Susan's Blog

Friday, September 30, 2016

It’s a Wonder That We Still Know How To Breathe

What’s good is bad, what’s bad is good. You find out when you reach the top, you’re on the bottom.

–Bob Dylan, Idiot Wind

One part of me that has yet to recover from Nat’s trauma is my own advocate persona. My own professional views. It is bitterly ironic to me that I wrote an entire book on Autism Adulthood, (see, I still can’t resist the plug) — but now I am stumped as to what to do for Natty at almost 27. He’s living at home and we are getting used to it and enjoying it. But is that okay? Shouldn’t I be making five-year plans and then lifetime ones? But I lay awake last night trying to figure out how we were going to assure his distant future, when we’re no longer around, and I came up with nothing. I’ve taken to scoping out young adults in our lives and sizing them up as roommates for Nat. But then I think, “What’s the rush?” But then I think, “What, we are still here at Square One?” and then “But the best laid plans…” and then “Shut up Shakespeare, you didn’t have an autistic kid.”

So how, exactly, do we do this? One friend of mine says that she has plenty of money, so her plan is to buy someone as her son’s forever caregiver. Another’s plan is not to die, and mine is to become a ghost and hover in his apartment.

These are not good plans.

Meanwhile, I feel a little sheepish when people ask me to give talks about Autism Adulthood. I feel like Didn’t they get the memo? I failed Autism Adulthood! I already have to rewrite parts of that book, for God’s sake. Was I smug? Did I give myself a keinehora? But I know I took great pains to say, “for now,” and other qualifiers about Nat’s Adulthood programs. I made disclaimers — I’m not a financial planner, a special needs attorney, an expert — but I did feel comfortable in my role as a mom who’d made it.

Now I am putting my strategies to the test. I do have a couple of service-providing organizations looking out for good group home matches for my Nat but that seems like a long time in the making. I guess I have to have faith and patience that things will come together but that is not at all advice I would ever give to anyone else. Faith and patience puts the whole deal in someone else’s hands and that scares me. That is not a good plan. Other people are not as motivated as we ourselves are when it comes to our children. That is simply a rule of nature.

So my life has become a mixture of living-in-the-present, enjoying a more mature Nat, a more mature relationship with him, enjoying being able to be assured of his day-to-day good health and outlook. But there’s of course that undercurrent of anxiety, potholes in the paved road, that make me feel all jangly and uncertain.

But actually, that’s just a good description of life. No guarantees, no real certainty, and especially no rose garden unless you plant it and tend it yourself. And of course, be ready for that harsh winter kill.

And then prune your ass off and get an even better plant in the summer.




You were not smug at all so don’t think that about yourself. You know how I look at it? It’s like writing a fantastic IEP. The entire document can be well thought out, perfectly written from a IDEA/legal standpoint including all goals and objectives needed BUT it’s only going to be as good as the people who are implementing it. Planning for adulthood is the same imo. You were responsible enough to plan very well for Nat and do all your research yet treatment is always going to be uncertain once those plans are handed off to staff whether it be in group homes, day programs, ABA schools or public schools. The frustrating part of the planning, whether it be at school level or adulthood, is that parents can have the best plans and services for their child yet somehow one person or a certain school or group home can unravel all of that. That is what is so worrisome and frustrating for all parents. When we hand our child off will they really get the services agreed upon? Will corners be cut? Staff will never feel the same way about the disabled child or adult like the parents do so will the effort really be as good as we want? Will abuse happen? As I said, you can plan and plan and plan yet those plans many times don’t equal what we envision for our child sadly. I also feel strongly that states (it happens in all states) investigate many abuse complaints and nothing is done. The law certainly never seems to be on the side of the severely disabled person due to, many times, the inability for the person to convey what happened.

— added by Chris on Friday, September 30, 2016 at 12:28 pm

Yes, it’s a process. No doubt about it!

— added by lisa clements on Friday, September 30, 2016 at 12:34 pm

Live in the moment, for sure. My son is 10 years younger then Nat. We are trying hard to embrace the now and not stress too much about the future.

— added by Di on Friday, September 30, 2016 at 4:20 pm

Failed autism adulthood . … nope. Now you need to write the “when it all falls apart ” book. Not the least flippant . Because it happens all the time . We think we finally get it sorted, get complacent and…. back in the mess we go again . It would be good for others to know they aren’t alone .

— added by Farmwifetwo on Saturday, October 1, 2016 at 8:12 am

Maybe a way to frame this is that Nat is a boomerang kid. Both my (typically developed) nieces (now in their thirties) boomeranged when they were in their twenties, each at a different time for different for different reasons. Actually, one of them boomeranged twice.

When they returned home, we were all a little distressed but in retrospect, those interludes did no harm and were even productive in non-obvious ways. Launching into adulthood is a challenge and sometimes a breather is needed. Now both have found their spots in the world and are doing wonderfully. I don’t see why Nat couldn’t end up with a similar story.

— added by Ohio Mom on Saturday, October 1, 2016 at 6:04 pm

You will find a good situation go him. I have no doubt of that. But the real question and concern is who will find placements that are right for him when you and his father are gone, or unable to intervene when things go wrong. Because as you have learned, things can go very wrong and without a watchful person who cares staying close to your son, bad things can happen and he cannot, will not communicate, nor can he extricate himself from the situation. That is the abyss so feared by those who love someone who cannot care for himself. All the pep talks, all the optimism deflates when that becomes the question left standing. The rest is just illusion. The answers to all of those questions fleeting and can go many ways. But that last one is forever the child lives

— added by Rebecca Yourig on Friday, October 21, 2016 at 6:16 pm

This is most likely the most important issue that parents of a disabled child has to face. The earlier family starts addressing this, the better, because an essential part of this is stockpiling funds; i.e. Saving money. Money gives you more options, more flexibility, and offers havens when things go wrong. What happens to people in our society who cannot take care of themselves after caregivers die, or themselves become disabled, is appalling and terrifying. Money alone is not sufficient but can be very important.

— added by Rebecca yourig on Saturday, November 5, 2016 at 9:58 am

I really enjoyed your books, particularly the one about adulthood. It was a book that needed to be written. I agree with the other comment above. You didn’t fail autism adulthood, you just suffered an all too common setback in our broken system, and perhaps you might want to think of writing another volume. Hang in there.

— added by Irene Tanzman on Thursday, December 8, 2016 at 6:22 pm