"I did not line up cars, but I had evolved into a person with autistic traits - narrow interest, poor social skills, low frustration tolerance & perseverative behaviors!"
I have spent the better part of the last 14 years like a fish, submersed in my ocean, not of water but autism. The size, scope and impact of life in my ocean continually unfolds and never ceases to surprise me.
I had no idea how difficult it would be to reinvent myself, and relate as a grown up outside of my autism existence until it came time for me to go back to work. I'd was used to fighting for my son everyday, battling for care, dealing with the day to day changes in care, taking him to appointments and chasing down services. I didn't do normal people things I spend my days sitting on the floor with him, living in Yoga pants, wearing no jewelry or make up and keeping my hair in a pony tail so my son wouldn't pull it out! I was a autism mom, a warrior, in the fight on the front lines for almost 13 years. Re-entry was so rough and slower than I imagined. I had lost my sense of humor, forgot how to "chill out", I had no hobbies, no mate, I was behind on politics and world affairs. I had no idea how to "be" how to act. I was lost!
For anyone who does not know, autism isn't just something that comes into your world, it becomes your world, your entire environment; it's everywhere, everything. For me, for years it was the tread that ran through every moment, activity, relationship and conversation. It was all I talked about, thought about, it was infused in my dreams, nightmares and in all I did. Autism became my daughter's, my mom's, siblings, co workers and friends. If you knew me you were swimming in my ocean, living with autism.
I evolved to adapt to my new environment; I became disinterested and eventually incapable of having a conversation about anything else. People who were not talking about autism, lost me right after "hello". Autism had to be a part of the conversation or I was out, I had nothing to say. As a result my friends and family who did't adapt and couldn't live submersed in my ocean, quickly faded away.
I was living in a tiny world of my own design, living a life of isolation. My son wasn't the only one living a life of autism - I had become autistic through association. I did not line up cars, but I had developed an autistic traits - narrow interest, poor social skills, and perseverative behaviors, I was isolated and I was no longer typical!
I had one false start after another, adjusting and adapting. Everything I've described mixed with Nick's continual need for care and my guilt for trying to pull away; to work to support us and take care of myself only made the process harder, and longer.
It took just over 4 years from when I first said I was going back to work, until I was really back to work.
The guilt about working is controlled (not gone) by the reality that if I don't support us, no one will.
The guilt about taking care of myself is smacked down when I realize, a sick me won't be of any good to them, and I want to be here as long as I can to look our for my children.
The guilt about doing things for me is, nobody wants a resentful needy mom. I know caregiver is going to be a lifelong job for me, and we all know that caregivers die young. My solution is to make sure I have some fun (however I define that) and build a life outside of working mom and caregiver, which will help me to be a happier person and a better mom. Or so I think.
We can do this!