In this midst of the most horrible, seemingly insurmountable trials we find the things that are most valuable to us. We find our courage. We find our strength and we find our family.

I’m a strong believer that more than the family we are born into, the family that we choose for ourselves sustains us in our darkest hours and edifies us through our most spectacular triumphs.

I don’t cry often.

I don’t let my guard down.

I don’t like the vulnerability of it all.

Keeping up appearances is what I do for a living, you know.

But if I know anything for certain – it’s that it is a gift, a serendipitous showering of manna from heaven, to connect emotionally with another human being. And I, for one, believe that allowing ourselves to be raw, organic, and absolutely honest with another person is the closest to god we will ever be.

That’s why our hearts tread carefully.  As we grow, as we age, we become more careful about giving ourselves.  We know the pain of rejection.  We have licked the wounds of judgment.  We are hyper-vigilant to venture towards towards the summit – knowing full well that were we to slip – it would be a long way down.  Our hearts might not survive such a tumble.  So we take short-cuts and avoid challenges and we don’t scuff our knees.

It’s not that simple though.  Because when we don’t take emotional risks the damage is far greater.  In place of the blood and bruises is substituted a horrific paralysis.  Numb and alone, we lose the ability to seek, to feel, to trust others.

If I had one “pearl” of wisdom, I would remind you that love is worth the risk of rejection.  Friendship is worth the risk of failure.  Being true to yourself, being part of the human experience, is worth risking everything.

Because, ultimately, our time on this earth is short and what we do every single day to enrich our lives and the lives of others is our legacy.

So for old friends and new, for those I lost and then found again, and for those yet to come – thank you for teaching me that unconditional love exists throughout our universe.  Thank you for loving me despite (because of) my shortcomings.  I only hope that I have returned to you a fraction of the joy you have brought to my life.

And to Ronnie, at 21 you are years wiser than me in many ways.  Your friendship is something I value intrinsically.  You have touched our family in ways impossible for even me to express with words.  You’ve found your calling and though the next step is a big one, it’s the right one.  The true connections you’ve made will stand the test of time and distance.  You will always be one of the biggest players in the “Everybody’s Boy” story.

There’s something worse than having your child spiral completely out of control.

There is something worse than then harming themselves and you.

I know this now.

It’s seeing fear in your child’s eyes.

It’s hearing the uncertainty and insecurity in their little voice the moment they realize that they don’t have control over anything, even their own little body.

It’s watching them internalize that they will struggle today and likely everyday  for life – in some way big or small.

It’s knowing that you are impotent in calming that fear in them.

I don’t cry often.  I have become accustomed to rolling with the punches and moving forward.  Plus, I take a lot of Zoloft, and I’m pretty sure I’m operating on emotional autopilot most days.

Two days ago I cried.  I cried when my child begged me to stay home.  I cried when he asked me in the car fifty times if his friends were coming.  I can’t even articulate how it sounded – so desperate – so lost.

“Are my friends coming, Mom.  Are they coming?  Are my friends going to be there?”

The need for structure and control, a need I know so well myself, taking hold of his little body and seizing.   Requiring me to pull off the road, already late, get in the back seat and physically write a schedule.

1) Drive in the black car with Mommy.
2)  Listen to “Cheeseburger in Paradise”
3) TEACCH at the Friday Center with your friends.
4)  Mommy comes back.
5)  Mommy and P go in the black car.
6)  Home.  Just Home.  All done.  Finished.

P loves TEACCH.  It’s probably his favorite place to be – EVER.   He knows the teachers and the helper and most of the kids.

He generally craves being in the spotlight.  He loves to be the center of attention.  But lately, there has been a shift.  He’s starting to become more aware, perhaps of his differences, or perhaps of ours.  He’s starting to fear the unknown – to  become weary of all of the work he does every single day to fit into OUR paradigm.

He needs me in different ways.  He needs to feel that he can trust me when I say everything will be okay.

But we all know that even in the most calculated and structured environment that success is not always inevitable.

Yet in this moment of falling apart for P, I have somewhat found solace in acceptance.

Peter has Autism.

You might wonder why writing that was such a big deal to me.  You might think I’m sort of nuts, having championed the cause for over two years, having written about Autism on this blog for just as long.  Being Autism super-Mommy and all.

You  might wonder why writing those three words nearly caused me to vomit.

It’s because, until this week, I didn’t fully own it.  I was walking the line of denial, albeit seemingly unknowingly.  I felt so much like a fraud.  Here I was with this engaging, intelligent, outgoing, verbal child.  Children with Autism couldn’t possibly be these things.

I would ask ad-nauseum to all the experts and friends “Do you see it?  He does have Autism right?”  And they would always look at me with pity and perhaps a bit of confusion and say “Yes, Debby, but he’s doing so well.”

I think they must think I have Munchhausen’s-by-proxy or something.

I know I did.  I mean I was thinking what kind of sick woman WANTS her child to have Autism.  Why do I keep wanting to hear it?

I realize now that I didn’t want to hear it.  I wanted to hear “No, Debby, you are just a crappy parent and if you do x, y, and z it’ll be okay.”

I thought what about these poor children who really do have Autism, what kind of disservice am I doing to them but living my life as a fraud.  Pretending to live what their parents live.

All the while I was fighting to make sure we never missed a therapy session, he had every single opportunity, “just in case”.

Because I am the type that pushes forward in the face of adversity.  I plow ahead without letting myself feel.

And then, one day, two and a half years later…I slam into an emotional brick wall…it’s real.  It’s really real.  It’s not going anywhere.  He’ll compensate I’m sure, but he’ll have to work 100x harder at everything every single day just to fit into our idiotic and not at all malleable society.  He’ll miss opportunities because of ignorance.  He’ll inevitably find himself alienated and under-appreciated in more situations than he should.

I can’t do anything about it.  I can’t fix it.  I’m not even sure how I broke it.  And I know that I didn’t break it, but I am a mother and I will always feel that responsibility, that guilt.  No matter what science finds out.

I never wanted to see my child paralyzed by fear.  I never imagined feeling so inept, raw, helpless.

I never thought my aha moment would come in a grocery store parking lot.

I never thought I’d say the words “Peter has Autism” with conviction and bittersweet acceptance.

It’s amazing what a routine Thursday can throw at you.

DISCLAIMER:  What I am about to write might not be popular, cheerful or edifying in any way.  I feel burdened to share though, because it’s difficult to understand if you don’t live it every day.  Our circumstance is not that of every family with Autism, but you should know that it’s pretty typical.  I began this blog as a cathartic experience, but somewhere along the lines it became about advocacy, and that’s why I feel it’s my duty to share a true picture of our unique life with the world…and it isn’t always unicorns and rainbows.

DISCLAIMER II:  Any behaviors I might describe negatively in no way reflect upon my love or admiration for my child.  He’s amazing, and if anything, my anger stems from the injustice of the struggles this disorder inflicts on my beautiful, intelligent and mild tempered little boy.

A typical day begins between 3 and 5 a.m.  P finds his way into our bed generally around the end of the Daily Show, and depending on how well we manage logistics, often my husband is relegated to the couch or the twin bed in P’s room.  The average wake up time in about 4, P will jump on me until I wake up and tell me to turn on the television.  If I don’t comply he’ll scream repeatedly “watch a show” until I acquiesce.  Sometimes I can distract him briefly with the iPod Touch – but lately he’s been really into Nick Jr. The top of the stairs in gated so he cannot leave the bedroom area.  On occasion I fall back asleep for a brief while only to wake up to shreds of paper, toys, ink on the wall, pee on the carpet, and the other morning a broken television (actually, I was awake for that, just not fast enough).

If we’ve carelessly left a closet door open, especially the one in his room – the bookshelf will be emptied and used for “climbing” to “reach” god knows what.

Needless to say, I try not to fall back to sleep, because the fallout is not worth those extra few minutes of broken rest. When I can I take him downstairs after he wakes, so as not to wake up Daddy who has to work at a real job in the morning.

Downstairs we watch TV while he looks at books, paints, colors, etc.  I try to stay close, because if he gets frustrated things will be destroyed.  He will bite and shred a book, or throw paint all over the carpet.  Again, it’s not that he’s trying to be disobedient.  He just truly cannot control his impulses.

He likes to go to the refrigerator.  It is child locked (as is everything in our home) but he is smart and can open it.  He will take food out of the fridge.  Today he decided he wanted to make fruit salad and took out half a watermelon, pineapple, grapes and strawberries, and climbed up the sink to get bananas off the counter.  He then searched for a “knife” (those are hidden by the way) to cut up the food.  In the meantime he found an avocado in the fridge and bit it, discovered that he didn’t like the texture of the skin, and spit it all over the floor.

I helped him make a “fruit salad” which he ate in front of the TV.  Except for the strawberries.  He didn’t like them this time and ground them into the carpet in the living room.

Then it was time to get ready for school.

I chase him around and dress him.  He can physically dress himself, but usually I have to do it for him because he’s not able to focus.  As we leave for school the cat runs out the front door.  I am torn.  I need to chase her down, but it’s a risk to leave P.  I made the choice to grab the cat.  It was the wrong one.  P bolts up the stairs and into the parking lot which is busy with neighbors leaving for work.  I sprint to get him and carry him back to the car.  I scolded him when I reached him.  I told him I was scared when he ran away.  He laughed at the affect in my voice.  It didn’t register.  I pick him up and put him into the car-seat and buckle it.  I give him some milk and turn on the car.  He screams for his “Old McDonald” songs.  I find the CD and turn it on.  Then I go to gather my belongings scattered amongst the yard and find the cat to return her to the apartment.

He is quiet on the way to school.  I think he’s prepping himself for an overwhelming day.  He is in extended school year (summer school) to help maintain continuity in his routine.  Were he to be away from school for too log he might regress and he would spend an entire semester readjusting to the classroom.  He had a wonderful day there.  He practically always has a wonderful day at school.  I’m glad that the structure of the classroom and the expectation of his teachers has a positive impact on him, but I also find that he works so very hard to hold it together all day that by the time I pick him up he is ready to melt.

Today wasn’t too bad.  As I was saying farewell to his teachers he bolted out the door of the classroom and down the hall.  He often does this.  I catch him at the end of the hall and carry him the eternal distance to the car.  My back begins to cramp once we get near the car so I put him down to walk.  He lays down on the pavement.  I do a quick stretch and pick him back up.

Most days we have at least one therapy session in the afternoon.  Yesterday we had Cooking Class and Swimming.  Fortunately my in-laws are very nearby and are amazing with him. They’ve helped care for him since he was an infant and can work miracles when I am at a loss.

Today was a light day.  We only had speech therapy, at home, in the afternoon.  Sometimes light days can be more difficult though.  There is more unstructured down time.  We came home and P wanted a peanut butter and jelly hot dog.  I know this means he wants a hot dog bun with said condiments.  I learned this yesterday.  Through much trial and error.  While I prepare the “hot dog” he dumps the bag of popcorn I was snacking on onto the floor.  I give him the sandwich and begin sweeping it up.  He screams that he didn’t want peanut butter and wipes the sandwich on the wall before getting it on his hands and throwing the sandwich ultimately in the toilet.  I know better but I ask him “why”?  He is too upset to even comprehend.  I wash his hands.  Flush the sandwich and get him some goldfish.  Sometimes we just need less talking.

I need to phone the apartment office as the air conditioning isn’t working so I go to the kitchen.  While leaving a voicemail he has an accident on the carpet and puts the kitten in the toilet.  I get a towel and the Folex carpet cleaning solution (best stuff ever, please send me a lifetime supply) and get to work.  Then I dry off the cat – no wonder she runs away all of the time – and dress him again.

He isn’t in the mood for speech therapy today.  He’s tired having been up and on the go for over 12 hours by the time his therapy starts.  He cries a lot.  But we consider it success because he continues to try to communicate even through the tears.  After speech I get the paints out for him and we paint while watching Olivia on Nick Jr.  He’s having fun until two colors mix together and all of a sudden he throws the plate I was using as a palate.   Folex and I meet again.  I wash him up and despite protests he allows me to put away the paints.  He requests pizza for dinner, the circle kind.  I am drained.  I put away the fresh dough I was going to use for pizza night and pull out the frozen Trader Joe’s kind.  I bake them in the oven, which has safety locks on it, but have to stay near the over because he wants to open the over and “check them”.

In the living room I hear a crash.  He has pulled the curio down trying to get to a toy he’d dropped in back.  My heart stops.  I must get a wall anchor for that thing.  He’s stronger than I thought.  But he’s okay.  He is completely unphased.  He grabs his toy from the now open space and continues towards the television.  My heart begins beating again – really fast now.  I stand the curio back up, no time to take inventory of the treasures of another life that are shattered.  He’s off to the kitchen.

I make it to the oven before he does.  I occupy him with ice cubes and get the pizza out.

Daddy comes home.

All is relatively calm (of course).  I wonder if I ran out the back door would he blame me?  I recount the highlights, but he doesn’t need to know the details.

We talk about how we are going to pay the bills this month (today) and if either of us have had any luck in the job search.  He says he’s happy that the air is fixed.  I fix P a plate with the pizza and Daddy goes upstairs to change.

P takes one look at the pizza and throws it in the garbage.  He doesn’t like circle pizza.

I give him a banana and some goldfish and sit down to check my email.

A minute or two late I realize it’s quiet.

He’s naked.  There is water on the carpet.   He has four plastic cups with strawberries and water in them.  He was making “strawberry lemonade”, I’m informed.  I don’t know how I missed that fridge trip.

I usher him upstairs to the bath.  He brings the ice cube tray.  Bath-time is uneventful.  I need to wash his hair but I’m not up for the fight tonight.

I dry him off and get him to his room.  While I am getting out his pajamas he dumps the toy-box and climbs inside.  I wrangle him out and he runs downstairs wet and naked.  I call for Daddy to help me dress him.  We get him dressed and give him a “special milk” (with melatonin in it) and lay him down on the couch with Raffe and a blanket.  Tonight he’s pretty tired.  He doesn’t fight sleep much at all.  He watches Nick Jr and is out on the couch around 8.  In a few minutes we’ll take him upstairs and place him in his bed…where he’ll be until about 11: 30 p.m. when the whole day will start again.

This might be the longest and most mundane blog post I’ve ever written.  But I wanted to kind of detail a day in the life.  I think I did this a few years ago – though our struggles were different then.

Still there were many laughs today.  There were a lot of hugs and kisses.  I think that because it’s so insanely hard that the successes, the moments that show the true beauty of our reality, are so much sweeter.

Whenever I find myself thinking “this is so incredibly difficult”.  I can’t do this.  I can’t function.  I stop and remind myself of how it must feel to live in a world not at all friendly towards you.  A world not designed with you in mind.

And I think about how hard he fights to make our silly little world work for him.  How he works so hard to conform to our social standards.

I think I might be a little out of sorts and unglued too if I spent the majority of my life making my mind and my body go in completely different directions then they were programmed for.

I’ve realized though that virtually everything we deal with is superficial compared to what our children struggle with every moment of the day.  I can slip away for a run and clear my head.  I can have a drink with my girlfriends and regroup.  But he can’t – at least not yet – and though I believe he will some day, until that day comes all I can do is provide gentle guidance and unconditional support.

And keep him from drowning the cat in the toilet too.