9 May 2018
Seven Ways to Support Parents of Kids with Special Needs – By Interchange Australia Consultant, Anne-Marie Kennedy
“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.
People can 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 to support your friend.
1. Don’t pretend to understand
If you pretend to understand you will come across as insincere. You can listen, but you can’t fully grasp the impact of raising a child with special needs. Try to learn though. Just because you haven’t had 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. Their child isn’t broken; he/she just has needs that are different.
2. Don’t ignore the needs
A parent knows their 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?” Be open to alternate arrangements, such as an individual play date instead of the group party.
3. 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. Open up opportunities for normal conversation. Be fun. Talk about your life (without apologising). Have coffee and chat about other things. Balance is helpful, and providing normal, friendly conversation may give your friend a welcome distraction.
4. 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. Parents of kids with special needs require 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.
5. Don’t talk behind her back
Your friend knows their life is different and sometimes gossip-worthy. Don’t feed that. They need someone on their side, even when you don’t understand. It’s better to be quiet than to fuel the gossip mill. Do talk to them. When you’ve heard something or are wondering about a situation, gently ask them about it. They may not want to talk, but they’ll know that you came to them instead of talking to everyone else.
6. Don’t take it personally if she has to cancel
When you’re dealing with children with special needs, even the best laid 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 their world is intense. Sometimes they may need a break from interacting, a day on which they don’t have to leave the house or put on a happy face. Understanding this and still being their friend will mean so much.
7. Don’t give up
Just like all of us, parents of kids with special needs need people who love them and who will stick around 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.
Interchange Australia has been supporting children and young people with special needs and their carers for over 30 years. We are a registered provider under the National Disability Insurance Scheme (NDIS) and can provide services for NDIS participants. We can also assist people without NDIS funding on a private basis. If you care for a person with a disability or you know someone who does and you think they would benefit from some assistance for their loved one, please contact one of our friendly consultants on 1300 112 334 to discuss how we can best assist. Help is only a phone call away!