While we’re preparing for the BlogHer Special Needs Mini-Con, we’re dipping back and running posts from our archives. This one in particular got a lot of play around the internet when it when live, but recently was brought back into the forefront because a person in the comments. Read those comments. It is true people will always sit in judgment for parents of kids with special needs as well as parents of typical kids. But bullying? Attacking? It seems, well, that sometimes we have to do more than protect our kids; we even have to protect what we think and feel to be our experience.
Recently a thread started on Support for Special Needs about what we wish people didn’t say to us. Given that we’re all different I’m sure not everyone will agree with each mention on this list but many of the items that people wrote in about resonated with other community members. A lot of the items resonated with me.
While we all agree we have the one or few that really bug us, most of us agree that most people who say these things aren’t mean spirited people. They simply don’t understand what they are saying is hurtful, annoying or bothersome. Maybe if we share this post with people in each of our lives, we’ll educate people on what we’d find helpful NOT to say to us…
– God only gives us what we can handle; He must think you two are special parents
– Using the word “Austistics” to describe people on the spectrum.
– Remember, you have to take care of yourself, so you can take care of them.
– He’ll speak when he’s ready to.
– When looking at my son using a reverse walker, “Wow, we need to get one of those for my (typical) 10 mo old so he/she can walk better!”
– They’ll EAT when they’re ready. They’re not going to starve to death.
– You are so much stronger than me… I don’t know how you do it
– Pointing out that my non-walker shouldn’t be in a stroller, not knowing he can’t walk.
– That my child is just playing us.
– They just need discipline.
– You two are amazing for adopting two special-needs children. They are SO LUCKY.”
– Family and friends that downplay a diagnosis.
– For a child that has tics, saying, “Do you think she is doing it for attention?”
– Anything that implies that sensory issues are not real or that we’re playing into their “fear.”
– When people say they are sorry or offer condolences for a child with disabilities.
– Any comment that starts with “If you would just…”
– What’s wrong with her?
– Don’t worry she’ll catch up.
– She’ll grow out of it.
– Is your other son/daughter “normal”? or “Are your other kids ok? (As if to imply the child with the disability is not?)
– You are so much stronger than me and/or I don’t know how you do it.
I thought I would end this with a paragraph about the well-intentioned people and go into something about the people who talk without thinking, obviously, we think to ourselves. But I decided to open up a thread on what we’d like to hear from people. So here is the YES! SAY THIS! Instead list…
– I’ll be over on Saturday to help do laundry/wash dishes/scrub floors!
– I don’t know what to say to you, but I love you.
– How are you doing? (and actually listen to the answer)
– Quote from Elaine Hall: “How Can I Help?”
– Just wanted you to know I was thinking about you.
– I just made an extra dinner when I was cooking for us, can I drop it by now?
– I know you had an appointment yesterday, how did it go?
– Want to drop your kids off with us for an hour or so? (Because people are afraid to take care of my kids, when this happens, it feels like acceptance and support.)
– I’m on my way to the store, want me to grab you some milk or bread?
– Need any help at bedtime with the kids?
– I’m coming over to watch the kids right now for an hour so you can take a nap.
– We’re on our way to take care of the yard work.
– Sounds like you’re doing a great job.
– Here’s some things that worked for us. (preferably from people who “get it.”)
These are just a sampling of what some Support for Special Needs community members preferred…obviously, we’re all different and some on either list may or may not resonate with a particular parent of kids with special needs. Again, for me, I never got mad about kids asking questions or parents helping their child ask a respectful question. I always minded rude adults who encouraged rudeness in their kids. I never minded any of the items on the NOT list from people who cared about me because I knew their intentions were good. As the years go on I am better about saying why something bothers to the person so they understand.
One thing seems to be across the board though; special needs parents would like people to think before they speak, especially in front of their children. We’d like people to see our kids as people, with feelings. I’d like people to know that when they see what they perceive as a negative is not necessarily a negative. A woman once said to me, “She’s just walking? How old is she?” On a strong parenting day, as I like to call them, I excitedly said, “Yes! She’s young! I think it’s absolutely fabulous she’s walking!” Not sure when my daughter would take her first steps we were thrilled she was walking independently by age three.
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