Cookies, blankies & life

Austin is talking!

It all started one afternoon when he was motioning that he wanted a cookie. A cookie is a treat, so I decided to push him a bit. I told him to say “cookie”, not really expecting to hear anything in return.

A second later I heard “ie ie”.

I freaked out. I screamed and jumped up and down and told Austin how proud I was of him. It was one of the highest points of the past two years. It was watery eyes, and laughter & bursting with pride.

From there things progressed pretty quickly. Within two days “ie ie” turned into “tookie” and he began repeating just about anything we asked him to. Right now he is still mostly just repeating, but he has also initiated using certain words a few times. He has decided to call his favorite monkey blankets “kiki” (his way of saying blankies). One day they were in the wash and he walked to the garage door crying and saying “kiki”.

We’re full swing into summer with two vacations and two weeks of summer school under our belts. The trips actually went really well. I could not have asked for more from Austin; he exceeded my expectations in every way. That’s not to say things were easy, however. Autism and easy do not go together.

Life right now is pretty exhausting. I feel like a lifeguard on duty 24/7. I have no choice but to be diligent. Austin moves very quickly, and will take off suddenly, even if he was contentedly playing a second before. He is into everything right now, so even if his obsessions won’t necessarily be a danger to him, it can be a big expense for us (like the time he put my makeup compact down the toilet…)

Just today, during a pretty typical afternoon at home, I lost track of Austin for a second. My heart was pounding and I was panicking because I couldn’t find him. Thankfully he was curled up on the couch with his blankets and perfectly fine. Other times, though, I’ve found him in the garage, and even worse, once found him in our car in the garage. Now that it’s summer and HOT these are especially not places he can be.

Being on vacation and out of Austin’s typical environment meant even more worrying about keeping track of him. It’s mentally and physically draining, but I can’t let my guard down. I could never live with myself if something happened to him that could’ve been prevented.

Right now I think that we’re both struggling with the permanence of our situation. With our other kids, we know that everything is a phase, or a season and it will pass. There is no such guarantee with Austin. His fits can improve, yes. But there’s no certainty they will.

Maybe one day he won’t take off on us.

But he might.

Maybe one day I won’t have to watch his every move to keep him safe from himself.

But I might.

In the first year after Austin was diagnosed we came out guns blazing. We were ready to take on the monster called autism. We were going to do everything possible to help Austin “get over” the autism, and at the very least, we’d get him to be a super high functioning autistic. You know, basically normal with some quirks. We could handle that.

This year has been more about learning to accept that you don’t “fix” autism. There’s no magical thing we can do to make it go away.  This year has been about accepting and grieving.

Some days the grief is dull and I’m ok.  Other days it is sharp and painful. While sitting at a recent police academy graduation, I watched police father after  police father call their sons up to receive their diplomas. Sons following in their dad’s footsteps. Just like I imagined Austin might do one day. Of course I know Austin might not have chosen that anyway. But he might have! And it’s one of many dreams that are now lost. I cried that weekend like I don’t think I ever have since this all began. It hurt so much.  It will always hurt.

I’ve held off on updating for awhile. I’ve thought about it, but then I hesitate.  I hesitate to share so openly my thoughts and feelings. It doesn’t come easily to me.

In the end, the reasons I continue writing are pretty simple. First, it’s an outlet for me. It allows me to “unload” as well as to look back and see how much progress our little guy has made.

The other reason I keep writing is because maybe there is another mom struggling with the highs and lows that come with autism. Maybe there’s another mom crying behind her screen, battling loneliness, grief and anger like she’s never experienced before. Maybe knowing she’s not alone and that she’s not the only one feeling this way can help. If even just the littlest bit.


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