What would you ask? What would you answer?

Yesterday, a blogger I like, Love that Max, teamed up with her friend Scary Mommy for a great discourse among their collective readers. Love That Max (LTM) is a blog about raising Max, who has cerebral palsy, and Scary Mommy (SM) is about raising kids. They asked their readers to read each other’s concerns and answer each other’s questions.

LTM asked her readers to post comments telling people what they’d like them to know about raising a special needs kid and to go over to SM and address their questions. The comments range from “Stop staring at us” (many have had very negative experiences) to “Look, we all have challenges. My son’s medical issues don’t trump your potty training woes”.

SM encouraged her readers to read the comments on LTM, and asked them to post questions they’ve always wanted to ask special needs parents but have never had the chance to ask. The questions were great. They ranged from “How can I offer help without feeling like a jerk?” and “Do you join support groups?”

We are lucky in that we have never had a negative experience… in public or otherwise. But Max is not in wheel chair and he doesn’t have scars or any outward appearance that anything is wrong. When people realize he can’t really talk, they sometimes ask. And I tell them all about him. (What? Me talk a lot?) I find that the more I talk, the more information I get. I’ve found fabulous practitioners for him just by talking to strangers.

So, since I have so many friends with special needs kids, typical kids, multiple kids, one kid and no kids, I want to know what you have to say. Please comment with what you’d like other people to know or what you want to know from them.

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8 Responses to What would you ask? What would you answer?

  1. Cyndy Vagle says:

    Social behavior is tough for kids with special needs. So many times my son will push people out of his way, invade personal space, say words that aren’t so nice (Thankfully not the four-letter kind…yet) or even slap or throw things and people who are trying to be understanding say, “It’s OK.” Unfortunately it is not OK. Please understand children with cognitive delays take “It’s OK” literally – that it is okay to push, hit, scream or whatever they have done. Instead I suggest they say things like, “I understand” or “No worries” or “I’m not offended” to the parents. Or even encourage the child with a simple, “Please be careful” if it’s appropriate for the situation. But please refrain from “It’s Ok” – because to me it’s not.

  2. Kelly says:

    My son was born with spina bifida and is unable to walk unaided. He wears leg braces and uses a wheelchair or walker. He wants to be as independent as possible and we support him 100%. I have been criticized many times (by strangers) for not “helping” my son as he wheels himself or pushes his walker from A to B. I wish people asked questions before judging a situation. (His process of learning to walk is similar to a child learning to dress himself. It takes a while to learn and the parent could definitely do it quicker, easier and with a neater end result. However if the child continues to practice they will gain independence, confidence, and the concept of perfecting a skill.)

  3. Lori says:

    This is hard for me. I was raised not to ask, so asking is uncomfortable. Instead of raising my children like I was (don’t stare, don’t ask) I have decided to raise them to treat everyone with dignity regardless of how they look, how they dress, what color they are or what religion they are. To me, this extends to how someone behaves or ambulates in public. I have told them to smile and say hi to people in wheel chairs and walkers, not to ignore them or pretend not to see. If they have questions, to ask. I have tried to teach them to be observant and appropriately responsive, kind and understanding. Having great friends with great children, like Max, make it easier to introduce them to children with special needs. At times, they still find this overwhelming and uncomfortable. Someday, it simply won’t be for them. They will SEE. I have been guilty of the “it’s okay” response (because, frankly, it is the easiest phrase that pops in your mind – we say it all the time to parents with “non” special needs kids when they hit our kids on the playground or shove them in line). I will certainly try to be mindful of that one and pass that gem on to the children. Other than that, I would just ask for patience from the rest of us as we try to learn how to be compassionate without being belittling, smarmy or insincere. I know that I care…..and when I see those very passionate children playing baseball and making it around the bases it brings me to tears every time – they have souls that shine – and you simply cannot help but be changed by these kids. They are not just special needs children to me – they are simply very “special” – something I hope I have taught my children understand and accept.

  4. Meg says:

    probably what I would want to know is how to help… I’m sure it’s different for each kid though. So, how to ask “how can I help,” without sounding like a jerk or condescending… I think if we could model that for all our kids, whether they have special needs or not, we might all be better off. I sometimes feel like I’m not being a good mom (ok, let’s make that often), and I would HATE to ever make someone else feel that way by something I said that sounded insensitive…

  5. Awesome post Michelle; excellent points.

    Here’s my response, from the multiple feral children / special mom perspective : http://delacruz-hopper.blogspot.com/2011/05/disability-etiquette-101.html although admittedly, I wrote mine before yours. 😉

    PS. *profanity warning*

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