The first lesson I learned when Asher was born two months early was that the less you disrupt a preemie the better. Their sleep cycles in the hospital in an incubator are drastically shorter than the sleep cycles in the womb. Because of this, the nurses bundle the infants care into one sequence to disrupt them as minimally as possible. Within a few days, I learned the care routine and it became my new full-time job while I was on maternity leave. I changed Asher, took his temperature, then held him to my chest while they fed him through a tube that ran through his nose down into his stomach. Asher slept peacefully while I held him for two hours, frozen in the same spot until it was time for the next care cycle, and then I held him again for two hours until my eight-hour shift was over. I did this Monday through Friday with a short half hour break for pumping and lunch before leaving to get my daughter from day care. I never dared disrupt him between feeds. I sat in the chair, half asleep myself, or watched Asher sleep while his head rested on my chest and his hand pressed against my heart, feeling and listening to the familiar beat he was so accustomed to before he was born.
One morning I walked into the hospital to find Asher unswaddled between feeds, and the physical therapist gently manipulating his feet. He was just a few weeks old when he had his first physical therapy visit. I didn’t know it at the time, but it would be the first of hundreds of therapy visits, but it would also be the first time Asher’s physical milestones would be emphasized and prioritized above his mental health. The sleep he needed to grow and let his brain develop was trumped by the need to begin therapy on his clubbed feet.
There was one more monumental meaning in this visit, because upon my entrance the physical therapist took the time to show me what to do to stimulate his reflex, then she urged me to continue to do it as often as possible throughout the day. That’s when it was sealed, the second lesson I learned. It was my job to perform the tasks for proper development of my child.
It was the first of a multitude of responsibilities that were heaped on me little by little from Asher’s earliest days of life until his Autism diagnosis at 4.5 years old. I had to stretch his neck multiple times a day to fix his torticollis. I had to manipulate his hands and body to roll over. I had to do hand over hand to get him to properly grasp toys, turn pages and push buttons. There were no tasks that Asher did that weren’t facilitated by me. The common practice for therapy was to teach the parent, the primary caregiver, the mother, me, to perform his therapy day in and day out. And boy was I praised for practicing so diligently. I was mistaken for a therapist by PTs, OTs, Speech pathologists and anyone I talked to in depth about his care. I knew all the maneuvers and all the milestones and how to get my child to meet them. Only he wasn’t meeting them. He wasn’t even close. And while I was a great student and did my homework religiously, I was met with failure. And the more Asher fell behind the more urgently I was pushed to continue my efforts. I was doing a great job, I thought, because that’s what the professionals were telling me.
It wasn’t just me that was failing. So were the therapists. So much therapy for one kid and Asher was barely progressing. I watched each therapy session intensely and asked a multitude of questions to educate myself and keep up his care. Care I thought was necessary to catch him up to his peers. To function. When Asher was around ten months old, I watched his physical therapist take his hands and push them into the ground while she manipulated his legs and twisted his body to put him in a sitting position. As she did this, I listened to my son whimpering and whining while he closed his eyes in discomfort. It was the first time that a red flag was raised. Not just in my mind, but in my gut. He wasn’t even rolling over yet. Why were we practicing sitting up? That’s when I realized every therapist wasn’t created equally and I began to question and seek out different therapists. I fired that therapist the next day and began a search for another one. I started going through therapists quickly and didn’t stop until I found one’s that felt right.
It took years more to understand the full scope of what I needed from a therapist and what my son truly needed to thrive in therapy and in life.
HERE IS A LIST OF WHAT I DISCOVERED TO BE SIGNS OF A GOOD PEDIATRIC THERAPIST
- The therapist follows the child’s lead.
If my son wants to play with a plastic bag, then that therapist better play with that plastic bag. I can’t count how many times I watched and have had to help facilitate a session that became a power struggle between my son wanting to play with one thing and the therapist trying to get him to play with something else. Something they had in mind for their session. Something they considered functional play. The sessions never amounted to progress, and I was the referee while the therapist never adjusted their plan to meet my child’s interest.
When Asher was around two years old we found an amazing occupational therapist. She played with a plastic bag during each session, getting my son to laugh and play and he would even shock us by saying sporadic words while he played. Something he didn’t do once in the entire year we had been seeing a speech therapist that was too rigid in her ideas of play to allow my son the freedom to enjoy her sessions.
2. All communication is recognized.
After years, I realized that many therapists would ignore my son’s attempts to say no or make choices because he wasn’t displaying a response the way they wanted or expected him to. For instance, if he was staring at an object, instead of accepting he was looking at it to make a choice, they would wait for a verbal response or try to get him to point. If they had just acknowledged his clear attempt at communication, the frustrations in the session would be greatly reduced. Even when he clearly shook his head to indicate “no”, and pulled his hand away from a task, a clear communication, they would reach back out and try again. Over and over again, ignoring the “no’s” and the limits my son was trying to put on his body. It is so easy to ignore the non-verbal communication of our disabled children yet if a typical child says “no”, we would never continue to grab and push to get to do a task they clearly didn’t want to do for the sake of meeting a goal or milestone. Why should a disabled child’s basic right to say no be trumped by the need to meet benchmarks set for typical kiddos?
3. There is consistent modeling WITHOUT hand over hand interaction.
Hand over hand, a practice used to guide a child’s hand to perform a task is a commonly used method during pediatric therapy. The problem is the science has been confirming for years that modeling is a much more effective teaching tool and hand-over-hand actually does not work at all. According to a research article in the Council for Exceptional Children: “Passive modeling was overall significantly more effective than hand-over-hand modeling.”
Another major problem with hand-over-hand is the ability for a therapist to easily override a child’s right to say “no” to a task. I have seen and practiced myself for years hand over hand thinking it was what I needed to do to help my child. What it was really doing was showing Asher what he couldn’t do. He couldn’t say no, he couldn’t decide on his own what tasks he wanted to participate in, and he couldn’t even try it for himself. It is a prime practice for learned helplessness.
I think of the years of hand over hand I subjected Asher to and know it was traumatizing for him. I know this because once I stopped and didn’t allow anyone else to do it too, he became less body defensive. He began allowing me to hold his hand and sit with him with no expectation. It broke my heart to realize I had been losing his trust all those years, but I could appreciate that at least I realized it, stopped, and was able to build trust back between Asher and I. Pretty soon, I was getting sweet giggles and kisses just like daddy. Kisses I never got before because I never earned them.
4. They never require a child to perform a task before moving to the next or withhold a desired reward for completion of a task
A good therapist would never make your child do a task before moving onto the next. There should never be a relationship in life or in therapy in which you only get your needs met if you meet the other person’s needs first. Reciprocation is important to learn for building healthy relationships, but if we refuse to engage until a person has complied, we are setting up a dangerous dynamic that creates mental health issues for years to come. No psychologist would ever condone this behavior in adult relationships or family dynamics, and so it should never be practiced in therapy.
5. The most important sign of all – THEY ARE HAVING FUN!
Therapy should never be something a child dreads and it should never be a job. We all know the best way kids learn is through play. If they are playing, then they are learning. Accepting that every child plays differently and on their own terms will help allow a therapist to be flexible enough to teach our disabled children while they play. Your child will never learn if they are constantly on the defensive. JOY OPENS THE FLOODGATES FOR LEARNING. If you prioritize joy, you will be prioritizing and supporting your child’s health, happiness, and intrinsic motivation to learn.
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