Just a little update

Busy busy busy here... Andy is potty training. I am running around after him with the paper towels today- we're wearing our underwear!

And they are spending the day watching Signing Time, so we're practicing our signs. Joey only takes a couple of viewings before he has it, or at least the idea of it. Our OT was excited because signing requires bilateral coordination and some motor planning- so it takes him a little longer to be able to do the sing, but he understands it almost right away.

Fun fun fun!

Theory of Mind: What is this rot?

The topic of "theory of mind' has been popping up in all sorts of odd places for me- particularly the idea that autistic people don't have it. Either I don't get what "theory of mind" is, or the idea that autistics don't have it is a lot of rot.

In a basic simplification, I understood that the "theory of mind" means that one person can understand that another person has a mind. It is being used as a shorthand for the ability to pick up and react to other people's emotions, because you understand that they HAVE emotions, thoughts, feelings, beliefs, etc., and that these emotions, thoughts, etc. might be different from yours.

Setting aside that I know a lot of non-autistic people who have a lot of trouble with the second part of that, I haven't yet met an autistic person who didn't have these abilities. They might not be able to react appropriately to other other people, but that seems to be more a problem of processing and accessing proper response. Kind of like Joey having a hard time accessing words spontaneously, and so he has a great deal of trouble with communication and expressive language. He copes with this by scripting, or quoting like Mrs. Who. Sometimes he accesses something other than what was intended, resulting in words that make no sense; or he can access nothing at all, resulting in either silence or frustrated squealing (or other noise).

In other words, Joey seems to have no trouble understanding that other people are, in fact, people. He is very sensitive to emotional states- especially mine. He certainly understands that other people do not feel and think the same way he does. And he's only 5, and I've had evidence of this for a while.

People who are not autistic seem to come up with the odd ideas when they just can't get the fact that there are people in the world who cannot communicate orally- or even verbally. They seem to have their own problems with "theory of mind" in that they can't understand that there are other ways to communicate. Joey's private speech therapist has been very apologetic since she started Joey on ASL, because it became immediately apparent that Joey understood a lot more of what was being said- and what he wanted to say- than she had been giving him credit for. With teh visual cues, Joey can circumvent some of the auditory processing and instead use his visual processing- and so can better understand what is expected of him and what is being said to him. He can also access his words better and faster.

Before Joey had use of words, even signs, we knew what he wanted and needed much of the time. We could certainly tell if he was happy or unhappy, if he liked anothe person or not, that sort of thing. We had communication with him, and he understood to communicate with us- just not in the "usual" ways.

Theory of Mind seems to be just another way of trying to depict autistic people as something less than human. Of taking away their sense of humanity by taking away their sense of community. It is easier to make an object of a person you believe is making an object of you.

Joey gets the idea of people. When Andy hurts himself, he's quick with that hug and kiss- always was. When Mom is nervous abotu an IEP meeting, he gets upset, too, and lots more cuddly (and clingy). When we're all happy, he's all smiles. He wants to make people around him feel happy. When he laughs inappropriately, he's still reacting, and even usually seems to know that laughter isn't what he intended. He's got the idea that other people have minds.

I have no idea yet if he knows those minds aren't like his.

Parking

On the advice of our doc, we got a disabled parking placard. This is a little peice of plastic that looks like a do-not-disturb doorknob sign, and it allows us to park in disability parking spots when we have Joey with us. I've been putting off getting it. Joey doesn't have trouble with actual mechanics of walking- at least, not enough to prevent him from crossing a parking lot. With the increase in bolting, the doctor thought we should go ahead and get one, though, because some places around here only have off-street parking for disabled persons. Getting Joey in and out of a car in a lot, instead of on the street, is far, far safer, especially if the place is unknown or not well-known.

We used it for the first time yesterday. We took the bairns to the mountains. It's a nice ride, and Skyline Drive is so pretty. Joey was a little overwhelmed by the views, but Andy liked it, especially if a bird flew out over the valley. We stopped for lunch, and the lot was full- except the disabled spots. We added up our situation: strange place with busy parking lot, lots of people, no other spots available anyway, spot available almost at door. We whipped out our new placard and parked.


It was amazing.

Normally in such a situation, getting out of the car would have been a carefully orchestrated set of events intended to keep Joey tethered to one of us while the other wrestled Andy out of his harness. We then do a careful hand-in-hand dance across the tarmac hoping that wriggling fingers don't break free and suddenly have a boy in front of a moving vehicle, or worse, have a child melt down.

Not this time. We pulled into the spot, and herded the boys almost directly onto the sidewalk, away from cars. Then we went smoothly into the building. Coming out was even better. Out the door and into the car. No tarmac-crossing necessary. No danger of stepping in front of cars. No worries about getting halfway to the car and losing a child to wriggling or melting. No problemo.

Today I took them to Maymont. I used the magic of disabled parking again. The disabled spots are right in front of a little path enclosed by shrubbery right down to the door. No steps to trip on. No crossing in front of traffic. I can't BELIEVE how much safer this is. I'm just flabbergasted.

I won't need it in common places like the grocery store, because I park next to the carts, since Joey prefers to ride safely enclosed in a cart. But in unfamiliar lots... what a lifesaver!

IEP Aftershock

The meeting went pretty smoothly. The school OT kept her mouth shut, but also offered no actual goals. She managed to put her name on something so she can be put down as a consult, but that's probably just because she'll be in teh classroom anyway; I suspect she has to clock her time or something, so the more "consult" she has, the less actual work she has to do. But perhaps I am being ungenerous.

Anyway, we got some goals, mostly social interaction and language stuff, and we've got the good teacher. I'm going to chat with my private OT, who went to the meeting, abotu the OT situation before I sign this thing. I'm not crazy abotu having the school OT messing with my child, but I'm also worried about having direct OT off the books, and maybe he needs some goals that got swept under the rug?

The new administrator is a no-nonsense, get it done kind of lady. This made the meeting go at lightning speed. Another reason to not sign anything- what didn't get discussed, because we were distracted by pre-drafted goals and the march to signatures? We're in no hurry. The teacher I already know is the best our system has, and we seem to communicate OK. The new SLP seemed OK, and friendly enough. So this might be OK. That would be nice. We'll see.

The new team was very interested in a powerpoint I put together about Joey. It's a little too detailed to be posting on a public blog, but mostly I used Kristina's (Autism Vox) suggestions to put it together, so that we could communicate how we view Joey, the role of the school in his education, and highlight his strengths and abilities instead of the deficits- since most of these meetings dwell on goals for thigns he isn't doing so great with. The preschool staff would see my computer and roll their eyes. These new people wanted printouts to distribute to the staff who would be working with Joey- all of it. There's an interesting change in pace.

One thing that kind of bugs me is the whole system made manifest by the meeting was clearly geared to absent parents. It was like a great machine, and you either said yes or no. I wonder how much of the smoothness is because someone has told people to back off, or if they've just figured out ways to keep me at bay, so I have to go home an dthink about what actually happened and whether it is worth hiring a lawyer and checking everything top to bottom. Or maybe they know I'm likely going to do that anyway, and just aren't going to put out more energy than needful. Or are these new people more efficient, being used to having lots of kids show up at kindergarten with no intervention and disinterested (or overbooked) parents? Or did someone put a fire under someone's butt and tell these folks to start at least appearing to obey the law and quit making fusses? We've had so much trouble, I am still inclined to be suspicious. I want to know what is going on for there to be such a dramatic (apparent) attitude shift. But for now, I'm jus going to go over the IEP with the proverbial fine-tooth comb and start from there.

Shame we dont all live closer so we can get together for an IEP party and pull apart each other's IEPs and ask questions and stuff. :P

One of Our Fears

We live in fear of this all the time.

As we prepare for our IEP, we also prepare to answer for that most heinous of suggestions: that Joey does not need service and support because he is "high functioning."

Yes, Joey likes to interact with peers. He hasn't a clue how to do it, but he really, really wants to. He doesn't have the language to carry a conversation, or to respond to another child's request within play (he can answer "Do you want to play?" but when asked "Want to play superheros? Want to be Superman?" we are definitely out of Joey's element.) Joey can count, he can name colors, he can write his name and read a few words. But can he ask a question? Can he communicate his needs? Can he engage in social conversation? Can he, in short, function?

And until he can, why call him "high functioning"?

Presents

I got the presents: beautiful faceclothes and shower gels all around. It took me half an hour to pick out the clothes. Some of the other shoppers were laughing at me rummaging through the towels and touching every single cloth- but the point was to find the ones that were thick and lovely. No one needs another cheapo yucky facecloth. I gave out massagers last year, so this should work fine. A little spa treatment over summer vacation.

I was even nice and got one for the school OT.

On the upcoming IEP meeting

This morning I plan to go shopping for end-of-year presents. I'm not sure what I'm going to get. Usually I have something in mind- but this year, I'm a little aimless. It isn't like these people have been wonderfully helpful, friendly, or even polite. They've done little for Joey- he's doing The Very Hungry Caterpillar for the third year running, and is bored to tears, and they wonder why he's being uncompliant and argumentative. When I ask questions, the first response has been "We're professionals; why are you asking questions?" I feel like Harry Potter trying to talk to Aunt Petunia.

I'm not ask stressed as usual about the Friday meeting. Maybe I'll start freaking out tomorrow. There's really no point. I have the OT coming with me, and the kindergarden teacher has said she will also come- I think it is silly that the next teacher wouldn't be automatically included at this meeting, since she is the one who needs to understand the IEP. But I got that fixed, she's coming. I'll do what I can. And if there needs to be more, I'll call another IEP. I may hire a legal advocate for next year, but we'll see how these people deal with it. I'm kind of ooking forward to having a mostly new team- though I get to keep the most problematic member of my current team. Hooray! That's why the OT is coming with me. I'm not the only one unhappy with Joey's OT goals.

Tonight, I'll comb through the reports we have and put together things that need to be addressed. And we shall see what they feel like addressing.

Warm fuzzies all around

Joeymom -- [adjective]: Fuzzy to the touch 'How will you be defined in the dictionary?' at QuizGalaxy.com

Shhhhh...

I was awakened this morning to two little boys in my bed, bouncing on it. When I opened an eye, I got two little kisses, and a chorus of "Shhhhh... Mommy's sleeping!"

Signs

Joey had a good speech session today. He's learning sign language. This will give him visual cues, to use when he cannot find words, or for us to use to better communicate with him. HIs favorite sign is "fox." Today, he and Nikki were doing some other things, including looking at some Richard Scary books. He turned to her and signed about what he saw on the page: "The fox ate and ate until he was full!" When Nikki said these words he said, "Yes! That's right!" and laughed, and then repeated them.

I still think most of Joey's speech is scripted or echoed. I usually use "scripted" to mean that he knows what the words mean, and is trying to use previously-heard strings of words to convey meaning, sometimes quite successfully. "Echoed" means the words are empty, repeated because he has learned they are a proper response, but doesn't know what the exchange means; or he just likes the words and says them, perseverating on the sounds; or he is too upset to be able to recall the words he needs, so he repeats back anything his brain clings to, regardless of meaning. He is clever enough to sometimes mix strings, so that one half of the sentence is pulled from Little Bear while the second half is from Pinky Dinky Doo, but they are still just blocks and strings of words he has heard before.

The signs seem to be doing several things for Joey. They give him a visual cue, so that slow sound and language processing can be slightly bypassed. He understands what you are asking of him or telling him. They are also providing him a way to communicate spontaneously, without having to come up with spoken words. He gets very happy about this, like talking about the fox in the picture. He doesn't have to come up with scripted words for a new situation; he can go with signs, movements that he can apparently access better and faster.

So when Nikki was having a hard time getting him to sit an attend, she finally signed her request: sit please! He saw the signs, suddenly lit up, said, "Oh! Sit, please!" and sat down.

Sign language will probably never be Joey's primary form of communication. He speaks very well, and he's well on his way to reading. However, he seems to like it, and seems to be helping him catch on to concepts, and we;re going to try to focus on giving him signs he can use to talk to us, instead of a bunch of signs for us to boss him around with. He's so funny, sitting in front of a mirror, signing "fox" to himself and giggling. I need to get a mirror put up in his room.

Dinosaur Matching

Andy does not like to nap. Recently, we have decided to just feed him at 5 and put him in bed instead of trying to get a screaming mass into his room for a nap after lunch. He needs this because if he gets grumpy, he tends to hit first and ask questions later. I would work on a 2pm nap, which would work very well, except that I am rarely in the house at 2 o'clock because of Joey's therapies, and will not be in the house at 2 o'clock all summer long.

Taking him up at 5 includes his bath, where he misses his brother, then stories. IF he is still awake at 7 when we bring up Joey, he gets another story. They usually involve dinosaurs or Karma Wilson. I also have some fabric books I've sewn up, which he often uses as pillows.

As part of the dinosaur fascination (infatuation?) I have pinned up some pictures of dinosaurs on Andy's room. A good friend sent them to us a while ago. Andy was absolutely thrilled when he saw them. He likes to point at them and tell me what they all are- and since I have learned what they are, I can decipher his attempts at articulation. Practice makes perfect, right?

Yesterday I put Andy upstairs with some stories, but all was not well. Andy started to really lose it, so back up the stairs I went. What was wrong? All I could decipher was "Edmontonia!"

For those of you who may be dinosaur=challenged, and edmontonia is a type of ankylosaur- a tankish, armoured thing with shoulder spikes and a clubby tail. It happens to be one of Andy's favorites. He held out the fabric book I made, based on postage stamps of dinosaurs, open to the edmontonia page. He was inconsolable.

I went into the room and sat with him as he tried to explain the problem, in sentences that were completely unintelligible despite beautiful and meaningful inflection. Edmontonia... t-rex... allosaurus... diplodocus...

Then I realize he's pointing, not just waving his arm. I look down at the book. Then I look up at the wall, where he is pointing at the pictures. Though the backgrounds are different, the actual dinosaur is the same- the pictures are probably the stamps, and the book takes the dinosaur, and photoshops it into a brighter jungle backdrop. However, not all of the dinosaurs on the wall are in teh book- and vice versa. Edmontonia is in the book, so he is looking for it on the wall- and it isn't there.

Good news: Andy is matching!
Bad news: I have no idea where to get a picture of an edmontonia, much less the exact one in his book, to put on the wall.

Slumber Party!!!

It is bedtime here. Usually that means time for a fun bubble bath. Joey likes spraying his own hair and shampoos his own head, and will even now brush his own teeth (we do this in the bathtub, because I introduced the new spinning toothbrushes there when I thought sure they would be a flop- but they are a hit, and now toothbrushing is part of a bath. As long as the teeth get brushed, what harm is there?). He usually complains that the water is too hot, but otherwise happily splashes away Joey loves water. The other one screams about any water touching his head, likes the head rub as mommy shampoos the head, then screams again for the rinse. He then does his best to drink as much bathwater as he can before being removed from teh tub to complain about being wet. Andy likes water, as long as he doesn't notice any on him. (Remember, Andy is supposed to be my NT one...)

We then get into pajamas with much help from mom (remember trying to put on pajamas while damp?) and have a story. We managed, barely, to get through Charlotte's Web chapter-by-chapter; usually we just do a picture book. Then a rousing rendition of our favorite bedtime songs, including Old MacDonald's Dinosaur Farm (how may dinosaurs can you name and provide a sound effect for?), and then we separate to our rooms for bed.

Unless we declare Slumber Party.

Slumber party is declared when Joey, who usually insists someone (meaning me) remain seated in the chair in his room until he falls asleep, dismisses said parental unit with a firm "Mommy go away now." Then I am stared down until I get up and leave. Joey then starts his CD player, and the fun begins!

First, Andy must be released from his room. Then there is a jolly time of squealing and flopping into bean-bag chairs and joyous jumping on beds. usualy a tickle-fight is included, a well as occasionally checking on the parental units in their room (to be sure they are still safely installed at their laptops.)

Sometimes we get surprise kisses, or a boy coming in to "scare" us, or other fun games.

When it gets dark, it is finally time to settle in and go to sleep- the slumber party is over.

Sometimes its fun to think you are getting away with something.

Invited to play

We have a new, wonderful game here- Playing Cars. Joey gets out the little road/runway thing that came with a Fisher Price airport, finds some of his cars, and then gives one to Mommy saying, "Come play cars, Mommy!"

Intiiating social interaction. Appropriate language, appropriate play. And he's figured out that if he does this, the world stops and Mommy gets onto the floor and plays cars, even if she was cooking or working or doing some other thing Joey prefers I didn't do. Andy grabs a car, and there are the three of us, crashing cars together, or racing them, or just driving them around and getting our arms all tangled.

Sometimes the cars even talk to each other. Joey stops his car in front of my car and says, " Hello car, I'm Joey!" and Joey the Car makes a new friend.

Now that, my friends, is a miracle.

When to speak- what to say

I have two very important opportunities to advocate generally for autistics. I am the chair of the Parent Advisory Committee for our local special ed system, and I am also on the committee that is supposed to be training school personnel about autism. No one who is actually autistic is on either of these committees, yet both have a good deal of power over the lives of autistic children, and even some autistic adults (special ed can rule your life until you turn 23).

I have a friend who was appointed the chair of his department. He took it as the huge honor, that everyone must think so much of him. Itried my best to tell him that being chair of a department is not an honor- it often rotates like a hot potato among faculty members- it is an opportunity. You have your chance to do things your own way, to get your own ideas heard, to get things you think are important on the agenda.

Being chair of the advisory committee and being on this autism training committee are similarly opportunities. I can stand in front of the school board, the superintendant, the director of student services, the principals, the teachers, and say anything I want. Here is an opportunity- and a rsponsibility, What do I say? When do I say it?

So far, my message has been "disabled people are, first and foremost, people." When asked about curing autism and what stance the school should take regarding autism, this has been my answer: Autistic people are people. Treat them with the same respect you expect to receive. They have the same right to be educated that any non-autistic child has. They need the same opportunity to be independent and socially responsible that any non-disabled child has. If a normal child had trouble in reading, you'd provide tutoring, right? So what's the problem with providing the support a disabled child needs to succeed?

This message seemed to be supported by autistic people I knew in person, and was certainly supported by the other parents I know in the system (though admittedly, both are not extensive groups of people, and may not be respresentative.) This is the best I could do... until now.

And now I ask you... now that I have readers who are autistic, raising autistic children, been through the special ed system, and have a wide variety of persepctives of the message to send- if you have the ear of of all the powers-that-be of the school system, what would you say? (Politely, that is?)

Another Article to Check Out

Have multiple autistic kids? There's no volume discount for therapy.

I still joke at the office where we get speech and OT for Joey that they need to get me a recliner- or better, a cot. And I only have one...

Depression

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.

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.

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.

Allergist

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.