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.

 

 

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.

Try This on For Size: April is Autism Understanding Month

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Hugs stave off the winter chill during a bittersweet goodbye. See you in springtime.

 

First they called April Autism Awareness Month (many still do). I knew I was all too aware. Now they called it Autism Acceptance Month. I know I accept it well enough. But I’m still trying to understand a lot of things about Autism: why it’s such a wide spectrum and whether all of it is autism or just a conglomeration of neurological diagnoses that need be to be sorted out. I also accept is that it will take forever to understand. So that’s the work I am doing this month: trying to develop a better understanding of the things about Autism that still need work, in contexts large and small. I want to think out loud about the issues and questions that society ought to know so that families living with autism are not pitied, ignored or marginalized while we figure out where the many types of people on the spectrum fit, what their gifts are, and how they need help.

IMG_7953April is a good month for developing understanding – and patience. For those of us in climates where winter has us in a death grip, April is the time that we long for the warmth of summer and totally overreact to the emergence of any sign of spring (watching the snow and ice recede, camera in hand, looking for crocuses). April brings Easter (usually) and other rites of spring that signal optimism about the future. April reminds us, gently, painstakingly, that we have more capacity for joy than we thought after a winter in which our capacity for everything joyful has been sorely tested. April is hope. Let’s start with that thought.

Today is National Siblings Day. Isn’t Every Day? Okay, Maybe Not.

SONY DSCWho thought this day up? Hallmark? Well, it’s a good excuse to sift through the photos, and it’s amazing how hard it is to find a photo that includes everyone that captures the spirit of our brood and still preserves some privacy. I think I found it.

Siblings of autistic children don’t have it easy, and we do our best to recognize their challenges and build some rewards into the process of accommodating the necessary quirks of life with autism. Remember my movie post earlier this week? Access to movies, screens and electronic devices like iPods is exponentially greater in our house than it would have been without autism (I think). We’ve made more trips to the beach, given more nods to everyone’s food preference (a special diet for one person demands more flexibility for everyone, sometimes), and we’ve tried, not always successfully, to give everyone the spotlight at time when they wanted it (sometimes they don’t).

The hardest thing so far is giving each child space from the others when they need it to create their own identity. Sometimes it’s difficult for ASD people with a developmental delay or cognitive impairment to see a younger child grow past them, as it were. And siblings are not always diplomatic in creating the separation that’s necessary for them to grow up. It’s hard to do and hard to watch; everyone involved experiences frustration, anger and hurt. It’s typical for all families to go through this, but as parents it is much harder to keep ourselves from intervening than we expected – we are so invested in the idea of inclusion that we have to remind ourselves that our children need to prepare for a life apart from each other. If we give them the space they need now, we hope the bonds they forged when they were young will stay strong after the angst of adolescence has passed. That’s the idea, anyway.

Rocking Autism Awareness

Objects in mirror may be closer than they appear

Objects in mirror are closer than they appear

Many high schools in our area have a big rock on which students advertise the latest fad, inside joke, or activity. They scamper in after hours and paint the rock, and this week some of our enterprising seniors painted it up blue. It’s touching. Still, all I can hear in my head is the voice of Charlie Brown on Halloween night as he looked in what was supposed to have been his bag of candy and moaned, “I got a rock.”