April 18, 2017
I recently had the joy and pleasure of spending a week in Ireland with one of my best friends, without kids or husband (I know, don’t hate me), celebrating a milestone birthday for the two of us (I won’t say which one but I loved the eighties so you can guess). It was an amazing week seeing the breathtaking beauty of the country, and meeting the ridiculously nice people. For seven days I didn’t have that running list going through my head of everything I need to accomplish on any given day, no chores, nobody asking me to fetch a seventh snack or cup of juice.
It was heaven. It was also freedom.
We were on a bus tour so there wasn’t a lot of time to think about things, but I had a lot of time to process on the seven hour flight home when both me and my friend were finally too tired to talk to each other.
I had a lot to think about.
As usual, when I have large amounts of down time (that would be never) my thoughts turned to my boys, how they’re doing, what the future holds for them. Although they both have autism, the truth is, their futures could not be more different. My youngest son who has mild autism has every expectation of driving, going to college, getting married, and having kids. My oldest son who is on the severe end of the spectrum will need lifetime care, which unfortunately at some point (although I’ll give it my best shot) I will not be around to provide.
As I said, I had a lot to think about.
The truth is, I loved this trip, with its new experiences, its lack of responsibility for others, its summoning of the echoes of my twenty-something self who lived in France for a year back in my college days. Traveling has always been a passion for me, has been when I’ve felt most alive, unfettered. And while I wouldn’t trade being a mother for the world it is something I’ve not been able to do as often as I’d like due to the boys’ diagnoses, which made them difficult to deal with at times.
Okay, yes, that’s the understatement of the century.
Over the years my husband and I have usually managed to carve out one short trip for the two of us annually, and as my eldest son has reached his teenage years I admit I’ve felt a sense of urgency in planning these excursions. In seven years my boy will graduate high school at twenty-one. My mother, who is the only relative able to watch the boys for us, will be in her eighties, so I’m guessing our ability to travel will be limited. You see, the waiting list for residences right now is about fifteen years after he graduates, and even then I’ve been told many of these homes are not places I’d want my son to reside.
The truth is, if we can’t find a good day program for him the day after he graduates he will be home, all day, every day, with me. He will not appreciate this situation one iota. I can tell you, neither will I.
Hence, the sense of urgency.
It really hit me on the plane that my options for fun down the road may be limited. Often I am so caught up in the daily minutiae of autism with two boys that I forget to look at the big picture (which is sometimes a good thing), as I focus on trying to get through the day. I also realized that despite the fact that I am a planner extraordinaire (ask my former teacher co-workers who made me team leader and nicknamed me “goddess”) I have been deliberately not contemplating the not-so-distant future, because while I love my kid the thought of taking care of him 24/7 at almost sixty without a break, is, well, pretty damn depressing.
I need to take every fun opportunity that comes my way and grab it and not let go.
It’s time for me to sign up for those “transition workshops.” It’s time for me to be completely honest about what’s coming down the road- that not every family finds a good, safe place for their disabled adult to go to a day program or to live, or that it might take a long time to find these options. It’s also time for me to forget how tired I am and get out more, recapture that fleeting feeling of freedom when I can.
And the truth is all of us, those who are in the “club” and are lifetime caretakers, need to face up to what’s coming, remain as optimistic as possible, and have some damn fun when we can. The earlier you start, the better.
And as I kick off this significant secret birthday, I’m going to do just that.
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