Stretch marks are beautiful...

He's not stupid, he's autistic...

Happy Mother's Day!

Happy Mother's Day...

Dear Mommy,

They say that today is the day we should celebrate you. I just don't think that one day is nearly enough, considering you give so much of yourself every day of the year.

In the morning, when your angry alarm yells, you pull on your tights and your cape and soar into the air to survey your domain.

It's not easy being a superhero.

You have to battle monsters and demons, most of them trying to take me away...leading me down a dark path. They scare me and yet I can't resist them.

But, you never give up.

You hold my hand, give me a warm smile, and guide me through the cloudy darkness. You know I can't do this alone. I can tell that scares you, but it doesn't stop you.

You keep fighting for me.

I admire you. I hope, one day, to have children of my own. I don't know if I will, but I hope I am as good a parent as you are.

I am so very grateful for you.

I know I don't say it enough or even at all, but always know that I love you. You are my guardian, friend, confidant, warm blanket, and safe place. You show me the world, a world I wouldn't have seen without your guidance.

Thank you for being my Mommy.

Happy Mother's Day

I met myself for lunch today...

I met myself for lunch today. 

Pre-children, my eyes had a different look to them: open, naive, trusting. I shook my hand firmly and sat down for a turkey sandwich and a quick chat. 

My younger self was already analyzing me. Hehe. As if my demeanor and body language would give him everything he would need to know about his life over the next 8 years. 

I smiled and waited. 

He smirked at me. My wife is right, my smirk can be a little infuriating...charming, to be sure, but infuriating all the same.

He said "ok, so...it's hard, it sucks sometimes, but its worth it right?"

He wanted to encapsulate the experience. Categorize it so he was prepared and then face it head-first. I'll admit, I'm a little impressed by me. 

The waiter came by with our food and I took a drink before answering, allowing myself a moment to collect my thoughts.

I said "well, you're going to have two kids, a boy and a girl". He smiles. He always wanted that.

"Your son will be a lot like you. Impulsive, intelligent and funny. He will also have your talent for finding, getting into and getting out of trouble."

We both laugh. It's a little surreal.

He says "that's pretty cool. What does he look like?"

I forgot how important that was. Before you have kids, it's all about who the child will look like and which personality traits they'll inherit. I don't think I have even considered those things in years.

"You'll see. I wouldn't want to ruin the surprise." I say. "Just know that they are both beautiful and incredible kids. You're going to have a rough time when their teenagers." We share a smile.

"Your daughter is autistic."

I watch his eyes turn inward. A million thoughts all at once. Disappointment, fear, insecurity, hopelessness, and a little bit of anger.

Sad. I expected more from me.

"She will also be the single most important thing to ever happen to you. She will redefine your priorities, alter your perception of the world, and open your heart to more love than you thought possible.

Until now, you have been very guarded because so many people hurt you both intentionally and unintentionally. She will love you so fiercely and so genuinely that you won't remember what it was like to not have her in your heart.

She will make you a new person and you will love her with every fiber of your being."

He sits silently for a bit, watching me eat. I give him time to think.

As I finish my sandwich, I look up at him again. He is staring off into the crowd, tears in his eyes. There is a little girl a few tables away talking to her Daddy.

"One day." I say, "One day she will talk to you, share her ideas, and be just like that girl. Just don't give up on her."

He stands up. I rise with him.

"Thank you" he says and holds out his hand.

I gently push it aside and give him a brief hug.

"My pleasure. Have fun...I did." I say with a smile as I walk away.

"Ugly pig!"...

"Ugly pig!"

My daughter was called that by a girl at school this week. 

Ugly. Pig. 

Hard to understand the bullying and name calling when they're so young, so fragile. Obviously, if it was an adult that said this to another adult, there would be an argument or a conflict, but this was an NT 8-year-old saying this to an autistic 7-year-old. 

My daughter has, since this incident, broken down crying several times, hidden away in her room, and violently destroyed her glasses. She's also gotten destructive with chairs, cups and food.

Two words did that.

Hopefully, we can get her to understand that words are simply tools people use and can be accepted, challenged and discarded. They only have power if we let them.

For now, we will teach her more self-advocacy skills to give her weapons against those that would try to harm her emotionally or physically. It may never be enough, I can remember several times in my life when I was told something and it still stings, but she has no defenses at all.

I'll add "ugly pig" to the list of words that have caused me pain. I'll try to teach her to forget them and move on.

Before you had kids...

Before you had kids, did you feel sympathy for parents of autistic children?

When you heard, was your first reaction "Oh, I'm so sorry..."?

When you were a pre-teen, did you make fun of special needs children? Call them names, do 'impressions', use derogatory words with your friends?

It's ok. A lot of us did. 

In fact, many of us became more popular because other kids thought we were funny. Mostly because the focus of scorn and humiliation was on someone else.

There is a safety in that. An immunity that only comes from mob-like behavior. As if you are better, smarter and less flawed because you are pointing out the flaws in someone unable to defend themselves.

I am absolutely not condemning the 10 year old version of you. I get it. I said a lot of cringe-worthy things in my day that I would never say or even think now.

I suppose I have grown up, matured, become more aware, and taken responsibility for my thoughts and actions. My experiences taught me that my past ideals were far more flawed than my targets.

I'm not 10 anymore.

So, that said, why are there still so many people unable to make this change?

Experience plays a big part in it. Like I said, we still thought autism was sympathy-worthy prior to becoming immersed in it.

I suppose many people choose to remain 10 years old and they may never come around.

This generation of autistic children is going to break preconceptions, I just hope the cost isn't too high emotionally.

Because there will always be 10 year old boys, even when they're 40.

Kicking Bad Guys...

I had both kids and Mama Bear on the couch with me tonight. It was a warm, amazing family moment. 

We sang karaoke songs together and laughed a lot. 

During a quiet moment, I looked at the Redhead and Handsome Boy and said "I believe in both of you. I need you to know this. Whatever you want to do, whatever you want to be, I will always support you. Just don't give up. No matter what happens, no matter how tired, frustrated or scared you are, don't ever give up."

My son looked at me and said "Daddy, just like when I tried to kick the bad guy in the face for a million dollars?"

"Umm...yeah, buddy, just like that."

I know you...

I know you... 

I know that you like Baskin Robbins and Haagen Dazs strawberry ice cream, no strawberries, and no other brand.

I know you won't sleep until I cuddle up beside you and you hate sleeping alone.

I know you love to collect My Little Pony, Littlest Pet Shop and Moshi monsters. I know that you know how many you have and all of their names. You also like to play their games on the iPad.

The iPad is a safe place for you. You can block out the world, fall into yours and be at peace. I love when you do that, but wish you'd let me come in too.

You love to have your feet rubbed when you're stressed out. Who doesn't love that?

Your eyes will be the death of me when you're a teenager. I'm fairly confident the boys will flock to you. I can't stop them from loving you, I can just try to make them afraid of "loving" you.

You have the most amazing smile and laugh. I've seen you light up a room, brighten a stranger's day and get out of trouble all too often by just smiling. You have power in that, I hope to teach you how to use it well.

Oatmeal, chicken, smiley fries, and Domino's cheese pizza. Who knew they could power a person for 7 1/2 years?

Sad music makes you cry and the can-can makes you dance. So does Gangnam Style, Justin Bieber, Katy Perry and Taylor Swift. I know that you like it better when I dance with you and, like I taught your brother, a gentleman never refuses a dance.

You read better than your friends, can do math in your head, and are not afraid of speaking your mind.

You stop and smell the flowers. In fact, you often see flowers others pass by without a glance. I love that. I hope my daily flower to you instilled that perception of beauty.

You know that I love you. I know that you love me. There is no power, no disagreement, no event that will ever weaken or change that bond. You are my fairy princess and I am your champion.

Oh, and you are also autistic. It's true.

Tears...

"Daddy, I have tears."

These are the first words I heard this morning. She was sitting up in her bed when I walked in, with a little tear in her eye and a faraway look on her face.

I knelt in front of her, gave her a hug, and asked her why she was crying. No words, she just squeezed back.

These are the times I wish she could express herself more clearly. I know she wants to, I know she has the vocabulary to try, I just don't know how to help her get the words out.

So, I hold her for a while. I ask questions gently, trying to simplify things to make it easier.

"Did you have a bad dream?" (She shakes her head).
"Do you have owies?" (Shakes head).
"Do you just need Daddy hugs?" (Nods).

We hug for a little while longer, me kneeling on the floor and her on her bed, as I feel her body relax. I feel a shift in her energy, like a generator turning on inside her, and she starts babbling again. 

All thought of whatever made her upset is gone from her face.

I study her for a time to see if she is hiding her pain from me or if it is truly forgotten. Honestly, I just can't tell. She has buried it too well, hidden it too deeply.

It hurts that I can't talk about these things with her. I want so much to be able to help her, support her, guide her through the emotions she is discovering. I know the hugs and the fact that I am always there for her makes it better, but I could do so much more.

I want to do so much more.

I breathe, knowing that she and I have a long road together with many more emotional moments to come. She knows I will always be there, kneeling in front of her, arms open for a hug.

Therapy...

Hands touch yours, "put your hands down", moving them away from the toys. "Stop babbling." Hands pull you, "eyes, please", push you, make you do things. "Focus..." Hands on your arms, legs, shoulders, back. "Time to pay attention." Holding you still, "not right now", you don't want to be still, "don't do that", holding you still.

Frustrating, isn't it?

This is therapy. I would hate therapy.

If someone came to your home and did all of those things to you, they would likely be asked to leave and never return. Yet, we pay people to do this to our children. We even do this to them ourselves.

Not surprising that our children get angry, frustrated, and upset. You would, too.

I know, I know, we don't do it to that extreme. We're nice about it. Patient. We take the time to explain things, nurture them through the process, and encourage them when they do well.

But, do they see it that way?

Imagine you are watching the Super Bowl or talking to a long lost friend you hadn't spoken to in years and a Therapist started working with you. It wouldn't matter how patient, kind or understanding they were, they need to get the heck out of your face before you toss them from your house.

That's the perspective. 

Our world is uninteresting. We have nothing here that can properly supplant the amazing imagery happening in our child's mind. 

So, what does this mean? No therapy? Abandon the one thing that works? Allow our children to disappear into their world because it's more fun and beautiful?

Of course not.

The challenge I am facing right now is about balance. How much is too much and where is the sweet spot?

For the last two weeks, my daughter has opened up, connected, and reached out to those around her more than she has in the last six months. She has been actively engaging people, expressing her needs without incident, and trying, on her own, to develop her language.

Oh, and she wasn't receiving home therapy during this time.

She started again yesterday and had a major meltdown during and afterwards. She was also nervously licking her lips to the point of bleeding and she was no longer "aware". 

She had completely locked down. One day of therapy.

The therapy hadn't changed, the therapist was known to her and the methods were familiar to her. She was simply done. She wanted no more and was through being told what to do all the time.

Now, before I get a hundred responses asking which/what/who/how, I will tell you that we are transitioning from ABA to Adaptive Skills because she is ready to branch out. We also stopped therapy again today to give her a break and see how she responds.

"I'm lucky and Daddy's lucky." she said on the way home from school.

"Daddy's lucky to have you as his daughter." I reply.

(She nods) "Yeah...".

She was back. Clear as day. She had already been told that therapy was cancelled and she was open to opening up again.

I write this not to condemn therapy. Not at all. It has brought my daughter from the shadows into the light in so many ways. She would not have been able to have that small conversation with me were it not for her incredible therapists. I am forever grateful for them.

My intent is to illustrate balance. Know what is happening in the sessions, think about how it might affect you, listen to your child and their expressions, understand the impact and adjust accordingly.

We are changing my daughter's routine because she is ready for the change. She had been telling us, through meltdowns and babbling, that she has moved on from this style.

We are listening.

Boston Marathon...

You wake up and look outside...excited about the day to come. You checked the weather 3 times yesterday, but you still need to see it for yourself. Partly cloudy and 60's. 

Perfect day to watch the Marathon.

It's still early, the sun barely over the horizon, and yet you can hear your daughter stirring in her room. A small smile creeps over your face. She's excited about today, too. 

You sneak into her room and put your face next to her "sleeping" ear. You whisper "you awake?" and she starts giggling. She turns and gives you a big hug.

"I love you, Daddy!".

"I love you, too. Let's go get some breakfast, do some shopping and walk over to the Finish Line."

You hold her hand on the way to the Deli, a favorite of hers, and smile at all of the other kids walking in the street with their parents. Today is a Holiday for the kids of Boston, you hope they have fun out there. Images of frisbees with your father and Red Sox games fill your head. 

Today has always been a special day for you. It's always been a special day for your daughter, too.

You pick up a couple of egg, ham and cheese sandwiches at the Deli and head to the shops at Copley Place. You figure it will be a while and it's not that far to Boylston Street.

She decides she wants to shop for Summer dresses, your little girl is growing up. She grabs a few off the rack and twirls for you; you can't help but laugh.

You get some lunch from the food court and begin the crowd-filled walk to the Finish Line. You didn't expect it to be so busy, but everyone is polite, happy and having a good time. There's no pushing, no angry voices, even the cars seem to have lost their horns. You've missed the first finishers by a couple of hours, but there are still a lot of runners coming in.

You lift her onto your shoulders as you make the turn onto Boylston Street, but there's no room, so you move a little ways back from the Line.

Your daughter points and yells "I can see them, Daddy!".

Without warning, you are violently pushed to the ground and your daughter is sent flying from your shoulders. There is smoke and noise and people and wreckage everywhere. The sounds are overwhelming as you lift your head from the ground. You look for her, but can't see through the smoke. People try to help you, but you just want to find your daughter. She couldn't have fallen that far, right?

You run to the pile of chairs, tables and bent gate frames and hope that she's not under there. You start lifting, but it's too heavy. You scream for help, but your voice is lost in the other screams. As you turn your head to look for help, you see the yellow of your daughter's new dress under the wreckage 10 feet away, her hand sticking out from under a chair.

Everything stops. All sound, all movement. Nothing matters but that dress and that hand as you rush over and lift the chair.

She's not moving, she's not breathing, her hair covered in blood. Your daughter's blood. You pick up her limp body and carry her to the police nearby, screaming wordlessly for help. They quickly lay her on a stretcher and try to stop the bleeding. One of them looks at the other knowingly.

She's gone.

Your angel, your princess, the girl you tease every morning and kiss before bed every night is gone. You don't understand, you don't know what to do, you just want her back.

What did she have to do with this? Why did she have to die? What could she have possibly done to offend someone so much that they took her away at 8 years old?

----

I hope those who would think about perpetrating this kind of act understand the impact. I hope they think about the innocents and reconsider. I hope someone finds those who did this today and holds them to justice.

I hope this never happens again.

Princess Class - Performance Day...

So, this is it. The day is here. After several weeks of rehearsal, the moment has finally arrived. 

The Redhead performs today. 

As we are driving to the studio, she seems calm, cool and collected. No nerves, at least not in the back seat. 

Papa Bear can barely drive straight, his hands are numb and cold. Nervous, anxious, excited and fearful. 

I want this to go well for her. I want her to feel that success after the work and anticipation.

This is her first performance where she has lines and sings solo. 

We arrive and head backstage. She goes potty, always important before putting on the costume, and gets into her Princess dress. 

Ariel. My daughter will be playing Ariel. 

I give her a kiss on the forehead and remind her to focus and be loud. She looks me dead in the eye and says "Daddy, audience!" and points to the front of the house. 

Time to let the little bird fly. 

I take my seat and get the camera ready, hoping to keep my hands steady. 

The shows begins. 

The next 45 minutes are a blur, but I remember several important things:

• She was fully engaged. 

• She remembered and spoke all of her lines on cue. 

• She LOVED every moment. 

• I may have cried during her song. 
• She did amazing!

She absolutely lit up the stage and was the focus of every eye. Sometimes because she was smiling at the audience and other times because she was simply adorable and spunky. 

I couldn't be prouder. More importantly, though, is that she was proud of herself. A feeling so rare, so vital that I can't wait to see her shine again.

Awareness...

We use that word all the time, for so many reasons, it has been diluted and misconstrued. 

So, April is Autism Awareness Month. But, what does that mean?

More importantly, what do we hope to gain with all of this awareness?

For me, awareness is about opening your eyes and your mind to the complexity of something, rather than believing your initial reaction or societal stereotypes.

In many cases, this means allowing yourself to be wrong, accepting new information and letting go of your own preconceptions.

Now, what do we hope to gain from all of this awareness?

I think that's a very personal question. Not personal in the sense of intrusion, but personal in the sense that each person has their own answer.

For me, I hope that people take the time to understand the issues, rather than just listen to the news.

I hope they find beauty in the many autistic people out there, rather than simply focusing on a cure.

I hope the efforts and services double/triple/quadruple due to the knowledge gained by becoming aware of the hourly challenges faced by autistic households.

I hope businesses open their doors to autistic adults and find more jobs for them.

I hope schools receive more training and our teachers additional support.

I hope my daughter will be accepted wherever she goes...as an individual, as a contributor, as much more than special needs.

I hope her future is just as bright as any other child's.

Awareness...such a powerful thing.

Dadvice - Theme Parks...

I just got off the phone with Legoland. I spent 40 minutes on hold and was finally connected to a nice lady from purchasing. I asked about scooter availability and guest assistance for autistic children.

She put me on hold several times as she asked around her department for advice. Honestly, she was very helpful and tried her best to get me the information.

Her supervisor instructed her to try to sell me their VIP package as it would get me to the front of the lines. I could tell by her change in tone and vocal patterns that her supervisor was listening in on the call now. 

I asked her if there were any guest assistance passes for children with special needs and, after a beat, she said "no, I'm sorry there aren't, but the VIP pass will do the same thing."

I smiled, breathed, and asked to be connected to Guest Services.

I could tell from the relief in her voice that she didn't want to sell me the VIP passes and was happy I asked to be transferred. She also said that it would be best if I called their extension directly as there might be a delay in transfer (ostensibly removing her supervisor from the connection).

I called the Guest Services line and someone picked up right away, no hold time. They informed me that scooter availability is limited and that they DO have guest assistance passes for special needs children.

Another small smile.

The bureaucracy involved in theme parks can often deter parents from pushing too far. Or they can cause you to lose your cool and explode, which usually doesn't lend itself to people wanting to help you.

The lady in purchasing desperately wanted to help me, but was held down by the money making machine. If I had been loud, abrasive or lost my temper, she might not have helped me the way she did. I probably wouldn't have been able to pick up on the subtleties and nuance of her tone and vocal style.

In short, I got what I wanted because I remained calm and kept digging.

Sometimes, the bureaucracy wins. This time, a quiet lady in purchasing beat down the corporate monster with little more than shift in her voice.

Thank you, Tracey from Legoland, for being an advocate in your own way. I am truly grateful.

Autism awareness can be as simple as understanding a need and finding ways to help...even when everything and everyone is fighting against you.

D Day...

"Autism", the Dr. says. 

There are flowers on the walls in his office. Blue, red and pink flowers. The Redhead is looking at the pink flowers...so typical for a 15 month old girl...

The Dr. said it again. "Your daughter has Autism." 

I stare at my daughter's face for a while, not really seeing her or anything else in the room. 

I knew. Of course she is. I knew this...I knew. 

But...um...what?

Autistic? That's just a news story, right? Hype, propaganda, a juicy lead to sell advertising. 

My daughter, my beautiful daughter, can't be autistic. She's, I don't know, she's...MY DAUGHTER. 

Mama Bear is talking to the Dr. and I am nodding in time with their conversation. 

The Redhead laughs at nothing and starts babbling. Typical kids babble at this age, right?

I have so much to teach her, so much to do with her. 

How do I protect her from this?

It's almost time to go. I can feel the conversation winding down, the tone final. 

The Redhead reaches out and grabs my pinky. Her hands are still so little, so fragile.

My heart races as I kiss the top of her head, tears held back by sheer willpower. She's just a little girl. 

She doesn't deserve this. 

I pick her up and give her a squeeze, which always seems to relax her. Just a princess being held by her Daddy...must be that. 

I lean my head against hers and she presses hers against mine. I whisper "c'mon, Punkin, time to go". She puts her arms around me. 

I love her hugs. Open, honest. She shows love so simply. 

"I love you, baby. No matter what. Always know that." 

I carry her to the reception counter as Mama Bear signs the papers. I see the auburn in Mama's hair, a highlight mirroring her daughter's bright red. 

That's right, Papa, she's still just your baby girl. She laughs when you play airplane and giggles at your silly faces. 

She's the same. The words didn't change her. 

The words changed you. 

I let out a short laugh. I should know better. It's just words, just a label. It doesn't change anything, not if I don't let it. 

I kiss my daughter's cheek and smile, my heaviness lifted. Mama Bear finishes up and looks at me seriously, worried at my response. She smiles and kisses the Redhead's other cheek. 

Just like that. We were on the same page and in this together. 

Over 6 years have passed since that day. My daughter still seems to know me before I know myself, my wife still worries. 

The word "Autism" no longer scares me. I no longer associate it with loss, grief or fear. 

Instead, I think of amazing children and adults who's minds might be different than mine, but their beauty is undeniable.