My son Austen* looks like most nine-year-olds, except perhaps a bit taller, with long legs that carry him swiftly across the ground as he races you to the car or the door of the house or the mailbox. He has curly brown hair, golden brown skin and painfully long, lush eyelashes ringing his deep brown eyes. When he flashes you a big grin -- as he does when he's thinking about something funny that happened at school or his latest high score on a favorite video game -- you see those new adult teeth that still look a bit too big for his mouth, like a young colt's. His fingernails have a tendency to be dirty, for the same reason the palms of his hands are calloused: from swinging on monkey bars and climbing trees.

What you won't notice immediately is his disability...

Read the rest at: http://blog.beliefnet.com/thinplaces/2010/09/perfectly-human-invisible-by-mary-p-jones.html

This, by the way, is the point at which blogging experts say you shouldn't blog. You should always put your best stuff out there and dazzle the Internet multitudes. But I say... Um... Ah, whatever. I don't have it in me to come up with a dazzling response to that either. So, here, my friends, are your bullet points:

• I was working on a guest post for a blog on disability and spirituality that I think many of you will love: Amy Julia Becker's Thin Places. The post won't be up for a week or two. I'll post a link when it is, but do feel free to poke around and get to know Amy Julia in the meantime.
• I've been working on my 1st Step, in depth this time, which has consisted of writing up a history of my life and relationships. I've used a lot of blog material, and it's about (gulp) 50 pages long, which is awful and fabulous. Awful, because I need to edit it down to about 8 in order to present it to my 12 Step group and fabulous because I started this blog with the idea of writing a memoir about my marriage and I've found I have a really solid foundation for that. When I read it to my cosponsor, she and I both cried.
• I have been celebrating! My husband and I have 7 years in recovery, and since many of you know that discovery and recovery happened when I was very pregnant with my daughter, you can probably guess that we've been preparing to celebrate the anniversary of Janie's birth. We've also been celebrating a sobriety anniversary for my husband, who has 4 years since his last major slip. Yay!

A few months ago, Mark and I took the kids to a "sensory friendly" movie showing.  Autistic individuals, and others with sensory processing difficulties, can find a typical movie going experience overwhelming.  Movies are loud.  Theaters are dark and often crowded.  The screen is huge and the images on it are flickering and fast paced.  There are previews and commercials before the show that switch rapidly from one theme to another, while we wait impatiently for what we actually came to see.  Then when the movie does start, its story and situations are designed to evoke strong emotional responses: to scare or thrill or amaze us.  And did I mention they're LOUD?

Most of us go to the movies to be a little overwhelmed.  But for some people, all of that can be too much.  So, at sensory friendly showings, there are no previews.  The lights are dim, but the theater is not dark.  And the sound is turned down.  And not only that, it's ok to sing or talk or to get up and walk around, dance or jump if it all gets to be too much anyway.

At the showing we went to, some kids got up and paced the aisles.  Some rocked in their seats.  Some grunted or chirped.  My son commented on the movie at full voice.  (Whispering is only for secrets.)  And we all had a fun day out doing something different while nobody stared.  Nobody glared.  Nobody shifted uncomfortably in their seats and made little "hem" noises in their throats.  The air didn't buzz with electric hostility.  And nobody had to worry that, at any moment, it might.

I don't know about the other parents in that theater, but I felt like I'd been able to put down a hundred pound weight.  The kids and young adults in that theater could all be themselves, and we all understood.  No one said anything or did anything, but there was a palpable sense of acceptance in the air.  It hung there, invisible but enveloping, like the drowsy smell of honeysuckle on a warm afternoon.  What a relief.  Which made me realize just how guarded I am and how much weight, how much fear and tension and worry, I carry every day.

This past weekend, I went to a convention for my 12 Step group.  Hundreds of sex addicts and their partners or family members gathered in hotel conference rooms and ballrooms.  There were meetings and workshops and outings.  There were speakers who shared their experience, strength and hope.  At each banquet iced tea was served instead of alcohol.  No one gossiped about the latest infidelity scandal in the media.  People openly shared their pain and their weaknesses and their gratitude.  And all weekend long, I had nothing to do but connect with my Higher Power in a group of people who was supporting me in doing just that.  All weekend long, I felt I had nothing to worry about and nothing to fear.

Again that love and acceptance enveloped me.  Again that hundred pound weight dropped off my shoulders. Again the relief washed over me.  And again I realized just how guarded I am and how much weight, how much fear and tension and worry, I carry every day.

On the last day of the convention, I wept with gratitude for the gift of having been there.  (If you were one of the lovely ladies sitting around a hotel banquet table with me on Monday morning at breakfast, yes, that was me crying and smiling at you all crazy.) We were asked on that last day if we had picked up any burdens that we wanted to leave behind, and I couldn't think of any.  All I could think was that I needed to try not to reshoulder the burdens I'd set down when I entered.

When my son Austen was two, my husband disclosed his addiction and spent a morning on the phone desperately looking for a marriage therapist willing to see us on a weekend. But once we had that appointment, having no family nearby, we had to spend another crazed interval looking for someone who could watch Austen while we went out. And I still remember how I, unable to bear speaking to anyone, I covered my puffy, red eyes in sunglasses and waved from the car, like a devastated celebrity, while Mark dropped Austen off with some friends of ours.

There's nothing like having your marriage almost fall apart to scare you into spending time working on it (and nothing like falling apart yourself to scare you into working on yourself). And thus began our own need for regular, reliable childcare. But where to find the right person? We've tried a number of methods, as have other friends with special needs children, and (without giving away any anonymity blowing details) here are some things that have either worked for us or for others:

• Post "sitter wanted" notices at local colleges, universities or training schools. Look for places that offer programs in child development, nursing, occupational therapy, speech therapy, psychology, etc. Students in these programs will be most likely to be interested in (and most likely to be skillful at) caring for children with special needs.
• Ask friends with special needs children if they know a good sitter.
  
• Ask your child's teacher or school for leads.
• Use a private nanny or sitter agency. Private agencies can sometimes help find caregivers for children with special needs. There are even some agencies who specialize in finding help for special needs children. Be sure to let the agency know what your child's needs are so they can help find the best match.
• Check for respite services available in your state.

The advantage of using an agency or service is that most will do some type of pre-screening in the form of: an interview, a background check, a reference check or some combination of all of these. (When hiring my sitters I make sure to do all of these, either myself or in combination with an agency.) The disadvantage of private agencies is the higher cost of their services, while the disadvantage of state or local agencies is that you may not have the same individualized choices available with your own search or a private agency.

In addition, some states subsidize respite care services for individuals with disabilities, so getting out may not be as expensive as you think. I was not able to find a nice, easy nationwide "who to contact" database, but a state Department of Health and Human Services or Social Services or a state agency dealing with disability services is a good place to start.

In the six years since that day when we dropped Austen off with friends for an hour to rush out to the emergency therapy session that started us on the road to saving our marriage and sanity, we have made an effort to go out kid-free (for therapy, meetings, religious/spiritual services or just date nights) once a week. So, we've had ample opportunity to try many of the methods above for finding sitters. We have had a number of wonderful sitters, who were with us for years and whom we've been deeply sorry to lose when they had to move on, and we've had some truly awful ones who didn't make it past the first visit. And we've found a method for finding sitters that works for our individual family. So, in spite of the fact that we lost a sitter recently, I do know that we have a very good process for replacing her.

Next up... Training a babysitter to watch a special needs child...

You may be thinking, "But what's wrong with featuring wheelchairs?" According to disability statistics from the University of California San Francisco, "Very few children (88,000, or 0.1 percent of the population under 18 years of age) use wheelchairs." And according to a study of the underlying health conditions of children using crutches and wheelchairs 43 percent have cerebral palsy, 12 percent have spina bifida, and 8 percent have muscular dystrophy. So, of those .1 percent using wheelchairs, an even small percentage are going to be the type seen on TV shows: kids whose legs don't work but are otherwise typical developmentally.

In their real lives, children are much more likely to encounter other children with autism, cerebral palsy (with or without a wheelchair), Down Syndrome, ADHD or even dyslexia than neurotypical children with non-functioning legs. Our family is friendly with several kids in wheelchairs, but we have yet to engage in a friendly game of wheelchair basketball or to look on in surprise when, after fun and laughter at the pool, a child climbs out of the water and gets into (gasp! I would never have guessed it!) a wheelchair. When my kids first spent time with them, I spent less time talking (to my daughter at least) about the wheelchair than answering questions about what it means why Suzy doesn't talk and what it means jerks her hands like that or why Bobby doesn't laugh when everyone else does. (Actually, my son was almost entirely interested in the wheelchair itself and not much at all in its occupant.)

Both of my kids have been able to accept and understand basic physical limitations quickly; but because we spend our days in a mix of autistic and neurotypical children, the ways people think, behave and communicate differently are topics we work on every day. I spend a lot of time having conversations with my kids about the different ways that people's brains work and the different ways people interact with each other and the world. And I find myself wishing, when we sit down together and turn on the TV, that the shows we watch could reflect true diversity: not just someone who acts and thinks and experiences the world exactly the way everyone else on the show does, but with wheels.