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

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.

3 January 2017

Waking up in the Dark

It’s January for real. School program is back in session. We wake up in the dark. Without my permission, my mind now looks at every routine as something that will change soon, and weighs whether that is a good or a bad thing. At 6am, everything is a bad thing…except then I realize maybe 6am won’t be the wake up time any more. File that one away. For no particular reason I am glad the Christmas lights are stored away. Nothing more depressing than Christmas lights after Christmas.

The phone rings. The driver reports that the street is too icy for the van to come any closer. We can’t even see the van or its headlights. Winter, by New England standards, hasn’t even gotten started yet and we have had more van troubles than even the epic snowstorm years. There’s already been one morning when a crew was required to get it unstuck. It’s considered safer for us to walk down the icy street in the dark than for the damn van to try and make it to our house on our road, which is newly paved but was poorly graded when the street was built. The current driver is risk averse but very nice, and he inches the van into view so his headlights can light the way. The designer of the Econoline van clearly lived in the south, because they could not perform worse in winter conditions and yet we all pile our precious people into them. “A tin can on wheels,” one of our more adept drivers calls them.

In previous years we have had braver drivers, better vehicles and a more attentive and skilled plow company. We can only hope that next winter brings better transportation arrangements, but the odds are very much against it. Adult transportation services in semi-rural suburbs such as ours are practically non-existent. It is a bureaucratic and funding quagmire that is legendary among bureaucratic quagmires. I attended a transportation conference last spring that was designed to address just this issue – in the age of Uber and Lyft surely someone is looking at the big picture. Um, not exactly. Regions, cities and towns are coming up with their own solutions, some better than others. Still, the conversations are happening and many experiments are underway. My job is to figure out where our town is in the process and try to move things along, as it were.

It doesn’t look like the driveway from hell, but to some it is exactly that.

Out and about on this rainy, icy, miserable day, I see an older woman making her way down a treacherous sidewalk. She is wearing a heavy wool coat and has a plastic rain scarf on her head, the kind that unfolds like an accordion. She’s pushing a wire shopping basket. I feel guilty zipping by in my warm car as she bumps along, and I wonder how people find themselves so suddenly in her shoes, in the rain, in the cold and it strikes me that I know exactly how that happens and that this is why I am obsessed with the transition. But this particular person strikes me for another reason. Even though I cannot see her face, I have known and been curious about women like her – kind, patient and determined. I think of one from my childhood in Iowa, Evelyn, who was a nurse who survived the Bataan Death March in 1942. She haunted the back of our church and brought our family bags of walnuts she had gathered from her yard. When the Beatles released Eleanor Rigby, my mother said the song reminded her of Evelyn. She is one of so many people I wish I had been brave enough to know better.

In the meantime, I resist the urge to ask my teenaged companion if he wants to live in this town forever (I know that answer anyway), if and when we should sell the house, and whether he really needs to go away to college. For once I am grateful for the Metallica blasting from his earbuds.

Breathing deeply, I remind myself that we can only make one decision at a time (mostly) and that no decision can or will last forever, so I should stop planning for decades and settle on planning for months. I’ll never stop thinking about the decades but for now just getting home and having lunch will have to suffice.

Getting home and having lunch. Sounds like a routine we can keep.

4 April 2015

Getting Help in Massachusetts: Enhanced 911 Silent Call Safety Procedure

We just learned about this, and we are sharing it as part of the increased awareness campaign for April. If you don’t live in Massachusetts, contact your local police department and see if they have a similar option.

The Silent Call procedure is a unique program in the Massachusetts Enhanced 9-1-1 system that allows a caller who is unable to verbally communicate their emergency over the phone to receive the appropriate response.

If you need to call 9-1-1 and you are unable to speak for any reason, such as a physical disability, domestic violence or home invasion, follow these simple steps using a touch tone wireline telephone or a cell phone:

FIRST DIAL 9-1-1

Once the call is answered, indicate your need by pressing the appropriate number on your telephone.

IF YOU NEED POLICE: PRESS 1

IF YOU NEED FIRE: PRESS 2

IF YOU NEED AN AMBULANCE: PRESS 3

The 9-1-1 Dispatcher may ask questions that require yes or no answers.

PRESS 4 FOR YES

PRESS 5 FOR NO

22 January 2015

Autism Transitions: Parental Developmental Delay

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?

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.

27 October 2014

Saturday Moment: Halloween Prep in Sodor Brings Some Surprises

He’s on a roll with drawings and decorating, and today the trains need Halloween prep. I never fail to marvel at the focus and precision he brings to these projects, which are totally his idea. Add to that he has positioned himself right in the middle of our own project of reorganizing part of the basement – we are working near and around him, going back and forth, calling to each other and generally making a racket. He is unperturbed. Add to this list of potential antecedents my request that he move part of his train set temporarily so that I can clean out and move a cabinet that holds various frames, craft supplies, toys and videos. I don’t really want him to see the things I intend to give away, but have already decided that I won’t give away anything he wants me to keep. We have finally learned to pick our battles.

I can tell he doesn’t want to move the train tracks out of my way, and I am prepared for him to declare that I am an Onion lady who is too full of organizing. I wait a while to let the request sink in and focus on something else. Then he materializes in front of me, holding a box of videos: “I’m too old for these.” They are Richard Scarry ABC and counting videos. They are my favorites. But I take them and set them aside with the other “give away” things.

Then he appears with another box of videos, classic Disney this time. “We have all of these on DVD, which is more efficient.” Then I realize that, rather than move the tracks or allow me to navigate around them (which I couldn’t – I’m such a klutz I would definitely step on them) he is carefully removing everything from the cabinet himself.

So while he was constructing Halloween decorations for his trains, he was also making decisions about growing up, and managing change and doing it all beautifully, meticulously, and offering up explanations along the way. A task that would have been frought with emotion and behavior management (and that in younger years I would probably have attempted in the middle of the night or while he was somewhere else) had evolved so peacefully I almost didn’t notice – until I realized that he was having an easier time parting with things than I was (you don’t want that 12-foot train puzzle that you put together a thousand times, really?).

Not so long ago I wondered if he would ever grow out of some things and I concluded at the time that it didn’t hurt to wait. It’s not always true that all things come to those who wait, but on this day it is. As I was reminded by him more than once this week, “Patience is a virtue, Mom.” True, that.

13 June 2013

Developmental Dilemma: What To Keep

Part of me thinks that no one should ever have to outgrow Toy Story.

Ever since the 18th birthday earlier this spring, I’ve been in a state of emotional turmoil. It’s only a slight exaggeration. Now I try to make some sense of a teenager’s room that runs the gamut from Winnie-the-Pooh to Scooby Doo with everything in between. It’s a collector’s dream and a parent’s nightmare. I’ve learned the hard way that throwing the wrong thing out means I will be hounded eventually to replace it – it could be five weeks or 5 years from now, just long enough to make what cost me $1.99 in 2003 now cost $67.99 on Ebay today. I know parents who have purged their house of everything Thomas and Pixar to help their kids become adults but my problem is that I really am loath to replace Toy Story with the Man of Steel. To me, that’s just another kind of arrested development. More importantly, he’s not interested in that stuff – he sleeps soundly through superhero movies on a regular basis. He loves what he loves.

And the books. Which ones will he ever read? How can we know what will prove useful or interesting, just by waiting patiently for him to notice the ones placed where he sees them every day? To get rid of the easy readers seems mean, to get rid of the more advanced books seems pessimistic.

Will he look beyond the action figures to the books behind them? Maybe.

Downstairs are the bins of paperwork that requires filing or tossing – one for school, one for insurance, one for general ASD stuff, one for transition, one for keepsakes and artwork that show developmental progress, or the lack thereof. But I only end up weeding things out I know are redundant – I just don’t know when a school or a court will need to see what we have and I’m afraid to get rid of something that could be a key piece of evidence of … I don’t know. And every bin or toys or papers brings a flood of memories and emotions that don’t want to stay on the shelf where I keep them. I am trying so hard to focus on the future that sifting through the past seems like a bad idea just now.

So I guess I’ll stick with The Wizard of Oz and The Sound of Music – at least they are live action – and wait a bit longer for the moment when we can at least move some stuff up to the attic. And we will know soon enough what schools, doctors, agencies and lawyers require and then, maybe then, we can let go of at least some of the past.

Remember Cats versus Dogs? They’re all in here.

22 April 2013

The April 15 Post That Wasn’t

I was almost ready to publish a post on April 15. I just needed to load the fox photo. But I had an appointment, and on the way home the news on the radio changed everything. Bombs going off in my adopted city on a street I used to traverse every day. I’m still processing the bombing and all that happened in the days after – me and millions of others. So, after today’s moment of silence I returned to the post I wrote on that day, a day that was already profound for me, even before 2:50pm.

A Different Kind of Marathon.

April 15. Boston Marathon Day. Tax Day. Halfway Point in Autism Acceptance Month.

I bailed on posting every day this month, obviously. Priorities change, and with so many people saying so many things about autism, if I am going to add to the noise it had better be worth it. But on this marathon day there is something to be said about the value of pacing yourself when facing the long haul of parenting. I’ve been following a thread online in which parents share their strategies for separating from their kids for personal time, shoring up their marriages, and finding ways to talk about things that aren’t autism (it’s harder than you think). That conversation follows a number of pieces I’ve read lately in the mainstream media where people without children feel the need to weigh in on the foibles of those who do have children. Too much time on your childless hands, Mr. Bruni? If people without kids are irked by people who talk about their kids a lot, imagine the pique in those who find themselves surrounded by the misplaced angst of parents struggling with sports team playing time or ivy league SAT requirements. And it’s not so much pique really as it is having absolutely nothing to add to such conversations. It makes a better listener and people watcher out of me, for sure, but as the years go by whatever skill I had for small talk sort of waxes and wanes with wherever we are with our boy. Sometimes it seems to have atrophied and I almost don’t trust myself at parent functions for my typical children anymore because the urge to say something truly inappropriate (but funny, I assure you) is almost overwhelming. It’s like the vegan invited to an event at a steakhouse – just because the parameters of your life are different you don’t get to ruin it for everyone else. If it bothers you that much, stay home, right? Wrong. Choose events wisely, but go, and bring your empathy with you.

***

So, I left writing this post to do work things and then I checked back on the parenting thread I was talking about, and was validated and educated by what I read there. People have made some hard choices to keep balance in their lives and create independence for their children. It made me think, and so I went and sat in the rare spring sun to contemplate the long-term plan. Out of nowhere (kind of) appeared the boy. He wrapped his arms around my head, kissed it and said, “Are you worried about something?” He wedged himself into the chair with me, leaned his head on my shoulder, and twirled the hair at the nape of my neck with his fingers the same way he did as a toddler. I couldn’t answer him. We heard a door open – saved by the Dad, taking a break from work. We scrambled upstairs and while I crossed the room to talk to Dad, the boy looked past us out the window and pointed (now he points!):

“Baby foxes!” He spotted them – four in all – scampering about, camouflaged almost perfectly against the oak and maple leaves. We would have been too preoccupied to notice, but we found ourselves checking in on them all day as they wrestled and napped, waiting for Mom to come back to the den that sits just up the hill from our house.

He feels ahead of me, he sees beyond us. We have a lot of thinking to do.

I Wouldn't Have Missed It

Notes on a life punctuated by autism

adult services