Neverland Without a GPS

I just had to fill out some paperwork on Caleb and it literally sent me back to bed. At 10:30 AM.

The paperwork was simple enough—it’s an intake form for a summer speech and occupational therapy clinic. In total, it was six pages of questions about Caleb’s functioning at home. I know it will be valuable information to the therapists, and I am so grateful that they are so interested in helping Caleb gain independence and function. I am so grateful that he is able to attend this clinic. I am so grateful that there are amazing, giving, interested people who go to college and study how to help kids like Caleb and then make a career out of it. It’s an abundance of riches showered upon Caleb and, by extension, the rest of our family.

So why did it knock me out?

For six pages, I had to rate questions like: “My child accesses the sink and obtains all grooming supplies.” Caleb knows he has to brush his teeth, and he can move the brush around his mouth, but unless I go back over his work, his teeth are not adequately cleaned. 22Q kids have lots of dental problems so I need to navigate the Sonicare toothbrush around his mouth, floss his teeth and then brush his teeth with ACT Restore because he can’t swish and spit.

Another statement was: “My child chooses clothing that is appropriate for the time of day, season and occasion.” Caleb can dress himself with modifications like draw-string pants and pull-over tops. Without guidance he will choose flannel pajamas in 102 degree heat and a short-sleeved ventilated t-shirt on a 28 degree day. I never thought about him not being able to figure out what to wear based on the temperature. I had thought he was doing really well, but this questionnaire slapped me with the unwelcome realization of all he is unable to do.

At the end of the 20 or so minutes it took to complete it, I was exhausted. It’s taken me several hours to understand why. This is a huge improvement over when he was a very young child. Then, I would fill out this type of paperwork and spend the rest of the day exhausted. I  just kept going, never taking time to digest the toll it had taken. I don’t think I could afford to do that at the time. After over 18 years of practice, now I do take the time and allow myself to break down a bit. It sounds odd, but this is a present to myself.

These types of questionnaires (or IEP meetings or regular visits with the developmental pediatrician) are exhausting because they make me account for all the things Caleb can’t do. They remind me just how far we swing from the typical world. I usually go through a day performing the tasks of several adults in my care for Caleb. From showering him head-to-toe to preparing and cutting all of his food, to his bedtime story every night, I am on automatic pilot. It’s been so long that the only time I realize how much I do is when I catch strangers looking a bit too long as I tie his shoe in the supermarket or order for him off of the children’s menu. The world sees a 6’1” young man. I see a five year-old child.

I have several boxes filled with evaluations, questionnaires and IEPs from almost two decades of Caleb’s life. I know they are useful tools for all of the amazing people who teach and lead my son to the greatest independence he can obtain. When I hand them back to whoever requested them, a tiny chunk of my heart goes with them. Forced to evaluate what he can and can’t do, great volumes of my energy leave my body with each answer.

It’s taken me 18 and a half years to finally recognize this phenomenon. And it’s taken me that long to allow myself to feel the sadness, rest and recover after filling them out. I hope that moms of younger kids with special needs will read this and allow themselves the time to recuperate, instead of always pushing forward and always pushing through the pain. With all of the demands we face as caregivers, we need to care for ourselves in the same way we care for everyone else.

I have decided I will reframe all of these situations. Instead of letting them drain my energy, I am going to visualize myself giving energy to those who requested my answers. There is a huge difference between what is taken and what is given.

Caleb is all set up with a Disney movie in his room. I’ve got a date with a bowl of popcorn and my DVR.