Friday, March 21, 2008

Books and conversations and politcs and stuff

I'm reading this: Asperger's Syndrome and Difficult Moments: Practical Solutions for Tantrums, Rage and Meltdowns. I don't know if it's helpful or harmful to read it. Pervasive theme of the book is that once the child has experienced a rage, there is nothing anyone can do but to ride it out. The teachable moments occur as the child is building up to a rage, or during the recovery period after a rage. The fact that an Asperger's child has modeled the correct behavior and response to stress in the comfortable atmosphere of the clinician's office does not mean that the child is able to access that same information when they are under stress. Many "aspies" have excellent memory, but items in their memory are not easily accessible. I know this. I've described this over and over. Yet I still get phone calls saying, "Saul's upset. Boy oh boy is Saul upset. He's more upset than I've ever seen him."

"OK. What was happening just before he got upset?"

"Oh. I don't know. He just suddenly got upset."

And then the rest of the conversation is all about what behaviors he displayed WHILE he was upset, what punishments should be considered for his behavior, how very scary he can become if he cannot be calmed, etc. (Hint. He cannot be calmed. Deal with it. Here's a tip --- you need to work on preventing him from becoming upset in the first place. Remember? We talked about this a while ago. Remember? Hmmm? Lessening his anxiety and increasing his self-esteem comes from moderating his environment so that he is less likely to explode. Right? So why am I expected to lay the disapproval and consequences on like a trowel when you have failed to prevent another outburst?)

Reading this book, I'm stuck every few pages saying to my self, "Uh huh. Yup. Absolutely. No question about it. I know this. Why don't the professionals at the school know this?" It's affirmative to read that certain techniques are state of the art, appropriate, and respectful. And in the same breath, it's infuriating to know that the school thinks that these techniques would be inappropriate for him because he's...because.... Um, where is the because there? Because they are hard to apply? No, not really.

Do they think he's faking?

Most of it is that they really have no training in autism -- Their knowledge is all in the Oprah Winfrey version of Kanner's Autism: one day my kid was adorable and the next he couldn't speak. "I have this tear-jerking video right here to show you what he could have been." I have every possible sympathy for the heartache that these parents have gone through and continue to go through. However, that's not my child.

My child doesn't LOOK disabled. His face has the correct muscle tone. His eyes are the "right" shape. He doesn't flap his hands, tap his feet, or have tics. He has good muscle control and hand-eye coordination. He hears fine. He can carry on conversations. He just interprets what he hears in a very different manner than you do. Parallel conversations are the norm in our house.

I was talking to a friend this morning whose son is only five -- he's just like Saul. I had sent her a letter from a parent who was writing me to complain about all "those disruptive children" in the classroom. She and I are planning to push for a different elementary program, but first I wanted her to see what the general education parents are being told about special ed children by their very own general education teachers. Her response was interesting.

"It's racism. Poor and simple," she said. "If my child looked different, then he'd be patted on the head in a condescending manner and all the adults could congratulate themselves on their own charity in *allowing* that child to participate. If you look different, there's a different standard.

"My child looks the same as the others but has a different brain. Suddenly, there's no charity any more. If it doesn't make you feel good to be understanding, then there's no point, is there?

"I could explain to these people again and again and again that a doctor has diagnosed my child as having a developmental disorder, something wrong with his brain or nervous stem, and they will not give him the slack to struggle with his disability. He has to be pitch-perfect every day. If he isn't, then the teacher gossips to the room mom about how difficult her day is. And that room mom goes and tells four other parents about the child who is *allowed* to act up in class. If my child were drooling, they'd love having him there. They only want sweet idiots in the class. Not the ones that could really boost their test scores if you could just stop talking at them long enough to give them some room to breathe."

Wow. She catches on quick.


I got my first real "We need you on the school board" recruitment call yesterday. From a person who really wants me to be on the City Council, but who first wants me to run in a special election for a school board seat this summer, because then I could get some stuff done and run for City Council in November of 09 as a sitting school board member.

Are you fucking insane?

Did you notice that I got exactly nothing accomplished while I was up there because no one wanted to play ball with me? Why oh why oh WHY would I run for City Council from an active seat on the School Board? Sitting the special election out and then running for a city seat actually makes more sense, but hello? I don't want to run for city council. Zoning ordinances. Water reclamation rights. Public safety. Street lighting. How does one stay awake during a meeting like that?

And if you're so all fired to get a smart woman on the city council, why don't YOU run? If you want someone to run against the most recent school board appointee whom you don't like because the appointee said that she was using the school board as a stepping stone to city council, then, uh, why do you think it's a good idea for me to do the exact same thing? OR, why don't YOU run for school board and leave me the hell out of it?

Ugh. People. Most of the time I don't really like 'em too much.


Bev(BB) said...

You last line reminded me of one of my father's favorite sayings.

"Everyone is crazy but me and thee and sometimes I'm not to sure about thee--"

The world can be a strange place, don't ya know?

Suisan said...

Yes, Bev. It can be.

Anonymous said...

You won't agree, but I just think it's an unhelpful way to summarise the situation.
If your friend goes into school with the mindset that the teachers and the other parents are racists - would people ever respond well to that?

Marianne McA

Bev(BB) said...

For what it's worth, the woman's wording may be unfortunate but I understand completely where she is coming from having raised a child who didn't quite "fit" into the mold the school system wanted her to fit into. She wasn't "disabled" the way they needed her to be in order to give her services she actually needed, but she couldn't "function" within the regular classroom the way they needed either.

So, yeah, I understand the frustration behind the words. And whether we want to face it or not, it is discrimination. The problem is that it's against a fringe population of the disabled community itself simply because some individuals don't even fit into the expected molds there. It isn't intentional on anyone's part necessarily but it does exist.

Never let anyone tell you differently, Suisan. And email me privately if you ever need to talk about it.

Anonymous said...

I'm not in that position - but even so, yes, I can see the frustration behind the words, Bev.

I'm just saying that I can't see how you achieve a positive relationship with the teachers and the other parents, if you prejudge them as necessarily prejudiced against your child. And I think that fortress mentality can lead you wrong. I know my sister really fought to get her child into mainstream school, which she was patently unable to cope with. (No language, no social skills, not toilet trained.) And none of the teachers in the family could say the blindingly obvious - this child will gain nothing positive from that experience - because we'd have been cast forever as one of the discriminatory hordes.
My sister was fighting so hard, that she'd have seen a different opinion as a betrayal - and while I understand that instinct - if they're not for me, they're against me - I still think it creates problems, in that no-one who loves her is quite honest with her.

Should say I hugely respect my sister. She has campaigned hard, and has been instrumental in forcing a big rethink of the provision for autistic children in her area.

Marianne McA

Bev(BB) said...

Ah, but Marianne, it's not a fortress mentality if one is alreay living it nor it is prejudging them if they're already doing it, is it? See, there's the rub.

And if one is already at that point the positive relationship is already in jeapordy anyway. Respect goes both ways.

Suisan, hang in there, girl.

Suisan said...

Marianne, if you're still reading my blog then you know that I have again and again posted that THIS is the new person who will help my kid. I am constantly positive, only to be beaten back again.

Stop with the pollyanna stuff. I DO work with the school system, and every time I vent about my frustrations with the school system you come back and say that I have to learn how to work with them. That I have to speak to teachers first and not prejudge them.

I *Don't Prejudge* them. I judge them as idiots after they have fucked up.

And yes, I get frustrated. The point is, my friend is only just starting out in the system and she's a lot less patient than I have been and has reached the same boiling point that I am at within only a few months.

Marianne, I am not your sister, and my son is not your sister's child.

Anonymous said...

Suisan, I know you're not. And I know he's not.

Reading the subtext, I think I'll sidle away quietly.

Wishing you all the best, and I've enjoyed reading your blog.


Suisan said...

Marianne, I don't think you understand that my son is successful and has been successful at school.

He is toilet trained, he is conversational, etc. Every time you make a comparison with some child who isn't it's wildly upsetting to me. I have to go back and say, "No, you missed this point. And no, you didn't read where I said blah blah blah."

I cannot stay constantly positive about people who are supposed to be working to educate my child if they are actively working against him. And I should not be blamed for being a myopic mother for saying that he is able to be successful if the TEACHERS would follow what is written in the documents.

Stay and read if you want. It's a public blog. Comment too. Again, comments are always open. But if your feelings get hurt by what I say about teachers, then you might want to spend a minute figuring out why it is that you seem to believe that no teacher can do wrong and why the parents have unrealistic expectations. I think that's where we seem to disagree.

There's no subtext here. It's all out on the page.

Happy Easter

crabbypatty said...

I wish I didn't know what you are going through but, unfortunately, I do. My daughter has aspergers but "Gee she sure looks normal" In all fairness I may have thought the same thing 10 years ago.

It's so hard to explain the difference between a meltdown and a "tantrum" to someone who doesn't get it. I have had the best results by explaining a meltdown as her body going into "fight or flight" mode. It's not going to be rational, it's survival, and no threat of losing her smiley face or gold star for the day is going to make a difference in that moment.

Most people understand fight or flight on some level. If you can get them to understand that it doesn't have to make sense to them,the why or the how,it just is what it is. Identifying triggers and preventing problems from building up are the only way to stop it. To that end. I found some great stuff at this site
to print out for use at school. I hate to jinx us but we have had a mostly problem free year so far. It is possible!!
Good luck

JayP said...

I stop into your blog now and again because I really admire how you stay in there working through the school system for your kids.

My ds has Aspergers and we left public school for homeschooling after 4th grade. Six years later I still recall my anger and resentment toward our local school system for the same mindset of discrimination your friend mentioned. He just needed to learn how to fit in was their emphasis - everything was geared toward "fixing" him so he could pass for neurotypical. Imagine the outrage we would all have if a child in a wheelchair was only given accomodations that focused on getting him up and walking!

In our case my son didn't have rages and meltdowns at school - he turned all of that anger and fear into himself. I worked hard at having good relationships with the teachers and others he dealt with but they never followed through with accomodations or supports we agreed on - just kept shining me on at meetings and sending home a stressed and anxious child everyday.

I know people who have been able to have some good periods with their spectrum kids at school by happening into helpful and clued in staff. I hope the same can happen for you. Sorry for getting on my soapbox, but I have a lot of fellow feeling for how tough it can be.


Suisan said...

Crabbypatty and Jayp, welcome!

Thanks for the docs, crabby. As it s, my son has had an FBA and supposedly have a behavior intervention plan which includes collecting data as to what triggers each outbreak.

The staff won't fill in the information. It's too much work and they don't understand how to observe behavior. Uhhh. You observe his behavior when he's stomped out of the room. Can you not observe his behavior before he leaves the room when he's sitting at his desk jabbing his pencil into the top and rolling his eyes? HUGE part of my frustration. Sigh.

I've really given up on this staff at this school. They've told me again and again this year that they can't help him because they don't know how to fix him. They're not even working with him anymore -- in a holding pattern until he gets transferred.

crabbypatty said...

"because they don't know how to fix him."

That's the problem though. It's not their job to fix him. You have other professionals for that. It's their job to do the best they can with where he is right now. Maybe he doesn't need to be "fixed".

Suisan said...

Yeah, I know. I keep saying, "Your job is to get him through the fourth grade. It's my job to see him through the rest of his life. He's not going to be fixed. Stop trying."

But then I hear of another aid who quit because she couldn't fix him.

People seem to have a well-developed rescue complex.

Bev(BB) said...

Eh, not sure that's a rescue complex so much "taking it personally" one. Any other "special needs" aid would be fired for trying to "fix" their client instead of first understanding and then truly assisting them.

Maybe he needs a dog. No joke. Sometimes I honestly believe animals make such great special needs assistants because they truly understand the job description - to help. Once they get it, they get it.

Suisan said...

Oo! Ooo! Does that mean I get to get another dog? Just wait until Dear Butcher reads this!

(Currently we have a dog, a cat, Saul's corn snake which lives in his room, three frogs and thee guinea pigs. I think he's got a good assortment of animal companions.)

Trick is: Can we get the school to allow the dog to come visit him in class? That would be cool.

Gifted said...

Dear peeps,

I(35yrs)have this week been informally diagnosed with aspergers as well as my daughter(5yrs). Thank God is all I can say. I knew something was going on and couldnt have been more elated.

Please dont take this as a patronising remark or be too concerned by the medical history which ensues. In order, Milk allergy, Endometriosis, Nocturnal Epilepsy (near fatal), pancreatic insufficiency, sight loss migraines, advanced scoliosis waiting to be diagnosed with addisons disease and hypo thyroid.

If any of you are aware all bar the scoliosis sit in the endocrine system (scoliosis caused by endocrine system). The autistic geneome carries a number of faults within the endocrine system, the scoliosis occurs (not usually to my degree & most of the population have some form of curvature of the spine)due to the vitamin and hormonal imbalances associated with the genome.

After writing all of that I still feel gifted and blessed to have aspergers. WHY?!?!? I hear you frustrated parents.

The magority of this can be counter balanced by balancing the endocrine system. A good chiropractor can re align the spine and frame as much as possible, the endocrine medication will then remove inflammation to allow free flow of the spinal fluid, which is just VITAL.

As for the quirks which is what im gonna call them, unwittingly my father (also aspergers) passed on coping mechanisms down to me which I have passed to my daughter. Epilepsy association should be able to help with memory tricks. I am also at an advantage as Ive have severe epilepsy and regained all mental capacity (that was not always the case)

As for the teachers, is there not an association over there that you can speak to regarding schools that do cater for us "gifted's" rather than being affected by more negativety and closed mindedness.

If anybody wants to be a jerk, cut them off, youve got bigger things to worry about. Like having fun, once youve learnt how to adapt to the differences and found a supportive school you can have some top fun with your aspergers child.

I dont know if you have anything like a steiner school over there which concentrates on EQ as well as IQ where others really really dont, get info off them and mensa.

My IQ has been tested at top 2% but with the addisons / adrenal issues its been a bit difficult recently to not sleep for the next day after doing research the day before & applying my IQ elsewhere is way off beat. Plus Ive been a total nightmare the worse my endocrine system got, I had been on supplements and saw a dramatic positive change in a lot of my bad behaviour, it was short lived. Went to see a specialist who advised me I need full strength medication. Which I am impatient for, I know I will be able to access so much more and have a balanced attitude after as Ive lived it.

I only ever got to a point with my mental recovery after the epilepsy, until I started taking an aloe vera supplement by dr wheeler usa for my pancreatic insufficiency, it was strange and brilliant all at the same time, random memories came flooding back, I kept phoning mum to say "did this happen", "yes love". Ive been flying high, mental agility wise, ever since.

Your roles as parents are just as important as with all children. Aspergers children and adults are amazingly intelligent, sometimes to the point where they cant believe it, because of the different thought processes they can give profound input into their specialised subjects (mine are all based around logic - which can be applied to everything) my daughter at the age of 3 half years told me that we could go faster than the lorry on the flyover because we were lighter. Im sitting there freaked out saying "yes that's right poppet". Why freaked out, we all want super intelligent children, I thought (swear word) she's is vastly more intelligent than me, how will I cope.

You do of course we are bith from the same gene pool and love each other very much, which is one of the most important aspects of an aspergers life. Knowing that its ok, even good to be different (we all are)and to know that you are loved unconditionally even though you just did the most amazingly stupid thing again, your parents are exasperated but they still love you.

Getting back to the epilepsy, I had used coping mechanisms before the epilepsy (27yrs old) and remembered that I had used the singing, counting, game to remember things (bearing in mind I did have a 20 second memory span months before) and that I needed to get information into my long term memory as I knew it was my short term I was having an issue with (big on medical info before and after) so "money, cigs, phone" became a daily tune. I also sat for days chanting my daughter's date of birth until eventually it went into my long term and it's there, I visualise it as I now know is why Ive always learnt visually - aspergers trait.

If your vunerable (in my experience) people will actually line up to kick you. Its an opportunity for lazy arses to get out of doing what they are paid to do and quite frankly should be doing on a moralistic level anyway. You do not have to participate in the games.

Its taken me a long time as I have a very strong sense of black and white, right and wrong. We are not here to sap all our energy trying to force flows in the other direction, it's to do with a change of perspective to achieve the same goal, without all the petty unnecessary grief. Their hell leave them to it. The enlightened ones will follow when changes are seen. Its human nature.

Gifted and proud (and demanding - in a nice way)