Monday, February 3, 2014

"I get uncomfortable when I see people in public with handicaps"

Last week I received this very thoughtful question in my inbox:

"I get uncomfortable too when I see people in public with handicaps. I don't understand it, and it is making me crazy. I see them and I want to be open and loving like I am to everyone else, but I feel like how can I understand what they are saying etc...and I feel like the parents can see through my efforts to connect, and I get flustered. Can you help me understand how to connect? I so desperately want to change this. What's the best way to approach?"

I don't consider myself an expert on this subject, but as someone who has completely changed on this subject in the past 5 years, I do have some thoughts.

My freshman year of college, rather proud of my Music Education student status, I remember the first time I met one of my roommates. She was gorgeous. Really fun curly hair, beautiful features, and super sweet- I immediately adored her. When she told me her major was Special Education, I was floored. Why? Why would someone as pretty as her want to work with people who were so...different? I couldn't picture why she would care enough to get a degree in it. What did she see in this field?

Every time I encountered someone out and out with noticeable special needs or handicaps, I was immediately uncomfortable. Most of the time I couldn't understand what they were saying, they seemed to have little to no respect of my personal space, and I just didn't know how to connect. 

Little did I know that soon I would be the mother of such a special needs child.

When she was still a baby- this uncomfortable feeling intensified. Not only did I not know how to respond or act around "them", but now I pictured their lives as my daughter's future, and I just wanted to sob at the thought of her being a Walmart greeter one day- or the bagger at the grocery store that is so slow that everyone tried to get into a different line.

To me- a highly driven type A person- I didn't "get" these people. I lumped them all into one category, threw a "they" and "them" on it, and avoided at all costs with a quick look of pity whenever I was forced to look.

But somewhere along the line, my perspective has shifted. I don't even know exactly when it happened. I attribute it to things that Addison has taught me: empathy. compassion. the value of a life.

I stopped looking at the differences, and started seeing what was the same. I started putting myself in the shoes of the mother. I stopped seeing problems, and started seeing worth. Just because I was an apple and didn't understand oranges didn't mean that there wasn't something important and extremely valuable about oranges too.

I thought about a mother who desperately prayed that he would survive surgery. I thought about the joy of first smiles- the exhilaration of first steps when they were worked SO HARD for- crutches and leg braces the glorious aids that helped him get there. I thought about the long hours of therapy that were patiently planned and executed. I thought about the achievements that might seem so small to an outsider but so huge to the family that cheered the years of work to get there. I thought about the sobs at the painful thought of losing him to sickness. I thought about a family that wasn't complete without him. I thought about a mother who has dedicated her entirely of motherhood to caring for him. I thought about his personality- how he might get goofy when he's feeling particularly silly or moody when he's upset. I thought about the joy he gets from being a Walmart greeter. I thought about the sense of accomplishment he gets from bagging those groceries. I thought about those mumbled words taking years to be added to his vocabulary- and the huge celebration that was had when he first started saying them.

I now envy my college roommate. I so wish that I had a degree in special ed. What an amazing field to study, and I wish it hadn't taken me so long to realize it.

Today while doing some early morning walking in the mall with the boys, we passed a gentleman in a wheelchair. His head was tilted back with his mouth open. His limbs rested heavily on his chair as if they could not be moved. He moaned loudly, stopping only to take breaths. In times past, that is all I would have noticed as I scurried by. But today? I saw a beautifully handmade bib catching his drool. I saw a lap blanket that was obviously made with love and care by the older woman walking next to his chair who was asking him questions and content with only his moans for replies. I smiled broadly as I walked by- wishing that we had time to stop and and get to know this duo surrounded by so much love.

Last fall, I met a young lady who was also confined to a chair/bed. Her only way to communicate was to squeeze a device that indicated her yes/no. The mother told me that she has been changing her daughter's diapers for 29 years. But then in her next breath she started smiling as she told me a funny thing that her daughter did in the middle of the night the last week. Small things. Small achievements. That were huge to them. The love shining through that mother's eyes made spending time with her daughter a privilege and joy even though I wasn't sure exactly what to say or how to communicate with her.

I guess the biggest reason my uncomfortableness has fled, is because if I see an individual with special needs with a parent/caregiver- I recognize the look in their eyes. The look of "this is hard and yet amazing". The look of "I know my child is different but please look beyond that because there is so much there." I immediately feel a connection because we have something in common even though our specific stories are different.

Especially when I see families with a child with Down syndrome- I want to stop and get to know them  because I see bits of Addison in the child, and I am instantly in love. Sometimes with the older kids- I can't always understand what they are saying. But I keep listening, and I know that if I turn to the parents they will translate for me. I love hearing their current triumphs/struggles. I love hearing how they made it through the toddler years, and I love to get their insight on things they have already conquered.

To answer the sweet question that was directed my way. How do you stop feeling uncomfortable when you run across individuals with special needs in public?

Imagine you are his/her parent. Imagine what had to be taught/done for that individual to be out and about in such a way. Imagine the journey that has been traveled- the victories that have been won. Imagine the love that has built this life. Smile. Talk when appropriate. And listen. Even if you can't understand. Try. Don't be afraid to ask for clarification or for something to be repeated.

When I'm cheering for a new word that Addison has said, she isn't always understood by other people  because she says it 1.softly 2.quickly her own way. I am MORE than happy to repeat it to those listening so that they can understand her too. I don't get offended by a confused "What?" while I'm in the middle of the "SHE SAID A WORD!" happy dance. I repeat it as quickly as possible so that you can join the happy dance too. 

Last week while grocery shopping with Eli, we met two teenage boys who have Down syndrome. They were shopping for the school store with their special ed teachers. One boy said he loved babies and asked what my baby's name was. When I answered "Eli" he replied "I LOVE the name Eli!" very enthusiastically. The other boy wasn't as verbal- nodding along. But the interaction and the joy that I saw on both of their faces had me smiling the rest of the day.

Someday perhaps my Addison will be the one in the store that you pass by. She might have trouble with personal boundaries and engage you in a conversation that you weren't interested in starting. She might try to give you a hug. She might for all purposes make you extremely uncomfortable. What to do? What to say? For so long she has just been a cute baby who looked a little different, but that is changing. People are already starting to look extra long before glancing quickly away.

All I want- is for you to look at Addison, swallow back your instant panic, see a person, and imagine her story. Imagine a mother who has spent years and years detailing out her love on a blog. Imagine her triumphs and the struggles. Her happiness and the sadness. Imagine how hard she works on mundane tasks, and imagine what a kind word from you would mean to her.

Imagine her story. Smile. Say Hi. Let her know how nice it was to meet her. Completely ignore the fact that you are an apple and she is an orange because you know. You know how extremely valuable oranges are and therefore should be treated with respect and kindness. Continue the conversation as long as you can. Say goodbye. Continue on your way. 

Chances are- I will be in the shadows somewhere near. Smiling. Ready to step in if Addison needs to be reigned back or answer any questions you might have. One thing you can count on- I will be loving the dignity that you are offering her. Dignity through a simple, sincere, "Hello" and smile.

And thank you. Thank you in advance.


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