I don’t think she’s mind my sharing her photo.  Although, I didn’t ask her.

You see, I couldn’t ask her.

Because she’s dead.

I know, I can’t believe it either.  How can someone so effervescent with life be gone?

My coworker Krysta was picking up frames at a local thrift shop to hang photos in our new office when she met Nancy.

It seems that at some point Nancy’s photo and the frame that held it were donated.

Krysta couldn’t bring herself to leave her behind.  She brought Nancy “home” to our cozy little office where we eat-sleep-and-breathe inclusion.

It might’ve been a few days before I notice Nancy’s presence.  I’m not terribly observant.

I remember walking around the office to stretch my legs and noticing the beautiful frames Krysta had thoughtfully acquired.  I remember being drawn to Nancy’s photo.  I asked Krysta who she was.  We work with a lot of people each year, but I had seen most of the photos we planned on framing before, and I knew that I would’ve remembered that face.

Krysta told me that she had picked up the frame at a thrift shop and that the owner had told her that the name of the woman in the picture was “Joan” and that she had died and somehow the photo ended up there in an estate sale.

We both agreed that it must be terribly sad to be “forgotten” like that.

As tears began to brim, I made my coworkers promise that they would never ever donate me.

We just kind of kept “Joan” around.  Until one day the frames began to fill up with faces that we knew and we needed “Joan’s” frame.

It was then that Krysta discovered, on the back of the photo the words “Nancy, 1990″ and tucked her away, presumably, in the safety of her office.

A few weeks later I found myself a complete and disheveled mess.  Things with EB were not going well.

I was struggling.

One morning I stumbled in to the office after a night of little sleep, not at all optimistic about my ability to put a dent in my to-do list.

As I off-loaded my laptop bag and flipped on the light I was greeted by the most ethereal smile and the following words:

It’s true that I have never seen the kind of happiness that Nancy displayed.  She genuinely looks as if she smiled all the time.  It’s as if joy came as naturally to her as breathing.

Where does that joy come from?  

Sure, I feel joy.  I feel joy daily.  But I don’t exude joy.  I am not, by default, a joyful person.

I am an optimistic person, a resilient person, a thoughtful person – but I am not a joyful person.

Nancy’s home remains in my office.  Though, I might consider sharing her around the when my colleagues need that extra boost.

I want to be the kind of woman that Nancy was.  I want someone to look at my photo 22 years from now and see unabashed joy.  Joy that is contagious.  Joy that is inherent.

I find myself looking to Nancy in everything I do in life these days.

“What would Nancy do?”

Would Nancy eat that second cupcake?

Would Nancy use the Oxford comma?

Would Nancy wear yoga pants on casual Friday?

The truth is, I don’t know what Nancy would do any better that you do.  But I like that her presence gives me pause.

I have to wonder if perhaps Nancy came to me on purpose.  Maybe she knew that her portrait would shape my life in some small (or big) way.

And maybe that’s why she’s smiling.

It’s true.  I have the best job ever.

I couldn’t be happier in my career.

It’s really a funny story, though, how it all evolved.

I bet you wonder what I do all day.   Or maybe you don’t and that’s okay too.

Um…if you are the latter of the two you should probably stop reading now.

Also, it’s not really okay if you don’t wonder.  I actually am pretty offended.

When I decided to start working in non-profit in 2005 more than a few people thought I was crazy.  You don’t work in non-profit to make money.  I mean, it’s  ”non-profit”.  It’s right there in the title.

You certainly don’t go into non-profit if you are a Public Relations professional.  Unless you’re totally cool with defaulting on your student loans.

Plus, the thing is, there aren’t really Public Relations professionals in non-profit.

There are Development people though.  Lots and lots of Development people.  All who probably studied Public Relations or Journalism or Marketing or Advertising or maybe even Quantum Physics.

All who woke up one morning and thought.  ”I’m going to change the world!  I’m going to work in non-profit.”  Partly because of blind idealism and partly because that’s what 20 something hipsters do.

I know this because I was one.

Ah yes, we idealist hipsters who spend our days writing grants, making presentations to rotary clubs and asking our weary friends and family for the millionth time if they “want to buy a raffle ticket?”.  Well, do you?  Go on now, I’ll wait.  

Sometimes we get to do Outreach (that’s non-profit speak for “Marketing”) which is fun…and kind of a teensy bit like Public Relations (or so we tell ourselves).  We get to think up and plan fun events and make brochures in Word with clip art.  Or order 10,000 mini-frisbees printed with our organization’s name and website to hand out at community fairs.

Oh but the events.  Those are so much fun.  It’s when you can really let your creativity shine.  Like that one time (hypothetically speaking of course) that there was a county-wide air potato collection fundraiser and “you” thought it would be really cool to take part in to raise money for “the kids”.  You thought you were so clever  calling it “Taters for Tots” until you learned that your Executive Director did not share the same enthusiasm…as evidenced by the look of utter disgust that cut right through your soul as you cheerfully passed out fliers at the Board of Directors meeting.

You know, I wasn’t quite honest.  There is some Public Relations work involved.  About two or three times a year you get to write a press release and send it to an outdated media list and have about 77% of the emails bounce back.

…and maybe you will be interviewed on an AM Talk Radio program that will broadcast at 4:30 a.m. on a Tuesday and you will consider waking up the whole family to gather around and listen to it but will sleep through the alarm because sleep is way better than hearing yourself on the radio talking about how you gave a bunch of backpacks full of school supplies to inner city kids to help them get “ready for school and ready for life”.

But you will totally put that shit on your résumé anyway.  You’ll also Google to see if it qualifies you for membership in SAG.

Anyway, this is not at all what I planned on writing about tonight.  I have a really great story that I just can’t seem to make segue, so it seems I’ll be posting again within the next few days.

While you wait, feel free to buy a raffle ticket.

Ergo, I have had a hard time finding the energy to blog.

So instead of actually writing something, I made a meme.

You’re welcome world.

Sometimes you stumble at every step, backwards, sideways.  Sometimes you even stumble in the same spot over and over again.

So there you are; knees scraped up and out of breath.

And they are waiting for all the things you promised you could deliver.

But you didn’t and now they hate you.

So you wonder where exactly you may have gone wrong when you were trying to be the best at everything.

Of course, you must know that where you went wrong was in trying to be the best at everything, because nobody can do everything well.

And you – well at least right now – you can’t do anything well.

So you have to choose.

Do you give up on everything or do you give up on perfection?

Either way some part of you loses – or at least is less than you’ve expected.  Now you have to tell everyone that you really are less than you promised.  That you are just a mere mortal.

That sucks.

I mean the realization that you are a mere mortal sucks.  But also, the telling everyone that you lied part too.

It’s probably a good thing that they already hate you.   

It sounds so foreign to me now; one of those memories that you squash so much for so long that when you finally unearth it you wonder if it it’s even true.

Except it is true, and that truth is part of me, of my history, and consequentially of who I am today.

You see, I didn’t want children.

(and it gets worse)

I didn’t want children because I didn’t like children.

I kind of envisioned myself a career woman, independent, possibly involved with some emotionally unavailable, hipster-artsy guy that would never marry.  A small flat in some nameless city.  With cats (dogs are too needy).  Free to stay up all night watching television shows about forensic science while eating Chinese food in bed, waking well past 11 on the weekends, working fiercely during the week to get ahead.

I didn’t know a lot about kids, having grown up an only child.  I was incredibly shy around my peers growing up.  Hiding behind my mother on the chance we ran into a schoolmate in public.  I preferred spending time with her friends.

It’s just that kids are so transparent…so what you see is what you get…and I have always been so “what you see is exactly what I want you to see and no more”.

When I was 23 something happened that changed how I felt about children.

It’s not the time to tell that story, but I plan to soon.  It needs a lot more crafting and soul-searching than I can manage at this moment.

But you should know that this event changed me in every way imaginable.  Without this event, there would be not Everybody’s Boy.

For that, despite the unpleasantness of the experience, I am eternally grateful.

In fact, by the time Gus and I met, I only wanted children.  Three –  maybe four – a whole Duggar-load if the years were on our side.

I didn’t fear children anymore.  I saw them and the world through them in a way I never dreamed possible.

Then Everybody’s Boy was born, and though in those early years I struggled to find my place as his mother, I eventually embraced my new role.

In the years since I’ve become so emotionally enmeshed with this perfect little soul that it is impossible to comprehend my life as anything else other than “Mommy”.

Like all mothers, every single thing I do in my life, is strategic in ensuring his future has every opportunity availed.

I don’t think it’s any more or any less that way because he has Autism.  I’d like to think that I would’ve been the mother I am today even if he didn’t  have special needs, but perhaps I’m a little more compassionate, a little less quick to anger, and a lot more patient because it’s the only way I know how to be.

I cannot imagine what life would’ve been like if I’d stayed on the trajectory I was on 10 years ago.  I’m glad I won’t have to.

And while there will be no Dugger-sized family reunions in our old age, I firmly believe that if I were to only have one chance at bringing another person into this world – I couldn’t have been more fortunate that it was him.

Because for everything I thought I would lose by becoming a mother, I’ve gained others ten-fold.

When Everybody’s Boy tells me that I am his “specialist Valentine ever” – I can’t imagine that any other experience could ever trump that.

I still struggle to make small talk with neurotypical children, but thankfully in my world, those opportunities are few and far between.  ;-)

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.

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/

I need to write.  It’s been a while.

I need to share.  There’s been a lot.

But I’m really tired.

Not the “Wow, I could go for a nap, tired.”  Though, there’s that too.

But the kind of tired that only parents of children with special needs know.

I call it battle fatigue.  Not out of any disrespect for our military friends.  But because I can’t liken it to anything else.

Over the past month we have watched out child practically shut down and deteriorate before our eyes.  It started with a long winter break, as setbacks often do, and spiraled into “scary crisis” during the first two weeks of school.

Perhaps it was complicated by the change in Peter’s school environment.   Relatively minor, we thought, but enough to absolutely knock us all on our backs.

In the general education class he began to act out.  Climbing on desks, screaming, crying.  Biting.  Hitting.  Running.

His team began adding back supports, and called an emergency IEP meeting.  He moved back to the self-contained classroom.  Even in that classroom full-time he continued to deteriorate.  Days of nothing but crying and screaming…and running.  Did I mention the running?

Meanwhile things at home were taking a similar turn.  He was inaccessible.  Shut down.  Extremely anxious.

Since finding out that we are losing his  insurance I’ve tried to find a giant pot of money so that we don’t have further disruptions in his routine.  I spent my days fighting the Autism.  Trying to exorcise the giant intruder from his little body.

I spent my nights collecting letters from the community and preparing a request for emergency assistance to the state, working with his therapy team to trouble shoot, and when I slept – fighting terrifyingly graphic nightmares.

It’s like waiting for a fever to break.  When your child is “cycling”.  You know that it will loosen its grasp, at least that it always has before, but you don’t know when or how much damage will be done in the meantime.

I don’t know what it’s like to be a parent to a child without Autism.

It’s just different.

It’s horrible.  It’s exhausting.

It’s a war.  A series of battles.  Except you’re always losing.

You can never do enough to defeat it.  You can only hope to keep it at bay for a while – to offer some respite to the precious child you love more than life itself.

You can write letters and blogs and make phone calls and pay thousands of dollars for therapy, and your work may help you win the battle, but you can be absolutely certain that there will be another…and another…

I wish I could find the presence of mind to really write about what the past month has been like.  What it’s been like for Gus and I, for our parents, for EB’s teachers, therapists and friends.  But I’m too tired.

The worst part is, we’ll never know how hard it’s been for our child.  Because he can’t tell us.

The only thing worse than fighting a never-ending series of battles for your child, is watching your child fighting those same battles, only without the solace of being able to help ease his pain.

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.

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