Going for the GOLD

Our role as parents is to provide our children the basic necessities of life: food, clothing and shelter. What we want most for our children is to be happy and healthy, above all else. When becoming parents, we take a secret oath to love fiercely and protect wildly – words that denote my Mama Bear spirit. As our children grow things become more complex as we navigate transitions from daycare to school, childhood to adolescence and love turned into heartbreak. We are a generation of parents who parent unlike the way we were brought up. We were told to go play in the traffic and today we won’t even let our children on the streets unsupervised. We were 6 kids in the back seat without seat belts while this generation is tied into cars seats with standards high enough to launch them into space. We played outside for hours despite the frigid cold because our mother’s needed to save their sanity. So we were dressed up in multiple layers to the point we couldn’t even move our arms in our snow suits, we looked as though we were standing in starfish formation. Let’s not even talk about the scarves they wrapped around our foreheads. On the other hand we will sit in our cars with heaters on to save our children from the cold while waiting for the school bus. What I am getting at is we are invested in our children beyond simply taking care of their immediate needs. We spend so much time, energy and money to ensure their well-being and happiness. Mom’s have become family owned taxi drivers and father’s easily accessible sports coaches. We all know the lengths we will go to for our children.

Kunal and I see our children as a mirror of our values. Our desire has always been to raise good human beings that we hope will one day contribute greatly to the world. For the longest time I thought we succeeded with Manisha because the feedback thus far from family, friends and teachers is how wonderful she is. I swell with pride every time because I have consciously raised her to be a good person in the best way I know how. Always painfully aware that on the other hand I have a son with severe autism who will never be able to contribute to the world, a notion that saddens me. In my head instead of creating a being that could be of service he is a burden to the world. I pushed these thoughts and the emotions deep down – deathly afraid to out myself for having such horrible thoughts. What a terrible way to see my very own son. Shame! Then I realized I couldn’t be more wrong. I realized my son was born to me for a reason and that I would become the vessel for his message – which is:

- I am different not less

- Hear me, see me and please make a place for me

- I am born therefore I have the right to the best life possible

The quintessential way we should view everyone regardless of ability or disability, race, gender, religion or sexual orientation.

I was recently interviewed by Nadine Beaupré, a professional coach who was doing a video series on the subject of “Resilience and Emotional Intelligence” (link on the S.Au.S. website www.s-au-s.org)and one of her questions was a true AHA moment. The shame I had been carrying was suddenly lifted when she asked me “what do you want your legacy to be?” and without hesitation my response went something like this – “I wanted to be a mother more than anything else and in so doing my goal was to raise good human beings. I know I have succeeded. Manisha is a true reflection of all I have ever wanted my daughter to be and imagine my son who lives with severe autism and who can’t even talk has already left his stamp on the world. He has made numerous his contributions: it is because of Keyan that there exists an Annual Autism Awareness Run (Candiac), it is because of Keyan that S.Au.S. (charitable organization) exists and it is because of Keyan that one day there will be a day centre for adults 21+ (desperately needed services). My son has been the beacon for my life’s work and I am merely his vessel to ensure the work gets done.” That moment was magic both for me and the four others in studio that morning. Nadine was moved to tears and had to take a few seconds to compose herself. Not a dry eye amongst me. It is then that I had finally changed my narrative both inwardly and outwardly. In that moment I had declared the contributions Keyan is making to the world in spite of his disability. Reiterating the messages once again:

- I am different not less

- Hear me, see me and please make a place for me

- I am born therefore I have the right to the best life possible

You know how some believe a child chooses its parents – well then if that is true Keyan picked the perfect parents. He would choose a father that would invest every minute away from work with his children – to the point of ignoring his own needs most of the time. Keyan would choose a mother that would love him beyond words and dedicate her life’s work to him. He would have a sister who would simply accept him for who he is. We refer to Keyan as the Maharaja, in our home – simply translated to an Indian Prince. He is the center of our home because when he is happy and well we can all go about our business. Simply put he need us. Don’t be fooled there are so many ways we need him too.

In sharing our family’s story my goal is to demystify what it means to parent a special needs child. One of the things we are forced to do is bring everything back to basics. It takes so long for our children to do things that is easy-peasy for normally developing children. What takes 5 steps for your child will take ours 100 or worse something your child acquires ours may never. Let me tell you though when our children accomplish something we never thought possible the joy associated is also tenfold. We are faced with so much uncertainty that when our children succeed we rejoice – HARD CORE! My beautiful boy Keyan has also provided you front row access to his world. He makes us laugh, cry and smile at the beauty and tragedy of it all. How does it happen that such a handsome curly haired boy is born this way? So sad how he is so limited! Yes, sometimes I wonder what he would be like if he was “normal”. I joke with Manisha all the time saying it’s a good thing he isn’t normal because all of your friends would be after your brother. I also think he would be that boy who my mom friends would adore. He would be just as charming as his papa – polite, considerate, welcoming and full of compliments. When painting a portrait of my son for someone who doesn’t know him I say “I know he has a kind soul.”

Last week my curly haired love accomplished something we had been attempting to do for years. He was finally part of the Défi Sportif which is like the special Olympics for local school kids. Remember what takes a normal child 1,2,3 easy steps takes Keyan many more. So on that day the teachers first had to have the confidence that Keyan could make the trek into the city. He becomes extremely anxious when he doesn’t know what to expect. Here he is taking a bus into the city on a school day (weird), without his parents (security) to a location he has never been to (what is this place). Upon entering the complexe the lights, sounds, smells and movements are all unknown variables. Keyan has to put his blind faith into his teachers. The Défi is held at the Complexe Claude-Robillard, in Montreal, over the course of a week where hundreds of special needs students will participate in running, swimming, cycling events etc. Keyan for the first time ever was at the start to a race on his own (sans papa). Countdown 1,2,3 and they’re off. A 50-meter dash on a tricycle built for an adult frame. Kunal and I opted out of being there because we knew if Keyan saw us it would signal to his brain it was time to leave. Therefore, the morning of the event we asked that the teacher text us to give us a play by play of how everything was going.

Text 1: we made it into the city

Text 2: we are waiting patiently (photo proof included)

Text 3: We are up next and doing well

Text 4: He did it!!! Have video proof and will send it to you later

Text 5: He is super proud of himself (photo proof)

Text 6: We are heading back to school

All the text messages from our end were emoji’s of us laughing, praying and crying. The last texts on the string were one of praise and gratitude for Keyan having such magnificent people caring for him.

Celebration photo

Shortly after the last text a phone call comes in and it’s my husband. He is moved to tears by what his boy has just accomplished. Such an amazing feat without our help. It was like a smack in the face for him, the realization that as the years progress we will have to trust and let go more. The conversation led to the sad reality that there will be a time when we are no longer here to ensure Keyan is being well taken care of (something that plagues the minds of all parents raising special needs children). I digress because that is a whole other blog entry. I simply wanted to share how a simple act can put everything into question. How a man can be moved beyond because his son moved 50 meters on a tricycle without him. This is a true intimate glimpse into our lives – the sacred side of what we share as parents to a boy with severe autism.

Yesterday, more tears were shed. We finally received the video of Keyan’s speedy 50-meter dash. Kunal calls to hear my reaction as I watch the video for the first time – I am busting a gut laughing at how wonderful it all is from the start to finish. My boy is happy! WOW look at him go. As you watch the video you can hear mid-way the yell he lets out. He approaches the finish line with a huge smile on his face ending with a high 5 to one of the teachers. Everyone rejoices in that moment. A gold medal performance. His first gold medal and we have the stats to prove it. All this to say that for all the hockey tournaments, dance recitals and artistic endeavors I witness on social media from my proud parent friends – well this is my proud Mama Bear moment. I wanted to share it with you as a reminder of what our life looks like – it’s not more or less – it’s simply different.

© 2018 Audrey Burt

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