Tuesday, August 31, 2010

So-- What do we say?

As I mentioned before one of the hardest things about day to day life with Ethan, are the stares and quick glances that we get when we are out in public.

My first experience with this, was just after we brought Ethan home.  I mean it, he looked really healthy and normal! Well, except that he was hooked up to three or four machines at a time.

My first trip to the grocery store seemed innocent enough.  I need a few things and the other kids were occupied.  So I packed up Ethan and his oxygen machine, his feeding pump and tubing and his oximeter and headed out into completely uncharted territory.  I made it to the store, filled the cart full of Ethan's equipment and rushed in. Determined I could do it.

I was in the frozen food isle, looking for ice cream or some other dangerously caloric product, when I noticed this young girl peeking around her mothers skirts. .She kept looking at Ethan with awe in her eyes.  She finally scampered over and much to her Mother's chagrin, she asked very reverently, "Does your baby plug in?"

I laughed and giggled and said, "Why yes he does!"  Her mother was horrified and apologized and whisked her away.  I told her not to fret, that asking was just fine, but the Mom didn't agree and off they went.

That seemed very cute to me.  Now days, taking Ethan into a store it feels like everyone gawks and stares.  A few people will you look you in the eye and smile.  These people seem to have some experience.  They know someone, or have spend time with kids (who will someday be adults) like Ethan.  Other folks completely avoid you.  Kids are always curious and they usually stare.  Sometimes their parents will say something. Most of the time they whisk them away.

 So what do you do? What do we say? How do we address the elephant in the room?  I can't speak for every Mom in my situation.  For me, I usually take the lead.  If a child in the store is staring, I will look them in the eye, smile and say Hello.  If then the parent hauls them off, that is the end of it. Often, I am left feeling really dumb, angry or speechless. (Hard to imagine, that)  When this happens, it is heartbreaking.  It hurts and I feel like an actual elephant, standing there.  It has brought tears to my eyes on more than one occasion.  Not that we all don't know I am a total wimp already.

I would suggest to all those wondering minds who are sitting on the edge of their seats waiting to hear what I have to say, that addressing the subject is always the best idea.

Say, "Tabatha my daughter is curious about your son, can she say hello?"  or, "We love your wheelchair", and then lean over to your child and say, "Some kids can not walk, so they have wheels."  I promise you, the mother in question will take it from there.  She will introduce her child and be grateful for the interaction.

For children with less noticeable disabilities, a child who is 12 but is crying in the isle at  the pharmacy with Mom, or a three year old who sits in the back of the cart with his head down, lightly banging it against the metal.  The same rule applies.  Look the parent in the eye, smile and say "We've had days like that too." or even just say "hello".  Don't just glance at them and walk away, or avoid making eye contact. Don't judge them.  Not the child or the parent.  When my older boys were little, I often heard, "If she would just discipline them." or my personal favorite, "If she would just medicate them"  Comments like these are so hard to bear. I wanted to scream, "I am trying!", "I am doing the best I can", or "If you think you can do better, you take them!"

I think it is the best to assume that parents are doing the best job they know how to do.  It is more than likely that we have no idea what goes on behind their doors.  Struggles with children who have social / emotional behavior issues are dang tough!!!  I sometimes think that I have it easy.  Ethan's disabilities are visible, easy to see.

Lets talk about language a little.  We've discussed use of the word retard.  We've talked about people first language which is my favorite.  Handicapped is the verbiage that is being used professionally.  "Handicapped parking" or in the Utah drivers handbook it uses that word.  Personally I have no issues with it.  Though, much like the word retard it has gained that connotation that is used flippantly and with out thought or care.  Special needs, is what the public school systems at least in Utah use.  I like Governor Huntsman's signs he had put up around the state that said, don't DIS- Ability signs.  Some folks use "Differently Abled"

We parents have such power to teach our children.  Love,compassion and understanding are taught at a parents knee.  I would encourage anyone to step outside of their comfort zone a little and be brave and bold. Ask questions, nod and smile. Say hello.  It's a very small world.  It's also a very good place to be.

Once again, I thank you for joining me on this walk.  I would encourage any comments or questions. This subject is totally open for discussion.  If you have a question, please ask.  Other Mom's who have children with any type of disability. Speak up. Lets hear from you.  How do you feel, what language do you prefer?

"The moment one gives close attention to anything, even a blade of grass, it becomes a mysterious, awesome, indescribably magnificent world in itself-- "Henry Miller


  1. I'm enjoying these post Lisa, thanks! I have a question for ya; but first a little background. I was at Disneyland and was waiting for my party to join me when I saw a family, mom, dad, 2 boys about 14 & 16. They were sitting at the table next to mine and I heard the mom trying to coax the 14 yr. old into trying the little fried donut covered in powdered sugar. He was hesitant and vocal, but she persisted with a low calm voice and eventually he was covered in sugar gulping down one after the other. His big brother was also eating, but had to stand up and hum at each bite. It was when mom went to grab more napkins that I noticed her tee shirt: "If you think my hands are full, you should see my heart." Which lead my eye to dad's which had a puzzle piece and "I love my autistic kid." Both boys had tees, one about patience, the other stating he was an alien to this planet.

    For me it was a good thing to see such positive vibes, and heck, finally getting that kid to eat a fried donut! Who doesn't want that? They were a bit louder and yup, standing and humming at each bit is not the average, however the tee shirt let everyone there understand that these guys were fine, mom was fine, dad was knee deep in powdered sugar fine, and who the heck cared?

    What are your thoughts on explanatory tee shirts? I think it helped everyone involved, but then again, would I want to wear a shirt every time I went out with my kids? I don't know.

  2. I'm Becca's Aunt, and I just came to see how much you love your wheelchair bag, and then kept reading. I remember walking with my sister in a mall when we didn't happen to have Becca with us, and she kept saying to me, "This is SO WEIRD. I'm used to being stared at. No one is looking at me, and it's weird." And then she taught me what she LIKES in public interactions, and I have always tried to follow it. Making eye contact, asking the child's name, talking to the child, asking before touching the child in case seizures are an issue. I complimented one mother in a store the other day who had three children, a brand-new baby and a wheelchair in tow. It could have been you, for all I know. I think the boy in the wheelchair was named Ethan. Here's my ultimate question: Is it only people with special needs children in their family that are able to make eye contact, etc.? If that's the case, I feel even more honored to have my Becca to teach me these things. PS-we have a two-generation tradition in our family of women who married someone with the same name as their youngest brother, so I'm all for Ethan being my future nephew! :)

  3. PC-- Thank you for sharing your experience with us, and asking the questions about t-shirts.

    To be honest, I am not sure. I've never worn on. It's a great thought though, and I like that you noticed, put the pieces together though.

    Ethan has a shirt that says hello in sign language graphics, with HELLO written under it. He's worn that a lot.

    Hunsaker Momma. Seriously, Diana is amazing and I just love her to death!

    I think it i especially important for all people to make eye contact-- I do realize that it is hard to do. I had a facebook comment from someone who thought this entry (note) was condescending. I really did not mean it to sound like that.

    Becca and Ethan remind me so much of each other. They are both adorable! That sounds like a great!! G R E A T tradition! HA!