Busy busy busy

OK, some cute gliimpses of life in my house:

Over the weekend, the boys came piling into our room at 6am (now their usual time), so Allan went to the bathroom while I got up and dressed the boys. They got interested in some toys in Joey's room, so I went to get dressed myself. I heard the water come on, wished I could take a shower, too, and continued dressing. Out Allan came. It was far too quick for him to have taken a shower, and the water was still going...

We found the boys in the bathtub. Joey was stark nekkid (he took off his own shirt! yay!). Andy was fully clothed. They were enjoying their bath very much, thank you.




Joey has a new video he likes, Animusic. The best description of the product is "surreal", and Joey loves it. He was snuggling with Grandma watching his music, when one of our therapists arrived. Grandma leaned over and asked, "are you ready to go play with Miss Kate?" Joey sighed and said, "No, I'm tired."

We gave him another five minutes, when he stood up and said "OK, ready," and headed downstairs to the therapy room!





Andy went to school today. We joined Joey's class to try some "reverse mainstreaming" and for me to observe Joey. It was a disaster. He would not sit. He insisted on being everywhere except where the group was, and doing everything excpt what the group was doing. We left after an hour, with me thoroughly shaken by my clear lack of parenting an discipline skills. When we got to the car, he says very quietly, "You ok, Momma?"




I was putting the boys down, and I managed to get them both bathed, dressed, calmed, and into their beds- Allan was out. We have to sit with Joey, so I finished singing and sat in the chair. Andy promptly began to fuss. Joey called out, "Andy, whassa matter?" I finally got up and determined there was a need for a goodnight drink, supplied it, got Andy calmed, and returned to my chair. Joey piped up: "All better now. Good night, Momma. I love you." What else can you say to that, than, "I love, you, too"? To which he replied, without missing a beat, "I love you 44."

Sleepyheads

Joey hasn't been feeling too good. He's gone back to napping. He wants a storytime in bed, but he doesn't want to sleep there. He wants to sleep on the couch, with Little Bear playing. Sometimes Andy sleeps too, but not today, he was up right on time. I wanted to have them carve pumpkins, but I don't know if that will work now. Maybe I'll have them each do one tomorrow, when I can deal with them one at a time anyway.

I haven't had any time to be creative for Halloween. They're going to be a Panda and Fireman, just like last year, because when am I going to make costumes? You'd think being home all the time, I'd have all the time in the world to do stuff, but...

Four Weeks of Silence

Its been a long month.

In the good news front, Joey is enjoying Occupational Therapy. Jeanine is a fabulous therapist, and she really likes to sit down and thell me what they did and why they did it.

On the bad news front, we have a lot more spinning, a lot more door slamming, and a lot more grumpiness. Is he sick? Is he stressed? Do we have too many therapies now? Is school going OK? there is no way to know.

On the good news front, we are having more conversations. He can talk about school, what he did, what he ate for lunch, and what he likes and dislikes. He can talk about Little Bear episodes, and pretend to fly, and dance, and sing.

On the bad news front, we are having more tantrums over "mistakes" and spills, and he's been saying "oh, DAMN!" and "Godammit!" when he's upset.

On the good news front, he went to the pumpkin patch and seemed to enjoy himself and the other kids in his class. He;s very bossy!

On the bad news front, he's very bossy with Andy, who doesn't want to be bossed.

All in all, its nice to have some "normal" problems, but I could do without the increased behavioral issues.

I could also do with some time off. I took Allan out for his birthday. Woo-hoo, we had two hours all to ourselves. We had no idea what to say to each other. We had nothing but the boys to talk about. There was too much food served- we've gotten used to just eating whatever the boys are eating (why haven't I lost any weight???) We each had a drink. Mine cost eight bucks. Wowzers. Now we know why we don't do that anymore. And two hours later, we were back to screaming boys, trying to get them to go to sleep after being up and extra hour and half.

Lovely.

New Therapies

We started teh new OT. I really like the therapist. She uses the time reserved for consultation to actually do the consultation, and talk to me about what Joey is doing and why he is doing it. She also seems to click OK with Joey, but we'll give that a couple more weeks to be sure.

Yesterday he made me a beautiful little bracelet with a pipecleaner and ponybeads. It apparently took him half the time she was planning, which is lovely. :)

I must admit being very angry with the school therapist, though. I understand if she can only handle ADL goals (adaptive life skills), but both these therapists and the guy at Kluge say Joey desperately needs OT for sensory integration problems. DEPERATELY. Yet nothing was said! Is she grossly incompetant (she couldn't see the need for sensory therapy), or grossly negligent (she just was going to let him rot because she doesn't have the equipment/time/inclination/doesn't want school to have to pay for it)? I thought the point of having these therpaists and experts on the IEP committee was to have good-faith opinions of what Joey needs, but apparently they are just one more roadblock- one more person have to fight for appropriate and adequate service.

Things That Make Life Good (Part Two)

Listening to Joey singing "Wheels on the Bus." Including the verses we made up together.
Andy playing pirate.
Joey with a big chocolate chip cookie in his mouth, when he stirred to the dough to make it.
Boys giggling and running along the sidewalk, waiting for the school bus.
Andy wearing his construction worker hat, stethoscope, and carrying a watering can- then insisting that YOU wear this stuff.
It's the Great Pumpkin, Charlie Brown.
Joey talking on the telephone.
Andy talking on the telephone.
Wondering what everyone wants to be for Halloween.
New stories for boys.
Waking up with two boys bouncing on your tummy.
Goodnight kisses.
Good morning kisses.
"Gimme HUG!"
A boy crawling over you to snuggle in bed at 6 am.
Andy and his Blankie.

And now, the moment we've all been waiting for...

My boys: Joey and Andy. Not that anyone is reading this thing, but there it is, if you happen to stumble in.

We're doing OK today. Andy tossed cookies in the car this morning, but he seems to be feeling much better now. Joey has been a bit quiet, too. We're hoping to go to the fair this weekend, but if they're sick...

We had to wash Blankie today (see previous paragraph), which of course is the End of the World As We Know It. A sub for Blankie had to be found, and none would do. Then I found Allan's old blanket, which his mom sent a while ago- before Andy was born. Anyway, I turned and offered it with, "How about Daddy's blankie?" He snatched it from my grasp, hugged it, and said "Yes." He napped with Daddy's Blankie, thank goodness. He was very happy to have his own Blankie back for bedtime, though.

OT starts next week. We're going to have him checked out by Kluge on Monday, but we figure the OT people can't hurt him.

Another Day, Another Evaluation

We've just been busy as beavers in a willow wood here. School starting is always interesting, but we've also had a new speech therapist, the return of Joey's ABA therapists. We also had the OT evaluation.

Now, i wasn't that nervous about the OT eval. Everyone at school thinks he's doing so well, and he looks to me like he's doing so well, I just never thought about it. I was way more nervous about the speech eval. However, we've always hit speech hard, because we've always assumed that was his main weakness.

I also often drift into a "place" where Joey is looking good, and I'm comfortable with the help he is getting, and he seems to be improving, so I kind of forget he is disabled. You kind of think of him as 3 instead of 4 in the first place, and don't worry so much. The tantrums become just part of life. The screaming is just what Joey does. He's just a little boy.

We got the "results" of the eval yesterday. It was a real shock to see him being evaluated as 1% and 2% in things like gross motor and fine motor skills. (50% is normal). Is he really this bad off? Why hasn't anyone at school said anything? Why isn't he getting more therapy? What the HELL?

I've decided I'm going to call Kluge and have him evaluated again there- a second opinion. Ultimately, these people we just took him to is a business, and needs to make money. Kluge would be more impartial. But if this is the real picture, I think "conniption fit" is going to be a gentle word to use for what I'm going to have at school.

Back to School

Glorious day! This morning, Joey was SO excited to get on the bus and get to school! He was so ready to get back to his life and friends and teachers. Its a momentous occasion: the first day of school.

The real surprise was when he came home. I asked, as usual, "Did you have fun at school today?" and he answered... yes, he ANSWERED... "yes!" I asked him about people he saw and things he might have done. My child can communicate to me about what he did during the day! Its a miracle!

Some days I watch hi mwith other kids and wonder if he will ever be able to blend with his peers, to communicate and connect with them. Then there are days like today, when I think, hey, he's a hard-working, sweet little guy! People like him! He's going to make it!

Baking cookies

When I was little, mom sometimes made gingerbread for breakfast. i love gingerbread. So I got a box of gingerbread mix to pass on the delight. That's when I noticed that the side of the box had a recipe for cookies using the same mix. My kids eat cookies far better than cake, so bingo! Ginger cookie breakfast (with banana and milk- I'm not a complete oaf as a parent) was born!

This morning, Joey made the cookies. Well, he helped. He poured the warm water and teh extra flour into the bowl, and helped mix it up, then helped roll the dough into balls (not very successful at that yet), then squished them (all by himself!) to make snaps.

The trouble arose when we had to bake them. All hell broke loose. No-no-no, AAAAAAAAAAAAAAAAAAAAAAA, cookies now cookies cookies cookies....

Fifteen minutes and my sanity later, the cookies were being eaten. So again, i explained, "See? We have to bake the cookies. THey have to cook. Do you like them cooked? "
"Yes."
"Then we have to cook them. And it takes ten minutes to cook them, and then we have cookies. Okay? "
"Okay!"

At least teh cookies were good.

A Smack on the Chin

Joey has a new behavior stratgey for trying to get what he wants when Mom says he can't have it- he smack himself on the chin with the heel of his hand. Hard.

Up to this point, we have escaped with minimal self-injury, and I would still say we are escaping with minimal self-injury. Right now we have finger-biting when he gets frustrated, and now the attempt to smash his own jawbone when he's having a mini-tantrum. It could be worse. However, trying to stop these behaviors is not fun. Since he is doing these for frustration and anger, trying to stop the behavior makes it all worse. Not good.

Fortunately, school starts up next week, so we can get some help from his teachers. I'm sure his teacher is not going to stand for "no-no-no", then a smack on his chin, followed by a hard bite of his fingers. No, they don't go for that at school, and he knows it.

A Chat with a Friend

We were supposed to go to the pool on Friday, but everybody here was sick. :P Joey was really looking forward to it, too- we were going to see his friend, Charity. She's a darling little thing who is in Joey's classes at school- or has been. This year she will be in HeadStart. She was so upset, her mom let her call- and she and Joey talked on the phone together! It was amazing! He was so happy to have a call, and to have it be Charity! He did some echoing, but they seemed to be actually having a conversation. Incredible!

Tough Day

So we took the guys to the Aquarium in Baltimore. I love the aquarium- and its gotten so huge! I used to love to just wander through the exihibits about the beaches, or the coral reef, it was so beautiful and soothing. Of course, that was when it was six bucks to get in and we were often the only people we saw. Now its $24 to get in and the place is packed at 9 am.

Andy had a grand time. We started off with Joey being with Dad and Andy being with Mom. That lasted about ten minutes. Andy loved each and every exhibit- he could have spent hours staring at manta rays, or at a live crab, or at a clown fish in an anemone. Joey had a bit more of a problem.

Imagine you are someone who is used to light, bright places with very few people, and get nervous if you can't see Mom and Dad. Now, imagine you are shoved into a very small, dark room full of strange people and watery, bubbly noises. Sound scary? Place autism on top of that. You can imagine how my day went.

It could have been worse. He loved the escalators. At each level, he would freak out at the beginning, and end up a screaming heap on the floor; I would sit with him a few minutes, maybe get him to look at a fish. Then we'd have to move. Start the process over. Repeat at least twice, when we could finally reach the escalator. Boy instantly transforms into angel. Get off escalator, and enter a cramped, dark room. Repeat for four levels. Now we're at the top of the coral reef. I probably should have taken him into the Rain Forest, where it was lighter; but my brain calculated open spaces with lives things and wild noises, crammed with people, next to a fairly quiet, mostly abandoned coral reef exihibit, and I made my choice. At each level, we had renewed meltdown. Repeat four times.

Fortunately, he liked sitting in the cafe, and he liked the frogs a little better- but he was really tired by then, and in his "no-no-no" mode. We did better with teh dolphin show, but it was the worst, most boring dolphin show I had ever seen. We finally got out in one peice.

Andy was sad to go. He had melted down when we first stepped into teh street from the parking garage. He had never been in a city like that before, and the tall buildings were just overwhelming. We let him sit for a minute with some assurances, and he got over it. Joey doesn't get over it.

Just when we think he's doing so so well, we have a day like this- a reminder that he may never be like other kids, running from tank to tank, poking fingers at fish and squealing with glee, then dragging Mom and Dad to the next tank. I don't even want to discuss the dirty looks I got. Outing like this remind me why other people with autistic kids don't go on outings like this. I still don't see how he's supposed to learn to deal with crowds if he's never in one.

A Conversation

So last night, I was talking with Grandma on the phone, and Joey wanted to talk to her ("Grandma!") so we handed him the phone- and he actually had a conversation with her! Then at dinner, he did it again! ("What are you doing" "Dinner." "What are you having for dinner?" "Green beans." ) How cool is THAT? Over the phone, even!

Testing

So Vonda came form the Matthew's Center. She asked the same questions everyone asks- what's the problem, what shape is he in, what does he like (for reinforcers) and dislike (in case of sensory issues), what behaviors do we see that are unusual.

I have a hard time with this questionaire. I'm fine with likes, and stressing the problem is communication, not intelligence or sensory issues; but trying to explain the exact problem with Joey is a little difficult, and dislikes is nearly impossible. I mean, I can name foods; but then, that;s his main sensory issue, and most of the dislikes I think are just normal dislikes, like not liking tomatoes. Lots of kids don't like tomatoes. Yes, he tracks. Not much to be done for that, especially since he can be very sneaky about it. OK, he's echolalic. At least he's putting the echoed words into an appropriate context much of the time. He's doing better, but he's clearly not talking at the level of a normal four-year-old. When kids ask him questions, he just stares at them blankly. Is that a social issue, or a communication issue?

Deneice (our speech therapist) is also testing him this week. They need the eval to get teh insurance to kick in. I'm really nervous about that, too- he's been testing well, even though in teh real world he's not up to par. Andy speaks more words, and more appropriately, than Joey. If he tests at 36 months or better, I could lose services! On the other hand, how great would it be if he were 36 months or better? If this therapy is working?

A New Provider

So tomorrow the Matthew's Center is coming to evaluate Joey. In most ways, this is a good thing- they provide in-home therapies for about $40/hour, plan goals for $60/hour, and do things like respite and classroom paraprofessionals. These would be real, trained people working with Joey, not just some college kids I trained myself.

On the other hand, it means I need to scrub my house, organize the toys, and make sure everything is presentable. I'm not in the mood for some stranger to come into the house and tell me what a pigsty it is, and remind me that Joey needs order. Who doesn't?

Day 6, no accidents.

Day 6 of "I want to wear underwear." Joey just decided this was it, he didn't want diapers anymore. He's progressed to telling us when he wants to go... so far, so good. Joy of joys! Now if I can only get the other one to go on the potty...

A moment's peace

Joey hasn't been taking naps for a few months now, but he has fallen asleep today. This is a good thing; he's been exhausted. All this potty training is so stressful, the heat has been unbearable, and we've been trying to redirect him from his latest stimming- putting objects to his face, then dropping them.

You'd think I'd be getting off my butt and getting something done with both boys asleep; but one is upstairs, one is downstairs, and I don't want to wake either of them. Although, which thing should be done first? Everything piles up so fast, its hard to decide what to get done, if in fact anythng can get done. I compromised by cleaning in the kitchen, and entering the blog entry. Now I'm going to get off my butt and clean a bathroom before the peace is done.

Too late.

CNN

CNN is doing another series on autism:
http://www.cnn.com/2006/HEALTH/07/28/autism.overview/index.html

A Trip to Tennessee

This is probably going to be just "part one"- it's late. But we went to Tennessee. We decided to drive- neither Allan nor I could imagine Joey in an airplane- and that was BEFORE he threw up while we were driving over the mountains. Nope. No planes for now.

However, car sickness is a normal problem for small kids. It was a trip that reminded us just how disabled Joey is. I hate trips like that. I far prefer the ones where I never even think about it, where its weeks later and I think "wow, he did really well that day" or when I am telling someone else what we did, all I remember is how much fun he had. Not that it was a bad trip; he enjoyed the dogs at Granny's and the slumber parties in the hotel rooms and all, but there were those little prickles of "this isn't right" and "normal kids don't do this."

The stopped at the Nashville zoo. Andy LOVED it. Its really a lovely zoo, I recommend it. Its shady and comfortable and they are doing a fabulous job. But Joey's main concern was riding in the rented stroller. He didn't want to look at the elephants or anything. I guess I could say he liked the meerkats, and the alligators, but anything that was any distance from the fence, forget it. Andy was straining over the fences to watch; Joey was wondering why the stroller wasn't moving, and how he could get it to move.

Then there was the dinner meltdown. Our second dinner at Granny's was late- significantly late, like 8 pm instead 6pm late. Any kid would have been grumpy. Andy was grumpy. But Joey just lost it completely. He was too hungry to eat. The dogs were all over him. Allan's sister was clearly annoyed with us. What my mother-in-law and father-in-law thought I have not the foggiest, I was afraid to even look, and I think they were trying to be tactfully silent. It was disaster.

While I'm at this point, I really wish I was better at describing Joey's meltdowns. When I tell these kinds of stories to my friends and relations, I often get told that most kids "meltdown" and would in a similar situation. I understand that concept, but clearly I am not communicating how Joey's meltdown is so different compared to what I see other kids do. When other kids meltdown, it is unpleasant, probably annoying to people who have never had children or are long done with them, and grates the parents' nerves. When my child melts down, the earth stops spinning and explodes. Partly this is because of my perspective- Joey is MY child, and having him freak out is very heart-wrenching for me. However, it really does seem to be far more violent than anything I have seen "normal" kids do anywhere, and its a different sort of unrelenting screaming, kicking, frustration to the core. When Andy melts down, no one is in immediate danger of losing one's mind or severe injury, he never purposely gets into my face and empties his lungs (and there is no doubt of the strength of Andy's lungs), the vibes of frustration are superficial and in the moment. When Joey melts down, his whole person seems to explode. Does that make any sense?

Meltdown

So we had a whiz-bang yesterday. Joey has found a new stimming behavior- he presses all the cars he can hold to his face, then lets them drop. We think it started with Cookie Monster, devouring cookies and letting the crumbs drop everywhere. It's turned into something of a problem.

Telling him to stop is also a problem. One of the sure signs that the behavior is not appropriate: try to stop it, and complete meltdown ensues.

All in all, we're pretty lucky with Joey. He doesn't tantrum much; in fact, he's usually an easy-going little guy. When he does melt down, it's complete pandemonium. He screams with teh frustration and aggravation. He tosses himself on furniture or the floor. He throws things in all directions. If you try to restrain him, he beats on you. The entire day is shot with your nerves. Ever had someone get less than an inch from your face and just unleash their lungs?

Sometimes I forget that Joey is autistic, or disabled. Perhaps I want to forget. Perhaps he's just such a sweet little thing, and I'm just so used to him being who he is, it just doesn;t even cross my mind. Then there are the meltdowns. It becomes so mind-bendingly obvious that its not right. I've seen normal kids have tantrums. They are nothing compared to Joey, and are over before Joey even gets going. Even Andy stomps his feet and cries when he can't have another potato chip or has to go to bed- nothing compared to a Joey Meltdown.

There has to be something we can do to help him, to give him some tools to be able to calm himself down; but I have no idea what to do for him. We hug him mightily when it is all over, but what else can be done? We can't let him drown in these repetative, unappropriate actions. He drifts away into them, and we can't afford drifting. Its not like a normal kid, who vegs to process and rest. Joey just disappears. We lose simple skills. He talks less. He does less. He just drifts away.