A few weeks ago my youngest sister moved out of our parent’s home to begin her journey to adulthood and independence. My Mom is finally an empty-nester. She has had children at home for the past 32 years. 32 years. She obviously was a tad excited as she spared no time changing my sister’s bedroom into her new craft room. But I know she felt sad and a bit lost as well. She wasn’t sure what to do with herself without actively playing the role of Mom all the time.
I can only imagine how tricky that transition must be.
Seriously, I really can ONLY imagine. The reality is I will most likely never have an empty nest.
I think I realized that pretty early on, when Brian was three or four. But at that stage I still had a lot of hope that something we were doing would be the key and he would just blossom at an exponential rate and catch up to his typical peers. I had to hang on to that hope as we went to therapies every day, administered vitamins and supplements, and changed his nutrition. Hope was what got me through those early days when tantrums were nonstop, self-injurious behaviors had us both in tears, and I had an iron grip on his hand in public so he wouldn’t bolt into traffic.
Brian is now ten. I still hope. I still cherish every little step towards progress. But adulthood is more of a reality now. It’s closer. It’s looming over our heads. And I would be naive to believe that he would be able to live on his own someday. I would be negligent to not plan for his adulthood.
There will be some options when he’s an adult, at least after we get off of the extensive waiting lists for adult services. One option we will face is Brian living in a group home or to stay at home with us. If Brian does go to a group home at some point, we would still be his legal guardians. We would still be much more involved in his life than any parent would be with their typical adult children. I, honestly, have a very difficult time with the idea of him going to a group home. If Brian continues to be functionally non-verbal it would worry me to no end that he wouldn’t be able to tell us how he was being treated. We’ve talked a lot about buying a home where we could build an attached in-law apartment for Brian to live in when he’s older, so he could have a taste of independence (that we hope he progresses enough to be able to have) but still have all the assistance he needs right at hand.
We’re also acutely aware of burn-out. I joke, even though it’s really not a joke, that I haven’t had consistent sleep in over 10 years now. That wears on you. I’m almost always operating from a place of exhaustion. I worry all the time. My schedule is jam-packed with work, sports schedules, IEP meetings, therapy appointments, specialist appointments, and more. So I know that we’ll need to have supports in place for ourselves as well as for our son.
There are rare moments when Brian sneaks into the kitchen and is subsequently told that he can’t have a snack before dinner and he melts down for over 90 minutes. He cries, flails, is unsafe, and you simply can not get through to him. Those moments make me scared. They make me worry about what will happen when he’s towering over me and I can’t just scoop him up and hug him and put him in a bath full of calming oils. They make me worry for all of our sanity if our life is forever filled with moments like that. I think most families can just breathe and say, “This is just a phase. This too shall pass.”. Autism and other disabilities are not just a phase. They are our life. Forever.
Then there’s moments when Brian sneaks into the kitchen while I’m cooking dinner and smiles at me and hugs me for no apparent reason. He reaches towards me and says, “Up” and I lift him and set him on the island counter. He touches my cheeks and he smiles so large that his nose scrunches up and his eyes become tiny half moons. He flaps his hands as he leans in for a kiss. Those moments make me think we will be completely fine. I could forever live a life filled with unfiltered love and affection.
I was young when I had my two boys and people often said to me, “Yeah, but you’ll be done when you’re still relatively young! The boys will be grown and out of the house and you can go on vacations every year and just relax! You’ll still be young enough to really enjoy it!”. I remember thinking, “That sounds perfect! Sign me up for that!”. That was before autism. Our life will forever be different than what was planned because I’ll always have to take care of my son, always.
Like any parent, I will do anything I can to ensure Brian will flourish, grow, be safe, and be happy. If him living at home as an adult ensures all of that, then that is where he will be. This is my role, I love my role despite the bumps in the road. But I do wonder sometimes what it would be like to know I’d have a future where I could be more carefree. I wonder what it would be like to know that someday my children would be living their own independent, carefree lives. I wonder what it would be like to have a future without all of the worry.