“WE’RE IN THIS TOGETHER, Like It or Not” – Nancy
I know I’m one of the lucky ones. We still have our son. There was a moment in time where I seriously considered giving up custody of my precious baby boy, my third child. Sam is 21. He has CTD and therefore, Autism, Epilepsy, Sensory Processing Disorder, food sensitivities, ah… you know the list.
When Sam was 13-14, he was raging to the point he kicked 3 windshields out of our cars in 2 months. While nutrition and supplementation have done much to bring him back and calm him down, he still has his moments. 6’2”, 160 pound Angry Bird moments.
Sam’s final last day of school was June 14. And life as I knew it, had come to an abrupt halt. No more morning Bible Studies with my ladies, no more girl lunches, no more club meetings, no more shopping, no more solo hiking, no more solo anything. Sam is my constant companion now whether he likes it or not. Obviously, there are moments when neither of us likes it. But it is what it is.
We’re finding our new normal and it’s not easy for either of us. He still asks, every day, if he has school. It’s not that he wants to go to school- the bigger question he’s asking is “What am I doing today?”, in not so many words. When the structure of school ends, the transition to adult services can be rough. My husband and I are creating a farm-based day support and co-housing community, which will eventually provide Sam and others a safe place to work and live. To be honest, I had hoped Sam could transition more smoothly into the day program, but it takes time to build a village. In the meantime, here we are.
Sam is one of the first waves of autistic children entering adulthood. And just as childhood was uncharted, trial and error, and mostly parent-led, so, it seems, is adulthood. Most of my friends in similar situations have cobbled together a day program for their young adult offspring-at least a day or two a week. Some have even opted to move their child to a group home or facility. For some, it is working great! Others are struggling, either to find the right placement or with separation anxiety, being so far removed from their child day-to-day. And still others are dealing with issues of abuse at the hands of caregivers; one is too many but I know of several. Unacceptable.
So Sam’s day program, for now, is helping us build his day program. I could place Sam in a day program somewhere else and get my life back but that was never my goal. Sam IS my life, and we’re building this community for HIS life. And we’re all in this together. Whether he likes it or not. :)