June 2012


“I took the kids to a barnyard and creamery. The goats are humping each other and there’s a bunny that is definitely not alive.  And we got rear ended on the way here.  Has school started yet?” – my text to a friend yesterday morning.

It has been a long hot week.

This was our first full week of summer vacation at home.  Last week we spent three days in the middle of the week at Our Happiest Place on Earth.  Not Disney, but Story Land in New Hampshire.  So this was my first week that I was full on in charge of the daily activities for three boys who either play together fabulously or throw Hot Wheels cars at each other.  There’s no in between.

So…yeah.  I’ve been pulling 18 hour days of being Julie McCoy.

I woke up on Tuesday thinking it was Friday.  That was bad wishful thinking.

There hasn’t been much in between with the weather too.  For two weeks straight it’s been either torrential rains or 95 degrees out.

Friday was one of those days.  It poured like crazy for two straight hours when we woke up and then turned blistering hot.  I needed to escape the house and chose a little creamery near us that had a barnyard.  They also had something called a “barnyard jump”, which looked like the bottom part of a bounce house.  Even showing my kids all of this, it still took us 45 minutes to get out of the house.

Herding cats is an understatement.

We got about six minutes from our house, and I slowed the car down because the car in front of me was taking a left.  I was at a complete stop when in my rear view mirror I see a small Toyota truck get closer and closer and…

BAM!

I pulled into the restaurant parking lot that was on the side of the road, and the 12 year old driving the truck got out, looking horrified.

(Yes, I’m sure she wasn’t 12.  But she looked it.  Because I’m that age now when anyone under twenty-five looks twelve.)

We exchanged info even though there wasn’t any visible damage to the car.  The kids were wide-eyed but okay.

We got to the creamery right as it opened and the sun was beating down.  As we piled out of the car, one of the girls working there walked by.

“Can you tell us where the barnyard bounce is?” I yelled across the parking lot.

“It’s down the hill but it’s not open.  It’s too wet from all the rain.”

Um…what?

“Do you think it will open this morning?” I yelled again, with a slight hint of desperation.

“I have no idea!” yelled the girl back.

Oh good.

I turned to the boys and tried to explain the situation.

“So, the big jumpy thing is wet from all the rain and it’s not open now.  I know it will be a disappointment if we can’t go on.  But let’s go look at the animals and hey…how about ice cream for lunch!”

That seemed to settle them for a bit and we checked out the barnyard.  On the hill below, more twelve-year-olds were walking around the big jumpy thing with giant hand dryers.

The barnyard had some cute baby chickens, some very loud grown-up chickens, goats, bunnies, alpacas, a pig and a cow.

The kids were most excited by a big dog that kept running by with a John Deere collar.  He ran up and down between the two fences separating us from the animals.

There was one very quiet bunny laying by its water dish.  At first, I thought he was just resting.  It was 90 degrees after all.  But then the dog ran by several hundred times and it didn’t move.  A closer inspection by me as the kids ran with the dog proved that the bunny wasn’t breathing.  The farmer (??) didn’t seem to notice and I didn’t want to upset the kids.

I was then distracted by the goats that started…um…climbing on top of each other.

“Time for ice cream for lunch!” I proclaimed.

That killed a good 30 minutes.  I’m sure Howie ate all sorts of forbidden corn syrup products in his ice cream and I knew I’d pay later, but at that moment I just didn’t care.

(note: I forgot my camera, so these pictures were taken on my incredibly old BlackBerry.  I only have space for 5 pictures to save on the phone so I delete the crummy ones along the way.  Yes, these were the best ones.)

“You can eat the bowl!”

We left when Howie tried to follow the model train into the employees only area as Lewis was yelling “Pay online! Save time!”

(another note: if anyone can tell me what that is from, I would greatly appreciate it.  So I can make sure he doesn’t watch it again.)

As I was about to tell the kids that we were going home, we noticed some kids jumping on the barnyard bounce.

So with bellies completely full of ice cream…away they went.

please don’t puke…please don’t puke….

“Get out of here bugs!! You don’t want us jumping on you!!”

Best $15 for 45 minutes I’ve spent in a long time.

(last note: I also forgot sunscreen which meant we couldn’t play on the mini-golf course that was “calling my name!” as Gerry put it.  I told them their dad would be upset if we golfed without him so we’d have to go back with him.  Sorry Tim.)

Howie insisted on saying goodbye to the animals before we left.  The definitely dead bunny was still there.

The goats were done with their…business. So they came over to say hello.

Once Lewis started taunting the goats with “Hey goat! Look at you stuck behind those two fences!”, it was time to go home.

But not before one last really bad picture. Someone is all done. Someone besides me that is…

On the way home, we drove by the spot where we were rear ended all those hours earlier.  Howie proclaimed “Hey!  That’s where that truck smashed into us!”

I am pretty sure we’ll hear that for the next 35 years.

We have ten more days before camp starts for Lewis and our Extended School Year program starts for Howie.

Until then, I’ll have my Julie McCoy hat on.  Look for me.  I’ll be the one herding the cats.

Ten more days. I can do it.

Hot summer streets
And the pavements are burning
I sit around
Trying to smile but
The air is so heavy and dry
Strange voices are saying
(What did they say)
Things I can’t understand
It’s too close for comfort
This heat has got
Right out of hand

It’s a cruel, (cruel), cruel summer
Leaving me here on my own
It’s a cruel, (it’s a cruel), cruel summer
Now you’re gone” – Cruel Summer by Bananarama

Thinking of all my friends in the Mid-Atlantic states hit hard by last night’s storm.  I hope you get your power back soon so you can read that I’m thinking about you :)

Today I saw dad over the small flat square at our house in the sky telling me we are all going to be okay…you will always be his child… forever we are his special people.” – my sister after a trip out to the the house where we grew up.

From time to time, people will ask me to pray for them.  Or their child.  Or a loved one.

I always say that I will.

And I do.

But I pray to something – someone – different than most people do.

When I ask for help, or guidance, or good thoughts…I talk to my dad.

Growing up, we weren’t very religious.  We were raised Jewish but never belonged to a temple.  My father and my aunt were our religious teachers, holding family Hebrew school classes in our backyard or around the dining room table.  My father thought it was important that all three of his kids have a Bar or Bat Mitzvah, but he was the one to preside over them, not a rabbi.  We read sections from the Torah as well as portions of Martin Luther King Jr.’s “I Have A Dream” speech.  He practiced with us in the evenings and while we played outside.  He was very sick with pancreatic cancer when my sister turned thirteen, yet he still insisted on not only going forward with her Bat Mitzvah but presiding over it.  We set up a tent in the backyard, invited  family and friends, and celebrated her special moment.

The concept of God came up quite a bit while growing up, of course.  I believed there was a higher power because I loved the idea of it all. My father was clearly agnostic.  We would have constant debates about the subject, as I would say there was no way for him to know there wasn’t one and he would reply with “How do you know the frog in the pond doesn’t control the universe?”  The conversation never had an end, of course, but it spoke to the very core of his views on religion.  He loved the history and traditions and family connections of Judaism yet was skeptical of the idea of God and blind faith.

I believed in faith and fate and the beauty of the idea that someone was guiding my hand.

I still do.

But now I believe that the someone guiding my hand is my dad.

His light comes to me in amazing places. as my sister said, the warmth that comes during a time of severe pain, and I know that he is there.

And now, when I am at a loss as to how to help my boys, I look out the window and talk to him.

It is my father that I ask to give me the strength to get through the moments that leave me on the sobbing on the floor of the shower.

And when we make it through those moments, it is him that I thank for helping me through.

I asked for his guidance when marrying Tim.

The rainbow that appeared during a snow flurry at my wedding showed me he was there.

The rainbow appeared just after this…right above the sheep…

I watch the relationships grow between Tim and our boys.  I watch him teach our kids about politics and car engines and life.

Robots with Dad

It is a scene so familiar and so lovingly honest and true.  My boys adore their dad and rely on him to feed their love of learning and life.

I pray every night for my family.  I pray that we will stay healthy and strong and continue to love one another in the best way that we can.

I still believe in God.  But I turn to my dad when I pray.

I am so very grateful to have someone I know answering my prayers.

Happy Father’s Day to my husband who every day does more than 30% times three.

And Happy Father’s Day to my dad who I still miss very much…thirteen Father’s Days later.

You gotta talk to the one who loves you
Talk to the one who understands
Talk to the one who gave you
All the light in your eyes
All the light in your eyes

Yeah, thank you, thank you
Yeah, everything great and small
Yeah, thank you, thank you
For the light in your eyes” – Light In Your Eyes by Sheryl Crow

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

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

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

Miss P is – was – his kindergarten teacher.

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

I go back to working.

Five minutes later, I hear quiet crying.

Sobbing.

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

I turn around.  Howie is crying into his pillow.

“What is it?  What is wrong?”

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

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

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

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

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

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

But then…he went on.

Because it wasn’t just about the chair.

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

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

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

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

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

Can I just pause for a moment? 

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

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

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

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

The crying and the questions continued.

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

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

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

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

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

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

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

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

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

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

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

Progress and pain.

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

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

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

Tonight I got “The same back to you.”

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

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

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

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

It’s always just one more thing.

Progress and Pain.

 

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

Dear Substitute-

You caught me off guard today.

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

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

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

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

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

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

Suddenly it wasn’t small talk anymore for me.

You stopped me cold.

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

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

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

I stared at you for a moment.

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

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

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

But instead

I simply said,

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

I turned around.

I walked into the school.

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

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

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

I hope your daughters are their own people too.

However..

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

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

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

For my son, throwing up is the ultimate horror show of sensory overload.  He’ll avoid it at all costs…actually preferring to swallow it than throw it up.” – A conversation I had with a friend when my son was sick

Dear American Academy of Pediatrics-

I’d like to take this opportunity to respond to your position paper on Sensory Processing Disorder and its inclusion in the new DSM-V (Diagnostic and Statistical Manual of Mental Disorders).

I meant to write to you that night when the paper came out.  I read all the media coverage.  The articles with headlines like “Doubt Cast on Usefulness of ‘Sensory’ Therapies for Autism“, with quotes like “there isn’t much evidence that such therapies actually work” and “some other issue could underlie their reactions to stimuli, such as a behavioral issue.”

I read all this and I was angry.  How dare you? I thought.  We’ve been living with sensory processing disorder for over six years now.  Do you? How do you know?

I took the time to read your actual position paper.  I cooled off a little.  I needed some time to think before I could share how I felt.

But I’m not going to respond as a writer with interviews and counterpoints.  My friend Brenda did an amazing job of that with her post at The Thinking Person’s Guide to Autism.  I hope you read it.

Instead, I’m simply going to respond as a parent.

I’ll admit it.  I had no idea what sensory processing disorder was until about 4 years ago.  All I knew was there was something going on in my son’s body that I couldn’t figure out.  Back then, we called it “not comfortable in his own skin.”  He couldn’t sleep without touching me and would wake up every 45 minutes.  He wouldn’t eat anything with chunks.  Smells and noises threw him for a loop.  He wouldn’t want to be touched, yet he would smash his body into me and everything around him.  He couldn’t handle the world around him.

We called our pediatrician.  She told us to call early intervention.  We filled out the Dunn Sensory Profile.

It was the first time I cried as a parent over a form.  The questions kicked me in the gut.  It was clear that my son had “definite differences” in many areas.

We qualified for early intervention for occupational therapy for his sensory issues.  Once a week, the OT came to visit.  She would have him carry heavy balls around and knock down towers.  She put him in a body sock and sang songs to him.  She created obstacle courses and did joint compressions.  She “brushed” him.

I’ll admit it again.  At first I thought…what the heck is this?  How could this help?

But it did.  My son was calmer after his sessions with his OT.  Some therapies worked better than others.  We did what worked and stopped when it didn’t.

In preschool, he had a very set routine with the school OT for a in-school sensory diet that consisted of before school “tune-ups”, and many sensory breaks as needed throughout the day which included walks, jumps on the trampoline, and swinging in the therapy swing. We also had a routine at home. The school sensory diet piece got dropped at the beginning of his kindergarten year – or perhaps more precisely, the need for this sensory diet was not as understood at the kindergarten level – and we had quite a downward spiral in behavior in the classroom and at home. Now, with the guidance of the school OT, my son has a much better prescribed sensory diet in the classroom in conjunction with his behavior plan, and he’s doing much better.

Now, I’ll tell you, American Academy of Pediatrics, in reading the actual paper, there are some interesting pieces in there. One piece is is making pediatricians more aware of sensory issues, and encouraging parents to delve deeper into the route causes of the sensory overload. For many parents, like me, I noticed the sensory stuff WAY before any of the signs of autism spectrum disorder. I believe that any conversation about this between parents and doctors is a positive step, and you’re asking pediatricians to have frequent follow up appointments with parents who are doing sensory integration therapies. Stemming from this, I am also happy to see the idea of telling parents that it’s okay if one therapy isn’t working and to stop it and perhaps try something else.

But…

I know plenty of parents desperate for help and recognition of these sensory assaults who get dismissed by their doctors, or perhaps given an alternative diagnosis that doesn’t really fit their kid but allows them access to services. I wish you had told doctors to refer parents to a qualified occupational therapist for help with the sensory therapies, so that parents aren’t out there trying things on their own with no guidance. The two professions should be working together for the good of the individual child.

I have three boys, different as morning, noon and night.  My oldest definitely has sensory issues.  Hates certain clothes, incredibly picky eater, smells throw him over the edge, can’t stand noisy places. But no diagnosis.  My youngest?  Has the PDD-NOS diagnosis, but his sensory issues are almost zero.  No different from mine.

But my middle guy?  The one I’ve been writing about here?  The one with both the SPD and PDD-NOS diagnosis?

I firmly believe that my son’s sensory “fight or flight” reactions are the driving force behind all that he does. His inability to process his world is his biggest issue. Social skills issues, his hyper-focus, his sleep troubles – all sensory. I can say is that the therapies devised by our OT have worked for my son in helping him organize his body and thoughts.

I’d like you, the American Academy of Pediatrics, to spend just one day in my house.  Then perhaps, spend an evening with another child who has SPD.  And then, talk with an adult with sensory sensitivities. Just like every autistic person is different, sensory issues present themselves differently in every person as well.

I can tell you that it is real.  For my son, it is his reality twenty-four hours a day, seven days a week.

As his parent, it is my reality too.

Perhaps, AAP, we should shift our mindset away from phrases like “treatments that work” and focused more on “therapies that help”.

I can NOT behavior therapy away his SPD.

My child and thousands like him need access to the sensory tools that will help him cope.

I think that SPD should be a stand alone diagnosis.

Put yourself in his shoes for just one day.  Please.

Let’s keep talking about this.  I have a feeling that soon you’ll change your mind.

How can you resist this face?

Sincerely,

Alysia

Your mind is made up you won’t even try
You didn’t even cry this time
You say that we could never see eye to eye
And one of us just must be blind

We have our differences
We’re still the same
See what we want to see
But you take a second look
And maybe things wouldn’t seem the same
If you could see what you mean to me” – Put Yourself In My Shoes by Clint Black

From the SPD Foundation: “Your voice is needed NOW to say that SPD does exist and that many are suffering. Research on SPD already exists, more than enough for inclusion as “a new category that needs additional research”!

Act NOW!  The final deadline to show informed support for the inclusion of SPD in the revised Diagnostic and Statistical Manual (DSM-5) is June 15, 2012.”

Click HERE for more information

Ten.

How are you ten years old?

I feel like I need to write something poignant.  Something meaningful.

Something about how you changed everything for me.

Something about how from the very moment they handed you to me, I knew you would teach me more than I could ever teach you.

You taught me that you have more understanding of what it means to be a big brother than most siblings do.

You taught me that being different isn’t wrong.  And showed me through your paper snowflakes.

You taught me it was okay to panic about having your brother in school with you because it was out of love and care and your need to protect him.

You taught me the way out of the meltdown the day when I was stuck in a moment.

You taught me that you need me to advocate just as fiercely for you as I do for your brothers and that you feel the stress in the house just as we do.

You taught me to put the spotlight back on you and showed me how to recognize when you’re in pain.

You taught me how much you are like my dad when you wrote to the President asking him to turn The White House blue.

You taught me that your brother deserved to know that  he was autistic because you knew he deserved to know why he was special.

You taught me that sometimes a brother knows best and wowed me with your “inventions” to help him, and.

And you taught me that ten years later, you are still my best travel companion.  And that sometimes a hug says more than words.

**********

Ten.

How are you ten years old today?

The title of this post is “The Man That You’ve Become”.  It seems an odd title perhaps for a kid just turning ten.

People say you have an old soul.  You have had to grow up fast here.  Your interests are “older” than many kids your age.

But you are still my little guy.  My buddy.  The amazing big brother who will still sit and watch “Blues’ Clues” and run laps around the house and pretend to lose the race.

I have no doubt that you will change the world.

You’ve already changed our little corner of it simply by being you.

Happy Birthday to my favorite ten year old.

Doing what you do best…being a brother

Big wheels, hot wheels
Little trucks and cars
Skinned knees, climbing trees
Wishing on the stars
Moments may be lost somewhere in time
But the sweetest memories are never left behind
Now you’ve grown so fine
And come so far…” – The Man That You’ve Become by Molly Pasutti

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