At Independence Plus, Inc., our patients’ success is the reason we exist. It is our greatest source of pride and accomplishment. Please read what it looks like from the perspective of loving, committed parents.
By Mark SooHoo
The arrival of ABC’s new sitcom “Speechless” has opened the door for conversations with families like ours who have a special needs child. We’ve found it may be hard for family and friends who want to stay updated on our son’s progress, but may not fully understand the nuances of his routines and therapies. That’s why we sent them notes entitled “Everything you wanted to know about Jackson but were afraid to ask” in hopes this would encourage more people to engage, ask questions, and be an active part of his journey.
By way of background our son Jackson was born at just 22 weeks and was given a 5% survival rate based on his gestation and weight at birth. Over the course of his next four years Jackson has made ongoing progress, but continues to face many challenges from breathing (his lungs were underdeveloped as a result of being premature) requiring him to be trached and on a ventilator, as well as from his cerebral palsy, meaning he requires assistance and monitoring at all times.
That’s where our fantastic team at Independence Plus comes in. We’ve been fortunate to have a wonderful team of home nurses who assist Jackson with his daily care, therapies, and most importantly, monitoring his special medical needs. For example, because of his trach he requires regular suctioning to allow him to continue to breathe. Our home nurses have taken the time to get to know Jackson and his idiosyncrasies, which allows us to focus on our most important job as parents – ensuring Jackson is loved and safe at all times.
One of the areas “Speechless” explores his how a special needs child impacts the entire family unit, and how quickly home nurses or aides become “part of the family.” This has most certainly been the case for our family, and we have come to rely on the notes and suggestions from his care team and view our Independence Plus nurses as integral parts of our team. The impact on the family is also quite real and one area that is challenging but often hard to understand from the outside.
Parenting a special needs child such as Jackson requires a dizzying amount of coordination – from his lengthy monthly medical supplies, a wide variety of daily medications, and extra visits to doctors, specialists, and therapists, in addition to his daily school schedule. Coordination with home nurses also adds a layer of complexity as schedules are sometimes in flux due to vacations or illnesses. Balancing this ecosystem of care is important to ensuring Jackson has the support he needs, and is one of the unseen challenges we have shared with our family and friends.
For families like ours, we encourage you to reach out and start the dialogue with your circle of family and friends. We have found people who want to be supportive, but don’t know how. They don’t want to ask “dumb” questions, don’t want to intrude, or don’t want to bother with what may seem like an already busy schedule. That’s all the more reason to open up the conversation and provide simple, honest information about your situation. We have been supported by friends and family near and far, and are glad so many of them feel empowered to ask questions and understand Jackson’s unique situation beyond “how are you?,” as the answer to that question is often complicated.
We are keenly aware how fortunate we are to have Independence Plus nurses, and recognize not all families are as fortunate as ours for a variety of reasons. If you know a family with a child such as Jackson, we encourage you to reach out, ask questions, and offer to stay involved. Every family handles situations differently, but in our experience most appreciate knowing others care enough to ask and want to understand their journey a little better. We hope more families will watch “Speechless” and gain a fresh understanding of the many ways special needs families rely on “special” help from family, friends, and trusted caregivers such as the talented team at Independence Plus.
Speechless, a sitcom about the challenges faced by a family with a special need’s child, debuted on ABC (Wednesdays) on September 21, 2016.