Caregiving, Disability

August 11, 2021

What a Difference a Decade Makes

inukshuk banana constellations apraxia tattoo on forearm
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My blog started as a way to document my journey to wellness, but turned into a place to be inspired by others through our collective messy & authentic stories. Now it's my favourite place to be.

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A decade ago I had just given birth to my second son.  Our family was growing, and I had no clue what was in store for us. In the first 24 hours after he was born, I said to my family “he will be my challenge.” It was the spark in his eyes, there from day one.  I somehow knew he would challenge me. 

In my mind I thought he’d become someone who taught me the need to be firmer with discipline and would be a troublemaker. My first born son was already a very easy going child at almost 2 years old, and this one seemed less likely to be so easy. 

I had no idea how accurate, and how wrong, I would be. 

As he grew, it became apparent he was different in many ways. (I can say this in retrospect, at the time I didn’t know it was a difference). He was stiff as a board, instead of the typical floppy baby limbs. He never made the sounds my older son did in the crib and never babbled … but he did vocalize.

As he reached milestones late, I was told it’s normal for boys to do that and normal for a second child to be “lazy” and watch their sibling, or to let their sibling do things for them. I knew no different so I went along with this line of thinking for a long time. Probably too long. 

At 2 when he wasn’t talking we looked into speech therapy and of course had to wait for that and then go through the proper channels. Everyone told me to talk more to him and he’d pick it up. I’m a freaking English teacher – I talk a lot, thank you very much! 

Eventually we were told he was suspected to have apraxia – a speech motor disorder. This rocked my world. First I had never heard of it. Secondly I had no idea what it meant. As we started to explore different ways to communicate, we utilized his love of technology and began using an iPad as an Augmentative and Alternative Communication (AAC) device. 

After a couple months of modeling AAC in his iPad, on November 4, 2014 he brought his iPad to me and asked for a banana. I asked if he was hungry and he again used the iPad to ask for a banana.  I cried, and of course he got all the bananas he could eat. 

A few months later I got a tattoo to commemorate this moment.

An inukshuk represents “I was here”, and is a marker for a journey. I chose to represent the journey We were on with my son, and that’s why I have a banana on my forearm. The stars are for the constellation he was named after. The stars also are a part of the Apraxia Kids Logo, which has become such a part of our lives. 

Another year passed and he was then diagnosed with Autism Spectrum Disorder (ASD) and ADHD.  We also did genetic testing which revealed a genetic duplication. Our little boy was indeed going to have a challenging life – and required us to change our lives too. My older son was also diagnosed with ASD and ADHD. Over time we’ve learned they are the exact opposite in terms of strengths and needs. One talks non stop, one doesn’t speak.  One loves noise and movement and running around, while one hates loud noises and likes to be quiet and hang out at home. Balancing the needs of both kids at once is sometimes difficult, but we’ve learned ways to manage it. 

Over time I/we (my husband and I) have learned to advocate for our children.  We’ve advocated through therapy programs, preschool, kindergarten and elementary school. My son turns 10 and is a great communicator- using signs, his AAC iPad and non verbal communication skills. He has a handful of spoken words. He has taught me to cherish each word, each everyday experience, each milestone great and small. 

This blog entry may sound like the past decade was a breeze. It wasn’t. It was trying for me personally as well as trying for our family and marriage. I spent several years off work, a good chunk of which was spent unlearning and learning new things, new strategies, new expectations. It required therapy for our kids as much as for ourselves. It meant facing challenges head on, dealing with mental health issues as well as the physical health aspects. 

I think back to my words when my youngest was born 10 years ago and I realize I was right that there would be a challenge, but I had no idea of the challenges we would deal with and live through as a family. It has made us stronger and better for it. 

I look regularly at my tattoo and remember how far we’ve all come. The past decade has been a roller coaster. I’ve been supported by friends, family, and above all my husband. We’ve built a community around ourselves. It takes a village to raise a child – and we have found our village over the past decade. We’ve met people we wouldn’t have met it if wasn’t for my sons‘ needs. We’ve found a faith community that loves and accepts my children for who they are, for who Creator has made them to be. We’ve found acceptance and love in many places and have surrounded ourselves with it. 

Here’s to the next decade – May we continue to face our challenges with courage and love. 

Marilyn R.

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  1. Carol sargeant says:

    Marilyn, you have advocated fiercely 4 Orion and r to b commended. Yes, the Creator formed Orion this way and we love every ounce of him the way he is. He is such a sweet loving boy with a contagious smile. You have grown in leaps and bounds with the challenges of life. Keep smiling and do all that you can 4 sweet orion. Hugs ( )

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My blog started as a way to document my journey to wellness, but turned into a place to be inspired by others through our collective messy & authentic stories. We chat about themes that are often ignored and voices that aren't often given a chance at the mic. Now it's my favourite place to be. 

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