.  No keyboard.  And you don’t even need to say “pop”.  You can clap your hands or make any noise and the bubble pops on the screen.

It only took 10 bubbles popping before Howie joined in too.  For a few minutes, they were both yelling “POP!” at the tops of their lungs.  And each time Howie jumped up and down with delight.

Yelling POP! Because it’s okay to yell sometimes.

Instantly I saw the beauty of this game for kids like mine.  No fine motor control needed.  No speech.  And online for free.

This game teaches cause and effect, counting, and math skills without having to say a word or navigate a mouse or keyboard. All accessible anywhere on any computer with a microphone.

As my kids were yelling “POP!”, I made my way over to the woman representing PBS.

“I can’t thank you enough for this,” I said.  “This game is really perfect.  My two kids are on the autism spectrum and for them to be able to navigate a game flawlessly without specific words or the mouse is just incredible.”

There’s a chance that I caught her a little off guard.  But as she looked over at my kids smiling and jumping, I could see that she got it.  “Thank you,” she said. “That means a lot to us.”

Next, we made our way over to the Wild Kratts app on the iPad.  Howie got to show off his math skills as he fed the animals in the forest.  Lewis honed in on the Dinosaur Train app.

I had to drag them out of there.

I tweeted:  Going right to http://pbskidslab.org  when we get home #pbskidsaddsup

And we did.

That night, Howie and I were sitting on his bed before bedtime.  We were playing the Martha Speaks “Word Spinner” app that we had learned about that morning.  I have never seen him so engaged in an educational app before – laughing, smiling, waiting for his turn…excited for his turn.  Yesterday, he played it with his home therapist, squealing the same squeal of delight that I heard at the event.

Every time the WGBH logo comes up on the screen Howie says “WGBH!  We went there!”

I am so thankful I didn’t say no.

Update from 3:15pm : I went outside to get the mail. I came in and Howie and Lewis were playing the Martha Speaks “Word Spinner” app.  Together.  Taking turns.  Nicely.  Smiling.  This NEVER happens. This is huge.

Disclaimer note: We were given free app codes for Cyberchase 3D, two Martha Speaks apps, two Dinosaur Train apps and the Wild Kratts app.  Considering how much my kids love them, I would have spent the money anyway.  We were also shown another Curious George online game called Monkey Jump – another game where no speech, keyboard or mouse is used.  You jump and Curious George jumps.  All you need is a webcam.  Perfect for my kids.

“Somebody come and play
Somebody come and play today
Somebody come and smile the smiles
And sing the songs
It won’t take long
Somebody come and play today

Somebody come and play
Somebody come and play my way
Somebody come and rhyme the rhymes
And laugh the laughs
It won’t take time
Somebody come and play today” – Somebody Come And Play from Sesame Street

 

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.

 

Home

An letter to a friend who is having a second child evaluated for a diagnosis…

Dear Friend,

Come here and sit down.

You have a million things to do, I get that.  But please.  Have a seat.

I know you’re struggling.  I do.

I know making that call for an evaluation was hard.  Really really hard.  You can dismiss it but I know that it took everything you had to do it.

The first time you made that call for your older child it might not have been as tough.  Maybe your pediatrician suggested it or maybe the school did.  You didn’t know what questions you were going to be asked or how much paperwork you would need to fill out.  You didn’t know what the appointments were about or how many people would get involved.  All you knew then was that people were telling you something was different about your child.

This time, though, this time you know.  You know that it means hours of paperwork and interviews and testing for your little one.  You know what they will ask and how they will ask it, looking at every little milestone under a microscope and questioning every detail of your child’s development.

You think you can’t do this again.  You think you can’t hear the words again.  You think you can’t handle the hours and the logistics and the emotions.

But you can.

I know because I was there too.

It was about 18 months between diagnoses in our house.

It took me so long to pull the trigger on making the appointments for Lewis.  I would make the appointment and then cancel.  I would stare at the paperwork.  I spent so much time looking for “it” – the something that would be my sign that he was on the spectrum or not.  He was so different from Howie. Early intervention would come out three times before he was eligible for speech therapy.  And in the midst of it all we were working on Howie’s IEP and learning words like PECS and ABA and sensory diet.

The day after Lewis was diagnosed with PDD-NOS, I shared what I friend wrote to me:

“One on the spectrum is one. Two is two. I get that this is a watershed moment. But you know what to do now. You’re already doing it; it’s just a little more weight in your pack. You’ve got this. And you’ve got us.”

My friend, I say those words back to you.  One kid with a diagnosis is one.  Two is two.

You’ve got this.

I can say this now about 15 months after Lewis’ diagnosis.

The teacher meetings are the same.  Just times two.

The home therapy that was a part of our life with one is now a part of our life with two.

And our kids are thriving thanks to early intervention, great teachers and an incredible village of friends.

Lewis met almost every goal on his IEP this year.  And is meeting every goal in his home therapy.

My friend, I know you can do this.  I know what a great parent you are.

Things are different now.

That knowledge that made it so hard to make that phone call in the beginning is now your power.

You know that the journey isn’t so scary.

You know what to do.  You know what questions to ask.  You know who to call and where to turn and who has your back.

You know this road.

And you know you aren’t on it alone.

Never alone

(I encourage you to read Welcome to the Club again if you haven’t already.  It hits home with one child. But it means even more with two.)

 

“Hold on, to me as we go
As we roll down this unfamiliar road
And although this wave is stringing us along
Just know you’re not alone
Cause I’m going to make this place your home

Settle down, it’ll all be clear
Don’t pay no mind to the demons
They fill you with fear
The trouble it might drag you down
If you get lost, you can always be foundJust know you’re not alone
Cause I’m going to make this place your home” – Home by Phillip Phillips

 

The Ballad of SenseAbility Gym

Yes, I know that’s not a real song.

But I had no other way to title this.  It’s an original title for a brand new project of mine.

It’s perhaps the most important thing I’ve done since marrying my husband and starting my incredible family.

My very dear friend and I are opening a parent-led sensory gym.  As a non-profit. For kids just like mine.

We’re calling it “SenseAbility Gym: A Sensory Gym for Sensational Kids“.

But first…the back story.

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This winter, my friend and I took our sons to an open sensory gym in sponsored by the Autism Alliance of Metrowest.  We watched our boys run around and play and smile.  The equipment was familiar to the boys from their OT sessions at school so they knew just how to use it.  As a bonus, my friend and I got to actually talk to one another.  A few weeks later, we attended another sensory open gym, again sponsored by the Autism Alliance, this time at a private OT clinic.  Again, the boys were in heaven.  Jumping into ball pits, climbing through the squeeze machine, swinging around on the therapeutic swings.  And again, we got to talk.  Mostly about how we wished there was something like this open near us all year round.

I wrote about our experience there in my blog.  I talked about how welcoming it was.  How one child kept telling everyone it was a leap year and reciting the other years when a leap year had occurred.  How Howie made a new friend there who loved to spin around in the closed up swing as much as he did.  How happy our kids were.  And that no one there batted an eye if a kid was upset, or melting down, or jumping up and down, or making noises, or making eye contact or not.  It was pure acceptance and love for our kids.

Such a happy face!

My husband Tim read it, saw Howie’s happy face in the pictures, and casually said “You should open a place like that.”

I’m not sure he actually meant it. But I started to cry.  Because I knew we had to open a place like that.

The next night, I went out with a few friends for drinks.  All autism moms. I told them what Tim said.  They said we had to do it.

The next morning, I went for a walk with another friend.  She’s been my friend since our oldest boys were in preschool together. I told her to talk me out of it.  She talked me more into it.  And handed me a book on how to start a non-profit in Massachusetts.

The more we talked to people: parents of kids with special needs, parents of kids without special needs, therapists, teachers, you name it.   Not one person told us it was a bad idea.  In fact, they all said we had to do this.

We met with a business consultant to organize our thoughts.  We relied on people in our community who took their personal time to sit with us and tell us what we needed to do to make this work.  We sent out a survey and wrote a business plan.  We asked my cousin to design our website and our incredible logo. We filed with the state as a nonprofit, with the attorney general’s office as a public charity, and received our 501(c)3 status from the IRS faster than anyone said it would happen.

And so SenseAbility Gym, Incorporated was born.

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So what are we?  What are we trying to do? And why am I writing about this here?

SenseAbility Gym’s mission is to provide a parent-led sensory gym, giving children with special needs a safe, fun, indoor area where they can play and accommodate their sensory needs.  This will be the first of its kind in the Metrowest area of Massachusetts.  We’re modeling our gym after an incredibly successful sensory gym in Brooklyn, NY.

We believe in the fact that all children deserve access to the types of therapeutic equipment used in their schools and their private occupational therapy clinics and we believe that parents need to interact with their children to learn what helps their child “feel better” and have fun. There are four important components to our mission.

• Community: SenseAbility Gym wants its members to feel welcome, and part of the special needs community.
• Safe Sensory Play: SenseAbility Gym wants parents of children with special needs to feel there is a safe place to bring their children for fun, exercise and sensory support.
• Acceptance: SenseAbility Gym will have an environment that recognizes that all special needs children are different and that all learning styles, personalities, and abilities are welcome.
• Support: SenseAbility Gym will be a place where families of special needs children can go to meet other families who share the same struggles.

Through this blog, I’ve connected with special needs parents all over the country and the world.  The one common statement that most parents say is “I feel so alone.  My child is the only one that has these extra special needs. I have no one to turn to for support.”

My friend and I know how lucky we are to live where we do.  From the moment that we knew Howie needed extra help, we had people to help us.  Our pediatrician referred us to Early Intervention to get help for his sensory issues from an occupational therapist.  When he entered preschool, he was surrounded by a loving, caring, knowledge group of teachers and support staff who knew before we did what Howie needed.  And when he received his autism diagnosis, we were instantly supported by this team here in town to get him the services he needed.  And through that, he made friends.  And I made friends.  And without that…I don’t like to think about it.

We see the gym as a place not only for our kids and kids like ours to accommodate their sensory needs, but also as a place to build their social skills and interact with other children like them.  We see the gym as a place where moms and dads can interact with parents just like them.

As Howie told me the other night: “SenseAbility Gym is a place where kids can learn to get along.”

We see it as an another piece of the support team helping families know they are not alone.

**********

I’m going to get numerical here for a moment.  We know that as many as one in six children have sensory processing issues. That is from the SPD Foundation. The CDC reports that 5.4 million children between the ages of 4-17 have been diagnosed at some point in their lives with ADHD in 2007 and that number is rising.  We know that 1 in 88 children – 1 in every 54 boys – are diagnosed as on the autism spectrum.

Taking a small seven mile radius around our town – the distance that people in our survey said they would travel for a service like ours – we know we have the potential of connecting with over 400 families who could use the gym.  We’re guessing that people will travel farther and the actual number will be even higher.

That is over four hundred families that could finally connect and say “Me too.”

**********

And this is where you come in.

I need your help.  As a non-profit public charity, we are completely reliant on donations, grants, and our membership dues to stay open.  None of us are taking a salary.  All the money we raise goes right back into keeping the gym open and running: rent, electricity, equipment, furniture, insurance.

Our gym will be located in Hopedale, MA.  There will be one large open space with equipment like therapy swings, a scooter board ramp, a ball pit, and tunnels, balancing equipment and a squeeze machine.  We’ll have one quiet “sensory” room with crash pads and low lights and calming activities.  And one classroom space for us to hold social skills or life skills classes, or to be used as a sensory-friendly homework room for children who need that to get their work done. Families will be able to purchase memberships to access open gym times with their children.  In addition, we plan to offer sensory based group activities, and have the gym available for private therapists to use with children and their parent.

We would like to have our grand opening in January 2013.  To do that, we need $38,000 to open our doors.  That includes purchase of all the equipment and furniture for the gym.

We are actively pursuing local and national grants to help get us closer to that number.

I need you to tell people about us.  Maybe you know a family who has a child with special needs in our area who could benefit from a membership at the gym.  Maybe it’s your own family.  Maybe you work for a company that is generous with community giving.  Maybe you know children who need to raise money as a community service project and they would like to purchase a piece of equipment.

I need you – my friends and family – to help make this gym a reality.  Not just for my kids or my friend’s kids.

But for mom who told me at our town’s Day In The Park that her daughter needs a place like this.

For the parents sitting in an Early Intervention family group right now wondering where they could find a safe place to meet once their kids turn three.

For the dad who is desperately looking for a way to connect with his autistic son, but can’t afford the play equipment his child needs.

Every dollar donated goes to the gym and those families.

It’s a balancing act

**********

Last night, we held our first fundraiser in our town.  The above is the speech I gave to the packed house that came for food, wine, chocolate, coffee and conversation.  The room was filled with family and friends and strangers who are now friends.  The most amazing part was it was not all people with special needs children.  It was our community. It was teachers, parents, friends, therapists, and business leaders.  They came because they wanted to support something that will benefit everyone.

We had a “sensory table” manned by my son Gerry and his friend.  She’s an amazing young lady who, like my son, understands how much swings and fidgets and weighted blankets and headphones help their siblings “feel better”.

We raised a lot of money last night.  We’re just under 40% of our goal.

But we still need you.

Clicking HERE takes you right to our PayPal donation page.  We are a 501(c)3 organization and your donation is tax-deductible to the extent permitted by law.  Every dollar goes towards get our doors open.

I want to be able to come here in January and post pictures of our grand opening.  I cannot wait to see the smiling faces on the kids that come through.

And their parents.

On behalf of my friend and every family that this will help, thank you for reading.

To read the news story about our fundraiser, click HERE.

To read more about our plans, click HERE.

To make our dream a reality, click HERE.

 

Keep Holding On

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

 

Drive My Car

I almost lost my stuffing in the Hot Wheels suite talking about Howie. – a post to some friends on Friday afternoon.

It came up casually in conversation with a new friend I met at the BlogHer conference this week.  Jennifer told me that she was looking forward to checking out the Hot Wheels suite since her boys liked cars.

“Um…Hot Wheels Suite?” I asked, and turned wide-eyed to my friend (and most awesome roommate ever Kristin).

Hot Wheels, or more specifically Mattel, was a big sponsor of the conference.  And they had a full suite on the 42nd floor of the hotel to show off their new products.  There was no way I was missing that.

Friday after lunch, Kristin and I made our way up to the suite.

The marketing people showed off their products, including their new app game.  Dan, the marketing guy for Mattel, demonstrated how a special Hot Wheels car drives on top of the iPad and “races”.  You control the car through the race or you can have a leisurely drive through the city.

I could feel my eyes tear up a little.

I started to tell the marketing guy a little bit about Howie and his four year long obsession with Hot Wheels.  How those cars were our connection to him.  And how it was also our autism “red flag”. And then with the iPad – the device that helps him focus and learn and play without frustration…well, the thought of combining the two was just a little much for me.

We thanked him for his demonstration and turned to leave the suite.  That’s when I saw this and had to take a picture:

Yes. Yes we do.

**********

This afternoon, we were getting ready to go to Target to buy school supplies.  Lewis was holding my phone for me while I packed up some snacks.

“What does this say?”, he asked, pointing to my phone.

I had the “Real Moms Play Cars” sign as the background picture on the phone.  I told him what it said.

An hour later, we found ourselves in the Hot Wheels aisle of Target because…well, we always do.  Lewis was trying to convince me that he needed yet another car because…well, he always does.

I said no.  We had enough.

“It’s for you, Mom.” he said.

“But I don’t need a car.” I replied.

“Yes, you do.  ‘Real moms play cars.’ You need your car.”

How does one say no to that?  To a kid who just one year ago couldn’t speak more than two words at a time?

You don’t.  We came home with a new car for me and one for everyone else.

**********

Before I left the conference, I sent Dan the Mattel marketing guy this e-mail:

Dear Dan,

I think you are the person I met at the Hot Wheels suite at BlogHer12. You showed my friend and me the new iPad game and gave us the demonstration on the remote control car. I told you my two youngest sons were autistic. And you remembered my son liked green.

I have to tell you how Hot Wheels changed our lives. It became the vehicle, if you will, for communicating with my sons. It’s how their dad connected with them, how their older brother plays with them. And I had to learn how to play with them too.

So your “real moms play cars” sign meant so much. It has become my motto. If there’s any way I could get one of those signs , I would appreciate it forever.

**********

“Real Moms Play Cars.”

I get down on the floor. 

That may not mean much to other moms.

Howie chooses a car for me. 

But playing cars is the one way in to communicating with my boys.

Lewis drives his car over to me.

It’s how we connect.

He says “Hi, Mom’s car.”

It’s how we interact.

Howie says “Wanna race?” and whispers to me that he’ll let Lewis win.

It’s how we healed as a family.

Ready…set…go!

Hot Wheels.  Beat that!

“Baby you can drive my car
Yes I’m gonna be a star
Baby you can drive my car
And maybe I’ll love you” – Drive My Car by The Beatles

*this is one out of probably two or maybe three BlogHer posts*

**********

If you could, please check out my new project.  We’re opening a sensory gym for special needs children.  To open our doors, we need your help.  Please check out our website at SenseAbility Gym and donate safely through PayPal HERE

 

New York, New York

So I am stepping WAY WAY WAY out of my comfort zone.

Next week, I’m heading to New York City for the annual BlogHer conference.

It’s a three day conference celebrating all things blogging.  I’m heading down a day early for the pre-conference HealthMinder day, which will have specific special needs panels.

If you don’t know me, you may not know why this is feeling so out of my league.  I’m the one much happier behind a computer screen than in a crowd.  At a party, I’m hanging by the food and drink table or leaning up against a wall in the corner.  I prefer to stay quiet, unnoticed.  I get anxious and nervous at Costco, so giant conferences make me edgy.

But I just had to go to this one.  And I have four reasons why.

Reason #1: In addition to writing here I’m also the managing editor at two other blogging sites.  For over a year now, I’ve been a part of the amazing team at the SPD Blogger Network, a group blog for parents of children with sensory processing disorder.  The site has a special place in my heart.  SPD was Howie’s first diagnosis.  Two years ago, when I started to write my own personal blog here, I connected with Hartley Steiner at her blog.  She encouraged my writing and put my blog on her site.  When she founded the SPDBN, she asked me to be there to help.  And there I’ve stayed.  We’ve created a loving, supportive and understanding community there on the blog site and on our Facebook page.  It’s the place I come to when I’m feeling particularly low or incredibly proud.  Every story is shared with honesty and love.  I understand my son better because of the incredible people who write for us every day.

The SPDBN relies on posts from parents.  Each day we post a new story.  I’m going to BlogHer to meet other parents who share a similar journey and I hope I can convince them to come write for us.

(side note: I’ll be the one with the cute Otto the Octopus.  See photo below.  Made especially for me to take to BlogHer by the incredibly talented SPDBN team Karla from The Itsy Bitsy Spider.  Find Otto, find me.)

She made those other cute guys for my boys. I may snag one of them to take with me as well…

The other site I help manage is The Oxygen Mask Project.  It was started with my friend Shannon as a way for us to reclaim ourselves, reminding us that we need to take care of ourselves if we’re going to take care of our kids.  It started small.  We started tweeting with the #yearoftheoxygenmask, sharing what we had done for ourselves that day.  For me, it was drinking my coffee when it was hot.  And showering.  While to many that sounds stupid, for me just doing that was a challenge.  I was so busy getting people out the door to school/therapy/baseball/piano/therapy that there was never anytime for me.  I hit bottom.  And now we have 880+ Facebook friends and 52 posts from writers from all over the world.  And every day we’re talking about how we’re important too.

There will be a special panel at HealthMinder day called Overcoming Burnout: Replenishing Your Reserves.  I’m going to BlogHer because this is exactly what we’ve been talking about for six months.

Reason #2: Two of my favorite people are being honored at the special Voice of the Year.  I can’t wait to hear my friend Varda as a reader for the “Heart” nominated posts.  I expect there to be very few dry eyes in the house.

And I’m so thrilled that my friend Stimey was nominated as a Voice of the Year for her incredible post Not Even Wrong.  This post changed my life.  That’s not hyperbole.  I read it at a time when we were having tremendous struggles with Howie and school.  Her post about her son Jack changed EVERYTHING about how I viewed Howie’s school life, and made me step back and look at how we needed to teach him.  Because my perspective changed, I was better able to communicate with his team at school and we all turned things around.  I am forever grateful to Stimey for what she wrote.  I’m going to BlogHer to tell her in person.  Again.

Reason #3 goes with Reason #2: I’m going to be with friends.  Including friends I’ve never met.

And, yes, I know that probably only makes sense to the blogging/social media world.

The best example of this is how I met my BlogHer roommate, Kristin.

Last summer, my kids’ school opening was delayed a week due to Hurricane Irene. I was completely stuck for ideas on how to entertain them when they were supposed to be in their classrooms.  I whined about this on my blog’s Facebook page, and this angel named Kristin asked if I wanted to join her and her boys at their swim club.  We had never met, but had a mutual Facebook friend and had become friends that way.  I sent her a message saying simply YES!  We chatted via email and text, and there we were at her swim club for the whole day.  Our boys played and swam – sometimes together, sometimes doing their own thing.  And because we were both autism moms…well the rest is history.

We’ve only seen each other once since that day at the pool.  But when I decided to go to BlogHer, I asked Kristin if she’d go too.  In addition to her amazing blog, she’s also written for the SPDBN and The Oxygen Mask Project.  So now we’re taking the bus together down to the big city, and I’m hoping she’ll help me get out of the corner.

But this is what blogging has done for me.  In addition to the incredible “in real life” friends I had, I’ve connected with a whole group of insanely smart, funny, snarky special needs parents who have taught me so much just through their words.  I’ve been lucky enough to meet some of them before and now count them as my closest friends.

I can’t wait to meet this friend, and this friend, and this friend, and this friend, and this friend.  I’ve been reading their work for so long and now I get to put a face with the words.

And I’m hoping a few other friends will come join me for a drink or two.  Or three..

I’m going to BlogHer to connect with the people who have taught me so much.

Reason #4: I need to get away.

I’m not going to lie.  This has been a long long summer.  I need a little break. In addition to the usual summer things, I’ve started a new project and it’s been a lot of work to get off the ground.  I’m stressed.  And I’m taking it out on the kids.

I need a break to sleep.  And shower.  And pee alone.

I have to get some time to regroup.  To feel better.  To breathe.  I’m going to BlogHer to find myself again.

I’m terrified of the three days away from my family.  I’ve never been gone this long.  But I know Tim and the boys will be fine.  We have an incredible support system around us here who will help if (when?) things get sticky.  I will have a social story ready for the boys so they are prepared too.

And when I come back I will be ready to take it all on again.

I’m stepping out of my comfort zone and going to BlogHer’12.  See you there.

“Start spreading the news,
I’m leaving today.
I want to be a part of it –
New York, New York.” – New York, New York by Frank Sinatra

 

All Summer Long

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 pain…the 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.