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1 May 2018

Autism Transitions: Full Nest

Turning 23

I didn’t mean to wait a full year to post, but I think I am glad I did. For many families turning 22 means an empty nest, but not us. Much of this first year has been characterized by a sense of relief for him that not everything is changing at once. I share that relief, wholeheartedly. As we prepare for our other children to leave the nest, I am admittedly grateful to know that this man will linger. I understand that we can’t let contentment morph into denial. I also understand that even typical brains aren’t fully developed until age 26 and so extending the transition process beyond 22 means we still need to continually assess the whole person and the whole picture, giving equal weight to the futures of his siblings. Our family is evolving and nothing is truly settled. We are not ready for the long term plan, and if the transition has taught us anything, it’s that planning ahead is an art, not a science. There are few absolutes, and in this political climate we can’t even plan on even the most basic levels of support for our man beyond the family unit.

Not for the first time, it occurs to me that I’ve built my life around this family and any personal ambitions I may have had pale in comparison to what has turned into a life’s work: this person who now stands before me, nearly grown. While I try mightily to extricate myself from the lives of my other children, he fits so easily into who I am now that he is in so many ways an extension of me, and I know my husband feels the same way. We, the three of us, are a single symbiotic organism and even when it is maddening it is also plain that I cannot breathe without them. I don’t think it will always be this overwhelming, but it the feeling that we are thriving together instead struggling to understand and survive is shot through with a kind of success that is difficult to describe.

That said, one year into the transition we are dealing with only a few of the issues I thought we’d face, establishing social connections and opportunities being the most difficult challenge by far. There’s a bit of waiting for the other shoe to drop, for sure, but the best part is that he is controlling the dialogue. So long ago I prayed for him first to be able to say yes or no, then to tell me if he had a good day, then to outline his fears and desires. I got all of those things and more, even as he remains as vulnerable as a preschooler. I still bask in the miracle of him becoming so much more than I was told we could have hoped – but my hope never waned, and never will.

 

13 April 2017

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.

 

 

31 March 2017

Turning 22: What’s for dinner? I have no idea.

Is there dinner in there somewhere?

When the going gets tough, I go grocery shopping. Too often. Usually my list has about 4 things on it, virtually the same every time: grapefruit juice, yogurt, pizza crust, vegan cheese. We always need those, but I always end up getting other things I think we need: paper towels, seltzer, dishwashing liquid, ice cream. Then I get home and realize that I’m only prepared for my husband’s breakfast and my son’s dinner.

That’s a problem.

So then, if I can pull it together, I think of one possible meal that will feed all of us – spaghetti, pork roast, steak, chicken. Then I need to decide which store will have what I want (I visit, on average, 5 different stores every week, three of them more than once) and spend an inordinate amount of time reading news and playing candy crush while I decide what time is best for me to make another store trip. I seldom leave the house specifically to grocery shop – tacking it onto another errand gives the illusion of efficiency when it is anything but.

It’s not always this way. There are weeks when I plan and shop for meals 4 or 5 days in advance. Part of it is seasonal – it’s easier to keep on hand and grill many foods that will suit everyone. At one point I got a farm share and was marginally successful at using up even the unusual foods that appeared in my weekly box (full disclosure: I nixed the kale).

I really can do this #threepizzas

I can’t blame the special diets because I’ve been doing them for so long I’m used to making 2 or 3 separate meals to meet all the criteria. If everyone is home and we all have pizza, I assemble three kinds: gluten-dairy-soy free, gluten-free with cheese, and wheat pizza with cheese.

So somewhere in my brain resides the capacity the plan, shop and cook meals without multiple random disorganized shopping trips. That part of my brain is just not operational at this time. In the early years after diagnosis (but before special diets) I think we subsisted entirely on hamburgers, spaghetti, roast chicken and grilled cheese. I don’t remember eating anything else (except that one Saint Patrick’s Day when I made corned beef and cabbage and key lime pie, which might have been the worst menu ever).

Years ago, a friend’s father was diagnosed with cancer and her mother spoke of standing in the market, unable to choose anything. At the time (I was SO young) I thought, “How hard can it be?” The answer is: really hard. My mind is occupied with other things and unless I haven’t eaten for two days (okay that never happened – more like 18 hours) food just isn’t a priority. It should be noted, however, that this doesn’t stop me from eating everything in sight in the process of not caring about food.

So the transition has hijacked the food organization section of my brain (along with other sections that have been hijacked by cable news, but I digress), replacing it with elaborate schemes to convince my husband that Chinese food from a place 45 minutes away is a really good idea. Except it’s not because he and I are the only ones who crave dried chicken with chilies and apparently we need to feed our children, too. For the record, they are all old enough to fend for themselves, but I kind of have a thing about feeding everybody in my house, whether they live here or not.

I’ll be glad when spring comes and the transition ceases looming and starts being. The uncertainty about what exactly will not go right – because it can’t be perfect – will be replaced by real successes to be enjoyed and real problems to be solved. I am overwhelmed by not knowing if what we have planned is indeed what we should have planned. Did we make the right choices? Talk to the right people? Ask the right questions? File the right paperwork? Are these the right services? Will we lose funding? How can we possibly thank everyone who helped us over the last 18 years? Who will stay in our lives? Who will leave? Will his feelings be hurt? Will he find new friends? Will we? Should we? Are we too isolated? Once I let one question in, all of the others come galloping in behind it, and most of them have no answers other than to wait and see. I hate that.

In the meantime, I have to go and sort through the groceries I bought and see if there is any dinner in there. Chocolate chips and parsley, anyone?

9 January 2017

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.