Despite all efforts to the contrary from both sides, there seems to be some sort of figurative invisible force field between special needs parents and parents of “typical” children. The differences between our experiences raising our children can sometimes have an unfortunate polarising effect on us when we come in contact with each other. Sounds a little like I’m talking about a person attempting to negotiate their way around a dangerous animal or a leper? Well at times, this divide between us can feel that way.
There have been so many negative stories out there about what not to say to the parents of children with special needs, and while I feel as though (in many cases) they are diligent attempts to avoid awkward encounters, they often lead to a full-on avoidance of encounters, since people don’t want to say or do something that may be deemed hurtful or offensive to those of us raising children who are something other than typical.
Here’s a shocking secret: We are just like you. Except we’re different.
When we go to the grocery store, or to Starbucks, or to a restaurant, the doctor’s office, the playground, Target — you name it — it’s often guaranteed that our children are going to cause a scene, have a meltdown or perform some other behaviour that is outside the lines of what the public would consider to be “acceptable”. Likely, it’s something that we would consider unacceptable too, but unfortunately, children need to be seen by their paediatricians and dentists, refrigerators need to be restocked, coffee (desperately) needs to be gulped and children need to burn off energy running around at the park, swinging on the swings and climbing the monkey bars.
So here are some things you should say to a special needs parent if you see us out and about (and possibly struggling with our difficult child):
1. Can I help?
Yes, we realise that there are about a hundred things you need to be doing too, but if you see us attempting to wrangle our child mid-meltdown in the parking lot as our grocery cart slowly rolls backwards away from our car and into the middle of the road, please feel free to bring our cart back for us, or distract our other child who may (occasionally) feel as overwhelmed in the fray as we do. We’re not asking you to unload our groceries or strap our kids into their car seats, but even those 10-20 seconds of your time can change our whole day around.
2. I’ve been there too!
Chances are, you have. If you see our child yelling out random words for no particular reason in the lighting aisle at Target, it certainly may seem strange to you; it may even annoy you. That being said, it is very likely that you have been flustered and even embarrassed by your own child screaming and carrying on in Target after you informed them that they wouldn’t be getting the toy they wanted. Sometimes, letting us know that it’s not only us that this happens to can be very calming — and it’s certainly appreciated.
3. What’s your name?
If I have another one of my children with me and I am attempting to get their sibling with special needs to calm down, it would be extremely helpful if you attempted to distract my other child with questions about how old she is, or what sports he plays at school, or what her favourite TV show or board game is. We all do our best, but there are some times when those other children need to wait for us to deal with their siblings; it would help to assuage our guilt and improve their self-confidence if someone showed them a moment or two of attention in those instances.
4. Say nothing.
Sometimes, when we are overwhelmed, overtired and just “over it”, a kind glance in our direction with that knowing head tilt that says “Hang in there, fellow Mother Warrior!” can do wonders to perk us up. This is especially true considering all of the disapproving looks and unwelcome commentary we often get from strangers. If I had a nickel for every time someone made a comment about how in their day children were better behaved, or every time I’ve overheard parents loudly telling their children how proud they were of them for not acting the way my son is, well, I’d have a lot of nickels.
Before I had my son, I will freely admit that I had absolutely no idea how to act around people who had children with special needs. Now that I am one of them, I know how it feels — something like a cross between being in solitary confinement and being on display as the Bearded Lady at the circus sideshow with your child figuratively yelling “Step right up!” to passersby. It can be isolating and overwhelming, even in public places — sometimes especially in public places. But it doesn’t have to be this way. A small act of kindness or kind word from a stranger, from someone who is able to put themselves in our shoes — even if only for that moment — can make all the difference in our day, and in building a bridge between your parenting experience and mine.
Jamie Krug is a writer, wife, and stay-at-home-mom with a full-time job as the CMO (Chief Medical Officer) of her family. Her blog,www.OurStrokeOfLuck.net, tells the story of her family’s day-to-day struggles and triumphs in the wake of the devastating and still largely misunderstood rare diagnosis her son received at birth. She prides (embarrasses?) herself by stating out loud what other mothers may feel but wouldn’t dare say… You can follow Jamie on Twitter @OurStrokeOfLuck, on Instagram @jamiekrug, or on her Facebook Page for Our Stroke Of Luck.
This articles was originally published on The Huffington Post and has been republished with full permission. You can view the original here.
Do you have any advice to add? Or do you have examples of things NOT to say?