Wednesday, December 4, 2013

Why gifts are sometimes hard in the ASD world

Yesterday was tough.  It was a hard day in the Autism vs. Me world.  I shared it here, and I will share it here as well. 


Some days Autism really sucks. I have a love/hate relationship with it. Today, it was the latter. Today, it broke my heart and my daughter's.

My little girl isn't girly, and pink has been a four letter word in my house for quite a few years. Gone were the days when she wanted pink socks, a pink backpack and pink bows in her hair. Pink rain boots, pink sheets and pink notebooks. Pink tights, pink plates, and even pink undies. These days, nothing can be pink.   Absolutely nothing.

A few months ago my daughter asked if she could have a pink hoodie. Specifically, a pink camo hoodie. I was thrilled. I asked friends, family and even clients where I could find such a thing. I wanted to go to an actual store, to touch it and feel it. To make sure it not only fit, but that it was the right texture. That the tags wouldn't be too scratchy or the seams too tight, for the one of two sensory driven children of mine.

So I found a store that had this magical thing that she wanted. Wanted it so much she practically asked for one every day for months. I drove 56 miles one way to Cabela's. I walked around the giant camo clothing section a multitude of times to find it. I spent close to an hour searching. The little kid ones were too small, and the adult ones were too big. It was like Goldilocks and the 3 bears. I finally found a rack on the outskirts in the sea of clothing, an oasis of pink camo fleeces.

Lo and behold, there was one in her size. It was camo printed, and it was pink. Only one problem.

It had no hood.

Typically you'd think, it's not a big deal. Yeah, that's what I thought too. That was my mistake and I should know better.

I should know, because Autism doesn't know any better. It doesn't know that 9 out of 10 isn't good enough, or that even 99 out of 100 isn't good enough. A solid "A". It only knows that it is or it isn't. It's up or it's down, right or wrong, black or white. Period. End of story.

Autism doesn't know the excitement this mom knew was going to be in her daughter's eyes. It doesn't know the hour I drove each way just to get this special thing for her. It doesn't care.

It only knows inflexibility, rigidity and boundaries set in stone. It only knows that 9 out of 10 isn't good enough, and that expectations must be met. They must be met, or everything falls apart.

Do you know what happens when a pb&j is expected to be cut in squares, not triangles? Or if a piece of paper is folded that was not supposed to be? A blue marker instead of purple? When Mom and Dad have had a long day and bed time is at 8:59 pm, not 9 pm? When you run out of goldfish crackers and get pretzels in your lunch instead?

When you get a pink camo fleece jacket without a hood?

You get tears and stomping feet. You get screams and a temper tantrum. You get heartache and vicious disappointment. It doesn't matter that it's only about a hoodie and that your 9 years old. The world ends and the sky is falling. Autism doesn't care.

But I do.

I say love/hate because I cannot have one without the other. I can't have my children without Autism. I can't. It is part of who they are and how they were fashioned. How they were built and how their brains were wired.

I sat here tonight to type out my feelings on this subject with disappointment and sorrow weighing heavily in my heart. I had no room for anything else, and it consumed me.

But I am not going to let Autism win today. I am going to fight back, because I care. I too want that 10 out of 10, that 100%, an A+. Sometimes it does, and sometimes it doesn't. But my sky isn't falling and my world is not ending.

And tomorrow I will go in search of a pink camo fleece with a hood. Next time I will cut squares in the pb&j first, or make a paper airplane out of that folded paper. I will have a blue marker in one hand and a purple one in the other. And I will buy a pallet of goldfish crackers, or maybe 2 pallets...

Just in case.
So that was yesterday, and after a flood of Facebook support and suggestions from friends, I am on the hunt again.  I found them online at Kohl's and Wal-mart, and hopefully they will have them in the store as well.

No comments:

Post a Comment