Thursday, July 26, 2012

Eh Eh Eh…Use Your Words

(I wrote this in January. Sometimes it takes me a long while before I post something. I don't know why I do this, but I have a lot of posts that I never put up on the blog. Maybe other writers do that. Anyway I finally decided tonight that this should have a place on the blog. It is dedicated to parents of kids with special needs who dread dealing with strangers out in public.)


I don't bristle when people stare at us in public.

We get stared at a lot. People are curious about my Lilli. She draws attention, with her "different" walk, the noises she makes, and sometimes loud crying. (Especially in Target.) I don't enjoy the stares, but I don't tell people off or shoot them dirty looks. I also don't get too bothered by ignorant questions about Lilli's special needs. But I have not had any lately. Josh runs interference for me. It's hard to have a conversation with a stranger when you are chasing a toddler that is grabbing merchandise off every shelf.

I wish people would either ignore us and go about their business, or say something nice to Lilli, such as "What pretty blond hair you have!" Strangers are always telling Chloe that she has beautiful red hair. Strangers don't know what to say to Lilli. Countless times, a well-meaning stranger will say, "Look at all that beautiful red hair!" to Josh, Chloe and me, and then they will glance at Lilli, the only NON red-head, and go silent.


Friends of mine who have kids with special needs get all kinds of rude comments and questions when they are out in public with their children. Usually when we are out in public, someone is yelling, crying or throwing a tantrum. Many times, small talk with strangers just does not happen. We are in our own little world, and any stranger who dares to ask a dumb question might get sucked into the circus to help with one of the kids.
But there is something that makes me stop dead in my tracks, and my temperature begins to rise. It's when someone makes the sound "EH EH EH EH!" at Lilli. I am trying to sort this out mentally. Would I feel the same way if someone made that sound at Chloe or Josh? Mmm, probably not. But I don't hear people make that sound at Chloe. Sometimes people use the "EH EH EH" sound with a baby who is about to grab something they shouldn't. Most of the time I hear people use that sound with animals. I guess that's why it irks me. It happens more often than I care for, to Lilli. It is a teeny thing. I think simply because Lilli's intelligence is finally being revealed, I am sensitive to it.

We have been going to an outpatient clinic for speech, pt, and occupational therapy on and off for about two years. Right now it is just speech and occupational therapy ("OT"). Lilli knows the routine by heart. We always park in the same handicap parking spot. We always walk up the long ramp in the back and hold onto the white metal railing. I push Josh in the stroller (so I don't have to chase him), and Lilli walks next to us. When we get to the building, we push the handicap button and the doors swing open. I push Josh in and Lilli takes off. I let her. We do this every week. I know where she's headed and I will catch up.
She's headed to the fish tank.

She runs clumsily through the long waiting area to the tank (I love that she runs!) and stops dead in her tracks in front of it. I catch up to her and park Josh in the same spot I always do in front of the tank. Josh points at the picture of Thomas the train on the wall and yells "Choo choo!" Every week. Lilli is in temporary heaven as she watches the fish hover near her nose on the other side of the glass. She makes happy sounds and laughs. We count the fish and I talk about what color they are. She usually goes over to the nearest stranger on the loveseat next to the tank and gives them hugs and kisses. Sometimes the person is flattered and hugs her back. Sometimes the person feels awkward and mumbles, "Oh, uh, ok…" while being squeezed by Lilli. I usually say something like, "I guess she thinks you could use a hug," as I try to pull her away. Lilli often puts her hand over people's mouths. I will have to ask her why she does that. She does it when they are not talking. Is she trying to tell them she wants them to say something? Or is it her way of showing affection? Kind of like kissing someone with her hand. Who knows. It is awkward to have your child put their hand over a complete stranger's mouth. We tell her she can't do that. But it's really nothing to sweat over. I smile a lot. Most people are understanding.

Soon the therapist comes out into the lobby to greet us. "Say good bye to the fish, Lilli! Time to go. You can see them again on our way out," I say as I take her hand. She waves at the fish. I am so proud of her.
One morning at therapy, I rave about all the new things Lilli has been doing to her OT. It is right before Lilli's eighth birthday, and she had just begun to type. Lilli does great. When we leave, Lilli runs again to the fish tank. I always let her have a few minutes to say goodbye to the fish. I love how we can come to this clinic and Lilli is so independent. She is really growing up, I think. As we stand there, plans begin to form in my mind. I want to get her a fish tank for her birthday, and type about fish with her.

Soon, it's time to go. I have learned to give Lilli a head's up about that. She does much better when I have her wave goodbye to the fish. Parents wait all over the long, child-friendly room with babies and toddlers. There are three women sitting at a round table right near the tank. Lilli waves to the fish, and heads for the door. She takes off from me, running, but it is ok because I know she knows where we are going. She will stop at the end of the lobby and wait for me to open the first set of doors.

She is about ten feet away from me when one of the ladies at the table belts out:
I pause.
Was she making that sound at my daughter?
I look at her. She is looking at Lilli.

Yes. She was.

I pick up my bag and begin to push Josh in the stroller, following Lilli. "It's ok, she's fine, thank you," I say over my shoulder to the women. But it kind of unnerved me. I reach Lilli, who has stopped and is standing at the end of the room waiting, like she always does.

"Come on, let's put on your coat before we go outside," I say softly to her. "Help me push the button for the doors, ok?" She takes my hand and we walk outside in the chilly morning air. In that moment, I feel the stark difference between belting "EH EH EH" at Lilli and speaking softly in complete sentences to her about putting on her coat.

I try to process what just happened. I feel like someone just popped my balloon. I spent my whole morning speaking in paragraphs to my non-verbal daughter. I guided her with gentle directions and praised her. I made comments to her. I gave her choices. I asked her questions that I knew she would not be able to answer out loud, but I asked them anyway. I hope the thinks about them and answers them in her mind. I reflect on how well she followed my directions and was aware of the entire, familiar routine.

Those ladies did not know that two years ago, Lilli used to collapse in front of that fish tank and wail. She has come so far. She can finally communicate through typing. She can follow some simple directions. This is a tiny area of her life where she is actually learning to be an independent person, because she is comfortable with the routine and she knows what to do. I am thrilled to finally know with certainty that when I talk to her, she really understands. And I think the most important thing to her right now is that I know that she understands and I treat her like an eight year old - not a baby, or a dog even.

When someone yells "EH EH EH EH" at my non-verbal daughter, it bothers me. Maybe everyone does it. Maybe it's the universal sound for "Don't do that!" Maybe I should not waste my time thinking about such trivial things.

But maybe I'm bothered because the sound "EH EH EH" implies that the child (or animal) does not understand words, and you have to resort to unpleasant sounds to get the idea across to them. I brush things off because I know people are ignorant. It is ok. No one can be completely empathetic to every person on the planet. I think that a mom of a child with special needs has to brush these kinds of small things off every single day.

Later that day, I decide to ask Lilli herself if it bothers her. She types yes. I ask her why and she types "Because" and stops. She is not sure how to type the rest. After some prompting, she types "Because very mad." I ask her if she means that she thinks the person who is saying "EH EH EH" to her is mad at her. "Yes," she answers.

The most ironic thing to me personally about all of this is that we tell our children constantly to "Use your words." So why would we use noises to communicate with a child whom we are desperately trying to teach to use words?

I think that the only thing I can do is to teach Lilli to stand up for herself. I will teach her to type, "Please do not make that noise at me. I understand. I am smart. Use your words."

Or maybe she should just type: "EH EH EH! Use your words!"