December 26, 2013

Let’s Lose the Labels.

I was at Value Village tonight with my daughter and my mom.

We were having a great time perusing the aisles and looking for the best deals for a new winter coat for me. I could not bring myself to pay over $50 dollars for a coat I didn’t really love…so off to Value Village I went. My mom was kind enough to follow my daughter around the store while she explored and I was able to try on all my potential treasures. It was on this shopping excursion that I was once again reminded of the importance of carefully choosing our words with those who cross our path.

It is amazing how powerful words are… one combination of words can instantly take you from a good mood into a bad mood.

Words can breed hope or words can steal joy.

After I had found my two new winter coats, I ‘swapped’ with my mom and let her shop while I followed my daughter throughout the store. I was happily following her while she checked out the eclectic mix of people at Value Village when I noticed a lady who looked familiar. I could tell she recognized me too… it finally clicked that she was in a divorce/separation support group that I had attended.

We had that awkward moment when you see someone from any kind of support group in the outside world. You almost feel like you can’t acknowledge you know them or it would be breaking confidentiality; but, we did both finally make the connection and exchanged pleasantries in the kitchen utensil aisle.

It didn’t take long for her words to steal my joy and push my good mood off the edge to plummet to the ground. She looked at me and then she looked at my daughter and before she opened her mouth I knew she was going to make me upset. I could feel myself cringe before the words came out,

Does your daughter have special needs?

This is not the first time this has happened, and once again, I felt awkwardly compelled to tell her a full run-down of my daughter’s medical history. Luckily for me, my daughter kept moving, giving me a perfect excuse to duck out of the conversation, but it caused me to reflect on that feeling. Why can I ‘not accept’ a label for my daughter.

Why can I not refer to my daughter as a ‘diagnosis’ even if the rest of the world is okay with it?

As I considered my very visceral reaction to this lady’s comment, some realizations started to take place. The little busy five year old running through the aisles and signing to communicate is the same heartbeat that I saw on the monitor at 8 weeks. The little girl who can’t sit still at preschool is the precious fetus that kicked me for the first time at 5 months. The little girl who can’t move as smoothly on the playground as other kids her age is the same baby I prayed for and sang to for 38.5 weeks in my tummy.

She is my heart. She is my joy. She is not a label, she is a miracle.

I feel it is so important for people in the world to understand the depths of emotion that any parent of a child with ‘exceptionalities’ goes through on a daily basis. When people encounter a child who is different than their view of normal, they should offer them the same respect, acceptance and kindness they would give any child.

Often I think well meaning people try to be helpful by bringing up the disability to parents like me. I can’t speak for all parents, but I know in my situation, I just want to be given hope. I have spent countless nights up, worrying about my daughter’s future. We have been to General Practitioners, Pediatricians, Developmental Pediatricians, Pediatric Neurologists, Child Psychologists, Speech Therapists, Occupational Therapists… all trying to figure out what is ‘wrong’ and sometimes you just want someone to point out what is ‘right’.

I was recently watching Oprah’s Lifeclass and she had Brene Brown on speaking about vulnerability. Brene Brown said, “We need to accept help without judging ourselves. If we can’t accept help without judging ourselves, that means every time we help someone else, we are going to judge that person.”

Parents of children with ‘diverse-abilities’ need helpwe wish we didn’tbut we do.

I have come across a handful of people in my life who have met my daughter and did not instantly ask me why she’s not talking or what’s ‘wrong’. It was the most precious gift to me. When unconditional acceptance flows, it is a beautiful thing.

As I thought further into what made those experiences so positive it caused me to see how we as a global community could help one another even more.

1. Teach your child tolerance.

It was about two weeks ago that I took my daughter to an indoor playground here in Canada. She loves people and will often grab a hand of a child she wants to play with. On this particular day, she grabbed the hand of another very sweet little girl, who instantly ran off with my daughter hand in hand. They were having a lot of fun, and then at one point my daughter pulled her hair to get her attention.

The little girl came running over to her mom (whom I had just met) and was crying because her hair had been pulled. What the mom said next made me cry because her words were laced with such compassion and kindness.

She said, “Your new friend talks in different ways then you do, so if she is touching you, I want you to stop and look at her, and find out what she is trying to tell you.”

I still cry when I think about it. It is such a blessing to come across children that have been raised with an attitude of tolerance and acceptance.

2. Ease our anxiety.

I think it would be safe to say that most parents of children with ‘diverse-abilities’ deal with anxiety.

My daughter is an explorer, she loves to touch, feel, see, climb, everything. If she is in a new space, she wants to explore every part of it. This is a wonderful quality, but if you are trying to have a visit with another mom on a play date, it can make the visit very stressful. You try to act normal and have an adult conversation, but inside you are paranoid of things getting broken or touched that should not be touched.

I remember going over to a friend’s house for a play date and she asked me the most simple, yet peace-giving question, “How does your daughter do with stairs?” It was at a time when my daughter was still a little shaky on stairs, and I definitely would not have been able to relax and visit if I was worrying about her near the stairs, so my friend put up a gate, and it brought me such peace. Anticipating the needs of a parent like me is such a precious gift.

3. Help us laugh!

Laughter really is the best medicine. Parents of children with ‘diverse-abilities’ deal with some pretty serious topics on a regular basis. Tell us a funny joke, take us out to a funny movie. Bringing the humor back into a parents life will help them focus on the joy of life and give them a mental break from their day to day worries.

4. Tell us something wonderful.

One of my daughters’ greatest fans is a friend I met in Hawaii. Every time I see her, she tells me how smart my daughter is, how beautiful she is, how funny she is, she doesn’t ever mention what she is not doing, only what she is doing. Being around people like my friend is such an uplifting experience.

5. Make your community accessible to all.

I recently moved back from the warm tropics of Hawaii, to my motherland of Canada. As much as I miss the warm weather, I have found my home and native land to be a wonderful model of what an accessible community should look like. It is a priority in this country to include all ability levels.

The more we can create an attitude of tolerance and acceptance in our communities, the easier day to day life will be for families with exceptional children.

There is great power in our hands to make a parent’s day by accepting their child, just as they are, and giving them hope. Let’s lose the labels and pass out positivity to those around us.


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Assistant Editor: Karen Cygnarowicz / Editor: Catherine Monkman

Photo: courtesy of The Daisy Project

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