As we age, I think most of us have the same conversation at one point or another. The one where we have come to the realization that what they warned us about is true. That life does really pass you by quicker than you thought it would.
It’s hard to believe, but in my mind, I still feel like an 18 year old a lot of the time. Unsure about the future, feeling like I still haven’t figured out what I want to be when I grow up. Despite being in this position in life, with the responsibility that comes with parenting adults with intellectual disabilities, I still feel young in my mind. Note that I didn’t say my body. I’m not that delusional.
I have all these dreams. I suppose you’d consider it a bucket list. I had just always believed they would happen. There wasn’t much doubt in my mind, I was just waiting for the timing to work out. Writing the novel. Traveling . Getting my boys to Disney World. Starting an organization to benefit my community. Creating a legacy for my kids. Buying a cottage. Financial independence that would enable me to set up my kids’ future AND gift the people that I love in my life. Maybe even finding a life partner – am I even allowed to dream that big?
But here I am. Closer to 50 than even seems possible. Not only do those things seem harder to achieve, they almost feel impossible.
I’ll take a stab at my ex here and call it like it is — but I can see how this realization could cause a mid-life crisis like he seems to have had 8 years ago. When you realize the dreams are further and further out of reach and you don’t know how you got here. I’d be lying if I said I don’t occasionally have those moments where I let myself cry out of frustration at the unfairness of our circumstances.
But I shake it off. Because this IS the life that we have and I have the power to change it. I hate playing the victim-card and it’s crept into my story so much more than I ever wanted it to. And my life story isn’t a sad one. My three kids still have a lifetime ahead of them that deserve to be filled with successes and joys.
This conversation was meant to happen. I believe that the last 19 to 21 years have led my life to this time in my life.
For a lot of different reasons, I’m at a crossroads. Until now for my boys and I, or at least in the last 8 years since we lost the “co” in the co-parent relationship, our life has been directly dictated by the status of the following:
- My ex’s participation
- Stress management
- My 3 children’s anxiety and trauma
- Outside support
For a restless dreamer who also happens to be a control freak, this has been torture for me. A growing helplessness has set me back more than I want to admit. But there’s a looming deadline that is forcing a shake-up. Whether I am ready, or whether I like it or not, my twins are 19 with only another year or two left of school.
With nothing planned for them when they’re done.
With no job, no savings, no plan for me.
What will become of us?
My situation feels hopeless. If you’ve been following me along for the last couple of years, you’ll know that I once was managing a life with a crazy-busy full-time career, while single parenting the twins and my oldest who struggles with mental illness and addiction. But you’ll also know that I couldn’t keep it up any longer. My body and my mental health shut me down. I can’t ever go back to that pace of life. It’s not even a decision that I have made, but it’s another decision that has been dictated to me because it’s impossible.
And that’s where the hopelessness comes from. Realizing that more and more, my health and my aging are dictating what happens to us, in a world where marginalized people and their caregivers are not really factored into the plan. Despite my education, my contacts, my resourcefulness and my tenacity, I can’t seem to make this work.
My stress levels will not allow me to work outside of the home anymore. But then the stress of parenting the twins on my own is not working either. They need more than just me and I need an income to keep a roof over our heads. But how do I work from home if my kids need my constant attention?
So what’s next?
Well.. that’s what I’m committed to finding out.
The clock is ticking and I have no choice but to figure this out now. I remember social workers, doctors or other families who had children with disabilities telling me that the transition to the boys’ adulthood would happen quick, but it never sunk in. What parent of a three year old is making plans for when their kid is 19? Life was just too busy and too intense to look that far ahead. But here we are.
As a parent to two autistic children, I would say that the first few years following their diagnoses were definitely the most emotional and intense of our family’s life. And despite the fact that there weren’t a lot of supports, there were still some. And what we lacked in terms of governmental support, there were some charities and there was the experience of other families who had gone before us, to help guide us.
But I’d say we were somewhat spoiled back then. Because when your autistic children turn into adults, it’s like they no longer matter to the big picture. For those autistics who require intensive caregiving support, we just become the story or family that people might feel sorry for, but don’t feel is their ‘problem’ to worry about. Opportunities, support and inclusive programming seems to be an after-thought.
In my experience and observations, the families that include a person with more severe intellectual or developmental disabilities that have gone on to lead rich, full lives and not found themselves in poverty and crisis, are those with two-parent families.
That’s not my family.
I know there are so many more out there like mine. I know I’m not alone. It just feels that way sometimes because I think those single parents are burnt out in isolation and I haven’t come across many of them.
The Willowjak blog started out as my journey to wellness. So at this crossroads, I’m on a new journey. One where I recognize that my own wellness is 100% dependent on knowing I have designed a future for my boys that will find them safe, supported and fulfilled whether I am on this Earth with them, or for after I am gone.
Going forward, the Blog may adopt some new changes. I hope you’ll continue to check in and read the insightful pieces posted by my friends every Tuesday and Thursday.
I am going to start a new series called the ‘Willowjak Blueprint‘ that will capture my family’s journey of designing this next phase of our lives. Your support and readership has been a large part of my motivation to keep positive in light of the struggles we face and I’ll be so grateful if you continue to come along for what’s next. If you know of any other families who are going through this similar transition to adulthood, please invite them to follow us as well so that we can build our community. We can all learn from each other.
I’m trying my best to pay it forward by dealing hope and sharing stories & tips on caregiving and how to survive hard things. I blog a lot about single parenting my adult twin sons who both have autism, and the challenges we face in surviving the everyday challenges and planning for a future full of unknowns.