A Good Look

Ah, winter. I am a contract employee for a living, and this time of year, the work wanes; so I wasn't working today. Instead, Mom needed a computer, so we loaded up and headed over to grab Grandma and take her to Short Pump, the location of the Mac store.

The boys have been in an unfortunate mood. They are very bickery, Andy has been having people talk to the hand instead of dealing with them, and Joey has discovered several phrases that make Mom, Dad, and/or Andy squeak in amusing protest and annoyance. It's been a bit of a long week, turning fast into a long weekend. On top of that, I have a selection of students who like to email rude complaints about my tests and grading policies, and they have been timing these emails so that I get them just as I am about to close down and go to bed, resulting in me dragging my butt to bed at 1 am instead of the planned and much needed 10 pm. Then there's tonight, when I am now overtired and wired, and its 11 pm. Bets I end up awake at 1 am again?

Anyway, we were whizzing down the street, headed to Grandma's, and apparently our van went invisible. This happens to me a lot. My car becomes invisible, and people decide they want to be in my lane. Only this time, I wasn't driving, which was a change. And then folks in front of us decided they needs to stop RIGHT NOW. Fortunately, my van has good brakes, and Allan gave up and scooted around the creeping brake-slammers.

As we accelerated to a more appropriate speed around the folks who needed to learn to drive, Joey squealed with glee, "Daddy! Look at you!"

Ah, positive reinforcement. What a supportive boy we have.

New Design!

Because I am SO good. Do you like them? Are they pretty? Think they'll sell big-time? I just so tired of those puzzle-piece things...

Movie?

I'm testing out the adding a movie thing. It didn't used to work for me, so let's see if we have progressed...

Good Morning!

So... this morning, Joey wakes up, goes into the bathroom with his Dad, points to his eye and happily proclaims, "I'm not hurt anymore!"

Yes.

Wordless Retrospective: Boys in Silly Hats

Not the Way to Start The Day

I think I cursed us yesterday. :P Yesterday started with peace and joy; this morning started with a level 10 meltdown. Yes, I'm sure you all looked at that time stamp. I'm still shaking, but I probably won't have time later to post.

Joey got something in his eye. Or he got poked in the eye. I'm not sure which. But one minute we were happily settling into a before-school episode of Signing Time, and the next moment I had Joey screaming and biting himself and thrashing everywhere. Whatever happened, it hurt. The only information I have is it was a duck (there is no duck in sight; I thought he meant Doc, because that was in sight, but he insists it isn't that) and that Andy didn't do it (and he was firm on that point, too.)I pulled him out of it before the bus came, more because I had him keep his eyes closed as much as possible- which made the meltdown worse, Joey didn't like it one bit. But the eye recovered.

I was glad to get him to the bus not because he left my hands, but because the vibration and movement of the bus is so soothing to him. Im not sure telling the bus driver about the problem was necessary, but if he's scratched his eye, it might be sensitive, and I didn't want them in the middle of a renewed meltdown without warning. Also, I thought the aide might help him keep his eye closed a little longer.

Thus begins my day. May it only get better from here for all of us. You, too.

The Way to Start the Day

I woke up this morning in my usual chair (Joey muscles me out of bed) to find one little boy in my lap, and the other one crawling on; and both of them grinning at each other saying brightly, "Good Morning, Brother!"

Roar. Mew.

Thank you, Stimey, for my shiny new award! I'm always surprised when I get one. I spend a lot of life on fringes of things, a forgotten bounder, present but not part. I'll blog about that some time, I suppose.

Anyway, I got this cool award. It's called "A Roar For Powerful Words" and its from the Shameless Lions Writing Circle. Stimey gave it to me because I "regularly make [her] think." I wonder what I could possibly make an amazing someone like Stimey think about that she thought deserved an award. It's a humbling thought.


Part of this award is you have to come up with three things that you think makes writing powerful. I would have to say first, I think that good writing keeps in mind its audience and its goal. For blogs, this can be many and diverse; for here, my goal was to remove fear, provide grounding, and give other parents access to an experience of raising children that was accepting, joyful, and naturally human, with all its ups and downs, so that those highs and lows were not something to dread, not something dark and foreboding in their mystery. One of the great blogs I know for this ability to know her audience is MonkeyGirl at Musings of a Highly Trained Monkey. Those of you who have not yet swarmed over to her site to check out life as an ER nurse, go. Now.

Next, I would say that good writing, especially good blog writing, needs more than just a sense of humor- it needs a firm grasp of the absurd. You need more than a chuckle here and there, you need to realize that life is one long belly-laugh if you just stop long enough to take in the joke. I know Maddy at Whitterer on Autism is the true mistress of this, but she's already gotten this award. So instead I'll send you over to my other favorite ER/medico blog, Ambulance Driver. Besides, he likes getting lots of hits.

My third thing is that you have to have something to say. That may seem a strange thing to mark down, but when I was in college, I had a very serious problem with this. I was taking a wonderful poetry seminar with Andrew Salkey, which was a bear to get into because you had to apply in person with a poetry portfolio, everyone wanted to take the class, and there were only 15 slots. I was absolutely abashed to get in, especially when I walked in and found myself in a room full of English and Creative Writing majors... and me. He said straight-out that I would never be a poet. I had a wonderful grasp of language, but nothing to say. Everyone else there had the opposite problem. Without something to say, what good are words at all?

The blogs I read all have something to say, but I'll direct your attention to these:

Casdok at Mother of Shrek and her message of hope, love, and joy in her son, C. I direct a lot of families to her blog, but especially families who seem to think I can be loving and accepting of my own children because my experience of and writing about autism is "autism lite." You can accept people for who the are, as they are... no matter what challenges they may be facing.

The Autistic Bitch From Hell at Whose Planet Is It, Anyway? with her powerful reminders that autistic people are, first and foremost, people.

And then there is Big White Hat, where we find life and faith can indeed meet, and are relevant to one another. That's a good message to keep in mind.

There were lots of other folks I thought of, but most of them already had this award, and I hate to tag someone who already got tagged. Since I don't read too many blogs regularly, coming up with fresh destinations for you is- as you may notice- not too easy. I've probably sent you all of these places before. But then, i read these blogs- and the others I thought of- for a reason. I've not much time for idle blog-reading. Hugs to you all.

Boys Growing Up

Andy has been doing really well at school. As he gets more exposure to other children, he is picking up on social cues, roles and expectations. We went for a bike ride over the weekend, and he shared his bike with two other kids, quite happily. His teacher said he is doing a lot better in class, accepting the other children and playing with them, and sharing the toys. His speech is improving- lots more sentences. Even today, when he was being persnickety (Grandma was sitting the wrong was in the car, any static-y noise brought on complaints, couldn't sit to eat), we could understand him most of the time, he was playing with other children he met, and he was hugging on his brother.

Meanwhile, Joey is also coming right along. We had plenty of words after school today, He wanted to know where Miss Jill (one of our ABA therapists) was, and only took a few minutes to accept that she wasn't coming today (ABA is Thursdays). He actually tried some of the rhythm exercises for Mr. Shelby at drum lesson. He ate his dinner, cleared his place, and asked for dessert without prompting. Yes, coming right along.

They're getting to be big, big, grown-up boys. Amazing. So here's some good-luck doing-well dust to scatter around to the rest of you, to celebrate our great week- may you have great weeks, too.

A Lovely Visit

So I plunked myself into Joey's classroom again this morning, and started asking lots of questions... like, what's ESY going to be this year? And what will next year look like? And what goals should we be considering? And nosey stuff like that.

So we had a lovely little talk about such things, and I am happy to report that Mrs. H is on the same page we are about planning for Joey and what he needs. She also thinks the ESY worked, and not to break something that works. And more time in the inclusion room next year. And his reading is fabulous. And he's fabulous. And lots of other details I don't usually discuss here anyway. You know, school stuff. Educating the child. Keeping him engaged and challenged. He wants to read on the second-grade level next year? No problem. Needs more help in science and social studies? No problem.

Sitting with Joey in circle time, he pulled my head over to him and played with my hair. Playing with my hair is new. He really needs something to do with his hands while in circle. He is doing lots of first-grade reading activities and writing. It sure is nice to be included in his little world, pulled in voluntarily and see his grin when he knows I am there with him; to be pulled nose to nose to that grinning face by little hands, and told, "Hi, Mrs. Guyton!" with such love and pride. I only hope he knows that's nothing compared to how proud I am of him... how much I love him.

Upcoming triennial

In the good ol' Commonwealth, every three years, whether you need it or not, unless it is absolutely obvious what the outcome will be, in which I suspect they just don't bother to invite the parents, you have to have a meeting to re-determine your child's eligibility for special education (Yes, Ann, I did look into what I had been told, and from the regs, I would say the triennial is required for all sped kids... anybody find where it might not be? Long story of how I was told "obvious" cases don't require a triennial). Ours is scheduled for Feb 22. I plan on coming fully armed, just in case.

We have been really happy with Joey's teachers this year, but our past history of meetings in this system has been less than satisfactory. I have no clue whether this is going to be a pat on the head or an ambush. I alerted our private SLP and OT. Should I call Kluge and get a new letter? Are there private educational consultants I should be consulting? Should I try to drag something in writing from our ABA therapist?

Because the facts we are facing is that Joey could not go into a classroom without support. He can't communicate effectively. He can't socialize effectively. He'd drown.

When we started the school thing- three and a half years ago now- we thought he'd be going into an inclusion room by now. Now our goal is for third grade. And we're wondering if we won't be sliding it to sixth grade. We know so much more about autism and about Joey about the pervasive nature of his disabilities (and his abilities!). We're gearing for what we expect to be the next big battle: what to do with a child who is both special needs and gifted? How do you deal with a kid who academically is leaving everyone in the dust, but who needs the support to get through the labyrinth of simple social interaction and specialized testing? The special ed systems around here are all set up for mental retardation, for kids who need social supports and academic remediation. It is definitely not set up for Joey. Kids are supposed to be reading by the end of kindergarden, not the beginning... and not in special ed.

One good sign is that this teacher is asking whether we think Joey is going to need ESY (summer service). Although we know this may just be a way of feeling us out in order to try to put together a rebuttal, but these teachers seem more interested in Joey's progress than that. You just don't know. In the past, it was used to block us as much as possible, so we have to be prepared. Brush off the latest version of PowerPoint...

A Strike Against Disney

ABC is airing a new show with a first episode that implies a link between autism and vaccines. The co-creators say they'd be upset if people stopped vaccinating because of the show... talk about waffle-waffle. If they were so concerned, they would never have written it. If they believe vaccines cause autism, why are they saying they are concerned?

And if they don't pull it, guess who isn't going to buy any more Disney products?

How was your day at school?

Today was a strange day. Not bad. Strange. Joey didn't have school- teacher workday.

Andy did.

So Joey and I took Andy to school this morning. We then went for a swim at the gym, which was a lot of fun, and then we returned for our Andy.

Andy's class wasn't ready yet, so we stood there a while with Joey's chorus of "where's Andy?" continuing from the morning. When the door finally opened and the munchkins were released one by one, Andy rushed out with a hug for his big brother. They walked back to the car, hand in hand.

Overheard from behind:

"How was your school, Andy?"
"Fine. We saw bears!"
"Did you play with friends?"
"Yes!"
"How was your day?"
"Good. We saw bears, and lions, and dinosaurs!" (Small boy signs "bear")
"Did you have fun?"
"Yes. Dinosaurs!"


I am currently nursing a scraped lower lip. If anyone finds my teeth, please mail them to...

13 Secrets

Part of the point of this blog is to help parents get away from the fear factor of having a child diagnosed with autism. So I would like to take this opportunity to point readers in the direction of "!3 Secrets Parents Need to Know" over at Wrong Planet (guest written by Autism Diva.) Its a good read.

Recipes

I've been pecking at my recipe site, so I thought maybe I'd draw y'all's attention to it to fish for recipe ideas. Remember- no tomato. :P And No bread would be good right now, too.

Cooking For the Kids

Different plans

My back yard is not really set up for the wild play of small children. Yes, there is a sandbox, and toys; but there are also roses, shrubs, bulbs. There is a yard, but also plantings. The fence needs replacing. The gates need replacing. I wish the boys went out more, but is it safe?

See, the original plan was to spend more time at Grandma's, who lives in the house I grew up in. I spent endless hours out in the woods by the river, rushing through the trees, dipping fingers and toes in the water, pretending to be fabulous creatures and people on wonderful adventures. I climbed trees, ate blackberries, and napped on the goatshed roof. We dug up old glass from a long-burned and gone homesite and pretended to be archaeologists. We swung on vines (poison ivy vines, by the way, and never got a bump until I was in college) and pretended to be Princess Leia being saved by Luke Skywalker. We dripped soft sand through our fingers and pretended to be overlooking new realms and mountain ranges- mostly inhabited by unfortunate frogs that fell to our grasp.

When Mom rang the big shipbell mounted on our porch, it was time to come in. Without a second thought, we stopped what we were doing and trudged back from the green banks of the river and up to the house, to reality again.

If I set Joey loose in the woods, would he return with the sounding of the bell?

I am hoping that there will be a day when he will be able to handle this idea, and return safely to my waiting arms. But that day is not today. Today we still need fenced yards and set limits. We need defined spaces. It was a huge deal the first time I let the boys into the back yard and remained in the kitchen. I watched through the glass door as the boys played. I noted the need for a lockable gate.

I see other children Joey's age wandering the sidewalks, or roaming the connected back yards. We have taken to seeing Joey's schoolmate, Dexter, and that street is full of children who think nothing of roaming between yards all up and down the street. They are free, because they are also reigned. When Mom sticks her head out the door and calls "Dinner!" down the street, her children come. The first time I saw this, especially with the age of the children, I was awestruck with fascination: to watch those little darlings come popping out from yards and- by themselves- safely cross the street and return home, motivated only by the promise of food and prompted by a single call. It was the most incredible thing I had ever seen.

One thing I fervently hope for Joey is- if not independence- at least freedom. I want him to be able to walk down a street and come home safe. I want him to be able to visit neighborhood friends, without even giving it a second thought. He should be able to walk to Dexter's house- all of two blocks- and play there all he wants, then bring Dexter back to our house for some more fun.

But first I need to replace the fence. And the gates. And get these boys outside, so they have their roots there.

A word on image

On Thursday, I posted a series of pictures from the stills and film I took of Joey during a school visit. I have been really happy about Joey's teachers this year, and his so-far steady progress, especially his academic progress. Joey is happy to be in school. He's learning. It's fabulous.

But as the shadow of summer service begins to rear its ugly head, and some comments swim to mind that were made by familiar folks and strangers alike, it strikes me how much I construct a positive image of Joey and Andy here. I chose the picture where Joey is happily playing with the sequence cards, not the one where he is slamming his fists in frustration, trying to put together the words to narrate the story displayed upon them. I have him happily playing a computer game, not the ten minutes later when he progressed up two levels, and tore the phones off his head in frustration because there were now "too many" choices for the memory game.

I am often told, usually in off-hand ways, that Joey's "just can't be" autistic. He's too sweet. He's too sociable. He's too smart. He makes too much eye contact. He has too many words. He is too interactive. I often wonder if people know how really offensive such remarks, even (especially?) off-hand ones, are?

Yes, I know how very fortunate we are with Joey- that there are children who are far more effected, far less "functional", far more "disabled"- what words to use? Because it seems like anything I pick would make it sound like other people's children are not as precious or beautiful as my Joey. Every person is a miracle, folks. Life itself is a miracle. Having a life entrusted to your care is a fortune beyond reckoning. But back to the point: just because my Joey doesn't look or act the way you think an autistic person should look or act doesn't make his autism any less a part of who he is, any less real and here and now. When I see him trying to interact with other kids, and finding himself unable to do it, and seeing the frustration, the yearning, the interest... what? You didn't think autistic people were interested in interacting with their peers? Think again.

There is so much negative written and posted on the web about autism. Joey is such a bright, sparkling light of joy for us, and that is the part we most want to share. I don't hide Joey's weaknesses. I have written before about meltdowns and whinefests and echolallic perserveration. However, I do try to keep these kinds of incidents from dominating this blog, because they do not dominate Joey. And that is just the way he is.

Don't take my snak!

I left Andy crying at school. He's upset to be left with teachers who don't let him take all morning to chew on his food. I have a very hard time getting Andy to eat. Apparently, snack time was over on Wednesday, and that was that- and you don't take food from Andy, even if he won't eat it.

They did say they had no trouble getting him to sit for snack time- but putting the food away is very hard on him.

Since he wasn't sick, I didn't want to stick around and have him cling to me instead of participating in class. But here's hoping I won't be called to the teacher's office after school again. :P

Wordless... Thursday?: A Day At School

A Silent House

Yes, the boys are at school. The laundry is in the washer. The box with teh Christmas tree- the first Chirstmas box- just went up to the attic. The house is... quiet.

Very. Very. Quiet.

No wonder my mom always has the tv going. She probably got so used to us kids running through the house, that the quiet seemed empty.

Now, don't get me wrong. I like quiet. I don't watch a lot of TV on my own, or play lots of music. I like quiet. The soft hum of the washing machine. The whirr of the sonic humidifier. The chirrup of the cat wanting an extra meal. But it is so different than having the boys here.

Hmmm... maybe I'll put on the dvd I made of the boys' fall adventures and get back to cleaning...