Happy Birthday Joey!

When I was one,
I just begun.



When I was two,
I was nearly new.



When I was three,
I was hardly me.



When I was four,
I was not much more.



When I was five,
I was just alive.



But now I'm six,
I'm as clever as clever.



So I think I will be six now,
forever and ever!

-A.A.Milne

Nothin' says lovin'

Like baking 50 cupcakes in the dead of night for a boy's birthday in the morning.

Actually, blueberry muffins, which will then be frosted with vanilla frosting dyed blue, then set with blue sprinkles.

Happy Birthday, Joey. I love you.

Sick day

The boys are home. Joey was complaining of tummy trouble yesterday, so I went and got him from school. That came with a nasty fever that broke early this morning. Now I just have two sniffle-heads. OK, we really have all four of us sniffling, but I'm the mom, and poor Allan had to go to work. :P

So I have two sniffleheads. They feel OK enough to want to play, but they get tired out easy and that makes them grumpy. So instead of getting them up and down the stairs, I have left them in their pajamas, and brought breakfast upstairs.

Now, I am not a gadget woman, nor a big TV viewer. My husband, however, is all over it. When he got his nice, big bonus this year (because he is an awesome worker and got awesome reviews), we got ourselves our anniversary present: an Apple TV. I was unsure how this gadget would be any better than the other gadgets we have, but it made him happy, and that was the important thing. But now, I would just like to say, thank you, JoeyAndyDad, for our AppleTV. We have spent a deliciously restful morning in the bedroom, tucked into Mommy and Daddy's bed, watching Oobi on the fancy TV. The boys are getting much-needed rest, we've only had one whining spell, and everybody is happy. We are sipping our juice boxes, no one has waxed, and we have smiling faces, despite still having fevers and sniffles.

Now I just need to find a couple pairs of google-eyes for two boys who want to play Oobi...

Discipline and Getting Older

Andy is a little under the weather. You'd never guess this from watching him rollick on the floor with his brother just now, causing Joey to erupt in cackles and giggles. But two hours ago, Andy was zonked out on the couch.

So there is my three year old, curled up on the sofa with Blankie and Mr. Guinea Pig when Joey decides the funny thing to do is to imitate the dryer sound (a loud, long buzz) at top volume. As intended, this noise woke Andy. But then he started to scream and cry- the poor kid couldn't believe anyone would mess with him when he was feeling so bad.

So, amidst the wails, Joey laughs. I order him to his room for a timeout- both to punish him and more importantly, restore some quiet to the room. I get "No, I don't think so."

This was not Joey's first trip to his room this afternoon. On our first trip, we talked about apologizing and what it meant. I modeled that when you apologize you mean that you're sorry, that you wish you hadn't done or said whatever you'd done or said, and that you'll try not to do it again.

So we went up for the second time and Joey was already scripting the usual "I'm sorry". Why? "Because Daddy's mad." Right. The previous lesson clearly had not sunk in. The time out rules this time were pretty strict- stay in your room, no toys, and most importantly, be quiet.

He was never really going to follow the third instruction, but I did want him to stop screeching at the top of his lungs, since we were right above where Andy was attempting to sleep. I went downstairs, and after about fifteen minutes of sniffling and wailing from above, returned to see what he'd learned.

After he calmed down, Joey said, "I'm sorry for Andy. I won't make dryer noise anymore." Wow. We walked through what happened again, focusing first on how Joey's noise made Andy feel, and then about how Joey was upset because he got punished and also that Andy was sad.

Andy's still at the age where he thinks simply saying he's sorry makes it all better. It seems like Joey is outgrowing that stage, and part of it is that he understands others' feelings more completely.

Bake Sale

Several of my friends, both live and online, have been having issues with getting much-needed equipment to help their kids. Communication devices seem to be particularly difficult to lay hands on. Just as people tend to assume that kids who cannot speak (or worse, cannot speak properly) are stupid, they assume all communication devices are alike, and just grab whatever and go. Can't you just pick a button and push it?

It is enough to tear one's hair out.

It's worse when the person showing this ignorance is your insurance company liaison. Why? Because they will block the money you need to get the right device your kid needs, and get it ASAP so the poor child can start proving they aren't an idiot communicating.

I have placed the suggestion several places that we should have a bake sale and buy these things ourselves. We know where to get them. we know how much they are. We're just broke. Don't know how that happened, with school and therapy and other equipment and whatnot. I fear some folks thought I was/am being facetious.

I am not.

We should get together and have a big, world-wide bake sale. We should advertise it. We should all news outlets and tell them what we are doing and why we are doing it. And we should then publish a big cookbook to continue the project and keep some cash rolling in.

This government thinks little of funding wars, bailing out companies, "fixing" messes others have made with money, but heaven forbid we be trying to make our kids independent, support our kids in their needs and goals. Many of these friends would love to even have a clue what those self-goals are, but the kid can't communicate- because they need the %^#@ device the insurance person says is "not necessary" or not from the vendor they like.

Having me sit here and cuss isn't getting those devices to those people. A bake sale might.

Who's in?

Ah, Awareness Month FAQ

Whenever there's a bit of a news blitz about autism, we get snowed in with the question, "What causes autism?" Desperate parents with new diagnoses. Family members who are curious. Friends who haven't moved beyond that. Other parents who like to toss around old questions. They all want to know: what caused Joey's autism? (Sometimes I think they are really asking, "Did you cause Joey's autism?", but perhaps that is for another blog post...)

We have no idea why Joey is autistic.

Vaccines did not cause Joey's autism. He was autistic before he was ever vaccinated. He was autistic from birth. None of his vaccinations contained thimerasol (did I really have to just type that again?) He did not show any adverse reaction to the MMR vaccine.

We have no family history of autism or anything that would now be diagnosed as autism or asperger's syndrome, so far as we know or understand. We do have family history of what is now called sensory integration dysfunction.

We did not have a "normal pregnancy." I went gestational diabetic with both pregnancies. I only had insulin with Andy, not Joey. Joey did briefly go into "distress" and was born by emergency c-section. Both babies has jaundice (Andy's was far worse than Joey's). I also lost 40 pounds over the course of each pregnancy (never fear, I found them all again).

Joey's head grew normally.

Joey does not have any signs, nor has tested positive for, PST deficiency.

Joey has testing negative for any heavy metal poisoning.

Joey has tested negative for food allergies and respiratory allergies. He does have some kind of contact allergy, most probably to floor or carpet cleaner and related products.

Joey was not sick a day until he was two years old. He then had a mild stomach bug, for which no medicine was required. He did not have so much as sniffle before then. The only medication he received before he went to school- including aspirin, ibuprophen, tylenol, antibiotics, cold meds, etc.- were any drops placed in his eyes at the hospital, numbing gel for his teething, and neosporin for minor cuts. He was autistic before receiving any of these medications. He did not have ear infections until he started school. We did have two days of a yeast issue in breastfeeding, but no yeast infections on his part (just on my part).

Joey shows no sign of seizures.

I have never smoked, nor does anyone living in my home. I did not drink during my pregnancies.


So I have no idea why my son is autistic. He is. I'm sure there are plenty of other theories popping around. Ultimately, God made him this way. God made me to help him learn to cope, survive, thrive, flourish, and enjoy life. Then He made Andy. He did not make Andy autistic. He made me to help Andy learn to cope, survive, thrive, flourish, and enjoy life. And we are having the time of our lives.

Sunshine and Roses

I've been getting a lot of emails and calls lately to the effect of "I'm reading your blog, and you have got it so good!!! Everything is going so perfect for you! Your boys are so smiley all the time, I am so jealous! No tantrums, no problems, everything there is just sunshine and roses! So get off your butt and go do some work or something! Quit complaining like a brat when I call/email/see you!"

So, for those avid readers who have noticed that my blog emphasizes the good times and achievements of my wonderful, beautiful, smiling boys, I would just like to say: you are absolutely correct. We have come a long way, and we continue to make strides. I am very proud of the work both of my little guys do- they are two of hardest working little guys I have ever known. We have gone from a non-verbal child to a child who can have a basic conversation about his day and his life and his needs and wants. Just in this blog alone, we have gone from utter shock at a sentence to cheering on a whole presentation complete with question-and-answer session. We have gone from screaming frustration all day long to the whine and occasional meltdown. Joey is growing up, learning to regulate himself, learning to communicate. The frustration is ebbing. On the other front, we have gone from "normal" to sensory dysfunctional, and are now well on our way back to fully functioning in regular environments. We are through a food strike, back into normal "picky eating." We have stood at the brink of a real problem with speech and behavior, and found a path away (called "therapy and school"). Andy is also growing up, and the energy is getting some real guidance.

So is my life all sunshine and roses? Well, in some ways, yes it is. Two beautiful boys, lots of hugs and kisses, sunshine in the back yard and food in the fridge actually being consumed.

And in some ways, it's not. We still have our finger-biting and smack-on-the-chin problem, for example... and Andy imitating it. And the latest crazes in my house? Loud choruses of "Weave me AWONE!" racing through the house, especially if I have just asked a child to perform a non-preferred task or stop a dangerous activity. The word "No" bounces around here a lot, too. Sound like normal pressing of limits? Come around sometime. You're not getting the full effect. Joey tends to flail more than he used to, incorporating the behavior of some of his classmates. Trying t share new experiences with Joey is always a challenge- to pull his interest to something new, to focus on something new, to explain it when he has neither the ability to focus, nor the language control to make what you are saying relevant to him, can be very frustrating. Getting that joint attention, crucial to being able to teach and learn, is a real challenge- and all the more so because you forget he has trouble with it. He's not off in his own little world, he has pretty good eye contact (not great... but passable and reasonable), he certainly expresses interest in videos and in things around him, just never in a way you expect. For example, he likes tractors and animals, so we took him to the Oxon Hill farm. In the museum part is a display about butter. Talking to Andy about how milk comes from a cow and is churned to make butter- in most elementary terms- no problem. Wow, milk comes from a cow, now let's go look at a cow. Connections made. But Joey? He can't focus on the churn, the words you are throwing at him seem to be a jumble. He caught the sign for "milk" and "cow" but then wandered off, too uncomfortable in the unfamiliar setting to pull himself away from tracking the floor tiles. The cow was mildly interesting, as it was alive and moved. But somehow I failed to teach him the lesson I intended, connecting cows and milk, to start building understanding of food, consequences, sequences, cycles, etc. This is very frustrating. Remember, I'm a teacher by trade.

Besides, I want so much to share the world with him. Living is so wonderful! It is so full of everything! I don't so much mind following his lead, as I get frustrated trying to constantly figure out what that is, and being unable to provide proper guidance for my child, when part of the job of a parent is to guide, to introduce, to share. I am sure this feeling turns to fear, anger, and despair in others I see trying to raise autistic children. What shall I do with it? It's not a sunshine and roses question, though the resulting answer could very well be, and usually is.

And on our other front? Well, he's almost four, and just now emerging from the Terrible Threes. We've had them pretty easy, because Andy's a sweet kid by nature, and had Joey to guide him. He still wakes up grumpy, he still prefers to stand to eat (or just jump around instead of eating at all), still gets into bickering and fighting with his brother, still is testing his limits and boundaries. That's no sunshine or roses either... in some ways.

Yes, there are still challenges, both theirs and mine. Life isn't always sunshine and roses, but it sure feels good and warm on my back and the garden is full of perfume. I like to sit out on my new chaise sometimes and breathe it in.

Wordless Wednesday: Home to the Farm

(This is "home" because my family is from Oxon Hill. My great-grandfather actually worked the Oxon Hill farm before returning to Falls Church. I still have family nearby.)

Happy Autism Awareness Month!

Sick again

Sorry, folks, I am once again down with tummy bug. Trying not to wax. Will keep you updated. Unless I wax.

Back to school

Spring break is over. I had to put my boy back on the bus this morning. then I had to take the other one over to his school. Now I sit at mom's office, poised to begin my career as "webmaster"... with no boys playing in the background.

Sigh.

Surprise date

So Mom walks in about four o'clock and announces that we are going out to dinner. "We" being me and my husband. By ourselves. Just because... well, Grandma feels like watching the bairns. God Bless Grandma.

After few minutes of settling boys (quite the feat- this is the end of Spring Break, and Joey is definitely ready to go back to school), we raced out the door and into the car. We toyed for a minute with the idea of going to France. Or back to India for a spell. Las Vegas would do. But we decided to just go on to dinner instead.

We had three Indian places in town for a moment, and it was lovely. But the one I liked closed down, the second one the food was terrible so it closed, and now we are left with only one. We decided to chance it. Ah, mango lassi and lamb korma... yum yum yum. It turned out great. We ate, we chatted about possibilities for the future, we came home.

It lasted an hour and a half.

We need to learn to take our time. Maybe drink more. Breathe.

Knock-knock: Joey style

"Knock-knock."
"Who's there?"
"Blue."
"Blue who?"
"We are crying."

"Knock-knock."
"Who's there?"
"Yellow."
"Yellow who?"
"Knock-knock."
"Who's there?"
"Yellow."
"Yellow who?"
"Yellow is not orange."

"Knock-knock."
"Who's there?"
"Red."
"Red who?"
"The cherries are red."

"Knock-knock."
"Who's there?"
"Red."
"Red who?"
"Knock-knock."
"Who's there?"
"Blue."
"Blue who?"
"Blue is the crying."

Hey, he's trying... and at least he's understanding its supposed to be funny.

Knock-Knock jokes are one of those things most parents take for granted, and just "suffer" through the early years when kids are playing with language. Here, it's speech therapy.

We are very, very proud of him.

Wordless Wednesday: Williamsburg

An excellent morning

Although Spring Break started on Friday, today was the first day Joey realized he was on holiday, and not just one of those funny Friday-off weekends school sometimes has. He's going to be home all week. I had to think fast. How to help him get through an entire week with no schedule? One day at a time...

Today's solution was the pool at the gym. Our gym has a lovely children's pool, and its rarely used, especially in the morning. I can see both boys at once, and no one can get in over his head.

Usually, this venture is an adventure. Go to gym, get two small boys into dressing area before clothing removal commences. Get two small boys into swimsuits. Get mom into swimsuit. Gather clothing from all over the room, including the sink and toilet. Get towels at top of bag. Get children to swimming pool. They usually keep their suits on OK. Breathe while they play. When it is tim e to go, transition appropriately to avoid meltdowns. Begin at least 15 minutes before you really need them out of the pool. Herd small children back to changing area before removal of bathing suits commences. Get wet bathing suits off of small, wet bodies. Get own bathing suit off. Chase down small, naked children who have escaped back to pool area. Hope you have suit still on, or towel handy when this happens. Hence, I always get dressed first to minimize opportunities for escape while mommy is still naked. Get two small, wet bodies back into normal clothing, without anyone slipping and hitting head on wall or floor, or water from sink flooding same floor. Gather up towels and suits from all over changing room, including sink and toilet. Herd small children back to car with various offers of positive reinforcement.

I have noted this exercise and its delights before, much to my pain and a mountain of unfortunate email comments (to the point I had to remove one of the posts). However, I have considered the work worth it, because both my boys LOVE the water SO MUCH. Ecstasy is the emotion when I announce to these two, whilst they bounce upon my bed this morning, that we are going swimming today. Pure bliss.

Today, I was rewarded for my generosity. Two boys entered the gym, and headed to the changing area without losing any clothing on the way. They patiently got into their swimsuits, and gathered their own clothes and put them in the bag. THEMSELVES.

Then they walked patiently out to the pool, and commenced immediate fun.

And it got better.

Time to go? No problemo. Five minute warning, ONe minute warning. One countdown and one count up, and they were out. Very impressive. All the way to the changing room, no lost clothing. I spread a towel on the floor, and they patiently sat criss-cross-applesauce waiting for their turn to get out of wet clothes and into dry ones. They sang the ABC song (over and over) while they waited. They helped put their wet suits into a plastic bag, then marched out to the car with proclamations that it was time to go find Grandma (which was perfectly true).

Who are these children, and where have they put mine?

Heaven in a box

My mom sent me a special present for Easter: Shari's Berries.

If you can have fruit and chocolate, get some. Follow the instructions on the box. Trust me.

Funny Bunnies

Happy Easter!!!

The Tough Questions

Do you have certain topical conversations you know are someday coming... ones that you think hard about what you will say when it comes time to discuss them. Yes, you know the ones. And you hardly ever say any of the things you think are necessary, or planned to say.

You may remember that in September, my mother lost her cat. The boys were fond of the cat, despite her rather grumpy disposition. Today, Joey bounced into the room where mom and I were discussing Easter baskets, and asked, "Where is the cat?"

I recovered fairly quickly- we are getting used to Joey asking questions- and this one even had a referent. Mom wasn't so quick. "What cat?" she asked- remember, the cat has been gone some months, and the children are often at her house, and this is the first time he has asked since we explained that the cat was gone.

"The orange cat," he replied as if he had been answering questions all his life. Amazing. But... what to say?

"Remember when the kitty was sick, and we took her to the doctor?" I tried to explain gently. "Remember, the doctor couldn't help her?" He looked right at me for a moment, then away, his fingers playing with something else. Most folks might take this as disinterest, or that the conversation was over, or that he had moved on- but he hadn't. He's Joey. He's thinking. What to say? What to say? As Maddy would say, I dithered.

"She died, honey," I finished simply, with no other words to provide; there was nothing more to be said.I gave him a little hug. "Do you miss the kitty?" I asked. "Yes," he replied, trying to escape me. "We do, too," I assured him with another little squeeze. "We;re sad she's gone." Then Joey was gone, too, out the door and down the hall.

That was not how that was supposed to go.

Spring Party

And from the Andy front:

Andy's class had their spring party on Wednesday. His teacher is very very pleased with him- Andy loves school, and is adapting well. He's ahead taller than everyone else, even though he's one of the youngest in there. He sits to eat his snack and everything. It was fun to watch him go with the flow, follow instructions, and look at books with his friends. It's a little strange, too, since Joey didn't do these things at this age; he didn't talk with other children, tell me or show me things, insist on things. On the other hand, its also fun to see how they are/were the same- still wanting to hug on Mom because she came to school, still wanting to be the one who holds the book and trn the pages when the teacher is reading. She also mentioned another similarity- Andy is considerate of his classmates' feelings. He does his best to help them, share with them, and does his share in cleaning up.

The class is a little more cliquish than I was expecting of 3-year-olds; the boys tend to leave Andy alone and bunch together without him. He's getting along fine with the girls, though.

I'm going to be in trouble when he becomes a teenager.

Economic Options

Just when you think you've got your feet under you, the economy takes a tank.

There are some economic realities when you have a kid in therapies. One, if you own a house, no matter the mortgage, you are at the mercy of your medical insurance. If you are lucky like us, your medical insurance will pitch in for occupational therapy, and (less often) speech therapy. But educational tutoring and "therapy"? You are on your own- or stuck with what the school gives you.

Which means when the economy goes down, folks that are not being helped already by social services, the schools, and community services due to low income have to choose between therapy for the child and paying the mortgage/rent. Therapy or food? And what about the second mortgages we already had to take out to pay for therapies? What happens when home values crash, and those equity lines and second mortgages are "called in"?

Which brings us to the question we have on our minds here: continue ABA, or not?

Joey gets two hours of ABA per week. For folks who have heard kids need 40 hours per week, we're a little farther along in the program. We're not working on discrete trials for responses; we're working on supporting the school program and generalizing skills. We've moved beyond having some college kid sitting at a table with flashcards and M&Ms. Besides, at $65 an hour, who can afford it? Private pay, we get a 30% discount. That's $78 a week, or $314-$390 per month.

Imagine if we could put that money towards the mortgage, instead of taking it from the mortgage. What is more important for Joey, generalization therapy or a roof over his head?

Wordless Wednesday: Hard Work

Homework Project

Joey has a homework project we are working on- a poster about himself. So I printed out some good pictures of him in various places and with various people, places he likes to go and things he likes to do, his toys and his brother and all that kind of stuff, all our "greatest hits". Then we went through them and I told him to pick out his "favorites" for his project, in which he would talk about himself with his friends. (He's going to have to get up in front of the class and present this!) It was really interesting what photos he picked out, and what he had to say about them. I didn't limit him at all- he kept picking, we kept talking and writing. I had him write sentences about the pictures on his usual paper, and we'll cut the whole mess out and glue it to the posterboard in the morning.

So what did he pick?

We were required to have him include "I was born April 10" and "I live in Fredericksburg." To accompany these two very boring sentences, he selected a picture of his Grandma holding him in the hospital. Granted, I gave him a limited selection to go with these, but they were an array of very early pictures of him. Did he pick the one of mom holding him? No. Grandma. It's a lovely picture, though.

Then from the throng he selected a picture at the beach. I love the pic, though I would have picked the one with him looking out over the ocean. The one he picked is from the fall. Probably remember it better. Anyway, he wrote that he liked to go to the beach "because I like the water and the sand." All by himself.

He picked himself playing the snow, riding his bike, and playing in the shark mouth at DinosaurLand. He also wanted the pic from Halloween. The sentence I was trying for was "I live with my mom, my dad, and my brother, Andy." What I got was "I live mom, my brother Andy, and Joey Little Bear, and T-Rex." Poor JoeyAndyDad. But this was the photo he wanted- and notice Dad is there. I think he got a little excited and forgot words in the sentence. I thought I'd toss in a picture of me when we glued things together tomorrow.


All weekend he's been saying he doesn't like cats, and been shying away from our cats. i know he has a love-fear relationship with dogs, but he's usually OK with our cats. After all, they've been here longer than he has. But I was surprised when he pulled out a picture of the cats (especially since I didn't mean for it to be in the stack of pictures. Surprise!) His sentence? "I have 2 cats at home. They are Luna and Ellora." I had to remind him of the names, but he could pick them out in the picture. Later, when Ellora came in to remind me she needed dinner, he triumphantly chimed, "Hello, Ellora!" I think she was confused, since he's been stand-off-ish, and suddenly he wanted to touch her. She's not into being touched.


And speaking of Grandma, he wanted her to have a sentence all her own. With no help at all (and not even facing me... he starting writing with his back to me): "My Grandma is Grandmother Bear. I love her." A voluntary, spontaneous, and appropriate pronoun. Wow.

Um, Hi.

As an avid reader of this blog, I am very honored to be allowed to write stuff here.

The Mrs. had been saying how I should start a blog and I mentioned that I thought Blogspot allowed for multiple bloggers, and here we are. A put up or shut up type situation.

No more backseat blogging for me, such as the suggestion that she post the 'Dinosaur Center' comment from Andy.

Joey was in one of his totally locked-in and focused moods today, which means that he was on his Leappad doohickey all day. Now, we have learned that when he appears to be off in lala-land, he actually is only devoting 80% of his attention to one thing. There's still 20% left for other things, which occasionally includes hearing, which is always nice.

He was so focused on learning cursive writing that it appeared to everyone at dinner that he was off in his own little world. Which is basically the perception of autistic people- that they are oblivious to their surroundings. Not interested in other people. Humorless automatons.

Well, five minutes with Joey will destroy that perception. In this case, Andy was tired and telling everyone "no" and to leave him alone, when Joey piped up, "Leaf me alawwwnn", without even looking up from his toy, and began to giggle. (Poor kid, he comes by this smart-aleck behavior honestly...)

So, anyway. Hi. Thanks JM for letting me graffiti your blog from time to time. Don't worry, folks, I won't hog the mic.

Please welcome...

I have added JoeyAndyDad, my adorable and wonderful husband, as an author to our blog. Be looking for new posts by JoeyAndyDad soon! And be sure to say "hi"!

Random moments II

In a room full of school personnel, discussing Joey's strengths and weaknesses, it is much like a sea of fog with oases of insights into what Joey can and cannot do. His expressive language deficits are severe, yet he seems to speak because he scripts so well. This is not getting through to them, you can see it in the blank eyes and confused frowns. "Have you ever read A Wrinkle In Time?" I offer. "He's like Mrs. Who." Faces light up. Understanding is gained. We are all on the same page. How often does that happen?

I race over to the door of Andy's classroom- it is already open. I am late. Not much, but enough. He is left waiting. His teacher spots me, calls into the room. Out tumbles a small yellow thing, who pounces into my arms. The teacher gives me a double thumbs-up. Good day. No time-outs. The little yellow-clad child chatters at me, something about green, birds, and dinosaurs. The dinosaurs part may just be his inclination to add the word "dinosaurs" to the ends of sentences (kind of like King George in Blackadder adding the word "penguin.") He could very well have said "The trees are green and full of birds dinosaurs." In fact, he is saying something like that, as there is a shrub on the way to the car that is full of birds and newly popped buds of leaves, and he is drawn to it like pins to a magnet. If it's alive, Andy is all over it. He dances around the shrub for a minute or two before I get him to the car. He starts to yell, "No Grandma! Don't want Grandma!" until he notices that her usual seat is unoccupied. He stops. He stares. He turns to me. "Where is Grandma?" he demands sternly. "She's not here today, honey," I explain patiently. "We're going over to the office to see if she took her trip to Baltimore." He begins to melt down. No! No Grandma! Where is Grandma? (Grandma, never forget, you are loved...)

"Hard day." These are two words that strike fear and concern into my heart, especially when they are at the start of the conversation with Joey's classroom aide. I get to talk to her when I pick him up for therapy. Joey is not usually violent, but today he came for a classmate like a crazed thing as gym was ending. They had been sharing a ball, bouncing it between them in some kind of game. When it came time to put it away, the other child was putting it away when Joey came for him, and hit him. He also had been sassing the aide, also unusual. There had been an assembly, could that have set him off? I take him to the car, tell Grandma the news. There is nothing for it- we have to ask, even during after-school mood. "How was school today?" Grandma asks cheerfully, and we make ground right away (he's just been listening to Mrs. Shaw talk about his day, after all). "D. keeps taking the ball!" We want to cheer, he answered with relevant information, but we want more information. Grandma comes up with a usually calming question, as this response has upset him, "What color was the ball?" "Blue." Ah, the color of the week. All explained.

The boys bounce in, still in pajamas, having granted us the luxury of a lie-in to 8 am. I have spent another night in the recliner to accommodate our regular nightly boy visit. They happily pile on, a great heap of boys. Joey snuggles into my space, kicking me aside again. "Momma! Move!" he demands, "Not enough room! Get in the chair!" Ah, cast aside like an old shoe.

We decide to go researching some home repair materials, including a new bike shed for the bikes. Off to Lowe's! We pull around the corner in sight of the store, and Joey triumphantly reads, "Garden Center!" "Good reading!" we praise him and clap. Then Andy announces, just as triumphantly, "Dinosaur Center!" Laughing that hard while driving is very dangerous.

The pizza place is familiar, but crowded, so Joey takes in the toy du jour, a Leapfrog Phonics writing desk. Several other customers give us the hard looks of the unappreciative as the toy beeps and talks, announcing the letter and playing its little tune as it demonstrates how to write the letter. "G!" Joey announces, "My last name!" All well and good. I look over at what my kindergartener has written to see a perfectly done cursive "G". Ah yes, the toy has a cursive setting. I better send a warning email to his teachers when I get home.

Guess what?

Joey is still autistic!

Yay!

Meeting adjourned.

Triennial

Barring snow...

It's tomorrow at 9:30. Should be a piece of cake. Going in prepared for an ambush. Wish I had a new letter from Kluge to take with me, but we'll muddle through.

Wordless Wednesday: Field Day

A Field Day

Yesterday was MidWinter Field Day at school- a field trip to the Field House to play field games inside on fake grass- complete with fake dirt. Yes, fake dirt. Apparently it is good for cushioning. The kids get just as dirty, by the way the "fake dirt" rubs into little hands and smudges across little faces and clothes. But they don't get wet or cold, so there's a plus.

The whole kindergarden went. I got to go as a chaperone. I had to meet them there, because there was no room on the bus (I noticed I was the only parent waiting for the buses in the parking lot. I was also the only special ed parent. Go figure.) We had five adults for six kids. Other classrooms had four to five adults for twenty to thirty, except the inclusion room- they only had 18 kids.

Our kids had a great time. We modified the games a little, so the instructions were easier to follow and expectations more in line with success. For example, we had a relay race that required our kids to jump, gallop, and skip. We all looked at one another in dismay- none of our kids can skip. So we kept the jumping, had them try the galloping, and then had them run. Also, our group was eerily quiet. The other groups were running around, screaming, squealing, laughing, yelling to each other. Quite a din. But ours? Well, we had laughing and some squealing, one kid with several (expected) meltdowns, but really, quiet. Most of them don;t speak well.

In some ways, the day was startling. Seeing Joey next to his non-disabled peers always highlights his disabilities. I just don't think of Joey as disabled most of the time. He's Joey, he has special needs, I have to pay attention to the supports he needs- but I just don't think about him as disabled. He's Joey. Next to the general uproar, it is always a bit of a shock to see what other kids can do, and Joey clearly cannot. He's so close... so close... yet so far, so separated. It was also a little disturbing to see kids that clearly needed to be in special ed who were not. Like Joey, you could see the isolation. Left in the swarm, they were left out, ridiculed, pestered, nagged. Adults were too taken up with supervising so many kids that there was no possibility of supporting those kids properly. One kid toe-walked and flapped all the way from the bus into the building, and every time I saw him, he was sitting against a wall, instead of participating. That was sad.

But in some ways, it was great. Joey does so much more than he used to. He can follow instructions, he can catch a bean bag, he can run and jump. He even did some crab walking, though he got frustrated with it and finally gave up and just crawled. He did the limbo with his friends. They did a whole game of pretending- pretend to paint pictures, pretend to catch balloons, pretend to ice skate- and he could do these things. And he was so happy, playing among friends. He was happy his mom was there. He was happy to eat a peanut butter sandwich. He was happy to play games. Everybody wanted to be with him, sit next to him, play with him. He was having a fabulous time. He enjoys life.

He was, of course, a mess the rest of the day. That's OK. I just had to hug him more, and smooch on him more, after a morning of lots of extra hugs and kisses.

Life is good.

Rooster's meme

ghkole at Rooster Calls has put up what she may not know is a meme: questions for us to answer about ourselves and blogging. But I'm game, as usual, so here it is:

- If you blog, do you tell people in your family or at your job about your blog?

No. My husband knows about my blog, and people find it, but I don't run around saying, "Look at my blog!" I have directed a couple folks to it directly, but not a whole lot. I have a separate more photo-laden site for family and friends to follow, that is a little more of a polished and shiny happy look at our lives. This blog is a bit more down-in-the-trenches.

- If so, how does that impact your writing?

I'm not sure. I know it effects the focus here, But mostly I direct people because of the focus, instead of focusing because of the people I direct.

- Do you keep hard copies of your blogs?

I keep a back-up copy on my computer. Which reminds me, i need to make a new one. I don't keep it entry-by-entry because I am an idiot.

- Do you ever not post comments you get?

No, but I have deleted a few that were ads or inappropriate. I do not allow anonymous posting, so that cuts down on the trolls.

- How do you balance writing versus reading?

Balance?

- Do you think of it as a chore or a diversion?

It is a way of life.

- Do you use RSS to keep track of blogs, or what?

No. I don't actually read that many blogs. If I want something new, I check out where my usual crowd is sending their awards, and often see if there is anything that looks interesting on the Autism Hub. Also, I like to check out folks who comment.

- Do you worry about what you write, or what readers will think?

Sometimes. I know that my students can "Google" me and this blog pops right up, so I try to check the language and I don't often wander off my topic. But I don't do anything crazy and interesting enough to threaten my jobs or anything. Otherwise, well, this is what I'm thinking right now, There you go.

Anybody else want to help out ghkole?

Saturday Night Retropective: The Way It Was

One small voice

And here I take my own small stand in the Poling "debate."

In the Poling case, it was determined that vaccines exacerbated a mitochondrial condition in one child. That catalyst resulted in problems for that child that looked like autism. Is the child autistic? I'm wondering if that is more of a political question than a medical one. So here my politics: yes, the child should be considered autistic. I'm not convinced that what we term "autism" is any one condition- it appears to be a group of behaviors, sensory problems, and communication issues that we group under the umbrella of "autism" just as all the religious traditions of India are umbrella-ed under "Hinduism."

Does this mean vaccines cause autism? Well, no. It means that a child with a mitochondrial condition may have been negatively impacted by vaccines... which has not actually been proven, by the way. What we have is circumstantial appearance, which is enough to get money for her treatment from the government. That is what this vaccine fund was set up for, and so yes, I think they are entitled to the money, and good luck to them. May they come through this with acceptance of their daughter- a beautiful girl- just as she is, and get her the support she needs.

This decision changes no facts about my own child, though I may do some research on mitochondrial disorders, to make sure he doesn't have one. If I found he had something like that, and there were other (legitimate) treatments, that would be important. I have already emailed Joey's doctors about it. I'm not the kind of mom that dismisses things out of hand- I check it out. After all, I suspect this mitochondrial thing would have "autism-like symptoms" even without the dreaded vaccines, right? Because it just "aggravated" the condition? So I'll let you all know what the doctors say. Gotta love email.

So there it is. Good luck to the Polings. Sorry this didn't prove anything. Sorry this whipped up the anti-vaccine crowd as if it had proven something. Ultimately, I suspect that this will only lead to more folks not vaccinating, increasingly the chances of my own kids getting these dangerous diseases. This should have been a quiet case, settled and moved on, nothing more to see here.

>>UPDATE: The email our developmental pediatrician sent back: "No." So there it is.<<

In the Beginning

It is a little-known trivia of my life that I one time re-wrote the Book of Genesis as a way to pass the time and waste lots of study hours in college. However, this version is much, much better.. It's much funnier if you regularly visit I Can Has Cheezburger, so if you don't, do that first.

NIghtlight

Hmmm. We installed a nightlight in Andy's room last night. Funny, we had no screaming, no visits from that child, and no problems getting him to go to sleep in the first place. This time last year, even a sliver of light in that room resulted in all-night problems. How children change as they grow up... we're glad he had a good night. Here's hoping for a trend.

If there was ever doubt

Well, I'm not voting for McCain. No, politicians, like the rest of us, can't know everything about everything. But they have advisors. And if you can't pick decent advisors, what kind of president are you going to be?

And for folks who don't think people believe sham science, like that presented in popular media outlets and tv shows... well, presidential candidates do...

Wordless Wednesday: Dinosaurs Again!

Proud to be me

If you haven't read the latest article from Wired, go have a peek. It has its ups and downs, but its always good to know where the ups and downs are.

One comment (of several) that struck me was attributed to Fred Volkmar: "[he] likens [the idea of autism as a difference instead of a disorder] to telling a physically disabled person: 'You don't need a wheelchair. Walk!' "

This struck me because it has nothing to do with the idea of difference at all. None. Zero. Zip.

Nothing in the neurodiversity movement or the "difference model" says autistic people may not need supports. What seems to be said is that, just as a person who may need a wheelchair to be mobile is still human, so are autistic people. An inability to communicate does not mean a person is stupid. I know lots of people with Ph.D.s who are stupid, who speak for a living. It's not about telling the person in the wheelchair to walk. It's about making sure they have a fabulous wheelchair and ramps and that the doors are wide enough to get the chair through. It is understanding that a person in a wheelchair is mobile, they go out to lunch, go to the library, may need to go to the hospital.

It's about not expecting autistic kids to take SOL tests without appropriate supports. We don't ask the blind child to take a test without providing the test either orally, or in braille- and if in braille, we make sure they have been taught braille. We help them to be independent. Why should I ask any less for my child? Either child?

In a related blog entry in the NY Times, one of the commenters thought it was a "stretch" to have an autistic pride movement because "Disabilities are obstacles to anyone who wishes both to be a part of society and to function as an autonomous, independent adult, and the cognitive and communicative dysfunction that typifies autism is severe."

First, I take issue with the idea that there is severe cognitive dysfunction. This goes with the idea at 70% of autistics are mentally retarded... which we are learning is just not the case. I suspect mental retardation is no more prevalent in autistic populations than in the general population. However, this may be a problem to determine, as anyone with a communicative dysfunction or disorder is often labeled "mentally retarded" in our society. Heck, my Andy's articulation problems would at one time have slapped him with a label of being cognitively deficient or impaired! A person with a stutter may need speech therapy, but does that mean they are intellectually challenged?

Moving on to the point; what's wrong with it being a "pride" movement?

So much of the literature on autism is negative. That is part of the point of the Wired article- all this negativity ignores what autistic people can do, in favor of what they can't do. Funding is not for understanding, it is only for fixing. I still have no idea how you can even try to fix something if you can't see if or how it is broken, so I would think there would be more money trying to figure out how brains work, and how the autistic brain is different. But there isn't. Very strange.

I have wandered off the point again: pride. I certainly hope when Joey grows older and starts to explore himself and his identity, he can find pride in being Joey. Pride movements are not about fitting into society. They are about identity politics. It is about being able to seize control of labels and being who you are, and creating your identity based on who you are. There is nothing inherently evil in being autistic, it is an inherent part of who Joey is. Why not be proud of being who he is?

As Rachel says at Signing Time:
It doesn't matter what you look like
The things you can and cannot do
Just be a boy or be a girl
Feel proud that you are you!

What's wrong with that?

Joey has just as much right to be proud to be Joey as you have the right to be proud of being you. May he seize the labels and take control of his own identity with the same strength of character and joy of living as anyone else. People who love Starbucks. People who are Americans. We have a Welsh Society here, those people couldn't help being born Welsh. We have a fabulous deaf community here, and those folks didn't choose to be deaf. But there is power in seizing who you are, just as you seize the things you do control- just like the Mommy Club, the Bowling League, or the Western Line Dancing Society. We create pride movements and identities every day. Don't deny that to someone just because they don't share your identity.

Food and the Preschooler

So you may remember my preschooler decided to stop eating foods. We didn't quite get to the neophobe stage, but it was starting to drive me frantic. We seem to have re-reached the normal "picky preschooler" level, so I'm feeling better.

This week, the menu is bacon, yogurt, poptarts, bacon, american cheese, milk, soda, bacon, calamari ("tidbits"... hey, if he's going to eat something, why not?), parmesan cheese, ketchup, bacon, bacon, chicken nuggets, french fries (started back yesterday), sugar cookies, fruit snacks (which we consider candy), bacon, lettuce, grapes, strawberries, bacon, taco meat, corn chips, potato chips, and bacon.

Schwan's sells precooked bacon that is expensive as hell, but very, very yummy, right from the fridge. That's right. Cold. Its good warmed, too, but the boys prefer it cold. Coronary in a bag. Woo-hoo!

This week, we're going to try carrots, some more veggies (peas would be nice to have back on the list, they're easy to grow), and I may try chicken again. We'll see.

Dinosaur Land Part 2

Two boys had a wonderfully good time!

Saturday Adventure, Part One

We went to Dinosaur Land today. Andy is in love. Joey liked the big shark. Overall, a hit. Unfortunately, its a bit of a drive for us to get there. I'm going to look into what else is around Winchester so we can make more of an adventure of it.

Meeting Interrupted

So off I slogged to school this morning, to talk with Joey's teachers. Here in the Old Dominion, special ed kids are sent home report cards like everyone else- and based on the "norm" of a regular classroom performance. Kind of. So although Joey is reading on a first grade level, writing sentences, and doing simple subtraction, he is not assigned a grade of "successful", but instead a line of "progressing with effort." The other choice is "needs improvement." Why is he not considered "successful"? Because he cannot answer questions consistently.

Remember that my kid has a serious expressive communication disability.

This is kind of like giving a blind child a poor report in reading because the child cannot see the page, even though they can read braille fluently. Give the kid in the wheelchair a poor report for phys ed, because the child cannot walk, even though they have a wickedly good throwing arm. No, I have a better one. Give the deaf child a poor report in language arts because, although they can both sign and speak, they cannot maintain consistent pitch or always pronounce a sound clearly and at consistent volume.

In other words, this piece of paper is, for us, trash. Wasted pulp. Someone call in the police, we have murdered a tree with malice aforethought. All it tells me is that Joey cannot perform at the same consistent level of a non-disabled peer in areas where he must use spoken language to prove his understanding of the material. Nuh.

But that's not why I'm blogging about this.

In the middle of this discussion, and the discussion of how to explain to Joey's family that this piece of paper tells us exactly nothing, another school employee wanders in, and notes that if Joey does too well on this piece of paper, they will start talking about taking him out of the self-contained setting.

Now, that is likely very true. And if he was getting really great grades, maybe it is something that ought to be considered. We are certainly thinking about giving him more time in an inclusion setting. However, it was not the bare statement that's really the problem- its the way this person says these kinds of things. It's like she's saying we shouldn't be striving to help and support Joey, because then "they" are going to yank service. The only person who has tried to yank service based on a piece of paper has been... well, her. There is a tone of "if your kid does too well, then he's going to get tossed." Excuse me? Because support is working, you're going to try to yank it?

If that's a warning, thank you. If not, shut your mouth and be civil for once.

Update: Allergist

First, thank you Joe for your reassuring message about the lidocaine. I followed the doctor's recommendations for use to the letter, complete with saran wrap.

Unfortunately, it didn't work. I know the cream was good, because my fingertips were slightly numbed just getting it on him. But then they came at him with eleven hypodermic needles, and he let us know he was unhappy with each and every one. remember, Joey usually has a very high pain tolerance. Yikers.

He bled, but nothing swelled, so no allergies. The best we can figure, it is some kind of contact allergy, probably something found in the cleaner they use on the school carpets, or something in the carpet itself. We may never know, but the doctor was still unhappy with his rash- the one he has all the time, that doesn't itch, so she wants us back in three months.

He was such a little trooper- he didn't like those needles, but didn't move or scream or anything, just squinched his face and said, "Ouch! Hurts!" So I took him to the toy store and got him a new truck. He was so upset that his teacher let him hold on to the new truck when I took him to school. His ABA session was a disaster. He's now in bed after plenty of hugs and kisses, with his new truck. I thought the routine of school might be comforting for him. Now I wish I had just taken him home.