How to Talk With Family About Your Child's Disability

“She will eat when she’s hungry.”
“That kid still doesn’t want to walk?”
“If you didn’t spoil him, he wouldn’t have those meltdowns.”
“He doesn’t have a disability. He’s just a loner.”

Often out of love, concern or lack of understanding, our relatives can make deeply hurtful statements. And during the holiday season, discomfort or possible conflict with well meaning family members can quickly become amplified.

So as parents of children with complex challenges, how should we talk to our families about the needs of our children — or our own needs as their parents?

Before you disregard your relatives as hopelessly uninformed, try using these five principles of communication:

1. Speak the truth.

Instead of fuming silently as your great-uncle or second cousin makes disparaging remarks, speak up and let them know how their words make you (and your child) feel. Because if someone is unaware their words or actions are negative, they cannot begin to make them positive.

As both the head of a school for children with complex challenges and the father of a child with disabilities, I’ve studied and experienced the lasting effects extended families of children with disabilities can have on the mental health of those children’s parents. A supportive family can greatly increase outcomes for both children and their parents alike. At the same time, an unaccepting and unhelpful extended family can be deleterious.

Let your relatives know how they can play an important role in supporting your family — and be specific about what actions they can take to help you.

2. Accept discomfort.

In order to talk about your child’s disability with your family, you are going to have to talk about the disability. This may seem obvious, but it’s often much harder than it appears.

While euphemisms like “learning differences,” “unique,” and “idiosyncratic” are good for beginning conversations about cognitive and physical diversity, your conversations are going to be much more successful if you are direct.

I once heard Sally Shaywitz, the co-director of the Yale Center for Dyslexia and Creativity, plead with an audience of special education teachers to use the term dyslexia. She told us dyslexia is a diagnosis. It has meaning. You can look it up and understand what to expect and how to accommodate and teach for it. It should not be cause for discomfort.

Similarly, in graduate school my professor made my class repeat the term “intellectually disabled” 10 times. She wanted us to understand this was not a pejorative term; we were not insulting children by using it. Instead, we were using a clear description of their disability.

It is critical that we embrace the discomfort that talking about disability may cause in order to achieve true breakthroughs with our family members.

3. Begin where they are.

While sharing our perspectives, we also must understand where our audience is beginning so we can help move them forward. This empathy can be extremely difficult, but it is necessary.

For example, my daughter has cerebral palsy. But my mother describes her condition using the word “spaz.” It is where we started.

If I began by telling her how hurtful her ableist attitudes and language are to my daughter and our family, I would have gotten nowhere. Instead, I started by informing her that the term “spaz,” although callously used to describe clumsiness, was a derogatory term used to describe people with cerebral palsy.

We return to this conversation time and time again, hoping to move her one step further in her understanding of Pearl’s struggles each time we speak. Which leads me to …

4. Persist.

You are not going to move people from ignorance to understanding in one conversation. Yet, through engaged dialogue and persistent effort, you may be able to help them better understand your child and their needs overtime.

A good place to start with many people is with Rick Lavoie’s definition of fairness. He often says a child’s definition of fair is that everyone gets the same thing, while an adult’s definition is that everyone gets what they need, although those needs may be different.

How many of your relatives are holding on to a child’s definition of fair? This may be a way to begin the conversation.

Part of persisting in these difficult dialogues is being clear about your child’s needs. I am sure that, like me, you prepare for family gatherings by talking to your child ahead of time, cooking their favorite foods, bringing their favorite toys and making sure the right movie is loaded on the iPad.

Consider adding another layer of preparation: writing out what you want to convey to your family. Not that you need to hand your relatives a written list of your child’s needs, but rather that laying out what you want to discuss ahead of time may help you if the conversation eventually becomes heated.

5. Stay positive.

As parents of children with disabilities, we know that disability — like all other diversity — is a wonderful thing. With challenges come wonderful gifts, and with limitations often come beautiful talents.

Being with people who are different from ourselves helps us grow as human beings. When talking to your family about your child’s disabilities, you do not have to disregard the challenges and the needs to celebrate all that makes your child unique. Make sure you tell your relatives why you love your child so much, how awesome her ballet moves are, how being part of the school play made her light up or how her smile can brighten your entire day.

Emphasize all that is wonderful about your child to help your relatives see the person and not the disability. Let your child’s light shine.