It’s Not Just About You

The only thing predictable about autism and Lil D in our house is that it and he are unpredictable. You can say that about life in general. It’s not a unique characteristic owned by autism or my child in particular. And yet, it is unique to us in its manifestation.

We met with Lil D’s speech and occupational therapists last week at school at my request to discuss some things we want to change/try with his assistive communication device (his iPad), as well as figuring out a plan to help deal with his latest round of sensory issues and the behaviors growing from that.

When the meeting was done, the OT and I were walking out to our cars together. I said to her, “I just don’t why he is having such sensory issues with his arms, why he needs to be covered, have arm squeezes and stuff things up his sleeves. We’ve never had an issue in the past transitioning from winter full-coverage clothing to the T-shirts and shorts of summer. But it’s insane this year.

“He’s turning 13, right? He’s growing up,” she said to me with a smile. “Things change. What wasn’t an issue in the past is now, and what used to be an issue may not be anymore.”

My knee-jerk reaction was to get frustrated at how she simplified a frustrating situation. Growing up? Things change? No, that can’t be it. What’s the function of this behavior? Why does he have these elevated sensory issues about his arms and upper body now? Is there something medical going on?

But you know, we were both right. I think there’s more than meets the eye here, and at the same time, he is changing. He is growing. His moods, likes and dislikes, the things that set him off and calm him down, the things he likes to request, the things he enjoys doing and doesn’t enjoy now – it is all changing with the passage of time from childhood into the teen years.

God help us all. Help me to figure it out. Help me to find new and adaptive ways to help him get what he needs to feel centered, calm and at ease with himself. Help me to not lose my mind when a boy who loved taking showers, loved the sensory input he got from the water beating down his body or soaking in a warm bath, now hates being naked and wants to get done with bathing as fast as possible so he can Get. His. Shirt. On. Now.

With this latest set of new challenges and with the school year limping on its last legs for our other kids (Hamza is already out, and this is Amal’s last week), I suggested a much-needed one-day getaway to the one place I knew has already been a homerun for us: The Beach.

Ahhhh, the beach. Sun, sand, surf. Jumping the waves, building sand castles, picnicking, lying lazily on the warm sand, unplugged and unwound (well, we had our phones, but they were stowed in our beach cart and not glued to our hands).

There’s not much that Lil D enjoys doing, though we have trialed masses upon masses of activities, toys, gadgets, games and apps with him to try and get him to engage with something. The beach and swimming pools have been fairly consistent homeruns for him. It’s a bromance that elicit smiles and good moods when nothing else works. In the midst of all the difficulties and self-injurious behavior Lil D was engaging in last spring, we spent spring break on a beach in South Carolina and saw him crack a smile and ease his burden for a glorious 2.5 days – 2.5 days of light in a time of utter darkness that I will eternally be grateful for.

We drove two hours to Virginia Beach and found a great beach off the Chesapeake Bay on the recommendation of a Facebook friend who knew a thing or two about autism, our situation, and what we needed in a beach. This place was great – bathrooms and parking close by, gentler waves and best of all, less crowded.

It was a glorious day of beautiful sunshine punctuated by a brief rainfall at lunchtime that had us scrambling and laughing as we ran for the shelters. The food was good, the sun and surf inviting, and spending time together free from work, school and home was priceless. But there was a thorn in my side: Lil D wasn’t feeling it like he has in the past. The sensory issues he’s been having robbed him of the full enjoyment I so craved for him.

It wasn’t bad, but it wasn’t particularly great for him either. We had him dressed in swim trunks and a full-sleeve tight Under Armor shirt to provide that of pressure and coverage around his arms and shoulders. We had hats and hoodies ready for him as needed. He entered the water just a few times, but it just didn’t do it for him.

There were several minor meltdowns with him lying face down, trying to bang his head on the packed sand as I provided arm and head squeezes. Eventually he grabbed his dad’s straw hat and pulled it down over his ears and then wore a thin hoodie sweatshirt on top of that. He looked rather ridiculous, but only when he had his head and arms covered did he calm down.

In previous trips to the beach, the connection between Lil D and ocean bordered on magical – playing in the tumbling waves brought him joy, and he would go farther and farther out until one of us would coax him back to shallower waters. There’s something about the water, whether at the pool or the ocean, that buoys his spirit and calms him, makes him happy – that elusive happiness I so want to see him enjoy.

But not this time.

We still enjoyed our day trip. Amal and Hamza had a blast. We went with another family, who we’ve traveled with in the past. They are a pleasure to be with and are very understanding of our various limitations and concerns due to Lil D’s severe autism.

Over the years, I’ve struggled to not peg all my expectations of a good time and happiness during family trips on how Lil D does on that trip – how he handles it and whether he enjoys it. We are a family of five (seven with my in-laws), and wrangling the moods, needs, wants and desires of everyone, especially when we take a trip anywhere, is a big job.

I want all of my kids to enjoy any activity we do as a family. But I’ll be honest — I’m always extra anxious, extra hopeful, extra prayerful for Lil D. I want him to have a good time. I want him to enjoy, especially when we go to the beach. That should be a slam dunk for him, and when it isn’t, I must swallow my disappointment and focus on how nice it was for everyone else.

I was chatting with a friend of mine the day after we returned home; telling her it was a nice trip, but that Lil D wasn’t feeling it. She said to me, “That’s ok. It’s not all about him. The other two are just as important, and if you and Bhai (my husband) had a good time, that matters a lot! And it’s healthy for you to see it that way.”

She is right. So much of our life is tailored to Lil D and his special needs because it has to be. But it’s not always about him. There is Hamza. There is Amal. There is my husband.

There is me.