Mommy Monday: REAL Life on the Spectrum

For someone, who does not live with or love someone on the autistic spectrum, it is nearly impossible to imagine how much it can and does impact your daily life. Today, I want to take you inside our world. Let you see how high-functioning autism affects PanKwake.

Let’s start with sleep. Those on the autistic spectrum do not operate on the normal circadian rhythm, that’s a fancy way of saying their body clocks are off the rest of us. As adults, many live happily by staying up all night and sleeping all day. Unfortunately, children are rarely given a choice in their bedtimes. But even then, they may have trouble falling to sleep and/or staying asleep.

Because she is homeschooled, I do allow PanKwake to control her body clock. And trust me, it can go all over the place…ALL OVER. Right now she is falling asleep around 4 or 5 in the afternoon and waking up around 2 or 3 in the morning. Which means I have to get up and check on her, make her something to eat, set up her computer and a half dozen other things when I should be sleeping.

My favorite is when she goes to sleep somewhere between 1 and 3 in the morning and wakes up around noon. That gives me time to write in the morning and clean/cook, but still allows us plenty of daylight to do fun stuff. If I could choose one set bedtime that would be it…but it does not work like that with her. If most of us are on regular 24 hour days, hers seems to be 26 or so, meaning that over the space of a few weeks her sleep moves completely around our 24 day cycle.

It that is not bad enough, let’s talk food. She is soooooooooooooooooooo much better about that than she used to be. Now she will ask for and try new things. You know how that happened? YouTube challenges! She has even told me lately, “You know I like to try new things, Mommy.”

But it was not always this way. For most of her life, she had about three dozen PanKwake approved foods that she cycled through…binging on just ONE of them at a time. Mere-Mere pasta (mac-n-cheese to the rest of the world), baked potato with butter, cheese and sour cream (mashed up well), Campbell’s vegetable soup (but it had to either be blended or strained…not pieces of real vegetables in there). And my favorite…Philadelphia brand cream cheese…straight from the tub.

It made shopping a nightmare. Some things like the soup are easy enough to keep in stock in the cupboards because they are non-parishable. But loads of the others are. So it played out something like this…for two weeks she would eat NOTHING but Iceland’s frozen chocolate gateau (icing only!!!). And because you had to have it on hand when she wanted it, my fridge and freezer would be full of five or six of them. Then suddenly she was off them…and I was stuck with four or five that would not keep forever. Worse yet…it is midnight…all the stores are closed and suddenly she wants…Chicago homestyle pizzas, the mini-ones with pepperoni. London…no all night Wal-Mart, no car and she won’t leave the house. MELTDOWN time…for an hour.

And don’t give me bull-shit about she’ll eat what she is given or she’ll starve. You want to go to jail for murder for starving an autistic child? Because you will lose.

And clothes? No tags. No socks. No shoes unless she absolutely MUST and then only pink Crocs. Yes, in the winter too. Oh and no pants either. I have to sew her skirts that she can put on and off herself. No fuzzy coats…only the parachute style nylon material.

Baths…hair…teeth. FORGET IT! When she was little, she used water to self-soothe so baths were easy. But not for a couple of years now. She still loves the pool though. So these days, her carer is her on Tuesday, Thursday and Sunday so I make her take one then…because Regina don’t want to smell her.

Hair? Now in case you don’t realize, PanKwake is mixed race…so hair would always be an issue. But forget brushes…or combs…not in two years. I can sometimes get my fingers through it. But just to allow me to condition it is a MAJOR accomplishment. And teeth? Forget twice a day…once every other…if I am lucky.

Does it bother me when other people look at my child with her messy hair and homemade skirts and judge me as a bad mother? Not as bad as I know those things bother her. Are actually painful…for her.

And those are just the basics, folks. Visual memory that means she wants all her toys out so that she can see them…or she forgets them. So sensitive to sounds that we cannot even walk on the main streets for long and must take smaller ones even if it is out of our way. having to wear sunglasses in the winter and ear muffs in the summer to filter some of the worst of it.

So many many many more…and that is just one little girl on the autistic spectrum. Each person has their own sensitivities…is uniquely different. And to ignore or dismiss these sensitivities to force her into situations beyond her capacity…is cruel.

Does all of this make my life harder? Hell yeah! But not nearly as hard as hers is…and that is what I have to remember…and what I want others to understand about autism.

These children are not spoilt…they are not exaggerating…they are not making it up. The volume on their lives is turned to high…ALL OF THE TIME. Life…the world…is a physically painful place for them. But with a few accommodations, they have a hell of a lot to give back and to teach the rest of us. If we give them a REAL chance.