another post on Asperger's Syndrome

by terabletera 13 Replies latest jw friends

• 

  terabletera

  Mulan, thankyou for bringing up this subject. Gawd parents of these children feel so very alone and we often are.

  I am constantly in a battle with our small town school and we have made some great changes for future situations but it has cost me dearly. Inability to keep the same job due to the constant battles and needs for my son. I am now again in a battle. It got heated last friday and concluded today. Just a battle, not a war. This one is hard to win. It's with the high school now and all they are interested in is football stars, not odd balls like my son.

  I have cried before I've gone to bed for the last several days and have woke up twice crying at 6 in the morning. Honestly, I am not a cryer. It just gets to be so draining and tiring. I've basically been schooling him at home, the school does nothing. He is still failing miserably and we may have to involve the state capital again..trust me, I am not loved in this town.

  I am a very non confrontational person by nature but I have had to find the lioness in myself to stand up for my son. There are always always always the teachers that say "Oh yes, Asperger's Sydrome, I know all about that. Read about it in People Magazine." Oh, I'm sure they are fully informed! ha ha. Now I can say with all seriousness, "I know far more than you do. I live with it" I make them listen. Anyway, I was comforted just reading that thread because it is an issue I deal with daily. My son also suffers a great deal from Tourettes Syndrome on top of it all. He's been bullied so badly that the school has had to escort him to the bus and wait for him to show up at school to protect him from some kids. We got that taken care of....for now. Isn't it funny how they call me instantly to explain why he's been given the harsh penalty for his "tantrum" when leniency has been repeatedly shown to those who have harrassed him? That one involved The state capital of administrations of schools I tell ya that much! Gawd I was livid! Grr, sorry sorry. It's a sore spot here today. Thank you again.
  Tera
• 

  Mulan

  Hey tera, thanks for bringing this up again.

  I sure wish I had at least had a diagnosis when Dan was a child. Everyone in the family knew he was different, and outsiders just couldn't understand why we let so much go with him. The compulsive behavior was okay dealing with, but some of his behavior WAS embarrassing to us all. We all treated him like he was normal, because we all thought he was.............just a different personality.

  The older kids, who were 16, 13 and 10, when he was born, all wondered where he came from. He was very premature, so we wondered if that had an effect on his nervous system. His pediatrician said he was exceptionally bright, and that would explain some of it. I guess he had never heard of Asperger's syndrome. I hadn't until two weeks ago!! There was just no clear explanation for Dan.

  Tourette's must be so hard to deal with for you. (dealing with other people, I mean) I was at a lab a few years ago, and the woman at the desk, taking my information, had it. I didn't get it at first, and wondered what the heck she was doing..............and then I realized she had Tourette's. I thought she should be wearing a button or something explaining. I'm sure not everyone knew about that syndrome either, and would wonder why she made the odd whooping noises and shook her shoulders every minute or so. I sure felt sorry for her.
• 

  pettygrudger

  Tera - exactly what difficulties are you having with your ISD? Are you having problems with them implementing your IEP, or in getting the appropriate IEP itself? Does your son have an individual aide to help him throughout the day?

  Have you heard of Cause (Citizens Alliance to Uphold Special Education) or the ARC? These are 2 groups that can help guide you through some of the nuances of getting your school district to listen to you.

  If there is anything I can help you with, please feel free to email me. I am a Parent Advocate here in Michigan, but I don't know what state you are in, are what laws you are having difficulty in having the ISD enforce.
• 

  outnfree

  Tera (and Mulan ),

  I have a son who has been diagnosed as having Oppositional Defiance Disorder, but am wondering, now that I've read about this syndrome, if his is a correct diagnosis. It bears looking into.

  I haven't had him in Special Ed, but I spend an inordinate amount of time helping him with his homework and I also have experience with the devastation of having an "oddball" as my kid. It was obvious to me from an early age that he lacked empathy. At first I thought it was because he was a boy--I have two older girls--but it's been apparent since third grade that there is something more. That's when he began to lose friends. He has none. At all. He is a freshman in high school now. We keep trying to teach him to put himself in others' shoes and to hold his tongue rather than always being ready with a smart remark (he gets sarcastic rather than show his hurt; he is depressed, too) but he insists that "SOME people like him the way he is." Well, those "SOME people" never invite him to do anything socially.... He is compulsive, too. He takes bathes frequently to soothe himself when he's upset. He is brilliant. His biology teacher says he sometimes knows more than the teacher does. Unfortunately, he's also a show off, which is further off-putting to his peers. He is having a horrid life, and I feel awful for him a lot of the time.

  Other times, I'm angry with him myself! And his sisters get annoyed with him. It's very stressful for everyone, isn't it? My husband is in denial that there's a problem except with "his mouth." The psychiatrists and psychologists think otherwise....

  You can't know what a relief it is to know that I'm not alone with these types of worries....

  outnfree (whose e-mail is open)
• 

  terabletera

  I will email you regarding this Rhonda. We do have an organization PLUK, Parents lets unite for kids that helps in these matters but they are overwhelmed. Getting the IEP to work is not as easy here as it may seem, I have had to involve other things to get things to work. parents out here seem to curl up and let the school ship their child off to the "academy" where youths with emotional problems are sent. They tried it with mine. I went and had a tour of the place to be fair but I said no. My son does not have emotional baggage. He is not victim of abuse or neglect nor did we wrench him out of a gang and disarm him, like most youths at the "academy" were. Most are from out of state. I am in Montana. A good ol' boy state if there ever was one. You wouldn't believe how cracker jack the schools are run here!

  As far as the TS goes, like Mulan said, it is quite odd to see it for the first time. My son's tics currently (they change over time) are a forced cough every three seconds, a "mum" sound in the back of this throat in between coughs, hopping(but that can be from the autism as well), and blinking, head jerking. Sometimes he'll enter a room with a loud clap of the hands (LOVE that one on a nice quiet morning!). Recently, my daughters were at a slumber party together. My son never gets invited anywhere by anyone, only harrassed by his peers (yet girls are very attracted to him until they realize how not like the other boys he is). He is very quiet really. He can talk for hours about a subject he finds facinating (like license plate collecting) and give you a quick run down of all the states that emboss rather than deboss....this can go on and on. :-) So while the girls were out, my husband and I went out to a pub in Billings and took him with us. He ordered rootbeer (that he'd drink forever) while we talked. I noticed that while he played with spilled salt on the table, (being aspergers at that time) he would repeat words said by people passing by our table, (the TS side of him). He heard nothing we were discussing. He looks normal. He really acts normal. Okay but there are times we think he is having a "rain man" day.

  Here is a really nice story I have about him that occured last summer. If you have a kid like this, you'll love it. We took all of our kids to the baseball game, it was highschool baseball. My son was more interested in the fact that we got him a taffy bar to eat. There were lots of beatiful teenage girls prancing about showing off their bellybutton rings and sparkly skin. They walked very gracefully in front of my son several times and would stop there and talk a LOT louder and giggled trying to get him to notice their very pretty little selves. Me and the husband thought it was cute. But he was still shaping the taffy bar, totally unaware that he is cute as hell. His hair is a bit long and we highlight it. He has taken on a mature build and is finally no longer that skinny thing he used to be. He has big green eyes too. Finally, the girls gave up and went on to where they'd be noticed, after all, why else were they there? Then our son turned to my husband and said, "Did you see that?" My husband chuckled and said "well, yes I did. But I didn't think that you did!" then my son said, "Well yeah! That wasp has been trying to get my candy for like the last half hour and I finally swat it in mid air!"

  We got a laugh out of it.
• 

  Mulan

  outnfree.........you've got mail!!
• 

  Brummie

  terabletera and all who are having to deal with the ignorance surrounding aspergers or autism, I do hope you

  will find the appropriate support and understanding.

  I work with adults with autism and a few are higher functioning but not totally as high functioning as those with aspergers, I stand in awe at the parents

  who have stood up and made their voice heard on behalf of their children. So thumbs up to you, its an exhausting

  journey but leads to a satisfying place.

  Brummie.
• 

  Francois

  This is very interesting to me since my daughter works with and is an advocate for autistic children. And she certainly can and does get up on her high horse about the way they are treated by the system, by other students, and sometimes even by their parents.

  I want to speak with her about Asperger's and the other manifestations of degrees of autism discussed here in the last few days and see what she has to say about it all. I don't have any idea she has information you're unaware of, but you never know.

  Hang on. I'll be right back.
• 

  shera

  That ticks me off,that people can be so mean towards people like your son.so far the children are wonderful towards Matthew,they love him and all give him hugs ,when he wants one.I don't know what I'd do if older kids are mean to my son.These children look normal and when you get dirty looks from people who don't know a thing about this person...it burns me up.

  I understand your feelings.

  Take care
• 

  Mulan

  My son, to this day, will go on and on and on and on, about a movie or a TV show or a book he's read. He remembers the dialog word for word, and will correct you if you make the slightest mistake in repeating a movie scene, yourself. He is oblivious to everyone else's boredom with the subject matter he chooses. He reads very thick, involved, complicated books too. He and my husband have both read the Colleen McCulloch "First Man in Rome" series, so far. In that book there are long, Roman names, at least three Latin words in each name. My husband is a very smart man, but gets the names mixed up, in talking about Roman history. Dan will correct him, and fill in the correct name, who they were married to, all their children's names, and the cousins, etc. It's mind boggling to hear him saying, Marcus Julius Gaius Copernicus (I made that up), and dozens more similar in rapid order.

  He was a Nintendo addict from second grade on. I could get him to practice piano everyday by promising a new game at the end of a month.

  Princess told us he was telling about an incident at work (he is a security guard) where a transient came into the building, he was patrolling at the time, and he told every minute detail of what happened, who said what, the looks on their faces, and everything. Someone else walked up to see what they were talking about and he repeated the whole thing, word for word.

  His wife is worse. She will tell his stories, as if they happened to her. Very annoying. And you can't change the subject. They will always come back to it as though you hadn't inserted a new subject. The funniest thing about her happened at a family party. My cousin Sharon's sons were meeting Emily for the first time, and we hadn't warned them about her. They were sitting in Princess' kitchen, in a booth seating, at the back of the kitchen. Emily slid into her seat, to chat, trapping them both, so there was no way out of the booth. I watched them looking at me, pleading to rescue them, as she chatted on endlessly about her work as a lab tech and the people she works with...............some people might think that would be interesting, but trust me, it isn't. I laughed in their direction, and shook my head. They both threatened to get even with me later.

  Dan is a very loving, dear man though. I can't imagine not having him.

  Edited by - mulan on 25 November 2002 17:12:56