Message from the Outside Part Two

My last post invited you to participate in a conversation about reactions to special needs: what people on the outside thought about special needs kids and what parents on the inside wanted people to know.

Thank you, everyone, who left comments.  I love that you are willing to speak up and share your thoughts.  Keeping the communication and the connection open is important.

If you read no other comments (and I hope you read them all), you have to read at least these two:

Alison, over at Living a Life of Bliss, encourages us to ask questions.  She wrote:

My son, also Jack, is 4 and walks with a walker. People stare and usually try to show they are “okay with him” by commenting on how well he uses his walker. When they finally ask what’s wrong with him and I say he has Cerebral Palsy, they always seem shocked and say, “oh but he seems so smart.” There are many kinds of CP, a few are typically coupled with metal retardation, so most people don’t understand. To top it off, he’s adopted. We get lots of questions and many times people act sorry for me or him or both of us. I use to get annoyed by that but now I know my job is to make sure he’s okay with himself and that I’m leading him to stand up for himself. The worst comment people will make to their own kids is to not stare at him. Kids are curious and his walker looks like fun (our 3 year old daughter is so jealous!). When you tell your kid not to stare, it’s just like saying ignore him, ignore another human being because he’s different. I don’t like that. Tell your kid to ask what it is and what it does, it’s not like Jack doesn’t notice he has a walker!!
See, outside the special needs world, we think we are being respectful by not wanting our kids to stare rudely.  But is the message they’re getting that they should AVOID children with special needs?  Or that special needs kids are embarrassing?  Alison tells us that we’d rather have an open dialogue with each other, even in public, especially in public.

Then, there’s my friend Betsy.  She’s a mom of two typical boys.  They dye their hair for St. Patrick’s Day.  They have army battles on the kitchen table.  They love to hike.  Betsy wrote:

Last week I got my first opportunity to write a news story about preschool-aged kids with developmental delay and/or on the autism spectrum. I got to observe kids, talk to a parent in detail about her experience, interview and describe the actions of teachers, etc. So many opportunities to put my foot in my mouth or simply fail to ‘get it.’


I found myself feeling so grateful to you and to this blog, because I felt clued in to how parents might feel — and thus less worried about saying something extra-stupid to the parents and teachers who know these kids so well.


Knowing Jack, I know it is easy for people who meet him to see his strengths — he’s adorable, he’s smart, he talks about things he likes, doors and door knobs being one subset I remember — and I know you also are very skilled at helping people who don’t know him to interact with him, because you know him so well. But not every special needs child and parent are as easy to interact with.

I would ask parents of special needs kids to give adults who aren’t clued in at least one opportunity to ask a stupid question or make a stupid comment — and to get a reaction from you that educates us rather than spurns us. Let us know how we misread your feelings (no, I don’t wish I had another child — I love this child just as he is) or failed to “get it” about why your child is behaving as he is or how we or our children might better interact with him.Then, if we say another stupid, hurtful or thick-headed thing, go ahead and return the favor — and protect you and your child from our cluelessness.
Also: Please be open to the possibility that we actually do like your child and the way he behaves, even if it’s not typical, and that we can truly believe that your life has been enriched raising a special kiddo and that if we’re staring, it may be because your child is adorable, we admire the way the two of you interact, we can relate because of other special kids in our lives and you’ve drawn our eye — not just because of those cute shoes.
Whoa.  Betsy, I am in love with you.  Forever. 

And I’ve been a nitwit.  I’ve been just as judgmental on the special needs side as I thought some people on the other side were.  I never imagined such a beautiful openness to our kids.   Thank you for showing me that my heart can stretch bigger still.

And thank you all for speaking up.  We have so much to learn from each other and so much support to give each other.  Let’s keep talking, okay?

Photo Credit: http://jpsinteractive.org/blog/sarah-simkin/teaching-kids-write-grants-or-plant-trees

Read original post

Brenda Rothman

Brenda Rothman is a writer, speaker, and consultant who advises parents and professionals about the power of relationship. After leaving law, Brenda devoted her energy to the relationship with her son, diagnosed with autism. Her essays are at mamabegood.blogspot.com, The Huffington Post, The Thinking Person's Guide to Autism, Mamapedia, and PLoS. She has been interviewed by The Atlanta Journal-Constitution, Atlanta Parent magazine, and BlogHer. - See more at: http://mamabegood.blogspot.com