Saturday, June 02, 2007


This is one of my favorite pictures of my Joey.
The image is one that I draw up when things get especially hard. When we've had a screamy day and the school people are blowing me off and ETS isn't giving me enough work to pay the bills and friends are in troubled waters and the world seems to be spinning a little faster than usual. I've mentioned this picture elsewhere, on occasional comments on other blogs, it seems to be getting mentioned a lot lately. So here it is. The Image.

The large, round one is me. That's me, writing my dissertation. And that's my baby boy, fast asleep on me. He loved to sleep on me. He still likes a good snuggle.

When I was writing that dissertation, my world was very different. I knew where I was going and how I was going to get there, more or less. I had trained hard to be an academic. I would spend lovely jaunts in India looking at wonderful sites and objects, gain an understanding of how people lived, communicated, understood the world around them and expressed that understanding to each other. I would bring back presents that would make my little guy laugh and wonder about people who were different from him, who saw the world differently, who valued diferent things and dreamed different dreams. I would teach my little boy that there was more than one way to think about a problem, a pleasure, an experience; that there was more than one solution, more than one explanation, and these different ways of thinking, feeling, understanding could be tools for making his own sense of the cosmos. I would write wonderful books about people and the objects they made, the survivals of time and weather and cultural storm. I would stand in classrooms and share these visions and ideas with other young minds, and see where they could take thee ideas, what new thoughts could arise just by thinking in a new way, or from a new point of view. Yes, I was going somewhere. I was young. I'm still young for a PhD. I was ready. I had my dream in my pocket, and needed only for time to open out and unfold the events, so they could be savored, shared, and then committed to fond memory.

Academia is a funny place, especially if you're fool enough to take up an obscure field. The whole publish or perish thing is just one facet of the trouble. Children are a big no-no in most departments. Having a family is something reserved for folks in areas more popular with students (and therefore the faculty are in higher demand, and more allowances are made). Teaching experience can actually count against you; it only counts for you if you are also a prolific publisher. What prestige and funds will you bring to the college? That is the question. How many butts will you put into seats? How many donors are at your beck and call? Good teaching be damned, its all about the research. You don't have to be a good writer, you just have to be a published one. Quantity is far more important than quality.

I have a friend who is faculty over at the college while raising an Asperger's child. She's got the full-time gig. Her husband is also a prof. They both do an elaborate juggling act to be sure the children are supervised while they do their research, write their articles, teach their classes. It helps to be in subjects where travel is not a big deal. You can study English quite well without ever setting foot in England. Being full-time gives you more control over the schedule. I often stop to admire how well that family works together as a team to be sure things happen. The flexibility of the schedule is key- there is no way to maneuver through schedules of buses and therapists and hold a full-time, regular-hour job here. Respite and childcare that can handle an ASD child (or even WILL handle one) is practically non-existant without a medicaid waiver. I admire her greatly. She finds time to do her job, expand her work, and advocate for her son. That's a true wonder.

I hadn't secured a full-time gig before I had my guys. I'm an adjunct, when the local schools have money. I grade standardized tests, too, which is the best-paying gig I've got. There's been no time for much research, with running the guys to their appointments. I'm lucky if I get to shower. Trips to India? That's a laugh.

Back to the photo. A dissertation to nowhere. Such is the world I lost when I decided to be an advocate for my son. Not all parents make the choice I made. In fact, I find it disconcerting how few take up the challenge to support and advocate, and instead toss their kid at the school and say "fix it" then disappear. The ones that take up the challenge are always people of strength, fortitude, and often, attitude. Fighting everyone around you all the time is not for the faint-of-heart or weak-of-stomach. All the parents I know who are actually in there pitching are absolutely amazing people. I do my best to be like them. Such is the world I gained.

So this is also an image of what I gained in my life. I have a beautiful son. I hug him close whenever I get the chance. Boys tend to reach a point when they don't want hugs and kisses from Mommy anymore, so I get them in now while I can. Here is an image of the joys of being alive, the comforts of having my baby with me, my little buddy through thick and thin. Even on screamy days, he's my baby.

If I hold really still and think of this image, I can still feel the warm weight of him on my chest and belly, the little hand pulling on my shirt as it clutches at a button, the curve of a diapered bottom in my palm, the soft fuzz of hair, the even breathing sweet with milk. I could tip my head and kiss the top of his, lay my cheek against that little forehead and be instantly in heaven. One little nuzzle and the thoughts would untangle, the words arrange themselves according to thoughts, and sometimes the hand could keep up.

Did I give up my life? I admit there are some moments I wonder if I did. I certainly turned away from the world that was, and entered a whole differnt way of existing, and began to evolve a whole new way of thinking about the world, the cosmos, and my own place in it. Perhaps that is why Welcome to Holland speaks so well to me. I still have moments when I wonder what could-have-been. That old Two Roads in the Wood thing. Don't you ever wonder what was down that well-traveled lane? Even while you appreciate the wonders of the road you have actually taken?

Or, in more direct words...

I always kind of thought that my role in the Hub is not as a leader of a movement, but as a parent. I am learning how to teach my own autistic child- still very, very young- to be able to function and advocate for himself. I can't do that unless I start discussing autism with actual autistic people, so I get a sense of what issues Joey will face, and start thinking about how he might cope with the special needs he has. It is also easier if I have other parents to speak with who understand the concept of acceptance, so that I can prepare for possible problems I will have in teaching Joey, in raising him to be an independent, socially responsible adult.

To what I am doing, it seems I have to fight everyone around me. Now, apparently, that includes autistic adults. That is highly discouraging- even depressing. I was already fighting the ones who clamor for a cure, but also the ones who say they are fighting for rights- including the right to be autistic?

Perhaps it should be considered that the Hub has lots of parents because we are also on that front line of advocating, and we want to get a better idea of what to advocate for. Once Joey turns 23, my rights to help him are greatly curtailed- especially if I am successful in teaching him.

I've got enough people trying to fight me and fight my child. I really didn't need more.

Friday, June 01, 2007

Another Day, Another Can of Worms: To the Autism Hub

I write today thinking about the increasingly... spirited?... discussion on other Autism Hub blogs about neurodiversity as a movement. United we stand. Divided... not so much fun.

I was not invited to join the Hub- I tracked down who owned it and asked to join. I am glad to be here, though I doubt I'll be nominated anytime soon for any "thinking awards" or that anyone will track me down to ask me to write a book. Well, not about Autism, at any rate, nor anything based on this blog. I'm not the best writer on the planet. Call me a selfish little piggie if you like, but I joined for me- because the blogs I liked to read all had that noble mark of the Autism Hub. Because I wanted to be part of the community that seems to be centered here.

Perhaps because I "grew up" playing MUDs and connecting through text on a screen, the whole online thing come to me as a sense of spaces, cozy little wizard domains where we set up shop according to our own gifts and use our workroom-blogs to try to share a little of our favorite talents and thoughts with those we have invited in- in this case, everyone. I like visiting you all. I sometimes wish I had some of the wonderful talents you all seem to have. It feels like meandering over to different people's houses to hang out with a cup of something yummy on a very comfy couch, and seeing what everyone is up to today. It's like going down to the Hay when I was college, getting some strawberries with z-cream (or fresh carrot cake! Yum!), finding the best couch by the window (since I was the only one who didn't smoke, I needed a window), maybe flipping through the nearest shelf of used books to see if there wa anything new and interesting, and seeing who showed up today. There was a basic core crowd that usually showed up, and then the drifters who sometimes showed up, and the fringes who you remembered when they did show up, but they usually had other lives that kept them too busy to come much. I was always glad to see everyone. They all had such interesting stories and lives and thoughts and dramas. I still wonder what happened to those people. They don't let people smoke at the Hay anymore. It has a grill now, new premises, a juice bar thing; I don't think they sell books anymore. Gone are the comfy couches that drew us together and gave us a livingroom- or was it a family room? away from home.

Being the mom just starting the adventure of supporting an autistic son, I spend most of my Hub time following the blogs and lives of others with autistic children. There is a comfort in reading the speech patterns of Whitterer's kids, who seem so very verbal to me, and seem so close to Joey's. There is hope for more communication from my own baby when I read about these guys. Besides, who else knows that "goldfish" is a food group? There is also comfort at Club166, who has been there, done that with the IEP nightmare. Kristina is always offering great information and solid advice. Big White Hat provides an air of southern charm and gentility to the whole thing. I could go on. You probably get the picture.

That's right: I am one of those "parents." Ignored and even actively disenfranchised by the school system that is supposed to be helping my child, taunted by many of the parents around me because I don't declare thimerosal to be the Work of the Beast and chelation to be the Salvation of Us All, and bounced between therapists and specialists who can't seem to agree on what exactly Joey may or may not need, the Hub is a place where I can pull myself together on a Screamy Day and remember I'm not the only person doing this. That I'm not crazy thinking my kid is, first and foremost, a kid, and should be treated with respect and dignity- the same treatment other children seem to get from people as a matter of course. Here is a place to access what others are thinking and feeling, especially adults who face the challenges of autism directly, and with courage, strength, and even pride, so that they can enjoy their talents- like everyone else. Here are people, autistic or otherwise, whom I hope my children (both of them) can and will look up to and try to emulate, learn from, and remember all of their lives.

Yep. Plenty of comfy couches here. There's food in the fridge. You know where the drinks are. Make yourself at home.

Thursday, May 31, 2007

Kindergarden Readiness

Next week we do another turn on the IEP dance floor. This is a biggie. We change fromt eh world of preschool to that looming unknown of kindergarden. Real school. SOLs. Full day education.

This was the fall I was supposed to put my little boy on a big yellow school bus for the first time. Instead, it will be our fourth year- old hat. It will just happen earlier in the morning. I actually remember the first time I got on a school bus. The morning was cool and dewy, and I had on a jumper and red checked shirt that I dearly loved, it was really comfortable, and shoes that weren't so much. I can still smell it, the metallic damp of the bus and the plastic seats that were too hard to really get comfortable on. Joey loves riding the bus. It will be a comfort as we send him off into a new world.

It won't be completely new, though. We're probably going to go ahead and put him in the summer program the schol cooked up on the fly; it will give him a chance to get used to the new building, and provide him a very regular schedule or most of the summer. The point is to not have him freak out for months and waste more time at school than absolutely necessary. Maximize the learning, that sort of thing.

We decide the setting Joey will be in. Will we put him in the self-contained classroom, with the spectacular teacher, lower student: faculty ratio, but not as much exposure to non-disabled peers? Or do we try to press for LRE, despite the teacher being lukewarm and no aide available? The school personnel find his "behaviors" disruptive, so they want him in self-contained; but how much of it discrimination against his way of expressing himself, and how much is really of concern? So what if he tracks instead of giggling with his classmates when he's bored? Shouldn't it be the BOREDOM that is addressed, not my son's way of expressing it? Its not like he's hurting anyone.

My private OT is coming to the meeting. She's as unhappy as I am with the OT situation at school. The OT is the only person that holds over from the preschool; she's the only OT in the system. With all the kids they now know need OT services, you'd think that they'd start hiring OTs, just like they now have several SLPs. But no- we're stuck. So I'll bring an actual professional to help us determine goals.

I also have located a few online resources for determining "kindergarden readiness." Why these weren't pulled out when I was asking about what skills he needed for kindergarden back in September, I have no idea- they are right off the VDOE website- but that's all water under the bridge now. I have these tools now, to take with me and ask about. "He can't sit and listen to a story for ten minutes. He can't tell you his first and last name. He can't button his own clothes. These are skills VDOE says are signs of kindergarden readiness. How will you be addressing these issues?"

As usual, they will probably try to fluster everything and say they are being addressed in goals that sound vaguely connected to these skills, while missing the point. Then they'll tell me they know best, since they are professionals, and have been working with him for three years now. And it will all be so that they only provide what they absolutely must, and at their own convenience.

It's going to be a long week.

Wednesday, May 30, 2007


For those following along, the allergist says Joey isn't allergic to anything. The improvements we saw with the prednisone are not connected with allergic anything. The rash he's had since the day he was born is "follicular"- it seems to be following his hair follicles- and isn't itchy, so that's not an allergy. According to the allergist. He says to give the kid eggs, and if the rash comes back, pop an anthisthamine into his mouth, and if he gets better in 2-3 hours, then call the doc back; but otherwise, just tell our docs.

I did tell our docs. They told me to make an appointment with the allergist.

And so it goes.

Tuesday, May 29, 2007


Well, the day came we were hoping wouldn't.

Over the weekend, Joey and I went for a walk. We were sort of heading for the Memorial Day Illumination, but instead we met some of teh kids across the street and had some impromptu social interaction. Joey really enjoyed himself, and the trucks, and the bikes, and the kids, and can't wait until we "go for a walk" again. I also had fun, because I actually got to talk to other moms and dads, some of which have been int eh neighborhood a while, and I've never spoken to. Crossing the street is a big deal with two small kids, and we don't do it very much.

Today, he kept talking about a blue truck. He has lots of trucks and cars, and every time we found one that was blue, it was offered, and turned down. After speech, I took the baby upstairs for a nap, and mom took Joey outside for a ride on the tricycle, where I joined them, and yet another round of "want blue truck." He opened the back door and went into the house. "Are you getting your truck?" I asked casually. "Yes," he replied, and into the house he went.

Mom and I chatted abotu some local news, friends not doing so well, the allergist appointment tomorrow. The doorbell rang.

Not expecting anyone, I looked up. I can se right through the house from where I was sitting, back door to front- it is one of the reasons I habitually sit there. The door was open. A woman was coming into the house, following Joey. It was an odd sight, and about fifteen things raced through my mind- how did Joey get the door open? Who is this? Did we have therapy today and I forgot? No, its Tuesday. And why did they come to the door? Is Joey letting a stranger into the house? Does she need help?

I was to the door when my brain turned on and recognized my across-the-street neighbor, and the words emerging from her mouth. You guessed it, didn't you?

"He was in the middle of the street..."

Heading across the street, to get the blue truck he had played with days ago, which actually belonged to the little boy whose mother was telling me that she asked Joey where his mommy was, and he had said, "outside" but she didn't see me, so she brought him back across the street...

He was in the middle of the street.

My street is not a hustle-bustle big city disaster, but it is a bit of an artery across town, often taken slightly too fast by us townies. He could have very easily have been hit.

We lock our doors out of habit mostly, from living in places liek Charlottesville, where people were known to walk into homes while people were home and steal stuff or attack them. With Joey's new and unpredictable fondness for wandering off, we have taken this habit to heart. Usually we keep the key to the front door on a high hook. He can work keys, but since he can't reach the key, this has been our current compromise of keeping him locked down, while not being a major fire hazard. However, my mom had left her keys in the lock while she watched Andy (while Joey and I went to therapy). Those keys remained in the lock when I came home. Joey wanted to go across the street to get the truck, so he just turned the key and was gone.

The main problem now is that the back door does not have the double-key bolt, and he can work all the locks and latches I added to it now. Worse, he has actual motivation to leave the house, and determination to do so= we'll hear about this truck for days, maybe weeks. He has a reason to go across the street, and no concept of improper hour of night, danger of the street, and despite our best efforts and lectures, no concept of the reasons he can't just go across the street, walk into someone's house, and get what he thinks is his.

The locksmith comes on Friday. Until then, we have barricaded the back door. We're also seriously looking into alarms. At least we'd know if he opened a door.

Monday, May 28, 2007

Everybody into the pool!

'Tis the season for getting the water out, watching Joey splash about with glee, then simply pick up his feet so his bottom hits the water, sending half the pool to the grass. It is also the season for Andy to jump in, sit in the water, get out, and complain that he's wet.