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Mary's Moments Blog Post

Neurodiverse Journey – Tough?

March is Developmental Disabilities Awareness Month!


This year’s theme is “A World of Opportunities” – celebrating people and working together to remove obstacles.  Raising awareness of the barriers that people with disabilities still face with respect to full inclusion in their communities.


Life with my youngest daughter has been quite a ride of emotions, challenges and celebrations.   She will be 25 years old this year and has taught me more about resilience, patience, and unconditional love than I ever thought possible.





From the very beginning, it was evident that our life together would be different. While other parents celebrated milestones like first words and first steps, we navigated a different path.


There were early signs that something was unique about our daughter—the way she interacted with the world, her struggles to communicate, and her sensitivities. But in those early years, we were just beginning to understand what it meant to be neurodiverse.


The ups and downs were plentiful. There were moments of sheer joy—like when she finally stuck her tongue out for the first time.  We spent gruelling hours using popsicle sticks and lollipops to get her tongue to protrude so that she could start forming words.





Every couple months getting new leg braces shorter than the ones before – looking forward to the day she would walk with only orthodics in her shoes.  Celebrating the day we took the alarm off her crib – seizures were no more.   Meeting so many wonderful therapists and support workers along the way – each one bringing something new to the table that helped in her development.  


There were many tasks my daughter accomplished which at the time seemed insurmountable. These victories were celebrated with tears of happiness and hugs that lasted a little longer than usual.  A lot of clapping and dancing in the kitchen.  But alongside the triumphs, there were also lingering heartaches—the frustration of not being able to understand her needs at times and the constant worry about her future.


Then came the occasional pang of sadness as we watched her struggle to fit in   Not being invited to birthday parties and not to mention the never-ending visits to Sick Kids Hospital which is the best place to be when you need them however, you never get used to all the poking and prodding.

 

Caring for a neurodiverse child is exhausting, physically, mentally and emotionally. There are sleepless nights spent caring for them - researching therapies and treatments, endless appointments with doctors and specialists, and moments of doubt when you question whether you’re doing enough. 


Being asked her shoe size only to hesitate because you really don’t remember.  Ask me about the myelination in her brain and I can share an abundance of information.  For interest sake - myelination is the process by which nerve fibers are insulated with a fatty substance called myelin, which helps to increase the speed at which impulses are conducted along the nerve fibers in the brain.


Sometimes, navigating all the detail is like sailing through a stormy sea with no map. Every day brings new challenges, and sometimes it feels like we're drowning in them. Simple tasks that other families breeze through become monumental hurdles for us. Things like getting dressed, being overstimulated on an outing or even having a meal can turn into battles. And if they have digestive issues, every bathroom visit is daunting.


Imagine trying to calm a storm raging inside your child's mind while also trying to keep your own ship from sinking. It's exhausting, frustrating, and at times, it feels like we're fighting a losing battle. But amidst all the chaos, there's one thing that keeps us going: LOVE.


Our journey has been a mix of the highest highs and the lowest lows—all wrapped up in one beautiful, messy package. It's been about embracing the uniqueness of our daughter and celebrating her strengths, while also acknowledging the enormity of tests she and we have endured and continue to experience.


Despite the challenges, there is so much joy to be found in this life with her.  It's in the little moments—the shared giggles, the unexpected hugs, and the genuine expressions of love. It's in the way she sees the world differently, opening our eyes to new perspectives and teaching us to appreciate the beauty in the everyday and in everyone.


She has defied expectations and proven that being neurodiverse does not define her.

While many things neurotypical families take for granted are more challenging in our world, our victories are big and we celebrate big.


It's what gives us the strength to keep pushing forward, even when it feels like we're running out of steam. Whether it's saying their first word or making a new friend – the joy we feel is immeasurable. We celebrate these victories with everything we have because we know just how hard-won they are.


So yes, life with a neurodiverse child is tough. There's no denying that. But there's also no denying the boundless love that fills our hearts every single day. It's what keeps us afloat in a sea of uncertainty, and it's what makes every moment worth it in the end.


Our current team of support workers are 5 star - pillars of strength in our daughter's life. With their unwavering dedication and compassion, they uplift her spirit, empower her growth, and fill her heart with warmth and joy. They also guide her through challenges and celebrate the triumphs alongside us.  We're deeply grateful for their invaluable role in our family. ⭐️⭐️⭐️⭐️⭐️


As my daughter has grown, she continues to be a shining light, strong and gentle at the same time.  Every day, she faces profound challenges behind closed doors but that takes a backseat when others are around as she manages to make everyone around her feel admired and loved.  Her smile is like a warm hug. 


Whether she’s reading or taking a walk, she’s always curious about what’s next.  She has an unquenchable thirst for learning. With the right support and environment, she demonstrates an incredible capacity to absorb information and make connections.


When she dances, she lights up the room with laughter and happiness.  She’s kind to everyone.  She doesn’t shy from strangers and feels they are just a friend she doesn’t yet know.  Her life is full of love and friendships. Being with her brings out the child in everyone.  She is happy and has a glow wherever she goes.


Her brilliant sense of humor lights up our lives on a daily basis and her infectious laughter and witty remarks bring joy to even the most mundane moments.


Her energy levels? Well, let's just say they're in a league of their own! With boundless energy, she tackles each day.


There are days that living with anxiety and behavioral issues can be extra tough for us and some other folks in our neurodiverse community. Sometimes, it's hard for them to express themselves accurately or control their actions. This can be really taxing on parents or caregivers who are trying their best to support them. Imagine feeling overwhelmed by your own emotions and not being able to explain why. It can be frustrating and isolating. For some individuals, it's like being stuck in a maze without a map, trying to find a way out but feeling lost. This journey isn't easy for anyone involved, but with patience, understanding, and support, it is possible to navigate through these challenges together.


Our neurodiverse community is full of amazing people with endless possibilities and abilities. We have friends who go out to work everyday, showing that they can contribute to society just like anyone else. We also have friends with whom we share programs, learning and growing together. Many of us do volunteer work in our community, making a positive difference.  Just recently, some of our friends came back from the Special Olympics in Calgary, and guess what? They won SILVER medals! It's incredible to see what we can achieve when given the chance. We're proving that we're capable of great things, and that's something to celebrate.



In our family, we don’t focus on limitations but rather endless possibilities, and we're grateful every day for the privilege of having our daughter in our lives.


She has taught us to celebrate diversity in all its forms and to embrace the unique gifts that each individual brings to the world.


Her love guides us through the toughest times and fills our hearts with joy beyond measure.


The past 25 years, my daughter has taken me on the most amazing trip of my life.  

It was not a journey I had planned to take…….but I sure do love my tour guide.❤️

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