Growing Up in Therapy

I’d wager that almost every child with a visual impairment ends up in physical, occupational, speech, etc. therapy at some point in their life. When our kiddos are very little, it seems every therapist in our zip code wants to visit or be on our child’s team. When Eddie was diagnosed at four months old, he was immediately seen by each of the above-mentioned people, and we gladly welcomed them into our home.

As a mom raising a child who was blind, I was open to any and all guidance. I asked to see his teacher of students with visual impairments weekly instead of quarterly, which was the norm for our rural region. Luckily, she lived nearby and secretly visited more than was directed, which was an extreme blessing for us. For an infant or toddler, the therapists and teachers were enthusiastic and unarguably important.

As Eddie entered the school system, we learned that he would get those therapies from the school. The household of visitors we were now used to phased out and the school staff worked hard but didn’t have much time to work with us. Their enthusiasm was present, and Eddie was making progress, but we began to be left out of the loop.

We kept private therapies and still have a couple, but that was now the burden of our own finances and health care coverage. Luckily, we did have insurance, but this is untrue for many families. Those children rely on the schools to cover their therapeutic needs, and the system is burdened with large caseloads, lack of providers, and rural districts with minimal assistance. So, over the course of a few school years, it’s common for therapies to get reduced.

As an educator, I’ve seen many children start off with robust therapies, and as they age, time is reduced until consultation is what remains. I’m not speaking for or against this practice as the decision is made on an individual basis. I’m just saying that over time direct therapy is something that often goes away or is drastically reduced as our children reach middle and high school.

Eddie laying down with his head in his father's lap at the doctor's office

Eddie is reaching the age of asking questions about his therapy, and I’m sure we’ll be faced with tough decisions. Recently, we took him to Shriners (shown in the photo with his Dad) to get braces made due to his orthopedic impairment. He hadn’t been in physical therapy for many years, so we asked the doctor if they felt we should have him reassessed. She asked some very good questions. After which, we came to the conclusion that he did not need to add physical therapy back into his life for now, but we were still able to ask our questions to a physical therapist at Shriners before we left.

As Eddie continues to "grow up" in therapy, I’m sure we’ll have many more discussions just like this. We know Eddie still has much to learn, that part is clear. The unclear part is how/when that instruction should be given and when to make changes for the benefit of Eddie. We’ll look to the professionals to guide us, but as his parents, our "voice" will be the loudest. Simply because, aside from Eddie, these decisions will impact us the most, and we will always know him best.

Working with Your Visually Impaired Child’s Medical Team

Working with the Medical Professionals When Your Child Is Blind or Visually Impaired

Dealing with the Diagnosis When Your Child Has a Visual Impairment

Questions to Ask Your Child’s Eye Care Specialist

Common Questions Asked by Parents of Children Who Are Visually Impaired