Throughout my daughter’s early years, our lives were encompassed by appointments. I know there are other mothers who can relate to the speech appointments, the occupational therapy (OT) appointments, the pediatrician appointments, the psychologist appointments, and the appointments to make an appointment.
The word seems simple enough—appointment. But to a mother of a child with specials needs, it’s another meeting, another date on the calendar, another scheduled time, another engagement, another arrangement. It’s tiring just remembering those days. Rendezvous. That’s what I should have called them. We have an OT rendezvous. That sounds like so much more fun and maybe I would smile when thinking of all the past rendezvous, rather than frown at all the past appointments.
Don’t get me wrong. I acknowledge the importance of most of these appointments. That’s why I made them. But none of us decided to be a mom so that we could fill our calendar with these types of events. My daughter is past those appointment days and I certainly don’t miss them. But today I was remembering one of my previous experiences, or dare I say…appointments.
About nine years ago when my daughter was four, there were occupational and speech therapies to attend. Sometimes we went to both in a single day. OT was very important at the time. My daughter had fine and gross motor skills that needed improvement, in addition to a lot of sensory issues. The Occupational Therapist at this time, we’ll call her Ann, was good at what she did. My daughter made a lot of progress under her guidance.
This morning we were headed to an OT appointment. As I walked into the therapy room behind Ann and my daughter, two young women followed us and proceeded to sit down on the play mats. As Ann shut the door behind them she turned to me and said, “These are college students studying occupational therapy. You don’t mind if they watch, do you?”
All during my daughter’s therapies: OT, speech, Applied Behavior Analysis (ABA), people have come and gone to “watch”, “observe”, “learn.” The assumption was always the same, “You don’t mind do you?”
At the beginning of this journey I didn’t mind. People need to be trained. They need experience. I was more than happy to provide our story if I could somehow contribute to the education of the next line of therapists. Over time though, I found myself wanting to be less the trainer and more the mom.
As the OT session started, Ann begins to spill out my daughter’s life, and in essence, my life and my family’s life. Everyone sits smiling, so interested, so full of questions, wanting to know more. Ann begins to explain to the students all the things my daughter couldn’t do when she started with her and continues to explain all the things she has now accomplished due to OT.
Now one of the students has a question for me. Here it comes. The reason I have agreed to have my life divulged—so that others can learn their trade and use this knowledge to help other children like my daughter. The woman is an international student and she asks me what it was like for my daughter to get her U.S. citizenship. Hmmm.
During that time nine years ago, I remember feeling, “Yes, I do mind.” My daughter’s history and life is not open to everyone. Looking back, this feeling was due to many factors. As I mentioned, there were many, many weekly appointments. Also, ABA therapy was a continual affront to my family, five days a week. At this point in time the ABA had been going on for two years and my house had a revolving door for therapists.
Notice I said “house.” During this time we had very little privacy. People were in my house on a regular basis. My daughter needed them and therefore I needed them, but I fantasized about the day my house would turn back into my home.
Although I still believe my daughter’s history and much of her life is personal, I am once again willing to share things that may help others parents. I guess the “Yes, I do mind” nine years ago was in response to me needing some personal space. Now that I have my home back, I have more control over what I share and when I share it. I never thought I would be OK with this again, but I’m back to “No, I don’t mind. What do you want to know?”
