Tuesday, October 29, 2013

A Horse With No Name

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.


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

    Ain't that the friggen truth?

  2. I tend to do this as well with my other children. Having 5 is a handful nut you factor in 1 that requires 24 hour care and attention and 5 seems to feel like 50! I have had to come to the harsh reality(thanks to my 16 year old) that I have more than 1 daughter, I also have 4 sons , wonderful sons who need me just as much if not a little more at times than Shaniya. You see she is always safe because she is always with me but they on the other hand are out in the world and having to face things that all teens(I have 3 teenagers) and 4th graders face. And for a while I think I was making them feel like they were facing it alone.