Stacy is a mother who was born with Charcot-Marie Tooth Disease Type 4C. She shares her daily life as a mother living with a disability on her YouTube channel Getting There.
Stacy often gets asked questions about parenting children with a disability. She shares a video giving the following advice.
Do Your Research
Stacy’s first piece of advice for parents who have children with disabilities is raw and honest. She says, “Take everything that you ever thought about people with disabilities, and like, throw that in the trash.”
“You know, channels like this where the person with a disability has the belief they can do whatever they want.“
Stacy recommends doing your own research about disability. She says to gather information by searching the internet and putting yourself out there. However, Stacy encourages parents to develop their own way of thinking because there may be information out there that could be problematic and portray disability in a negative way. Look for positive role models for your children.
Stacy tells first-time parents to children with disabilities to change the way they view disability. She says, “To me, (disability) is something that happened to me, something that has been in my life. It hasn’t been a great thing, I would have certainly preferred not to have dealt with it, but it’s something over the years I have learned to deal with and to overcome.”
Stacy suggests one of the first steps as a parent is to identify the needs of your child and what can be done to assist them in living their best life.
What To Do If You Are Expecting A Child With A Disability
One of Stacy’s subscribers asks, “What piece of advice would you give to a parent who’s expecting a child with a disability?”
Stacy’s answer to this question is a simple one. If a parent finds out they are going to have a child with a disability Stacy advises them to “do everything you would have done if your child would not have a disability.”
“One of the things that helped me most in life is that my mom always treated me like I was normal like I was just like everyone else.”
Stacy gives credit to her mother for pushing her to accomplish the things in life that she wanted to. Stacy’s mother did not show pity towards her in any way. “That is something that I think is a gift to anyone that is disabled because it really teaches you to put yourself out there. To really carve your own path and to not be afraid of what other people think or anyone judging you and really just taking control of your own life,” she says.
Staying Up To Date On Current Research
It is important for parents to stay educated about their child’s disability. Stacy suggests for parents to stay up to date on current research of their child’s disability. Over time, new treatment methods, exercise programs etc. may become available.
Stacy believes there is a balance with staying up to date in new advancements. She says, “I don’t think that you want to put so much focus on that with your child because you never want to worry too much about whether things are going to change or not.”
Mistakes Made By Parents
Stacy says one mistake that she feels parents who have children born with disabilities might make is to be too consumed by anxiety and grief to experience the joy of having a new addition to their family. Stacy suggests for parents to try their hardest to live in the moment so they do not miss out on anything.
Talk To Your Child About Thier Disability
Stacy says growing up there was always an open dialogue concerning her disability. Stacy and her mom would talk about her disability, the challenges she faced, and the day to day occurrences.
Stacy feels that if parents do not talk about their child’s disability with their child the silence sends a message that it is not something to talk about. Stacy says that talking openly about her disability gave her confidence in the long run.
“Focus on what can be done. Focus on the idea that, you know, you’re going to have to do things differently, a lot of things are going to be hard over the years, but there is a way to accomplish pretty much everything,” says Stacy. She reminds her viewers that parenting is all about working together to make sure your child has everything they need to accomplish their dreams or goals.
Be sure to check out the full video above to hear all of Stacy’s advice.
Share this post with a parent who has a child with a disability!