This is an exerpt from letters to my MP (Member of Parliament) and MPP (Member of Provincial Parliament). I encourage you to contact your local politicians and ask for change.
I am a parent of three young children, two with significant medical needs. I am actively involved in Ontario Early Years Centres as a parent-client and volunteer. I am also involved in my school board’s Readiness Centres as a parent-client and volunteer. Professionally, I have worked in the field of Special Needs for 15 years in a variety of roles from Support Worker to Special Education Teacher and Instructor at a University. My interests are health and developmental services for preschool children and their parents. I see a vast disconnect between the needs of parents, their children and health care services.
The voices of parents are not being heard by the health care system. Children’s needs are being overlooked by well-meaning general practioners. Parents are dismissed and concerns are not investigated.
This is one mother’s story:
When my son was born he was blue. I could see it in his fingernails. They sent us home from the hospital and then I went to NINE different doctors. They kept saying he was fine, that he had his father’s colouring. By the time I got to Sick Kids Hospital he was dehydrated and his oxygen levels were 38%. He had emergency heart surgery that night. Now we’re dealing with brain damage from oxygen deprivation…
Parents who actively advocate may be successful in getting health care services for their children. Parents who are not successful advocates cannot get services for their children. These are the parents who you will not hear from. I live in the socially and economically diverse area of Lakeview. I spend my days working with parents who cannot access appropriate health care services for their children. Parents don’t know what to ask for. They don’t know how to keep asking until they get the care their children deserve. These parents are new immigrants, English Language Learners, from low income households, have limited education themselves, have mental illness or addictions.
The bottom line is these people are parents, who are trying to help their children. These parents are trying their best to find places for their children to learn and grow. All parents want their children to be successful. We as a society know the importance of the Early Years in a child’s development. The government of Ontario has instituted Ontario Early Years Centres to help foster early childhood development. Investment in early childhood development transfers to educational success and economic success and growth.
Personally, I have been very fortunate in accessing healthcare services for my children. My daughter was diagnosed with Prader-Willi Syndrome at 15 days old. She is now a delightful toddler. My son was diagnosed with Duchenne Muscular Dystrophy just before his third birthday. He will turn five this year and is an active Kindergartener. To get both diagnoses I had to actively advocate, approaching many doctors to tell them ‘something’s wrong.’ My baby is nearly 7 months old and has reaped the benefits of excellent prenatal care and an excellent pediatrician. I want this for other parents and their children.
I am writing about parents’ experiences with the health care system at https://halfpastnormal.wordpress.com/healthcare/
I invite you to check in occasionally to hear parents’ voices.