Stories about: Parenting

Cerebral palsy and mental health: What parents should know

child with cerebral palsy trying to communicate mental health concerns

Amy’s* jaw was black and blue, but she hadn’t been in an accident. Instead, the 15-year-old, who has cerebral palsy (CP) and is nonverbal, had been punching her own chin — but why? Her family, along with Dr. Elizabeth Barkoudah, and her colleagues in the Cerebral Palsy and Spasticity Center at Boston Children’s Hospital, searched for answers. “We thought we had considered everything,” says Barkoudah. Yet a slew of approaches — from a full-body workup to a special brace aimed at preventing the teen from hitting herself — proved fruitless.

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Four things I learned at the Cardiac Neurodevelopmental Family Symposium

View of the crowd at the Cardiac Neurodevelopmental Family Symposium

I’m sure most parents treat clinic visits as I do… an opportunity to get every last drop of information out of your child’s doctors while you have their undivided attention. So, when the opportunity presents, you take advantage of a full day of learning about your kiddo.

I had that chance recently — along with many other Heart Center parents — at the day-long Cardiac Neurodevelopmental Family Symposium. And while the learning was important, there was so much more that came out of the day.

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Give the gift of reading and compassion

Girl reading book

More and more, children’s book authors are featuring characters in their books who are challenged with physical and emotional conditions. With so many kids either managing these disabilities themselves, or becoming familiar with these conditions through others, it can be enlightening for young people to experience life through the eyes of complex characters who aren’t defined by their disability.

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Your child and chronic pain: How to ‘dial down’ the agony

Mom comforts teenage daughter who has chronic pain

Sheer panic. It’s all I can remember.

Out of the blue, while enjoying his morning snack one day, my toddler started having seizures. And they didn’t stop. It was terrifying. He was admitted to the intensive care unit. Between seizures he was scared, flailing on the hospital bed, totally out of control. I wanted desperately to help soothe him but didn’t know quite what to do. My first intuition was to distract him. I remember grabbing a jungle pop-up book out of my diaper bag and springing the pictures open right in front of his face to block out all the doctors scurrying about. I made loud roaring sounds like a tiger to drown out all the scary medical noise. It didn’t help.

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