My first experience as an advocate was more than twenty years ago. I greeted my eight-year-old sister Chavon, who had fiber-type disproportion myopathy, as she descended the wheelchair lift on her school bus. It was Halloween, and she was in tears.
Bullies on the bus had taken the candy she had received from her class Halloween party, she told me. I let her pass me to enter our house and I stepped onto the school bus. Continue reading
No hospital is error-free. The most important partner in your child’s health and safety is you. You can help keep your child safer by sharing information and asking questions. Continue reading
In our house, fall means changing leaves, homemade Halloween costumes, and a little nail-biting fear. Respiratory season is upon us, and that always adds an element of dread for families of kids who are medically complex.
As a caregiver, I feel most empowered when I am informed enough to do more. Learning and sharing have become essential to my role as a caregiver. Finding out what works best is most effective when I can crowdsource helpful tips, reviews and advice from others who have walked this path. Continue reading
At two months old, my son Richie received his trach, and he was ventilator dependent until he was 18 months old. Gradually, he was able to tolerate a speaking valve and capping, all working toward decannulation. It seemed to us that things would be easier once he no longer had a trach, but it isn’t quite that simple. Continue reading
Both parenting and advocacy focus on creating the best possible future: for our children to thrive and to be accepted and understood. It can be a heavy load, and it’s easy to mix up which role we need and when. Continue reading
Therapy is a necessary part of our lives as parents of children with special needs, and sometimes it can feel like a chore. When therapy goes badly, it can be disruptive, at best. We have experienced therapists who seemed unsure of themselves and didn’t understand the importance of partnership. We had a therapist tell us … Continue reading
Five years ago, I didn’t give much thought to the way my local hospital managed the quality of care they provided. Then our son was born with multiple medical issues. Witnessing the complex medical care he received made me reflect more on the importance of diversity and inclusion among those making decisions about our health … Continue reading