Tommy's Journey with Cerebral Palsy

While Tommy has been involved in therapies for the better part of his recent life, he has not allowed that to dampen his spirits any. Currently, there does not appear to be any indication that other areas of his function have been affected, and he is a highly intelligent and aware little man. He very much loves to read, following along with each page and image, waiting for his favorite scenes so he can beam brightly at the page or the reader, excited to get lost in a new adventure or relive one of his favorites (Love You Forever, The Giving Tree, any Dr. Seuss books). He also loves Ms. Rachel, and will not hesitate to loudly request her videos be played if a therapy is proving to be particularly demanding.

Cerebral palsy is a neurological disorder that affects a person's movement, muscle tone, and posture. It is caused by damage to the developing brain either during pregnancy or shortly after birth. In Tommy's case, he began to fall behind on many of his gross and fine motor skill milestones, so early intervention was contacted in an effort to help him develop alongside his peers.

Tommy's journey with cerebral palsy is nothing short of inspiring, as he has faced every obstacle with courage and determination. For children living with cerebral palsy, it can be difficult to predict how the child's affected skills may develop, or even how unaffected skills might later be affected. Many of the current therapies involve waiting to see how the child will develop to create a specific plan targeting any affected or delayed areas of development. Recent studies are emphasizing the importance of intervening in the child's development much earlier to help capitalize on the growing brain and the ability for younger individuals to learn new skills in areas they previously were delayed.

Neuroplasticity is the brain's ability to change its structure and function in response to new experiences and stimuli. For children who are delayed or missing developmental milestones, it means they can still actively create those neurological connections to be able to develop those milestones, even if the method or result is abnormal from the standard development process. This increase in learning ability at a young age means different therapies can take hold and produce results at ages much younger than previously thought. For Tommy, his gross and fine motor skills are the most affected areas of his development, and he has struggled in assisted and unassisted sitting, standing, and rolling over. Many transitional movements babies naturally engage in are not possible for Tommy due to his increased muscle tone in his lower extremities coupled with his lower tone in his upper core, torso, neck, and arms. These jointly contribute to his difficulty in maneuvering his body in space to where he would like to go.

Our role as his parents is to ensure he has as many opportunities to grow and develop and learn new techniques through various therapies while he is still so open and accepting of new stimuli. One of the most typical ways this is done is with general Physical and Occupational therapies. These hour-long sessions are held both in-home and at different locations depending on the therapy, where the program is run through, and what the goals of the therapy session are, etc. These general therapy sessions are designed to help Tommy gain a better understanding of controlling his body through space, as well as recognizing the various movements he is able to go through so he can work out a way to complete those movements on his own with enough assistive tools or outright support.

Assisting his general therapy sessions are various tools designed to guide and support Tommy's journey of discovery and independence (things that assist without taking away the potential for autonomy from the child). Some of these tools are listed below, for reference;

Bamboo Braces - Arm braces designed to allow some hinging of the elbow joints while still providing feedback on the joint to advise when to engage different muscle groups for weight bearing through the arms and hands. Memo shoes - Support shoes designed to allow flexibility in the ankle joint, promoting a healthy and natural gait while stepping. Compression Clothing - Designed to help Tommy understand where his body is in space, and to become more familiar with various controlled movements. Athletic Tape - Similar to the above, this assists with correct posturing of his limbs, and to allow Tommy more body awareness.

These are a few of the tools we've already been employing alongside Tommy's therapy sessions, and there are always more targeted tools for more specific intervention/assistance. On top of the generic therapy, we've been in talks with a speech therapist to help with Tommy's ability to eat and chew solid foods. He is a very good eater, but currently unable to actively chew and swallow solid foods. Purees are the thickest food he is able to comfortably take, and swallowing liquids in general can be troublesome.

Aside from these, we've been working with a Dynamic Movement Intervention [DMI] therapist with Kids by the Sea PT (Molly- www.kidsptbythesea.com), an occupational therapist from ReImagine OT (Jenny - www.reimagineot.com), and a whole team of individuals who have created an atmosphere designed to assist children with developmental delays in ways that are more dynamic and allow for better potential development (Susan, Claudia, Honey Pie, and the whole team at Dancing Palomino Ranch). They've been an integral part in Tommy's journey, and some of his biggest motivators who helped us to evolve his current support system and plan in his day-to-day therapies we employ at home.

For DMI therapy, it's based on integrating congenital reflexes caused by gravity (subconsciously protecting the body when falling, for example) into the child's range of available movements. The DMI courses are two-week intensive therapy courses tailored to the child and his or her specific needs and development delays.

In early January, for our first DMI intensive, Tommy was brought to Sarasota, FL for the Kids by the Sea PT group. This is a unique group in that they incorporate a barn location with live animals as half of the therapy. This has Tommy riding on a pony using the natural gait of the pony to help reinforce the different therapy techniques he was learning over the rest of the sessions. Following the intensive, Tommy had an immediate and definite improvement on his neck strength, head control, ability to use both arms equally (previously favored the left arm), and he was generally able to engage in rolling transition movements more frequently and more comfortably than before the session.

There was enough of a measured improvement in Tommy's general motor function that we've gone ahead and set up a second intensive with the same group in late April of 2025. We've also enrolled Tommy as a demonstration child for an upcoming educational seminar in Ontario to teach newer DMI-approved therapies to various licensed therapists around the world.

We're still early on in his journey, but want to thank you for taking time to read and learn about Tommy's situation. Our primary goal is awareness, as this can help foster a world where children affected by cerebral palsy can still grow and thrive in their surroundings because knowledge and support are so readily available.