new here, introduction, questions, and ramblings (no doubt)

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Really I dont know where to begin, I guess with my introduction...

Im Candy, Im 25 years old and expecting my 4th child in August. My other 3 are ages 2yrs, 4yrs, and 6yrs.

I first learned about Aspergers about a year ago when my daughter (then 3 yrs old) was diagnosed with Epilepsy, and was showing Autistic tendencies.

I began to read and study about Autism, and aspergers, the more I read back then on aspergers, the more I was thinking wow, that sounds just like ME!

But, I went on thinking surely with all of the doctors I had been to in my life some one would have caught something like that by now, plus, I didnt have time too think about it, I was completely devoted to researching my daughters conditions, learning about epilepsy, and trying to find out what was wrong with her since the doctors couldnt seem to figure it out.

The doctors are completely puzzled by her... at about age 3 she lost most of her language, she lost hair, she lost weight, she lost her potty habits and went back to diapers (after being completely potty trained from 18 months!) She also began spinning in circles, arm flapping, and her seizures worsened.

after getting on seizure meds she slowly made a come back, now she speaks as well as any 4 year old (when she wants to) she is back to using the potty with no accidents, the spinning and flapping have stopped, etc the doctors dont understand it...

though she is still not completely normal, no one really knows what is wrong with her now:( She doesnt seem to be at the level, of other girls her age in many areas (mostly social) or even many girls a full year younger. but she does not have the autistic tendencies any longer...

her neuro referred us to a child development specialist, I guess we will see what comes out of that.

Anyways, She just had an appointment with a new Neuro last week, and in talking about her, he was asking me questions about my childhood.

(the fact that I was diagnosed with ADHD, depression, OCD as a child) and he made the comment that I have the speech pattern of an individual with aspergers.

though of course we didnt talk about that much more, since we were not there to talk about me, but we were there for my daughter, it stuck in my head.

I plan to read up on aspergers more, and learn more. But from the little bit I have read, it sounds so much like me...

Social situations have always been hard for me, and though for my children's sake I am really getting out there and trying, I seem to only make friends who I have corresponded with for a long time by email before actually meeting in person.

I notice when i go to things like for example my husbands job related functions, all of the other wives seem to group up together and talk and such, but I am always alone, my husband tries to help me get into the group, he has taken me around and introduced me to each of his co-workers wives at the beginning of the night, but besides "hi, nice to meet you" I never get anywhere and it still ends up all of the woman talking in a big group and me standing off to the side somewhere wondering how its all done...


I have been told that people think I am stuck up, or that they say I think Im too good for everyone else. But this isnt true at all!

I tend to keep the types of activities I participate in fairly narrow, If i only hang around people who have very close interests to mine, I dont have as much trouble keeping a conversation going... (and going, and going, and going!! !)

For example, I tend to gravitate towards only homeschooling moms with kids the same age as my own, that way once the ice is broke (the ice breaking is the hardest part for me) then there is plenty to talk about since I am home schooling my kids.... but If I am around some one who doesnt fit into that category, i am at a complete loss as to how to interact with them...

Plus, the homeschooling moms I usually meet online and exchange emails to get to know them before ever actually meeting them in person. I have rarely ever had more then one friend at a time...

Another thing, I have been reading on the thread here about strange voice quality, people used to make fun of my voice alot when I was growing up,

When I lived in Missouri, people made fun of me I spoke very slowly, with a certain southern drawl, and enunciated each word (which made it all even slower) I just thought I had a Texas accent since I had alot of family from Texas,

but when I moved to Texas later in my childhood, and started school, the kids there made fun of me too, thats when I realized I really did have strange speech, and when the movie Forest Gump came out in my teens, kids really made fun of me!

They all said I sounded like Forest gump, and would go around repeating everything I say in a forest gump tone... (I hated that movie!)

I would go home and shut the door to my room, and practice talking FAST at night, I would say a sentence, and then I would say it again a little faster, and then again, only faster, etc...

I came back to Missouri to start high school, of all classes, I ended up in a public speaking class in high school, my first speech I was to give to my class I stood up in the front of the class my speech in hand, and started to give my speech.

After about the first paragraph two boys in the front row started to make fun of me, and doing forest gump impressions.

I wadded up my speech papers in a tight ball, and threw it at the boys, screamed out a long line of cusswords, and stormed out of the class, and never went back...
(literally, never went back to speech, or high school!)

I went and took my GED and got high scores on it and went on to get married at 17, and start a family, I got pregnant with my first child at 19.

I am able to coach my kids in how to make friends, but I cant seem to make friends myself, of course they are young enough, that I tell them to just go and say "Hi, want to be friends? lets play a game!" but obviously that would not be appropriate for the adult world of making friends, lol.

Anyways, I had a feeling this would be a long rambly post, my thoughts in this area are scattered all over the place!! ! but where I am now, is If I do have aspergers, what do I do, and if I dont, then whats wrong with me!! !

Or should I do anything at all, or just realize that i am different then other people for what ever reason(aspergers or not), and just go on with life?!

Ill be honest, I really believe I do have it, but with that, do you do anything, or just learn coping skills? (which is what Ive been doing for the past 25 years anyways!)

Is there anyway to know for sure if you have it? (Im afraid to go to a doctor, because I have had so many 'diagnoses' that have screwed up my life, I was even diagnosed with schizophrenia once, but beings that I outgrew it, and you dont out grow schizophrenia a more recent doctor has said that it was not schizophrenia but rather severe anxiety)

And now, ever since having children, I have been... for the most part pretty normal (I still have some OCD issues and anxiety, but I am able to hide those from others pretty well and appear very normal)

I never told my husband what our Daughters doctor said about me, I only gave him the update on her. I dont want him to know, I want so badly to just appear normal to him...

Thats what i have strived for my whole life, to just seem like a normal person even though I have never really been 'normal' (by the way, what is 'normal' anyways? sigh...) ok, Ive completely lost track of where I am going with this thread, and my first child has just woke up for the day, so I have to go start my morning, if any one has any words of advice, or words period for me, I would appreciate it
Candy


I have tried to Edit to at least include the spaces, I realize my spelling may not be the best, and I know my sentence structure, and use of Capital letters isnt too great either, but I dont have time right now to fix all of that, hope this helps some, I will try to pay more attention to these things in future posts

Last edited by Candy on 29 Apr 2006, 7:39 am, edited 2 times in total.

Welcome to WrongPlanet.net! If you do have Asperger's, you don't necessarily need to get a diagnosis. A lot of the members here have chosen not to do so for various reasons.

Hi Candy

A few thoughts

About the potty training - Apparently diffculty here is common with aspies. I wouldn't use a normal toilet until a friend my age (4?) showed me how to do it and not fall down the hole. I can't remember why I was scared of that. My sister was terrified of the flush noise, so she'd use the toilet but someone else had to flush it.

http://www.aspires-relationships.com/as ... by_age.htm

Flapping feels good. It is comforting in times of stress. Or it just feels good. I like spinning on those nice rotating desk chairs.

I don't know any more than your docs why your daughter suddenly stopped developing normally and then went backwards. It sounds horrible. I'm glad things are on the improve.

I think ADHD and Aspergers are often confused because aspies have trouble concentrating on things that don't interest them. However if something does grab their attention they concentrate so well that they tune out the entire rest of the world including people calling them. Well I do. Some aspies can have a hard time following rules that don't make sense to them, they will actively try to enforce rules that do make sense. I think ADHD just have a hard time following rules. There are still no hard and fast rules for diagnosing aspergers - you don't have to have all the traits to have it, and even if you do have all the traits you still might not have it. It is also possible to learn to manage it well enough that a therapist would not be able to make a confident diagnosis in the adult.

The speech problems and even the party problems can be overcome with training. In times of stress what I call my "dark side" will return but most of the time I can remember to speak clearly, and to ask polite questions to get other people talking, listen to their answers, pay atttention and ask more questions related to what they just said. There are also books on body language and how to read whether people are interested or bored etc. There are also books on conversational skills, and there are clubs that teach communication skills including public speaking where nobody is allowed to make fun of the speakers - and nobody would want to because it will be their turn next.

I used to get called "stuck up" all the time. The way around it for me was to "pretend" everyone was pleased to see me, instead of trying to figure it out by looking at them hard (and I'd frown too - not good). Other people would read this as me disapproving of them and infer I was stuck up.

I gave up on trying to pretend I was normal when I was very young and decided that normal meant ordinary and ordinary was boring - maybe I am stuck up after all. By the way there is a book out called "pretending to be normal (living with aspergers)" I don't know if it would help you or not, I haven't read it.

http://www.amazon.co.uk/gp/reader/18530 ... eader-link

Asperger's is related to "Schizoid personality disorder" - technical jargon for prefering to be alone not to be confused with schizophrenia ie hearing voices and all that.
http://en.wikipedia.org/wiki/Asperger's_syndrome
http://en.wikipedia.org/wiki/Schizoid_p ... y_disorder

According to Wiki, one of the DSM (Damn Silly Manual) criteria for Asperger's specifically excludes schizophrenia, so it's hard to figure how a doctor who knows what they're talking about could say anyone has both.

And lastly I find posts easier to read if you double space your ideas. I find big unbroken blocks of text hard to read. I'm not the only one, that's why newspaper column text is narrow and broken up by white space. Press [enter] twice when you stop to think about what to write next.

And one day I will learn to edit my posts.

And no - the professionals do not agree completely between themselves what asperger's is let alone who has it.

There's this though it will just tell you if you're on the right track, it won't be definite one way or the other.
http://www.rdos.net/eng/Aspie-quiz.php

I understand how you feel. Getting a diagnosis might help put a finger on your experiences and put them in context. I know it helped me a lot. Also, you would be a good resource for your daughter. The problem is that there aren't many aspie resources in America, espcially for adults.

I ended up with ADD AS comorbid, so it's not entirely unheard of to have both. Sometimes aspies are misdiagnosed as schizophrenic and who knows what else. I know I went through over 10 different explinations until someone pinpointed what I was dealing with.

Good luck with you and your child!

Welcome to WP. Just one advice: Please split those sentences into paragraphs and make them as short as possible .

Thank you, I have been told, and to be honest, going back and trying to re-read that first post myself gave ME a headache! I should have reread it before hitting send

Hey, welcome.
Don't edit your posts, we're all friends here.
You aren't alone in the being made fun of. Happened to me all the way through school, which was a long time ago. I just decided to stick it out. But that was me.
Hope you like it here. Sounds like you're really cool. Post often. A lot of us have been through the same thing.
My kid is an Aspi. He's having a really rough time. He'll be okay.
I agree with Alex about a lot of people don't get a DX, but it might help you feel better.
Don't talk fast. Talk slow. and quietly. Makes people listen.
Good luck and welcome. It sounds like you're doing a hell of a good job!
Beentheredonethat

Hi!

Welcome to Wrongplanet!

I hope you enjoy posting here!

Hi Candy,

I couldn't read your post.

If you can please put spaces in after a few lines whether they are proper paragraphs or not it makes it easier for some people to read. To read that I think I would have to paste it in Word and put spaces in!

emc

Cut and paste and then replace ... with ... <p><p>

is approximately what I did. I'd repost it except its a little rude to do that since Candy wouldn't be able to delete the repost if she felt the need. Some forums let you edit so you could go back and put the spaces in, but I can't find the button for that here. at least we have (preview), that helps a lot.

I edited it to space it out, hope that helps...

Hi Candy

That's much easier. Maybe Emc will come back and read it now.

Has anything we wrote helped at all?

I'm part way reading Tony Attwood's book - it has lots of strategies in it for parents to help their children with friends, and some that will help the parent too.

I also found toastmasters very helpful - the idea might be frightening but they're there to teach you social skills in a friendly environment at your own pace with lots of immediate feedback (called evaluations). And most of what they do is written down in manuals - so you can read it through and get familiar with what is expected before you try it out.

If a toasties meeting is being run properly - there is actually a person whose job is to greet people when they arrive and make them feel welcome - especially new people. My friends said I was much easier to get along with after a few years of toastmasters (it has infinite levels of progress you can attempt if you want). I feel I am going to plug toastmasters to death in here.

yes, I actually replyed to alot of the things you said in your first responce post to me, but I realize somehow my reply didnt end up showing up... Maybe I will try again...

also, what is toastmasters?

Last edited by Candy on 06 May 2006, 10:17 am, edited 1 time in total.

Hi Candy

I've noticed some of my posts disappear too. Sometimes I think it is because when a few people reply at the same time – some of the messages get eaten. So if I'm good – I write my post up in notepad or word and then cut and paste it into the forum.

I think the relationships forum is for both – hooking up and for getting advice on relationships. It depends what you write if you start a new topic. I admit my own relationships haven't lasted long but I quite like living on my own. Other people like the advice I give out about relationships though.

Toastmasters – I could go on and on and on. I haven't rejoined since moving states – which is stupid of me since I can feel my social skills falling off from lack of practice. The official info is here – www.toastmasters.org – there is almost bound to be one near you. If there isn't people in the next nearest club will help you start one. There are set steps to follow to get a club up and running and if you follow the steps – it works.

Thats one good thing about toasties – everything comes with instruction manuals that are detailed and get improved every year. There is also a regular magazine with more info. So officially it is about learning to do "public speaking" in a friendly and supportive envirionment. For me it was also about learning to be "friendly and supportive". How to say the truth as I see it – but in a way that other people can accept hearing it.

So about the first thing you learn is something like
instead of saying "you did that wrong", say "I think what you say would be more effective if you said exactly what it is that would be right for you". Or "I like when you did this, I think your speeches would be even better if you did it more".

You also learn conversational skills or mini speeches in the form of something called "table topics", you learn how to phrase a question to get someone to discuss it instead of giving a one word answer. You learn which topics are difficult to discuss and which are easy. You also learn what you can do that will give you lots to talk about with other people. You learn how to bluff feeling comfortable – which leads happily enough to feeling more comfortable. You learn to tolerate some anxiety – I don't think I will ever be comfortable before a speech but I can trick myself into being blase about how well it goes, which calms me down a little. And once you are comfortable in front of a small group of people that will become your friends – because you are all in this together – you can extend your limits by competing or giving speeches at other clubs.

It's all entirely at your own pace – you are encouraged to proceed through the steps but you're not excluded if you don't want to do any of that. The initial book of ten speeches – can take a normal person a year, some people complete it in 10 weeks of an intense course called "speech craft". I took two years to do mine and never got round to doing any of the advanced speeches.

There's more – but I think this is a good place to stop. Though I could have stopped after "learning to be friendly and supportive".

Hello, and welcome to Wrong Planet.

I confess that I wasn't completley Potty Trained, until I was 3.5 Years Old. My Mom waited until I was a little past my Third Birthday, because she was afraid that I wouldn't be able to catch on. That was back in the Late 1970s, when most kids were trained by the age of 2.5.

I hope you enjoy it, here.

You can delete this, if you wish, Alex.