Do you ever feel like your entire life is spent in the car driving to an appointment?
Then the next half of your day is spent in a waiting room while a litany of therapists sees your child?
I will enthusiastically raise my hand high!
Since my son has been two years old, we have been going back and forth to therapy centers. Our schedule has been jammed packed with Occupational Therapy, Physical Therapy, Speech Therapy, Family Therapy, Feeding Therapy, and various Autism related therapies. In the early days, we were traveling to multiple centers and had more than six appointments a week. All of this traveling didn’t include any of the doctors we see. My son is also medically complex. We have collected more than twelve specialists since his birth, and many of them want to see him multiple times a year. Between therapy and the doctor, I have spent the bulk of my five years as his mom on the road, coffee in hand, and trying to find my sanity by finding friends in the waiting rooms.
Over the years he has collected diagnosis that requires therapy in so many areas, but as his mom, it has gotten to a point where I have had to prioritize what is the most important. As we have navigated the pediatric therapy map, I have learned that sometimes more therapy isn’t always beneficial for my son.
One of the most challenging aspects of navigating the therapy game is knowing when it’s time for your child to take a break or leave a specific discipline. There is so much push to get therapy and early intervention done as young as possible, but there is also the need for our children to be children. We have taken breaks, ended treatment, and even switched centers numerous times.
When is it time to take a Break or Leave?
Little to no Progress is Made
My son has spent the bulk of his life in and out of feeding therapy. Of all of the treatments we have attempted, this has been the most unsuccessful for both of us. We have seen at least three separate therapists at three clinics, and all of them have promised they had approaches that would work. The bulk of our progress came from the very first center. His therapist worked tirelessly with him on his oral motor skills. At this clinic, he mastered how to suck from a straw, blow with his mouth, and stick out his tongue. These skills were difficult for him to achieve, and we were thrilled to find him learning. However, after these big leaps, all progress from him ceased. His therapist diagnosed him with severe oral apraxia (a severe form of oral motor processing delay), oral dysphasia (inability to swallow), and immature chew (he could not grind any food). She was at a wall, we were at a wall, and after two years my son was making no progress. We decided there was nothing more she could do to help him, and we took a break.
Therapy Makes Behavior or Reactions From Your Child Worse
After our break from our first feeding therapist, he got a feeding tube placed. He was growing and thriving. We moved to a new clinic with a different approach. However, his behavior at this point became unmanageable. He worked with an occupational therapist to help him with being able to touch food, look at food, and put food up to his mouth. Unfortunately, the trauma from his history of choking on food was too fresh for him. He acted out, protested, cried for entire therapy sessions, and eventually, his OT and I both felt the therapy was not helping. She wanted to bring in a Psychologist to deal with the trauma; I knew he just needed a break. We left the clinic.
Your Child has a Developmental Burst
In addition to his feeding issues, my son also deals with Global Dyspraxia (A Global motor processing delay where the brain and body are out of synch). His fine and gross motor skills have been delayed for most of his life. We focused extensively on OT early and then moved to Physical Therapy. The last clinic he attended Physical therapy he was at he had a developmental burst. It’s a period many therapists describe where the child is motivated and eager to learn. For many children, this means they will learn things quickly, are motivated to learn, and will move through the therapy goals with ease. We started therapy with him struggling to climb stairs, ride a trike, or jump. Within months, he was climbing stairs with little assistance, jumping and riding a trike around the entire clinic. He still had delays, but he had made so much progress so fast that we agreed a break was in order. His therapist and I didn’t want to add more skills to his plate at this point. My son needed time to work at home with me, and learn to play with the new capabilities. We took time off and focused on implementing a home-based therapy model given to us by the therapist. We will need to return to Physical Therapy in the future, but for now, we are enjoying our time off to play and learn on our own.
Now that my son has moved from early intervention to age five, we have gotten to a point where we know when enough is enough with therapy. As his mom, I can identify when he is making progress, and I can see when he is stalling. I have been able to swallow my pride and recognize that he may never develop specific skills and to push him to learn is hard on the both of us. I now focus our time and energy on the areas where he is motivated to learn, makes progress, and doesn’t exhibit negative behaviors.
As a parent, it is ok to make the tough choices. In the special needs world, many of us feel like we don’t always have a choice. We have so many people telling us what is best for our children. I can assure you that sometimes the best interests of your child are not what the experts want. We know our children best, and it’s ok to advocate for them to have breaks from therapy or to implement treatment at home. We know what will work and won’t for our kids, and we may not have credentials, but we do have degrees in how to be our child’s parent. Make sure to take the breaks, allow your child to enjoy being a child, and try not to feel guilty. Parents need breaks too!