December 26, 2011

Dear Mr. President,

Hi! My name is Gerry* and I am nine years old. I have a recommendation of lighting the White House blue at Autism Awareness month next year. The White House is not one of the many famous landmarks that has been lit blue in April. I say this because my brother is autistic,  and it made me feel great to see all those buildings lit blue, because blue is the autism color. I made a model of the White House from a Lego set I got from Hanukkah. I put blue pieces on it to show what it might look like:

Light It Up Blue

The White House...in blue

This was just a recommendation.

Sincerely yours,

Gerry

**********

It’s time to start thinking about this again.  Last year, my friend Jess at Diary of a Mom got a grassroots campaign going to encourage the President to “Light It Up Blue” on Autism Awareness Day in April.  He said no.

We’re saying “wrong answer”.

Mr. President, make this year the year you turn the White House blue.  For my two sons with autism.  For their brother who loves them so much.  For the thousands of families who ride the autism rollercoaster every single day.

One day.  One bulb.

How can you say no to this face?

I can light it blue, can you?

I worked all afternoon on it.

*name changed for the blog, but the letter is in the mail to the President for tomorrow.

 
“Hail to the Chief we have chosen for the nation,
Hail to the Chief! We salute him, one and all.
Hail to the Chief, as we pledge cooperation
In proud fulfillment of a great, noble call.
Yours is the aim to make this grand country grander,
This you will do, that’s our strong, firm belief.
Hail to the one we selected as commander,
Hail to the President! Hail to the Chief!” – Hail to the Chief  by Albert Gamse
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Chip off the old block.

The apple doesn’t fall far from the tree.

and my personal favorite, taught to me by a friend:

Cats don’t have dogs.

Because really, they don’t.

All these expressions mean the same thing – our kids are a lot like us.

I’ve written a lot about all the sensory challenges that my son Howie has.  But my other two have their sensory “things” too.

As do I.

I’m a clear sensory avoider.  I don’t like hugs or being too close to people I don’t know.  I’ll be the one to sit across the room on the chair rather than share a comfy couch.  I can’t stand it when someone sits right next to me in a movie theater, especially when there are still plenty of open seats.  And at a party or gathering, I’ll be the one holding up the wall in the corner, nursing the same drink all night so I don’t lose my spot.  That’s just me.  And really?  Never touch my neck.  Or feet.  Off limits.  I haven’t worn a turtleneck or scarf since I was in grade school, and if I can avoid socks and boots, I’m a happy person.

I have my food issues too.  If something doesn’t smell or look right, I can’t eat it.  While I am a big fan of food in general, I have some serious texture issues.  Like tomatoes.  And olives.  And a banana that is more than a day ripe.  I’m shuddering as I write.

And of course, my fear of failure paralyzes me.  I quit softball because I didn’t want to try out.  I worked my butt off in school because the thought of a bad grade terrified me.  I retreat and read to escape.

My oldest is a lot like that.  He likes his personal space, and he likes it quiet.  He can’t stand it if his shirt is too tight on his neck.  If the house gets too noisy or if someone in his class is clicking their pen, he’s upset. His food needs to look just right or he won’t eat it, and forget about mixing any food together.  He’ll play baseball but gets frustrated quickly with team competitive sports.  He prefers to play the piano and read.  He gets really good grades, but wants more from school than just rote work.  He wants it to mean something.

My youngest needs his socks to fit just right and his pajamas to be loose.  I used to think that his meltdowns over spilled food were a sensory thing, but we discovered quickly that it was because he was missing out on food.

And my husband…well, this is my post not his.  Let’s just say that our two sensory avoiding/perfection seeking trees created some apples that didn’t fall far from us.  Or something like that.

It’s clear that somehow our kids got this from us.

Somewhere in the mix, Howie came along as the lone sensory avoider and seeker.  He’s the only one with an actual sensory processing disorder diagnosis.  And with that also came the autism spectrum diagnosis.

So it was great interest and a knowing smile that I read the essay “Like Mother, Like Son” by Amanda in the book Wit and Wisdom from the Parents of Special Needs Kids (yes, that’s the book I’m in too!).  I’ve been a reader of Amanda’s great blog Confessions From HouseholdSix for a while, and was so glad when she agreed to write a post for the SPD Blogger Network on her son’s sensory issues.  They received their second autism diagnosis in the their family about a month before we got our second one.

In her essay, she writes:

When I dreamed of what my children would be like, I dreamed they would be like me.  They would get good grades in school.  They would like to play sports.  They would be involved in other academic activities after school as they got older.  I never dreamed of the word autism.

Autism has been a funny little word in our house.  My oldest son was diagnosed later at age eight and a half.  By this point I had realized that this child is me, only more intense.  But he is me.  Does that put me on the spectrum too?  This is a question that my son’s diagnosis has made me ponder often.

She goes on to talk about all the sensory issues that she shares with her son, and they were so familiar.  Clothing troubles?  Check.  Food issues?  Check.  Desire for perfection? Check.

Her last paragraph sums it up nicely:

Are these all traits of autism?  It’s hard to say.  Does this mean I’m on the spectrum too?  I don’t know.  I do know that autism or not, I did get a child like mine.

And this is, of course, what swirls around in my head all the time.  Is my oldest on the spectrum too, like his brothers?  Are we?

It’s a question that I’m not sure has an answer, nor perhaps does there need to be one.  We all know that the spectrum is broad and wide, and that everyone – EVERYONE – has some sensory issues.  It’s about how you cope with them.  For Howie, he can’t cope with them right now.  So we’re teaching him.  And in that process, we’re teaching his brothers – and the rest of us – how to cope as well.

I do know that seeing pieces of me in my kids gives me a better understanding of what they are going through, and gives me more patience and tolerance in helping them through the tough moments.

That’s what Amanda’s essay did for me.  Seeing myself in her words helped me be a better parent.  Just another way that I feel a little less alone in this world.

As we go down life’s lonesome highway,
Seems the hardest thing to do,
Is to find a friend or two.
That helping hand, someone who understands.
And when you feel you’ve lost your way,
You’ve got someone there to say, “I’ll show you.”

Ooo-oooo.
Say you, say me, say it for always,
Aw, that’s the way it should be.
Say you, say me, say it together, naturally” – Say You, Say Me by Lionel Richie

Wit and Wisdom of Special Needs Bloggers

Buy The Book - You'll Feel Less Alone too

It’s not you, it’s me.

If I don’t exchange in small talk outside the preschool at pick up, it’s not because I’m standoffish.

If I don’t return your phone call or respond to one of the 500 e-mails in my inbox, it’s not because I don’t want to talk with you.

If I say no to the playdate or birthday party, it’s not because we don’t like you.

If I say yes to the playdate or birthday party and we’re 30 minutes late, it’s not because I’m rude.

If I forget to send the thank you note, it’s not because I’m ungrateful.

If I haven’t read or commented on your most recent blog post, it’s not because I don’t care.

I just don’t have it in me right now.  I can’t do the small talk.  I can’t respond to the e-mails outside of the most urgent.  I can’t get anywhere on time, mail anything on time, or read the articles I want to read.

There’s too much noise going on inside my head.

I’m thinking about my friends who have been without power for more than 9 days, and about how their kids’ lives have been in chaos since the crisis began.

I’m thinking about my amazing friend who just ran her first marathon in New York today.  Running with my kids’ names on her back.  How proud I am of her and how honored I was to have my kids with her.

I’m thinking about members of my family who are too young to be in a battle for their lives.

I’m thinking about the instant changes we’ve seen in Howie’s plan for school since my presentation.  I’m so happy that things are better but know that it shouldn’t be this hard.

I’m thinking about the moms and dads that wake up every morning, wondering if this will be the day when their child will talk.

I’m thinking about my friend who husband is home on leave from Afghanistan, and how happy and rested she looks.  I’m thinking about how to support her when he returns to his base.

I’m wondering how I’ll get through the next day, let alone the next week or two.

I’m missing my dad.

I’m struggling with the fact that I’m seeing the “autism” more and more in my two youngest, and I don’t know what that means for them.  I’m also wondering if we’ll be adding another diagnosis to the mix for my oldest sometime soon.

I’m looking ahead to January, when all three kids have appointments with developmental specialists.

I’m terrified of not being here for my kids, so much so that it paralyzes me.  I don’t like to travel far from them without them in case something happens.

When I am in chaos – when my brain is overloaded – I retreat.  I wall myself in and protect myself from what I can’t be right now.  For better or worse, I need to keep my kids close to keep me from breaking down.

You have to understand that there are times that I want to be like you.  I want to be able to chat about the weather and make playdates on the fly and comment on every awesome blog post that I see.

There are times when I want to be you.

but…

I’m thinking that the best sound is my three boys laughing together. Their sweet voices complement each other in perfect harmony.  And I hold on to that for dear life, praying it will never change.

And that’s when I just want to be me.

So please remember:

It’s not you.  It really is me.

Words are flowing out like endless rain into a paper cup,
They slither while they pass they slip away across the universe
Pools of sorrow, waves of joy are drifting through my opened mind,
Possessing and caressing me.
Jai guru deva, om
Nothing’s gonna change my world,
Nothing’s gonna change my world.
Nothing’s gonna change my world.
Nothing’s gonna change my world.” – Across the Universe by The Beatles

At daycare, he was the one I brought in clinging to my leg.  The one crying, asking me not to leave.  The one the teachers said would stand outside the circle of kids, watching, until he was ready to join in.

In preschool, he stayed next to me and the other parents while his classmates ran around on the grass, chasing each other before school started.  Eventually, he’d join in, but stopped immediately when the teacher came to the door, calling the kids inside.  He was also the one reading the books aloud with the teacher at circle time.  The one who brought in a globe for show-and-tell.

In kindergarten, he was the one who cried when he was the last one to complete a paper because he had to get it just right.  He was terrified of raising his hand for fear of giving the wrong answer.  But he was also the one who gave the right answer all the time.  The one who had the glowing report card from the start.  The model of good behavior for the other kids.

In first and second grade, he was the one who wowed his teacher with his knowledge.  He read every book she offered to him, and encouraged his love of history and science.  He mastered every subject with ease.  But he was also the one who obsessed on his handwriting and not the content of his work.  The one who played with a friend or two at recess but didn’t join in the group.  The one who needed his dad to coach his baseball team to build his confidence.

In third grade, he was the one who was happy about the extra work sent home from the teacher.  He did math puzzles and read extra pages at night and wrote about them in his journal.  He was the one who taught the other kids how to make origami Yodas during inside recess.  But he was also the one who had an anxiety attack about the school’s standardized assessment tests, to the point where he needed to meet with the guidance counselor.  He obsessed over not getting every answer right.  And he was also the one with a just few very good friends.  The one invited to only a few birthday parties.

He’s shy.  Brilliant.  Quiet.  Sensitive. An old soul.  The kid every parent wants their kids to be friends with.

We are now here in fourth grade.  Things are a little different.

Last night before bed, Gerry told me he couldn’t go to school.  I have a stomach ache, he said, and my leg hurts.

Having been there before, I asked him what was really going on.  Every night since school finally started, there has been something new keeping him awake.  Up four times a night.  Hot and cold.  Worried about this and that.  Confidence in the toilet. Unsettled. Unable to complete his homework or piano assignments unless either Tim or I are in the room with him.

I’m bored in school, he said.

I pressed him further, knowing this was far from the truth.

Sigh.  I can’t focus, okay?  I sit there. I want to pay attention but I can’t.  I start to daydream and I’m thinking about the Star Wars Clone Wars website, and then about Open House night and then picture day.  I go deaf.  I don’t hear the other kids around me anymore.  When I come back, I’ve missed the whole math lesson.  I can’t tune in to anything around me.  I have a very full life and my brain can’t shut it off to concentrate on magic math squares.

And up go my red flags.

I know the kid has a lot on his plate.  To say things around here are anything but stressful would be a lie.  Back to school has been a challenge for us all.  His brother is in his school for the first time.  Rides in on a different bus.  Runs in different circles – literally.  Our house has become a revolving door of therapists for both his brothers.

His anxiety about everything is not new.  If I can be honest, he’s a lot like me there.

But the focus thing is completely new.  This is the first time he’s expected to really pay attention in class.  There’s no hand holding anymore.

I had a brief conversation with a neighbor about it this morning.  Her middle son started having his attention issues in fourth grade as well. He was so smart, she said, that he had been able to get by on his intellect up to that point.  But fourth grade, everything changed.  Add in hormones and friend issues…these kids have a lot going on.  We’ve started now with anger management problems too.  He thinks that his youngest brother gets everything and he gets nothing.

Yes, my neighbor’s youngest son is on the autism spectrum.  Just like in our house.

I don’t know where this will all go for Gerry, but I know that I owe it to him to find out.  He needs a safe space to go to get it all out.  To figure out what is real and what is perceived worry.  To get his focus issues under control before they throw us all out of control.

My friend wrote about worry in her post over at Diary of A Mom.  It hit home. Hard.

So today we have an appointment with our pediatrician to get things started.  And tonight’s at his school’s Open House, I’ll feel out the teacher to see how she can help in the classroom.  Immediately.

I worry about all my kids, but Gerry… I need to take his troubles away. To get that shy, brilliant, amazing kid back out.

I’ll help you figure this out, I told him last night.  Don’t worry.

I love you, Mom.  Thank you.

Even though he's not a little kid anymore, I can still try to take away his tears (picture from December 2004)

Let me have a look inside these eyes while I’m learning.
Please don’t hide them just because of tears.
Let me send you off to sleep with a “There, there, now stop your turning and tossing.”
Let me know where the hurt is and how to heal.

Spare me? Don’t spare me anything troubling.
Trouble me, disturb me with all your cares and you worries.
Speak to me and let our words build a shelter from the storm.
Lastly, let me know what I can mend.
There’s more, honestly, than my sweet friend, you can see.
Trust is what I’m offering if you trouble me.” – Trouble Me by 10000 Maniacs

“Meltdowns Happen.”

They used to be a lot more frequent around here, but we’ve been in a lull.  Until last Thursday.

Read my new post about how I was “stuck in a moment” at the SPD Blogger Network.  And see how my son pulled me out.

Stuck In A Moment

(and while there, click around a little.  Inspiring posts.  Incredible writers.  All with one goal – making us all feel a little less alone.)

It’s not you, it’s me.

I’m at Hopeful Parents today.  Sort of.

Hopeful Parents

You're So Vain

Click HERE for You’re So Vain at Hopeful Parents

(and while you’re there, click around.  There’s some great posts by some amazing special needs parents)

So many of my posts are filled with stories about my boys – all three of them.  It’s what this blog is all about, after all.

Watching my oldest and my youngest struggle with their brother’s autism diagnosis has been the most difficult thing for me.

When I first read the blog The Squashed Bologna, written by the amazing Varda, I felt an instant connection to her story.  She was also writing about her boys – twins.  One of her twins has autism, the other does not.  Her stories were like mine.  We both felt the tug of wanting to be there for one child, but needing to be there for another.  We both felt the sadness when one child hit developmental milestones that the other did not.  We both just wanted one day when things would be easy for us and our boys.

So when she approached me to be the first writer in her Special Needs Sibling Saturday, I instantly said yes.  Actually, YES PLEASE!

Today is that day.  Please visit me over at Special Needs Sibling Saturday at The Squashed Bologna.  And while you’re there, read Varda’s posts.  Her stories, her photos and her love for her boys warrants a long stay.  I am so honored to call her my friend.

Special Needs Sibling SaturdayClick Here for My Brother, My Brother