A Day Against Disabilism

Every day I am amazed by the rampant disabilism in special education. Here is an education system that is supposed to be designed to help, to support, to give these kids a chance to live independently and get an education; but instead you get full-pitched battles for resources that are not only limited, but designed to meet needs your kid doesn't really have (and in fact, I am finding most of the kids in the system don't have.)

Special education here is designed for severe mental retardation- so long as you don't also have a physical disability. We have a brand-new school here, an upper elementary built from scratch over the last two years. I have a friend who has two severely physically disabled children- whether they are mentally retarded as well is a matter of debate, since their physical disabilities make it impossible for them to acquire speech- and they are debating whether or not to send them to the new upper elementary school. Apparently, the special education classroom would have to be altered to accomodate them because of their wheelchairs and physical therapy needs.

Why? These people were aware of these kids in their system when construction- and even design- began. Besides, they likely won't be the only kids in wheelchairs they'll ever have. Why, in this day and age, would you design a BRAND NEW SCHOOL that is not fully accessible?

Now, let's go back to the speech thing. These kids' mouths are not formed properly, and speech is probably physically impossible for them (I defer to her expetise of the mom in this matter; I don't know the particulars). Little attempt has been made to give them an alternate form of communication. You'd think the school would work hard to give them some form of communication, even if it is simple switches or large buttons with pre-recorded phrases, so that these guys could at least communicate some of their needs. I am thinking seriously of buying such buttons for them for the summer, and having my cousin's boys (who are about the same age) record simple messages (like "yes, please!" and "no, thank you") and see if these guys would use them. They are 8 years old, and have no way to tell their mom they need something, other than tugging on her clothes. And why? Because they can't speak, they're not supposed to communicate?

These are the challenges of two boys who have obvious, clearly visible disabilities. People know they need help, it is blatantly obvious they need skills, accomodations, equipment, nursing care, aides, respite, the works. They have terrible problems getting these things. It took them years to get medicaid waivers. The school doesn't recognize their skill needs, and they have no academic goals for them- any progress is considered sufficient. I can only assume that is because such severely disabled children are not usually expected to live to see Upper Elementary- by people without disabilities. They are "low functioning" and will "always be dependent"... so the attitude- more or less subtle- is, "why waste resources on them"?

Skip to my own child. Joey talks. If you are not familiar with Oobi, Little Bear, Pinky Dinky Doo, Blue's Clues, Cars, Toy Story, and Franklin, you might miss that every word he says is based on words he's heard before. He likes other children, and has some stock phrases to start contact, but then he doesn't know what to do, especially if a children reacts in an unusual way- which is any way other than how Andy would react. He knows his letter, his numbers, his colors, can write his name, and can match and sort and make patterns- if you can get him to sit down long enough to show you. What chance has this child, whose disability is not so apparent, have at getting accomodations in a world that wants him to be invisible?

At least, they say they want him to be invisible- but then won't address anything that is actually visible, or do it ways hat would be sublte and acceptable in a "mainstream" environment. Needs to chew? Gum is a no-no, lets give him a chew toy. That chewing gum is far more "invisible" than having a plastic tube in you mouth is beside the point. And who needs brushing? That takes too much time, it has to be done every two hours, after all! Food issues are the parents' problem- we put the food we are serving in front of him. But you want to send in food? That's too much work for the teacher and aide. Social skills? Toss him in the gym with the HeadStart kids and hope he figures it out! After all, that's how other kids learn social skills...

And these people are special educators- he's in self-contained environment, not even an inclusion setting!

What is disabilism? It is an attitude that people who are not facing the challenges of disability are inherently superior. That their ways of coping and interacting are innately superior and preferred. That people with disabilities are, somehow, not as human, and have less right to try for independence and education. That people without a disability somehow know what is right and proper for people who do. That people who need support and accomodation are somehow children; or if they are children, that they are babies.

It is also the assumption that people shouldn't need to be accommodated, shouldn't need support, shouldn't have "special needs." The shock special education personnel keep displaying that their kids might have special needs is discouraging. How far would their day get without their coffee? Their few minutes of favorite music? Perhaps a cushion on the driver's seat, or hot water in their shower? Perhaps they like their food a certain temperature? We all need to be accomodated in certain ways to cope with living and functioning. To say my child's accomodations are unacceptable, just because they are unusual or different, is ridiculous. To deny him education in learning to self-regulate is equally ridiculous. It is discrimination.

Another Happy Sunday

With a dose of allergy meds, the boys went to church this morning after all. The Sunday School teacher and I had a little chat. Apparently, they've given up on days when the director isn't here to be his aide, and he wanders about and does whatever. Not what I wanted to hear, but they haven't tossed us out yet, so we'll keep working on it. It would be nice to have an aide in there for him, because with his gum, he is able to sit and attend- but still needs a little reminding that the rules apply to him. They also now have too many kids in there to keep track of his sensory stuff, and having someone in there could make sure he got his vibrator or his gum or his chair cushion when he needed it, and teach him to get these things for himself. But he makes it through, he's in with kids his own age, and nobody's gotten hurt. So that's a good thing.

The boys were still antsy, so I took them out to Wakefield. This is a regular trip for us, I'm sure I've blogged about it before, but I'm no going to swim through right now to check, and for those of you who just pick up blogs where they are, I'll save you from wading as well. Wakefield is the birthplace of George Washington. It is a working colonial farm, with animals and everything. It's also a pretty safe place to let the boys run, and not a lot of people go there. So we go there a lot when the weather is good. I took some pictures today of things to make up a nature walk list, and while I was at it, I took lots of boy pictures and movies. They like seeing themselves on the TV, so I thought I'd make a little DVD. Besides, its calming. This is the calm before the week's storm...

We've decided that putting Joey into the speech and OT camps is the best option for him. Its going to be a little rough on me, and I have to figure out what to do with Andy (as in, what we can do together, not what shelf I am going to put him on), but if he can do intensive therapy this summer, maybe we can at least get him going with using his sensory book himself, make sure he can dress and undress himself, and do some other things in groups and independently, that will help him in kindergarden. I can also control his schedule better, so I can do the brushing and work on the oral issues (ie, get him to eat more foods). So this week I'm going to call up and say, "Since you guys were ammenable to this- this is what will happen." I expect them to promptly start having small bovines. If they don't, you'll be sure to know.

Because the boys can run at Wakefield, I end up taking a lot of photos of their backs. It seems strange for them to be walking on ahead like that. Most places, I have to have them firmly by their hands, so I mostly see the tops of their heads. At Wakefield, they run on ahead, checking out their freedom and the world around them. My boys get a chance to grow up a bit.




I like going to Wakefield. I think they do, too.

And so it goes

Usually on Saturday evening, Joey and I saunter over to the church to listen to the band. Joey likes music, especially involving drums and guitars, and since there arent a lot of people at the Saurday service, it gives us a chance to get hi used to the sanctuary and going to church and stuff without having too many people jostling him and making him nervous.

But tonight he would not sit down. Even when they started, all he could do was track, track,track. Track the banister, track the pews, track the cords for the guitars, track a seam in the carpet. Then he wanted to run out to the street, out into the halls, up and down the main aisle. Track. track, track.

This means one thing:

Joey is coming down with something.

This is really depressing, because we just finished a round of antibiotics because he had never recovered from teh croup. It means if he goes to Sunday school tomorrow, he will probably have a bad day and need the director to come be the aide again. We might not go at all, trying to head off the storm. He's already missed a week of school, so his schedule has already been a complete mess.

On a more selfish note, it also means I didn't get to sit with him for the half-hour to listen to the music while hugging a Boy- something I really could have used this week.

A Reminder!

May 1 is "Blogging Against Disablism Day." Let's all raise the call that people with disabilities are, first and foremost, people. I look forward to spending a lot of time online on Tuesday, reading everybody's thoughts and ideas about what it really means to be human- for everyone.

Who are these people, and what did they do with my IEP team?

Mom and I walked in to the strangest IEP meeting I have ever been to. This was the meeting for Extended School Year (summer services). These meetings have been a right royal fight for everyone here every year. Usually its a lot of wrangling to even be able to call a school person for advice at any point, and they complain as they fill out the paperwork.

Not this year.

Apparently, Joey's behaviors have been unavoidable this year. He's not a danger, but the slamming fo doors, clicking, and tracking have apparently been well noted and been very disrupting. It was decided that he qualified on that ground alone. I was shocked. Not only did he qualify, but I have a peice of paper here that says he will get 2.75-3.5 hours per day, five days a week, for eight weeks! I know th edoc wants 25 hours a week, but folks, this much ESY is UNHEARD OF here.

I have heard there are at least three other parents headed to mediation right now. I wonder if that has a bearing. OR maybe someone wants to try to put together a real summer program, and this gives them an excuse. Or maybe the immanent retirement of our esteemed director of special ed. Or maybe someone finally told these people to shut thir mouths and open their brains. Joey's teacher even stood up to our mouthy OT. It was incredible. I was beside myself.

So we have the documents. We're hoping to pin down the exact nature of the program before we put our names to it. We know the amount of time, the duration, that sort of thing, but what exactly will this be? The camps I want, or an in-house program? We made clear that we need to know soon, so I can reserve spaces.

Life is like a bowl of cherries

I don't get much sleep in the week before an IEP meeting. Even with one like this, where I have a plan, I get insomnia. When I get insomnia, I often end up with bad analogies and t-shirt slogans. Then I torture you with them. ;)

This one is "what its like to wok with our school OT.” I know disease references might seem offensive to some folks, but they do get across the sense of importance of the situation.


You're sick, and you suspect there may be something wrong with your endocrine system. There is only one endocrinologist covered by your insurance, so off you go. He does some tests, and tells you that you have diabetes. When you look at the results of the tests, they look bad, and you start some treatment for diabetes.

After a year, your test results come back with slightly better sugar numbers- let's say, 250, when you now know you're supposed to be under 90; but its better than the 300 you were. After a small lecture on how painful needles can be and the risks of insulin, you start a little insulin. In the meantime, another doctor you're seeing for a skin rash looks at your records and suggests you see an out-of-network endocrinologist who specializes in diabetes (note- for those of you unfamiliar with diabetes, you can get a skin rash if your sugar gets too high). Doubtful that there is much else to be done, because the doctor has been telling you that everything necessary is being done, you decide it can't hurt to have a second opinion.

To your shock, you are told that yes, you have diabetes... and pancreatic cancer. As you look over the tests, including one that most endocrinologists consider standard, but your other doctor didn't even do, it is practically staring you in the face.

Your other doctor remains skeptical, so you decide to get a third opinion. That also comes back screaming "pancreatic cancer!" (which would, of course, explain why you're diabetic). You take these reports back to your doctor, and note that both of the other endocrinologists recommend cancer treatments. Your doctor replies with bringing you some literature about cancer treatments, while telling you that these treatments are all extremely painful and risky, and you *could* try them, but why bother? Your sugar is improving with the treatment you are getting, and its the diabetes that needs to be controlled. You insist on at least some treatment for some of your other symptoms that have been revealed by the other testing, and to get your sugars under control. The doctor reluctantly gives you an increase in insulin.

In the meantime, not being an idiot, you begin cancer treatment with one of the other doctors. In trying to get your sugars under control, the new doctor suggests you might want to eat certain kinds of foods that are low in sugar. You take this to your first doctor. They freak out. They tell you that you need carbohydrates in your diet. They scream something about Atkins and South Beach diets. They tell you the cafeteria can't handle this particular request because of dietary rules. You note that the new diet seems to be helping to control your sugar, so they contact your second doctor and ask them to change their recommendation. Needless to say, doctor #2 is highly offended, and responds that dietary control of diabetes is extremely common, and her first duty is to her client, not convenience. The first doctor permits the diet, but still tells you they don't like it and you should eat plenty of carbs. You go to their boss. That boss tells you no one has ever complained about the endocrinologist, and he has to be able to treat pancreatic cancer, because the law says so, and when the boss talked to the doc, the doc seemed very enthusiatic about the new diet. He won't pay for the treatment you've been receiving from the other doctor, period.

It has now been another six months, trying to get this all in place. You first doctor does some tests without your knowledge. At your next appointment, he presents the results, saying, "You're are now doing so well on the insulin... wow, 100! You may not need that insulin anymore! And look! Your cancer has been cured!"

And I'm supposed to have confidence in this person?

Round 2

Oh, yes, I got the email this morning: "I didn't say that! I said we have to be careful interpreting the results!"

Right. Does that mean you don't show care in interpreting the results of other tests and evaluations?

This is NOT increasing my confidence in this woman. It certainly shows me that she is 1. Not familiar with this test and 2. not familiar with how to properly consider the results. She's surprised that we would want to know this information, to look for gaps in Joey's skills. Why on earth would we want to know this information?

I thought we were about to write an IEP?

Battles

For some reason, the school OT just can't say the words," yes, ma'm." I can only imagine it is a matter of pride. If she doesn't fight me on every single request or suggestion I make, she loses some kind of brownie point somewhere. She keeps sayign she wants to get along with me, then won't STFU.

I have requested the school evaluate Joey using ABLLS (Assessment of Basic Language and Learning Skills). It is a test designed to check on skills needed for 5-7 year-olds to function. It is commonly used to test preschoolers, to give educators a gauge of the skills needed for elementary school, including kindergarden. It also is often used to design ABA programs. It is not a comprehensive test, but it does test skills that are not covered in other common gauges, such as the LAP-D, and is designed specifically for kids (like Joey) who have language problems or delays. Back in September, I kept asking what skills Joey would need for kindergarden, and was basically told "we'll take care of it." So I am already annoyed to discover there was a test they could have given him to find the gaps in his skills and address some of them. However, I am far more annoyed at the email I got from the %&$^#*! OT today. It basically says "well, he doesn't need to do all this stuff for kindergarden. It won't tell us anything his teachers don't already know. It won't give us an age equivalency or standard score. This is usually given to low-functioning kids." In other words, "What are you having us do this for? I don't want to bother."

Of course he doesn;t need it all for kindergarden. But he needs some of it, and this will tell us some of things he may be lacking. It will tell us some of his strengths as well as some of his deficits. It is a yes/no sort of thing- either he can do the skill listed, or he can't. Its not about age equivalency, it is about tracking actual mastery of actual, functional skills.

These teachers that know him so well had to be fought to get him goals for bilateral co-ordination, social conversation, and visual motor skills. They were shocked that he needs sensory accomodations. Joey is just a barrel FULL of surprises!

I asked for the test. They do it in the fall (why bother? The IEP is being written NOW). I asked for it by NAME.

The proper response is "Yes, Ma'm."

Red blocks

Joey loves blocks. Megablocks are especially wonderful things. He doesn't build with them. He carries them around. The Megablocks have larger "pegs" like big circles, and he likes to count them. The line-blocks, with three or four of these pegs in a straight row, are the blocks he loves. The rest rot in the toybox (Andy has already moved on to Duplos).

I work on Saturdays. I actually work three jobs, as I teach two places as well, one online and one live. the live class only comes around every couple of years, but I do love it when I have one. The online classes are just OK. Too many students think that having an online course is a lisence to sass the professor or skip the work. Anyway, that's not what I do on Saturdays. On Saturdays, I hole up in my bedroom, in my hubby's oversized recliner, with a computer in my lap, and score GRE writing assessments. (No, I can't tutor anybody, its against my contract. No, I can't grade your essay, its all automated and I have no control over which essays I get. Its all standardized, anyway, so it wouldn't effect your score). On breaks, I do weird stuff like write blog entries and change bedsheets. Its a pretty good deal. Sometimes I even stay in my pajamas for the morning (I'm weird, I like to be dressed).

So I am sitting here, holed up for the day in my comfy chair, when a little face appears at teh door.

The idea of letting the boys come up the stairs without escort is new for us. Joey's motor planning is usually so poor that stairs were a major source of concern and falls. Andy is better, but still, he's not yet 3 years old, and we want to know what he's DOING up here. My house is not exactly clean and neat, and there is plenty of trouble to be found. So much for childproofing.

The other problem with independent stair climbing is that Joey has trouble remember what he came upstairs for, and then just wanders about the upstairs, and finally melts down, because he knows he came up here for something, but what was it? I can sympathize with the frustration there, it happens to me all the time since I was pregnant. If anybody needs anecdotal evicdence that pregnancy causes brain damage, I'm your girl.

So here I am, and aroun the corner comes a little face. "Hi Joey," I say brightly, wondering where Dad is.

"Red four?" he replies in a hopeful question. I'm stunned. He came up the stairs, and knows exactly what he wants. And better yet, I happen to know he left his red blocks- a four and a three, his usual set- right here on the chair. HE knew which room he wanted andd everything!

"Do you want your red blocks?" I ask, to encourage speech.

"Red blocks." Red is Joey's current favorite color. Everything has to be red. I produce the required booty, and the little face lights up. "RED blocks! Thank you!" He fetches them from my hand with a kiss, and is gone.

My baby is growing up.

Sympathetic Response

I have been having a very strange problem lately. I have been having trouble with filtering and processing sound. I've always had trouble with TVs and being tired- if I'm tired, and you want to talk to me, turn the TV off, or I can't even hear you. But now its like I can't do it at all. If I'm in a room and there are other conversations going, I can't even hear the person speaking to me, and often find I have looked away- even when I know I am being spoken to. It happened today. Miss Carrie, one of our speech therapists, was giving me the latest results from an evaluation she had just completed. I know she was talking to me. I can even tell you some of the words that emerged from her mouth. But all I could hear were the boys, and suddenly I realized I missed the conversation, perhaps she had asked me a question? She was now asking me if I was nervous. About what? Whether Joey was apraxic? About the possibility that even this diagnosis wouldn't get the medical insurance to kick in something? I don;t think it was connected to what I hadn't heard, though. I think she had just noticed I wasn't there anymore. I feel terrible about it, too, because I'm sure it seems rude for me not to focus on her when she's telling me important stuff, and has lengthened her day by an hour to test him for us, and all. I need to do something really nice to thank this person, she really is bending over backwards to help us, and not many people are doing that these days.

But in the meantime, I am definitely seeing an increase in this kind of occurance. One part of me wonders if this is what happens to Joey when he can't focus on a task- because I can't even really tell you where my mind was, I just snapped back and realized it wasn't focusing on what it should have been focusing on. Another part worries if there is something changing, or if this is just a sympathetic sort of response- I am either noticing these things more because I know more about the problems Joey may be facing and autism generally, or they are occuring more as a psychosomatic response to Joey being autistic, and the stress of fighting with the very people who are supposed to be helping us, the "school folk." Or am I just getting old, and this is part of that? Or am I suffering some form of exhaustion, and need to see somebody? Because it really needs to stop. And if this is what its like to be Joey, then I definitely need to help. I worry about it happening when I'm driving. Will I tune out of teh road in favor of the boys, or the radio, or the trees passing by? That would be Not Good.

The Parent Role at an IEP meeting

As I send off my latest request for an IEP meeting, I just had a very sad thought.

Being a parent at an IEP meeting is kind of like being a passesnger on a plane. You are part of the team inteded to result in a pleasant flight, by making sure everything is groovy, and stays groovy, from teh time you get on to the time you get off. Included in this team are the pilots, the attendants, the mechanical crews, the air trafic crontrol folks... you get the idea.

Normal, reasonable people know that when come onto the plane, you make sure your luggage fits in the overhead bins or under teh seat in front of you. If you need a seatbelt extender, you request one. You stay seated when the stay seated light is on. You ake sure smoking is not done in the bathrooms, your food and beverage choices are made reasonably, and thus the flight goes smoothly. You need to have a general idea of how the emergency exits work in case there is a problem.

However, on an IEP Flight, you as the passenger are also expected to understand how to fly the plane, serve the other passengers, and have full knowledge of how to maintain and even fix mechanical and other problems mid-flight. If an engine falls off, you're expected to know how to safely land the plane, re-attach the engine, and get the whole mess back in the air. The pilot won't set course or work the instruments unless you spefically request that s/he do so, and then often says they don't have the resources for working the controls anyway, and besides, do you really NEED to work all those buttons, levers, and gauges? Can't you see fron the windshield where you are going? When you go to find resources to help, you find a flight simulator; but you soon find it is either for an outdated cockpit, a simplified cockpit, or when you go to actually request the controls be worked properly, you are told that you just had simulator training, the pilot has had real flight time! So you try to sign up for flying lessons. Now you're told that you're still just an amateur. But they still won't work the controls unless you specifically ask them to do so, and say exactly what to do nd exactly when.

Oh, and your flight is already departing from the gate. And if you dont do all of this correctly, of course you will crash. Oh well, sucks to be you.

Home Not-Alone

So Joey has now missed a week of school. We've been relaxing and trying to get him to recover from all these infections and coughs and creeping crud. A taste of summer vacation, if you will. I've caught up on my episodes of Pinky Dinky Doo, learned all the Oobi and Ply with Me Sesame games on Noggin, and made that lovely movie. I can't really go anywhere, because of Joey's problems with his antibiotics, and I can't just let them loose in teh yard because of the chilly weather (they're supposed ot be recovering from these colds, not picking up on new ones). We've pretended to be dogs, cats, cows, Space Rangers, Little Bear, Duck, dinosaurs, Little Bear pretending to be a Space Ranger, Mr. Guinea Pig, and racing cars. We've done painting, drawing, coloring, put together puzzles, played trains, played blocks, played with the play-kitchen, played with play-doh, and played with some our big fancy toys, like our Cars playset tent and our racetrack. In other words, it's been like a rainy-day week here.

What shall we do today?

I was thinking of more coloing (to go with Andy's listening therapy) followed by exploring the basement playroom, maybe getting out our tunnels. Then lunch, and storytime. Andy then has his nap, and Joey's therapies start. We have ABA, OT, and a music lesson today. Then we should get home for dinner and bed. Whew!

video

That's my Joey. :)

Ear infections

One thing you need when you are sick is rest. Joey appears to hae an ear infection that is resistant to Zithromax, which sucks, so we changed his antibiotic. Now if only I could get him to SIT DOWN. He has as much energy now as when he's fine! We are trying to tempt him with Oobi and Pinky Dinky Doo games on Noggin's website, but... bounce bounce bounce! IF the child would just take a NAP!

A Long Day

So the boy starts to stir about quarter to seven this morning, with a moan and sob, and "My ears hurt!" Just a few direct questions makes it clear- he really did just tell us not only that he is in pain, but that his ears are the specific, actual problem. Holy cow, my son can communicate with me!!!

So I pack up two little boys and head off to the Medic One, a walk-in clinic we tend to use, especially for ear infections. And bingo, we have one. Fill the scrip, give him a dose, pick up grandma, and we're off to Kluge.

Charlottesville is lovely in the spring. 270 was planted for flowey effect, and the redbuds, dogwoods, and cherry trees are in full swing. Very pretty. When we go back next month for Andy, I hope the azaleas will still be in bloom.

Anyway, nothing too new and exciting. Dr. Blackman is still nice, supportive, and very interested in Joey's progress. He wants us to work on social skills. The OT wants us to try brushing. The PT wants him able to climb into a sling-swing. The SLP says he's progressed in receptive language a full standard of deviation, so now he's just breaking into two standards of deviation, instead of being a full 3 standards of deviation behind. So he's made up some ground. We didn't test expressive, but he's about to get a full eval from our private OT anyway. We were just testing the waters. Why, I don't know. I keep calling them saying I want a full eval to get a sense of where he is, and when we get there, they're all just consult appointments. But at least I''l have some letters with "Kluge" in the letterhead saying he needs services. They'll promptly be ignored, but there you are.

We'll probably wait on teh brushing until summer. If I can't get this school OT to even give him gum, I can't see expecting her to do brushing in a supportive, appropriate way. After all, when it was mentioned before, she blew it off as "too difficult, too time-consuming." If it works, what's a little time?

RED

Today, Joey is five years old! Happy Birthday, Buddha Buddy!

So he got up this morning, and started rummaging through the clean clothes (which tend to sit in the hall with the washer and dryer, rather than being folded and put away in a timely manner). When I asked him what he needed, he said "Red one! I want a red shirt!"

Allow me to stop and pick up my teeth from the floor. He responded to me... in a sentence... expressing a preference. My Joey! What a great birthday present!!!

After a good deal of rummaging, we did finally find a red shirt. I was surprised he didn't have several, usually we have a variety of long-sleeve t-shirts from teh Lands' End Overstocks, but apparently they are all size 6, and have been passed down to Andy, and got mostly replaced by blue and orange shirts (the red ones must not have been on sale). But I finally found one that fit him, and all was groovy. I got him dressed, and started on Andy, who wanted his favorite dinosaur shirt this morning.

Joey started down teh stairs.

Last night, I prepared for the Birthday Morning by setting up a playtent in teh livingroom, and arranging his presents. So as I am dressing Andy, Joey starts down the stairs, and sees teh tent, and says, "Oh! Nice surprise!"

I could have cried.

This burst of verbal-ness is actually something of a shock. It started when he was put on the oxygen during our Croup Crisis a couple weeks ago. He's been using sentences ever since. We know Joey does these burst-breakthroughs, but to have it coincide so perfectly with the oxygen and steroids (he was put on steroids for the croup) is just strange. It was so dramatic, I'm going to have him checked again for allergies, since this steroid helps stem allergic reactions.

Tomorrow is Kluge Day. I don't expect to learn much new, but just to document where we are. I'll keep everybody posted. :)

Andy

I don't usually say much about Andy here. This blog mostly focuses on autism, and my autistic son. However, today was an Andy Day, and there are clouds on the horizon.

We have Andy doing something called Therapeutic Listening. Its one of those therapies that sounds like a duck, but it can't hurt him, so why not try it? Andy, like me, is highly sensitive to sound, and appears to have some other sensory issues going on that make him dislike crowds, avoid too many people at once (even familiar ones), and get very, very grumpy. He also has been doign a lot more toe-walking. He doesn't appear to be autistic, but appearances? What would I know? We've got an appointment for Dr. Blakcman to give him a look-see in May. In the meantime, we have the Listening. He listens to modulated music for 30 minutes, twice a day. It actually seems to be helping, as he will now listen ot the music on a normal volume (at first, I couldn't even hear it and he would pitch a fit), and will do a single activity for the half-hour, such as playing with playdough or doing puzzles. Who knew?

My private OT.

Anyway, we're also trying to do a general eval, and that is much harder. Andy has a lot of trouble following instructions, espceially from strangers (he does just OK at home). He seems to be doing something very strange- his skills set is all over the place, making the test nearly impossible to score. The joys of standardization. In the meantime, the speech therapist took a look at him. He's having some trouble with articulation. His language use seems to be ok, but understanding what he's saying can be next to impossible. We're going to see if the insurance will cover an eval and therapy for him. Then we shall see what we shall see.

I really don't want him in teh hands of the special ed folks. That's just won't do.

Easter

We had an interesting morning at church today. The church insisted on having the kids in service today, so they started the service 15 minutes early, then planne to send the kids to Sunday School after "children's time." This meant I had to have Joey in a huge crowd of people (Its EASTER, people!) and then have him sit in front of all those people and try to participate in an activity before going to Sunday school. What a great idea... not.

Fortunately, Joey performed beautifully. There were too many people in the service, so we set up camp in the vestibule. Fortunately, the nursery was open, so Andy got an extra few minutes to play. There was NO WAY he would be able to deal with that many people all at once. Joey wanted to go up and see the instruments, so we ran up the side aisle. Our service has a deaf couple with an interpreter in teh front row; Joey reached the front and the intepreter was there signing, and stopped, fascinated. He had me hold him for a while to hear and bounce to the music, and watch the signing, and he was such a happy little child. When we ran back to the vestibule, it was packed with people; no longer a quiet escape from the crowd. Yet, Joey did not meltdown; instead, he started barking like a dog and tracking the lines in the floor. We got some funny looks, but since he was managing to control himself and make himself comfy, I was prety proud of him.

So Children's Time came at last, and up we went. We sat towards the back of the crowd of children, in front of our deaf friends. The children's pastor had the kids sing a song; I wasn't familiar with it, but JOey was trying hard to sing along, so they must have been teaching it in Sunday School. Of course, his procesing problems meant he remained a verse and half behind, and he was getting frustrated; he knew the others were ahead of him. He sat in my lap and tried, though; I am SO proud of him! And then the amazing thing happened.

The deaf lady caught his attention, and was signing the song to him; and he tried to sign back, and sang along.

The whole visual thing just struck me, then and there. I know Joey is highly visual, and learns best with visual cues and aids. TV is a great boon for us. He just loves the idea of reading. He's a very visual person. But to see him able to process the visual cues so much faster, and actually keep up... I am going to spend some time this afternoon looking for signing classes. It would be such a simple way to help him keep up with the conversation, to be able to give him those visual cues. I know he'll need to get on in the world without signs, but he also will need to keep up with work and lessons, and having a way to help him not lose that ground has to be worth something.

April Showers Bring May Flowers...

...but April snow is ridiculous. It's the day before Easter, for pity's sake! Allan says we shouldn't dye the eggs- just put them out in the snow. Instant hiding, with the addition of staying chilled.

Parking

I live on a city street that has no posted signs about parking. It has become something of a bone of contention among the neighbors. The houe next to us has several grown children, an apartment, and two couples living there, and everyone has at least one car. We have three vehicles (two we use regularly, one is a Jeep that we have retained in case of snow and use as a truck). The other three buildings around us are all rentals- a duplex, a house, and three aparments. Guess what? they all have cars. We have a driveway. The people next door have converted their yard to a 3-space parking lot, and they have two lengths of street frontage (they are the corner lot). Yet we still have troubles.

My driveway actually parks two cars, and we used to park the Jeep in the end of it, since it wasn't used much. BUt the folks next door insisted on parking a car in front of our house. Usually, there are two spaces in front of our house, but they inisisted on parking in the middle, so that my husband had no-where to park but across the street, which seemed to us to be rude, to park in front of someone else's house all night long (it was annoying us, after all...) so we learned to park the Jeep out front. Then we had the second space that was just right for my husband's car, and we weren't being complete nuisances by blocking up the street all night long. We didn't leave nasty notes and we didn't call the police, we just parked our car. After all, it is public parking.

Now, what this means is there is no place for mom to park when she comes to help watch my little guy while I drive the other one around to therapy. And there is no-where to park for my therapists who come. They cannot park in the driveway, because I also cannot be blocked in when I have to go to teach; and my mom has a lo of trouble getting in and out of o driveway, since all of these people have large SUVs they park on the street. Besides, I would block her in when I came home, or have to park on teh streetmyself. So to the street she goes. After all, it is public parking.

The folks across the street have started leaving notes on the cars of people who come to my house, implying that it is no longer acceptable" for anyone to park in front of their house. Confused, and not a litle annoyed, I called the police to check on parking regs.

Yep, you guessed it- it is PUBLIC PARKING. As long as they are not blocking driveways, too close to the corner, too close to a hydrant, and close enough to the curb, ANYONE can park ANYWHERE along the street.

Although I have advised my folks to try to park a little bit down the street from these people, sometimes there is little choice. So I put a note on their door asking them to stop harrassing my therapists and respite workers.

I expect to have to start paying for paint jobs soon.

Morning Meeting

So I survived the meeting with the school OT. There were severa snide comments made that I could have replied to in a nasty way, and made everything unpleasant, but I was too chicken. Bok bok. Besides, what would it accomplish? I didn't have a tape recorder. I hope I made my position clear: I am not out to "cure" Joey, but I expect the school- and her- to help support him so he can function in a world that is not friendly to autistic living.

Note to school people: here are some comments to steer clear from when you are dealing with a parent who is already upset:

"Gee, you seem so good at research and know so much, I thought you knew everything! I'm always taken aback when there is a hole in your knowledge!"
What the parent hears: "You're a know-it-all. I'm not going to help your kid. You do it."
"We're not against sensory integration. I've set up a sensory room [here] and [here] and I helped set up the one in Joey's classroom!"
What the parent hears: "Now that you complained, I'm doing the minimum I've been told to do so you can't sue us."
"You know, sensory integration won't cure Joey."
No shit, Sherlock. How many presentations have you been to where I explicitly state, "Autism is not cure-able, but it is treatable. We want to help Joey function in a non-autsitic world."? So what I hear is: "I haven't listened to a word you've said."



In the end, I think maybe I ought to go back to school. I need some coursework in OT, Speech, and development. These people are NOT going to help us.

K-I-D... spells... kid!

Joey's favorite toy this minute is a leapfrog phonics writing thing. We haven't been too worried about it up to now. He likes letters, it is comforting for him, and he's been learning to write letters, spell words, and make sounds. the words are the funniest. It has a setting where you can spell out three-letter words, and if it is a word, the toy tells you the word and praises you (K...I...D... spells... Kid! Great job!) When Joey, pressing random letters, discovers not only a word, but a word he knows, he just beams with delight. D-O-G! Dog! Wow!

The problem is that he is starting to perseverate on it. Instead of doing his work, he is echoing the toy. Instead of participating in class, he echoes the toy. Instead of interacting with the world around him, he echoes the toy.

Hence the seeking of a doctor yesterday. Is he uncomfortable, maybe sick? Is he using this toy to comfort himself because he is uncomfortable, unhappy, afraid? Is there something wrong at school? Are we doing something that is making him want t retreat into reciting, echoing, letters? With all the advances he has made, he still can't tell us. He thinks the question "Are you OK?" is, without fail, "I'm OK." Its a form... and increasingly boring one... not communication.

I meet with the school OT in the morning. I haven't much faith. This woman and I have personality clash issues in the first place, and now she's threatening my kid... and has actively worked to deny him service. I'm expecting the whole mess to either last five minutes, or drag on in hell until I have to extract myself to pick up Joey. I wish McDonald's sold beer.

Trying to see the doctor

It sometimes amazes me what people expect from children. Joey has been getting cold and clammy, and even sweaty, so I tried to take him in to the doctor this morning. We wanted to be sure it was connected with coming off the steroid, and not anoter problem. Our own doctor can't see him until Thursday... so we often go over to the Medic One, a walk-in clinic. I got there for opening, but we were still fourth in line. OK, I thought. 45 minutes. A little long for kids to wait- and I had both guys with me today- but we'll deal.

An hour and a half and two meltdowns later, we were still waiting. The first people hadn't come out yet. The other folks in teh waiting room were giving us the looks-could-kill scowls and the why-can't-you-control-your-brats frowns (after all, they weren't feeling well, either- why would they want to see two little boys screaming, kicking, and hitting their mom? TWICE?) The staff was getting annoyed with us, too. They couldn't tell me how long it would be. No one could tell me anything. We finally gave up and left. I'm just going to keep Joey quiet for today, and if he's still not right, we'll try again tomorrow.

Sometimes, you just have to post a llama.

Official hoops

We got the official letter from Edd today, the Director of Student Services. Ths is the letter that takes two pages to say "f&*# you." The OT is supposed to meet with my OT and I and "collaborate" on a sensory plan for Joey. Like my private OT works for free, or that we can come up with a single plan, and it is all done. And all of this is supposed to be a "good faith effort" on the part of the school. Like they 've all suddenly had a religious conversion and can now handle sensory issues like professionals. Oh, and I'm supposed to meet privately for "coffee" with the woman who thinks my child needs no summer service, has no coordination issues, and shouldn't have gum because it is "against school rules." Yes. Riiiiiiiiiiiiiiight.

Oh, and it thanks us for being such wonderful advocates for our child. Right. If I'm such a wonderful advocate, why isn't Joey getting an appropriate education? Or rather, why is the free part of that education not appropriate? Because, quite frankly, I suck.

Hyacinths

Last fall, my mom bought me more bulbs than normal gardens ever plant. I love bulbs. You put them in the ground, toss some cow manure on them twice a year, and bingo! You have flowers. I don't plant many tulips, they wear out. But hyacinths and daffodils... gimme.

I got to pick the bulbs. We were in a local nursery center, and having a really bad month, and I handpicked each bulb, it was heaven. I managed to get them in teh ground, which is a miracle. And now I am SO glad I did. They are blooming today. It was a warm, sunny delight of a day, and my hyacinths came out, and coming in from class this evening, it just smelled SO wonderful. It makes being tired not so bad when the hyacinths are blooming. You can almost feel the perfume in the air, and when it is still like now, the weight of it hugs you. How can anyone be unhappy when hyacinths are blooming?

Having a misery day

I'm tired, I have a sniffle, and I'm feeling really miserable today. If life were left up to me, I'd meet the stupid school OT for coffee, slump in my chair the whole time, smile, and nod, and have this round be over. This woman is not suddenly going to understand sensory issues or deal with them appropraitely, but we have 12 more years stuck with this woman. There aren't any other choices, unless we move or sue. And Im paying too much money in therapies to afford to really sue. Unless I get a fifth job. I'm running out of hours in the day. Andy now needs 2 30-minute sessions of therapeutic listening (anyone else done that?), but that's not so bad, because I just picked times I was playing with him, anyway. Now he plays with headphones on. Only I can't cut any corners; I can't get a si of something to drink or check my email surreptiously, because he'll take the headphones off. WE actually went up a volume setting today, big big stuff apparently. He likes the songs. My garden needs a layer of spring mulch, which for us is a thick layer fo newspaper to keep the weeds down covered by a light, decorative sprinkling of hardwood shredded bark. BUt I never got to it last year. This year isn't looking good, either. I miss my garden. I'm just so tired.

What to do

So the director of Student Services had a meeting with the staff, and our IEP meeting, or whatever, and basically told the OT to get with our OT and us and "colloborate on a plan for Joey's sensory issue that we all feel comfortable with."

Sounds reasonable, doesn't it?

Except that the school OT doesn't do sensory stuff. The problem with teh plan we have right now is that leavin gher to implement it, when she is not skilled to do so, it ludicrous. How can I colloborate on a plan when the only problem with teh plan is qustionable personnel?

And sorry about the work we've already done. We're just screwed with that.

The only thing I can see to do is to move forward as we are... tracking down a lawyer and some educational specialists.

What a Day!

So yesterday was quite the adventure. It was the first beautiful Friday we've had in a while, and the kids didn't have Wee Time, so I thought ti would be good to take them somewhere. Joey wasn't feeling good Thursday, but he seemed to be recovered, so I thought Richmond and goat-petting would be an excellent destination.

We were delayed by ome phone calls- the most damaging being one of the lawyers calling to say she wasn't taking new cases, and perhaps I ought to spend my energies making sure his next IEP is "airtight." TO which I could only think, I canput all the OT goals and time in there I want, if its done by a person with an attitude and lack of skill, what good is it? But anyway...

So I packed up the guys and headed out to get some gas. I was about to right-turn-on-red when a little truck cut me off, and I had to brake. I didn't hit him. The person behind me, however, didn't stop in time, and we were bumped. It was more of an annoyance than anything else; there's a dent in my tailgate, but it still works, and no one was hurt. Andy freaked because of teh bang, but soon was giggling with his brother. WE had to wait for a policeman to show up, who was very nice, but it ate our morning.

So instead of heading down to Richmond right away, we went ot World Market and picked up a set of CHinese paints and brushes. I want to show my students how difficult Chinese ink painting really is, and there is no better way than handing them a brush, a stone, and some dry ink, and saying "go for it!" The store was a disaster waiting to happen- little kiosks of grabbables every where. Fortunately, my guys were more interested in each other, and they were perfect little angels. I was so proud of them! We decided to go get Grandma and go on to petting goats, they were so good.

Goat petting is fun. Feeding them is even better. There were peacocks on top of the chicken coop, and Joey found them all by himself- it is such a miracle to have him noticing his environment, but to really explore it to find peacocks way over his head... wow! And when they got tired, they said goodbye to the animals and came along to the car without a lick of trouble. Incredible.

So home we went, and rested for a bit while I made some spaghetti for dinner, and returned more phone calls (Kennedy Krieger, the director fo student services, another possible professional advocate, a couple of law offices). We had a nice dinner, some nice baths, and an OK bedtime (Andy was a bit of a fuss, the time change is a little bit of a mess still). My husband and I setled in for the night with our work.

About 11:30, we heard tow quick barks from Joey's room. Oh no, I thought, croup! And he came in barking, sure enough, so I got the humidifier going in the bathroom, and got settled into the steam with him whil Allan ran to get some meds for him. He had been gone... five minutes? Not ten... and Joey started to scream with every breath, "I'm broken! I'm broken!" OK, the mist isn't working, I thought, I'll get his shoes on and take him over to emergency when Allan gets back. I carried him down the stairs. I foudn the shoes. I took up Joey's foot in my hand. It was cold.

It was blue.

I ran to the door. No Allan.

I called 9-1-1. The dispatcher was very professional, and I rubbed Joey's hands and talked to him until we could hear the ambulance. He asked for Daddy, he asked for Grandma. Broken-broken-broken- all gone. He said he could hear the ambulance, and I told him they wer coming to help, help was coming, the doctor was coming. Allan arrived just as the ambulance and the fire truck did. THey put an oxygen mask on him, and he was better within a minute. The blue faded. He smiled at me, at the paramedic, and he looked for his Daddy. We told him he would get to ride in the ambulance, and he seemed happy about that, sitting up on the stretcher like a big, big boy and letting them strap him in.

I got into teh ambulance with him. He was turning slowly pink again. We were waiting for him to stabilize, and they switched to blow-by. He was giving high-fives to one ofthe paramedics. They asked him some questions, and he was answering and responding to them pretty well. Then he said, "All fixed now. Thank you. I feel better."

The ride was fun for him. He liked getting the x-rays taken. He didn't like the medicine much, but he did OK with teh mask and the all. We finally went home about 3 am. On the way home, Allan said, "Hey, Joey, Did you have fun? Want to do this again tomorrow?"

To which that silly boy replied, "oh, YES! I had fun!"

Strangeness

It is very strange to relate the same story half a dozen times, and always get the same reaction... "So... have you found a good lawyer yet?"

Relating our meeting on Wednesday, before even mentioning that we were thinking its time for a lawyer, this has been, without exception, the first comment from everyone I have spoken to.

It is very strange.

Why should people need lawyers to get what the law already says is their right? And why should it be so common to need one that whole firms do nothing else but this specific type of law? Are schools really this stupid? For the $200 grand its going to cost for one due process, they could put together a decent in-house autism program, especially in a little system like this one. But instead they pay all that money to lawyers. Or spend all that energy in divide- and-conquer, instead of using it to help kids. What planet is this, anyway?

Anybody out there know a good lawyer?

We need one licensed in Virginia. Unfortunatle, that's our update from here.

Thank you.

Having a Stimmy Week

The return of the tracking has been something of a shock for us. WE know it comes and goes, like everybody's moods, but holy crap, he's putting his eyes right to things to track them, or to watch numbers. He hasn't been this bad since school started 2 /2 years ago! It is distressing to us, because usually this means HE is stressed. The question is, why? Is he just stressed because his brain is moving forward and doing new things, or is there a real concern- like something going on at school we should know about?

While we investigate, I will say it has given us an interesting opportunity to see what supports he needs to channel these needs for stimulation. We have discovered that he will focus on video games, een if he will focus on NOTHING else. He loves Pinky DInky Doo and Oobi games through the Noggin site, the coloring pages on Mr. Roger's Neighborhood's site, and some of the counting-based games on Sesame Street. Counting and numbers are very comforting for him. WE also noticed that putting him in a rocking chair makes a difference, and having something in his hands makes a difference. IF he can sit with some playdough in his hands, he can do more. I think having the trackball mouse for the video games gives him that same kind of input, and heps him focus. And, of course, the gum...

I wouldn't really worry about him not being able to focus fully except that full-day kindergarten is coming. He won't have a choice- he has to perform the activitiy when it is presented. So we need strategies for helping him perform those tasks, and perform them on time. He'll have aenough trouble keeping up because of the processing delays, but if we can find those strategies that help him process- instead of zone out completely and process nothing- the happier he will be, because his frustration will be less.


Oh, by the way, I meet with teh Director of Student Services this morning about the school OT situation. Wish me luck, and I will keep you posted!

Therapeutic Listening

So Andy has been having some issues with noise and sound, so we signed him up for therapeutic listening. This is a program where the child listens to specially modulated sound, stimulating brain development. His first session was today.

The whole experience was overwhelming. He was in a new room, with a new person, and then she wanted to put headphones on him! Yikes! Insta-meltdown! Then she started noticing other things, and finally turned to me and said, "He really desperately needs this; but you know he has other issues, right?"

Riiiiiiight. Just what I want to hear on a Monday morning.

So we decided to just try to get him to put the earphones on this week, instead of having him listen to anything. Coming down teh road, I put them on, so he would see me wearing them; and he wanted them. So I handed then back to him... and he put them right on, and cheerfully wore them until naptime.

Riiiiiiight.

So the question is... how to control the overload? The earphones do not muffle outside sound, but I wonder if they control it some for him- so that it hits his ear at a certain angle, and if that would make a difference. I wonder if putting sound directly into his ear like this might not hurt. Yet, I can't send him to school like he is- there is no way he can focus on anythng in a classroom full of chaotic noise! Maybe sending him to a Montessori, where its usually quiet, would work better fo him than a public school. I suppose we'll have to wait it out and see. :P

A Review: Nature's New Hope

Charlottesville today. We checked out a therapy where Joey would listen to music and look at a light while lying on a table that moves. This is supposed to encourage his brain to improve his sensory integration.

The three different parts of this I have seen elsewhere. The light has to do with visual integration, but I haven't seen it in any "regular" or mainstream therapies... I hope someone will comment if they have. The table movement is for vestibular stuff, like the swings and stuff Joey does for OT. The sound is similar to therapeutic listening, which Andy starts tomorrow, and both our OT and out speech therapy folks were very happy about.

A sample session was part of the visit. He hated the table. He had to lay on his back and look at the light, but I think it made him nauseous. He preferred to sit up, but of course, that wouldn't do. But far worse, the lights had to be out. I know most autistic people prefer less light, or even dark, but Joey is really freaked by it, unless he's in his own bedroom. He hates dark. The lady tried to use the light switch as a reinforcer to encourage him to lay on his back and be still, but that made me all the more skeptical. "Do this and I'll stop torturing you" is just not what I would consider good therapy. However, he definitely was speaking better and clearer while this was all happening than I've heard from him in a while.

It costs $3000, plus the costs of being in Charlottesville for 12 days, since he would need to be there every day, twice a day.

So I would say, if you have a kid with sensory issues, and you start checking this out, I can't really say there is nothing to it at all. However, overall it seemed a little... duckish.

A Review: The Faison School

Well, I spent today in Richmond, getting a tour of the Faison School. Thought I'd share.

The Faison School has taken over an old hospital building. The younger kids have space downstairs, including the wide, still-clinical halls where they park their ride-ons and hang their bookbags. Wandering about this lower level are a variety of students, not just the younger ones, all with a one-on-one aide or therapist. There are trampolines, bean-bag chairs, train sets, and sit-and-spins. It is an ABA paradise of small rooms divided roughly into cubbies by bookshelves and cubicle-like walls and desks. In other words, if you are looking for a 12-month, full-day, $57,000 DTT program, I have found the perfect thing for your kid. And I am convinced there are people who need this, and kids who do very well with it. I am very happy for them.

However, I was very concerned about it as a program for Joey. For one, the person giving me the tour seemed amazed that Joey could ride a bicycle through a hall at high speed, and manouver through that hall without hitting any object or any person. She also seemed very impressed when he said "hello" to her on cue (I prompted him with "Say hello to Ms. Shirley, Joey!" and he said "hello" without even looking a her- something he only does with strangers). I had hoped this would not be such an impressive accomplishment for a child going into kindergarden. Not one of the children we saw there was even close to being "as functional" as Joey- the behaviors were far more random and severe. The programs we were shown were far below Joey's level. When I asked about socialization and generalization, I was told there was an hour each day when teh children worked in groups (great- with other autistic kids), and that there as plenty of opportunity for "natural interaction" and generalization in the halls. Um... the hals that still look remarkably like a hospital (or other institution). In other words, they had nothing to offer Joey but more drill. Isn;t there supposed to be more to ABA than DTT?

If you have a kid who is having a lot of trouble responding, who needs to learn how to learn and how to play, I would definitely look into Faison. The people there were very nice and polite, they seemed to care a lot about their charges, and they showed an interest in both Joey and Andy. However, if you have a kid who has moved on and needs more attention to social skills, interacting with peers, and sensory issues, well... I'm still looking. I'll keep you posted.

Mourning: To Jim Sinclair

This is responding to a well-known essay by Jim Sinclair, "Don't Mourn for Us." The essay is directed at parents of autistic children, and does much of teh smae kind of generalizing that his organization seems to be fighting. The essay can be found presently at http://web.syr.edu/~jisincla/dontmourn.htm.

When I discovered Joey was autistic, I did indeed mourn. I still get upset. I greived. I worried. You could even say, I freaked out. But I think you missed completely why I was greiving- and why I still find myself listening to "Never Surrender" and having to pull off the road. You seem to miss the battle parents are fighting for their their children.

Sure, you mourn for the "normal child" you were "supposed to have." We wanted to go to Italy and ended up in Holland. But you seem to think that is 1. a bad thing, and 2. the only thing. Autism is not happening to me. I am not autistic. But what I realized, feared, knew, and greived about, was that normal life was being threatened- for me, for my child, for my family. "Normal" families have no clue abotu IEPs, special ed administrators, and the constraints of labels and resources on the simple opportunity for your child to be independent. Normal parents assume independence is in the future of their child. I can never make that assumption again. I have to fight administrators, teachers, therapists, supervisors, doctors, insurance agents, and institution, just to allow my child the same shot at respect, independence, and freedom that normal families don't even think about. As long as their kid doesn't do something stupidly criminal, they will be free to live their lives as they choose. I am going to have to fight for that right for Joey- and if I don't do that fight RIGHT NOW, he will not have that opportunity- ever. If I ever STOP fighting- if we ever surrender to this insane, ignorant system that is supposed to be helping, but is instead trying in all ways to hinder us- our default is that he will NOT be free. He will be stuck in some institution, with people who don't care dictating his every move, every minute, every breath. This is not a reason to be upset?

I'm not worried about the child I was SUPPOSED TO have. I'm scared and fighting hard enough for the child I DO have- the wonderful, beautiful, intelligent, sweetling little guy who is my Joey, and his darling, intelligent, handsome, lickable brother, Andy, even though Andy does not have autism. These are my boys. My job is to help and support them, so they can be healthy, happy, educated adults. I'm the mom here.

The whole "autistic person/person with autism" thing is just plain idiotic, and I wish people would stop playing semantics. The hole high/low functioning thing is equally stupid. People with autism are autistic. "HIgh functioning" and "low functioning" is a guide to hich services these people may need, not whether or not they need them. My kid needs service as much as any head-banging, non-verbal, wheelchair-bound person; he just needs DIFFERENT services, because he has different issues and disabilities. He may OR MAY NOT require MORE or less service. Just because my kid doesn't need a helmet doesn;t mean he doesn't need accommodations in order to function and care for himself. This should be a battle to get everyone what they need, not fighting each other for slices of an ever-shrinking pie.

When I look at Joey, I have no need to say this is not some other child. I noticed that, oh, five years ago. Does that mean I can't be worried about him, I'm not supposed to try to help him function and be independent in the world? Because that is the signal you are sending- especially to my school admin. They take up essays like this and say, "see? these people don't want services. They WANT to be autistic, just as they are. They don't want to be independent, employed, or functional- they think it torture!"

Joey is NOT an alien child who landed in my life by accident. He is a human being, and he is my son, just as much as Andy is a human being, and my son. This is NOT an alien world. We are human beings on planet earth. We just need to know how to help him understand this world, just as we help Andy understand this world. And it takes Joey a little more time to process information. He IS my own kind- he is a human being, just like I am. He just needs different help, different support, different teaching methods than what I needed, or what Andy may need. He is not an "it." Joey is MY SON.

IEPs are like Indian Trains

Dealing with school personnel is like trying to change your reservation on a first-class coach in India.

When I was India, I was scheduled to stop in Bodhgaya. I had made my reservation some months before, when putting together my trip, and had no idea the monsoon would be late, and that it would be unusually fierce, and that the entire region would be flooded. So I decided it woul dbe safer just to continue through to Varanasi, and skip the water-logged city. According to my literature, the thing to do was to go to the India Rail office in Calcutta, change the reservation, and then all would be well, since I had an Indrail Pass- a fancy ticket that allows you to ride any Indian train for free, because you paid more money for it than most Indians make in a year. It is a very common way for westerners to get around.

So I obediently trekked over to the India Rail office, stood patiently in line for two hours, and finally got in to see the folks who deal with reservations, and calmly and politely explained that I no longer wanted to get off the train at Bodhgaya; I wanted to go through to Varanasi, and needed to change my reservation. I was promptly told that since I had an IndRail Pass, I just needed to tell the conductor that I no longer wished to stop at Bodhgaya, but that I wanted to continue to Varanasi. No problem.

So a few days later, in the pouring rain, I boarded the train and when the conductor came to check my ticket, I told him I no longer wished to get off the train at Bodhgaya, I wanted to continue to Varanasi. The conductor frowned, shook his head, and said since my reservation was only to Bodhgaya, I had to get off at Bodhgaya. He had no room for me beyond that.

I told him what the people in the office said. I showed him the little book that cam ewith the IndRail Pass that said I could go anywhere with the ticket. I offered to take a "seat" in second class (that's the art of the train most folks think of, with the people hanging out the doors and windows). But no, I my reservation was for Bodhgaya, I had to get off at Bodhgaya. Knowing that it was now very, very dangerous to get off at Bodhgaya (riots had started there in the days between my trip to the India Rail Office and the day I set foot on the train), I knew I couldn't budge; I had to be found a seat. I had to yell, cry, and raise a general fuss. I stomped my feet, told him he would need to be calling the police in Bodhgaya to get me off that train. I wasn't getting off. I had an IndRail Pass, and I was going to Varanasi, and had been told it was not only possible, but that this was the right way to do it, and I wasn't going to leave the train, if I had to stand the extra four hours to Varanasi in the aisle, or even the bathroom (and if you've ever seen a bathroom on an India Rail train, you know how ugly this got.) In teh end, he found me a seat on another car shortly before the train was to pull in to Bodhgaya.

That's when I realized that the peoplein Calcutta had counted on me doing exactly what I had done- throw a tantrum. They didn't have to do any actual work, and the western woman would scream and stomp until she got her way anyway, so why bother?

Unless you scream, yell, and threaten legal action, the school doesn't care. They don't even try to sound like they care. The OT was very clear: she is only legaly obligated to provide "educational service." The fact that I was asking for "educational service" be damned; she was only required to provide so much service, and by God, that was all she was going to provide. So now I am in the middle of having to have a tantrum, so that my Joey will get the service he needs.

I hate throwing tantrums. It would be so much nicer if IEP teams did what they were supposed to do- determine what a child needs. That it what the IEP meeting is supposed to do- not to ask if there is funding available, but to determine what is needed. But that is never what happens. Instead, if any money needs to be spent, it is "out of the scope of an IEP" or they start talking about medical rather than educational service. Like they aren't providing medical service... but it's irrelevant, because I am asking for educational service.

AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA!!!!!!!!!!!!

From the depths of post-IEP hell

Something for my admins to read:

http://www.danasview.net/where.htm

Mr. Rogers

Toss out the fad parenting books. Dump those "raising your kids better than your mom raised you" idiots. What has been the most helpful for me raising my guys?

Mr. Rogers.

We have the glories of TiVO. My husband insisted on it. Not being a TV fan, I didn't really care- now I'm a very happy peson. I have taken to having Mr. Rogers going while Joey is in therapy. It is not only incredibly calming, but a wonderful way to get language to use for talking to your kids. We talk all the time about giving Joey language to use. I think we forget that, not having raised kids before, we need language, too. Here is a wealth of language- talking about making things, and emotions, and people, and all sorts of stuff that is important to kids just Joey's age.

One thing about faddy books, they don't work for kids with autism. Fad "discipline" and the latest modes for getting kids to do what the parents want them to do just aren't very helpful for a child who is on the edge of not even hearing you. Timeouts make no sense. Bargains have no meaning. With Mr. Rogers, you have positive and proactive ways of helping a child, because Mr. Rogers always keeps in mind that children are people. Behaviors have reasons. A child isn't screaming or crying just to annoy you. Here is a whole daily program about considering what a child's world looks like, feels like, how it works and doesn' work, and how to talk about what is happening- in simple, clear language, just like you need for an autistic child, or any child.

What would Mr. Rogers say about raising a disabled child? "Well... he's still a child, right?"

Just another day

Our preschool teacher found out I got Joey's file copied, and now has the letter saying I am going to taperecord the Wednesday meeting. She freaked out. I had to tell her there was nothing she could do. It was a much harder conversation than Wednesday is going to be. On Wednesday, I am going to go in and make sure my child's rights to live, to develop, to learn, to have the opportunity at independence, to have his feelings considered, and to be human will be respected. This was telling someone else that they couldn't avoid a conversation they hoped to avoid.

The girls left the workroom a mess again. I don't know why they can't take two minutes to put the games back in the box, the crayons back in the drawer, the notebook back on the table... but it seems to be some great challenge of the age. And apparently I have to do my own graphs.

And Joey has returned to spinning cars. I always worry about working him too hard. Today, he just had a nice, quiet day playing with Mom and Brother. And spinning his cars. BUt we all need some days like that.

Sunday School

I just noticed that I forgot to follow-up about the Sunday School meeting. Since it feeds into our war against the OT, I thought I'd just let you all know what happened there.

We had our meeting, and really talked about some of the issues they were having with Joey. These folks are not special ed trained, and the teachers aren't even education trained- they're Sunday School teachers, and have been for a while. Autism is not something they usually deal with. To them, he needs to act like everybody else, or at least do what everyone else does. The director was very helpful, having been in teh Stafford schools and having at least some exposure to the challenges and accommodations of autistic children. She could translate. ;)

I let them know I would have something of an answer by the time Sunday rolled around again. So the next Sunday I walked in, and told them about teh gum, and brought his vibrator. Before I even got the pack of gum out of my pocket, the one teacher had a peice in his mouth, and the other was thanking me. I was shoo-ed away. I returned to find he had earned a lollipop like everyone else. They had someone put a hand on his shoulder during storytime, and had also given him a stuffed animal to hold, so that they had the vibrator in reserve. Bingo. Earned a lollipop.

Compare that to an OT that has fought tooth and nail against even trying the gum for almost four weeks now.

Reports from the Front

I keep telling myself this was all just a big misunderstanding, that this OT wasn't really saying Joey should have a chew toy instead of gum, this was all just a silly word-problem.

Nope. She's serious.

And so the big battle is scheduled for Feb 28: the IEP meeting.

I tried to get this settled before the IEP, but apparently she had better things to do and everyone else's kid was more important than mine, and she just couldn't fit me into her schedule. So instead of quietly settling the matter, we're going to settle it loud and clear, and in front of her colleagues. Yuck.

The discussion between her and my private OT has been terrifyingly illuminating. She really does think putting fingers to a child's throat is "more subtle" than giving them a peice of chewing gum. Really. She didn't understand the importance of sensory integration interventions to an autistic child. In fact, for a women outing herself as a professional OT and advertising her work with the new autism resource room- one of the reasons she couldn't meet- you'd think she'd have some inkling about the sensory integration issues of autistic children, and approparite, functional interventions and accommodations. Every time I think about her in there with other autistic children, I get more and more concerned. They need someone in there supporting them- especially an OT- not someone torturing them!

So Wednesday is the big day. Everybody, please hope hard.

Declaration of War

My private OT and I have managed to put together a simple sensory diet for Joey. For those of you not familiar with sensory diet, this is a series of strategies to deal with Joey's sensory integration issues. Joey has been displaying some disruptive behaviors lately- clicking, scripting, etc. If you give him a peice of gum, it stops; he gets the oral sensory input he needs. Seems simple, yes?

Apparently not.

The note I got back from the school OT was that she finds it effective to put her fingers on his throat and tell him "stop."Will he swallow the gum? What will they tell the other children about the gum? And they don't allow gum in regular classrooms.

Hello?

I doubt this woman wants to run after my son all day with her fingers on his throat, so the intervention she is recommending is not functional. Swallowing gum is not fatal. What do they tell children about other people's needs- such as chocolate for a diabetic, or special lunches for children with allergies? And what do I care what they allow in "regular classrooms"? For one, he isn't in one, and for two, inclusion classrooms should have no toruble accomodating such a simple strategy! What the HELL???

So I called the teacher. That went OK. She seemed to at least understand I was trying to help- I hope. BUt to have an OT so completely ignorant of sensory integration issues and interventions... where is the support for his teacher in these strategies?

So I called the special ed supervisor. I am hoping he will help. If not, I will have to go to the director. Allan has HAD it with this OT- this is the THIRD run-in with this person. In fact, this blog was started as a way to deal with frustrations from this lady. We're through. If she were a private OT, she'd be fired.

Commentary: Bumper Stickers

There was once a Peanuts cartoon that said, "A bumper sticker is not a philosophy." However, there are an awful lot of autism bumper stickers swirling around now. I thought I'd share some thoughts about them.

1. The Puzzle Ribbon. The Puzzle ribbon is starting to be problematic. Many autistic adults are asserting that they do not want to be a "puzzle to be solved." That seems to miss the point, but perhaps that's just my own interpretation of the puzzle peice motif. We are all puzzles. The Autistic Puzzle is multi-colored because of the idea of "spectrum." However, as most know, puzzles with peices that are so different can either be a peice of cake to put together- or terribly, terribly hard. Getting life to come together for an autistic person can be far more of a challenge than with a "neurotypical" person. It is also extremely recognizable, so I hope we keep it.

2. "This is a cat. It is not a defective dog. It is very happy being a cat." I like this idea, but it is a little off. The point is that an autistic person is not a defective neurotypical person. I'm good with that. However, we live in a world run by dogs, designed for dogs, and where the primary way of getting what one needs is by wagging your tail when you are happy, and growling when you are upset. If you wag when you are upset, and growl/purr when you are happy, you probably are not going to get any milk in this world. I like the idea of not needing to be "cured" or made into a dog, though.

3. "Autism: It's not like you think." Love it. Have one to put on my bumper as soon as spring arrives.

4. "If at first you don't succeed, perserverate." Although I understand the humor in this, I am not sure the giggle at one of real issues of autism is something I want spread around. This is only good for meetings with ASD people and parents. Ditto for "It's a Stimmy Day."

5. "I'm not a brat. I have autism!" Joey's original preschool teacher, Miss Angie, once noted about Joey's unusual behaviors: " It really doesn't matter why he is doing these things. IF a behavior is unacceptable, it;s unacceptable, and needs to be changed." I will return to the story of the Mom Afraid of the Mouse, where she's standing, screaming int eh kitchen, waving a knife around. The story was told on the blog I got it from to demonstrate how behaviors seen as "unacceptable" in autistic people are seen as "acceptable" with neurotypical people. However, I must say that I disagree. The mom screaming over a mouse in the kitchen is still unacceptable behavior. That's why we find it funny. Here is a normally acceptable human being acting in a strange and unacceptable way. She really needs to learn not to freak out when a mouse scampers over her floor.
On the other hand, I do get weary of people coming up to me in stores and telling me to discipline my kid, or give me dirty looks if he happens to squeal, or get excited, or perserverate. Its like asking a parent to tell their wheel-chair bound kid to just get up and walk already. I can't imagine being a parent of a child who really loses it in stores, and dealing with people while trying to deal with a real meltdown. Sheesh, people, mind your own business. Even parents of brats are probably doing the best they can.

6. "Yes, my son has autism. No, he's not like Rainman." I'd like to have a set od business-size cards that say this. It would save time.

7. "Always Unique Totally Interesting Sometimes Mysterious." I know some autistic adults don't like the "mysterious" part of this, but I think I'd like to wear this t-shirt without the first letters lined up. Its perfect.

8. "Fair is not everyone getting the same thing, or what they want. Fair is when each student gets what they need." I wish every single person who worked in education really understood this. Our school OT effectively denied us summer services last year by saying that the school system couldn't do more for Joey than for the normal kids. I'm cool with that. But I thought that teh point was the school was giving each kid a fair shot at being an independant, socially responsible human being. They don't all make it. So... why doesn't my kid get to have this opportunity?

9. "What? Is my autism showing?" See #4 and #5.

10. "I'm just like everyone else... only different." We should all have this on our bumpers.

11. "If 1 in 166 children in this country were being kidnapped, we;d have a national emergency. We do. Autism." Ok, this one kinda gets my craw. I don't like the idea of comparing Joey to a child who has been kidnapped. Now, I'll say that when we started, we were definitely "losing" Joey. On the other hand, autism is not being "kidnapped." Joey is Joey. He has autism. We can manage to teach him to get along in a non-autistic world, but he is who he is. However, I think the point of the emergency is very much pertinent. Kids who need to get along in the world need services, they need help, they need attention. Most of them are not getting it, and many are beign actively denied due to ignorance and inaction. It is shameful. If 1 in 166 kids were being born with cerebral palsy, you bet someone would be getting off their butt and making things move and shake.

12. "Welcome to Holland. Come on, I'll show you around." This is great for therapists and parents who know the ropes and have moved past the grieving and the shock and come to the realization that this isn't the end of the world. Just the end of the world as you thought it ought to have been.

13. "Autism is a difference, not a disease." Dont show this one to your insurance company.

14." My communication skills are fine. It's not my fault you don't speak my language." Excuse me? We're not trying to speak English while in Holland here. These kids need to be supported and communicate functionally. Discouraging services is not the answer.

15. "Stop trying to fix me. I'm not broken." Then you don't need a personal assistant. I understand this one should be filed under the "this is a cat" and other anti-cure slogans, but this one really rubs me wrong. Its one of those suggestions that these people do not need help and support, do not need therapy, do not need special education. I know it is probably intended to move away from looking for a pill or a shot or a diet to "cure" the autism, but the tone comes across really, really wrong to me. Joey is not currently able to function in a regular environment at an independent level. Therefore, I need to do something.

16. "The next person who says autism is like a trip to Holland gets a mouthful of wooden shoe." Excuse me, but whoever wote this did not read the peice. It is not about being autistic. It is about being a parent of a disabled child, when all your friends have normal kids. It's about sitting in a room full of moms talking about how they just had a sleepover with 15 kids at their house, when my kid hasn't yet made a friend. Its about parents telling you about their kids' first word when your kid is deaf, or their first step when your kid is confined to a wheelchair. It's about the playdates you aren't invited to, the schools your kid can't go to, the life events your kid may never have. It's also about the miracle of Joey's first time coming up the stairs from having ABA and calling me "Mommy." The joy of watching Joey touch a drum. The absolute shock of having him turn to me and say, "I like the music!" It's about moving beyond shock, anger, fear, disappointment, and grief, and living the life you have rather than the one you thought you ought to have had, or the one everyone else seems to be having. It's about supporting the child and accepting the child as s/he is, and not trying to get that child to be a person you thought s/he should have been. It's about coming to terms with what society deems "normal", and what you actually have, and realizing that you have a treasure, too.
So I hate this sticker. It just communicates to me people who are too wrapped up int themselves to understand that raising an autistic child (or any disabled child) is not like raising a "typical" one, and it can be frustrating, isolating, and frightening, and parents need some support and understanding, too. It looks to me like the reaction of a spoiled rotten brat to something that doesn't even pertain to them. It dismisses the sacrifices parents make to raise and care for their autistic children- often well into adulthood.

17. "My kid has autism, alright? Now get out of my way!" I don't get this one. Somehow, not understanding this makes me feel better. Obviously this is a problem I have not had to face.

18. "Spock was not Vulcan. He was autistic, with pointy ears." I always remember the beginning of the Star Trek movie where the re-generated Spock is regaining memories and the computer is testing him. He is answering questions at a frantic pace without breaking a sweat, when it asks him, "How do you feel?" He can't answer the question. His human mother has to explain to him that the computer knows he is half-human, and so has emotions, even though he has been trained in the Vulcan way. This is important. Don't just train your autistic children to respond to academic skills. They also need social skills, need to be able to understnad emotion, need to be able to connect to the world. Education professionals often forget this, since their screening paperwork doesn't account for it.

19. "We all have challeneges. What makes you 'special'"? Another one that should be on every bumper.

20. "Autism is a disorder, not a disease." I like this one because it concedes that autism is not normal, and requires services and support, while turning aside the "cure" thing. My child is not just "different." Joey is currently disabled. He cannot be cured, but he can be helped.

21. "Inclusion works when teachers believe all children can learn." Teaching is a tough job- when it is done right. Keeping track of all those learning styles and needs- wow! Unfortunately, most classrooms are not set up for inclusion. Either you get it the way the teacher hands it out today, or you're screwed.

22. "My kid was poisoed by mercury in vaccines, but everyone calls it autism." I'd like to make a sticker that reads, "My kid was NOT poisoned by vaccines. He's still autistic. Now what?"

23. "Oops. Wrong Planet." I giggle at this one, because it's another one I think I ought to be wearing myself.

24. "When life gives you lemons... you'd better not be talking about your kid that way." I am sure this is a reference to some essay on accepting being a parent of a disabled child, but I have no idea what essay. However, I definitely have to agree- my life may not be "as expected", but Joey ain't a lemon.

25. "I am not a puzzle, I am a person." We're all puzzles. We're all people, too.

Playing with the band

Joey loves music. Mom got him some drumsticks, and he's been going crazy (in a good way). He seems to have an OK sense of beat and time. I took him over to the church this evening. They have a casual contemporary service on Saturday nights, with a little band. When I took him last week to be baptized (long story), he really loved the music. He danced in the aisles, strumming his tummy liek a guitar or pretending to drum, and impressed everyone when they stopped and he'd say "Very good!" Then the band leader started ending songs with "Amen!" so Joey started saying "Amen!" as soon as a song ended. Everyone thought that was incredibly cute. Well, its a church after all. What's cuter than a four-year-old enjoying being at church and joining into "Amen" at the end of a song?

Anyway, he loved it so much I took him tonight. We sat up in the front pew so he could get a good long look at the instruments, and one of the percussionists came over and started handing him instruments to play, like shakers and spoonsets. Joey was THRILLED. He did a really nice job, especially with the spoons. I haven't seen him that happy in ages!

So often when people interact with Joey, and start to get the clue that something is not-quite-right, we get a curious reaction- usually something akin to a dirty look, or a scowl, or a pushing-away that is really very hurtful. It was just nice to see people react to Joey in a way that appreciated who he is, and welcomed him. Nobody there wanted to try to change him, or ask him to be quiet, or stop him from being a four-year-old in love with music. Yes, that band has a new #1 fan.

Me.

Snow! Snow! Snow!

Well, we finally got some. The boys are thrilled. They also have discovered that mom doesn't need to be mother-henning them all the time, all the time- it can be fun to be outside in the snow, with no mom (especially if mom is baking cookies for when boys get too cold and wet to stay outside!) It was very strange to be in teh house by myself for a whole twenty minutes. I spent most it looking out the door making sure the guys were safe.

Sunday school is getting interesting. The lady who runs the preschool wants to put together a little plan for dealing with Joey. I tried sending in a letter- especially since the Sunday school teachers insist on shoo-ing me out the door- but in bad weeks (and we've benhaving a really bad week), tey need to actually READ that letter. :P I'm glad to have a meeting this Sunday, because then no one has to read, they'll be informed (with a witness).

Really, if Joey could just have an attendant, he could go anywhere and be in a regular class. No-one will do that, though- "he's in too good a shape."

I have added a link to the list, to an article called "Welome to Holland." It's been circulaing enough that some folks might find it trite. I noticed some autistic adults are upset by it, by I want to note that it is about being a PARENT of a disabled child, not actually BEING a disabled person (though I'm not sure why it wouldn't apply- it's about thinking life is going to be one way, and having it turn out another way- not better, or worse, but different than expected or intended).

Reasons

We've been having a bit of a bad week. Nothing particular has happened, but Joey has been tracking, scripting, and otherwise showing us he is having trouble. It would be nice if there was one stress we could point to and fix, but I doubt its that simple. Back to school, new stuff at school, maybe a growth spurt, the unusual weather and weather swings, normal growing-up type stuff...

It reminds me of a story of a woman in the kitchen on the table, screaming. You enter the room, and she's screaming, heedless of all else, knife in hand, clearly irrational. What do you do?

Find the mouse, of course.

One thing I learned when Joey was a baby, he doesn't scream without a reason. He doesn't take a backslide with no reason. I just can't always determine the reason. It must be horribly frustratng for him, because it's frustrating for me! What would that poor lady on the table do if we didn't know she was afraid of mice?

So we're having a frustrating week. I know a lot of "adult austistic" sites that get all worked up about trying to stop things like tracking and scripting, but they really do get in Joey's way. If Andy started, say, playing videogames at all hours and not doign his homework, I wouldn't think twice about shutting off the xbox. If a typical child doodles on his test paper instead of answering the questions, we reprimand them. So why would I be berated for moving Joey away from tracking and scripting, and back to the task at hand?

Hoarding

Joey has come through the holidays pretty well, all things considered. He had a great time yesterday with the Perrygos, playing with his cousins. He was fascinated by the water and the docks- we'll try to take him in teh summer when he can go on the boat.

Andy has been more of a problem. He totally loses it in noise. When teh presents started being passed out and opened, he melted down. He;s also hoarding- toys, food, anything he can put his hands on. It's insane. Its like he's even hoarding us- if no=one is near, he calls. He won't sleep or nap without a huge struggle, calling us back again and again. Sittign with him doesn't help. His bed gets heaped with stuff, and he's lost in a sea of stuffed animals. I don't know what I am doing wrong that he feels so insecure, but we have to find a way to help him. We just have to.

Christmas Has Come!

Well, we survived! Joey has actually one quite well this year with teh activities and festivities. Andy has had a harder time. We managed to get some professional photos taken- despite Andy's best efforts- but we didn't get them onto Santa's lap. Joey saw Santa t school, so that was good enough for this year. I also had some helpful, helpful boys to put up the Christmas tree. We just put on the plastic ornaments and the stuff we had them make this year. That way, i didn't have to worry about breakage (I'm not so much worried about the ornaments, as that it is hard to get these guys to not touch stuff, and I was afraid of cuts).

Santa came and left the guys TONS of stuff. So I thought I'd offer some toy reviews.

T.J. Bearytales is a hit with both guys. The bear catches interest even before it moves, the stories seem to be gentle and fairly simple without being simplistic. It takes 4 D batteries, and there is space in teh backpack for 4 extra cartridges (it comes pre-programmed with a story, no cartridge needed- so strage for up to 5 stories!) and I recommend getting some, because otherwise you're going to hear the same story over and over and over and over again. Great toy. I hope it holds up, I'll keep you all posted.

Hyper-Rides Snake River Raceway was a big hit. I wish it stayed together better, but Joey adores it and Andy will run and fetch the cars to have Joey run it. It was also inexpensive. If you need bang for your buck, this works very well, and was easy to assemble No batteries required.

Fisher-Price Spiral Speedway- another hit. This comes with batteries, and needs its own cars to work well, so keep track of them. Hotwheels cars don't fit well, they are too wide and heavy. However, the guys really love it, and Andy likes to try to hoard it.

MegaBlocks Wizard of Oz Playset- we weren't sure about this one, though I bought it because I thought it too funny. the guys like the music and flashing lights, but the music is not from the movie at all. Also, teh witch is blue, not green. However, the boys like it a lot.

MB Hungry Hungry Hippos. Mom bought this for the guys in some kind of special two-games-for-one-price deal from Hasbro. It is not the game I remember. Its small, only for two players, and the balls don't bounce around well. Not a hit.

Hi-ho Cherry-o is the hit it always is for preschoolers. Joey and I just played it for over an hour, so he practiced counting, taking turns, and following rules. Very fun. Much more fun than I remembered.

TMX Elmo. Well, I must admit, its a cute toy, The guys love it. Its a lot of fun. Why do people try to kill each other for this thing, or pay hundreds of dollars for it? $40 is about right, considering the Bearytales was a little more than that. However, I think $20 is about what these toys ought to be. They are cute. The boys like them, They are not the end-all be-all.

Megablocks truck carrier playset. This toy includes trucks that come apart into smaller "blocks". It would have been fun except for the 15 wire ties holding it together. It took my husband and I an hour just to get the toy un-packaged enough for hte boys to play with it.


So it was a fun Christmas morning. The guys are enjoying their new toys, while watching Little Bear and hearing new stories (mostly Little Bear as well). Merry Christmas!

Prepping for Santa

Yes, it's that time again... time to prepare for the Great Red-Suited One. I've been reading The Night Before Christmas to the guys, trying to get them used to the idea. Andy seems interested, but he's more into the Christmas carols. Joey likes Santa, but I don't think he gets the story at all. Oh well.

I went over to the elementary school yesterday to check out the kindergarden. There is a classroom that is kind of halfway between the self-contained classroom and the full inclusion classroom. It is run by a special ed teacher, has a kind of aide (but not a paraprofessional), and has only 8 students in it. The inclusion class sometimes comes in for lessons, like social studies; and they join the inclusion room for "specials" like art and music. It seems like a good idea, but they are still doing things Joey can't do, like sit in large groups on the floor and pay attention to a book. I go see Joey's program tomorrow, so I'll get to talk to Kaila then. He needs to be able to participate independently in large group activities, and have some other "independence encouragement" going on.

Now if only I can get them all healthy for Christmas...