When I was growing up, I was very shy and quiet. My parent’s friends would always look at me and say, “Cat got your tongue?” I was quiet in school and had terrible anxiety.
Once I became a mom, that all started to change. There is just something about being a mom that makes the protective instinct come out. When you add in being the mom of a child who is medically fragile, that instinct seems to double. It must.
You have so much more to remember and stay on top of – medications; diet and feeding; choking; liquids; dehydration; edema; positioning; therapies and doctor appointments. With all of that comes a lot of other people and their opinions in your and your child’s life.
I truly believe that parents know their child the best. We are there always, doing the daily caregiving. We are their strongest advocate and know the most about them.
So, you see I had to really learn to speak up to all the people, though it did not come naturally to me!
When my daughter gets sick and her doctor prescribes medication, I must speak up and ask for the liquid form as she can only take thick liquids by mouth and she does not have a g-tube. Or when a therapist wants to do an activity with her that is not good for her mental illness, I must speak up and say, “We need to do a calmer activity.”
When she is hospitalized, I really must be on my toes and have my voice on to advocate for her. The hospital staff has to understand how important it is for her medications to be given on time and that she must have IV fluids slowly because of her edema. I have to speak for her as she cannot communicate these needs.
I have been a parent now for 17 years, and when I look back at how quiet I was compared to who I am now, I have completely evolved into a very bold and loud advocating parent!
The Family Support section offers lots of great information to help you advocate for your child and family.
During the COVID-19 pandemic, we asked parents of children with disabilities and special health care needs to share their tips and stories about caring for their children during difficult times.