Talking to Kids About a Parent's Disability

I recently wrote an original article for AbleThrive about tips for talking to kids about a parent's disability. It's something we do every day.  Not that we sit Evie down and conduct a lecture on SCI 101 - it's more something that we have just absorbed into our daily life.

Sometimes talking about Jeff's disability is not even talking at all. It's just doing. It's Evie watching us. It's her helping us. It's her taking it all in.

So I thought I'd share the article here:

My husband Jeff is a C4 ventilator-dependent quadriplegic. Our daughter Evie was four years old when he was injured. Now she’s almost seven. For the last three years, she’s been on this spinal cord injury journey with us.

She’s watched and absorbed everything. And she’s asked a lot of questions – some of which have very straight-forward answers (like, “Can Daddy feel me tickling his feet?”) and others that have more complex answers (like, “Why can’t Daddy feel me tickling his feet?”)

One thing we’ve never shied away from is talking to our daughter about her dad’s disability. How can we not? It’s a part of our lives and always will be. Here are some tips we’ve discovered along the way for talking to kids about a parent’s injury and resulting disability.

1. First and foremost – tell the truth. Jeff and I make it a point to always be honest, even if the honest answer is not always the easiest to say or hear. Sugar coating the truth can lead to false hopes and unfulfilled promises. For example, we don’t ever say, “When Daddy gets better …” because the truth is that Daddy isn’t getting better. Or at least he’s not going back to the way he was before his injury. Instead, we acknowledge Daddy’s new body, his new abilities, and focus on the things we can still do together as a family.

2. Don’t worry so much about explaining things to kids in “terms they can understand.” Kids are smarter than adults often realize. And kids know when you’re “talking down” to them. Most of the time, when we’re discussing the technicalities of my husband’s spinal cord injury, we talk to our daughter the way we would talk to an adult about the subject.

Kids are fascinated with big, multi-syllabic words even if they don’t fully comprehend the meanings. Words and phrases like “ventilator-dependent,” “tracheostomy,” and “autonomic dysreflexia” are part of our family’s vocabulary now. I remember having a parent-teacher meeting with Evie’s former kindergarten teacher, and she told me about how one day during class, Evie just blurted out, “My dad is a quadriplegic and he’s on a ventilator.” The teacher admitted that she stopped in her tracks, eyes wide with fear, and wondered if Evie would start crying. But Evie didn’t. She moved onto the next task in the classroom. The teacher told me she was rather stunned, not only at Evie’s vocabulary use, but also at her ability to be so matter-of-fact about a sensitive subject. Kids are often impressively resilient. I know our daughter has been.

3. Try reading age-appropriate books about disability. We have a wonderful book titled Dad Has a Wheelchair that we got for Evie when she was 5. This book discusses all kinds of disabilities and has great illustrations. Each time we read it, I see a new level of understanding emerge. Just a couple weeks ago, we read it again. And when we got to a picture of a man in a wheelchair raising his arms, Evie pointed to it and said, “Oh, he must be lower than Daddy.” What she meant was the man’s injury is at a lower level on the spinal cord than Jeff’s because he can move his arms and Jeff can’t.  We’d talked about injuries along the spinal cord before, but this was the first time she’d put that information together with an illustration. She gets this. She truly does. And books about disabilities help to facilitate that understanding and often provide a way for children to communicate that knowledge.

4. Be open about the care that goes into managing a disability. This one may depend on your comfort level, but for us, we are very open and forthcoming about the care required to keep Jeff’s body functioning. I perform a lot of Jeff’s care while he is in his bed. And we keep our bedroom door open for almost everything – an indication that Evie is always welcome. Most of the time she floats in and out of our room and pays no mind to the fact that I’m feeding Dad a snack or trimming his beard. She’s seen me perform trach care on Jeff (and is forever grossed out by the boogers), she’s watched as Jeff is suctioned to keep his lungs clear, and she’s been present – even helped – as I transfer Jeff from the bed to his wheelchair using the overhead lift (which she’s, more than once, taken a ride on herself).

The only time we close our bedroom door is when I’m giving Jeff a bath, or when I’m managing his bladder and bowel care. Still, even though Evie doesn’t participate in these duties, she knows what’s involved. She knows Dad can’t do these things on his own, and she knows what Mom does to help. (She also knows that these are the kinds of privacy details we don’t really share with other people.) It’s important to us that Evie knows what’s going on. We don’t keep anything hidden from her when it comes to Jeff’s care.

5. Remember, it’s okay if you don’t have all the answers. As parents, we often feel pressure to take on the role of teacher – imparting knowledge and answering our children’s questions along the path of life. Jeff and I do that to the best of our ability. But the truth is, we don’t have all the answers. Some days we’re not even sure we’re doing any of this right. All we can do is keep going, keep doing what’s working, and learn from our mistakes.

Jeff and I are doing our best to teach our daughter that despite the colossal change we’ve experienced, life still goes on. All three of us entered our new world at the exact same moment nearly three years ago. We’re all figuring this out together. Learning as we go. And learning from one another.