'Tis the season, right?
As a family with different neurotypes, inclusion is not something we regularly experience. The term "inclusion" gets thrown around quite a bit, from workplaces to schools and government bodies, but there is sadly a vast gap between education, acceptance and the real world.
As a mother of three young non-verbal autistic boys aged seven, six and five, we have had more than our fair share of exclusion, ridicule and being overlooked. My boys have additional medical and social challenges which can further complicate perception of who they are.
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I am under no illusion they that should be invited to everything. Some events or activities would just not be suitable for them, however it would be nice if one - just one - parent would talk to me and send the boys an invitation to something. Anything!
I would love nothing more than if a parent made the effort to speak with me about how we could involve our boys in their child's birthday or Christmas party activities. I'm not afraid to have the conversations. I'd rather have them than watch my boys be excluded and miss out.
My boys are awesome! They are fun, cheeky, intelligent and get into all kinds of mischief like any other kids their age. I just want their circle to appreciate how much they could contribute to a fun day.
The isolation we experience as a family is devastating. The boys have no friends, no play dates and spend their time between therapy, school and home. Going to a park or beach is more of a special occasion than a regular weekend thing, as we require a one-to-one adult to child ratio for their safety.
I am blessed to have a strong, thoughtful and loving husband and we are very much a team. While our marriage is solid, it has absolutely been affected, and quality couple time is virtually non existent. Carers' burnout is real and extremely serious.
With Christmas and school holidays only weeks away, we have no social or party invitations at all. It never gets easier to feel and witness the rejection. It’s easy to overlook the non-verbal child because they don’t understand, right? Wrong! My boys hear, feel and know when they are being left out and, as a parent, I do my best to shield them from the pain.
In the past, we have invited 20 kids to our home for a party only to have immediate family show up. I am a mum who loves to entertain, so I may have gone a little overboard that day in pure excitement, only to send everything into the day care the following Monday as I didn’t want all of the cakes and party favours to go to waste.
Sadly, these incidents are not isolated, and in seven years we have really only had one successful party (which still brings me tears of joy.)
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I speak openly about my family and our experiences because I feel there is such a huge educational gap to close. Yes, we experience challenging times that I share. We also have great wins which I celebrate.
Every person’s autism journey is unique and everyone in my home certainly experiences autism individually. As a family with three children with very high support needs, our world is autism, 24/7.
Ultimately, I want what every other parent wants. I want my children to live fulfilling lives in all stages and aspects of their life. Our journey is no doubt different from that of their neurotypical peers, but they deserve to be equal, they deserve to be validated and they deserve to be included and accepted for who they are.
One in 70 people have autism in Australia. My boys are isolated and excluded and so are many others with autism. I hope things change. I’m calling for an inclusion revolution.
Kathrine is the founder of Spectrum Support, a national organisation dedicated to raising awareness and understanding of autism and providing support, training and education. Their annual Spectrum Xmas Appeal raises money for the development of new training across the community. You can donate here.
Feature Image: Supplied.
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