Watching Zoe Grow: A Parent's Perspective On Adolescence With CP

Reflections on daily life, advocacy, and hope for the future

Parents often look for community and support as their children grow. Hearing from parents provides unique insight into the realities of raising adolescents and young adults with cerebral palsy, including the joys, challenges, and strategies that help children thrive while fostering their independence and confidence.

This post features Colleen, a parent from Old Bridge, New Jersey,  and her 13-year-old daughter, Zoe. Colleen offers honest reflections on Zoe’s daily life, growth over the years, and her hopes and concerns as Zoe navigates adolescence and looks toward the future.

Can you tell me a little about your child and what life looks like for them right now?

“My youngest daughter Zoe has spastic quadriplegic (mixed tone) cerebral palsy. She is 13 years old and is non-speaking but understands everything we say and conversations she listens to as well as complex story lines. Zoe also has some additional medical needs such as requiring a tracheostomy for her airway and a gastronomy feeding tube for all nutrition, medications, and water. Her life is similar but also different to other families. Zoe has grown a lot and is a funny yet moody teenager. Her daily routine is getting up and ready to go to school, coming home to relax and watch her YouTube on her iPad, and hanging with the family on the weekend. We often take Zoe to see shows throughout the year. Coming up is Beauty & the Beast Musical in Philadelphia. She loves live music and especially the orchestra, the Nutcracker Ballet, the Rockettes, Musicals, and also Disney World (we take an annual trip in the winter to Disney World). We have assistance from the nursing care she receives most of the time and are truly grateful for the support. Both my husband and I work full time, and we have an older 19-year-old daughter who is neurotypical.”

Looking back on your child’s early years, what supports or experiences do you feel laid the foundation for who they are today?

“When Zoe was in the NICU for the first four months of life, we played classical music in her pod every day. In addition, we talked to her a lot all the time and spent a lot of time trying to get her to laugh. We were not afraid of her Cerebral Palsy diagnosis and embraced this immediately so that we could set up whatever she needed to be stronger and more successful.”

As your child has entered adolescence, what changes have you noticed in how they see themselves or express their independence?

“Zoe likes to pick her outfits, hair accessories, and jewelry. She is also more stubborn now as an adolescent. She definitely has crushes on boys. When she says NO, she means it.”

How do you support your child in advocating for their needs at school, in therapy, or in daily life?

“I am always advocating for Zoe by listening to staff around her, asking Zoe what she wants, then implementing and respecting that. In addition, I am in constant communication with Zoe’s Child Study Team as well as her providers and teachers to try to figure out what is working and what is not. We also bring advocates to meetings with the Child Study Team because it is not easy advocating on your own. Sometimes it means leaving a show or the Disney Park early because Zoe is tired and done for the day. But also being a cheerleader to encourage her to keep going when we go for a walk with her assisted walker. Zoe attends an out-of-district school in a self-contained program. We have been working on bringing her back in-district and are trialing it 2 days a week. There are a lot of ups and downs but we have to stay the course for the benefits.”

What hopes do you have for your child as they continue to grow over the next few years?

“I hope that she finds a friend and/or companionship. I also hope that Zoe uses her AAC communication device more with strangers and such. She still struggles to communicate with others and often prefers to rely on our ability to speak her language by reading her body language and gestures to know what she wants. She uses her AAC device when she wants to and does it completely appropriately to ask for things. I would also like to see her use her AAC device to engage in conversation with her non-disabled peers.”

As a parent, what are some of the biggest questions you have about the transition to adulthood?

“I believe it is important for our kids to be in the presence of non-disabled peers and she has a rightful presence to be there. Real life happens around non-disabled people. This is something we are working on getting Zoe to be a part of in her community — which she enjoys — but it is not always easy to navigate. Some of my concerns are: Will she find a companion to be a friend or life partner? Who will take care of her as we age and get older — we notice it is getting more difficult to care for her as we are not as strong and agile as we once were? Do we need to modify our home to expand for her needs? Will Zoe be able to communicate her needs and wants independently without us to others?”

Colleen’s reflections offer a deeply personal and honest perspective on raising a child with cerebral palsy, highlighting both the joys and challenges of adolescence, and planning for the future. Zoe wants to do the things that many children her age do, and with advocacy, persistence, patience, and love, the possibilities will only grow as she grows.