Home Sweet Home

Home Sweet Home

MÖTLEY CRÜE

FROM THE ALBUM "GREATEST HITS"

BUY

My family and I went to the Walk for Autism Speaks 2014 event this morning at the historic Rose Bowl in Pasadena, California. We've gone the last 4 years. We've never had a team, but show our support for our community. I've even had the pleasure of meeting some of you there in years past.

This year was a little different. We brought Jack's in-home ABA therapist for his last session. We will miss her (as well as his other therapists... which I wrote about here). It was nice. We took advantage of the resource fair, said hello to some old friends, said good-bye to our therapist, and ate some crappy food from the vendors.

(Jack says good-bye to his last therapist)

***

For a few minutes, Jade and I split away from Jack, Julie, and Jennifer. I took her to the bounce house before it was too crowded.

Nearby, trying to stay out of the spotlight, was a woman with two boys. They were in a double stroller and were too large to still be in a stroller. I assume they were twins and were 8 or 9. They were both melting down. One crying and one thrashing.

Mom was obviously crying behind her over-sized sunglasses.

***

I spend so much time writing about our children fitting in and belonging among their peers. The resource fair at an Autism Speaks walk is a great place for our children to be who they are. Nobody looks twice at the child wearing nothing but a swimsuit, or the child talking to himself, or the eight children tracing the parking lot fence with their fingers.

It's home. It's safe. It's them.

For us, too.

***

I stand in-line for the bounce house and watch a grown woman cry. I take my sunglasses from my hat and put them on, because I don't want her to see me tearing up for her. Her boys are nowhere near the only children here having a "tough time". I feel empty and helpless for her. And I turn my head to not stare.

One by one, women walked by... other mothers, therapists, young girls perhaps on the spectrum themselves... None of them stop and stare.

The first, a woman in her 50s, places a soft hand on her shoulder and moves on. A young therapist gives the mom a hug. A child exchanges a smile with her.

Finally a man around my age walks by her. He places a hand on her shoulder and leans in close and says something to her. She gives a half-hearted smile and wipes a tear from behind those sunglasses. He touches her shoulder once again and walks away.

My mind races with all the things he could have said. He could have said something like "You're among friends", or "You're safe", or "We've all been there". And I smiled.

Jade finally got in to the bounce house. And the Mom calmed her boys enough to move on. As I watched her walk away I thought about my community. I thought about my peers, not my son's. I thought about how nice it was that so many people touched this Mom... with respect, not condescension. I was proud. I was proud of my community and my family. I thought of how often I read blogs about a kind word that was said, or a mean word that was said, or a dismissive glance given, or a disdainful scowl, or an empathetic smile.

And I realized the man that spoke to her was only a few feet away from me. He was watching his son in another bounce house.

"Excuse me. What did you say to that Mom?"
A wry smile emerged from his rugged face.
"You belong"

Fuck yeah you do.

Home Sweet Home.

Thank You

Thank You

DIDO

FROM THE ALBUM "NO ANGEL"

BUY

This morning I find myself overcome with a feeling of sadness, positivity, and nostalgia... all at once. 

Jack was diagnosed in November of 2009. In October of 2010, we started in home ABA behavior therapy. On Saturday, 3 1/2 years later, that therapy will end.

I want to write about two things in this blog today. First, what was the benefit of behavior therapy, and why we agree that it is time to move on to the next stage. Second, I want to thank the therapists that have been in our home, and part of our family, through the years.

My wife (Julie) has written before about how she felt we were "destined" to have Jack. You can read her words here. To paraphrase what she wrote so eloquently, there were lots of things in our lives that set us up to raise Jack. My father is a pediatric physiatrist. My sister is an OT, and her college room mate was an ABA therapist... So we were well prepped on what to expect from ABA therapy. I don't want to go into what ABA therapy entails here... it's a lot.

But I do want to tell all of you what we got out of it, and more importantly, why we are willing to let it go. Put simply (VERY simply) ABA therapy is directing instead of following. Stay in front of your kid, so you don't get behind him. "We're walking close to the grocery cart" rather than "Don't touch the peanut butter". To do it correctly takes a lot of time, a lot of patience, a lot of heartache, and a lot of "training"... TO THE PARENT/CAREGIVER.

Jack is by no means "cured" of his autism, or maladaptive behaviors, but Julie and I are as educated and trained as we can be to guide him through them. To understand them. To truly empathize with him. And, quite possibly, "correct" them.

Autism Spectrum Therapies gave us those tools. They aren't paying me to say that. I want to endorse this company (which is nationwide, btw). Their mission statement is clear. Their therapists are educated and fantastic. Their supervisors are glowing.

So thank you to AST for servicing us. It is because of your company that Julie and I truly feel we have the tools to move forward on our own.

Thank you.

***

One of the most wonderful (and humbling) things about raising a child with special needs is the people that will come in to your lives (and homes) for your children. It is amazing that there is someone out there that loves your child so much to make a difference.

I want to thank three. Actually, I want to thank four, but our current therapist is really Julie's (as they do sessions on the weekends now) and I'll leave that to her.

(ed. note - I am not using their real names, but the pseudonyms are loosely disguised as I want these ladies to read this)

Terry  - Terry came into our home as our first "full-time" therapist. You have to remember that I (the father) was home for most of the sessions. The father is the primary caregiver for ABA sessions around 8% of the time, so we were already a little unique. Terry taught me and Jack the ABCs of ABA. She was bright, had a wonderful disposition, encouraging, corrective when necessary, and thorough. Most importantly, she truly loved Jack. So many sessions were spent with Jack on her lap, showing her how "Handy Manny" wanted to set up his town (pretend play). Terry was soft and loving... which is exactly what we all needed at that point of therapy. We will never forget you. I remember there was a brief phase where Jack's reward was making "sound bites" on an application on the iPhone. He would record burps and farts and buzzer sounds. And one day he recorded this:

Terry: Jack.
Jack: What.
Terry: I love you.
Jack: I know.

And on the hardest days... I still play that sound bite today.

Thank you for loving my boy so much.

Karlie - Karlie came after Terry. She was brilliant, young, and enthusiastic. She found Jack fascinating and funny. She loved him. She came at a time where we were encouraged to "go out" in the community, and we did. We went to the grocery store and Target and the park. Karlie was the most interested in what made Jack "tick" of anyone. She was equally fascinated with him as he was with her. And she got promoted to supervisor deservedly because of this thirst for knowledge. Karlie also handled me well. When we had a break she would talk to me about the Dodgers. She was curious about Julie's job. She was just "going places".

Karlie, thank you for loving my boy so much.

Stacia - Stacia is the therapist we had for the longest period of time. She was the toughest and strictest. She had absolutely no problem telling ME I was wrong. She definitely taught ME the most of anyone. She was the best therapist I've ever met. We fought to get her. We fought to keep her. She was brilliant and never afraid to try new things.

Stacia was also with us at the toughest time. Stacia had to endure the "aggressive" year. Stacia got punched, kicked and bit right alongside me. Stacia stayed late to finish the "90 minute / 104 acts of aggression" meltdown with Julie... because she cared. We had her in some capacity for about 2 years. And despite her tough/rigid exterior, every once in a while, I would catch her saying simply "Jack, can I give you a hug?" because she was overwhelmed by Jack's charm.

What Stacia probably doesn't know (or at least adequately) is that she saved my life.

There were some tough times in that year. Stacia is the only therapist that has seen me cry. Stacia is the only therapist that has seen me throw my hands up in the air and say "fuck this"!

And she NEVER gave up on the boy.

And she NEVER gave up on me.

And I will NEVER forget that.

Stacia, thank you for loving my boy so much... But thank you for believing in him... and me... even more.

***

If you're new to this journey we call autism, I want you to take away from this article that you are going to meet some amazing people in your life. People that you would have never met had you not had a child with special needs.

People that will champion your children forever.

Let them.

Thank them.

Thank you, ladies. Julie, Jack and I love you.

We Belong

We Belong

PAT BENATAR

FROM THE ALBUM "ULTIMATE COLLECTION"

BUY

We took Jack to get a haircut last week. The haircut went well. Maturity/Age have made them not only bearable, but I dare say pleasant. In the prepping for the haircut, Jack opened his world to me. He let me see what he sees. He let me know what it was like to be him... and it was heartbreaking.

"Jack, we're getting your haircut today"
"I want you to shave my head, like Billy (a classmate)"
"Well, Jack, you're Irish. We don't do well with shaved heads. We get pretty bad sunburns."
"But Billy shaved his head"
"He's Hispanic. He can pull it off. You're not shaving your head, Jack"
"But Billy shaved his head"
"So what?"

"If I shave my head like Billy, maybe some of the other kids might think I am Billy... and they might accidentally sit with me at lunch."

***

When I was in high school, there was a kid named Matt in my class. He was the class president, prom king, and all that jazz. He was the nicest human being I had ever met. Humble. Kind. Handsome.

I went to his house one afternoon to attend a bible study... because I wanted to be him so badly.

***

Jack opened the door for a teachable moment. I was so proud of him using third person perspective that I almost blew it. I almost missed it.

I've assumed this entire year that Jack has an inability to take another's perspective. He doesn't "get" when he is being made fun of. He doesn't "play" social games, or participate in student hierarchies. He doesn't mind if another child excludes him for being poor, white, fat, short, dumb, nerdy,  or whatever. I've always placed the power of inclusion on him. Jack will find kids interested in what he is interested in... because he's so "self-directed"... he's so "autistic".

***

When I was 11 or 12, my parents bought me a bike for Christmas. It was a giant, yellow, beach cruiser. I cried because it was so "uncool".

As an adult I talked to my parents about "the worst Christmas gift ever". They said they purposefully chose that bike because I was such an independent soul. I was so different... and reveled in that independence... reveled in that artistry... reveled in that self-confidence.

And I told them how hard I had tried to simply fit in.

It wasn't until college that I found self-confidence in my independent spirit.

I just wanted to fit in... I just wanted to belong.

***

So, Jack, here I am publicly apologizing for selling you short.

Here is your new lesson.
Here is your teachable moment.

You are growing, my boy. You are maturing. I take responsibility for tackling what is going to be a very "complex" or "adult" issue.

Jack, everyone feels alienated. I bet Billy and Matt even felt it.

It won't be until later in life that you accept your uniqueness. That comes with experience and maturity. Unfortunately, that road also comes with a lot of solitude and longing.

Changing your haircut, or getting a new bike, will not help you "fit in". It will not change who you are.

I had plenty of friends that accepted me for who I was.

And so do you. I see you talk to them. I see them listen to you. I see them have lightsaber battles and play minecraft with you. I see them include you.

So, Jack you may never "fit in"... But, know this, you will always belong.

Always.

Jack and his "friends" at the La Brea Tar Pits - February, 2014