A Horse With No Name

 

A Horse With No Name

AMERICA

FROM THE ALBUM "HERE & NOW"

BUY

A friend once said to me "Not everything is about autism, Jaye"

I apologized and started talking about a movie or some music or an old friend or something... the entire time thinking in my head: "It is for me"

***

Do you ever feel that your entire life is consumed by your child's diagnosis? How does that present to your friends? How does that present to your family? How does that present to your spouse? How does that present to the professionals you deal with? Are they empathetic? Do they even notice? Do they avoid you?

How does that present to your other children?

***

This past weekend, one of our neighbors was having a Halloween party. Julie had taken Jack and Jack's behavior therapist to Descanso Gardens for the session and I was tasked with getting Jade ready for the party which we would all go to upon their return. Win-Win here. I had three hours to complete a 10 minute task, a morning of college football in front of me, and I didn't have to go to some place with "gardens" in the title!

Even though it's not necessary with her, I started prepping Jade for the party. "Jade, we're going to a Halloween party in three hours. You can put on your princess outfit". Old habits die hard when it comes to prepping your kids.

But Jade started to say "I don't want to go to the party. I don't like Halloween parties. I have stage fright". As adorable as it was, Jade is a bit of a diva. I think she meant to say she was scared of the other costumes, cause this little girl has anything but stage fright.

Odd. My baby girl LOVES parties... especially when she gets to dress up for them.

"Okay. Three hours Jade."

And I turned my attention back to the football game on TV between two teams I couldn't care less about. It only took a minute of silence before I heard her.

"Wanna' play ponies with me?"

The constant din in our house. I turned my head and looked into the saddest big blue eyes. I saw her holding Twilight Sparkle (her favorite) close to her chest and extending Pinkie Pie (who I told her in a dismissive fit was my favorite at some point in time) to me.

And it all came together. She wasn't scared of the party.

She just really wanted me.

The wave of guilt washed over me as I said "sure" and took Pinkie Pie to visit the Crystal Empire and turned the TV off (I could read later that University of Miami came back to win) and Pinkie Pie and I were directed for the next hour or so (I told you she was a diva) through some adventures in Canterlot.

I'll be honest with y'all. It wasn't fun. I'm not interested in My Little Pony.

But, boy did I feel connected to my baby girl. We had one hour together that nobody was directing Jack. Nobody was watching TV. Nobody was working. Nobody was writing a blog. Nobody was dressing for a party. Nobody was making lunch.

Just being there.

***

I am not a perfect parent. I know I spend too much time on Jack and Jade gets hosed for attention. We try to remember this and do things with just Jade.

Why do I want to tell you all this?

Because, as I started the article, maybe I do talk too much about autism. I'm a blogger. I'm a blogger that has opened up my family (and myself) to public scrutiny and silent judgment. A blogger that is trying to share experience to enlighten, educate, entertain or empower.

A blogger who wants you to know that I am indeed flawed. I judge. I bitch. I overreact. Your situation may be better than mine. It may be worse...

But it is yours, and mine is mine.

Everyone that has read this far I would like to give you something to take away from this. To everyone out there, parents and non-parents, friends, families, and strangers...

Never let circumstances encumber you so much so that you stop trying to make yourself a better person.

Isn't that what life is, after all?

Because if I hadn't... If I had just ignored my daughter one more time... If I had just said "later"...

I would miss this:

And Twilight Sparkle might have to find a new Shining Armor.

Thank you, as always, for reading.

Who You Are

 

Who You Are

JESSIE J

FROM THE ALBUM "WHO YOU ARE"

BUY

I start this blog with an apology... I go back and forth between "person first" usage of "has autism v. is autistic". It is a stylistic choice I am making for emphasis. If this bothers you, I urge you to read to the end... where I tell my son who he is today, his 7th birthday.

Jack Capell was born on October 2, 2006. Your mom went into labor on our 1st anniversary (pretty cool, eh?).

Let me tell you about how you got your name...

The first thing you need to know about your name is that we did not know if you were a boy or a girl, so we had planned/picked names for either one.

When you were still in utero, Daddy worked an overnight job at a hotel, so he wasn't home at night most evenings.

One morning, Daddy came home before mommy had left for work and she told him "I had a dream about the baby last night"

Mommy told me she had a dream where she met a little boy who introduced himself as her son. He said his name was Jack and that his daddy had named him. Daddy laughed and said "Were you watching '24' or 'Lost'  before you went to bed" (they both had lead characters named Jack).

Mommy and Daddy both really liked the name. We didn't want something obnoxiously 'different' for you. Jack has been a classic since the 14th century, so we both liked it.

The second you were born, the doctor flipped you over to me to show me your "fruit cup" and I said "It's a boy... right?"... And he handed you to your mama and she said "I knew it. Hi, Jack"

When you were a little boy, and even today, we can't even imagine that you might have had a different name... You were always Jack. I remember we used to call you "The Senator" because we thought "Jack Capell (Ka-Pell)" had that great double K digraph and sounded like power. You were destined to change the world. You were going to take those brilliant blue eyes I gave you and make a difference.

When you turned 3, you got a different name... Autistic.

It was given to you by the State of California, the Glendale Unified School District, and the American Medical Association.

I never liked the new name... It didn't sound as powerful.

***

So, today, my boy, you turn 7. Very soon, you and I are going to have a talk about why people call you autistic. I'm going to use words like "disability", and "NT", and "Sensory Processing". I'm going to tell you that you have autism... and you might get a few new names.

I tell you here, Jack, that none of those things are your names. You are not disabled, less, or even different... you are unique.

You are the powerhouse, endearing, beautiful soul that your mama named you.

Whenever someone asks you "what's wrong with you", or "what do you have", or "who are you"?...

You take those beautiful blue eyes and stare right at them and proudly declare...

"I am Jack Capell"

You're god damned right you are.

A Case of You

 

A Case Of You

JONI MITCHELL

FROM THE ALBUM "BLUE"

BUY

I am a stay-at-home Dad raising a child with high functioning Autism. I am many other things, but that statement has come to define me. 

Those were the first words I ever wrote on this blog.

Today, however, I want to talk about one of those "many other things" I am. Eight years ago today, I married the coolest chick on the planet.

7 years ago today, the coolest chick on the planet went into labor with our boy (Happy Anniversary!), an event that would change our roles as husband and wife, change our roles as mom and dad, and change our roles as lovers.

We don't have an incredibly complicated or dramatic birthing story... there were some minor bumps, but in the end, it all went well... something odd I remember, perhaps trivial, was that it was raining the day both of my children were born... Odd because it only rains 20-25 days a year in Southern California. As if the Heavens were giving the Earth one last good cleansing before the arrival of my children... decent of Mother Earth.

I digress... Three years later (around his birthday) Jack was in the process of being diagnosed with a developmental delay/disorder... autism. And our roles changed again.

6 months after that, our beautiful Jade was born... and our roles changed again. That's when we decided that I was going to quit my job to be a stay-at-home dad. Jack had some sort of therapy or schooling almost every single day, and it was evident that one of us needed to be there for that.

My wife had the (much better) job that could support the family. My wife is an attorney, a civil litigator, which (according to the movie Clueless) is the scariest kind of attorney. What did that mean to us? Lots and lots of long hours. Or as she sees it, lots and lots of long hours away from her children and husband. Over the years there have been many missed weekends and separate vacations and missed milestones, all in the name of providing for the family. We've talked about it a lot over the years. The guilt she faces. The guilt she feels. The double-standard of society saying "how can you be away from your children", yet if the man was working many hours how he'd be seen as a Hero and great provider. I'll have her write a blog about how she feels about that, and how she handles it, and, most importantly, triumphs in the face of it, because it's not really my story to tell.

So, where am I going with all this?

Today is our anniversary... 8 years. And I wanted to write something to tell her how much she means to me, to all of us. I wanted to write something about how our roles have changed. Something about how we're doing it different than the average family, but it still gets done.

So, since I know she's going to read this, this is what I want to say to my wife... to my bride, to my friend, to my son's champion, to my daughter's heart and soul, to my legal counsel, to my harshest critic, and to the one that holds my pure admiration.

Baby Love, life is a series of choices; some good some bad. Some made by us, some made by others. Our family is the result of a series of good choices, with hopefully many more to come.

I think back to our wedding day... it was beautiful. Everything went perfect. We had so many friends and family there to celebrate our love. I couldn't ask for anything more.

A perfect day, eight years ago. We were so in love and young...

Yet here I am eight years later even more in love with you.

"You are in my blood like holy wine. You taste so bitter, but you're so sweet. I could drink a case of you, and still be on my feet. I would still be on my feet."

Happy Anniversary, Baby Love.