Wordless Wednesday: My Boy and Me (Joey)

Update: Mass of Tape

The nurse called to say its hopeless to try the test again, since the tape doesn't stick to my kid's skin (!?!). So I am to use products without dyes or perfumes, and the doctor will talk to me on Thursday when we go in for the needle-test. Neither Joey nor I am looking forward to that test. I have that lidocaine cream they tell you not to put saran wrap on, with instructions to put it on my kid and cover it in saran wrap. Lovely.

A Mass of Tape

Last week in school, Joey had a sudden and dramatic reaction to... something. He turned red but not hot, and got his prickly rash on his back. He normally has a prickly rash, I had it when I was a kid, too. It doesn't itch, it just looks not smooth. But this was a really angry looking prickly rash, enough so that the nurse called, and so we took him over to the allergist. We did one of those scratch tests last week, and he's not allergic to any of whatever they were testing. Today we were to start a patch test. This is when they affix tape to your back with little squares of stuff to see if you have a contact allergy.

So we went over, and they put these tape squares on his back, and proceeded to "reinforce" the tape with more tape, none of which was sticking to his back very well. She kept telling him to stand still to put it on, but the minute he moved, there were puckers and pulls, and I was just not very happy. Somehow in my mind I had envisioned more like that sheet tape they used on me in the hospital, which sealed things in. This looks like a joke.

I was assured he should go to school, but shouldn't bathe. Sponge baths. OK. I should take the tape off on Wednesday and bring him back on Thursday. OK.

I dropped the child off at school, told the aide who fetched him what was going on, and continued on my merry way.

Skip ahead to 3:45. One happy boy hops off the school bus and scurries into the house. I get the coat off, then check his back.

There, clinging to his back, is a ball of mangled tape.

I called the allergist's office. They acted remarkably surprised, as if this has never happened before. I assured them that the nurse placed sufficient tape on my son's back to mummify a rat, but no avail. I now await instructions from his doctor as to our next move.

The good news is his back looks perfectly fine.

I shall keep you posted.

Half and Half

Half happy, half pretending to be innocent...

Thinking of Niksmom

Lying in the dark
Try to take a breath at dawn
Hear my lungs gurgle

Thinking of Niksmom
Hope her week goes really well
Nik is a cutie

Reading my blogfriends
Wondering about playdates
What will it be like?

Andy coughs in bed
Dad gives him cough medicine
Sound of silence

School in the morning
Cancelled for allergist test
Joey will be so sad

Little feet chill me
I rub his back for comfort
Both his and my own


(Have a good week Niksmom. Hope we get some answers.)

Ice

When I was young, this latest storm would have been a whiz-bang of a snowstorm; the kind where everyone (and I mean everyone) would get out their sled or toboggan and head for the local sledding hill, and spend the day going down at lightning speed, back up at a steady plod, and drinking lots of hot chocolate. You knew you weren't going to be in school for a few days, perhaps a week. Slumber parties, popcorn, and rounds of Dark Tower ensued. It was a holiday of epic proportions.

But today, we have a sheet of ice, drizzle, and yuck. The boys are playing Starfall, dinosaurs are on the TV, and the fire won't catch. I am still sick as the proverbial dog. I am thinking about pulling out the popcorn just to cheer everybody up. Maybe I can find some hot chocolate. We can at least have the warm snuggly part of the snowday, right?

Wordless Wednesday: Comic Relief

I still have the flu. So here's some comic relief for you:
I love llamas.

In fond memory

moar funny pictures

My first icanhascheezburger pic. In fond memory of our Puma Girl.

Make My Day

A big thank-you to Maddy for this lovely award. I just gave out an award to the blogging folks I would normally pass this award along to- including Maddy herself- so instead I am going to take a time-out to recognize some not-blogging folks who "make my day" especially when I am down, out, and ready to cry.

First and foremost, I'd like to award this award to my husband, Allan. I don't really talk about Allan much here, because I am mostly focused on the boys and the times when poor Allan is slaving away in the salt mines to keep the roof over our heads, the food in our tummies, and the therapists providing service. But I am one of the luckiest women on earth to have a husband like my Allan. Here is a man who sees his tired wife at the end of the day, and offers to order pizza. This is a man who does laundry and dishes. This is a man who loves to wrestle with his boys. This is a man who thinks nothing of putting his sons to bed, and sitting with Joey until he falls asleep. This is the man who has put off putting Joey back in bed when he creeps into our in the middle of the night, because he won't be little long, and he's so cute! The fact that I married him just proves how clever I really am. ;)

This award also goes to my mom, who loves to take me to lunch (and the boys!), who is always here to remind me how much leeway to give my guys, and what normal looks like. My poor mom got a good dose of my life over the weekend when we went to the chocolate store, and Joey felt the need to push the cart down the aisle at top speed- with his brother in it. Trying to keep those guys contained was nothing less than monumental. After all, they were literally in a candy store! And yet she managed it, so I got two minutes to pick out some chocolate. She gets me through the day.

I also want to pass this along to my friend Christina. Every once in a while I actually get to talk to her. She sometimes shows up at my door with chai. Despite her own challenges, she is always genuinely happy about our little triumphs- and our huge accomplishments. She always tells it like it is. And besides, she has the wonderfully cheerful shade of brilliant red hair (natural!).

This goes to Janine, who has helped Joey through thick and thin, and even let me foam at the mouth (and foamed with me). Thank you for caring about Joey. Thanks for being a great OT. Thanks for being a bright point in our week.

Also to Anne, who shares her sanity every other week. I always look forward to seeing her smiling face, and hearing her gentle voice, and know I'm not the only one out here doing all of this. Also, to her kids; her daughter who shows such patience with Andy, and her son who has become such a great Tuesday Buddy for Joey.

Thanks for making my day.

Addicted

I have the flu. I need to go to sleep. I need to stop checking email from my students and go to bed.

Museum Day

So we went south to the Virginia Discovery Museum. Its a really great find if you have young children and are in Charlottesville. Not such a big deal to drive an hour and forty to specifically visit. If you're headed to Monticello, and the kids look bored, reward them with a stop in.

It has lots to do in a small space. There are train tables, machine to explore, dress-up stages, art rooms, a log cabin, and even a guinea pig. There is a special room just for toddlers with climbing equipment and lots of small exhibits for hands-on exploring. In the back there is an exhibit that changes; right now it is about Native Americans. And all the way back is a rel bee hive, the kind you can look for the queen bee.


It is all really exciting, and noisy, and lots of kids having fun. Everything seemed well-maintained, which is to be expected for $4 a head. The noise was a bit much for the guys, but we found the quiet spots- the loft in the log cabin was a favorite, because there was a window up there, so JOey could get into the light. The back room was quieter, too. Everything was interactive, so kids at several different levels could learn something from everything, without it being boring for parents. The space a bit small, though.

Joey resorted to tracking as he wore out, which was a little disconcerting. trying to talk about Native Americans or native Virginia plants or anything proved fruitless. Once he starts tracking, he's done. Maybe the next time we go for a Kluge day, we'll stop in again and bite off another small piece of learning...

Up, Down, All Around

Life is a roller-coaster. Mine is a bit of a wildmouse. But then, i can never complain about being bored, right?

We have the new speech evaluation in hand. Evals are both good and bad. Its good to have a firm picture of Joey's strengths and weaknesses so we can consider options and plan supports and interventions and needed services, such as upping speech therapy or asking the school for more service. However, it also means we have Joey's disability laid out in black-and-white numbers, which cannot be ignored. To us, Joey is... Joey. On paper, Joey has a moderate-to-severe communication disability. It's never fun to see it laid bare.

Something happened at school today, and we don't know what. We do know something happened, because Joey came home on the verge of meltdown, and won't talk about school at all- the big red flag that something is not right. He wanted to ride his bike, but he wanted to ride it off the deck- as in, down the stairs. I don't think so. So he then tried to run over his brother. He was asked to stop riding the bike. Instant meltdown ensued... for an hour. What the...?

On the good news front, Grandma arrived and I got to go out to dinner with my husband. The last time we got to go out was... neither of us can remember. We've been wrangling about "when did we last go out?" for a few minutes now. Was it my birthday, 2006? Surely we managed to go out over the summer once? But it is lost to the mists of time. Aren't we supposed to be having weekly dates? Or monthly? Or at least annual? The food was good this time. The company was fabulous. I hope he asks me out again.

Happy Valentine's, Part Two

Happy Valentine's Day!

FAQ

I've been getting a lot of questions about Joey and Andy from people and email lately. Probably that "Yes! You Can Ask Me About Autism" bumper sticker on my car... but anyway, for those folks bouncing around, here's the scoop, in no particular order:

What is Joey's diagnosis? Joey is autistic.
Does Andy have a diagnosis? Andy has sensory integration dysfunction or sensory processing disorder, which are terms often used interchangeably, and are definitely used interchangeably by his therapists. Andy is not autistic.
What is Joey's functioning level? Joey is considered "high functioning." Which tells you exactly nothing. His main issues are expressive communication and perseveration/ritualistic behaviors. Joey is currently unable to function in a normal classroom environment without support.
Is Joey's autism regressive or non-regressive? Non-regressive. Joey was born autistic. He did not lose skills, and displayed autistic traits from Day One (possibly earlier).
Is Joey verbal or non-verbal? Although Joey has very severe expressive communication disabilities, we consider Joey to be verbal.
Did vaccines cause Joey's autism? Do you believe vaccines caused Joey's autism? No.
Does Joey receive ABA? Yes. He presently has one two-hour session of ABA to work on skill generalization and communication.
What other interventions have you implemented for Joey? Joey is in public special education. He also receives private speech therapy, private occupational therapy, and takes music lessons.
Is Andy in therapy? Yes. Andy had private speech therapy and currently has occupational therapy.
Why isn't Andy in public special education? Andy is not disabled. He has issues with sensory integration, but is able to function in a normal classroom environment.
Are you autistic? No.
Is your husband autistic? Is anyone else in your family autistic? No.
How did you know Joey was autistic? At age two, Joey did not point and did not speak. By two and a half, still without pointing or speaking, we took him to a speech pathologist, who informed us that he was either profoundly autistic or profoundly deaf or both. He was proven to not be profoundly deaf, so we went to Kluge and saw Dr. Blackman, who diagnosed him as autistic.
How did you get Joey to speak? I wish I could hand folks an answer to getting children to communicate, because I am pretty sure folks who ask me this are looking for that magic bullet. I get asked this a lot. So I just want to put on the disclaimer that this might not work for everybody. However, our breakthrough came through sign language. When the SLP handed us the "deaf or autistic" verdict, we decided any communication would be better than the nothing we had. We bought Baby Babble, a dvd intended to help kids learn to talk. What he learned with the sign for "more." Armed with this new way of getting cookies, bubbles, and anything else, Joey discovered there were ways of getting needs met that involved making sounds or gestures... language. Clever little thing that he is, and the great lover of cookies, bubbles, and getting Mom and Dad to do stuff, he started trying out these new things called "words." Six months later, he had about 25 of them to use. A couple years later, we became fans of Signing Time, which gives him lots more signs to use and to help him understand what others are saying to him (as well as giving us signs to use with him!) Yes, we recommend trying this visual and kinetic means of communication if your child is having trouble with expressive speech.

I'm sure I'll get lots of new questions and feel the need to do this again, but I hope this helps folks in the meantime!

Blog Love

My pal Monkeygirl made an award just for me that I can pass along and start a new award thing. How cool is that? Even better, there's no meme or strings or anything attached. I get to just say, "Hey, you're one of those folks that sees the beauty in things!" and then you get to tell all your friends how cool they are, and so on and so forth. And you'll all give it to cool blogs I've never read before, and then I'll have lots of new folks to read about. Woo-hoo!

So I officially bestow the brand-spanking-new "I See the Beauty Within" award to...

Stimey, Niksmom, Casdok, Joe, and Maddy, who are my regular reads because they "See the Beauty Within" in the first place. I can't possibly have an award like this to give out and not make sure they get one.

Besides, I can hardly wait to see who they choose to send it along to... I don't read enough blogs.

Guessing game

Andy has a guessing game for you. He is in search of his "scoopin." A Scoopin is black, it eats bugs, and it has two legs. It is somewhere in his room, but not under the bed, because we looked there. It is and is not an animal. It is not a bug. It is not a person. It is not a spoon. It is not a dinosaur. It is small, baby, not big.

I have actually figured this one out, so i will leave you the fun of guessing before I give you the answer.

Beautiful Death

There isn't much that makes me freak out in nature. MIce are cute. Snakes don't bug me, bugs are just part of life, spiders don't creep me out.  

Except this one. I do not like black widow spiders.

They're absolutely beautiful, don't get me wrong. The shiny black, the elegant curve of the legs, the shocking bright of the red hourglass. They are amazing things. Heck, I took photos. I think this is the first time I've seen one live, and certainly one this big. I also did not realize they were lair spiders.I just had never thought about it; I just assumed they were web spiders.

The lair was amazing. She had been living off a colony of ants that were living in a stack of mulch bags I hadn't managed to get spread, and had done quite well for herself. I knew they got this big, but I certainly had never seen one so large; with her legs out, she probably would have taken up most of the palm of my hand; I'd say her body was about the size of a quarter. Magnificent. 

But I am sure you are all happy to know she has joined the Choir Invisible. I don't kill spiders as a rule; they are very useful creatures, beautiful, wonderful, and they eat ants, which is a huge plus for me. I do hate ants. But one cannot have black widows overrunning the basement here with my little guys. 

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...

MLK

Tomorrow the boys have off school for Martin Luther King, Jr. Day. Joey's school has been sending around lots of booklets and stuff about Martin Luther King, Jr. and his Dream: specifically, that children of all colors can play together.

I know that's what the words of that speech say: that the color of your skin will no longer matter. But I'd like to think that dream goes far beyond that. I'd like to think that the point was equality- that people would be seen for their strengths and talents and gifts, that they would be considered based on themselves, not on what we see. That the Dream is for an appreciation of true diversity of all kinds, not just a diversity of skin tone.

In other words, I think this literature ought to be talking about diversity, acceptance, and freedom for all people. Not just about what color peoples' skins might be. Even the special ed stuff is all about children of all colors, people of all races. What about accepting people with disabilities? What about actually looking at those differing cultures, not just the skintone? What about accepting people of different ages? Shouldn't this little booklet say "He dreamed of a world where all children could play together" not just "a world where children of all skin colors could play together"?

The here and now for Dr. King was focused on race, and thus his words were focused on race. But I'd like to think his intention went far beyond his moment. The point of the Dream was for people to discover that judging others on superficialities was not appropriate, not useful, and just plain ignorant.

And if it wasn't, well, then here's the new Dream. Cheers.

More school

I got to go see Joey at school again today- this time with his morning teacher, Mrs. H. She's a very different kind of teacher from Mrs. S, and is doing different things- and that's good. Between the two of them, we have a compliment of skills and styles that is really doing great things for my Joey.

We've noticed lately that Joey is tossing out a lot of word salad. His sentences and speech include words that are relevant to the topic, strung randomly together. This may seem like a complaint, but it isn't. We notice it more because he is talking more- and talking more is good. Relevant words are good. And the salad is because he is not echoing those words, but trying to construct his own speech. He has an easier time with it when he's calm and focused- more salad when he's excited or frustrated or tired- but the words are out there.

Joey greets his classmates by name. He even tries to greet his Sunday School classmates by name- before they greet him. Initiation is good (shame it isn't often positively reinforced by other kids).

Joey is answering questions. Not always correctly, or even willingly, but the answers come out. He was especially frustrated today because he was working on sequencing a set of story cards, and then narrating the story. He got the cards sequenced (YAY!) but then got frustrated with the narrative. It was like, "I got the things in the right order, what more do you want?" he was done and wanted to move on to something else, instead of finishing up the details. He knew what the story was and what it was about, and didn't want to expend energy telling us what he knew we already could plainly see. But he got through it. He did it.

He's reading on a first-grade level. We know from the software the school uses for special ed and ESL language teaching that his receptive auditory processing seems to be quite good- he can differentiate sounds and match them and that sort of thing. His receptive language is really coming along. Now, we just need that expressive language... apraxia, hie thyself to the hills!


Katie McCarron would have been in school today. She probably would have been able to circle the "pl"s in the poem Mrs. H read. Perhaps, like my Joey, she would have gotten frustrated with the card sequencing- perhaps the sequencing itself would have been a problem? Or the narrating? Then, like my Joey, she may have turned to a computer software game or a favorite activity for her break. Had she lived here, she would have lunched early, because the Russian ballet was coming for an afternoon assembly- I bet she would have liked to try to dance, in a pink dress and a flower in her hair, just like the pretty ballerinas did at school. After all, Katie would be a kindergardener this year.

Thinking of you, Katie.

Winter Fun!

Wordless?

One thing I keep noticing is the use of the terms "verbal" and "non-verbal" when referring to children with a variety of communication disorders, including autism. We just had a SPED meeting, so the use of it bouncing around the bar (we all go out and debrief afterwards- usually over beer. This time we had lots of non-drinkers, so hot chocolate) brought it to mind again.

Depending on how you use the term, Joey is verbal. Or Joey is non-verbal.

Joey is on the brink of language. He has lots of words to use now, and is stating to use it pragmatically and conversationally. He reads, he talks, he answers some questions. For a lot of folks, this is "verbal."

However, his pragmatic and conversational language is limited. Most of his speech is nonsense, echoed, scripted, or perseveration. He runs out of words and has to turn to other forms of communication. He prefers visual communication to oral communication. We began our adventure with a child who had zero words. For a lot of folks, this counts as "non-verbal."

What it brings to the fore is the inexact use of language when trying to discuss disabilities and abilities.

I often have heated discussions of the word "myth." In common use, this term implies falsehood, even deception. Stories taken as true which are really not true. Stories that refer to explanations of things we don't understand. However, in many academic fields, including mine, "myth" is not about falsehood. Myths are narratives that refer to deeper truths using mundane language. Myths are intended to be read "on the slant"- they hint and provide glimpses of Truth in terms humans can use; using inexact human language, these stories point to the workings of the cosmos and our role within that larger Being.

Having a conversation with another person about myth can get interesting, especially if we are using these two related, but significantly different, meanings for the term. We start gibbering in nonsense, like a passage from Alice in Wonderland.

For me, Joey being verbal or non-verbal is a matter of getting him speech service. To me, he is verbal. This qualifies him for speech services in this city. Thats what labels are for- guiding us in what services he might need. The whole autistic, verbal, ritualistic, disabled thing is not about Joey; but they are labels and myths that guide and point us to think deeper about who Joey is, how he is experiencing the world, and how we can support him.

For the difference, between "help" and "support", I refer you back to my good friend Snail. Snail wants to be supported, not helped all the time.

Yes Indeed

I love For Better or For Worse.

And how was your day?

An exciting day here! Andy started his new school. He was SO excited.

So was Joey. He overheard me talking to Andy about going to school, so he woke up this morning saying, "Andy go to school today!" and was completely confused when I didn't wake Andy up or put him on the bus. He took it in stride, though, and apparently had a good day.

He hopped off the bus and into the arms of Andy for a big hug; and as they went in the door, Joey was saying, "Andy! How was your day?" And Andy babbled something about dinosaurs that I couldn't understand, but Joey seemed to know exactly what it was.

What a day!

Nine Hours

In Nine Hours, my baby will be once again starting school.

Three days a week, I will have about two and a half hours to run around doing things that are better done sans kids. Cleaning. Shopping. Research in the library. I already have this week booked, lest there be no week 2, like last time. First morning helping mom with the business books. Wednesday a visit to Joey's school. Friday, my friend Christina and I are going to paint the town red (who let us loose on an unsuspecting world?) I guess putting the Christmas decorations back in the attic will have to wait until next week.

I wonder how many times I will use that formula: x will have to wait until next week. Seven and a half hours to get things done. How quick can I fill those precious minutes?

Ah yes. Dreams of time. When I get caught up to myself (oh HA HA), I am going to do a little stitching, maybe brush up on some cooking. I will work on the blog and website projects I have been putting off. I'll get the downstairs bathroom finished, my own bathroom finished, maybe get the dinosaur curtains made for Andy and completely re-do Joey's room. I'll clean out the hall closets. I'll get my own bedroom to rights- or at least carve a walkable path through it. The garden will get mulched and weeded, and a new lockable gate installed. Time.

Nine hours from right now, my little baby goes off to school. I will have three fewer morning a week to go to the farm, or wander around Walmart with him, or watch dinosaurs with him. Three less mornings a week to take him to the gym, and split a milkshake after. Three less mornings a week of his hugs and kisses and demands for dinosaur snaks.

Nine hours.

And counting.

Update: The Decision

Andy starts school on Monday. He liked it Thursday, he loved it today, and so we have decided to grab the slot and get him going. He will go three mornings per week. I'm still looking for another place for the fall, but this school is supposed to be the best in town. We'll see what we see!!!

And the baby sleeps in

Gotta love it...

So while I have this silent minute, I shall share it with you. Peace. Quiet. Why am I not napping?

Our dilemma this week is Andy and school. We looked at a school yesterday- it was ok, had lots of space for him to run, lots of movement. I was looking for the fall, but they have a space right now. As in, he could start on Monday.

This was unexpected. Most schools have long waiting lists, and this school is famous for having a long waiting list. Do I try to scrounge up the $200 and send him right now, or do I stick to the original plan of trying to work some extra hours to raise up the money to send him in the fall?

I will be looking at other fall schools, too. I'd like to get him prepped for kindergarden, and this school isn't the most academically-oriented school in town. However, I'm not sure which one is, and we still need to be sure we have a good fit for Andy. the best school on the planet is useless if Andy isn't happy there.

He sleeps on.

Wordless Wednesday: Dinosaurs!

Children in restaurants: Part II

We're back from our foray into the world of eating venues. We did try to eat at Cracker Barrel, because my aunt, uncle, and cousins prefer it; but luckily, there was no room at the inn for an hour. For those of you who like "Cracker Barrel", please note we do not. I don't know if this was a national problem, but around here there was a mighty scandal about how the local restaurants fired people if there was even a rumour of them being gay, and we are just not happy with giving a place like that money. They also have a bad track record around here of serving anyone who is not white and of... you guessed it... throwing children out. Sorry, I just don't see "Cracker Barrel" as an "adult" establishment, especially when they have signs all over the place proclaiming themselves to be "family-friendly" (and that's the excuse they gave for their blatant discrimination: We're a family place!")

That's right- shock of shocks. Places that call themselves "family" restaurants are places where I believe people should expect to find children eating. Never forget: Disney advertises itself as a family destination- even it's posh hotel. So be prepared to go there and find families.

Back to our adventure. So we cheerfully left the Cracker Barrel under the scowls of the hostess taking names after telling her not to bother putting down ours (lady, you just told us that these four kids would have to wait an hour to eat lunch, and then were shocked we didn't stay when this town is full of restaurants? You've got to be kidding me. But now we have "rudeness and poor attitude" to add to our litany of reasons not to go there), and took them instead to one of our favorite places, George's Pizza.

And it was a delightful time had by all.

The kids grabbed a table by the window, and Joey and Andy were having such a good time with their cousins that I didn't have to actually sit at that table, we happily and comfortably sat with the adults at the next table- though admittedly, I selected the chair next to the boys, because you never know when supervision needs to be tightened. No one ran around. There were no screams, no throwing of items, nothing that disturbed anyone. The one other party who was there left without incident or disturbance about halfway through our meal, having enjoyed theirs- even with our kids giggling together and eating their meals. Joey had a mouthful of pizza, but still doesn't like tomato. Andy actually sat on his chair to eat his salad and some pizza. The cousins enjoyed the fresh audience for their latest jokes. Both of my guys laughed themselves silly.

A big difference from Joey being told to "go away" by his classmates, or the idea of limiting the time a family can be in a "family" establishment. Acceptance for who we are. As we are. And giving everybody room to grow.

Children in restaurants

As I prepare to take my kids out to lunch with my aunt and uncle and cousins, I have noticed the internet seems very chattery about the place of children in public, particularly in eating establishments. Disney's Victoria and Albert's has decided to ban children to much applause from folks who do not have children. An English pub chain is limiting parent drinks- alcoholic or otherwise- to limit the time children are in the facility. Where is it appropriate to bring children? How does one teach a child how to behave in public if they are not welcome in public?

I will admit these seem to me to be two different issues. Disney World is a park designed for children, and marketed to adults for childhood nostalgia. It seems a perfect opportunity to help train children how to behave in an upscale environment (after all, if you don't want kids, there is a whole section of DisneyWorld reserved for adults only). English pubs, from what I remember of being in them, are a bit different. Many are more like local bars, others are more comparable to an American Ruby Tuesday or Outback Steakhouse; where it is a restaurant with a bar area.

But the sticky issue is really what to do about children in public, and the various parenting styles we may not agree with. I certainly don't let my kids run wild through restaurants, but they do stand and wiggle, and I remember as a young child going on "adventures" where my brother and I would wander around the room and look at things like fish tanks, wall decorations, and cozy corners behind my mom's chair. People who think children should sit quietly in the chair for an hour and say nothing are just fooling themselves. But should they ban my child from the restaurant? I see no reason to limit non-alcoholic drinks served to a parent, no matter where they are. If families are not welcome in your pub, put out the "adults only" sign and be done. And if my business is too important to do that, why insult me by saying I can't have another drink if I want it?

I find screaming children running wild as annoying as anyone else, but how will children learn to behave in a restaurant if they are banned from them? Sounds like we're asking for more of those annoying, rude adults we see who can't use inside voices to speak to their companions, chat on their cellphones, are rude to waitstaff, and otherwise can't seem to behave in public.

On the other hand, there is value to a quiet dining experience. Funny, when I want to go out without kids, I wait until the kids are in bed to go out. But why should people who have chosen to not have children have to plan their lives around children?

So I'm all for adult-only establishments, as long as they understand they will not be getting my money. If you don't want kids in your pub, say "no children." If you don't want kids in your restaurant, don't build it in the middle of a kids' theme park.