Feeling Lost in the Forest

At Cooper’s annual comprehensive eye exam today, the optometrist said he was having some difficulty tracking. 

She explained that he turns his head to look at things, rather than move his eyes and use his peripheral vision, and gave me handouts that listed about 20 different exercises that we were to do at home, for at least 15 minutes a day.

I get the time commitment; I had vision therapy myself at Cooper’s age and again in my mid-20s, which is how I know that he has to be willing to do the exercises with me for them to be effective.

There were five handouts, each densely packed with activities. Just for once I wanted to be a “C” student, not an overachiever.

I asked if someone could demonstrate how to do the exercises so I’d know if we were doing them properly, especially since Cooper has difficulty taking direction from me (maybe because I’m his mom, not his therapist?), and was told that there wasn’t time to do that.

The optometrist noticed that I was feeling overwhelmed, and reduced the homework to one handout, with four simple exercises. The other activities, it turned out, were for when Cooper had mastered the first level (I hope to see that day!).

Then she recommended I bring Cooper back for a follow-up appointment in six to eight weeks, which is when I snapped.

I think she was expecting me to nod my head enthusiastically and say, “Of course!” with a huge smile.

Instead, I blanched, and said, “Six months. We can return in six months after doing these vision exercises.”

She said she needed to put in the notes that the patient should return in six to eight weeks.

I explained that I needed to have him do the exercises consistently for four weeks, and then schedule a follow-up, and that would certainly be more than eight weeks from today since we also need to start doing his oral-motor exercises and get him acclimated to his back brace to treat his early-onset scoliosis.

I added that if she puts six to eight weeks in her notes, then the person booking the appointments will tell me I was supposed to come in sooner when I call in a few months. I said I didn’t like being told that, since it made me feel like I am a bad mother.

And then I realized what was really on my mind. It wasn’t this doctor, nor was it this particular problem (after all, it isn’t unusual for an 8-year-old to have difficulty with tracking).

It’s that rarely a month goes by that Cooper isn’t evaluated by or taken to a follow-up appointment with one specialist or another, and no one has yet to recommend a quick, inexpensive fix that doesn’t require any action, effort, or oversight on my part.

Many times I feel as if I am the only one in Cooper’s universe of therapists, teachers, and doctors who is cognizant of each and every part of him that needs repair. (My kind, patient and loving husband is certainly in the loop on everything, and is as involved as he can be; there just seems to be an endless refrain of “We should be doing more of X” in my head).

The list of issues and challenges and difficulties and insufficiencies and inadequacies seems to get longer as he grows older:

Hypotonia (low muscle tone), which affects his

- eyes (weak ocular skills), so we’ve been given vision exercises to do at home;

- mouth (weak oral motor skills), so there’s a specialist and regimen of daily exercises that I need to implement this week;

- handwriting (weak core/abdominal muscles);

- overall energy and stamina (sitting up all day at school is hard work for his weak core, so he’s tired when he comes home from school, and gets upset when asked to do homework that requires him to do any writing), so he’s more willing to do homework assignments if I type what he says.

He also has issues with motor planning and eye-hand coordination, so sports aren’t high on his list of preferred activities. Actually, they’re on his permanent “No, thank you” list.

Autism affects his ability to cooperate and participate in the vision and oral-motor exercises.

Being on the spectrum also increases his resistance to engage in physical activities after school and on the weekends that most kids enjoy, whether it’s riding a bike or just spending time at the playground. (I am grateful that he eagerly joins his classmates for recess at school.)

He has sensory issues that affect his interest in food (he finds many smells offensive) and his taste buds. He's a picky eater with a short list of acceptable foods, and says that most food “tastes odd” to him (this is after he has decided to try a new food, which happens about a handful of times each year).

So Cooper’s plate was already full when we went to the orthopedist yesterday to have his spine X-rayed and assessed.

Scoliosis runs in my husband’s family, so this has been in the back of our minds from Cooper’s infancy, but I was impressed that my globally delayed son had achieved early onset of this spinal disorder.

After that doctor prescribed a back brace, to be worn 18 hours a day, I turned to Cooper and said, “How much do you want that Wii U you’ve been saving up to buy?”

This brace might be worn for as few as two years or as many as 11, since Cooper is likely to continue growing until he’s 19, and the goal of the brace is to maintain his current 32 degree curve and avoid having to do surgery on his spine.

Since I’m trying to be as blasé as possible about having to wear a brace, I told him that there are things that we need to do to take care of our bodies, and that we don’t always have a choice about what those things are. I reminded him about my colostomy (not the near-death part of it, of course!) and said it was gross and something I couldn’t really forget about, and wearing the brace is something he will eventually get used to and it certainly won’t be gross like a poop bag.

I try to focus on the improvements, the gains, the new skills mastered—and then the bar gets raised, again and again.

So today, in the spirit of welcoming a new year and celebrating Rosh Hashonah, and reflecting on the past one, I’m going to set aside all the suggestions and “To Do” lists and notes from doctor’s appointments.

I’m going to cherish Cooper’s spirit and sense of humor, and ability to surprise me, whether it’s getting on a boogie board at the beach and loving it or riding a roller coaster by himself at LEGOland last week.

He’s growing up, and he’s going to be fine.