The Spring Break that Wasn’t a Break

Ali Family Autism Truths #3, April 3, 2016

In a home full of kids (including my own and my visiting nieces), D and I may be the only ones who are happy Spring Break is over, and he (and everyone else) is headed back to school.

Because when is a break really a break? A break from what? Autism? No.

Like many on the spectrum, D has never been a fan of long breaks from school. A week is about his max tolerance, and even that can get dicey. Other friends of mine have autistic children who crave breaks from school. As the old adage goes – no two autistic individuals are alike. Or, if you’ve met one person with autism, you’ve met one person with autism.

Thankfully, as D has gotten older and well ensconced in the teenage years, some of his habits and obsessive need for routine has softened somewhat. He is no longer the kid who gets up at the crack of dawn, no matter how little sleep he got the night before. Some mornings he stays asleep or drowsy and lazy in bed past 8 or 8:30 am. That’s huge.

He is no longer the kid who must have his food at a certain time of day or ALL HELL WILL BREAK LOOSE (Well, actually he still gets hangry, but it’s more manageable and flexible).

And, he is no longer the kid who loses it by day two of a break (winter, spring, Thanksgiving, etc.) because his routine of school, home, therapy/care giver time, dinner, lounge time, bedtime has been disrupted. I am so grateful for that, for the natural changes that have occurred as he has grown older.

In fact, when his grandmother remarks to me at times that D doesn’t do this anymore or D is doing that thing differently now, I gently remind her – He’s growing up. He will change. And not all of that is because of autism. That’s just a natural progression of growth and maturity.

But all that being said, we are done with this particular break. D.O.N.E.

D’s grandfather underwent bypass surgery earlier in the week, something that although wasn’t an emergency situation, caught us all by surprise and came about so quickly that we are all still catching our breaths. He is now home from the hospital, thank God, and in recovery mode.

But the road is slow and the care is all encompassing for the family, as we knew it would be. And, as much as I’ve tried to keep things stable for D, it’s been anything but, with family converging, lots of kids about, adults in and out of the house, care givers on vacation and, well, no school. He has taken it all in stride as best possible, and I love him even more for it.

D’s especially close with his grandparents, and one of his favorite things to do is to chill in their bedroom, wrapping himself up in the covers of their bed. His grandmother will lie next to him and repeat verses of the Quran to him or sing old lorries (lullabies), repeating oft-heard phrases of love and endearment to him. He just soaks it up.

Now my father-in-law is spending the majority of his time in his bedroom, in bed or in a chair next to the bed. He is fragile and healing, and the last thing he needs is a bounding D jumping up on the bed for a cuddle session. D has come by a few times to the room to assess the situation. He tried to get in bed once or twice, but promptly listened when we explained that he cannot loat-poat (roll around) in bed with his grandfather.

Today, after popping into their bedroom several times, D watched as his grandfather got up slowly and went to the bathroom. As soon as the bathroom door closed, he saw his chance and leapt onto the bed with a giggle and a smirk. We couldn’t help but laugh as my nephew said, come on D, let’s get off the bed. We’ll go wrestle on the couch.

As time passes, his grandfather will improve and get stronger and inshallah (God willing) return to his active self. This break from his health will end. But the truth is, D will never catch a break. And, maybe that’s the wrong way to look at his autism. I mean, it’s part and parcel of who he is, and as many autistic individuals have said, to despise or dislike a loved one’s autism is to despise or dislike the person themselves.

But its way more complicated than that. At least it is for D and for us, I feel. For D, whose autism manifests in such profound and deep ways, coloring and touching every aspect of his being, his life. Would he want a break from it? Would he be offended if I were to offer him that choice (though I have no power to do so?)

I know what I think. But I’ll keep that thought private unto myself.