Be wary of offering ‘help,’ and other ways to support families with disabilities

By Jaclyn Greenberg, CNN

(CNN) — When my son was born sick, and eventually diagnosed with severe disabilities, friends helped in a variety of ways. One friend texted several times a day to let me know she was thinking of us without expecting a response in return. Another friend let me vent over the phone where I repeated and tried to understand constantly changing news I received from doctors.

Today, the best support a friend can give me is through inclusion. Finding little ways to help my son play a sport, make a craft or even get into someone’s house for a party allows him and the rest of my family to all be included equally.

After more than a decade of parenting a child with severe cerebral palsy and other challenges, I’ve figured out how my friends can support me and what they should avoid. I use this same strategy when I learn that a friend’s child has received a new disability diagnosis. Here’s what to keep in mind, knowing that your friends might need something different than I did.

Listen to your friend

When my son was younger, we managed a lot of doctor and therapy appointments. Back then, having a friend listen and hear my frustrations as I navigated his medical care helped me so much. Someone sending a quick text to say hello or to see how an appointment went or sending an invite to take me out for coffee (even if I couldn’t always go) were great ways to offer support and stay connected when I was managing a lot.

Once you ask a question, listen to whatever they say. Let your friends guide the beginning of the conversation. They may be dealing with challenges or triumphs that aren’t obvious. You’ll also get a sense of how much they want to share.

Today, our calendar is (usually) quieter. We just want to get out and have fun. I don’t need to share our day-to-day the same way I used to. Getting a sense of where your friend and her family are at is a good start.

Be wary of offering ‘help’

It’s human nature to want to help people managing difficult situations, but know you don’t know everything they’re going through. Before you offer suggestions, know your friends will quickly become experts through lived experiences, and it’s important to respect that they may already have their team in place.

If you really think you have a resource that can be useful, use gentle language: “I don’t want to overstep. I know an amazing pediatric physical therapist if you want their number.” Or “My friend has a son who seems to have a similar disability. Do you want me to connect the two of you?” And if they say no, accept their boundary.

Do not make these statements

Don’t offer dramatic statements that suggest you couldn’t do what they are doing. Saying “I can’t even imagine what you’re going through” or “I could never do what you do” can make your friend feel worse, and they likely aren’t true. If you were a parent and had a child who needed more support, you would do everything you could to help them, right? We’re all taking life one day at a time and doing our best.

Pay attention to proper terminology

I don’t expect friends to know the appropriate phrases to describe my son’s needs. There was a learning curve for me, too. But I don’t like it when they make assumptions and use terminology that may be outdated instead of asking.

Some people don’t like the phrase “special needs” (all needs are human needs, not special). According to Emily Ladau, author of “Demystifying Disability: What to Know, What to Say, and How to Be an Ally,” the terms “disabled” and “person with a disability” are preferred. On the flip side, terms such as “neurotypical” and “nondisabled” are appropriate, but “normal” or “regular” can be offensive. Do a little research, but don’t be afraid to politely ask.

When offering to help, be specific

Don’t be vague with your offers to help or expect others to tell you what they need. If your friend is busy with extra appointments, offer to grab her a coffee or drop off a gift card so dinner is covered. If you know that accessibility is a challenge and you are going to a show or a restaurant together, offer to call ahead and request accessible seating, or to arrive first and make sure there is an easy path to the table.

Be inclusive

Every child is first and foremost a child who wants to play and learn and grow. Find out what accommodations you can make that will make everyone comfortable. Notice when a hiking trail, amusement park, movie theater or other venue is accessible (and when it isn’t) so you can get out together without any fuss. (Having these resources will be helpful if you ever get injured or have another friend or relative with mobility issues.)

Finding common ground, like a modified game, lets everyone feel included and can educate others who are unfamiliar with a disability. By bridging that gap, you not only help the child, but you help parents relax and have some space to enjoy themselves.

If you have young children, read them books about people with disabilities — and read them yourself. Have conversations at home before your children meet someone with a disability. Educated children grow into adults who make the world more accessible and inclusive for all.

Jaclyn Greenberg writes about parenting, accessibility and inclusion. She has written for The New York Times, Wired, Parents, Good Housekeeping and other outlets.

The-CNN-Wire
™ & © 2023 Cable News Network, Inc., a Warner Bros. Discovery Company. All rights reserved.