World Autism Day

Today is World Autism Day.

What's it like raising a child with a form of autism? Well, I go from completely annoyed, to complete frustration to denial to acceptance to feeling on top of things and then right back to being overwhelmed and helpless. And my son has a mild form of ASD. I cannot imagine what other families go through.

Here's the thing... autism changes the dynamics of a family. Older kids get sick and tired and frustrated when the autistic sibling is constantly whining, crying, temper tantruming and pulling you in a different direction every 10 minutes. Sometimes we lose our patience, sometimes we have a great day and I get the, "JP doesn't have autism mom! God!" And I reply with, "You're right, he has a form of autism called PDD-NOS. And there are times when he has great days and there are other times when he doesn't. You just gotta roll with it."

Roll with it.

Or slam head-first into it. Back up and repeat.

But eventually, you're just gonna have to roll.

Autism is more than a cute puzzle-piece themed magnetic ribbon. Its more than the disorder du jour. There are days where I feel totally together. Appointments made, phone calls in check, good days at daycare and pre-school. Good nights with no wake ups. There are days when I want to crawl under my blankets and close my eyes and pretend none of it is real. There are days I doubt my decisions thus far, when everything seems stacked up against my family.

And then there are those hazel eyes, fringed with baby doll lashes. That dimple and cherub mouth. That laugh. That smile. And that hug. God, I could look at that boy's face all day long.

I don't know why, I don't know how. I just know that I have this little boy who struggles a whole lot with things that the rest of the world takes for granted. And for some reason, he was given to me. Gifted to me.

I was also given/blessed with some amazing caretakers, help, family, and team of professionals. So, today... I want to say thank you to each of you.

Mom, dad, brothers and sisters. Aaron. Michelle. Desiree. Kim G. Autumn. Danielle. Betsy Brooks. MCPAP. Miss Sue at West Street School and every other teacher and aide in that building. StonyBrook. Rhonda.

All of these amazing people care for or have cared for JP. They have loved him and supported him. Autism doesn't just affect the nucleus of family. It changes the dynamic of every place you go. From restaurants to malls to classrooms to any waiting room in America.

The next time you see a child acting out or screaming in public... think of us. It happens. And it isn't because he's spoiled or I'm a bad mom. I've had more than my share of opinions and dirty looks. Judging moms (or who you assume is mom... right Michelle?) when they're struggling lifts no one up. It demeans and degrades the exact person who least needs it.

Just remember: autistic kids don't wear labels on their shirts. We do what we can with we what we know and with what we have. And there are moments when we have precious little left.

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