Anxiety. Depression. Perfectionism. Guilt. An over willingness to please. Feelings of neglect. These are just a few of the issues experts warn parents to look for in children who have disabled or neurodiverse siblings. There are certainly areas of concern to watch for, but I worry that all too often we ignore the positives. In many ways, our typically developing children can grow and flourish because of the challenges faced by their families.
I know because I watch it happen every day.
My 4-year-old daughter JJ has Rett Syndrome. This is a rare, progressive neurological disorder that manifests in early toddlerhood. It results in the inability to speak, loss of purposeful hand use, mobility difficulties, seizures, feeding issues, scoliosis, and a host of other problems. JJ’s disease has introduced my family to a variety of struggles, including unplanned surgeries, sleep deprivation, and isolation. My husband and I spend much of our time juggling medical appointments, prescriptions, therapies, and visits to specialty clinics.
But this is only half our story.
The other half is one of resilience, hope, love, and connection.
The brightest chapter is JJ’s 7-year-old sister RoRo. Rather than buckling under the pressures brought on by JJ’s disorder, our oldest daughter is happy and thriving. And not despite our struggles. Because of them. Having a sibling with disabilities has led to many unexpected silver linings—most of which I never expected.
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Because my husband and I need to spend so much time caring for JJ, we often ask other family members to help when RoRo needs someone to babysit, drive her to activities, or give her one-on-one adult attention. All this time spent together means my oldest daughter has developed deep, meaningful connections with other people in our family. She is now extremely close to both sets of grandparents and to her great-aunt.
Our oldest daughter has also become much more flexible. Our family often has to reconfigure our days due to illnesses, unexpected medical tests, changes in therapy appointments, or other unplanned issues. Because of this, we have all learned that change is normal.
Our oldest child has also become extremely comfortable with people who have disabilities and differences.
She will approach anyone and talk about anything. She is interested in what makes everyone different and special and she’s matter-of-fact when explaining her sister’s diagnosis to others. I often envy her unself-conscious approach to the people around her.
RoRo also can’t help but be exposed to a network of caring, compassionate people. JJ has a host of kind-hearted people who work with her to hone her skills, overcome her medical issues, and live her best life. RoRo watches therapists patiently guide her sister through daily exercises and volunteers donate their time to help children like JJ. One of RoRo’s favorite moments was helping to test drive the adaptive car that a local non-profit built for her sister.
It’s true that RoRo and JJ don’t have what people think of as a typical sibling relationship. But this is more a blessing than it is a curse. My girls have a connection devoid of the normal sibling rivalries, arguments, cruelties, and resentments. RoRo is her sister’s helper and protector and often acts as JJ’s hands, arms, legs, and voice. She does everything from blowing out JJ’s birthday candles to collecting Halloween candy and Easter eggs on JJ’s behalf. RoRo often brags about how she has a little sister who loves to cuddle and never steals her toys.
Our family’s path through life has been paved with many confusing and stressful moments.
But my husband and I have done our best to model calm and productive ways to deal with these difficulties. At the age of seven, our oldest girl has already developed healthy coping skills that will benefit her in countless ways. Sometimes she asks to go to her room to calm down. Other times she reads a favorite book or watches a silly cat video to cheer up. Like most of us, RoRo is likely to encounter obstacles, struggles, setbacks, and stumbling blocks in her life. But my hope is that she will already have years of coping experience by the time they arrive.
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As RoRo’s mother, I know I need to be on the lookout for problems related to our unusual family situation. But I don’t have to spend all of my energy on it. Instead, I choose to focus on my girls’ deep, loving bond that is all their own. This unique connection often means my oldest daughter is not like other children her age. But RoRo would be the first to tell you that different isn’t a bad thing. It’s just a part of life.