Not Today

Something is wrong. I can see it; I can feel it in my bones. Lil D is off, and as I go back through things in my head and track the data sheets that I (and his school) maintain, I see an alarming rise in incontinence – the fancy word for pee accidents. Lots and lots of pee accidents.

 I just threw out his old mattress, knowing it was beyond cleaning at this point, and got him a new one. And that new one is encased in an allergen-mattress cover with a vinyl cover on top of that, plus double sheets. The washing machine is running nonstop to keep him stocked in clean pants and underwear, and I’ve had to make an emergency trip to his school to bring in more clothes because he had accidents in every extra pair of pants I had stocked for him there.

I am washing his heavy weighted blanket. Every. Single. Day. He is taking showers in the morning because he is waking up urine-covered despite my best efforts — something I don’t like to do because the morning routine is so hectic already.

And then there’s the OCD (obsessive-compulsive disorder) behavior on top of all of that. The past several months, throughout the winter, Lil D was all about wearing hats, which were replaced by hoodies when the hats caused him rashes on his cheeks. We wondered, once spring came, how he would tolerate going hoodie-less. Well, that transition went fairly smoothly, with baseball caps acting as a buffer.

But the full sleeves obsession – that has proved really problematic. Not only is Lil D stuffing things up his sleeves (he’s becoming a bit of a kleptomaniac when we are out, and we have to check his sleeves before we leave any store), but if he wears short sleeves, he immediately draws his arms inside his shirt. We’re trying to overcome this OCD behavior by providing him with old-fashioned Richard Simmons-esque sweatbands to wear, but he’s struggling.

This is the boy who, last fall and summer, was obsessed with being in the shower. It was THE sensory thing for him to sit in the shower and let the water beat down on him. He’d ask to shower four times a day. Now, the moment he gets naked, he grabs whatever he can find and stuffs it under his armpits. He can’t get his clothes on fast enough. No “showa” requests going on at all. Wearing shorts is fine. Wearing short sleeves?You’re welcoming trouble.

I am tired. I am. I’ll admit it. I am tired of trying to figure this all out. I know there is an answer. The last few days I’ve spent consulting with my ASD (autism spectrum disorder) Mom expert friends, our doctors and his teachers at school in trying to figure out the urine accidents and uptick in OCD behaviors. I think I know what it is. I hope I do, and we’re addressing the problem now.

There are days of strength and gratitude and happiness. There are days of utter despair, and there are the days in between – some good, some not so good and all a little too tiring. There are days my faith is strong, there are days it is on autopilot, and there are days I struggle to get to the prayer mat.

In the midst of this, I read two status updates/questions in two different Facebook autism groups I belong to. In one, a mother asked what she was supposed to do: Her 10-year-old daughter, nonverbal with severe autism who is still in pull-ups (not toilet-trained) just started her period. What do you do? She cannot indicate if she has cramps. How do you teach her to wear a pad? How is this all going to work?

Another mother posted this:

“A couple of nights ago I had a funny feeling I should be checking on Mary*. It was 1am and she had not made a noise. She barely sleeps and at that time she is normally tearing her room up. As I opened the door I noticed that she had piled clothes and bedding up against her gate making it hard to open, I also noticed things from the top shelf of her closet on the floor, oh and…. No Mary. Not under the bed, not behind the curtains… Than [sic] I heard a giggle, she was on the top shelf of the closet, she had emptied the tallboy and used it as a ladder. So I woke my husband and we cleared her room, leaving just a bed. Didn’t get back to bed till around 3am. The next night Mary got out of her room at night and trashed the house, we woke up to find that she had emptied the pantry lining all the things up and opened up several bags of food and just plain littering. I discovered she had moved her bed up against the gate and climbed out, the gate we had installed a few months ago for her own safety as she has a habit of absconding. So while normal people slept my husband and I were up dismantling a bed. We left her with just a mattress. Tonight she got out her room again, how? Surely this girl has no furniture left! Well she pushed her mattress up against the gate, rolled up her blankets and you got yourself a makeshift step.”

Mary has a history of escaping, which is why her parents try everything in their power to make sure she is safe, especially at night.

These are the harsh realities of autism that is difficult, exhausting and nonstop. Autism is a spectrum, and this is our kind of autism. Someone’s daughter, nonverbal, still in pull-ups, who enters puberty and gets her period. Someone else’s daughter with a history of bolting and sleep issues, who keeps figuring out ways to escape her room at night. What are we, as parents, supposed to do?

My son, nearly 13-years-old, pretty much nonverbal, is having multiple urine accidents and amplified OCD behaviors the past two weeks. Not hitting himself too much these days, thank Allah, but banging his head on the floor, wall, or any hard object when he has a meltdown. He has a nice knot on the upper part of his forehead. Is he in pain? Does it hurt when he bangs his head? How many head bangs has to happen before I worry about a concussion?

In all the ups and downs, the triumphs and setbacks we’ve had with Lil D, these past few weeks aren’t the worst. By far, they aren’t the worst. So I should be grateful, right? Trust in His will, right? Ask for His blessings and mercy, right?

Right.

But unfortunately, not today. It’s not in me. I’m on autopilot, struggling to make it to the prayer mat, going through the motions. Ya Rabb, You’ll forgive me, right?

* Name changed to protect the child.