Last Sunday I was interviewed by an NYU graduate student in the award winning actress and performer Anna Deavere Smith’s class, On Engagement. The class covers the various forms in which we engage with one another.
One of the students asked me how I would like to see others engage with me when I am with Emma and also how to engage with Emma.
“Without judgement, for starters,” I answered.
Other people, but especially other parents can be extremely critical when confronted with a nine-year old who has fallen to the ground, screaming as though they were a two-year old having a “meltdown.” Trust me, we aren’t talking about your typical meltdown. I’ve been the mother of a toddler having a meltdown. There is a vast difference between Emma’s upset and a two-year old who has been told they cannot stay at the park for another hour. For one thing Emma is no longer two years old, for another, even a two-year old is not apt to punch themselves in the face or bite themselves so hard you can see a perfect imprint of their teeth on their arm. Many people witnessing such a scene make the assumption the parent has done something horrendous to cause such a display. So there’s blame, added to the guilt the parent may already feel. There’s also something else people do not often speak of and that is contempt. Contempt for the parent and the child. People use nicer words such as impatience or irritation, but both Richard and I have been on the receiving end of those stares, those under-the-breath mutterings or outright shouting at us – “Can’t you keep your kid quiet?” or “Why can’t you control her?” (These are the more polite versions of some of the things people have said to us.) Those comments are full of contempt.
As far as engaging Emma – my wish would be for people to treat her with respect and assume she can understand them. This is tricky because it is easy to think she doesn’t understand, to talk about her as though she weren’t there, to ignore her. I have spoken to others about Emma while she was in the room and now regret it. My oldest brother is amazing when it comes to engaging Emma. He talks to her, asks her questions and even though she will often ignore him, he continues. He doesn’t allow her nonverbal response to deter him. And she adores him. Absolutely adores him. Emma talks about him, asks about him and excitedly anticipates seeing him again.
The last question asked was if I could make up a Utopian world, what would it be. I loved that question.
It would be a world where we greeted one another as we would a favorite family member. A world where we approached each other with love and not preconceived notions of who and what that person was because of the way they looked, sounded, their nationality, race or political views. A place where we embraced our commonalities and not our differences. I know, it all sounds annoyingly pollyannaish and simplistic, even corny, but what if each of us tried, just for one day to do this? What if we tried to put our judgements aside?
For more on Emma’s journey through a childhood of autism, go to: www.Emma’s Hope Book.com
I love your Utopian world. I wish it existed. I avoid going to events sometimes because I just don’t want to have to have Emma deal with the looks, or me at times. Her tantrums are nothing like that of a two year old either. She is eight, and carrying an eight year old out of a store spitting and biting and screaming in a piercing , gut wrenching manner gets many looks. One time Emma lost it in a fabric store. I should have known better because it is overstimulating. She loves textures, but does horrible in overstimulating environments. Anyway, it ended abruptly when I had to take her screaming and kicking out of the store. I held onto her for dear life, wishing I had parked closer, hoping no one would see me. I almost accomplished this endeavor when a woman started approaching me as I was desperately getting Emma to buckle her seat belt. I was sure she was coming over to tell me what a horrible mom I was, how social services should be called on me because it felt so violent as I held onto Emma and I imagined it looked violent as well. But instead, she came over and asked if she could hug me. She told me her son was autistic and has been a participant in much worse tantrums and just wanted me to know I was loved. I felt an angel had been sent to me. What a world of difference it would make if people were less worried about judging others and more concerned about helping others. A smile to a parent that is in need can make such a difference. We are all mothers, or daughters, or fathers, or sons. That is something that binds us all. Why not honor that in our daily encounters and help a struggling parent, not shun her, and refrain from assuming.
This is beautiful. Is it okay for me to quote your story on the blog?
Once, before Em was diagnosed, I was pushing her and her older brother, Nic in their double stroller home. Emma became hysterical and was trying to wriggle out of the stroller, Nic started getting upset and I was tired and hot. It seemed that all three of us were on the verge of a melt down. I stopped the stroller and an elderly woman walked up to me. She said – I can see how much you love your children and I just want to thank you for being such a wonderful mother to them. Then she put her hand on my arm and walked away.
All my anger and upset melted away. I watched her walk down the street and was filled with gratitude toward her for reaching out to me in a moment when I was so close to losing it. I have never forgotten that woman or her kind words. It was over seven years ago now.
I love what you wrote – “What a world of difference it would make if people were less worried about judging others and more concerned about helping others.” Thank you for writing this.
Beautiful stories ladies- and now you have made me cry
Mostly we get the negative reactions too. There are 2 positive ones that happend a while ago that I remember. . Once I was in a Big W ( a variety store) working very hard to distract both my kids and keep them calm. A woman came up to me out of the blue and a said ” I just wanted to tell you what a good job you are doing”
The other time I was Christmas shopping and Roslyn developed a phobia for most stores. I deperately wanted to go into a gift shop to buy a piece of jewelery for a niece. Roslyn was in a stroller (a bit old for it) and crying and refusing to go in despite my bribe a of lollies even. The owners elderly Mum came out and gave her a little bear to play with to distract her while I shopped inside. Two women commented on her being so big for a stroller- however when I explained how she would run amock without it and had autism and was too scared to go in the shop ( she was still crying) they asked how they could help and even helped me get her in the car. If only more people were like that and at least asked if we needed help before making judgements.
All of these stories made me cry too. Isn’t it incredible how we remember these seemingly small acts of kindness? I wonder if those people who had such an impact even remember those moments. Moments that we’ve remembered all these years later. I love what you wrote. I remember an airline stewardess admonished Emma for sucking her thumb when she was nearly five-years old. I can still remember the shame I felt.
Is it all right if I cry too?
Such beautiful stories from each of you…
I think there must be hope in the world after all. Let’s all give thanks on Thursday. I know I will for having such a wonderful daughter/mother/ granddaughter, and now I can give thanks for Kelly and Liz as well.
Yes you can definitely quote. And thank you to all of you as well:)