Take It To The Limit

Two different kids.  Two different scenarios.

Same internal parental struggle.

**********

Part One

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

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

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

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

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

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

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

He just couldn’t do it.

Until…

He did it.

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

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

**********

Part Two

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

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

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

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

He protested.  A lot.

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

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

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

Until…

He did it.

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

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

**********

Herein lies the struggle.

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

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

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

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

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

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

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

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

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

I need to figure out where my limit is too.

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

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

 

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.

 

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.

**********

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.

 

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.

**********

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.

**********

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.

 

Hot Wheels…Beat That!

I’m incredibly honored to be on the Modern Mom site today.  They have teamed up with Hot Wheels to promote their Take 10 challenge:

There’s one thing that all moms can agree on: kids grow up way too quickly. Before we know it they are out of diapers, heading to kindergarten and off to college. We can’t stop time, but we can take 10. Turn off your iPhone, turn on your imagination and give your child 10 minutes of your undivided attention. Hot Wheels^® is here to get you started.

I am sharing our love of all things Hot Wheels over there (including our homemade Halloween Hot Wheels costume), and how those little metal cars changed our lives.  I am grateful to Rachel at Mattel for the opportunity to tell our story.

Please click HERE for “Driving A Deeper Conversation“