Recently, we asked families who follow our HOPE Center Facebook page to tell us what they have found helpful and how others could best support them. We weren’t looking for the horror stories! Rather, we wanted to know about the times someone really made a positive difference and showed they cared.
Thanks so much to all our families who took time to respond and share their insights – it’s important that this be told from their perspective! Although those of us who work with these amazing families may feel like we know them well and know what they are going through, we realize it’s not the same as living their lives. I didn’t want to write about all the ways I thought others could be sensitive and kind and thoughtful; I wanted to hear it from the families themselves. And of course not all families are alike. What feels supportive and right to one family may not sit well with another. But in reading the responses I found some similar themes:
- Ask us questions (nicely). Kids with autism or other special needs are kids first and foremost. If you ask questions, you will learn why certain behaviors occur. “Feel free to ask us questions about the diagnosis or about behaviors. I’d rather clear up misconceptions,” wrote one mom. Many times, fear is based out of ignorance and misunderstanding. Taking the time to get to know someone means you will learn about all the things you may have in common, in addition to what makes you different. You may be surprised how similar you are!
- Invite us to everyday functions and activities. “While we might be living in a different way, the way we’re living is actually quite typical for us!” wrote one mom. Knowing that a peer wants you at her birthday party or that you can be part of “regular” kid activities like going to the movies or the skating rink can make all the difference! Families told me that knowing that their child’s peers would include her or him made them feel great, and it also set a wonderful example for all the kids – it’s okay to be friends with someone who acts a little (or maybe a lot!) differently than you do. As another family said, “Invite us over, invite us out, and let us figure out how to make it work. Don’t stop calling!”
- Show us a small kindness. Public places can be tough for families of kids with special needs. Several families told me how a seemingly small thing really made their day in the midst of a rough time in public. A store employee brought one mom a bunch of flowers to the register and said they were “on him”. Another time, a mom was cutting up her son’s food and helping him to eat while trying to eat her own meal. Someone anonymously paid for their meal and sent a message saying to “hang in there, I was doing a great job”. Kindness doesn’t have to cost anything! Offering a smile or holding a door, maybe just letting a frazzled parent handle their child without getting involved or making them feel judged. One mom said she’d prefer people “just walk past us when my son is having a tantrum.”
- Lend a listening ear, but hold back on giving us advice or judgment. This was a big one – lots of families expressed how they need and want to talk, but don’t necessarily need you to “fix” or “suggest” anything. Just listening is sometimes the kindest, most caring thing you can do. If parents want your specific advice, they will ask for it!
— Lori Warner, Ph.D., LP, BCBA-D, Director, HOPE Center at Beaumont