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When Rett Symptoms Change

My 12-year-old daughter, Cammy, has Rett syndrome. Some days, Rett syndrome has Cammy. During the early-onset stage, which typically occurs between 6 and 18 months of age, children may experience abnormal hand movements, difficulty sitting independently, and speech or language problems. Cammy was no different. Repetitive hand movement…

Back-to-School Shopping for My Special Needs Child

When I was young, back-to-school shopping motivated me to get excited for the upcoming school year. My best friend, Dana, and I started shopping for supplies together in sixth grade, when our parents let us cross the busy street to Target by ourselves, and continued through high school. It was…

How Our Special Needs Family Travels More Efficiently

The first step is admitting you have a problem, right? My name is Jackie, and I’m fanatical when it comes to preparing for a vacation. It’s unclear whether this compulsion would have presented if we’d had a “typical” family, or if it only manifested because of my daughter Cammy’s Rett…

Fundraising With Kids Can Be Fun and Impactful

Kids are absolutely incredible fundraisers. They have a million different ideas. With an adult’s help organizing, they can raise so much money and awareness. One of my childhood friends, Megan, is an elementary teacher. Upon learning about my 12-year-old daughter Cammy’s Rett syndrome diagnosis, Megan immediately knew how she…

Why We Love the Y

I grew up a YMCA kid. We lived across the street from the Leaning Tower YMCA in Niles, Illinois, a landmark for anyone who grew up on the north side of Chicago. My dad loved the replica of the Leaning Tower of Pisa so much that when he added…

How to Create a Bucket List for a Special Needs Family

In the spring of 2013, while visiting cousins, my daughter, Cammy, who was 4 at the time, saw her 10-year-old cousin Carly’s summer bucket list lying on a table. I read it aloud to Cammy. “Go to the beach. Go to a museum. Sleep over at my cousin’s house.”…

Giving Doesn’t Have to Cost a Thing

We can always give something. Some give money to their favorite charity. Others donate their time to distribute goods at a food pantry. Many do a random act of kindness by paying for the person behind them at a drive-thru. People give thoughts, prayers, hugs, and condolences during a tragedy.

What It Means to Carry Others Through

Whether we realize it or not, we carry someone through on a daily basis. A dad makes breakfast for his son to carry him through final exams. Teammates cheer from the sidelines to carry their team through to the end zone. A friend delivers coffee to carry a mom…