Turning 22: One Day More

The morning before the last day and, right on cue, the buds are out for the first time this spring.

He won’t be 22 for a few more days, but because of the April break tomorrow is his last day in the School District. The week is devoted to community trips to his favorite places – movies, zoos, museums. The staff, like us, seems a little bewildered that this moment has finally arrived. It’s hard to focus on the administrative details and preparation for the next environment; we are grateful to have found a place that not only has meaningful employment waiting for him, but people who are looking forward to his arrival. We may have worked for this outcome but it is still something of a miracle to all of us.

Following the instructions.

There will be challenges, but they are not the kind we can see from here. I see glimmers of anxiety. Last night I asked him to fill out the simple application form for the job training program. he was busy drawing and cast me a sidelong glance, saying, “I’m not very cheery about this.” He complained while filling it out but, as ever, was meticulous about it. Earlier in the day he was putting together a truck given to him by a thoughtful classmate. I watched him pore over the instructions – how many people do you know who follow the instructions from the outset of an assembly project? These gifts, these skills, are integral to his thinking. They will serve him well, always, and will help him make a place for himself in the world.

So much more to say, but I’m out of words. Transition does that.

 

 

I’m Repeating Myself About Scripted Speech

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Long before we had reliable scripts we had picture schedules.

Me: I’m going to take a shower.
Him: Carry on! (Pause) Do what you’ve gotta do, baby. (Pause) Was that the spirit?

I could almost hear him flipping through his mental Rolodex of proper responses.

I’m glad that scripted speech is finally getting its due in some quarters. It’s not that original speech is not valuable, it’s just that, in our experience, 99% of the time there is something to be learned from the use of scripted speech. It might sound random sometimes but it really isn’t. Even when it’s the same thing over and over (and over) it is still telling us something, if only that the brain is overstimulated and that a redirect is required.

And really, the rest of us use scripted speech all the time. The internet thrives on scripted speech. What is a meme if not scripted speech repeated endlessly? Clickbait headlines? Scripted speech. YouTube clips? Scripted speech. Pop music? Scripted speech. It can be the fastest way to get an important idea or emotion across. Still, I understand that the autistic person’s use of scripted speech comes from a different place and has more layers than our often lazy use of slang and movie references. It’s like arriving at the same destination via completely different routes; you’re glad you understand each other but don’t assume you arrived at your mutual understanding in even remotely the same way.

Anyone who tries to write for a living knows that it involves the selective use of scripted speech to hold the reader long enough for new ideas to break through. Original speech is the real challenge, and that is what good editing accomplishes. But I’ve also learned that if I try to edit my speech while speaking, it will make him intensely frustrated almost immediately. It is not only necessary that we understand his scripts but that we use them, when possible, to convey our own ideas to him.

I suppose my point in bringing this up again is that I find that even as I am more accepting of his use of scripted speech, it has now reached a point at which I am not sure if we have trained him or he has trained us in its proper use. After all these years it’s easier to identify the scripted speech and to know when it is leading us away from a happy place, but is it easier because we have been doing it for so long or that he is getting better at making his needs clear?

The challenge in this transitional period is to step back and see how obvious those distinctions might be to the new people who will soon enter his life. His current supports are so nuanced and so well established, we don’t really know how much work there is to help him master a language of self advocacy. This process of helping him maximize those skills is, I think, the key to a successful transition. It will be hard for me to step away from the role of interpreter. I’m already making a mental list of the phrases that signal anxiety and at this point I’m not sure if they are his…or mine.

All Muddled Up

Waiting for the fog to lift, literally and figuratively.

Waiting for the fog to lift, literally and figuratively.

More than the diets, more than the structure, more than the cognitive delays, I am flummoxed and frustrated by the sensory and auditory processing issues that come with our version of ASD. I was raised in a house full of voices and conversations, laughter and bickering, a barrage opinions trivial and and nontrivial.

While I require long stretches of silence I also crave conversation, and there are times when animated voices are something my boy truly cannot tolerate. Even conversation in muted tones can upset him if my sentences are not complete and he becomes furious with my “muddled up” speech at the merest hesitation mid-sentence. Go ahead, try it, try to talk in complete sentences all the time without pausing or correcting yourself partway through. It’s not always a problem for him, but it seems to happen a lot these days.

Keeping my distance.

Keeping our distance.

What bothers me most is that it is easier to have conversations when he is not in the same room and I hate what this kind of self-imposed isolation indicates. It keeps me from doing things I want to do with him, and makes me want to protect him from those situations that overwhelm him and make him want to stop the world – and me – from talking.

My April Fool

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There are many people who advocate for autism awareness and acceptance better than I.

As another April rolls around and so many campaigns go forward to integrate autism into our collective consciousness, I find that my greatest impulse is to share my undying admiration for my ASD son, who is growing into a delightful man. He is mercurial, goofy, meticulous, and single-minded. He is sensitive, intuitive, impulsive, and hyper-empathetic. He worries about death, separation and growing up.

Most of all, he is vulnerable. He is aware of a complex world in which many things are just beyond his reach and so craves sameness and routine. He wants those he loves to be always near him. The heavy mantle of trust he places on us is never a burden because within it is his precious heart that gives love so freely it makes us dizzy with delight. All his emotions are distilled down to their purest form, and there are moments when I am temporarily daunted and disarmed by the intensity.

He is, I have understood for many years, the embodiment of the greatest joys and fears of all humans. He is the precious natural resource we have been charged to preserve. We are honored by the task and hope to be worthy of it, and of him.

Autism Transitions: Parental Developmental Delay

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He sleeps on.

A boy comes home from a long day at Kindergarten, climbs into his mother’s lap and both fall asleep in the dwindling winter afternoon. That was today. Except the boy is 19 and he’s a Kindergarten teacher’s assistant. Still, his 5-foot-7 body folds into my lap as easily as a toddler’s, his head fits neatly in the nape of my neck and his sleep is as deep and blissful as an infant. When I close my eyes I literally cannot tell the difference in age, so complete is his ability to shift his weight and meld his body to mine. I have waited for this phase to end for roughly 18 years and miraculously, disconcertingly, it never does.

As we navigate the transition to adulthood, such moments become more poignant. He’s making it harder for me to let go by being such a perfect man-child.

Over the Christmas break I had to run to the Post Office one morning – I was gone for 20 minutes, tops. When I returned I was met by a flummoxed husband and my boy pronounced, very matter-of-factly: “Mom, Dad and I find life very difficult without you!” There was a medication question – I had forgotten to leave out the morning pills. If I had been out of town they no doubt would have figured it out easily, but my unplanned outing sent them into a tailspin and no one even thought to call me on my mobile. I suppose I shouldn’t be surprised that I’ve become such a fabulous enabler. The rewards of caring for this family are so epic that even when things are horrifying and dysfunctional they still make a good story.

After waking, tea with Panda. What part of me would ever want to miss tea time?

After waking, tea with Panda. What part of me would ever want to miss tea time?

Consequently, I’m doing a lousy job at making myself obsolete. As other women my age with kids the same ages as mine plan their next act I find myself trying to perfect the at-home game – which, under normal circumstances I was never very good at. My husband is a far better housekeeper than I am but he works and travels a lot – after 21 years at home I think I’m finally picking up a few of his good habits, but it really has taken that long. The good news is I can cook and I’m well-suited to dealing with the monkey wrenches autism keeps hurling into our lives. I’m grateful that my husband’s work allows me to focus on our family. Sometimes I allow myself to wonder what would have happened if I hadn’t been able to stay home. My boy would have survived but probably not thrived and I would likely have succumbed to some rural suburban mother madness (which is still possible). Maybe I would have revived my old career instead of trying to carve a new one out of the Internet, but even as I try to create new opportunities I can’t really bring myself to take my eye off that autism ball. Like the shoe that periodically came flying from the back of the minivan in years past, it has a tendency to smack me in the back of the head if I turn away.

So, yes, I am having trouble outsourcing my job so that my man-boy can be more independent, partly because he keeps me warm but also because I’m avoiding thinking about what else I should be doing. Even as I try to write on other topics, I am emailing job coaches and setting up meetings to create community networks for adults with disabilities. I’m tracking legislation and figuring out SSDI. I know what I do is making his life better, but I’m just not sure I’m ready to make his life better without me. I want to have it both ways, and I’m going to figure out a way to accomplish that. Later, after tea time, maybe.

Schooled by Autism: Lessons From Charlie Brown and Lucy

blog_lucy_footballI heard the familiar, beloved sound of Vince Guaraldi’s Peanuts music and then a voice from the study, “Poor Charlie Brown. He missed the football again.”

Dad asked, “What happened?”

“He tried to kick it and then he bonked his head.”

Dad insisted, “But why?”

“Lucy pulled it away.”

“Why do you think she did that?”

“I have absolutely no idea.” Then a long pause. He is a person for whom spite is literally impossible, I am pretty sure.

“Fear makes people do strange things.” And wisdom appears in the most wonderful moments.

The Miracle of Enough Sleep

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It is a breathtakingly beautiful early summer morning – sunny, cool, dry – and for once I do not have mixed feelings about being awake to appreciate it. I am not a morning person. Never was, never will be. I am awake because I have to be but I can also say that I have had enough rest. This is new.

Last Friday night I slept for 12 hours. I don’t think I’ve done that in the 20 years since I had my first child. We had an early dinner and I fell asleep on the sofa, moved upstairs to bed at 1am and then woke up at 8am. I was aware of bedtime routines and kisses good night but everyone seemed to know what they were supposed to do and follow through. After a week of 5-6 hours a night, that sleep was not only needed, it was transformative. I faced a busy weekend not with fantasies of a nap but with energy and enthusiasm and a sense of emotional flexibility that often just isn’t possible.

SONY DSCI thought about the parents who have gone for years without even those 5-6 hour nights I’m whining about, and I am thinking about them again this morning. Sleep deprivation plagues many people for many reasons. For those who are awake because they have a sleepless child who requires constant supervision, the exhaustion is complete and relentless. Even on nights when the kids manage to sleep through the predawn hours, parental eyes pop open anyway, expectant of the footsteps that may or may not patter down the stairs. Knowing that the child is asleep doesn’t mean going back to sleep for another hour or two. Usually, worry fills in until they do wake up. It’s a hard pattern to break.

For those of us who face the day bleary eyed and worn out, I hold out for the promise and possibility of the restorative power of sleep. We don’t create sleep deficits on purpose – many children on the autism spectrum have intractable sleep issues and keep parents up until all hours, and we use the few hours while our kids do sleep to do things they can’t get done when the kids are awake. It’s just as important for our kids that we are rested as it is for us – people who’ve had enough sleep have more patience and make better decisions. If you can find a way to accomplish that magic 7 hours of rest, it is worth striving for.  Jane Brody wrote an informative essay on the health risks posed by sleep deprivation – it’s good tool for advocating with family and caregivers to let you cobble together a longer night or a decent nap.

SONY DSCI can’t blame autism for my sleep problem entirely. My boy is a better sleeper than most; it is the other obligations (obsessions?) and the worry that keep me awake.  I enjoy the quiet, peace and dark of late nights. I love being awake when everyone else is asleep. Books and movies are more fun in the dark. For years I sat in the dark on the floor of my boys’ room, waiting for them to go to sleep. As much as that process was driven by necessity, worry and confusion, I genuinely loved those moments sitting (sometimes writing) by the glowing night-light and waiting for the steady breathing and gentle snoring that arrived with their slumber. By the time I tiptoed out, no matter how crazy the day had been, we were all in love again. I wanted to savor that feeling and not go to sleep right away myself. I needed some time to wallow in the normalcy of sleeping children and talk to my husband uninterrupted. Still, there were times when I konked out on the floor before they did.

One gift of adolescence is that it brings kids who sleep in, when school allows it. This break in our summer program leaves my boy in bed at 9am still asleep. I never dared to hope there would be a time when he would master a self-directed bedtime routine at reasonable hour and sleep in on a sunny morning, even with sun streaming through the skylight directly on his bed. It might not sound like a miracle, but in its way it is. It gives me time to write this, time to think up some structure for this unstructured day, time to appreciate the breeze though the open windows after a week of hot and humid weather.

Peace of mind and enough sleep – I don’t think I can have one without the other, and having learned this lesson (again) I am going to try not to forget it.

PS: This is my 100th post. Woot.

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