“I don’t know how you do it.”
It’s innocent enough, but it’s said so often to parents of children with special needs that it’s like white noise. The typical response is a shrug, brushing it off and moving on. Parenting a child with special needs is not a spectator sport, but all too often it feels that way.
Sometimes those parents want to shake their heads and respond, “I don’t know either.” Other times the response is more resolved: “You just do.” Regardless of the answer, parenting a child with special needs can feel lonely.
My parents adopted five kids, all with special needs. I’ve watched people drift away because they don’t know how to continue to be a friend in this unfamiliar territory. Often when people are not sure what to do, they don’t do anything, which only widens the gap, even if we want to continue to share a connection.
It can be tough for people who are not in that position to know what to say or do to help parents of kids with special needs. Here are seven things to avoid and seven things you can do instead.
Don’t pretend to understand. You really can’t fake this. You can listen, but you can’t fully grasp the impact of raising a child with special needs. Do learn. Just because you don’t know the exact experience doesn’t mean you can’t educate yourself. Ask your friend for a resource or two so you can better understand her child’s challenges and gifts. Her child isn’t broken; he just has needs that look different.
Don’t ignore the needs. Your friend knows her child is different. Ignoring that will just put a wall between you. Do talk about it, gently. Be sensitive and understanding. Ask questions. Being honest helps. If you want to invite the child to a birthday party but aren’t sure about his needs, say that. “Hey, Joe would really love for Chris to come celebrate his birthday. We will be at an arcade. Will that work for Chris? Is there anything I should know or would you like to stay?” And be open to alternate arrangements, such as an individual play date instead of the group party.
Don’t talk about the special needs all the time. Raising a child with special needs can be intense, and parents who spend a lot of time talking about their child’s needs with doctors, specialists, therapists and school personnel may want a break from that. Do provide normal conversation. Be fun. Talk about your life (without apologizing). Have coffee and chat about other things. Balance is helpful, and providing normal, friendly conversation may give your friend a welcome distraction.
Don’t run away. When people don’t know how to handle a situation, they are inclined to disappear. Don’t be the friend who leaves. Special needs parents need help. And although the relationship may look different, they want you to stick around. Even a quick text or a note in the mail can mean a lot. Do be present. When your friend has time, make yourself available. We’re all busy. Add in multiple school meetings and phone calls, various therapies, doctor’s appointments and increased hands-on time with the child, and that’s a whole new level of busy. This is what your friend deals with regularly. Carving out time for her in your schedule will mean a lot.
Don’t talk behind her back. Your friend knows her life is different and sometimes gossip-worthy. Don’t feed that. She needs someone on her side, even when you don’t understand. It’s better to be quiet than to fuel the gossip mill. Do talk to her. When you’ve heard something or are wondering about a situation, gently ask her about it. She may not want to talk, but she’ll know that you came to her instead of talking to everyone else.
Don’t take it personally if she has to cancel. When you’re dealing with special needs, even the best plans can change in an instant. A meltdown over socks or an ill-timed nap could change your friend’s whole day. Do understand that her world is intense. Sometimes she may need a break from interacting, a day on which she doesn’t have to leave the house or put on a happy face. Understanding this and still being her friend will mean so much.
Don’t give up. Just like all of us, parents of kids with special needs need people who love them and who will stay even when it’s complicated. They need to know that they’re human, and that they matter. Don’t be that person who checks out. Do be that friend. The one she can come to for a laugh or to vent about a diagnosis. The friend who acts normal even though her life is anything but normal. The friend who shows up and stays and asks hard questions out of love. You don’t need to fix anything. You just need to be there.
Rebecca Hastings is a freelance writer and former teacher who lives in Connecticut. Find her online at myinkdance.com.