It's a new year, but I am having old, dark thoughts, spilling out in the long nights still enshrouding these too short, too cold days. I am worrying about what will happen to my autistic son Jacob, when I am no longer here to take care of him. This not very fun line of thought has been engendered by this circumstance: as you read this, I am home crankily recovering from recent gall bladder surgery.
Yes it was laparoscopic, and supposedly an "easy" operation. Certainly compared to what it used to be, it’s a cake-walk. But still, to me? To my 50 year-old body? It's still surgery.
There is a recovery period. I am in it. There is a period of time that is counted in days, possibly even weeks, before I will be able to function up the capacity of my usual self. There is a period of time when I need to be the one taken care of, when I will need to hang up my usual cloak, that of the caregiver and don that of its counterpart, the care receiver.
And me? I'm an impatient patient, not so good at this other side of things. Some of it is because I have so little practice; other than my c-section to deliver my full term twins, I have never donned this (ugly, ill-fitting & barely ass-covering) gown before. But the biggest part of my discomfort with all this, why I'm so flipped out, is that while I am out of commission, someone else has to take on the care of my son Jacob who is in the autism spectrum and needs a lot of supervision.
I am home, running the ship from my bed and sofa, but I have to keep a physical distance from Jacob, cannot be in the same room with him for long. His love of me is so physical and he is such a sensory seeker. He is used to hugging, cuddling, being as snuggled up against me as he wants to be. His favorite game is to climb into bed with me and have us both pull the covers up over our heads, make a little private cave together and giggle.
And while I want and ache to hold him close, his eight year-old, eighty pound body is so dangerous to me in its enthusiasms. Jake flails, he jumps, his arms splay, he playfully head-butts, and this will all cause me massive pain if it connects with my body; which it will if I let him anywhere near me.
So I have to keep my distance. And he does not really understand that Mommy is hurting, that he needs to barely touch. “Gentle, gentle” are words he loves, yet often then does the opposite. He is feeling sad, rejected, and yet this must be.
Others are taking him out, away all weekend, movies and museums, basketball games and bookstores. He is being kept very busy and I am resting. But still, he chose this weekend to want to engage me more than ever in his imaginative play, his playmobil cast of characters taking on new names and stories every minute or so.
"What are Steve and Marvin doing now, mommy?" asks Jake. And I can't for the life of me get down on the floor and cast off the pirate ship with him.
And while this will pass, as with each day I grow stronger, in less pain, those dark thoughts are coming because there is now a precedent, I have been given a glimpse of the future, that there will possibly come a time when I am no longer here at all to care for Jacob. And what, WHAT will happen then?
I have pushed all this out of my mind for years, just assumed that I am not allowed to grow old, infirm. But this week, the fear that I will not let myself think of pushes at my edges: who will care for him, take over for me if Jake should need a caretaker, an overseer for the rest of his life?
What will happen to my boy when he is no longer my sweet little boy but a large, probably foreboding man; when he can no longer rely on cuteness and charm to get everyone around him to pitch in, help out and also cut him a lot of slack?
Because what Jake will look like down the road is right now still anyone’s guess. I had always pictured Jake transformed, not exactly by magic but by some slower methodical process with the same end results: someone normal-ish. Vastly quirky but normal enough to get by; independent with a job, meaningful work, friends, maybe even love and family (I knew that was pushing it but wanted to set the bar high).
But lately other visions have been creeping in, mixing with the triumphant ones. Jacob, pretty much exactly as he is now, but full grown, and large. An adult Jacob who is just like 8 year-old Jake, but sized up. And that is a scary vision, because Jacob while smart and kind as the day is long, does not have enough practical knowledge of the world to live in it. He doesn't have anywhere near the capacity to make decisions and function on his own, doesn’t even seem to have the budding beginnings of these vital skills.
And yes I know that even in a worst case scenario, Jake will be growing up some more inside, and no I don't expect an 8 year-old to function like adult. But also I have a (sort of) typical 8 year-old at home, too, Jake’s twin brother, Ethan.
And while it would be harrowing and terrifying (and I would clearly never, ever do this), I have no doubt that if Ethan were to be taken and dropped off in a part of this city he has never before been in his conscious life? He could find his way home.
Ethan knows his address and phone number, he knows what neighborhood he lives in and has a sense of the rest of the city map; he knows how to talk to people and ask questions, to use a phone, to ride a bus, to catch a taxi, to go to police officers and ask for help. He would be scared, but he would figure it out. Ethan has practical sense and some street smarts. And these things are completely absent in his brother.
And I know that Jacob is growing and changing every day, that at this point I cannot possibly know where he will end up as a young man of 18, 20; when he is poised on the brink of what is adulthood for the vast majority.
But I also no longer have the (false) surety I had when he was a little guy, 3 or 4, and everyone around me was assuring me that his differences and delays were mere hiccups, bumps in the road of his development, that he would surely be mainstreamed by Kindergarten by second grade, by middle school at the latest.
Nothing could be farther from the truth. His differences are still vast, his processing still so off from “normal” as to make it questionable if he will actually ever be able to live on his own, independently.
These are the things that go “bump” in my night, the things that keep me up worrying, wondering. Usually I can tamp them down successfully, go about my day-to-day of being there with and for my son, working with him to grow and blossom forth.
But times like these where my life has been derailed, where I am thrown off my regular track, where I have both too much time to sit and brood and have had to spend hours setting in place plans so that Jake can get through a single day without me? These are not easy on my soul.
I have no answers right now, only questions. Questions that tug at me, and then I tuck them away, not ready to fully explore the answers. Right now I need to rest, to heal, to come back a little more each day to be fully with my family.
Besides, I’m never going to grow old or die, right? Um, maybe I need to re-think this some more. OK, someday, not today, I will.
Varda writes about "birth, death and all the messy stuff in the middle" on her blog "The Squashed Bologna: a slice of life in the sandwich generation" She also tweets as @Squashedmom. Varda is proud to be a Hopeful Parent.
I can so relate to this...and thinking about the future for my son. My husband does not share my concerns... not sure if I am overreacting or he is underrating. Maybe we need to meet in the middle. But at age 12 there is really only 6 more legal years he has to stay! It's what keeps me up at night.ReplyDelete
I can totally relate too. With two "typical" kids and one w/ASD squashed in the middle, I worry about this exact stuff. I know my youngest and oldest will always find their way, whatever way that might be. My middle guy? I have no idea. And that unknown is the scariest part of all.ReplyDelete
Now get some rest!!!
It is like you jumped inside my brain and wrote what is exactly in my thoughts. Your Jake sounds an awful lot like my daughter Maya and I have had more than one sleepless night worrying about the exact same things. I think they are very real worries and that there are no easy answers, we just have to keep going, keep trying to give our kids as much as we can and see what the future will bring. Not easy stuff at all, but at the same time what we can do is be there for our kids now and give them as much as we can.
Thank you for voicing so beautifully the fears of many of us. Take care and hope you recover soon.
This post gave me heart palpitations. I think this is the hardest question for any of us. Where can I get one of those paintings that ages instead of me?ReplyDelete
"Where can I get one of those paintings that ages instead of me?"ReplyDelete
Yes. The most awful question of all. I hope you heal quickly and live forever.ReplyDelete
This is such a beautiful heartfelt and well-written post. Thank you for sharing it. Like you, I worry too about the future and my ability to stay healthy to care for my children. I echo the others in saying I have lost much sleep thinking about it. I do however, have faith that as time passes, my son's path will become more clear, with hope for the future always. I hope you are feeling better soon and back to playing with your delightful son. Thank you again for your words.ReplyDelete
Thanks so much everyone, for your kind words. Seems so many of us share these midnight fears. And how could we not? We are parents, worrying about our kids' futures comes with the territory.ReplyDelete
@Stimey: Sorry about the palpitations, dude. And I'm with you - where can we get those special paintings? Although as I recall there was a pretty steep price involved. (Oh, yeah, my immortal soul... um, think I'll pass on this one)
Yes. I worry, too.ReplyDelete
I think I get a fresh dose when I help friends whose son is more severely affected and has, unfortunately, been underserved by schools and experts for most of his life. They are seriously considering group homes and still struggling with the school system.
I go home from these encounters more determined than ever to help my daughter learn all of those skills for independent living - but so much of it is unspoken and hard to teach, hard to translate to her interpretation of the world, which I don't always understand anyway,
It's also particuarly scary with the uptick of ASD - how can there possibly be enough resources to serve these kids as they turn into adults. We already see the effects on the school system, and that's only a portion of the day.
I guess we have to focus on getting through each day one at a time, but with our peripheral vision keep the future in mind - how can we prepare and what are the wise steps now that will make the future less uncertain.
Hi Varda! Thanks for reminding me of this post - I think I read it very early one morning and it sort of went straight to my subconscious and stayed there...Probably why I decided to tag you in my post!ReplyDelete
The best antidote to worry, as far as I'm concerned, is to look at the lives of autistic adults who, although they struggle (don't we all?) are reasonably successful and happy. I'm not saying that our kids will be like that, but that if we all play our cards right, they might end up being part of a community of neurodiverse people who look out for each other and understand each other's diffuclties. Because what I have no doubt about, is that despite what Baron-Cohen and co might say, autistic people are quite capable of forming meaningful social relationships, and empathising with others' troubles.
Another thing is that although Max apparently cannot do without me - for reassurance, cuddles, walking down the corridor and waiting by the bathroom door so he can go to the toilet, on occasions when I'm away, he's perfectly fine and relaxed. Of course it's probably not the same for other kids: they are all differrently able to make us worry, aren't they?