Today a guest post from my friend Alissa. Part of this experience with Ronan has taught me how badly we need new narratives about parenting: what it means, what it is, how it feels, how it looks. Alissa offers such a narrative, and a passionate one.
I met Alissa when I was 15. I remember, vividly, that I believed her to be the
most beautiful woman I’d ever seen, and I seriously coveted her hair. Not only that, but she was so cool: she drove a rat trap but sassy-looking car, shopped at thrift stores, wore men’s clothes and the best hats and lots of layered vintage crosses and chains and baubles. She was from South Dakota. Nobody could spell or even pronounce her name. In theater she was brave on stage, the way I longed to be. I idolized her, quickly attempted to dress like her, and even more quickly grew to love her. We spent a lot of time going through the Amigo’s drive-thru and driving around singing to the 10,000 Maniacs between mouthfuls of burrito. We acted together in a series of high school plays. We went to dances, school functions, and weird parties in cornfields. We drank rum and coke in her basement room and practiced our lines for the spring one-acts.
Just wait ten more seconds. Your questions, your understanding, your LIFE can change in that quick snap of time.
Alissa has a story about parenting that is important but often lost in the shuffle. I’m glad it’s getting air-time here.
And I still completely covet her hair.
Just wait ten more seconds.
That is my main piece of advice to nosy people who ask stupid questions of
parents with children who are “different.”
As a divorced mom of five, with three of the kids having significant special
needs, and two of them adopted through the foster system, I am often asked
ridiculous things when I am out in public. “What’s wrong with him?” “Why does he have a tube coming out of him?” “What happened to her head?” “Why is she acting so strangely?” “Can’t you keep him quiet?” “Which ones are your real kids?” For anyone facing the challenges of an atypical parenting journey, these are not only annoying and offensive, but an infuriating waste of time. Goals are different for us. I am not hoping for Harvard, I am praying for survival and avoiding prison. Let’s just get through the day.
I have decided that in most situations like my own, if anyone would observe the scenario for 10 more seconds, this societal verbal vomit wouldn’t happen. Most of the time when one looks at any situation, if it were studied a little more with the heart instead of just an empty head, then the answers to moronic questions would be answered and someone’s already agonizing day wouldn’t be made worse.
I remember once when I was shopping at Target there was a teenaged mentally challenged girl having some sort of meltdown in an aisle on the floor. There was a woman next to her, I assumed her to be the mom, who looked distraught and overwhelmed. Many people were pointing and staring and making rude comments, and in that moment, I realized that that mother was just like me. I stopped to offer my help and support. I just gently reached for her shoulder and said that I understood. She started to cry. I think it was the first time that someone didn’t judge her and her parenting. I just was another mom who got her, just another mom on a crooked, prickly, unexpected path of parenting.
Everyone needs to feel empowered to speak their truth and have a voice in this world. That is also one of the reasons that I became a Court Appointed Special Advocate 10 years ago, because like 2 of my kids, there are far too many abused and neglected kids in desperate need in the foster system. They need someone to help be their voice when they are too little or too damaged, or too vulnerable to speak for themselves. These kids get asked dumb, insensitive crap all the time and they need to be reminded that they are precious and beautiful and good, and most of all, worth loving.
Another time I was with my kids and another family who had adopted a little boy with many diagnoses and special needs on a trip to Walt Disney World. (Now I do have to add that WDW knows how to treat these families right!) Between the two families at the time, we had 4 kids with probably 30 diagnoses between them. This little boy, Michael, had spent 2 years in his birth home with a mentally handicapped and mentally ill drug user and was given bottles of Mountain Dew instead of formula and left in a small room to eat his own feces. He then went to a foster home for 2 years where his basic physical needs were met, but he received no nurturing or love. When my friends finally got him, they wanted him to have this vacation that he not only deserved, but frankly earned. He was so excited. Although primarily nonverbal, he squealed and flapped in delight in his special stroller as his leg braces clicked and clattered with every flap.
In WDW they let people in special mobility devices in the buses first which
meant that Michael got to cut in line. One night a woman in her mid-forties
started yelling and complaining that they had waited to get on a bus back to the hotel for 15 minutes and now this kid in a stroller who looked like nothing was wrong with him got to cut in line. I was horrified. She happened to make it onto the same bus as us and so, when the gentleman next to me asked what was going on, I shared Michael’s story. I knew that woman could hear what I was saying and I was hoping to at least plant a little seed of awareness in her feeble, pathetic mind. As I helped Michael off the bus in his special chair, shockingly that woman got off the bus and approached me. This is a moment I will never forget. She said that she was so very sorry and that we all should be enjoying the “Happiest Place on Earth” and that she will never again open her mouth like that because she realized that you have no idea what someone else’s journey has been and what may be painful and agonizing in their lives. I cried. She hugged me. I was sorry for the mean things I thought about her in my mind. But I was hopeful. She could plant that little seed of understanding somewhere else.
I have thought a lot about situations like these. Times when I have had to pass out cards that explain my kids’ diagnoses and websites to visit for more
information, rather than explaining again, and again, and again that my
daughter’s birth mother used meth and was so drunk that she fell down a flight of stairs and my daughter was born more than 3 months premature with a severe brain bleed and cerebral palsyand her behavioral issues are out of her control, and on and on and on…. or that my son is Autistic and couldn’t handle the noise in the mall or that he can’t tell what is real and what is pretend…. or simply just to avoid breaking out into hysterical tears in public.
None of us should have to do this. When I think of my dear, powerful Dragon Mama friend Emily and her family and their walk through sheer, torturous Hell as she navigates her way through letting go of her sweet Ronan, and then imagine her having to deal with an idiot in the grocery store who asks her something ignorant and hurtful, it makes me want to give up Pacifism and punch them all in the face, or as my oldest daughter suggested, shoot them in the foot.
I just ask that we stop judging each other and being so insensitive. Evaluate
and edit what you might say by observing first. Then speak with kindness and compassion and tread lightly. Assume that everyone has a past they could write a book about. Assume that everyone has had their heart broken or soon will. Assume that everyone might be just like you.
Just wait 10 more seconds.