I’ve often talked about the feeling of isolation, and being alone as a special needs parent. After last week’s post focusing on that, I got asked by a few people
“gee Melanie, it’s all very good to sook and moan about it all the time, but how do we fix this!? What can we do!?”
(*not a direct quote 😂)
Well, after speaking to a few other special needs parents I’ve put together a simple list to help navigate what may be hard for some! These are all based on situations myself or others have experienced, and instead of just saying what not to do, I’ve provided what to do instead! It really couldn’t be easier 😁 and if this gets enough shares, we might not fix the world, but we might make one day at the park better for one special kid, and that’s good enough for me!
Speak over the top of my child as if she can’t hear you. You would be surprised at how often this happens! Just because she can’t talk, doesn’t mean she can’t understand. Don’t exclude a child from the conversation once you realize they can’t talk or even hear.
Speak directly to my child, even though it might seem awkward to you while I wait and give her a chance to answer herself, either using sign, or her device, before speaking for her, trust me we’re used to it! The parent might have to use sign to translate, but still, talk to the child! The conversation might move slower but our kids want to be included and treated the same as everyone else.
‘shush’ your children and drag them away when they show interest in talking to mine or ask questions about her. All this does it teach them to be weary of their special needs peers and adults with disabilities, and it’s not nice for us. Don’t make your children ashamed for asking questions, kids are curious, Let them be curious!
Definitely Have the ‘everyone’s different’ conversation with your kids. A few key points to make would be that some people learn at different rates, point out something that your child took ages to learn, (whistling is a good one!) and explain that some kids take longer to learn how to walk. (for example) or some kids talk with their hands, or need a bit of extra help to play. Remember to use language that is kid friendly, and adjust according to ages and development level. A very important note to talk to kids about is that even though some kids look or act differently, they can still be friends!
and don’t just have the talk once, when you happen to see a person with a disability, have it all the time. Read stories about people in wheelchairs, talk about autistic behaviors, watch movies with differently abled people in them. Let them ask questions, and most importantly, let them play with our kids! Exposure to differences is the biggest way to overcome any fear they may have.
Overreact when a child with special needs accidentally hurts or scares your child. When Ella was 3, she got over excited and grabbed a boy too hard, I was right there to redirect her, but didn’t catch it in time and he got a fright. She wouldn’t have hurt him, He ran to his mum and told her that Ella was naughty and pinched him, she responded with ‘go pinch her back!’ I was gobsmacked!
Be understanding of our kids. Sometimes kids get hurt, accidentally, or because a child with special needs often tries to play with kids much younger. If your child sees you over react, they are going to learn that special needs kids are ‘scary’! Talk to your child, explain that our kids don’t mean to hurt or scare them, that arm flapping or noises aren’t scary, that they don’t mean to get in your space and sometimes we need to be tolerant. I’m sure The parent or carer of the special needs child will be there to help and redirect unwanted behavior.
Judge when you see a child having a meltdown in public. Meltdowns look different for every child, for Ella, they’re very quiet, she sits on the ground, throws anything not stuck down away from her, and self harms (slaps or bites herself)
For others there might be kicking or screaming, and just like every meltdown is different, every solution is different too.
I know if I try to move or talk to her it will only get worse so I just have to wait, hold her hands if she’s really self harming and accept that I might get bitten or hit. For others there might be bribery or redirection or quiet talking. Don’t offer advice like spanking/discipline or tell us that if we don’t give in they won’t throw ‘tantrums’. Chances are we’ve tried everything before. Trust that the parent knows which method works for each time, after all, we’ve been doing it for years. Don’t stare, don’t look from the corner of your eye, don’t get that disapproving look on your face – WE CAN SEE YOU! don’t ‘whisper’ loudly to your friend
“my child would NEVER behave like that in public”
WE CAN HEAR YOU!
Ask how you can help! Don’t say ‘can I help’ because 9 times out of 10 we’re conditioned to say no, even when we’re dying inside. Sometimes having another grown up to talk to is enough of a distraction for us and to them that it’s over much quicker. And it helps us feel not so helpless. If you’re not able to help, even just a small smile of solidarity is enough to make us feel better. A smile is all it takes to say, ‘I see you, I understand, you aren’t alone’
Say anything that starts with ‘at least’ – I know this one seems broad but I’ll try to explain. Every offensive, hurtful thing me and others have been told start with ‘at least’
“at least she’ll never take drugs”
“at least she won’t get knocked up at a young age”
“at least she’ll never talk back”
“at least he can’t run away from you”
“at least she’ll never grow up”
“at least you don’t have to worry about boys”
And yes, these are all real examples
Or anything along those lines, don’t make light of the situation. Most of us would give anything to have those worries or concerns. Other things to steer clear of are
“what’s wrong with her”
“when will he grow out of it”
I find both of these to be extremely rude.
Comment on literally anything other than the disability! Or comment on something you notice their doing well, Without patronizing. It sounds hard but it’s really quite simple, all you need to do, is look past the disability and treat them like a regular kid! Sounds crazy I know! 😄 Treat them and talk to them like real people!
Pity us. This one is pretty self explanatory, no body likes people to feel sorry for them!
Show understanding of us. Tell us we’re doing a good job because I can guarantee we feel like we’re not, Appreciate that we’re doing our best. Understand that of we cancel a coffee date, or can’t make it to a birthday party, or seem flaky, we are trying our best but sometimes it’s just not possible. Basically just cut some slack.
So that’s my list. I don’t claim to speak for all special needs parents and certainly not for people with disabilities, this list is based on my experience and the experiences of those I’ve spoken with.
I think the most important thing to remember is be honest! if you don’t know what to say, say that! If you don’t know what to do, ask! If you want to help, ask how! And no matter what you say, if it’s coming from a place of kindness, and the intent is good, you want to learn/help, then the actual words don’t matter. We just want to be seen and heard.
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