27/04/2025
Ginny is 23! Many of you know, she experiences autism, which began with a dramatic overnight regression at 19 months.
Ginny makes everyone she meets a better person, and on her good days she’s a sparkly and loving soul who lights up the room. However, her challenges are immeasurable, and it’s likely she will require intensive lifelong 24/7 care.
We have worked hard to optimize her quality of life and function, and thankfully her good days outnumber those with insurmountable struggle. Some days she suffers terribly, despite our best efforts.
Trust me when I say the extraordinary gifts in autism also come with a lot of hard-won successes. In our case, the wins follow 20+ years of perseverance, research, and intense therapies - mostly paid out of pocket.
Ginny is highly intelligent and even gifted, having passed proctored testing to earn a HS diploma, and she’s able to type independently. Yet communication is still limited, as we continue to explore with the help of Diane Powell of the Telepathy Tapes podcast.
My experience is not extraordinary, and I’m a pretty typical autism parent to a moderately impacted child. I know literally tens of thousands of families on the same journey. We meet in our private forums, where we don’t haven’t explain why we are seeking answers to ease our child’s obvious suffering. It’s not controversial to us because we live it.
We live with the type of autism that’s not seen on TV shows, unless it’s a tragic news story. It’s said most of us have PTSD rivaling combat soldiers, from being physically accosted when trying to protect your child from harming themself. On rare nights “off”, assuming we are lucky enough to have respite, we often hear a memory of their noise and wake up to check. Breaking drywall is a distinct specialty amongst behavioral autism. My brilliant contractor husband Brian Champagne finally broke the never ending cycle of repairs, when a split second punch takes 3 days to properly fix. Unfortunately, this is a growing specialty.
So yes, I believe there is much room to discuss how we can better serve everyone with all levels of autism.
This is my mission through nonprofit Autism Safe Haven. There must be room for many approaches, to accommodate a wide range of severity and needs in every individual. Because autism means many different gifts, challenges, and levels of life impact.
As Autism Awareness month comes to a close, please listen to the families, speaking out about their experiences. We have been waiting a very long time to be heard and represented in the autism conversation.
I told our whole story on the Fearless Motherhood podcast, and we talked cannabis for autism, vaccine injury, and the Telepathy Tapes. Most diverse convo yet - much thanks for FREE speech being restored on FB 🙏 https://fearlessmotherhoodpodcast.podbean.com/e/fearless-conversations-cannabis-therapy-in-autism/?token=f9546f105425b5186a6540054468a20e
