Since the start of our journey raising a child with Spina Bifida, my husband and I have been lucky enough to meet many kindred spirits. These are people who have helped us to think differently about disability and who have shaped the way we view this new normal we find ourselves in. Parents like me need connection and advice along the way. We need input from other parents who have experienced similar struggles but we also need input from adults with disabilities– people who have lived what our children are living now. As a child, I did not have a disability. There are some things I will never fully understand about this aspect of my son’s life and so I rely on the wisdom of adults who have been there. I truly think posts like this one from my friend Tonia are so important. While I haven’t met Tonia in person (we’re Internet pals!), I am grateful to men and women like her who are willing to reach out to mothers like me and share their expertise. If you are the parent of a child who has a disability, give some thought to her words and I highly recommend seeking out adults in the disability community who can serve as mentors and friends to you and your child.
When I first met Tonia, she impressed upon me the importance of these relationships between able parents of disabled children and adults with disabilities. She asked if she could share some thoughts for parents, which sounded like a brilliant idea. I owe her (and all my other adult friends) a big old high five. I am lucky to know you cool cats.
Cautions and Kudos for Able Parents Raising Disabled Kids
Note: The purpose of this post is to educate and inform, not to give able parents guilt gut for doing the wrong things. If you did the right things, that’s awesome! If you didn’t do them because you didn’t know what to do but you’re here now and are willing to learn, that’s awesome!
ALWAYS SPEAK POSITIVELY ABOUT YOUR CHILD’S ADAPTIVE EQUIPMENT:
“Your wheelchair is so shiny, and it helps you go where you want to, doesn’t it?”
“Your trach is doing a great job helping you breathe!”
I don’t know where the idea came from that wheelchairs, crutches, trachs, braces, etc. are sad and negative. This could not be farther from the truth. Adaptive equipment is liberating, because it allows us to live the lives we want to live. If your child needs or will need adaptive equipment, think about all the ways it will help them. Then, be sure and talk about it that way with your child. Recognize that adaptive equipment is an integral part of your child. Try not to complain about how heavy their wheelchair is when putting it in the car, or the speed with which your child moves, eats, or achieves milestones.
Whenever I got a wheelchair as a child (even a rental, while recovering from surgery, as pictured below) my twin sister always loved to be close to it and touch it. We did everything together and remain the absolute best of friends. I’m so glad for her enthusiasm and I love that she was never discouraged from coming close to me while I was in it. I’m glad that we were never taught wheelchairs were sad or scary.
FIND POSITIVE DISABLED REPRESENTATION IN THE MEDIA FOR YOUR CHILD (AND FOR YOU):
Disabled representation in the media is low anyway and many of the representations are not authentic or correct and only perpetuate stereotypes and objectification of disabled people. But if you find good disabled representation, it can help your child and you reframe disability for what it is: an inextricable part of your child’s identity and how they experience the world. For a place to start, check out Tonia’s Big List of Resources for Learning About Disabilities.
It’s really hard for me to remember any positive disabled representation on TV, growing up in the 1980s. The one exception was seeing Linda Bove each day on Sesame Street. Follow That Bird was my favorite movie as a little girl, and, perhaps, part of that was seeing Linda fully included, fully capable, and actually portrayed by a Deaf woman. I always loved that Linda was the one who unlocked Big Bird’s cage. Her Deafness was never ignored or overlooked. It was always there but Sesame Street never portrayed her as helpless, sad, or inspirational. She was always just Linda.
MAKE FRIENDS WITH OTHER DISABLED PEOPLE:
We are out there, and it will help your child to see that there are others like them with similar adaptive equipment – maybe even living on our own in accessible housing. It will also help you, as parents, because there are certain things about being disabled that we can speak to. Not to mention, it’s good for your kid’s identity as a disabled person to see that Mom and Dad hang out with people like them, too.
Though I’m not a fan of random strangers coming up and asking me invasive questions (it happens more often than you know…) I sincerely don’t mind when friends ask me questions, especially if they’re able-bodied and have a disabled family member. Neither do I mind innocent questions by kids. My own youngest brother asked, when he was around three, why he didn’t have crutches like me. I told him, “because my legs aren’t as strong as yours, but that’s okay.” From then on, whenever it crossed his mind, he adorably repeated: “Your legs not as strong as mine, but that’s okay!” and nodded with a big smile on his face.
WHEN IN DOUBT, ASK A DISABLED PERSON:
It’s so important to network with other disabled people when you have a disabled child. While we are not all the same, I think you’ll find similarities in experience by disabled people. If you have made that disabled friend who is as comfortable with you as you are with them, and you can have that open dialogue with them, don’t be afraid to ask them for insight. Need to know how to adapt something for your child? Your friend may not know how to do it, but they might be able to give you ideas or a place to start. Need to know how to handle discrimination against your child? Ask a disabled adult. We have been there. Trust us. Want to know what household chores you can give your child that are within their ability? We can tell you what our chores included, growing up.
I still have great memories of washing dishes at my great-grandparents’ house with my sister. It was a big deal, who got to wash and who had to rinse. At five, washing dishes was clearly more fun, because of all the soapy bubbles.
GIVE YOUR CHILD AS MUCH POWER AND CONTROL OVER THEIR OWN BODY AS POSSIBLE:
Part of being disabled often means not being in control of the amount of pain we experience. Surgeries and medical interventions are sometimes necessary and there is no way around them. However, it is important to teach your child to say no and for you, as a parent, to accept “no” as a full sentence and respect it. This is important because your child will encounter people in the world who will want to push your child’s wheelchair or who will ask invasive questions about your child’s medical history (which is what disability essentially is.) If they are not old enough to communicate, “I can do it myself,” teach them to say/indicate “no.” Another reality of being disabled is that we are at a higher risk of being abused. Your child is not under any obligation to be nice or polite if they are feeling unsafe. (For the more mundane instances where your child is exerting their right to say no – to coming inside, to getting ready for bed, etc. – let them choose between two things you’ve decided are acceptable: “Do you want to come inside yourself or do you want me to help you?” “Do you want to take your socks off first or something else?”)
The hospital stay and recovery from the above-mentioned surgery was intense. Thirteen incisions intense. However, in addition to our awesome family who was always there, Tara and I had the two most awesome nurses. In their mid-twenties, they made every day as fun as they could, writing funny things on the boards above our beds: (“I’m a twin!” and “My sister looks just like me!”) They also did their best to make the unpleasant parts of our stay bearable. They were the ones responsible for the New Year’s hats, as it was difficult for us to be away from our family on a holiday.
SET THE BAR HIGH, BUT BE WILLING TO ADJUST IT:
Have expectations for your disabled child. Spoiling them, and letting them rule the roost is not helping them in the long-run. Neither is over-protecting them. Let them be as independent as they can be. If they can take off their own shirt, let them do it every time. Don’t be afraid to give appropriate consequences if they are naughty (timeouts). Be willing, though, to adjust your expectations if you learn that you’re expecting something of your child they cannot physically do (or can’t do yet).
I loved being independent and doing things for myself but there were things I had to wait a while to master. Tying my shoes, snapping snaps, and buttoning buttons required fine motor skills that eluded me until the end of elementary school. In the meantime, my family bought me Velcro shoes along with ones with laces, and my grandma altered all my jeans, taking off all the snaps and replacing them with Velcro, too.
APOLOGIZE AND FORGIVE YOURSELF:
We all make mistakes. Disabled and able-bodied alike. What resonated the most with me was when my mom came and talked to me about mistakes she made relating to my disability or for pushing me too hard. While I remember these hurtful things, they are not what I see when I look at my family. I see people who did their best for me with what they knew. I see parents who taught me to advocate for myself but also didn’t hesitate to stand up for me when I was dealing with discrimination by teachers. I see grandparents who adapted things for me. I see aunts and uncles who always included me. I see people who love me.
So, please, able-bodied parents and family members, educate yourselves. Know that having a disabled child is not a cause for grief. And know that there are disabled adults out there who can offer you a different perspective, help, and support.
I am one of them.
My name is Tonia, and I have Cerebral Palsy. I’m a poet, a disability advocate, and a total media enthusiast. I blog at ToniaSays.