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

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.

"Worry Brain, your mama's so ugly, she makes onions cry!" I found myself saying after I got off the phone with my husband.  I had to hang up the phone because I'd burst into tears, and now I was trying to beat back the anxiety that was consuming me.  I'd read a book on helping children cope with anxiety that suggested we learn to mock the part of our brain that produces those irrational, anxious thoughts.  As a feminist, sometimes I worry that I shouldn't use ugly mama jokes on it, but then I remind myself that's probably just my Worry Brain trying to get out of having its mama called ugly.

The company Mark works for is on shaky ground.  There have been layoffs and the people he knows that have been let go have had a hard time finding new jobs.  But I wasn't worried about that.  I was worried because he had a job interview.  For a really good job.  That pays a lot more than what he makes currently.  Working in an industry he's really interested in.  And the interview went well.  Crazy to be worried about that?  The job is (gasp!) in another state.  We'd have to move.  And the thought of that level of change grips me with anxiety.

I started whirring right into a panicked overdrive, "Fine.  I'll just tell him he can go, but I'm staying here with the kids.  I can't believe he'd pick a job over us!  And if we're not there, he'll probably just go on an incredible acting out spree.  He'll pretend he's not married and have sex all over some new town.  But I can't move, can I?  It took a year for Austen to be able to sleep through the night the last time we moved, and we stayed in the same area.  We'd have to find new 12 Step meetings and new doctors and new friends and a whole new set of resources for Austen.  And for crying out loud, we are a mixed race family and I look like a crazy bohemian.  We can't just move anywhere.  People will burn crosses on our lawn and the neighbors will tear the Darwin fish off my car and kill us.  We're safe here.  Everything is familiar here.  Everything is under control here."

That's when I brought out the big guns and called my Worry Brain's mama ugly.  (I mean she had to be ugly.  She was a big slimy brain, right?)  Mark still has a job.  He hasn't lost his job.  He hasn't been offered a new job.  Even if he were offered the job, we'd have time to discuss it and decide what's right for our family.  No need to try to soothe my anxiety by jumping on the computer and spend the next two hours doing Internet research on school districts a thousand miles away (although I was sorely tempted to), not when I can use my prodigious recovery skills to stay in the moment and tell myself ugly mama jokes instead.

When my son was first born, I actually spent some time doing that thing that we stay-at-home moms supposedly spend our lazy, bon-bon eating days doing: I watched television. Now, I know, folks who haven't actually been stay-at-home parents to a colicky infant -- whose poor little nervous system hated the bright, loud world outside the womb -- have this image of what it means to stay at home and watch TV all day: comfortably clad in pajamas, with feet up and snacks and cool drinks within easy reach, the idle mom flicks through television channels weighing the merits of Oprah vs. Ellen, a rosy baby sleeping peacefully in a bassinet somewhere. So for those folks, let me set you straight right now. That ain't how it goes. And believe me, I wanted that to be how it goes. Why do you think I signed up for this whole Mama gig in the first place?

Those days I spent watching TV have this blurry, disjointed dream quality in my memory. Were there multiple days? Or was it all one long day? I think it's really all a single day, months long, in which I'm never really awake but also never fully asleep...

I doze for an hour here and there and then gaze out at the world through glazed, foggy eyes for a few hours before nodding off again. I'm some weird, ironically life-giving combination of a vampire and those red eyed soldiers in the movies who've been subjected to some experiment that takes away their need to sleep in order to create the perfect killing machine. The curtains are always drawn whether from migraines or because I'm nursing. The baby only consistently stops his piercing screams when I'm nursing, so I'm almost always nursing. Some days I just don't bother to put on a shirt at all; I walk around in huge, industrial nursing bras leaking milk like a giant cow.

When I put him in the bassinet, he screams like he's on fire. I haven't showered in days. I'm too exhausted to get anything to eat or drink, and besides, if I move, the baby will wake up and scream. It's like sitting with a live grenade on my lap. I haven't slept more than two hours at a stretch in weeks, maybe months. The TV is my constant companion, full of adult human voices that distract me without demanding any mental energy. I long for the day when I can stop watching reruns of Law and Order (every last incarnation of it) and what? Grocery shop? Vacuum? Do dishes? It's all a treat. Really.

Now that the kids are older, I rarely watch TV. When they are around and awake, I don't want to watch the kind of awful crime dramas I like to watch. And when they are asleep or off at school, I have, well, all those years of things to do that didn't get done when the kids were smaller. Just the other day I was cleaning out my closet and found half-written thank you notes for baby gifts. My son is eight now, people, and my daughter is five. I'm a little behind. But I would like to live out that fantasy of just kicking back and watching TV. I don't know. Maybe today. While I'm folding laundry. And finishing those thank you notes.

Just as we've found a method that works for us for finding childcare for our son Austen, who is autistic, we've (slowly) developed a method for training our sitters so that the visit goes as smoothly as possible both for our children and the sitter. Needless to say, that doesn't always work, but it didn't take many unpredictable, colicky, newborn days with my son to realize that all I can do as a parent is increase the odds of success, not guarantee them.

Step one begins before the babysitter walks through the door. I schedule new sitters' visits for a day on which Austen knows that Mark and I usually go out for a date or a meeting. Sitters are aware prior to arrival that Austen is autistic (I tend to pick sitters who already have some familiarity with autism) and they are also informed as to how he prefers to be addressed. (New people make him nervous, so it helps if I can get them to placate him right from the start.) Of course, Austen also has to be informed that a new sitter is coming, and -- much in the same way I handle the dreaded doctor's visits -- I prefer to tell him about ten minutes before the sitter's arrival. This gives him a little warning, but not enough time to work himself into a panic (or a frenzy of excitement). He is almost always thrilled to hear that a favorite sitter is coming and almost always despondent when I tell him someone new is scheduled to arrive, but I've reminded him so often that his old favorites were once new too, that he will sometimes repeat this mantra to me before I do.

When the sitter arrives, hm, I'd like to say that I'm well prepared and welcome them cheerfully into my orderly home, but I think I come off as flighty, at best, as my own overtaxed system is pulled in a thousand different directions by competing demands. That's why I have it all written down. So, I don't have to think on my very tired feet. Some people have emergency phone numbers posted in the house, I leave sitters with a reference manual and a house labeled with post-it notes. I may talk at the sitters in a scattered way until their eyes glaze over, but like an instructor doing a quick introductory overview of detailed course material to come, I leave them with documentation: a textbook, a course outline, notes.

Want to know everything from my kids' bedtime routines to how to work the television? It's written down and posted where babysitters can access it. Training is a walk through the house, with guide book in hand, as I point out the little snags that may come their way: "This is the kitchen. Beware the microwave! Although it is necessary for food preparation, it is also a source of OCD rituals, as detailed in the affixed post-it. Here is the bathroom. Be aware that children may enter this area fully clothed, but leave naked from the waist down. A verbal reminder is sometimes sufficient, but the visual cue of pants themselves may be necessary. Consult your manual for details. This is the kids' room. This light must not be turned off under penalty of death. Note the post-it. Also, do not lose the lovies. I'm showing them to you now. Memorize their plush faces, monitor their movements at all times and guard them as if they were another child, for there is no sleep without them. I've documented a harrowing tale of terror called 'The Babysitter Who Couldn't Find Gigi' for your edification." That's all slightly tongue in cheek of course, but only slightly. (She says, slightly tongue in cheek yet again. Or not.)

The most common comment I receive from new babysitters is "Wow, you're organized," which I always take as code for "You're a completely insane control freak." (Although when Austen melts down, Mama's careful prep work starts looking a whole lot less crazy.) Once sitters complete the initial tour, I leave them for a while to get acquainted with the kids while I putter around. After all parties have successfully survived the orientation and getting to know you phases -- if all is mutually satisfactory, and if my gut check checks out (I always trust it) -- we're ready to try leaving them, instruction book and emergency cell phone numbers in hand as we head out. Given the amount of time that goes into finding, training and getting everyone used to each other, I try to cling to the good sitters -- the ones who quickly get him without the guide book -- for dear life.

And of course, all of this reminds me: we have a new sitter coming, and given the meltdown that led to the last sitter's departure, I know my manual needs revising.

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...

It's been a while since I've posted an update about the case of Alex Barton. Alex, who has been diagnosed with Asperger's (a form of autism), was voted out of his kindergarten class last spring after his teacher, Wendy Portillo, became frustrated with his behavior. She decided to discipline him by asking his classmates to state what they didn't like about him and then took a vote on whether or not Alex should be allowed in their classroom. Alex was voted out 14-2. The St. Lucie school board suspended Ms. Portillo for one year without pay, suspended her teaching license and revoked her tenure status. She is currently in the process of appealing this decision.

As for Alex and his family, they are grateful for the support they received and are currently keeping busy forming a chain of connection to other kids on the autism spectrum through The Tie Dye Project.

Alex has tie dyed five shirts and is mailing them out to other children with ASD and related needs. When a child receives a his or her shirt, that child will then make five shirts of their own to send to five other children with autism.

The project still need participants. Teachers are encouraged to take part in this effort as well. If you would like to participate in the Tie Dye Project email your contact information to Melissa Barton at mommyofalex@justiceforalexbarton.com or visit Alex's blog at http://blog.justiceforalexbarton.com/ for more details.

I started my day off on Tuesday by reading Lisa Belkin's reflections on what she's learned in the eighteen years of parenting since her son's birth. I thought, "Wow, that was lovely and touching and resonated with me in so many ways, I can't wait to share it. But... There's this one thing she just got so wrong."

A few weeks ago, I read Karen Maezen Miller's Momma Zen and I thought, "Wow, that was lovely and touching and resonated with me in so many ways, I can't wait to share it. But... There's this one thing she just got so wrong."

That wrong I was thinking about were their comments on feeding their children. Karen writes, "Left to their own impulses, children will certainly put food in its proper place." And Lisa echoes, in her own way, "An otherwise healthy child, if food is made available, will not starve to death — so chill."  Of course, what they got "wrong" wasn't really about food.  It was the same thing that all parents get wrong in my book: having a different experience with their kids than I had with mine.  (How dare they!)

Like so many other parents, they have expended their share of parenting energy and stress upon feeding, only to find it was natural for their children to eat when hungry, something that can seem like a remarkable surprise when one is caught up in the heat of battles over food. So, they share their experiences, and offer comfort to the new parent still struggling, and in the process, thousands of parents of typically developing children breathe a sigh of relief and let their shoulders drop away from their ears. It's easy! There are things that children learn naturally. We don't have to teach children to eat or walk or talk. They can figure it out if we just relax and let them.

And in a way this isn't wrong at all.  I witness this miracle every day in my daughter: the naturalness of eating, the naturalness of hunger and an urge for survival that overrides the most stubborn urge for Cheetos or ice cream. When faced with an empty stomach, she eats. She eats what she's comfortable with, and what she's comfortable with is most things. She trusts food. She trusts her body. I didn't have to teach her that. (Which is good, because I'm the one teaching by example about gluttonous consumption of sweets.) But it does seem to be a miracle, just like the fact that she was born with all her limbs and all her organs, with everything in place and working at a balanced norm. It's the kind miracle I've taken for granted at times, but still a miracle.

But I also witness -- daily -- a different kind of child entirely: one for whom those same natural things, like eating and talking, didn't come so easily.  As an infant, and even now, Austen was, by most measures, in excellent physical health.  He has all his limbs and organs, and they're all in perfect working order.  He's always been tall for his age, and an ideal weight for his height.  He sat up and rolled over and walked in perfect sync with his typically developing peers.

Eventually a speech delay that would signal to our pediatrician that all was not typical in the workings of one organ -- his brain -- but even before children are supposed to be able to speak, they are supposed to be able to eat.  Pictures abound of delighted babies digging into their first birthday cakes.  But we don't have one of Austen, who by age one was already refusing new foods.  His relationship with food, his willingness to literally starve himself rather than eat or drink a food that was new or was presented in an unexpected manner, was the first clue we had that his brain worked differently.  And in the end, it was the fact that he was his limited diet and obsessive rigidity around food -- not his delays in speaking or interacting with his peers -- that snapped me out of my denial and convinced me that Austen was autistic.

When Lisa and Karen share their experiences, their words are a relief to thousands of parents.  But to thousands like me, they can feel like an indictment when the words are turned on their head by a pediatrician or a school psychologist or another well meaning mom who clings to the belief that it's so natural for all children to eat that symptoms of eating disorders are seen not as a sign that eating does not come naturally to this particular child, but as a sign that you as a parent are overreacting or doing something wrong to interfere with the child's eating.  So, I share my story (over and over again) to bring relief to a whole different set of parents, the ones who know that eating and walking and talking don't come quite so effortlessly to all children, the ones who know that sometimes they don't come at all.

To those parents still struggling with mealtime, I leave you with something else from Lisa's article: "When your gut tells you they are sick, or something’s wrong, they are and it is."  We may not have had the same experiences feeding our children, but on trusting our own knowledge of our kids, I'm with both Lisa and Karen, start to finish.

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.

We faced a major crisis recently: I couldn't find one of my son's shoes. And his shoe was not just missing, but missing at the worst possible time: moments before the bus was due to arrive. Now, it's not that Austen doesn't own other shoes; he does. But they are not his "going to school" shoes; those other shoes are his "playing somewhere in the immediate vicinity of our home" shoes and his "dressing up" shoes.

"Uh oh, I can't find one of your shoes, buddy. Do you know where it is?" Now this is a bit of a silly question, as Austen always takes his shoes off in the same spot by the door every day and then those shoes don't leave the house until the next day. Yet in spite of that, there was only one shoe there.

"I don't know," he answered, and then followed up anxiously with, "Which shoe is it? Which one? Left or right?"

"Um..." I quickly glanced at the shoe that hadn't gone rogue, "Right. The right shoe is missing."

"Oh." He seemed relieved to know.

"The bus is going to be here any minute. If I can't find the shoe, you're going to have to wear one of your other pairs."

His face immediately fell, his lip quivering. He jumped up and down in place, then started pacing. "No, no, no, no, no." He was trying hard not to cry, "No. I have an idea, Mama. You could tell the bus driver that we can't find my shoe, and then I can stay here until we find the shoe."

He was working so hard to come up with a solution, but if the shoe wasn't where it was supposed to be, who knows where it was? My mind started racing. Maybe I accidentally threw it in the trash in some kind of spaced-out, sleep-deprived stupor? Maybe Austen's sister (who has been watching Wall-E on DVD practically non-stop) took it somewhere, filled it with dirt and planted a seedling in it. Maybe space aliens took it! Maybe it was stolen by the mom of another autistic child who refuses to go to school until his missing right shoe is replaced with an identical shoe.

If I had to find the shoe first, Austen could miss most of the school day, especially if I had to track down space aliens. And that would mean no uninterrupted, kid-free time for me to do those lazy, luxurious things we stay-at-home moms do without the kids around: laundry and dishes. This wasn't just looking serious, it was looking grim.

Then I heard the bus pull up. (Shit!) So, I did what any good mother would do. I knelt down so that I was at eye level with Austen and said, "Buddy, you're going to have to wear your play shoes. I know you can be really brave..."

With tears in his eyes and panic in his voice, Austen started backing away from me saying, "No, no, no..."

But I cut him of swiftly and hit him with the coup de gras as I blurted out, "And if you are super brave and wear different shoes, I'll buy you a brand new Wii game after school!" (Nice.)

"Family Game Night?" he asked, clearly weighing the game against the horror of the wrong shoes.

"Whatever you want." (Please let the bribe work, please let the bribe work, please let the bribe work...)

"Ok," he said, shakily. (Yes! I can't believe I'm going to spend money on a Wii version of Battleship and Connect Four, but still yes!)

So, Austen put on the shoes and walked on his toes out to the bus, apparently wanting only the smallest possible portion of his feet to touch the ground in these offensive shoes. Then he paused a moment before slowly extending a tentative toe toward the steps. The moment he was safely in his seat, I let out a sigh and felt my shoulders drop. Then I rushed back inside, where I spent the next two hours look for that right shoe. I eventually found it wedged under a corner of the sofa.

When Austen got home from school, I asked him how his day went in the wrong shoes. "Ok," he said, "But everyone was staring at me all day because I was in different shoes." And in a class full of children who take notice of a multitude of tiny details that most of the rest of the world ignores, they probably were.