I cannot wait for January to end.

The month of failed mainstreaming and one terribly distressed little boy.  The month we lost SSI/Medicaid.  The month of illnesses,  financial disaster, and so much fruitless fighting.

I sat down this morning to write this post and my chair broke.  I broke a damned chair.

So apparently it’s been a month of (over)eating too.

It. Just. Needs. To. End.

Yesterday, I took EB to Chuck E. Cheese’s.  While we were eating our pizza (okay, I was dunking mine in Ranch dressing if you must know) we watched another child’s birthday party.

Chuck E. came out, there was singing, clapping, candle blowing.  The child was probably 5 or 6.

EB cheered and sang and was mesmorized by the event.

I asked if he might like to have his birthday party at Chuck E. Cheese’s.

He replied yes.

So I asked him which friends he wanted to invite.

He paused thoughtfully and said, “I think Mrs. H would come.” (One of his teachers assistants at school).

I said, “Yes, I bet she would.  What other people?”

He listed several other names.  All adults.  All love him dearly.  Yet, all paid for the time they spend with him.

My eyes brimmed with tears.

I thought maybe he didn’t understand.  Maybe he was thinking only about grown ups.

I asked more pointedly, “What kids would you like to invite?”

Another thoughtful pause. 

“I don’t know”, he said quietly.  ”What about you and Dad?”

I had to stop.  Partially because I was choking back tears.  Partially because I didn’t want to push him any further and risk him realizing that he really didn’t have anyone to invite.  And partly because Chuck E. was heading our way and EB was clearly (and gratefully) distracted.

In years past we’ve just invited lots of kids from the Autism community, and kids from Pre-K too.  Kindergarten is different.  I don’t think he really knows anyone well enough to consider them a friend.

He seems okay with it.  Which begs the question as to why I’m not.

Am I projecting my hopes and expectations onto him?  Should I be forcing something that should just come naturally?

We have three months to figure out our game plan.  I’m sure I can pull together a great group of kids.  I’m just not sure if it’s more for me or for him.

I do wish that I could make the world look past the emotional and social struggles he has and embrace him despite  because regardless of his differences.

I guess we still have a long way to go in the fight for inclusion.

We get these amazing opportunities sometimes.  I guess that’s one perk of being so open and “in your face”.  ;-)

Starting today, a photo journalism student has begun shadowing EB for a photo documentary.  She came with us this morning to school, then came back tonight and got some shots (some of a really unfortunate meltdown).  Then again – isn’t that the point of doing a documentary on Autism?  To portray the good and the bad in full light?

After I stopped wondering how many chins I had in the photos and if my underwear were slipping into yoga pants no mans land.  I just went about our day, our night, our life.

It’s a beautiful gift – this documentary.  Maybe it’ll change the perspective that some have of children with Autism.  Maybe it will help those skeptics to recognize that “high functioning” is the greatest misnomer of all time.

It won’t solve the problems we’re facing directly, though it’s a great distraction.  While I believe EB is stabilizing, things are definitely not easy for him.

If there were ever a status quo (and I can’t say that there was) we aren’t anywhere near baseline.

I was at the hospital today.  Sleepless nights and many deadlines both professionally and personally have taken a toll.  I’m just run down.  My visit was prescheduled though, with my psychiatrist.  Who told me that he couldn’t believe how “great” I am doing considering.  Then reminded me that pills can only do so much.  The hard work just has to be done.

While I was there there were two new mothers waiting to be discharged.  Sitting in the foyer with their teeny tiny babes, exhausted but  gorgeous as they basked in life’s purest miracle.  I remembered the day I sat in a wheelchair waiting for Gus to bring the car.  Holding this precious life that I was somehow responsible for – having no idea what to do.  Can I sleep when he does?  What if he stops breathing?  What if he has an unsightly birthmark?  What if is he deaf?

What if my milk doesn’t come in.  (It never did really).  What if someone finds out that I failed at breastfeeding?  What if I drop him?

When he was six weeks old I was at an Autism Society fundraiser for work.  I stared in absolute horror at the parents desperately trying to connect with their children.  I cried.  I knew nothing of Autism.  I saw these children as empty.  I saw these parents tirelessly fighting a futile battle.   I begged god not to let my Peter have Autism.

I guess I remember this so vividly because of the irony of it all.

I don’t see those parents as fighting a futile battle anymore.  I am not fighting a futile battle.  I am winning the battle every single day.  Every single time  my child speaks.  Or makes eye contact when someone is talking to him.  Or can lose a game without injuring himself or others.  I’m winning.

My child isn’t empty.  In fact, he’s so full of life that I cannot possibly comprehend.  That’s the thing you see, our kids are treasure books.  They just might not be in a language we can read.   Or some of the pages might be stuck together or ripped out.  But there are still unconscionable treasure to unfold.

For everything we’ve lost this past month in supports – financial and ethereal – we’ve gained a new appreciation for our own strength and resiliency.

I do believe a picture is worth a thousand words.  I believe that Julysa, our photo journalism student, can capture EB’s story in a way that I couldn’t do with a thousand words (or more).

I wonder what it will be like to see our lives through the eyes of another.

I wonder if those who see these photos will think  ”that poor child is empty and those parents are fighting a futile battle”?

I’d like to think not.  Because I’d like to think that the world is more enlightened than I was nearly 6 years ago.

You can learn more about Julysa at http://www.julysasosaphotography.com/

This week “Everybody’s Boy” made an impact.  The Open Letter I posted about Autism insurance reform went”viral”…or at least as viral as anything about Autism insurance reform could go.

A dear friend, Clara’s mom, blogged about it on BabyCenter.   Then it showed up on People.com.  There has been lots of support, some healthy disagreement, and a little bit of pure vitriol.

The support and agreement overwhelmingly outweighed all else.

From time to time people say to me “I don’t know how you do it?”.

I never know how to respond to this.

Because I didn’t do this.  We did this.  Mostly you, actually.

So tell me, how do you do it?

How do all the parents of children with Autism continue to have the fortitude to fight – every single day – after sleepless nights and huge setbacks?

How do our family members and friends find the wherewithal to support us?  To love us despite our myopia?

How do our therapists continue to work with a child for years on end, while being just able to support their own families on Medicaid reimbursement rates?  Or the generous discounts they offer for private pay clients?

It’s love, I guess.  It’s passion.  It’s the inspiration and the hope that these children give us.  The hope that if we invest now – if we fight hard up front – that some day it could be our own version of “okay”.

While all of this was happening our world was imploding.  We are still trying to find the money to private pay (even with greatly reduced rates) for EB’s therapy when Medicaid ends soon.  The nights I have slept this week have been fraught with unnerving nightmares.

There was an emergency IEP meeting.  Our boy did not acclimate at all well to the transition to mainstreaming.  In fact he regressed – like a lot.  It was scary.  Him being so clearly anxious and confused and absolutely out of control.

We hit the reset button and he’s back in the Autism classroom  for now.  Our primary goal is to bring him back to where he was several months ago.  He is angry, scared, confused.

He’s hurting himself, lashing out at others, running away.

All things I foolishly thought were behind us.

That’s the thing with Autism.

There is no set trajectory.  Progress is gained and lost, sometimes it’s lateral, sometimes not at all.

How do we do this?  I don’t know.

But I do know that it’s not a special power we have.  In my case, this is what being a mother is.  I don’t know any mother that wouldn’t fight for her child – some of us just have to fight harder at times.

The only sage wisdom I can offer comes to you courtesy of PBS Kids.  While watching “Super Why” the other night a phrase resonated with me.  I wrote it down on my hand – because it was dark and I couldn’t find any paper and I had a sleeping little boy in my arms.

When I woke up the next morning, at 1:15 a.m. with a very anxious and definitely-not-going-back-to-sleep-child – I read the words through bleary eyes.

Breathe.  Believe.  Begin.

These past few days it’s stuck with me, this preschool lesson clearly meant for me (and maybe for you too).

Breathe:  Don’t let anxiety get the best of you.  The outcome might be insurmountable but the task at hand probably isn’t.  Breathe.  Take a walk.  Make a phone call.  Read Us Weekly.  Do some yoga in your office (yes, I did).  You might feel like you don’t have time, that you can’t lose a moment working, that everything is falling apart right now and only a miracle can make it right…

Breathe Anyway.

Believe:  Even if you can’t believe in yourself.  You can believe in your child.  You can believe that the fight is worth it for them.  You can believe that this is bigger than you and you don’t have to do it all (although it often feels like that).  You just have to do your part in that moment.  If you wait for the confidence of an army, you’ll be waiting forever.

Believe Anyway.

Begin:  Know this, you’ll never be adequately prepared.  No matter how many binders or reports, or letters of support you gather.  No matter how many hours you spend at Kinkos printing “whitepapers” on your child.  You’ll never be 100 percent ready.

Begin anyway.

That’s it.  It’s all I have.  It came from a children’s show.  Yet maybe more of my wisdom should come from children.  Because every single day, my child tries with all his might to meet the expectations of this world.  It’s a lot harder for him than it is for me, but for the most part he does this with great success.

Maybe he understands better than I do how all of this works.

Breathe.  Believe.  Begin.