I would apologize for my long absence, but I’ve decided the intermittent writing is just going to be something my blog readers get used to. I have two kids with disabilities and a full-time job as a special education teacher. There are many nights that I want to come home, eat pizza rolls, watch Orphan Black, and pass out to sleep. It’s a good kind of weary, the kind of joyful weary that rings in your bones and heart, but it’s a weary nonetheless.
Even now, when we’re off for the summer, writing is hard. Perhaps because “off” is a relative term. We’re sort of drowning in therapies. Diva has dance-movement, music, physical therapy, and speech therapy, plus she had orthopedic surgery (three procedures at once) and is sort of immobile. Little Man has summer camp, dance-movement, music, Theraplay, occupational therapy, and in-home therapy.
I’ve been thinking a lot about how our kids’ schedules can be so “therapized”, especially when teachers and therapists are giving us long lists of things to practice at home. It hit me when I asked for summer homework for Diva, and was encouraged to have her listen to music less / need music less often. It bummed me out. Here’s the thing — this is not school. This is home. She is an 8 year old girl, going on 9, and she loves music. Music is her passion, her hobby, the way other people might craft, play baseball, or collect stamps. She knows the lyrics to hundreds of songs, asks for favorites, and dances in her room in her pajamas. Yes, I know she needs to work for longer periods of time at school — but that’s school. She deserves to live a life filled with joys and interests. She has the right to make choices and spend her leisure time doing preferred things, just in the same way as any of us.
I’m guilty of that as much as anyone. I remember being the teacher who was frustrated that families weren’t practicing XYZ at home, that they weren’t using this or that tool or technique. My view is more nuanced now. Yes, my kids need practice, but they also need freedom. They need freedom to just be themselves. With my son, that means that he needs time to play computer games and line up cars. With Diva, it means watching a favorite movie and listening to music in her room. We need the opportunity to be a family, and “homework” is only ever going to succeed if it helps us achieve that goal. Our homework is simple – read stories, talk with each other, play, go for walks and explore the great outdoors. It doesn’t look like therapy, but, damn, it’s healing — for all of us.
Sometimes I wonder if the therapy life is actually more of a problem than a solution. I know there is a point where there is too much. Too much of everything. I wonder what it tells my kids about themselves and how I love them. Do they think that I love them conditionally, that I want them to be fixed, or that I think there’s a cure? I don’t. Does therapy add more joy and feelings of competence, or does it add frustration and unworthiness? Whose goals are we achieving – theirs or mine?
When we choose therapies, those are the questions that I ask myself. We have a speech therapist who spends her time creating communication access for Diva right now, rather than drilling expressive and receptive language or pictures. We choose expressive arts therapy over applied behavior analysis every time, because it gives my children their voice. It gives them a feeling of safety and celebration. I don’t want them to ever look back on their childhood and wonder what was wrong with them. I don’t want them to look back on their childhood and wonder where mom and dad were, where the fun was… I want pride in the work they have done to master their goals and achieve their dreams. I want laughter and love, unconditional love