When your child with disabilities becomes an adult with disabilities
Our daughter, Kelsey Croissant is 25 years old. Like many women her age, she loves country star Luke Bryan. And like many women her age, she’s not into her parents’ favorite music (which happens to be classic rock). She enjoys traveling to bluegrass festivals, visiting family, swimming, taking long walks in the park, and touring art museums.
But unlike many women her age, Kelsey isn’t celebrating earning her degree, getting settled into her first job, or navigating the dating world. Kelsey is nonverbal. She is unable to walk. She has seizures. She has lost all purposeful hand movements and requires constant care.
Kelsey has Rett Syndrome.
What is Rett syndrome?
Rett syndrome affects approximately 1/10,000 females. Girls with Rett syndrome experience normal development until 6-18 months followed by a period of developmental regression. The features of Rett syndrome include intellectual disability, seizures, absent or reduced speech, and stereotypical hand movements, as well as breathing and digestive issues.
We first suspected something when Kelsey was about a year old. She was not crawling well and had not begun to pull to stand on her own. But she did have a 20 word vocabulary and was self-feeding.
At 14 months old, we saw a developmental physical therapist who said that cognitively and socially she would be fine, but she had low muscle tone. We began physical therapy three times a week. That was difficult for a young couple living far away from family, but, as parents you do what is necessary, and we made it happen.
As Kelsey’s challenges became more worrisome we embarked on a diagnostic journey, bouncing from neurologist to neurologist until finally around age 2, we received the diagnosis of Rett syndrome. Shortly afterward, her developmental regression began. Our baby girl was losing all purposeful hand movements and the few words that had made us beam with pride at one year were gone.
Kelsey’s diagnosis has plunged us into a world we never knew existed. Living with Rett syndrome is a roller coaster –there are ups and downs. As a family we have really learned to appreciate the blessings of each day. We are grateful for the support of the experts at UAB and GGC. That’s where we can ask all of our “crazy” questions that you feel like no one else can possible understand! And Kelsey is doing her part to advance research by participating in the Rett Syndrome Natural History Study.
Where do we turn now?
We can’t say that these past 25 years have been easy. But we remember that our girl is Kelsey first and foremost, and we do not define her based on her diagnosis. She has her own personality and likes and dislikes. We never limit her due to her disability. She has been water skiing, flying in a two seater airplane, bowling, boating, and fishing.
But now, as a young adult, Kelsey has aged out of many of the programs that have supported her. There are a great deal of resources for families with children with special needs, but once they reach adulthood, the challenges are different and the opportunities for inclusion are much more limited.
That’s why we have become actively involved with a grassroots movement in Columbia to develop a mixed-use community for adults with disabilities to live independently, but with support. We are early in the planning process and welcome the involvement of anyone with an interest and a heart for ensuring a future for Kelsey and all men and women with disabilities.
October is Rett Syndrome Awareness Month. To learn more about Rett syndrome, visit www.rettsyndrome.org .
To become involved with the Croissants in their community plans, contact email@example.com
Robert and Sharon Croissant