It’s A Marathon, Not A Race

Aleasha Whenham lives in rural Manitoba with her husband Jason and her 12-year-old son Jake, who was diagnosed with Salla disease, a rare genetic condition that results in a global developmental delay. She considers her family fortunate to be able to learn about RDI through the RELATE program. This reflection on parenting is shared from her blog, I Dream Things That Never Were.

“It’s a marathon, not a race”….Have you ever heard this phrase? How about,“you have to slow down to speed up”?

I have always preferred quick results when I had a goal in mind. I am not good at delayed gratification. One example was the time Jake’s new play structure came in the mail. I was so excited to put it together, instead of waiting to read the instructions or waiting for Jason to help, I proceeded to struggle to put it together in the rain. I put a few holes in the plastic while I tried to pry some pieces together with a screwdriver. Trust me it was a funny and bizarre image.

I was no different when it came to my goals for Jake. I would show him how to do something and be disappointed if he didn’t get it right away. It was one of my grief triggers (see earlier blog). I wanted to race to each new stage.

Thankfully, even though I often was in a hurry to get things done, my mom and dad also developed my ability to be mindful and just live in the moment – to be present. I am so good at slowing down sometimes that in my family we jokingly refer to me as the slow sloth from Zootopia. My dilemma was that I was either too slow and almost in shut down mode or I was zooming and juggling 10 balls at one time. There was no happy medium. I think both styles were ways for me to avoid the really hard work.

“It’s a marathon, not a race” as well as “you have to slow down to speed up” became new mantras for me. It means that development takes time. A LONG time sometimes. It is hard work. Over time I learned that some things that might take another child a day or two might take Jake months or years to learn. For each skill, he would require repeated experiences. New skills require memories. Instead of a picture, it is like a movie. Each picture is slightly different and from a different angle or perspective. All of the pictures together weave into memories, which lead to the ability to take on a new task related to those repeat experiences.

This mantra means its okay to not see new developments for months at a time. It means that great things are happening in our brains that we can’t see. When you train for a marathon you have to work at it every day. You have to build muscles and skills that you didn’t previously have. This mantra means that we need to push ourselves and Jake farther than we thought we could. It also means that we need to take rest days to recover.

We are not at the finish line but it has been a rewarding journey so far. When we started this journey Jake did not allow me to comfort or soothe him. It took many baby steps and I had to work through his initial resistance bit we have arrived. Just tonight, Jake could not settle at bedtime. He let me rub his back and sing to him and cuddle him to sleep and these things served to relax him. In the past, a lot of these things agitated him and we got hit or yelled at. He now offers hugs to me when he is happy. He smiles and giggles. He is more interactive. He has facial expressions he did not used to have. This all is a result of hundreds of moments shared with us and with other people, for him to slowly pick up on how to coordinate socially with other people. This kind of skill is not picked up overnight or over a month. It is a process that takes years.

Another cool thing that has come out of our marathon is that Jake pays attention to things we pay attention to. It used to be like pulling teeth to get Jake interested in something we were trying to show him. It sometimes felt like we had to stand on our head and do a circus act to grab his attention. Yet again, we have arrived. The other night I brought home stickers. They were outfits that you stick on the person in the picture, depending on what career they have. It was amazing to me that he was so interested and engaged with so little effort on my part. All of the times I felt silly exaggerating to get Jake’s attention now seem very worth the effort.

So, these mantras are what I needed to keep the faith that my efforts were not in vain.

Someday they will start to pay off and someday is today.

One comment

  • Virginia Dansereau

    This was a good piece on your efforts with Jake. I listened to a cbc program on autism yesterday and saw similarities. Baby steps.
    I hope you and your family are doing okay. I so admire you.

    Love, Aunt Virginia

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