Switching Therapists Has a Big Impact on Our Lives
My 4-year-old son, Cayden, has been receiving multiple therapies every week for years. He started physical therapy when he was an infant, then speech therapy, and eventually occupational therapy. All are important for those with infantile-onset Pompe disease, which Cayden was diagnosed with at just 1 month.
Finding pediatric therapists can be tricky at times. Thankfully, from birth to age 3, Cayden qualified for early intervention, a publicly funded program that supports children with certain developmental delays and disabilities. Programs are offered in all states, and I was pleased with the way Pennsylvania’s operated.
During Cayden’s three years in the early intervention program, he saw several therapists. His occupational therapist remained the same, but he had two different physical therapists. The first left shortly before he turned 1 to accept a new job offer. We were sad to see her go, but we absolutely loved working with the therapist who replaced her.
For his last year of early intervention, Cayden also had a speech therapist who worked hard to get him an eye-gaze communication device. Now, he doesn’t use it. Instead, he uses an iPad or his own voice to communicate.
Once he aged out of the early intervention program, he was sent to an intermediate facility. It’s sort of like a preschool, but only a handful of children are in each class, compared with a typical preschool classroom that can hold more than 15 children at a time. Cayden was able to receive all of his therapies at the intermediate unit, but I worried about him only attending twice a week for three hours.
His therapy sessions now lasted about 30 minutes, while we were used to sessions lasting anywhere from 45 minutes to an hour. I also wasn’t able to be present for these sessions, which made it hard for me to see how he was progressing each week. Hearing how your child did in therapy is completely different from actually seeing it with your own eyes.
I decided to pull Cayden out of the intermediate unit after a few months because he kept getting sick and needed to be hospitalized for months on end. To me, it just wasn’t worth the risk.
However, I knew Cayden would still need his different therapies, as they really do help him. So I reached out to our insurance company and asked for their help in getting home-based therapies for him. This isn’t typical for children his age, but they understood and validated my concerns because they were aware of how sick he’d been during his hospitalizations.
A few weeks after that phone call, we were able to get set up for home-based therapies. We love the therapists who work with Cayden now. His new physical therapist just started a few weeks ago, but she’s been amazing. She’s very hands-on and has a bunch of ideas to keep things interesting. Sometimes Cayden doesn’t even realize he’s in a therapy session because he’s having so much fun.
I’m a bit worried, though, because Cayden is returning to preschool this school year. It’s a normal-sized preschool, and he’ll be attending five days a week. Besides my fear of him getting sick, I’m nervous about how he’ll react to switching therapists yet again. While it’s nothing he hasn’t faced before, it takes him a little while to trust and warm up to new people. I can’t blame him. After everything he’s been through medically, he has every right to be wary of new people.
I’ve no doubt that Cayden will do great with his new therapists. He wins over everyone’s heart. But it’s always a bit upsetting to say goodbye to our current therapists.
Note: Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pompe Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Pompe disease.
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