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

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

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

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

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

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

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

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

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

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

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

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

4) development of self-advocacy skills

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

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

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

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

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

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

Now I know.

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

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

It was time to put all that into writing.

What is my vision for my child?

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

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

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

By being himself.

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

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

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”.

Image

“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.

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

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

Hot Wheels and Storyland.

For two and half years, that’s all we hear from Howie.   All he talks about are Hot Wheels cars and Storyland amusement park in New Hampshire.

I’ve been thinking a lot about his obsession with these two things lately.  Lewis, our two year old, is currently fascinated by monster trucks.  He carries them everywhere, even to sleep.  He races them around the house and smashes them into each other.  He begs Tim to play the Monster Jam game on the Wii, and then picks out the truck for him to use in the game.  It’s even helped him to start talking.  He knows all the trucks’ names and it has slowly evolved from something completely unintelligible to “brwn mo mutt” for the brown Monster Mutt truck and “Max D!” for Maximum Destruction.  When Tim is finished with the game, he’ll ask for “mo-monstr-jam?” (all one word).   Sometimes, those words are just music to my ears.

My kids have always had their “thing” that was their obsession.  With Lewis it’s the monster trucks, and with Gerry we’ve been through everything from Thomas the Tank Engine to Playmobils to Legos.  He’s currently stuck in all things Star Wars.  And in a sense we help feed into those obsessions.  We joke that every year there’s a theme for birthday presents for the boys – last year it was Curious George for Lewis and this year Monster Jam.  Same with Gerry.  Each year there’s an obsession, but each year it’s something different.

Not for Howie.  It has been Hot Wheels and Storyland.  Always.  Never changing.

It’s led me to have a love/hate relationship with those two things.  I’m pretty sure it’s because it’s how we first saw those red flags of autism.

Let me start with Storyland.  We’ve been going there for years, ever since Gerry was three and before Howie was born.  Yes, Gerry loved it there – the place is amazing and designed for kids ages 1-10.  But he didn’t talk about it all the time.  The year we went with Howie when he was two, it was all he could talk about.  He studied the map like it was the Bible.  He knew where every ride was and which ones he wanted to go on, and which ones he was going to avoid.  From June 2008 to now, he asks us constantly to go back.

I’ll admit I use it to my advantage.  I told him to read it on the toilet when we were toilet training because I knew he would sit longer.  When I needed him to calm down, I’d spread it out on the floor, point out the “Flying Shoes” ride on the map, and I knew I’d have a good 10 minutes to clean up, check my e-mail, or make some coffee.  I tried to use it as a way to show the changing seasons, as in “we can’t go to Storyland now because there’s snow on the ground, but when the snow is gone, we can go”. I didn’t bet on the lack of snow last year in New England, so the lesson then was lost.

The obsession with Storyland wouldn’t be enough of a red flag on its own if it wasn’t also accompanied by the Hot Wheels car craze.  With three boys, our house is covered in vehicles.  We have hundreds of Hot Wheels cars.  We first started collecting them when Gerry was little, used as a incentive for toilet training.  Somewhere around 18 months, Howie became attached to the cars and never let go.  It’s all he ever wanted to play with.  And because he would sit for long periods of time with them, lining them up and watching their wheels move back and forth, I let him.  Just like with the Storyland map, it was the only way I could get anything done.  I’d encourage it.

It wasn’t until our meeting with the developmental pediatrician last year that I realized this was a “sign”.  A flag.  Howie rolled a car back and forth on her desk for 10 minutes while she talked to me.  I didn’t even notice that he was doing it.  I did notice her eyes watching him the whole time.  When she told me later that this was his “stimming”, I was floored.

All of this is making me watch Lewis like a hawk with these monster trucks.  I panic slightly when he lines them up on the rug, then breathe when he pulls them out of line immediately to race around the rug.  I feel my stomach go into knots when I catch him lying on the floor watching the wheels move, then relax when he leaves the truck there to go play with something else.  I watch for the long extended meltdowns when he can’t find a truck, and wonder if he’ll get mired in all things Monster Jam.  So far, it’s not the same.  Lewis can easily move from playing with the monster trucks to serving me tea from his pretend kitchen to demanding to hear more music from the Glee soundtracks.  That last one I’ll indulge at any time.

But not Howie.  It’s still all about the Hot Wheels and Storyland.  Just yesterday he asked me if I could open up Storyland so we could go.   And for Hanukkah, we got him a special Hot Wheels backpack that opens up into a racetrack mat.  He packed it full of his favorite 50 or so cars to “save to race in the basement”.  We don’t have a finished basement.  It’s just something he says.

I don’t know if it’s right to continue to feed his obsession or not.  All I know is that he loves those cars.  And Storyland.  In a world that can be so difficult for him, is it wrong for us to deny him the things that make him feel…happy?

Time to go.  Two more nights of Hanukkah and I have a few more monster trucks, Hot Wheels cars and Star Wars figures to wrap.

You are an obsession
I cannot sleep
I am your possession
Unopened at your feet
There’s no balance
No equality
Be still I will not accept defeat” – Obsession by Animotion

Happy Hanukkah!

I have a little dreidel over at Hartley’s Life With 3 Boys today!  I’m talking about celebrating the eight nights of Hanukkah with all of our eight senses.  Yeah, that’s right.  I said EIGHT senses.  Come read and you’ll see what I’m talking about…

plus one!

Click Here for I Have A Little Dreidel

“I think I like being at school better than being at home.”

Those were the words out of my 8 year old Gerry’s mouth the other night.  I was wrestling with his younger brothers, getting them ready for the shower, when he tossed that bomb out at me.

It wouldn’t have been such a big deal, except for the fact that he is usually complaining about how much he hates school and wishes he could just stay home.  So this…this was a total twist.

But not a surprise.

I’ve waited a while to write about it, suffering some from writer’s block because the emotions and tears get in the way.  However, this week I’ve been reading A Diary Of A Mom’s spotlight on siblings and her amazing stories of her two daughters have reminded me that I need to put my spotlight back on Gerry.  The good, the bad and the ugly.

But I couldn’t get past the empty page – I couldn’t figure out how to put the right words down.

So I got some advice from an amazing new friend : “Start in the middle.  Don’t look for a beginning.  Don’t worry about structure.  Start with what hurts.  Then write.”

What I said back was this: “You’re right, of course. Except when it comes to watching my oldest struggle, it all hurts. It’s weird, I can write fairly easily about Howie. Watching him struggle with what he does is painful, but for some reason it doesn’t hit my core of motherhood like it does when I write about what a hard time my 8 yr old is having lately. Maybe because I have come to expect things to be hard for my 4 yr old. I just don’t know how to reach Gerry at all.”

I guess I’ll start with that.

In the past month or so, we’ve seen quite a change in Gerry’s behavior at home.  I hate to even write that.   First, he’s a good kid.  An AMAZING kid.  I’ve written so much about him before – he’s the kind of kid that parents want their kids to be friends with.  I can trust him to know right from wrong.  He’s an excellent student and continues to amaze his teachers with his ability to soak up information and his desire to learn more.  He is wise beyond his years and can carry on conversations with his dad that I long to understand.  He is an incredible big brother, tolerant and understanding and patient.

Usually.  Lately, however, not so much.

He is becoming increasingly less tolerant of Howie and his behaviors.  In the past, he’s been able to somewhat ignore the vocal stimming, the loud outbursts, the constant need for attention.  Gerry could play his Lego Star Wars game on the Wii and tune out the noise and chaos around him.  He can’t anymore.  Everything Howie does annoys him.  We’ve been eating in shifts for dinner because Gerry says the noise from Howie chewing with him mouth open is “so annoying I can’t hear myself think!!”

(The sensory avoider does not fall far from the sensory avoiding tree…)

We’ve done our best to control and help the situation.  We’ve told Howie that his babbling and outbursts can happen in our toy room area, but not near the TV or at the dinner table.  We’ve tried all sorts of bribes to get Howie to chew more quietly (I must say my husband’s recent “Jedi kids have to eat quietly in order to sneak up on the stormtroopers” worked well last night).  But we’ve also tried to explain to Gerry that we have to understand that there are things that Howie can’t control, and while we’re working helping him, we all have to be patient and understanding about it.

In addition, he’s worrying about Howie constantly.  He’s asked me many times about what kindergarten will look like for Howie – will he have an aide?  Will he take the bus or the van?  Who will help him?  The statement behind the question here is, of course, will it have to be him helping his brother?  Again, we’ve tried to explain to Gerry that it’s not his job to worry – that his dad and I will work it out with the school to make sure Howie is fine in kindergarten.

His response?  “I am the school.  This affects me.”

Of course, because he’s so wise beyond his years, we talk to him like he should understand.  Like he’s an adult.  But he’s not.  He’s still eight years old.

As his coping mechanism, Gerry spends a lot of time alone.  He does his homework alone up at Tim’s desk in our room.  He rides his bike outside alone.  He retreats to his safe spot – his room – to play with his Legos.  He reads alone, showers alone, watches TV alone.

It breaks my heart.  But it’s why his “I like school better than home” comment makes sense.  Can you blame him?

I’ve spent countless hours these past weeks trying to figure out why things are so different recently.  Was it the new school year?  Third grade and a new teacher and new friends have brought new stresses and pressure for Gerry.  And for the first time, he’s in a class with a few special needs students and their aides.  Is it the fact that he uses up all his strength, tolerance and understanding in the classroom and has none left for his brother?  Or is this just a “normal” sibling thing?  Has he just reached his breaking point, like we all do? All of the above?  None of the above?

Go ahead.  I know what you’re thinking.  Why didn’t I just ask him?

It’s because he and I never get any time just us.

We used to have it.  Before his brother was born, we had almost 4 years when it was just us everyday.  And even after Howie was born, we’d manage to have some time together – trips to the supermarket, time outside alone, reading books to each other.  We even went to New York City for my cousin’s wedding before Lewis was born.  We went to the top of the Empire State Building and watched it snow, wandered through FAO Schwartz in amazement, and saw the Statute of Liberty.

Where did that special time go? Hiding somewhere behind the chaos of our everyday lives. Pushed out by the meltdowns, the tantrums, the need to get dinner on the table before the house falls apart.

Gerry and I need to get that time back.

Starting this weekend.

Last night, after I got Howie to sleep, I climbed into bed with Gerry and told him my new plan.  Breakfasts with Mom.  Just he and I.  At the local diner – one weekend morning a week.  I told him we could talk, or not talk.  Eat blueberry muffins and drink hot chocolate and figure out if the table jukebox works.

Spotlight back on Gerry.

That light needs to be on ALL my kids, so no one is left alone in the shadows of this family.

Sometimes I feel like a motherless child
Sometimes I feel like a mother, a motherless child
Sometimes I feel like a motherless child
A long, long way from my home” – Motherless Child (spiritual)

The Scene: Pizzeria Uno’s Restaurant

The Date: October 7th, 2010

The Occasion: Our Anniversary

The Players: The Whole Family

 

Our main character had a great plan for that night, or so she thought.  The whole family out to celebrate.  She had forgotten that it was a Thursday night and the kids were usually physically and emotionally spent after the long week of school.  She neglected to notice that they wouldn’t be eating until almost 6pm, about 45 minutes later than they usually do.  And she had forgotten, maybe on purpose, that one of her kids has autism spectrum disorder.  She just wanted a nice dinner out with her family for her anniversary, dammit.  Just this one time.

I sent Tim an e-mail around 4:30pm asking if he wanted to meet us out for dinner for our anniversary.  Seemed like a pretty good plan at the time.  It had finally stopped raining, Gerry didn’t have any homework, and Lewis had taken a pretty good nap.  Plus, I had to go out anyway to get some special cupcakes for Howie to bring in to school so he could eat a treat along with the other kids celebrating birthdays.  We agreed to meet at the restaurant at 5:30pm.

My first mistake happened before we even left the house.  Howie had asked me for some juice as I was packing up our toys/cars/coloring books/yogurts/juice boxes for dinner.  I ignored it, thinking I’d remember to bring his juice cup in the car with me.  I didn’t.  His juice cup is his comfort – when he’s feeling out of sorts or not feeling great, he asks for juice.  He asked three times.  I missed it, and told him in the car that he’d have to wait until we got to Uno’s.

Tim was running late from work, so I brought the boys into the restaurant myself.  We used to go to Uno’s a few times a month, until it starting getting too expensive once all five of us were each ordering our own meals.  In the past, we’ve sat on one side of the restaurant – the side where the windows face the parking lot where we park.  This time, the host brought us to another side – a side where the walls were too high for Howie to see out of from his seat.  Cue meltdown number one…

With Lewis in one arm, my bag of food and tricks slung over the other arm, I dragged Howie screaming across the restaurant to our booth.  Wailing “BUT I WANT TO SIT OVER THERE!!”, I grabbed him by the arm and pulled him into the bench seat of the booth, while the host took about an hour to get me a highchair for Lewis.  Gerry slunk into the corner of the other bench.  Lewis threw the crayons onto the floor.  Howie continued with “Mama! Mama! Mamaaaaaa!” – his cry when he can’t formulate the words to tell me what is wrong.

(Now I know at this moment I could have stopped this.  Well, I know it now.  I could have asked the host to move us.  I could have calmly tried to understand from Howie what the problem was.  And had I known that things were going to continue to spiral downhill from here, I probably would have said something.  But instead I dug in my heels.  And I turned around and yelled at Howie to stop or else he would be waiting for us all in the car with Dad.  You know, whenever Dad got there.)

The world’s most indifferent waitress came over to take our drink order, and I told her we were actually ready to order our food.  Tim had already given me his pizza-no-cheese order, Gerry and Lewis always get the same thing, and I had brought Howie’s yogurt to have with french fries.  I was trying to order all this while Howie was trying to climb into my lap…check that, climb into my skin…still screaming “Mama! Mama! Mama!”.  The waitress looked annoyed to have to be listening to me through all of that.  Imagine trying to talk through it.

The waitress quickly ran away to process our order, I got Lewis drawing circles on the kids’ menu, and I was finally able to turn my attention to Howie.  “What IS it???” I asked him, much more loudly than I wanted to.

“I don’t want to sit HERE!”, he shouted.  “I don’t like the fans and the red light on the seat!!”

I looked up.  Above our heads were several circular fans, including one very old one up near the ceiling.  They were off, but for some reason were still bothering Howie.  And on top of each of the posts near our booth were two red lights.  Completely innocuous to the untrained eye.  Totally overwhelming to the kid already on sensory overload.

“I want to sit where there are yellow lights!  Not the red ones!!”

Thankfully Tim arrived at this moment.  He took Howie away from the table to look at the giant fans to see how they worked.  I walked around the restaurant with him to show him that none of the tables had yellow lights, and that if we sat at a certain angle, we couldn’t see them anymore.

We sat back down at our table and Howie climbed into my lap.  He turned around and gave me one of his hugs – the ones that tell me he’s trying so hard to calm his body down and feel better.  The hugs that dig deep into the skin on my neck and tear at my soul.  While he’s hugging me, he whispers into my ear:

“Why is everything in my life so difficult?”

At this point, our main character’s eyes filled up with tears.  “I don’t know, sweetie.”, she says. “I just don’t know.”

————————————————————————————————————————————————–

“‘Lady Peaceful,’ ‘Lady Happy,’
That’s what I long to be
All the odds are in my favor
Something’s bound to begin
It’s got to happen, happen sometime
Maybe this time I’ll win” – Maybe This Time from Cabaret

Tonight was Back to School night for my son’s preschool. As I walked up the steps into the big brick building with all the other parents, a weird feeling came over me. A little bit of nerves, a little bit of sadness, plus a little bit of something else that I couldn’t quite place.

Until I remembered. This is where it all started. Exactly one year ago. This was the night when I realized that my son needed help.

Tonight I walked past the classroom he was in last year and glanced in as the parents were taking their seats in the little blue and red chairs arranged on the circle time mat. One year ago, that was me. The “Me” with the lump in my throat. The “Me” that spent every preschool morning arguing and yelling because my son wouldn’t put his shoes on. The “Me” that dragged him out of school kicking and screaming because playground time was over. The “Me” that hadn’t slept more than 3 hours straight in 3 years. The “Me” that just couldn’t figure out what was going on with my kid.

I stopped for a moment in the hallway and closed my eyes. I remember that evening so well. I remember barely listening to his teacher discuss the preschool curriculum because I was still stuck on how terrible his day at school had been. I remember half-listening to her story about how the kids had table time, and that one kid (no name given) kept taking other kids’ name tags off the tables and putting his own there because he wanted to play with the trains and only the trains. I remember knowing in my gut that was Howie, and while the other parents laughed at the anecdote, it made me want to cry.

I remember asking the aides in the classroom how things were going for Howie, and their response was “ask the teacher.” I remember staying late after everyone was gone and talking at length with his teacher about his transition issues, his meltdowns and his difficult behavior in the classroom. She told me that the general accommodations in the classroom weren’t working for Howie anymore. And I remember this incredibly smart and astute teacher telling me – without words – that we needed to get Howie evaluated by a professional.

And I remember crying the “ugly cry” the whole ride home from that Back to School night one year ago, knowing in my heart that she was right but not knowing what it all meant or even what to do next.

That night set in motion a chain of events that would change our family forever. There was the initial appointment with our pediatrician who told us that she didn’t think Howie was on the spectrum, but that he had some “spectrum-like tendencies”. There was the speech/language assessment and the hearing test to rule out anything physical as the reason why Howie couldn’t process two-step directions. There was the piles of paperwork as we tried to get him on every wait list possible for an evaluation, and the call three months later for a appointment with a developmental pediatrician. Then the diagnosis that we expected but still didn’t understand – autism spectrum disorder.

From there, much is a blur. The diagnosis allowed us to reconvene our special education team and develop Howie’s IEP. He was assigned ABA techs to work with him one-on-one in and out of the classroom. He had OT visits, social speech groups, and home visits. The school tailor made a program to fit his needs. I got PECS cards, visual schedules, and daily log sheets of his activities. I learned words like “stimming”, “perseverate”, and “sensory diet”. We gave Howie our undivided attention and divided our attention with our other two boys. We bought books, weighted blankets and therapy equipment. We learned behavior modification techniques and used phrases like “red choices” and “green choices”. We worked closely with the amazing school staff and that incredible teacher to do whatever we could to give Howie a chance at loving school and succeeding in life.

And…

What a difference a year makes.

I walked into his new full day inclusion classroom tonight with a smile on my face. My husband and I had met with his teachers last week and I already knew things were going well. He has two incredible ABA techs that really understand him. They are giving him the choice of starting his day in the OT room to help “get the wiggles out”.

Let me say that again – they are giving HIM the choice. Which means he has reached a point in one year where he is able to verbalize his sensory needs. My little guy, who one year ago couldn’t leave school without a total and complete meltdown, now understands his body enough to know what he needs. My little guy, who one year ago couldn’t lose a game or draw a picture without a complete on-the-floor tantrum, is now running races on the playground and bringing home pictures that he wants hung up in my husband’s office. Of course, this is all with his amazing teachers by his side, cheering him on. But still…after this incredibly hard year, filled with anxiety and confusion and tears and difficult work…maybe we’re finally getting somewhere. Maybe we’re finally understanding our son.

I sat through the entire curriculum presentation tonight feeling – for the first time in a year – that my son could do it. I looked around at the walls and he actually had artwork up for display. Every one of his teachers came up to me and told me how much they enjoyed having him in class. Every one of them told me how amazed they were at how well his was doing and what a difference it was, even from just summer school. One of his techs actually told me that Howie’s “the reason I love my job.”

What a difference a year makes.

And now, maybe there’s hope for kindergarten back to school night next year.

Five hundred twenty-five thousand six hundred minutes
Five hundred twenty-five thousand moments so dear
Five hundred twenty-five thousand six hundred minutes
How do you measure, measure a year?”
-Seasons of Love from RENT

In daylights, in sunsets
In midnights, in cups of coffee
In inches, in miles, in laughter, in strife
In five hundred twenty-five thousand six hundred minutes
How do you measure, a year in the life
?”

I am not a “hugger”.

I’ve never been one, either. I’m not sure why. I’m just not a fan. When someone comes up to give me a hug, I can feel my body stiffen. It doesn’t matter if it’s a close relative or an acquaintance, it’s just not something I’m comfortable with. I have learned to cope with it but it’s not my favorite way to greet someone.

I’ve understand now that I’m what is called a “sensory avoider”. I don’t like being touched or standing in a crowded room. Places like Costco and Wal-Mart make me want to run for the hills.  I may end up paying more for diapers, but it’s better than having a panic attack next to the giant packages of paper towels.

My son Howie, on the other hand, is a hugger. A huge hugger. I haven’t officially kept track, but there are days when it feels like he has asked for about a thousand hugs. And all from me.

See the tabloid headline now: “Sensory avoider gives birth to sensory seeking kid!”. I don’t remember learning about this possibility when studying genetics in high school. Considering my husband is also a sensory avoider, we must both be carriers of the sensory-seeking gene.

Howie’s been a sensory seeker since I can remember. It started mostly with sleep issues, with a constant need to be next to someone (me) while sleeping. He created a technique he called “tunneling” – meaning he would stick his hands into the side of my neck and ask me to press my head down into his hand. This is how he would fall asleep for about two years until we discovered that weighted blankets, body pillows and 2mg of melatonin did the trick, although I still have to lay next to him at night with my arms wrapped around him in a giant hug as he falls asleep. Sometimes when he has a hard time falling asleep or is uneasy in a situation, he still asks if he can “tunnel”. With me. And only me.

The hugs can interfere with our daily routine. I’m trying to change a diaper, and he needs a hug. I’m trying to make or eat breakfast/lunch/dinner and he needs a hug. There are days when he asks me for hugs for hours straight. I know others see it and think it’s cute. When we had the Children’s Hospital researchers here a few weeks ago, Howie was clearly uneasy about them being in our house. He asked me over and over again “Can I have a hug?”. He would say this as he was digging his legs into my lap and his hands into my neck. The researchers smiled and said “aw, that is adorable!”. It was all I could do not to scream.

How awful is that? My own kid’s hugs can make me want to scream.

But it’s because they are more than just hugs, as I tried to explain to the research team. It’s his cry for help.

I’ve learned to differentiate between different hug requests – ones for when he’s happy and proud, ones for when he’s bored, ones for when his body doesn’t feel right after something he ate, ones for when he’s tired, and ones for when he’s completely out of sorts. Those last ones are the most difficult, because they hurt the most physically and emotionally. When he’s unable to regulate his body, he squeezes me so hard that he actually chokes me. But I know he needs them to make himself feel better, and it takes every inch of my being sometimes to give him the hug back.

But I do. Because I’m his mom. And I know it could be so much worse.

Until he learns how to regulate himself, those hugs are all he has to make him feel right. We’ve tried to teach him ways to help himself – squishing under pillows, sitting in the bean bag chair, climbing in the body sock – and we’re working on giving him better words to use when he’s out of sorts so others can help him. We’re always showing him more appropriate ways to get the sensory input he so desperately craves. My husband will pick him up and squeeze him like an accordion (because if he calls it a hug Howie runs screaming away from him), and Gerry will have a gentle pillow fight with him. My hope is that someday “Can I have a hug?” won’t mean “I need help”.  Someday it will just mean “can I have a hug?.”

I can’t wait to write that headline.

U can’t touch this
Look in my eyes,man
U can’t touch this
Yo, let me bust the funky lyrics
U can’t touch this
” – You Can’t Touch This by MC Hammer

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