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.
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.
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.
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.
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 A Shared Vision: Partnering with Therapists