There were many times over the years that we just couldn’t do it anymore. Casey had multiple therapies every day, at least one doctor’s appointment a week, and homework (stretches, time in the splints, time in the stander, working on using different tools like switches, etc.). Early on, we made sure that we did everything we were told. Some days we were so busy checking off all the to-do boxes that we would not have time to spend as a family at all.
As time passed and we built relationships with Casey’s care team, we would express how stressed we were trying to do everything that they said to do. We learned that it’s okay to not check every box, every time. There are some things that are more important than others. There are some things that maybe need to be done, but you can skip a day here and there.
We knew that we were on borrowed time with Casey from the moment she entered this world. We weren’t worried about how she did at school, or that she may not walk. We just wanted her to be happy and for us to be able to spend time together as a family while we had time. We learned that time as a family was just as important, if not more so, than time at the therapy clinics (or wherever).
We let Casey set the pace, and if she was having a great day (or week) and was up for a lot, then we would check off a few extra boxes. On days that she just wasn’t up for it, we learned to just roll with it. Setting priories and goals was important. Being okay when goals weren’t met was just as important.
For the first few years when Casey was getting therapies through the school, we would fight hard each year in her Admission, Review and Dismissal meetings (ARD) to make sure that we had continued services through the summer. We were always worried she would regress if we missed those appointments. We would also add therapies during the summer with a third party provider to cover gaps in the school coverage. We did this for years.
As Casey got older, making the trip to clinics became harder and harder. We started taking breaks, real breaks. We would go for a month (or a few months) with no therapies. We would do Casey’s stretches with her, and her nurses would do range of motion and stretches as well. We would find ways to mix her stretches and exercises in with fun activities (especially during the summer when we could get in the pool).
Casey’s therapists all worked with us to make sure that she didn’t regress while on breaks. They taught us exercises to do, helped us to get any tools or equipment needed, and were always just a phone call away of we needed anything at all. We missed the social element of being around the other families, but the time we could spend with Casey and as a family is something that I will always be thankful for.
Taking a break is okay. Don’t just stop doing things or going to appointments though. If you want to take a break, plan ahead. Get some home tips from the experts and have an idea of when you will come back (or what you want to see happen before returning).
Casey’s Circle, a nonprofit in Austin that we started in honor of Casey, recently hosted a Tuesday Talk about taking breaks. Some of the therapists from Dell Children’s provided a lot of great resources, exercises, and tips for families. These resources http://caseyscircle.org/therapy-tips-wound-care/ are now available online, as well as video of the presentation.
Give yourself a break, too. We all want to check off all the boxes, but sometimes there are other things that are simply more important. It’s okay, we all need a break.
The Family Support pages offer great information on parenting children with disabilities, self-care, and respite.
After making the difficult decision to medicate your child, with time and on occasions, old symptoms return or new ones appear. Once again, you’re faced with what felt like an already-made decision - to medicate higher or more, or not.