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...

Commentary: 8 Myths of Julie Krasnow

Once again, I am here to rant about another Autism List that I see bouncing about a lot, and which I find problematic. Here it is:


Dispelling Myths of Autism
Indianapolis Star
Begin to help autistic children by dispelling myths
By Julie Krasnow

The word “autism” has become a more common term recently, due in large part
to the Autism Society of America reporting that autism now affects one in
166 children.

If you don’t know someone with autism, you probably will someday. April is National Autism Awareness Month. As the autism/behavior specialist for the Carmel Clay Schools, my job is to educate others about this disability. Without proper knowledge, many people afflicted with autism often are misunderstood.

I would like to share and resolve some misconceptions and myths to help raise awareness in our community.

Myth No. 1: Autism is caused by “refrigerator mothers.”

Many years ago, Dr. Bruno Bettelheim claimed that autism had a psychological causation: that the mothers of these children, intentionally or otherwise, did not love their children. The term “refrigerator mother” was born, referring to the fact that the mother was cold toward her child. Today we know that autism is a bioneurological disorder that affects the functioning of the brain. Some theories suggest that it may be genetic, viral or caused by chemical exposure.


Commentary:
This idea is still more common than I would like. However, I would also like to file under this kind of ignorance the people who walk up to me in stores and tell me to discipline my child (and Joey isn't too bad in store, he likes them), people who ask us to leave resteraunts, and people who seem to blame us for Joey's quirks by proclaiming us "bad parents" either overtly or covertly.

I also would like to point out that many autistic adults seem to have a similar view of parents, by ignoring the sacrifices made by parents in trying to help them become independent, socially accepted (or acceptable) adults. You may not agree with how your parents raised you- but that just makes you human. To discount the effort to care for an autistic child and to raise an autistic child, we stand accused of being selfish and uncaring. Just wait until you have kids- which you wouldn't, if we didn't put forth extraordinary effort to help you learn to form and maintain relationships.


Myth No. 2: Autistic children show no emotion.

A common misconception is that children with autism are unloving and do not have any emotional feelings. On the surface, this may seem to be the case because they don’t always express their emotions in a way that you and I recognize. But for those of us who know a child with autism, we are aware of the ways that they show love and affection.


Commentary: My doctor was shocked when we first came back with a diagnosis of autism. The reaction? "But he's such a happy, loving child!" Yes, he is. I'd like to keep him happy and loving, thanks. (Our doctor has been extremely supportive, and interested in learning from Joey's case, by the way- and we're all for that!)



Myth No. 3: Children just need a good spanking

We’ve all been out to a grocery store or running errands when we come across a child throwing a temper tantrum, including screaming, throwing and hitting. We may wonder why parents are letting their child do this without any discipline or reprimands. If this is a child with autism, he most likely has lost control because of sensory overload. The sounds and visual stimulation and the overwhelming crowds are just too much for this child to take in, which results in a meltdown. Parents are unrightfully blamed for not disciplining their children.


Commentary: Yes, and we're awful parents, so what's our problem? Returning to those people who come up to me in the store and tell me about my kid: who the hell are you?

At the same time, I would like to take a moment to mention the folks who come up to me in that same store and tell me what beautiful children I have, even though Andy turns his head away and Joey giggles and asks them something strange. Thank you. Its lovely to know we're giving someone else pleasure, and I hope you enjoy my children as they are.


Myth No. 4: You’re born with autism.

On average, autism is diagnosed at 44 months of age.


Commentary: Joey was born with autism. The time of diagnosis is not the moment you start being autistic. However, autism can be triggered. This note seems to say children are not born with autism; they are. However, there are also children who were neuro-typical, and then have autism triggered by an event- and not always a clear, overnight event.



Myth No. 5: Vaccines do not cause autism.

The jury is still out on this one. Although a recent Institute of Medicine report appears to refute an association between vaccines and autism, the major autism organizations all agree that more research needs to be conducted. A recent study suggests that children receiving vaccines containing the preservative thimerosal are many times more likely to develop autism than those who receive thimerosal-free vaccines.


Commetnary: Joey received thimerosal-free vaccines. He's still autistic. However, I cannot discount that vaccines can be triggers. Vaccines place the body under stress, and stress can trigger autism. However, mumps, measles, rubella, whooping cough, hepatitis, chicken pox, pneumonia, flu, diptheria, tetanus, etc. also put the body under stress, and can trigger autism. On top of that, they can kill you. I recommend vaccination, though we put off the MMR a bit to make sure Joey and Andy had strong immune systems to handle it. I think the MMR is usually 18 months, we waited until 24. Andy is fine. Joey was already not fine.



Myth No. 6: Dustin Hoffman’s character in “Rain Man” is typical of a person
with autism.

The character in “Rain Man” was a high-functioning person with autism and also was a savant. In reality, only 2 percent of those diagnosed exhibit such savant capabilities.


Commentary: If "Rain Man" is a high-functioning autistic person, then I can't really blame people who want to "cure" it. I would consider "Rain Man" to be a medium-functioning person, not a high-functioning person. His savant abilities were not typical. Unfortunately, his social skill and functioning level is pretty middle-of-the-road. He was verbal, but unable to live independently or function in society. With the current understanding of autism and therapies for helping these children learn, we are all hoping to have people with autism be able to be less disabled than Rain Man.



Myth No. 7: The increase in the rate of autism is due to better diagnosing.

Ten years ago, the rate of autism was 1 in 10,000 births. Today it is 1 in 166. This is a 5,000 percent increase in 10 years. If this astonishing increase is due to better diagnosing, where are the thousands of autistic adults who should have received a diagnosis 10, 20 or 30 years ago?


Commentary: There is better diagnosing. There is also better treatment. However, I have the same question. I know autistic adults. But I know far more autistic children. Where are the ASD adults? Where is even the rumor of them? In my neighborhood, there are 3 autistic kids that I know of. However, in my wide range of contacts, friends, acquaintences, etc., I have only one person I know has an ASD, and not even a whisper of anyone, a sibling, a cousin, an aunt, uncle, etc., with ASD, Einstein Syndrome, or other problems that could indicate ASD. Why?

So I don;t think it is all better diagnosing. There really is a problem here, and it would be nice to figure out why were are seeing such a dramatic increase in ASD people.


Myth No. 8: Autism is a rare disorder.

With 1 in 166 children being diagnosed with autism, it can no longer be called rare. We have an epidemic on our hands. Every 16 minutes, another child is diagnosed with autism. For all of us who have had the privilege of knowing, loving or working with a child with autism, we are able to see their abilities through the disability and appreciate the child within. I am pleased to report to the community that my Carmel Clay colleagues and I are working very hard to provide the best education we can for students who have been diagnosed with autism.

Commentary: Autism was rare. Now it is not. There is a .5% chance that your next baby will be autistic.
About 2.2% of children 0-2 are disabled.
The chances of infant mortality is 7 in 1000 births, or .07%.
The chances of a preterm baby is 1 in 8, or 12%.
The chances of a multiple birth is about 3.4%.
The chances of Down Syndrome is 1 in 733. That's a .013% chance.



If you would like more information, please e-mail jkrasnow@ccs.k12.in.us or
call (317) 846-3086, ext. 1247.

"Cure"

There's a funny word that bounces around the autism community: cure.

Its a funny word, because people get very, very upset about it. There is a whole subculture of sites and groups, mostly of parents, who want a cure. They want their children to be cured of their autism.

Then there are the sites from people who are autistic. Guess what? They don't want to be cured.

At first, I thought this was just a semantics game. I am, in part, correct. When I talk about getting Joey services, helping him to communicate, helping him learn to relate to other people, and heloing him exercise dynamic intelligence (the ability to deal with spontaneous and changing situations and environments), I am targeting core deficiencies that make autism disabling. I do not want my son to be disabled. That is my goal. I know we may never reach it, but that is where I am going in managing the condition.

Even "managing the condition" ruffles feathers. However, when words like "cure", "managing", and "mainstreaming" become problematic, you are having more of a problem of semantics than anything else. I am trying to help Joey, so he can fully enjoy living and enjoy his talents. I am doing this for Andy, too. That is what parents do.

Then I come across the two extremes of the spectrum on this issue.

On are the parents who really do want to "cure" their kid. They want to have a pill or a shot or a diet or a therapy that will make their kid normal. This is based on the idea that autism is a disease, the kid is sick, and if we only knew the right thing to do, it would go away. I certainly understand this feeling. Many of the sites from autistic people seem to completely disregard the effort put forth by parents, the pain they endure, the realization that your child may be disabled forever and unable to fully enjoy life. That will put some of these people off-joint, but there it is. A blind person will never be able to see. They may be perfectly happy, and enjoy their world, and have a useful, independent, joyous life. But I know what a treasure sight is, and would still wish my blind kid could see, and do everything I could to try to share that treasure with them. That is the impulse of most parents I know.

However, there are those parents that simply want a normal kid, rather than the kid they have. I wouldn't have believed this, but I have seen it too often now. So few of the special ed parents get involved, or even try to deal. They toss the kid at teh school at first opportunity, and that's it. They don't want to even look at the child. It's heartbreaking to me. When I compare that attitude to my friend Christina, who has three severely disabled boys and just loves them to peices and does everything she can to help them enjoy living, I just wonder what people are thinking. Those boys bring joy to her life, and she enjoys them, and lets them be who they are, and helps them to enjoy the world around them. We can wish they were not disabled, that they could talk, that they could walk, that they could live healthy, independent lives; but we also love them for who they are. They are not these disabilities.

Joey is not his autism. Joey is Joey. Why he does what he does is only important in that it gives me clues on how to help him, how to teach him, how to communicate with him. It actually gives me information about how he is perceiving the world around him, so that I can help him make sense of the world-- exactly as I am helping Andy make sense of his world.

Which brings me to the other end of the spectrum, the autistic folks who get all fired up and angry about people wanting to cure autism. I can see this side of the coin, too. Who wants to be told all their life that they are doing stuff wrong, that they are less than what was expected, that they can't do, can't be, can't please? The problem here is that by their arguments, we should do nothing. They will vehemently deny this, note that people with autism need support throughout life, that services for autistic adults is woefully absent, and that they are not saying that we shouldn't help. However, they then go to contradict this apologetic. It is very hard to say you don't want to be pushed to act like a normal person, and then wonder why no one will give you any services. Services are intended to help you function in a world of people that are not autistic. I am esepcially offended by autistic adults who say things like "independence isn;'t all its cracked up to be, I do best in dependent situations." Hello. I'd like someone to help me with my self-care skills, too. I'd like a maid to clean my house, a cook to make my food, and someone to hold my hand while I go to the grocery store. However, being an adult means being able to do things for yourself, to be responsible. Being independent is part of being grown-up. My job as a parent is to help my child grow up. Independence is the goal. I understand not everyone with autism will get there, but to harangue parents for having that goal is utterly offensive. It's as offensive as parents who want to make their kids "normal." To say you wished you could stay in some "magical" non-verbal world is saying you wish you could remain a child forever.

Hint: No one is "normal." Its OK to be "quirky" and "eccentric". But it is also a good thing to be able to dress, feed, and bathe yourself, be able to hold a job, and to have friends.

I am not asking Joey ot be a neuro-typical person. I understand that there are parents who do that. I am asking that Joey learn to care for himself, learn to relate to other people, and be able to have that opportunity to share his gifts with the world. For this, he needs help, and more help than Andy needs right now. He needs speech therapy, he needs occupational therapy, he needs intensive training to teach him how to learn and how to relate. He needs to have a connection between himself and the world around him. Its OK to be processing the information differently, but he needs to be processing the information.

Which brings my morning rant around to a another problem I see across the spectrum of the autism community: there is more than one kind of autism. This seems to be blatantly ignored. I have listened to parents of children across the spectrum of ASD, and the picture has become painfully clear to me that there really are at least two types of autism. Some children are born with autism already in play. Joey is this type. Knowing what we know now, we can see that Joey was autistic even in the hospital, when he freaked out over a warm blanket, and could grab and flick the doctor's stethoscope. Yes, as a newborn. Then there are the kids where the autism is triggered. They run into a problem, and they go overnight from being a happy, neuro-typical kid to silence and frustration. The trigger can be any number of things. The MMR vaccine triggered one child. A severe bout of flu triggered another child. I knoew kids who were triggered from stress, from illness, from poisoning by metals or other toxins. It happens. In fact, Joey may have had his trigger right from the get-go, when he went into distress during delivery; perhaps all kids are triggered, and its just a question of when and how. Then again, there are the kids with unusual head growth, which may be more of the at-birth type. At any rate, there are kids who start from the get-go being autistic, and there are kids who are fine, and then become autistic. They all need help to be able to function in the world. We can't just leave them in that magical non-verbal world, because then they never learn not to wander into the street, to dress and care for themselves, to grow into the human community. And after all, we are all humans. As the Dalai Lama once noted, without the human community, one human alone cannot survive.

Commentary: 10 things Your Autistic Child Wishes You Knew

I am working on this as series of posts in reation to some of the "lists" I have been seeing about autism and children with autism. Some of the lists are good. Some of them are not. I'm going to start with one that is well-intentioned and useful, but which obscures problems associated with autism and getting services for children with autism.

Part One: Ten Things Your Autistic Child Wishes You Knew

This is a list that was posted on an autism support board I was reading.

1. I am a child with autism. I am not "autistic". My autism is one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings, and many talents, or are you just fat (overweight), myopic (wear glasses), or klutzy?

Commentary: Actually, when providing services or trying to get services, you do describe yourself as fat/obese, myopic, or even clumsy. If I want services for diabetes, I am referred to as diabetic. The problem comes when everything related to my child is blamed on his autism. 'Normal' children(or more properly, 'neuro-typical') have sensory issues, intense interests, and communication problems. Normal is what you are. There is no such thing as a neuro-typical individual; the idea is an ideal, and we all have quirks. The autism is only a problem when it become debilitating, and then we need to disccus Joey as autstic, in order to get him some help for dealing with attributes related to his autism which do not allow him to function in the neuro-typical, non-autistic world- blocks to his independence and happiness.


2. My sensory perceptions are disordered. This means the ordinary sights, sounds, smells, tastes, and touches of everyday life that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you, but I am really just trying to defend myself. A "simple" trip to the grocery store may be hell for me. My hearing may be hyperacute. Dozens of people are talking at once. The loudspeaker booms today's special. Muzak whines from the sound system. Cash registers beep and cough. A coffee grinder is chugging away. The meat cutter screeches, babies wail, carts creak, the flourescent lighting hums. My brain can't filter all the input and I'm in overload! My sense of smell may be highly sensitive. The fish isn't quite fresh, the guy standing next to us hasn't showered today, the deli is handing out usausage samples, the baby in line ahead of us has a poopy diaper, they're mopping up pickles in Aisle 3 with ammonia... I can't sort it out, I'm too nauseous!

Because I'm visually oriented, this may be my first sense to become overstimulated. The flourescent light is too bright. It makes the room pulsate and hurts my eyes. Sometimes the light bounces off everything and distorts what I'm seeing. The space seems to be constantly changing. There's glare from windows, moving fans on the ceiling, so many bodies in consttant motion, too many items for me to be able to focus, and I may compensate with tunnel vision. All this affects my vestibular sense, and now I can't even tell where my body is in space. I may stumble, bump into things, or simply lay down to try to regroup.

Commentary: This item is useful for people with no background or understanding of autism. However, trips to the store or into the outside world are not "hell" for all people with autism. The point is to highlight sensory issues that are possible. Joey loves going to the store (though lately the Walmart has been a bit overwhelming). However, he has vestibular issues. Ever walked down the stairs, miscounted, and thought there was one more step? remember that feeling of your foot suddenly meeting the floor, when you were expecting more time before the shock hit your foot? My child goes through life liek that, with every step.

I also know that Joey does not only tunnel-vision, but tunnel-hears. When there is just too much, he cannot deal, and cannot either see or hear you; or he cannot filter propoerrly, so is seeing and hearing things other than what you think he is hearing or seeing. Neuro-typical people do this as well. Ever be listening intently to music or watching something, and suddenly realize someone is trying to get your attention?


3. Please remember to distinguish between won't (I choose not to) and can't (I'm not able to). Receptive and expressive language are both difficult for me. It isn't that I don't listen to instructions. It's that I can't understand you. When you call to me from across the room, this is what I hear. "!!%#@%*^, Billy. (*&)^^$%$" Instead, come speak directly to me in plain words. "Please put your book in your desk. It's time to go to lunch." This tells me what you want me to do, and what is going to happen next. Now it's much easier for me to comply.


4. I am a concrete thinker. I interpret language literally. It's very confusing for me when you say "Hold your horses cowboy!" when what you really mean is "Please Stop running." Don't tell me something is a "piece of cake" when there's no dessert in sight and what you really mean is"This will be easy for you to do". When you say "It's pouring cats and dogs", I see pets coming out of a pitcher. Please just tell me "It's raining very hard". Idiom, puns, nuance, double entendre, and sarcasm are lost on me.

Commentary on 3 and together: Problem? In dealing with the neuro-typical world, these children need to learn about idioms and complex instruction and speech pattern. You cannot get a regular job and expect everyone around you to accommodate a need for plain English. If the goal is to help these people be independent, we need more services for speech and language. However, no one wants to provide them. The schools provide minimal service only if you have a severe (25% or greater) delay in speech and language skills. Insurance often does not cover speech therapy, as the service is viewed as educational. You get caught in a catch-22 of semantics!


5. Be patient with my limited vocabulary. It's hard for me to tell you what I need when I don't know the words to describe my feelings. I may be hungry, frustrated, frightened, or confused, but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation, or other signs that something's wrong.

There's a flip side to this: I may sound like a little professor or a movie star, rattling off words or whole scripts well beyond my developmental age. These are messages that I've memorized from the world around me to compensate for my language deficits, because I know I'm expected to respond when spoken to. They may come from books, television, or speech of other people. It's called echolalia. I don't necessarily understand the context or terminology I'm using, I just know that it gets me off the hook for coming up with a reply.

Commentary: this is just more emphasis on the need for proper, appropriate, adequate speech and language instruction and services. To be able to function, an individual needs to handle complex and abstract concepts and thought. We need to do more work on how to teach these skills, just as we teach them how to learn other concepts and skills.


6. Because language is so difficult for me, I am very visually oriented. Show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of patient repetition helps me to learn. A visual schedule is extremely helpful as I move through my day. Like your day planner, it relieves me of the stress of having to remember what comes next, makes for smooth transitions between activities, and helps me manage my time and meet your expectations.

Commentary: This item implies that visual orientation is due to language difficulty; however, I would suggest that the other way around is more likely. Because Joey is so visually oriented, oral communication is more difficult, as it makes less sense. Many autistic individuals (not all) are very proficient readers, and can communicate very well using computers and written language; however, they become like Mrs. Who when it comes to forming their own thoughts and words orally.

I have no problem with raising a Mrs. Who, so long as we can make the quotes all appropriate.


7. Focus and buildon what I can do rather than what I can't do. Like any other human, I can't learn in an environment where I'm constantly made to feel that I'm not good enough or that I need fixing. Trying anything new when I am almost sure to be met with criticism, however constructive, becomes something to be avoided. Look for my strengths and you'll find them. There's more than one right way to do most things.

Commentary: I have been begging Joey's teachers and therapists to do this- let's use the skills he does have, the interests and strengths he displays, to teach him things he has more trouble understanding and skills he has trouble mastering. I am tired of paying money to have him evaluated and programs planned, only to have those programs include teaching him to count, name colors, and recognize letters. He already counts to 120, knows all his colors (and in fact, defaults to this if he doesnt't understand the question you are asking), and can read. Thanks. Can we please use these skills to teach him to ask questions, respond to multiple cues, and other important building-block skills?


8. Help me with social interactions. It may look like I don't want to play with the other kids on the playground, but sometimes it's just that I simply don't know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, I may be delighted to be included.


Commentary: When I hear about the trouble the parents with elementary-aged kids are having with getting the school to organize social groups, it makes me extremely angry. Other kids get opportunities to build social skills- lunchtimes, parties, class changes, special events- my child deserves a change to build these important skills as well. Social skills are vital life-skills. Without them, you cannot hold a job, participate in human relationships, or function with other people. We all know people with poor social skills, and the stigma they face. Who wants to be around people who are rude, cold, or appear self-centered? People who seem to ignore basic social etiquette? We label them as nerdy, weird, eccentric. We ostracize them. We don't invite them to the Christmas party, to lunch, or even to small conversation. We actively exclude people who are not pleasant to associate and socialize with. Social skills need to be taught, emphasized, and worked on, just as much as any OTHER skill. Yes, social skills are vital to independence and success!


9. Try to identify what triggers my meltdowns. This is termed the 'antecedent'. Meltdowns, blowups, tantrums, or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses have gone into overload. If you can figure out why my meltdowns occur, they can be prevented.

Commentary: This is a fun one. What situations cannot be avoided? What skills are needed to get Joey through these situations? My school personnel are sayign he cannot tantrum and be in an inclusion setting. This is bullcrap. His classroom may need a paraprofessional to watch for antecedents and help the teacher with teaching coping skills, but these meltdowns are not normal. They are not intentional. They are part of a disibility that should be accomodated, and when he is accomodated properly, THEY WON'T HAPPEN.


10. If you are a family member, please love me unconditionally. Banish thoughts like "If he would just..." and "Why can't she..." You didn't fulfill every last expectation your parents had for you, and you wouldn't like being constantly reminded of it. I didn't choose to have autism. Remember that it's happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you that I'm worth it.

Commentary: I thought this was an interesting item when I read it. When I wasn't fulfilling my parents' expectations for me, I bet you they were thinking "If only she would just..." and "Whay can't she...?" And in fact, when I am askign these questions, I am looking for answers to help Joey learn necessary skills. It also completely discounts a parent's frustration, which occurs even with parents of neuro-typical children. Are parents of neuro-typical children allowed to be upset, disappointed, and frustrated? If they are allowed, why aren't I? Perhaps we need to focus on the outcome instead. Being frustrated, disappointed, or upset does not give a parent permission to have their own temper tantrums. However, it happens. Then what? And what about other "family members"? And what about supporting those parents who are trying hard to support their children? Insurance semantics, school manipulation, anything and everything not to get services to my child, and telling me I have to now be a professional child advocate, speech therapist, occupational therapist, school teacher, special education teacher, etc.... Hello. I'm an art historian. If I could suddenly be all of these things, why do I have to pay all these people? Why do they have to go get college degrees in order to practice? What's that all about?

Continuing item #10:

It all comes down to three words: Patience. Patience. Patience.

Commentary: Yes, indeed. Somehow parents of disabled and "differently abled" children are supposed to have an extra measure of patience. It would be nice if those who are supposed to be supporting my child- his teachers, his therapists, his administrators, etc- would show that same support and patience... It get very frustrating to have pateince preached at you, when everyone around you is working against you, resulting in stress- that lowers patience.


Continuing item #10:

Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts that autism has given me. I may not be good at eye contact or conversation, but have you noticed that I don't lie, cheat at games, tattle on my classmates, or pass judgment on other people?

Commentary: Well, no. Joey does lie. He does tattle on classmates. He does try to cheat at games. There are people he likes, and people he doesn't like, which is definitely "passing judgement." These are normal things to be doing. However, he does have important talents and abilities. He may not be good at speaking, but he can tell time and read and count and understands concepts of quantity. He may not be able to initiation play with his classmates, but he can ride a bike in figure-8s and is excellent at memory games. This item was simply not stated very well.


Continuing item #10:

You are my foundation. Think through some of those societal rules and if they don't make sense for me, let them go. Be my advocate, be my friend, and we'll see just how far I can go.

Commentary: teaching social graces and basic social rules is vital to independence. Why is it necessary to sit in a resteraunt? Because you disturb other people if you stand to eat. If you don't greet people, they may find you rude. If you can't keep your hands to yourself, you could be arrested for assault! Which social rules do you really think can be set aside? How will setting those rules aside help the child become independent?


Continuing itme #10:

I probably won't be the next Michael Jordan, but with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh.

They had autism too.

Commentary:
We only speculate that these people has an ASD. We don't know. However, I like the inclusion of Einstein on this list. I keep hearing about "Einstein Syndrome"... but from everything I read about it, it sounds like ASD to me! High-functioning people with autism still have autism. They still need to be taught to learn and to socialize. They need to be taught skills to encourage independence. They need to have their sensory issues addressed. They still need services. They have the same right to the opportunity to live independent, functional lives as any neuro-typical child.