Every child with Cerebral Palsy is a gift and parents of children with CP are some of the bravest, strongest people on the planet. The time commitment and dependency involved is incredible, making feelings of isolation or “being alone” a common occurrence. While many of our resources are dedicated to helping children, the MyChild team also feels strongly about helping, strengthening and empowering parents in any and every way that we can.
First, we’d start by highlighting the fact that feeling isolated as a special needs parent is neither unique nor something to apologize for. Ellen Stumbo took to her blog, as a parent of a child with Cerebral Palsy (and another with Down syndrome), to discuss these feelings, and the post is extremely genuine and honest:
“Families are isolated. They are lonely. People don’t understand them. I can relate….and I’m not sure what to do about it.”
As she notes, there are no simple solutions. Having kids with special needs travel to someone else’s house can cause problems, as can a visit to the park or having children over to your own home. We will readily agree with her that there are no easy solutions; instead, we hope to provide ideas and inspiration to parents through others’ thoughts on the topic.
Kristina Smith Blizzard wrote a piece on the range of emotions that special needs parents can feel, including grief, denial, anger, guilt and isolation. Each of these is perfectly understandable and can be quite challenging, to say the least; with all the love that parents of a child with CP can have, they are also human and susceptible to waves of wide ranging emotions. Her suggestions for coping, and thriving, in this role of a special needs parent, include:
- Blogging (and reading others’ blogs)
- Connect with resources/services able to lighten the load (like us!)
- Educating yourself to know more about your child’s condition
- Celebrating “inchstones”
- Joining Facebook Pages dedicated to parents like you (like ours!)
- And more
Each of these empowering suggestions can create tremendous benefits.
Cindi Ferrini has thoughts on isolation avoidance for special needs parents that focus on relationship building and developing connections. Her suggestions tap into the idea of creating a village, so to speak that can help connect parents while spreading out the tasks required for individual success. Her suggestions include:
- Connecting with teachers outside of the classroom to develop a better understanding
- Writing encouraging notes to others who are struggling, even if they are not special needs parents
- Allowing others to help
- Tracking helpful efforts by others in case that task is needed again
Her list goes well beyond these four bullets and is a great read. Many of these items align with SCAN of Northern Virginia, a great group that suggests developing relationships, avoiding being defined by your role(s) as a special needs parent, volunteering, getting out of the house from time to time and searching for support and depending on it.
Unfortunately there is no simple solution to help with the wide range of emotions parents of children with special needs face every day. Our organization was founded on the premise of making resources more easily available to parents of children with Cerebral Palsy so that they had more time to focus on their children and implement early intervention where possible. However, we also foster a community of amazing parents on our Facebook Page and hope that if you haven’t already, you will join us there.
What ways have you found to avoid feeling isolated as a special needs parent?