Written by Peer Navigator and Grandview Kids parent, Kristen M.
Ace was to be the missing puzzle piece to our beautifully blended family, but little did we know that he would open our eyes and hearts to a community that the puzzle piece (and infinity sign) represents.
Our youngest of five boys was diagnosed with autism in May 2020 at the height of the pandemic. His diagnosis came with both relief and grief. I was relieved that my mother’s intuition was that something was different about Ace-note and that I did not use the word “wrong” … that was intentional because there is absolutely nothing wrong with Ace. In fact, there is so much right with him that we are reminded daily of his extraordinariness!
The grief piece stemmed from our fear of the public’s lack of understanding and awareness of autism and disability culture. I was hit with the stark reality that as a mother of a non-speaking autistic child, I would most likely have to advocate and fight for Ace’s fundamental rights for the rest of his life. The rights that my four older sons are automatically granted…
However, my pity party did not last long. I immersed myself in all things autism and quickly connected with local parents of children with autism within the Grandview Kids community, and they soon became our family sounding board and dearest confidants. Then our circle grew larger when we enlisted the help of pediatricians, speech and language pathologists, behavioural therapists, and occupational therapists, just to name a few.
At that time, I thought I was building an army to fight for my son’s mere existence, but to my surprise, we instead organically grew a warm and welcoming village. A village that looks out for one another and rallies to protect our kids from the often mean outside world that this Mama Bear feared. A village where our children can be their authentic selves and where we caregivers can laugh or cry without judgment depending on what season we are currently navigating.
Navigation is the perfect word to describe my newest chapter of autism acceptance…Last month, I became a new member of Grandview’s growing Family Engagement Team as a Peer Navigator in partnership with Durham Region’s Entry to School (ETS) program.
After four years of therapy, self-directed learning and advocating for my son alone, I now get to work beside families who are at the beginning of their child’s autism journey and let them know that whatever they are feeling is valid and that the entire Family Engagement Team is here to support them, through our varied lived experiences.
I hope that through my unique lens, I am able to guide families to the programs and resources that they seek. Most importantly, in my humble opinion, I hope that I can connect them to the warm and welcoming village of Grandview caregivers who supported me during a very hard season of my parenting journey, a season that not many people in my inner circle were part of or understood.
Our kiddos may age out of the agency, but they will forever be a part of the larger autism community, and I genuinely believe the connections I have made through Grandview will last a lifetime and when it feels like the mean outside world is not accepting my son’s autism fast enough or accommodating his needs, I know where I will turn to for support, and I hope you will know too.
Ace has made me a better mother and advocate, but the Grandview caregiver community has made me a better listener and friend.
