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2kids4me

Aspergers Support Thread

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I wanted to start this thread after realizing how many of us either have Aspergers, shadow Aspergers or know someone with an autistic spectrum disorder. My hope is that we can come here to boost each other, share strategies, good days bad days...strategies that went wrong (kind of like oops I'll never try THAT again) :rolleyes: .... to things that worked out wonderful..

Share the beauty of seeing the world differently, share you or your child's insights - however quirky! :D:)

My hope is that the thread continues along those lines but whatever direction it takes would no doubt be interesting. One thought - if you agree - is that if we want to discuss causes of Aspergers, that we start a separate thread so this one can be for "daily living" and coping ...if you know what I mean.

Sandy

This sound okay ?


Sandy

Type 1 diabetes - 1986

hypothyroid -1993

pernicious anemia

premature atrial beats

neuropathy

retinopathy

daughter is: age 15

central hypotonia and developmental delay

balance issues (rides an adult 3 wheel bike)

hypothyroid 1996

dermatographia - a form of angioedema 2002

celiac 2004 - by endoscopy

diagnosed Aspergers at age 7 - responded very well (HUGE difference) to gluten-free diet

recovered from Kawasaki (2003)

lactose intolerant - figured out in Oct/06

Gilberts syndrome (April/07)

allergy to stinging insects

scoliosis Jan 2008

nightshade intolerance - figured out April 2008

allergy to Sulfa antibiotics

son is 13

type 1 diabetic - 2003 diagnosed on his 9th birthday

celiac - 2004 by endoscopy

lactose intolerant - figured out Nov/06

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Aspergers and bedtime at our house...

My daughter has trouble getting to sleep at night; the average time is 1 1/2 - 2 hours of transition. I used to try all sorts of things, music, talking, reading to her... but in our situation, I was prolonging sleep even further ... because she still needed the same amount of quiet time after I finished reading or whatever. I had a clue one night when I asked her if she knew why she had trouble getting to sleep.... she replied “ the movies in my head keep playing”.... at about this time I was quickly running through psychiatric disorders in my head (a little knowledge is dangerous). LOL

I did a little reading and it was Temple Grandin's book that gave me a clue. Temple talks

about her unique method of recalling events. I had several discussions with my daughter about “the movies” and it dawned on me that she needs this time at night. I believe that this is the way she stores her memories of the day is by playback.... she relives the events of the day each evening and solidifies the memory and “stores them” in long term memory, similar to a record button on a videotape. Her record button doesn't click on until bedtime.

I have no way of confirming my theory but I have noticed that if she is really tired from a long day and does fall asleep right away - she asks me questions the following day and doesn


Sandy

Type 1 diabetes - 1986

hypothyroid -1993

pernicious anemia

premature atrial beats

neuropathy

retinopathy

daughter is: age 15

central hypotonia and developmental delay

balance issues (rides an adult 3 wheel bike)

hypothyroid 1996

dermatographia - a form of angioedema 2002

celiac 2004 - by endoscopy

diagnosed Aspergers at age 7 - responded very well (HUGE difference) to gluten-free diet

recovered from Kawasaki (2003)

lactose intolerant - figured out in Oct/06

Gilberts syndrome (April/07)

allergy to stinging insects

scoliosis Jan 2008

nightshade intolerance - figured out April 2008

allergy to Sulfa antibiotics

son is 13

type 1 diabetic - 2003 diagnosed on his 9th birthday

celiac - 2004 by endoscopy

lactose intolerant - figured out Nov/06

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Hi Sandy, thanks for starting this thread, it is a good idea. And I hope people who can't accept us and want to change us to be more 'normal' will just ignore this thread. I sure could use a little acceptance and helpful advice on how to traverse this jungle of NTs and their strange rules, rather than the constant criticism I usually face.

I am glad you figured out what your daughter needs at night. You're right, after reading those stories at bedtime, those then needed to be 'digested' on top of what happened during the day! After I go to bed, or sitting quietly (doing nothing and wasting my time in certain people's opinion) in the evening, the movies will be playing back the events of the day in my head, too. In colour and with sound no less, every word will be recalled, every little detail. Everything I didn't really understand will be mulled over, and sometimes, understanding will come in that quiet time.

If I don't get that peaceful, quiet alone time every day, I will stop functioning altogether after a few days. It is almost like my 'hard drive will crash'. I fall apart.

I went to a women's retreat today that our church put on. They talked me into going, saying they really wanted me there to get to know me better (I don't really know why). It really went from 9:00 AM until 4:00 PM. But because my husband and I are going to a Steve Green concert tonight (who is actually singing in a church not far from us), and I don't have the energy (physically or emotionally) to be around so many people all day, I didn't go until lunch time. Our pastor's wife was going to make sure I had something I could eat for lunch. She is the only person I trust to actually make sure I am safe.

Anyway, when I got there, it took a couple of minutes to find them. Then I saw the women (strangers among them, from other churches in the area as well), behind the glass of one of the doors. About 30 of them. It took a great deal of willpower to open the door and go in. I hate it when suddenly everybody looks at me! I felt like hiding.

I was going to put my jacket over the back of my chair (after I would decide where to sit), until somebody told me that I needed to hang it on the wardrobe downstairs! I felt so confused and dejected as I left again to hang up my jacket. I almost just kept going back out to my car to leave, without my bag which I left in the room. But I didn't, I went back in.

A couple of minutes after I sat down across from an acquaintance, they did a draw for three prices. I never win anything, so didn't really pay any attention. Until my name was called, I won the third price, a very nice little devotional! What a nice surprise.

I am not sure what I got out of the afternoon yet. I haven't had time to digest things, in about a week I'll know, I have to mull things over.

I had a nice chat with three women I know over lunch, who sat at my table (the only spot where there was still room). One is our worship director, and the other one a concert guitarist (classical). So, we have a few things in common, including music. And I met a very nice lady from Taiwan (who is from a different church). I really like her, and found out that our husbands ride the same bus to Toronto to work every day! It's a small world. I am actually contemplating inviting them over some time (which is not something I normally like doing), to get to know her better, that's how much I like her. Maybe I made a new friend. I don't make friends easily. But she is quiet and shy, and easy to be with.

Anyway, I guess I better check what else is new here, and get ready to go to the concert.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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thank YOU Ursula! :):)

You are the first person with Aspergers to confirm my approach with Kathryn and that I was on the right track for bedtime. A number of people have suggested in the past that I somehow got her wired up or let her play too much video games ( I limit it to an hour and nothing after 5pm) ...or that I should try over the counter sleep aides. I was always perplexed by people who seem more troubled than either Kathryn or I about her staying up late. She needs to, its as simple as that.

It sounds like you and this lady from Taiwan are match in terms of friendship. If she is a bit shy then perhaps she enjoyed your company just as much because you were easy to talk with and you had things in common.

helpful advice on how to traverse this jungle of NTs and their strange rules, rather than the constant criticism I usually face.

Well then, it will be a reciprocal relationship :) ...because you can help us understand the world of Aspergers. Myself - I feel trapped between both worlds, a shadow Asperger, understanding some parts of each world but not fully comprehending either.... doing well socially in some instances and blowing it totally at other times and feeling like an idiot.

Sandy


Sandy

Type 1 diabetes - 1986

hypothyroid -1993

pernicious anemia

premature atrial beats

neuropathy

retinopathy

daughter is: age 15

central hypotonia and developmental delay

balance issues (rides an adult 3 wheel bike)

hypothyroid 1996

dermatographia - a form of angioedema 2002

celiac 2004 - by endoscopy

diagnosed Aspergers at age 7 - responded very well (HUGE difference) to gluten-free diet

recovered from Kawasaki (2003)

lactose intolerant - figured out in Oct/06

Gilberts syndrome (April/07)

allergy to stinging insects

scoliosis Jan 2008

nightshade intolerance - figured out April 2008

allergy to Sulfa antibiotics

son is 13

type 1 diabetic - 2003 diagnosed on his 9th birthday

celiac - 2004 by endoscopy

lactose intolerant - figured out Nov/06

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Ok, since I'm the total newbie here... I wanted to share a little. I also wanted to ask about Shadow Asperger's - I've not heard of that, please enlighten.

From the moment Josh was born, he was not like any other baby I'd ever encountered. He was unusually quiet, very placid. He did not cry unless he was wet or hungry. I attributed it to the fact that he was an attached baby. (I learned all too quickly with my daughter that even attached babies can be colicky, fussy, and have the ability to suck the very life out of you!)

He had an odd pattern of development right from the get go. He never tried to do things, he either did them - or he didn't. It didn't take him days or weeks to learn to crawl or walk, once he made the decision to do it, he did it. He crawled at 11.5 months, and walked the day after his first birthday. When he potty trained... it was one day, and boom - done, though - he was 4 by that time. There was no babbling by 18 months, no hi's, bye's, mama, dada... nothing. He started speech therapy at 22 months, with a 0 word vocabulary. By 28 months, he was speaking in full and complex sentences. He absolutely baffled his therapist. It was around the time he started talking that we started noticing his heightened awareness of the things going on around him, sounds, movement, feelings... etc. He never slept much as an infant - always up early, always to bed very late - seeming to need significantly less sleep than others his own age. He was always taking everything in.... he was just soooo aware of everything.

When he started preschool, we started noticing the sensory issues much moreso than before, and we took him for an evaluation to find out why he was having tantrums all the time. He was diagnosed with a Sensory Processing Disorder, extreme tactile defensiveness, proprioceptive issues, oral defensiveness, vestibular issues, and sound... sound is still a BIG problem for him. He was reading and writing very early and had an odd fascination with numbers right from the get go. He did exceptionally well in school, but would melt down once the day had ended.

Just before he turned 5 our pediatrician recommended we take him for a full Autism/Asperger's evaluation. We did that... and the full panel told us that they did not believe he had Asperger's - but he was really too young to be diagnosed, and said "we might see you back here in a few years." He continued O/T for sensory issues, and started kindergarten. His IQ at 5 was higher than most averaged intelligence adults. But... he could not properly use utensils, could not tie his shoes, and other things that can usually be done by 5 year olds.

Fast forward to present day.... he recently scored in the 98th percentile on a measures of academic progress in math, and seems to grasp mathematical concepts with extreme ease. (Something I can NOT do) He's miles ahead of his classmates with regards to reading levels - and has only missed one spelling word his entire school career thus far. (I thought that was going to KILL him!!!) He's a major perfectionist and very competitive in sports. He's smaller and faster than everyone, and he can NOT handle it when the rules are not followed to a T. So, he is not often asked to play sports with the other kids. But, he doesn't get upset... he just goes off an occupies himself.

His teacher says he's a model child, the perfect student. When I expressed my fears to her....she did not dismiss them. She said that she does notice that he marches to the beat of his own drummer, but it doesn't affect him negatively in school. School is like glue for him... however, the glue doesn't hold through the car ride home, and usually by the time we get here.... the meltdown process has already begun.

The other night was the last straw, we dealt with a 4 hours meltdown in which he started kicking and hitting me. He punched his father... he cried, he whaled, he stomped, he rammed his head into the wall - repeatedly. He kept saying... "you hate me, you wish I'd just disappear." This was all incredibly heartbreaking, and that's when I went back and read the Mozart and the Whale thread over and over again. I called his pediatrician and started asking for recommendations, who in the world can help us? I went round and round with doctor after doctor, nurse after nurse, dead end after dead end. He's too old for a developmental pediatrician, this doctor has a wait list of 9 months, that doctor simply could not take a new patient. Then a friend recommended her son's psychologist to us, and on a whim I gave him a call. I spoke with his receptionist, and within an hour the doctor himself called me back. And, he got us right in.

There is sooo much more I could say... but, that's the gist of it. I am absolutely confident that this doctor is going to be the answer to our prayers. The thing that really made me realize he is the right doctor for us is the fact that he told me that the evaluation we had done before was performed by some of the best there are. However... when the best in this field and the best in that field are only looking for the issues that are within their field, they often miss stuff that is right in front of them, simply because they aren't looking for it.

So, hi everyone. My name is Kris... and I'm the mom of an Aspie.


Jayhawkmom -

Mom of three....

Jay - 11

Bean - 8

Ian - 3

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Shadow Aspergers is a term that describes someone with a few traits or mild traits that would not set them apart from a "normal person" (NT, or neurotypical) but perhaps be called reclusive, introvert or reserved.... but share characteristics of Aspergers

I hate crowds and loud noises bother me but I like listening to loud music.

I totally understand some of the things Kathryn does because I react the same way - it wasnt til the last few years that I realized - I understand her so well because I see me. I remember growing up and figuring I came from another planet (seriously) because I had so much trouble navigating the social world... and wondering why people lied, or were sooo worried about their clothing.

Yet I can make eye contact and I can understand idioms, I like practical jokes and other things that a person with Aspergers would not enjoy.

You cannot be a "little pregnant" :D ....but you can be a little bit Aspie".

Good to meet you!

Sandy.. another proud mom of an Aspie


Sandy

Type 1 diabetes - 1986

hypothyroid -1993

pernicious anemia

premature atrial beats

neuropathy

retinopathy

daughter is: age 15

central hypotonia and developmental delay

balance issues (rides an adult 3 wheel bike)

hypothyroid 1996

dermatographia - a form of angioedema 2002

celiac 2004 - by endoscopy

diagnosed Aspergers at age 7 - responded very well (HUGE difference) to gluten-free diet

recovered from Kawasaki (2003)

lactose intolerant - figured out in Oct/06

Gilberts syndrome (April/07)

allergy to stinging insects

scoliosis Jan 2008

nightshade intolerance - figured out April 2008

allergy to Sulfa antibiotics

son is 13

type 1 diabetic - 2003 diagnosed on his 9th birthday

celiac - 2004 by endoscopy

lactose intolerant - figured out Nov/06

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I hate crowds and loud noises bother me but I like listening to loud music.

Yet I can make eye contact and I can understand idioms, I like practical jokes and other things that a person with Aspergers would not enjoy.

Holy geez.... you just described me!!

And, yea... Joshua is very literal! I had to laugh at myself for asking him such a silly question the other night. We were at his school for open house and my husband had asked what classrooms were downstairs. Joshua replied, "The computer labs are down there." I turned and asked, "Well, how do you get down there?" Josh looked at me with a very puzzled look and said, "The stairs, mom." :rolleyes:

I obviously didn't know where the stairs were located, which is why I asked - and he didn't "get" that I was asking where the stairs were... not literally "HOW" do I get down there. My husband and I both giggled, but he had no idea what was so funny. =(


Jayhawkmom -

Mom of three....

Jay - 11

Bean - 8

Ian - 3

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:D:D

Kathryn got mad at me when I asked her if she: got out on the wrong side of the bed (because she was cranky)

She replied : My bed is against the wall!!

Yup..literal

Kathryn figures that if someone "gets cold feet"... they should just put socks on :)

Sandy


Sandy

Type 1 diabetes - 1986

hypothyroid -1993

pernicious anemia

premature atrial beats

neuropathy

retinopathy

daughter is: age 15

central hypotonia and developmental delay

balance issues (rides an adult 3 wheel bike)

hypothyroid 1996

dermatographia - a form of angioedema 2002

celiac 2004 - by endoscopy

diagnosed Aspergers at age 7 - responded very well (HUGE difference) to gluten-free diet

recovered from Kawasaki (2003)

lactose intolerant - figured out in Oct/06

Gilberts syndrome (April/07)

allergy to stinging insects

scoliosis Jan 2008

nightshade intolerance - figured out April 2008

allergy to Sulfa antibiotics

son is 13

type 1 diabetic - 2003 diagnosed on his 9th birthday

celiac - 2004 by endoscopy

lactose intolerant - figured out Nov/06

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:D:D

Kathryn got mad at me when I asked her if she: got out on the wrong side of the bed (because she was cranky)

She replied : My bed is against the wall!!

Yup..literal

Kathryn figures that if someone "gets cold feet"... they should just put socks on :)

Sandy

Now THAT is funny! It took me a long time to understand those little sayings (and somebody has to explain what they mean the first time I hear them). If somebody uses one I haven't heard before, I take it literal, and make it obvious by answering or asking something 'stupid', and my kids will groan, roll their eyes, and go, "Oh, Mom, don't you know what that means?" And I'll have to tell them that I don't. I embarrass them regularly, because I'll say strange things in public, too. :blink:

What bugs me is, when I say something they deem inappropriate, and they won't explain why it is inappropriate (at least in their opinion). Like a few months ago, when my second daughter and her husband were visiting. I said something about having had diarrhea all day, and Karen said, "Mom, you can't say that." And I asked her, "Why not?" And she answered, "You just can't". Well, that is NOT helpful to me.

Apparently, I still haven't figured out which subjects are appropriate for conversation, and which ones aren't. I guess I never will. I console myself with thinking that soon people will think of me as that 'cute, naive old lady', who is allowed to say whatever she wants. :P

I've started taking violin and recorder lessons just recently. I am a complete beginner on the violin, but on at least the soprano recorder I'm at a grade seven to eight conservatory level. I really like my recorder teacher. He is about my age, and his parents were from Austria, and he knows quite a bit of German.

My kids have accused me of flirting with various men before (my dentist, chiropractor, friends). I don't have the slightest clue what they're talking about. I don't know how to flirt, and why you would want to!

So, to be safe, and to avoid potential misunderstandings, I sent Mike (my recorder teacher) an e-mail, explaining about Asperger syndrome and Tourette syndrome. And letting him know, that if he feels I may be flirting with him, it wouldn't be intentional, and wouldn't mean that at all.

Anyway, I had a lesson a couple of days ago. He said, "Ursula, I got your e-mail. Don't worry, everything is fine, I understand, my son has Tourette Syndrome. I am just so glad I finally have a student who actually can play the recorder!"

We had a lot of fun during that lesson. I am learning neat stuff, fancy trills and slides, and new notes. We were playing Bach, Haendel, Haydn and Mozart. I am hoping I will be able to play either the Brandenburg Concerto No. 2, or No. 4 by Johann Sebastian Bach at the adult recital in April. But I don't think I'll play the violin, I am not good enough on that for any public performance yet (and won't be for a long time to come).


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Yet I can make eye contact and I can understand idioms, I like practical jokes and other things that a person with Aspergers would not enjoy.

You are describing my 11-year-old son today, who presented as VERY autistic when with anyone besides for my husband and me when he was 3 years old.

He now CAN make eye contact (usually doesn't, but now he CAN), he loves practical jokes (doesn't always understand timing, though, or when they might not be appropriate, and we taught him idioms. He still processes things "his" way, but can translate back and forth when he needs to except when he is tired.

And looking back, I definitely had (and probably still have) shades of Aspie-ness (rhymes with happiness!).

Re: sleep issues: he didn't fall asleep alone or sleep through the night by himself until he was 8. One of us had to lay down with him. We thought he needeed a parent in bed with him, but he did sleep better when we put his little brother in bed with him. What he liked best, though, was when the dog across the street spent a week with us, and slept all night with him (that was when he was 8). After that, we trained one of the cats to sleep at least part of the night with him.

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Shadow Aspergers is a term that describes someone with a few traits or mild traits that would not set them apart from a "normal person" (NT, or neurotypical) but perhaps be called reclusive, introvert or reserved.... but share characteristics of Aspergers

I hate crowds and loud noises bother me but I like listening to loud music.

I totally understand some of the things Kathryn does because I react the same way - it wasnt til the last few years that I realized - I understand her so well because I see me. I remember growing up and figuring I came from another planet (seriously) because I had so much trouble navigating the social world... and wondering why people lied, or were sooo worried about their clothing.

Yet I can make eye contact and I can understand idioms, I like practical jokes and other things that a person with Aspergers would not enjoy.

You cannot be a "little pregnant" :D ....but you can be a little bit Aspie".

Good to meet you!

Sandy.. another proud mom of an Aspie

Sandy thanks for starting this thread. I read all the threads you've started regarding aspergers with great interest. I came to realise I am a shadow asperger. I never even knew what asperger was until this year. But it describes me in so many ways. I don't want to take alot of time to describe anything at length here but in response to the sleep thing I have to listen to a radio program in order to fall asleep. It distracts me and I won't go over every conversation I had during the day. Otherwise I would and I would then wonder if I was harsh or just beat myself up because things didn't go perfect somehow. I have a C.D/radio player and I put the head phones under my pillow and turn the volume on high and I can hear it through the pillow.

There is a christian program called Unshackled that I listen to because its a real life story about how people and their conversion to christianity. Sometimes music helps too if the beat isn't to fast. The hardest thing for me is I'm going through hormonal changes now. Im 49 so I'll wake up alot during the night. If I had a stressful day I could lay awake for hours because my mind will be busy. I won't turn the radio on during this time because it doesn't seem to work as well. Why I have to figure things out I don't know. The worst nights are when I've started on something and couldn't finish it. For instant the other night I started to research something I found out I'm intolerant to. When this happens my brain lights up and I have a hard time sleeping because I have so much information in my head and I have to digest it all. I think others might shelve it away until morning but this is hard for me.

When I fell asleep I kept dreaming of going to the health food store and the man at the store showed my a new freezer case that had ice cream in it. I asked for a big scoop of the ice cream and I was shoving it into my mouth like it was the first meal I had in days. He then showed my a gluten free cheescake and I asked for a big piece of it and ate it right there in the store and couldn't get enough of it. I remember eating something else when I woke up and wondered what that dream meant. I usually try to figure out my dreams to see if they mean something especially when they are so weird. I realized the cake and icecream is the information and I'm shoving it in trying to take it all in. I realized I have to pace myself with info just like with food.

I'll have to stop the practice of reading right before bed. I hate watching t.v. though, its so bad.

Great thread and I'm sure I'll learn alot.

GAil


Gluten Free since Jan. 06

Gluten intolerant. DQ 0301 DQ 0602

Lactose intolerant.

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Now THAT is funny! It took me a long time to understand those little sayings (and somebody has to explain what they mean the first time I hear them). If somebody uses one I haven't heard before, I take it literal, and make it obvious by answering or asking something 'stupid', and my kids will groan, roll their eyes, and go, "Oh, Mom, don't you know what that means?" And I'll have to tell them that I don't. I embarrass them regularly, because I'll say strange things in public, too. :blink:

What bugs me is, when I say something they deem inappropriate, and they won't explain why it is inappropriate (at least in their opinion). Like a few months ago, when my second daughter and her husband were visiting. I said something about having had diarrhea all day, and Karen said, "Mom, you can't say that." And I asked her, "Why not?" And she answered, "You just can't". Well, that is NOT helpful to me.

Apparently, I still haven't figured out which subjects are appropriate for conversation, and which ones aren't. I guess I never will. I console myself with thinking that soon people will think of me as that 'cute, naive old lady', who is allowed to say whatever she wants. :P

I've started taking violin and recorder lessons just recently. I am a complete beginner on the violin, but on at least the soprano recorder I'm at a grade seven to eight conservatory level. I really like my recorder teacher. He is about my age, and his parents were from Austria, and he knows quite a bit of German.

My kids have accused me of flirting with various men before (my dentist, chiropractor, friends). I don't have the slightest clue what they're talking about. I don't know how to flirt, and why you would want to!

So, to be safe, and to avoid potential misunderstandings, I sent Mike (my recorder teacher) an e-mail, explaining about Asperger syndrome and Tourette syndrome. And letting him know, that if he feels I may be flirting with him, it wouldn't be intentional, and wouldn't mean that at all.

Anyway, I had a lesson a couple of days ago. He said, "Ursula, I got your e-mail. Don't worry, everything is fine, I understand, my son has Tourette Syndrome. I am just so glad I finally have a student who actually can play the recorder!"

We had a lot of fun during that lesson. I am learning neat stuff, fancy trills and slides, and new notes. We were playing Bach, Haendel, Haydn and Mozart. I am hoping I will be able to play either the Brandenburg Concerto No. 2, or No. 4 by Johann Sebastian Bach at the adult recital in April. But I don't think I'll play the violin, I am not good enough on that for any public performance yet (and won't be for a long time to come).

What I like about you Ursula is your so full of adventure. I always say I'd like to learn how to play an instrument but you actually do it. Also you don't seem to let your daughters comments bother you which is good. I get hurt when someone corrects me and so I probably have trained them (unintentionally) to not say anything but I never learn that way! I have to take it and let it roll off my back then maybe learn from it.

Gail


Gluten Free since Jan. 06

Gluten intolerant. DQ 0301 DQ 0602

Lactose intolerant.

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Sandy thanks for putting a name to my sons Aspergers. Shadow Aspergers fits him well. Full Aspergers never quiet fit him. He in not literal. His favorite channel is Comedy Central. His favorite type of comedy is satire.

His major area of deficit is people skills. He had to be taught to make eye contact and read body language. He does much better in structured situations where he knows what is going to happen and transitions are predicable. He is now eighteen and it has been a number of years since we have seen meltdown but when he was younger meltdown happened regularly, mainly at school and related to school work. He had a one on one aide from the third grade through the eight grade. Each year he improved but it took medication, extensive social skills training, and extensive behavior modification(positive reinforcement).

Today he is comfortable in his skin according to his psychologist. He has acquaintances, not friends. Group school projects are still a challenge. Although we encouraged him to join a club at school he was never interested.

From my perspective raising a child with Aspergers has meant leaving the standard parenting box and determine what worked, what didn't and adapt as required.


Phyllis

Gluten Free - 30 years

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Sandy,

I too want to say thank you for starting this thread - this the thing that I've been most desiring lately! I also want to say that I think that you and (the) other parents of Aspies here who have made sure that your children received whatever help they needed are wonderful and they are blessed to have you as parents.

I did not have that, unfortunately, and even when it became much too obvious that something was wrong - when I had my first total breakdown at 17 - and all my teachers at school saw me slide from an A student to one who would start to cry and shake if I even attempted the things that used to be nothing to me; my mom was begged to get me help, she refused.

I had always known that I was different; from my earliest memories I always felt alone, invisible and confused by the world. I still do/am. I never fit in, was always teased and picked on especially by children who would pretend to be my friends to get me into trouble - and the adults/teachers would always believe them, so from early on I determined not to trust people. It got way worse in adolescence, especially as I would always say or ask something that was thought of as weird or inappropriate - and, as Ursa said previously, no-one explains way, because no-one would think that it was possible that you really didn't understand what was going on... :angry:

One of my escapes was reading - voraciously - and I've always loved English Lit., so I may have had a better understanding than most of idioms and different sayings...they were drilled into our little minds... and I understand some of the wordplay and other things as well (big Shakespere and Edgar Allen Poe lover; they have such a mastery of the language that it is unreal!). When it comes to what people say to me or when they're joking around, however, I take them literally and it confuses the hell out of me.

I am very light, sound and smell sensitive, dislike being touched / don't understand what the deal about it is, and though there has been some improvement over the years, I am still very naive ( I'm almost 35). I cannot read people's intentions or motives - just doesn't happen, and I've been in some very dangerous situations because of it; I was almost raped by someone I actually trusted a couple years back while I was very sick and helpless - he was also a cop and I knew he was armed... not a good place to be in, yes? I've told some of my present therapist some of the other episodes that have occured, and she could only wince and look at me in horror...

Because the world at large sees me 'function' I am thought of as pretty normal-ish but aloof and sometimes rude. They don't see that I am exhausted by the simplest social encounters or that I get so frazzled and overwhelmed by everyday stuff that I literally zone out for hours in my room at the end of the day... that the slightest variation in routine scares the living daylights out of me!!!

I am in the process of pursuing a diagnosis ** sigh** and it is stressing me out. I'm also reading Tony Attwood's newest book, The Complete Guide To Asperger's Syndrome, and I swear that, one, he can read my mind, and two, that I will have half the book underlined by the time that I am finished!

I'm sorry this post is so long...


Gluten-free since 10/05 - Positive dietary response with Doctor's validation! - Debilitating migraines, constant dizziness and lightheadedness gone; anxiety & panic attacks, depression, agoraphobia and extreme exhaustion considerably lessoned

Dairy/Casein Intolerant

Soy, Cabbage, Sugar, Peanut, Shellfish, Caffeine, Egg, Potato and Tomato allergies / intolerances

Sporadic reactions to: Poultry

Avoiding all preservatives and additives

Also Multiple Chemical/Environmental Sensitivities

Mitral Valve Prolapse

Pulmonary Embolism - 1999

Dance, when you're broken open.

Dance, if you've torn the bandage off.

Dance in the middle of fighting.

Dance in your blood.

Dance, when you are perfectly free.

RUMI

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I'm sorry this post is so long...

Heck, make it as long as you need to! :)

In this spot in cyber space , you will be appreciated for your unique perspective and insight.

It is a place to come and share your story.

It is a place where you will find you are not alone.

I have found it helps me as well....

You are also not alone in being in dangerous situations...sadly the girl/woman with Aspergers cannot read the ill intentions of some men and have been raped. Probably classifed as "date rape" ...but I have never understood the difference - rape is rape. I plan to do all I can to teach Kathryn, to give her the knowledge to hopefully avoid those situations....but NT men can be very cunning and have fooled many women - NT or Asperger, naive or not.

The one thing for certain - no man affected by Aspergers has assaulted a woman ... that I have ever heard.

I hope you watch Mozart and the Whale as they talk about that early on in the film.

Sandy


Sandy

Type 1 diabetes - 1986

hypothyroid -1993

pernicious anemia

premature atrial beats

neuropathy

retinopathy

daughter is: age 15

central hypotonia and developmental delay

balance issues (rides an adult 3 wheel bike)

hypothyroid 1996

dermatographia - a form of angioedema 2002

celiac 2004 - by endoscopy

diagnosed Aspergers at age 7 - responded very well (HUGE difference) to gluten-free diet

recovered from Kawasaki (2003)

lactose intolerant - figured out in Oct/06

Gilberts syndrome (April/07)

allergy to stinging insects

scoliosis Jan 2008

nightshade intolerance - figured out April 2008

allergy to Sulfa antibiotics

son is 13

type 1 diabetic - 2003 diagnosed on his 9th birthday

celiac - 2004 by endoscopy

lactose intolerant - figured out Nov/06

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Heck, make it as long as you need to! :)

In this spot in cyber space , you will be appreciated for your unique perspective and insight.

It is a place to come and share your story.

It is a place where you will find you are not alone.

I have found it helps me as well....

You are also not alone in being in dangerous situations...sadly the girl/woman with Aspergers cannot read the ill intentions of some men and have been raped. Probably classifed as "date rape" ...but I have never understood the difference - rape is rape. I plan to do all I can to teach Kathryn, to give her the knowledge to hopefully avoid those situations....but NT men can be very cunning and have fooled many women - NT or Asperger, naive or not.

The one thing for certain - no man affected by Aspergers has assaulted a woman ... that I have ever heard.

I hope you watch Mozart and the Whale as they talk about that early on in the film.

Sandy

Thanks ;)

Even here sometimes I wonder what I 'should' and 'should not' say... :P

That incident I spoke about was even more shattering to me because the person was not only someone I'd known for years, but I was also at the time his children's live-in nanny... and he was also a minister as well as being a cop :ph34r:

I did manage to finally get Mozart and the Whale, but my best friend's watching it tonight - there are 2 DVD players here but no-one knows how to work them - so goodness knows when I'll finally see it. I always make sure that any guy I go out with - and it doesn't happen often - meets my best friend; she can always sniff out the rotten apples!!!

I'm glad Kathryn has you to help teach her...


Gluten-free since 10/05 - Positive dietary response with Doctor's validation! - Debilitating migraines, constant dizziness and lightheadedness gone; anxiety & panic attacks, depression, agoraphobia and extreme exhaustion considerably lessoned

Dairy/Casein Intolerant

Soy, Cabbage, Sugar, Peanut, Shellfish, Caffeine, Egg, Potato and Tomato allergies / intolerances

Sporadic reactions to: Poultry

Avoiding all preservatives and additives

Also Multiple Chemical/Environmental Sensitivities

Mitral Valve Prolapse

Pulmonary Embolism - 1999

Dance, when you're broken open.

Dance, if you've torn the bandage off.

Dance in the middle of fighting.

Dance in your blood.

Dance, when you are perfectly free.

RUMI

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Sandy, you're right about AS women being very susceptible to being raped. It happened to me when I was about 22, and it's a miracle that I didn't get raped more often than that, as I got close many times before that. I simply can't sense danger at all. Strangely, I can for my children, but not for myself.

The thing that is worse than being raped is, that my mother knew it was going to happen and didn't warn me (because when I saw her afterwards, she asked me, "Did it happen?" And when I said 'yes', she said, "Oh well, you'll get over it"). She WANTED it to happen! She was severely mentally disturbed, I can see that now. After the war she was raped by a black American soldier. It seems that she always tried to make my sister and me have all the same awful experiences she had. And because my sister is even more autistic than me, and many times more naive (if that is possible :rolleyes: ), she'd fall into my mother's traps just as easily as me.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Thank you to all who have shared their life experience thus far. This is amazing ... so much in common. Ursula - it sounds like your mom definitely had mental health issues, the trauma she endured scarred her .... and I am so sorry that she wasnt there for you when you could have used and "intact" mom to hold you, to comfort you...it must have been such a difficult time.

I am proud to know you all, even if only in cyber space.

I had a distant mother, when I moved out at 17, she told me "her job was done" and if I wanted to visit I was welcome, but I was not to expect to move back home and live there.

I want to be more than that for Kathryn. I want her to know that I will always be her mother and that the "job" is never done.

Sandy


Sandy

Type 1 diabetes - 1986

hypothyroid -1993

pernicious anemia

premature atrial beats

neuropathy

retinopathy

daughter is: age 15

central hypotonia and developmental delay

balance issues (rides an adult 3 wheel bike)

hypothyroid 1996

dermatographia - a form of angioedema 2002

celiac 2004 - by endoscopy

diagnosed Aspergers at age 7 - responded very well (HUGE difference) to gluten-free diet

recovered from Kawasaki (2003)

lactose intolerant - figured out in Oct/06

Gilberts syndrome (April/07)

allergy to stinging insects

scoliosis Jan 2008

nightshade intolerance - figured out April 2008

allergy to Sulfa antibiotics

son is 13

type 1 diabetic - 2003 diagnosed on his 9th birthday

celiac - 2004 by endoscopy

lactose intolerant - figured out Nov/06

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Wow. I don't even know what to say after reading some of these posts. I will add... I was also part of the crowd who's mom was "different." My mom was just out of high school when I was born, and my father was in the military - I believe I was probably a "shipping out" baby, though I have no proof of that. From the get-go - I was unwanted, and my mother made sure I knew it.

I grew up watching her lie, cheat, steal, and destroy other people's lives. Finally, when I was in 6th grade, my father said he'd had enough....and told her to leave, and then told her that there was no way in the world she was taking his children. She informed him how very much she didn't want us right in front of our faces. (Ain't she a gem?) When I graduated from high school, she was the same age I am now... sitting here with my 3 children, ages 8, 5, and 18 months. Crazy.

My grandmother passed away in 2003 - and since that time, my mom has decided that she wants to be my best friend. I get along with her and I am fine and civil. I don't want my children to grow up knowing the pain she caused me and the resentment I have toward her. They only see her once every few years (she NEVER comes to visit - and the last time I was home, for over a week - she spent 10 minutes with them) so it's not like they "know" her.

From the moment I found out I was pregnant with my first child I knew that I would be a MUCH better mother than what I had... and I've made it my life's mission to be such. I'm FAR from perfect, but I do believe that no matter what the circumstance, my children - all 3, know how very much they are loved.


Jayhawkmom -

Mom of three....

Jay - 11

Bean - 8

Ian - 3

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Well, my mom was severely emotionally abused as a child (her dad made it very clear that he only wanted boys and had no use for girls, and pretty much told her to stay out of his way.......she had four brothers), then, when she was a teenager, it looks like he sexually abused her (she said something to a sister-in-law once).

During the war she was once late going into the basement of her apartment building (she wasn't living at home) when there was an alarm, and only one spot was still available, by the wood stove. Somehow everybody thought it was the most dangerous spot, because of the chimney going through the ceiling.

It ended up being the safest spot. They got hit by a bomb, and she was the only survivor. All around her people had been blown to bits, with body parts everywhere. It took two days before she was found and dug out. And then the idiots who found her wanted her to identify her neighbours for them! No counseling, she wasn't taken to a hospital or anything. She wandered the streets of Hamburg for two days, hardly knowing where she was. Her nerves (and I think her mind also) never recovered from this.

And then, when she was 20, her mother died of stomach cancer (I suspect she had celiac disease). Her father forced her to move back home, give up her job (she was a nurse) to look after him and her younger brothers, without even giving her an allowance. Then, when he found another woman (five years older than my mother) and married her, they kicked my mother out, as she wasn't needed any more.

Not only that, her stepmother took her inheritance from her mother! All the jewelry that had been handed down from generation to generation on her mother's side, and the precious real linen and beautiful china that was in her hope chest. She exchanged them for cheap things, because the other ones 'were too good' for my mother and her plumber (low class, according to them) husband.

She never got over what happened to her. But worse, she wanted my sister and me to have it as terrible as her, it seemed (we have six brothers). We heard frequently from my mother, that she wished she had only boys, because they were so much easier to raise.

She stopped both my sister and me from learning the jobs we wanted (because her father would not allow her to become a doctor, because an education was wasted money for a girl, since she gets married anyway). My brothers all were left alone to choose the occupation they felt was right for them.

Christa wanted to become a neonatal nurse, but she forced her to apprentice with a pastry baker (or whatever that is called in English). The flying flour made her very ill (I believe she has celiac disease, but won't admit it), so she gave up her apprenticeship. For over thirty years she could never hold a job, none of them fit her.

I wanted to be either a pediatric nurse or a preschool teacher. Again, I was forced to apprentice in an office instead (to learn what here would be a college course, managing an office). Those three years were some of the worst ones of my life. I got the diploma, but afterwards I NEVER wanted to work in an office again. I hated the work, and I was bullied to death by the other women.

Anyway, I better go and get ready for my babysitting job. If I am late, the dad will be late for work.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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I simply can't sense danger at all.

The thing that is worse than being raped is, that my mother knew it was going to happen and didn't warn me (because when I saw her afterwards, she asked me, "Did it happen?" And when I said 'yes', she said, "Oh well, you'll get over it").

Ursa, my mouth dropped open when I read your post... I'm so sorry...I had something similar happen to me as well.

My mother's youngest brother molested me when I was about six or so, and threatened me with grevious bodily harm if I told anyone. I took him seriously. Years later she found out, and she asked me why I didn't tell her earlier. Hel-llooooo! What part of being threatened do you NOT understand??? (He was/is tremendously mentally unstable) Then comes the best comment ever that has seared itself into my memory," Well, you're a girl, so you should expect that to happen." :blink:

My mother's parents - and I use that term very loosely - were freaking maniacs. From the little one of my aunts and my mother told me, all eleven children were horribly emotionally and physically abused; I even saw a bit of it myself, actually - Pa whipping the youngest boy with a doubled-up garden hose unmercifully. The children basically took care of themselves, the older ones taking jobs and raising the younger ones. My mother found herself at 12-13 cooking for a household of 13 people.

For whatever reason, Ma took it upon herself to make my mother's life a living hell. When she had her first period and went to her not knowing what it was, Ma accused her of having sex with men and threw her out of the house; a female pastor from the next neighbourhood took her in and raised her after that.

My mother and I have never been close; she almost died having me, so I'm told, and an older sister moved in with us briefly to help take care of me while she recovered - I became close to her. I was Daddy's little girl, and when he left to study overseas when I was 5 my world ended. I'm an only child, and and I've always said that life with her was like a Venusian and Martian trying to co-habitate without tranlators. She was the most controlling, authoratative person who destroyed me with her withering looks and catty comments...when she bothered to actually talk to me it was an order or something sarcastic. She talked to our dog more than she talked to me! Everyone else absolutely loved her - and still do, she is so sweet to other people - but when it came to me :huh: not exactly the best environment for an extremely sensitive child/ adolescent...

Apparently I also am the 'splitting' image of my Dad who has now been missing for the last 22 years. Well, I'm not the one responsible for what or who I look like!!!!!

One thing I will never forget... I loved reading, and by the age of 11 had amassed a huge collection of books and comics, many of them series / serials. I knew and loved every single one like an old friend; they were very precious to me. We moved, and when I went to find my books, she told me that, " All those books were too much trouble to move, so I gave them away"... ( to a girl who lived in our old neighbourhood). talk about ripping my heart out! Plus I wasn't allowed to bring my cat with me either, so I had to leave her behind...

I moved out of the house when I was 23 - I had to get the heck away from her - and I did not just left the house, I left the country! Scared and imature as I was, I knew that If I didn't put as much space between me and her as possible that I would seriously lose my mind. It's been extremely hard for me, but I could not stay around her.

She's been having a lot of health issues herself lately ( I suspect Celiac with a lot of the complications), and wants us to be 'closer'. I get panic attacks just thinking of writing her, and I haven't called in years. I have progressed to the point where I can actually send a card or short note every now and then, but that's about it...

Okay, that's all I can manage for now ;) , so I'll call it a night...


Gluten-free since 10/05 - Positive dietary response with Doctor's validation! - Debilitating migraines, constant dizziness and lightheadedness gone; anxiety & panic attacks, depression, agoraphobia and extreme exhaustion considerably lessoned

Dairy/Casein Intolerant

Soy, Cabbage, Sugar, Peanut, Shellfish, Caffeine, Egg, Potato and Tomato allergies / intolerances

Sporadic reactions to: Poultry

Avoiding all preservatives and additives

Also Multiple Chemical/Environmental Sensitivities

Mitral Valve Prolapse

Pulmonary Embolism - 1999

Dance, when you're broken open.

Dance, if you've torn the bandage off.

Dance in the middle of fighting.

Dance in your blood.

Dance, when you are perfectly free.

RUMI

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all I can say...is sometimes people rip up their parent cards with their behavior...and then they come back into their adult children's lives..wanting to be closer? :blink:

You have every right to determine who is in your life.

All you are "obligated to do" is send a card or note...and only because you are classy person.

If she guilt trips you into seeing her becasue she has no one else to be close to...then she is still manipulative IMHO.

Sandy


Sandy

Type 1 diabetes - 1986

hypothyroid -1993

pernicious anemia

premature atrial beats

neuropathy

retinopathy

daughter is: age 15

central hypotonia and developmental delay

balance issues (rides an adult 3 wheel bike)

hypothyroid 1996

dermatographia - a form of angioedema 2002

celiac 2004 - by endoscopy

diagnosed Aspergers at age 7 - responded very well (HUGE difference) to gluten-free diet

recovered from Kawasaki (2003)

lactose intolerant - figured out in Oct/06

Gilberts syndrome (April/07)

allergy to stinging insects

scoliosis Jan 2008

nightshade intolerance - figured out April 2008

allergy to Sulfa antibiotics

son is 13

type 1 diabetic - 2003 diagnosed on his 9th birthday

celiac - 2004 by endoscopy

lactose intolerant - figured out Nov/06

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after looking through this thread, it sounds like so many people could be aspies that it doesn't even sound like a problem, just a difference. i have wondered if i and my son could have this condition---but ursula once directed me to a test for it and i didn't fit the profile.

i have a question for you all about aspies and the gluten free diet. if you are using this to help treat asperger's, do you need to be as strict about cross contamination as someone who is celiac, or do you just need to follow the gluten free diet as closely as possible to see benefits. i know a couple of people that are dealing with this with their children and was hoping to pass some info on to them. are there any good websites that you could recommend?


Christine

15 year old twins with celiac, diagnosed dec. 2005

11 year old daughter with celiac diagnosed dec 2005

17 year old son with celiac gene

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i have a question for you all about aspies and the gluten free diet. if you are using this to help treat asperger's, do you need to be as strict about cross contamination as someone who is celiac, or do you just need to follow the gluten free diet as closely as possible to see benefits. i know a couple of people that are dealing with this with their children and was hoping to pass some info on to them. are there any good websites that you could recommend?

Chrissy, the fact is, that for some reason autistic people are more prone to having a gluten intolerance than NTs (just like people with Down Syndrome are more likely to have celiac disease as well..... it's a genetic thing, obviously). Which would account for the large number of Aspies here. Therefore, any autistic people who are helped by a diet without gluten and/or dairy likely have severe problems with both, and need to be strict about staying away from them.

On the other hand, I obviously have a huge problem with gluten, but the diet is not helping me be any less autistic. Still, I find that emotionally I am more stable on a gluten-free diet. Plus, of course, I feel physically much better.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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after looking through this thread, it sounds like so many people could be aspies that it doesn't even sound like a problem, just a difference

It is a difference to be sure, but an Aspie has social impairment that causes difficulty in school settings, social settings ...you name it. It impacts how they learn, since the traditional teaching methods can compound issues. People with Aspergers have literal interpretations of things, abstract concepts are difficult. My daughter is a whiz in math and spelling - because words are spelled the same every time, once you learn the word, math equations have logic and are repeatable. But ... when asked to write a story.... that is very difficult for her, the storyline is disconnected, the sequence of events is jumbled...

Board games are difficult because there so many "rules" and the end result is different every time. Team games are a challenge because everything happens so fast and you have to make quick decisions in new situation each time - playing on a different field, a different team , in different weather....

Kathryn figures they should just give everyone a ball so they don't fight over it. Yes it's cute... but that demonstrates her confusion over what it's all about.

Time is abstract - think about that. what does 10 minutes mean? Kathryn knows if you say - please be ready to go by 2:10.... but will not be ready if you say " be ready in 10 minutes".

It impacts school and later work related issues.

It is a difference, but not a subtle difference.

It isn't that so many people are Aspies, it is that Aspies and their families are responding to the thread. There are 12,000 members ( I think?) and if you do the math, there are only a small percentage on this thread.

Sandy


Sandy

Type 1 diabetes - 1986

hypothyroid -1993

pernicious anemia

premature atrial beats

neuropathy

retinopathy

daughter is: age 15

central hypotonia and developmental delay

balance issues (rides an adult 3 wheel bike)

hypothyroid 1996

dermatographia - a form of angioedema 2002

celiac 2004 - by endoscopy

diagnosed Aspergers at age 7 - responded very well (HUGE difference) to gluten-free diet

recovered from Kawasaki (2003)

lactose intolerant - figured out in Oct/06

Gilberts syndrome (April/07)

allergy to stinging insects

scoliosis Jan 2008

nightshade intolerance - figured out April 2008

allergy to Sulfa antibiotics

son is 13

type 1 diabetic - 2003 diagnosed on his 9th birthday

celiac - 2004 by endoscopy

lactose intolerant - figured out Nov/06

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