Everybody's Boy

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.

I’m humbled that my post “An Open Letter to the North Carolina General Assembly” received such a positive response.  Over 2000 people have viewed it in these last few days.  Many have shared it on Facebook and Twitter.

On behalf of all the Everybody’s Boys and Girls, and the parents, grandparents, siblings, aunts, uncles, therapists, friends and teachers who love and support them – I thank you from the bottom of my heart.

How can you help?

I’m afraid I don’t have any easy answer. Legislation has been in the works for several years.  The climate for it right now is challenging.  Many organizations are advocating for change, but there are a lot of pressing issues impacting children (and adults) with Developmental Disabilities in our state right now.

Here’s what you can do.  You can contact your local legislators.  The link below will allow you to search by zip code to find out who they are if you aren’t sure.

Who are my local legislators?

You can call them.

You can write a letter.

You can make an appointment to go speak with them.  I can go with you.  Or I can find someone in your district to  go with you if you want.

Letters are still the easiest and most effective way to reach your legislators about an issue.

If you can take the time to write one letter.  Or to draft and email and send it to your entire legislative delegation.  That would be huge.

Here are some talking points to keep in mind.

The Senate Bill (for your Senator’s reference) is SB 115 and the corresponding House Bill (for your Representatives) is H826.

Here they are.

We want to encourage support for these bills.  Ask for them to be brought to the Health and Human Services Committee and then to the floor for a vote.  Ask them to contact the committee chairs and tell them they support this legislation.

Explain why this legislation is important to you and our community.

• 1:91 individuals have a diagnosis of Autism Spectrum Disorder.  (Autism Speaks)
• Children with Autism are not eligible to receive therapy through their parent’s private insurance.
• The only insurance that provides the level of coverage they need is Medicaid.
• Families are living in self-imposed poverty to qualify for Medicaid so that their children can receive life saving therapy.
• The Community Alternative Placement (CAP) Waiver that provides Medicaid and community based services is underfunded and thousands of children remain waitlisted.
• Without early intervention and evidence based therapies many children with Autism may not gain the skills they require to live independently.  The cost of institutionalizing these children as they reach adulthood will be an extreme burden on the state’s Health and Human services once they are adults.
• Over half the states in the country have already passed legislation requiring private insurance company’s to provide adequate coverage for individuals with Autism.
• More access to private insurance for families will help them be more self-sufficient, earn more, pay more taxes, and most importantly not be required to rely on government-funded programs like Medicaid.

I am sure there are many more talking points.  You can pick and choose.  If you need help feel free to email me at everybodysboy@gmail.com

Most importantly, keep sharing!!!

Right now, my Everybody’s Boy needs his Mommy to make dinner.

Please take the time to send a letter or an email.  Or make a phone call.  Or an appointment.

If you have any other talking points let me know and I will add them.

Debby Torres