Hi, I’m a mum to a seven year old with severe autism, severe ADHD, and severe learning difficulties. She’s nonverbal, and developmentally is similar to a three year old, but without any communication skills. I know that I will be her carer for the rest of my life. What frightens me though, is what happens when she finishes school at 18? How do I fill her days?
I know it’s a long way off, but as I’m autistic myself I struggle with the unknown - I compulsively plan everything so that there are as few surprises as possible, but this is a big mystery, and as it pertains to probably 30 years of my life, that’s pretty scary.
We’re lucky that she has a place at a specialist school who can keep her safe, settled and occupied. I wouldn’t say she’s ‘learning’ as such, as her learning disability and ADHD get in the way of that, but it’s a great place for her to spend her days.
But what happens when she ages out of that? How do I fill her days in her adulthood? She’ll never have a job or go to college with her level of disability, and trips out are already becoming impossible as she’s now faster and stronger than me, and will run away given half a chance. I also have ME/CFS, which is getting worse as the physical demands of caring for her intensify the bigger she grows. Will the two of us be trapped in the house for the rest of our lives? What do other parents of young adults do to give their severely autistic and learning disabled kids meaningful and happy lives?
I’m not the best with the internet but I keep searching for programs or day centres or anything for adults with severe learning difficulties and coming up empty. I know those adults must exist, so what are their lives like? Is there any help or support for young adults with learning difficulties after school ends, or are we on our own completely from that point?
Hoping another parent out there who’s 11 or more years ahead of me on this journey can shed some light on this for me.