My name is Shari Harvey. I am a Pediatric Occupational Therapist that had the pleasure of working with Bella Grace and her family for over four years.
Pediatric Occupational therapy practitioners work with children and their families to promote participation in meaningful activities, what we call “occupations”. Occupations are important because they impact the individual’s health and well-being, foster meaning, and purpose in life. They also shape our identity.
The first time I met Bella Grace, she was around 2 years of age. As a novice therapist, I was anxious to start therapy. At that time, Bella Grace was using supplemental oxygen, required periodic suctioning of her trach and was non-verbal. She did not sit up on her own. I had never worked with anyone quite like her and had no idea where to even start. I laid her down on the mat and started to assess her movements, focusing on development. I moved down to her tiny hands and with a swiftness she grasped my finger and gave a palpable squeeze. Bella Grace instantly smirked when I gave an animated response. She was ready to play. For most children, play is the number one occupation.
We all use play to develop our skills and navigate our world. We use our senses to help us succeed in play and to learn independence. Children use sensory processing to interpret their perceived world. They need it to coordinate their body movements safely, to use the right amount of force to successfully drink from a cup, or to discriminate their mother’s voice in the next room from the other background noises in the house. When a child has differences in sensory processing, noises, sights, sounds, smells all become “too much”, or “not enough”. They may search out certain stimuli in their environment or avoid it at all costs. We are all sensory beings, and we use our processing to help ourselves regulate our emotions, to listen and learn, and to find tools and activities that help us feel “calm but alert”. In OT land, we call this “the just right” state. My “just right” may be different from yours. It is necessary to understand what individual needs a child faces, because a dysfunctional sensory system can impact everything! It impacts motor development, how we accept different food textures, or accept everyday tasks like brushing our teeth and taking a bath.
Every encounter with Bella Grace revealed little windows into her drives and motivations. I continually assessed her needs. Were sensations in her environment too much or not enough? What activity helped to organize her senses and allow her to be successful with a particular activity?
Bella Grace continually challenged me as a practitioner, and for that I am extremely grateful. Occupational therapists simply assess a child’s current needs and build on the strengths observed. Finding what motivates them and gives their life meaning, what improves the family dynamic. Can it lessen the caregiver burden when we modify something in the household environment? Bella Grace’s parents and nurses were essential in building on the treatment activities provided each session. We were her students, and she was our fearless teacher. In that respect, each sensory activity prescribed was essential homework.
I was part of Bella Grace’s team. She was the leader, and we did our best to really listen to her needs, realize her strengths, and realistically assist her in meeting functional goals. Addressing her sensorimotor needs was the foundation to help her build on her full developmental potential. I learned so much about a child with Trisomy 18’s abilities and strengths, and for that I am eternally grateful. Occupational therapy can be a great asset to the Trisomy 18 child and their family, and I hope I can continue to learn and grow working with other children like Bella Grace.
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