The Au-Kline Syndrome Community

Jojo is 8 years old. If I’ve learned anything in the last 8 years, it is that having a kiddo with special needs is isolating. It can feel lonely. It can be lonely. In our traditional circles of friends and family, there are no other kids with special needs. I feel very blessed to have family and friends that support us, and accept Jojo just as she is.

But I need more. I need to know I’m not the only one. I need to understand how to navigate the education system, what kinds of supports are available. I need deep, meaningful relationships with families like mine. I need to feel in my bones that I’m not alone in this.

We’ve found new circles, beautiful circles. Jojo’s classmates and their families, a local support group for parents, the horse ranch where Jojo rides, and even a global support group specific to Au-Kline Syndrome on Facebook. These circles are the antidote to loneliness and isolation. For me they are essential.

Au-Kline Syndrome is relatively new and super rare. Genetic testing is becoming more widely available. As a result, there continue to be new diagnoses all the time. I’ve gotten some comments on recent posts about this. If that is you, and you want to join the Facebook support group, you can do so by scanning this code

You can also email me at sara@jojothestrong.com