Saturday, May 19, 2007


I didn't have to work today- a rare Saturday treat that marks the beginning of summer, when fewer people take standardized tests, and thus there is less work to be had. So I packed up my boys, hijacking Grandma, and off we went to the Great Big City and the Museum of Really Old Stuff. Specifically, we were off to see the dinosaurs!

Andy is currently a dinosaur FREAK. Everything is dinosaurs. If you want to reinforce behavior, use dinosaurs. Want to reward him? Cajol him? Comfort him? Try a dinosaur. We got a coupon from the Toys-R-Us Birthday Club. What did he pick out? More dinosaurs.

Joey never really gets into anything in particular for any length of time. We've gone through a Cars phase, and he still likes to go to bed with the Mr. Guinea Pig I made for him. He likes a little Pooh Bear that he pretends is Little Bear, and of course there is Octopus. But no real interest has taken hold of him the way Andy loves dinosaurs. Joey's interests are more kinetic than topical.

Anyway, we headed off into the sunrise to go see Dinosaurs. We made some plans on the way up to deal with meltdowns, tracking, lost children, lost Grandma. We figured we'd need to eat in the cafeteria, and discussed the needs for a quiet corner table. I had packed extra pull-ups for Andy, and extra clothes for everybody. We were off on our road trip, prepared for a day with an autistic child in a crowded, new place! The Smithsonian on a Saturday! (Anybody cringing yet?)

I was exceedingly proud of both of my guys. We had no meltdowns. No... wait.. let me repeat that for you! We had no meltdowns. None. Zero. Zip.

We managed to get a parking spot practically in front of the museum on the street- a feat unheard of in the modern world. We were obviously meant to be there today. So we park, feed the meter, and head inside. We head straight for the dinosaurs- which requires a ride up an escalator, This is an excellent start, because Joey loves escalators. Up we go, and since we have no camera (I rarely have a camera if I don't have a third set of hands to carry one), Grandma runs ahead of us (literally- I was shocked. Bad knees and all, off she sprinted!) so she can see Andy's face as he comes around the corner and sees his very first, real, live, in-person Dinosaur. I wish I had been able to see that face straight-on, too; but the squeal of delight ("T-RECTH!") will have to do for a mom. Joey was happy about it, too. After all, its big, and in a room full of nice handrails to track. He managed to get through the droves of tourists by tracking, without us losing sight of him before reigning him in on occasion. He even looked at some of the dinosaurs. But Andy... here was a child in Heaven. Had I left him there to live his life in that room, he would have exploded with joy. T-Rex, triceratops, allosaurus, stegasaurus, pteradons, even hadrosaurs. Mommy had to be taken by the hand and shown each wonder, then Grandma found for the same tour.

We tried to have lunch in the Fossil Cafe, but there was no room, so we finally gave up and went to the big cafeteria. They were only taking cash, so I had to locate an ATM, but all was well. We found a fairly out-of-the-way table where I could contain children, and they ate like champs. Both had two chicken strips, some fruit, and fries, and Andy even had a bite of my chicken curry sandwich, and declared it delicious.

We then decided to go up to see the mammals. I was disappointed. The old exhibit were diaramas, so you got a sense of the animals in their habitat. Besides, my great-uncle Watson made those diaramas. Now, they have the animals stuck in cases, most very high over your head, with no context at all. They already have a zoo, so I didn't see the point. Joey wanted to track the handrails, and ran ahead, and into someone. Not good.

Fortunately, the Discovery Room is not as popular as it was when I was little, no tickets needed, we just walked right in. It's very nicely set up, at least for us. There were some risers up to some windows and books, and then shelves with the hands-on stuff in them. Mom and I sat at the shelves, and when the boys wanted to engage, they came over to see what we had; when they wanted a break, they went over to teh window away from everything. They got to hold seasheels and starfish, play a drum, looks at things through a microscope, and even touch a crocodile's head! Fabulous stuff.

While the remodeling is on, the back corner by the Discovery Room is more dimly lit, and has a bench, but no people, since there's nothing there to see right now. Afte the excitement, we sat for a few minutes. All the other rooms were brightly lit, which helped Joey immensely; now the oasis of quiet let everyone regroup before being packed back up and heading home. Mom decided to stop and buy t-shirts, so we chased pigeons for a few minutes, then made it back, with our new shirts on, to the car just as the meter ran out. Perfecto.

It's a bit of work to take these guys out like this, but man, what a success. Can't beat that.


When I was in intermediate (middle) school, I was terribly, terribly bored. In an attempt to revitalize my interest in school, I was given a project to landscape a small strip of land between the road and the bus pull-off in front of the school. iI was told the budget and sent off. I measured and made diagrams of the area ot be done. I interviewed landscapers until I found one that would work with me and within my budget. Instead of just planning to stick some trees in a line and stick in some annuals aroudn them, we planned the landscaping to be low-maintenance, able to withstand heavy traffic in case of fire drills and the like. We considered the view both from the school and the street, and came up with textures and line that worked from both directions. We wrote up the contract, and I took it all in to the principal.

Two weeks later, I got off teh bus to see a few trees stuck out in the space in a little line, with annual s stuck in around them. The annuals were promptly trampled three days later, when we had a fire drill. "Well, we decided to just go ahead and get something in," I was told when I asked about my project. Somehow, I never regained much interest in school.

I have yet to come out of an IEP meeting without being reminded of this experience.

Friday, May 18, 2007


So they put me off for three weeks so they could put together their own littl in-house program. I walked out just on principle. I told theym I had already signed JOey up for summer programming- programming that they had said was acceptable. Now, its their way or the highway.

The program doesn't sound too bad, with a special ed teacher, an aide, visits from the speech pathologist, and the ABA specialist we're already using coming in for consultation. They'd be working on social skills. But what about the sensory issues that I already have to fight tooth and nail to get addressed?

Now what do I do?

ESY IEP: Round 2

We have another meeting to straighten out the ESY this morning. I've already signed him up for OT and speech camps, so I am hoping this will take all of 15 minutes.

Wish me luck. I'll keep you all posted!

Thursday, May 17, 2007

Did I open a can of worms, or what?

What does a proper ABA program do?

Part of the goal of this blog is to share what I have learned about autism and services. One of the lines of investigation I have been drowned in is ABA.

First and foremost, I am not an ABA fanatic. I think it is very useful for very specific types of skills, and needed for certain kinds of children. Not all of those children are autistic. The goal of most ABA providers is to change behavior. The question becomes, which behavior, when, and why?

For us, the point of ABA is to teach Joey to learn, and to provide him with skills he will need to cope with living. ABA is very good for teaching Joey skills he can imitate, repeat, and incorporate. For example, he has learned to respond to questions using discrete trial training. He is currently learning to sit and focus while another person reads a story. He learned to use the potty this way. We reinforce positive accomplishments, and he gets the idea of what he is doing right, as opposed to what he is doing wrong.

Joey needs about five hours a week of this one-on-one engagement that is emphasizing learning and imitation to gain skills. He actually only gets about three hours a week, because as is mentioned elsewhere, it is very, very expensive to have ABA done by a real ABA specialist, as opposed to some college kid who has the same weekend workshop training that I do.

ABA done wrong is dangerous. We had a program in here a couple years ago. They insisted on a very set program of skills, most of which Joey had already acquired, so he was going to be very, very bored. Asking a kid who can count to 100 to count to 5 over and over again is not helpful. You are not teaching that child anything, nor are you reinforcing anything but basic obedience. Joey is not a trained seal. Such a program was not helpful; it was harmful, as it provided no rewards for learning- including learning itself.

Yes, Joey needs to learn that while in a classroom, he needs to be able to sit and focus on a task. However, there is no need to completely eliminate his “autistic” behaviors. This is something our Sunday school teachers are learning. I observed him in class last week, because they are saying he is still having a lot of trouble with group singing and storytime. What I discovered is he’s doing just fine. About half the class lost interest in this loosely structured activity set. However, instead of whispering and giggling to other children, finding toys, or crawling off to sit in another part of the room and ignore the teacher, Joey chose to track. He was displaying the same boredom as the other students, just in his own way. The movement was perceived by his non-autistic teachers as more disruptive (than giggling, mind you). So I told them basically to suck it up and either provide more interest, or leave him alone (only politer, because they have been very helpful and have been very glad to learn to accept and accommodate Joey, and to help his classmates to do so).

Perhaps a point I will always have differences with some others is whether or not the word “intervention” is appropriate. The word does indeed imply crisis. Autism itself is not a crisis, and I am concerned that it is being perceived as a crisis. Autism is not a crisis- the lack of preparation and available support and service is definitely a crisis. But are families who need early services in need of intervention? Are they, in short, having an emergency?

I cannot speak for other families. I can only speak for my own, and specifically in our situation with Joey: we had an emergency. When we began this adventure, we were at the brink of a severe problem. We didn’t just need service- we needed intervention, and we needed it yesterday. We had a child that had been happy and healthy turning into a child who was frustrated and angry. I am not sure how to explain this, standing in my position as a parent, knowing that I am trying to explain this to people who were experiencing developmental first-hand. Perhaps I need to point out the basic difference in the two roles. Children grow up whether you parent them or not.

It is a parent’s role to teach and guide the child how to cope with living, and basic skills such as healthy diet, healthy habits, and functional living. It is the child’s role to learn these skills, practice them in a safe environment provided by parents, and incorporate these skills into a hopefully healthy life. What they do with life from there is up to them (unless you have parents who dictate what you are going to be when you grow up). We end up with many conversations like I had with Andy today:

“Andy, what would like for lunch? Would you like peanut butter and jelly, or grilled cheese sandwich?”
“We can have ice cream after we eat lunch. Would you like peanut butter and jelly, or a grilled cheese sandwich?”
“You need to pick a sandwich first. Would you like peanut buter and jelly, or grilled cheese?”
“Great, we’ll have grilled cheese, with carrots. Do you want apples or pears with your cheese sandwich?”
“We can have ice cream for dessert. Would you also like apples, or pears?”
“Good choosing! We can have grilled cheese with carrots, and pears, then we’ll have ice cream. Does that sound like a good lunch?”

So when I have a child who is frustrated, screaming, and knocking their head on the floor from the frustration, then it is my job to step in- to intervene- an help this child learn skills to cope. What skills are needed? For Joey, he needed to learn to communicate his needs, and skills for venting frustrating that were not harmful to himself or to others. ABA is one method for teaching such skills. In fact, many methods use the basic framework of discrete trials. Speech therapy allows for communication. Occupational therapy helps him learn to regulate his own body and sensory input. ABA teaches him how to learn. Being in school helps him learn to negotiate social situations, group situations, focus, and specific academic tasks. Most “normal” kids do not have speech therapy, occupational therapy, ABA, or preschool at the age of 2 (or don’t need school at the age of 2, though the parents may want it.)

Compare this even to my other child- he will be getting speech therapy because he has some motor planning issues that result in articulation problems. He has some OT to help him cope with sensory issues and motor planning. I’ll start him in school two days a week in the fall- not because he needs it, but because I want him to have some exposure to other children and other adults, so it won’t be completely new when he goes to kindergarden. We do not have an emergency, we’re just shoring up some perceived deficits to make his life easier.

As a parent, watching Joey spiral into frustration, anger, and depression at the tender age of 2 is not only heartbreaking, it is my job to act, and to intervene. This wasn’t just about him drifting off into a world of his own- this was about a child who was becoming increasingly unhappy and aggressive out of aggravation with his inability to communicate and control his own body.

Wednesday, May 16, 2007


It was a gorgeous day today. Andy and Joey got to play outside. Andy even got a trip to the park. Next week, Andy will be three, and have good look-over by our developmental pediatrician. I mentioned this to one of our ABA therapists today, because the Wednesday session is cancelled next wek for the event. I was a little taken aback when she replied, "yeah, you'll want him checked for Asperger's. He got enough oddities, I thought you'd get him checked sooner or later." t was a bit of a bite-the-lip moment. Most folsk when I say I'm havig Andy checked for something, they laugh. After all, he does so much better than Joey did at this age. But there are still the random meltdowns. The echoing when he gets upset. The toe-walking. The sensory oddities. The motor-planning and articulation issues.

Joey had OT today, and I sat with some of the other parents in teh waiting room, watching the rain roll in. The sky gets so black, and then it flashed, and came down in sheets. It wasn't as good as a monsoon rain, though. We were in Calcutta, and the rain was so heavy you couldn't see your hand a foot in front of your face, just from water. Or waking up in Allahabad, to find you can't leave the hotel because the courtyard is flooded, and the river was a twenty minute rickshaw drive away yesterday. They brought our breakfast to the verandah. The rude tourists who were with us, they let them wade through the flood to their bus. But not us. We weren't allowed to touch the flood water, too dirty, stay inside today, tomorrow it will be better, Auntie. WE bring the food to you, no problem, we are used to it.

The rain poured all the same, and we had to go home. Mom and Andy were waiting. We waited for the worst to pass through, took a deep breath, and ran. Joey like getting his feet in teh water as it flowed like a river over the parking lot and under the car. He loves water. He would have stood there all evening if I had let him. But into teh car we go, and home through the storm. JOey chats a little about the weather. "It's RAINing. Look at the water. Water, mommy. Rain... sun... rainbow! It's RAINing." I try to think of rain songs, and I hit one he knows from Little Bear (It's raining, it's pouring, the man in the moon is snoring, he went to bed with a cold in his head, and he won't get up 'til morning...) We sing it a few times. HE goes back to the perseveration. It's practically over when we get home.

But there has been a fatal error. Joey's toy shopping cart, that he has been using for the last couple of weeks to track through the house, has been left accidentally outside (where he was tracking on the deck). It's wet, and can't come in teh house like that. Disaster. Now its twenty minutes of "Cart! I want cart! I want cart NOW!" and screaming, as he can se the cart outside, through teh window, but is not permitted to fetch the beloved possession. When the rain stops, I run out and fetch it in, and dry it (and its contents) carefully. But disaster has struck already, and we are off-kilter for the rest of the night.

We'll see what tomorrow looks like, when we rise in the morning.

Tuesday, May 15, 2007

Objections to Early Intervention

The latest on my craw's radar: people who (appear to?) object to early intervention. Remember that my son is five. He is a product of early intervention. I believe in making sure that ALL people get the services and supports they need- that is, early intervention is not about telling other people it is "too late" or an alternative to providing service to older children or adults. Early intervention is identifying children who need services and support as early as possible and providing he service and support they need. It is about trying hard to get kids learning the skills other "normal" kids pick up on their own, and helping them learn to function, to play, to learn about their world and communicate with their fellow human beings.

Although this attitude may not be shared by all folks who believe in early intervention, I can only speak to the attitudes I know. Maybe there are folsk who believe they are curing their kid. I have no such allusions. I am teaching my autistic child to live in a world designed for people who are not autistic.

But the objections to early intervention seem to be something I can't put my finger on. I sometimes have this trouble between when my critical thinking alarm goes off ("there's something wrong with this argument...") and when I actuallyhave time to process what the other person is arguing to be able to pinpoint the problem ("Oh! I see. You think the sky is yellow. Well, that doesn't work.") At this stage in my processing, I can only say that when people scream very loudly and get very upset and start attacking other people because of their parenting choices and semantics of their goal, there is usually something wrong i the argument- especially when they suddenly seem to be in my face.

Sometimes there is something wrong with my own thinking. I'm learning all this too, after all. I am not a perfect savant about autism or even about Joey. I'm no mindreader, and I have to learn what he's thinking and feeling the same way other people do- I'm just better at understanding him than most other people. I understand that I don't know everything. But usually by the time I have ideas that get out here, they've been pretty thought through, so that they are at least reasonable, even if not always right. There is no need for shouting, or getting surly. Present me with new information.

But usually when I have someone surly and sharp telling me what an idiot I am, there is something wrong with that side of things. The assumption of stupidity is a huge red flag. The assumption of lack of research is another red flag. It makes me start to look very carefully at what is being said- and what is being implied.

Back to the case in point: early intervention. So far, there seems to be an anti-early-intervention segment, and they are very, very angry. So far, the objections to early intervention seem to be:

1. You shouldn't medicalize child development.
2. It is impossible to diagnose autism before age 2.
3. Children before age 2 often seem to be autistic.
4. Early intervention is intended to "cure" autistic children.
5. Early intervention services deny services to older children and adults (apparently because the services are intended to "cure" autism.)

Child development is already medicalized. That's why we go to a pediatrician for well-baby appointments every 6 months.

If we had been knowledgeable about autism, we could hav diagnosed Joey before the age of 2- closer to 18 months. He was showing signs while we were still in the hospital, but diagnosing based on sensory problems would probably be very tricky.

My non-autistic child is VERY different from Joey- even with the sensory problems my other child has. With them side-by-side, there is no mistaking that Joey was autistic from birth. I have not met a normal child who "seemed" autistic the way autistic children do before age 2. I have met children with other disabilities who present very similarly to autism. And for the record, Joey did have things like eye contact, smiles, and interest in people as a baby. No one sign is going to give you a diagnosis of anything, much less autism.

Early intervention helps children learn valuable skills and gain functional skills and education that other children "pick up" through imitation and normal processing. It helps autistic children learn how to learn. It does not cure autism.

Early intervention does not eliminate the need for future service, and does nothing at all for people who currently require support and service. It lessens the needs for specific types of service for children who are able to benefit from early intervention.

In Joey's case, the smiles were disappearing. The ability to communicate was not developing. He was becoming increasingly frustrated and upset. WE WERE LOSING HIM. That may be hard for some people to understand. It seems particularly difficult for some autistic adults I have met. From this point of view, I was watching a happy, healthy, loving child turn into a sullen, frustrated, angry child. As a parent, that means something must be done. Now. If I had not moved my butt and gotten him into some kind of intervention, what would have happened to him? I can tell you this: he would not be speaking. He would have remained rustrated and angry. He would have had less and less access to the world around him. I understand that some people think that this is what I should have done- allowed him to "be autistic" and do nothing. I can't please everyone.

Monday, May 14, 2007

House Hunting

I had a few minutes with my friend Christine this morning. We haven't seen a lot of each other lately. She's the one with the three hydrocephallic boys, and I have my two little guys, so the two of us are definitely hopping. She needed to go to the grocery store this morning. Andy and I were not doing anything at all, so we picked her up for the ride. I have a rental, because my car is in the shop from being rear-ended, and we thought it might be nice to ride around in a new car for a few minutes after we got out of the store.

We drove lazily around town looking at the houses for sale. There are quite a few, because the recent assessments on everyone's property just doubled, and people are being taxed out of town. The problem is, if you sell, where do you go? You have to leave the area. The assessments are obscene, by the way. I have a nice little house. We were very, very lucky to get it, and just a couple years before things started going crazy. It is right in town, and I have made a nice little garden and everything. But it is not worth what this assessment is saying it is worth. Maybe about half. But we're in town, on the east coast, in teh DC metro area. Apparently large numbers of people want to pay way too much money to live here.

Or do they? Several of these houses have been on the market a while.

Anyway, its not like we're planning to move, but it can be fun to wander around and look at other people's houses and gardens. Some need some work. Others are gorgeous. Oh, look at the gingerbread on THAT one! In the midst of this chatter, plans for summer, goals for the boys for summer, what we are going to do with ourselves in teh fall when Andy- the last of our boys- is actually in school two days a week. Dreams of getting housework done, yardwork done, porches repairs, ramps built, couches recovered. Dreams of time.

Generally, my house looks like a bomb went off in it right before the tornado hit. I am not a housekeeper. I keep my life in mounds and piles. If I have no time, those mounds just keep getting bigger, instead of occasionally disappearing. It is also over-run by toys. this partly because of a lack of time, partly because Joey needs almost constantly supervision. Toys invaded our living and dining rooms because of this, when I kept him occupied while I got things done. And then I stopped being able to do things. Both boys get very, very upset if I do stuff. Its very, very strange. And then keeping them engaged is very important, so I spend a lot of time- poor me- playing with them. ;) Having them be able to spend some time outside by themselves has been lif-changing. I can cook dinner- real dinner- every once in a while. Its nice to have some real food.

We're having tacos tonight. I can divide everything on teh plate, so Joey will eat it- even the meat. Yay for dinner!

Once Christina's boys come home, it is a constant schedule of feeding, changing, and trying to get her housework done. The housework usually ends up not happening, but her house always looks neat as a pin. I have no idea how this is done. :P

Sunday, May 13, 2007

Mother's Day

It is a Mother's Day tradition now that my mom and I got to a local, family-run nursery and buy flowers for the yard. These are then ceremonious taken home, and left to dry out in their little plastic pots. Sometimes I get them in the ground and revived. But it sure is fun picking them out.

This year I had the boys pulling the wagon for me. Its one of those moments that hits me oddly. When joey was Andy's age, he did not pull the wagon. He did not try to pull the wagon. I spent most of the time chasing him among the flower-tables, but he never even saw the flowers. He had been in school most of a year, and had about 25 words. If I bothered to move about two feet, I could pick up his baby book and tell you what the 25 words were. "Flower" was not one of them.

This year, Andy was all about the flowers, the wagon, and the brothers wanted Mommy to pull, then Andy wanted to pull Brother (Mom had to help), then Joey wanted to pull, then they both wanted to pull the flowers for me, and they both wanted Grandma to watch. Andy did a lot of hard pulling. We could discuss it as a sensory issue., all the heavy work, but what fun is that? Andy wanted a plant, he got his own grape tomato plant, he LOVES grape tomatoes. I hope we get a chance to plant it together tomorrow. Joey wanted a blue flower. I found some purple verbena, and that seems to do. I also got some geraniums for the front, and some dahlias, and some thyme to spread on the little paths- they'll smell good as boy feet crush them. I may try to track down some more to edge the yard. I have a lot of mint already growing. They didn't have any lemon thyme or pineapple sage, so I'll have to go elsewhere. Before I had boys, we'd get herbs at the Cathedral, but I doubt I'll get up there- again. I'd also like some lamb's ear, because it would be soft and be another good edging, another texture, another smell, and the silvery leaves add another color.

I know- just what SID kids need- a sensory-overload garden.