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Message Board > Miscellaneous > New diagnosis for DS ( Moderated by Deepika, EleanorSews, CynthiaSue)

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New diagnosis for DS
officially labeled a child with Aspergers
Larisa
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Larisa
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VA USA
Member since 7/15/05
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Date: 4/14/11 8:15 PM

Ok, since we have such a wealth of knowledge in this group, I figured I'd post here and ask for direction....the doc gave me a folder with some decent sources, but I was hoping that there would be someone with real life experience that could give me some advice.

So....please give me some help here....

------
research associate in the field of child development, married to an engineer

I am woman, I am invincible, I...am...TIRED!!

happytobehere
happytobehere
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Date: 4/14/11 8:38 PM

I don't know much but I'll start this off by saying a woman I work with has a son with Aspergers. He is quite bright but has no social skills. We would try to make conversation with him just to be friendly and meet up with a stone wall.
Once we knew of his condition we were much more understanding.
In the fifties when I was growing up this would have been kept a secret in the family (not that it would have been diagnosed anyway in those days). I think being open and honest can only help. I wish you the best as it is difficult enough to raise a family without any issues.
I'm sure you'll get lots of good advice from our sewing friends here.

Sharon1952
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Sharon1952  Friend of PR
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Date: 4/14/11 9:22 PM

Asperger's Syndrome is on the autism spectrum and as such how a person presents with symptoms is totally unique. Some are more affected than others in terms of the symptoms. Some people show numerous symptoms and some only show one. Some are totally asocial and others just appear to be shy. Most are quite intelligent.

But the good news is your son definitely is entitled to support in the classroom that will help him meet his educational goals.

If you've been watching American Idol, one of the singers openly announced his diagnosis and he is a talented musician who is married with a child. I've met professors and more than a few scientists who were on the spectrum during my decades in education.

You will find your DS easier to understand if you do some reading on how the brain functions for him. There are some great resources on the web- including support groups.Aspergers Support Group

-- Edited on 4/14/11 9:23 PM --

------
Sewing: A creative mess is better than tidy idleness. ~Author Unknown

marec
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marec  Friend of PR
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Date: 4/14/11 9:43 PM

Exactly what Sharon said above. If you also need to talk, feel free to PM me. I taught reg ed but all Aspergers and autistic labeled kids came through my class. There is lots of support both in the school and community!

------
my blog: http://kf-biblioblog.blogspot.com/
Sewing through my pattern stash-145
completed.

CurlySu717
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Date: 4/14/11 10:44 PM

I think my BIL is an undiagnosed Asperger's kid. I dated my husband for 2 years before he'd say more than 3 words to me.

From what I understand, because Asperger's kids are so smart, they can often learn the social skills they don't naturally have. I remember hearing a story on NPR about some sort of after-school program that literally taught kids how to interact with each other, how to make conversation, how to respond to someone, etc.

------
"To love another person is to see the face of God!" ~Les Miserables

www.lillianbettyandsibyl.blogspot.com

DoggyGirl
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DoggyGirl
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Date: 4/14/11 11:31 PM

A friend of mine has a son with Asperger's. She told me that the best advice she got compared his learning of social skills to learning a new language. I.e. social skills are basically a foreign language - they don't come naturally to someone with Aspergers.

Beth

Sherril Miller
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Date: 4/15/11 0:14 AM

Larisa, I just want to give you a great big hug. I know exactly what you are going through. I went through it with my son. When he was in 2nd grade he was diagnosed with ADHD and we started him on stimulants. He is 16 today and still on stimulants. When he was in 4th grade, he was diagnosed with a emotional disability and placed in Special Ed at the regular school. No one wanted to say the word Asperger's to us, but the school psychiatrist began his treatment as if he had Asperger's. They did include "Autistic-like behaviors" as part of his diagnosis.

I just want you to know that there is light at the end of the tunnel with this diagnosis. My son has gone from a completely non-comunicative person person who had no friends and didn't know how to act in social situations and who would rage violently out of control when he was pressed into situations that made him uncomfortable.

My son was fortunate to get placement into a non-public school for autistic kids and if you were to meet him today you might pick up on a bit of oddness about him, but maybe not. He is very active in community theater and this semester I pulled him out of the special ed school and he is attending public high school in their special ed program. He is the star of the drama class and has started an Anime club at this new high school. He has lots of friends and either I have a house full of boys or he is at his friends house almost every week-end. If you would have told me 7 years ago that my son would have even one friend, I wouldn't have believed it. He was depressed and told me repeatedly that he wanted to die. It's hard to believe that my son today is the same child. Some days the only thing that kept me going is knowing that however hard it was to be my son's mother, it was even more difficult to be my son. It breaks my heart to even remember these moments to tell our story here. My son is embarrassed about his behaviors during those years, but he knows it was his disability that caused those behaviors, something he couldn't control anymore that you can stop a train wreck.

He is already on-track to graduate next year from high school and is going to be attending a Jr. college to make up the work he missed being in a special ed school so that he can transfer to the university of his choice. Ideally he would go right into the university from high school, but the special ed label on his transcript classes means that he has to take a lot of classes over again to show proficiency without the special ed label. It will take him much longer to get his college degree, but it's something he is determined to do and I'm sure he will.

I just want you to know that there are success stories out there with Asperger kids--that's what my son has, diagnosis or not. Love him and train him. Many things that are innate to you and me must be taught to our kids. How to look a person in the eyes when you talk to them, how to communicate and not have to conversation center around their highly focused single subject, how to give people their personal space, etc. These are things that Asperger kids just don't understand. Be very consistent on behavior modification and consequences. Take all emotion out of your voice when disciplining your son. Go cry later when he isn't watching if you have to (you know I did many times), but don't take his behavior personally, even though it's easy to feel that way.

I'll shut up now, and you can PM me here or on FB any time you have questions or just want to talk.

------
Visit my blog at http://sewingsaga.blogspot.com

If it's worth sewing, it's worth sewing well;
and if it's worth sewing well, it's worth FITTING FIRST! - TSL

kellbatt
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Date: 4/15/11 2:17 AM

My son was diagnosed with Aspergers two years ago at age 13, we always thought he was on "the spectrum" but took many years to finally get the diagnosis.
There are many good books out there on the topic, look up Tony Attwood, he is very well regarded in this field.
As you are in another part of the world to me, i can only offer general advice. Get in contact with your local Autism Association and register with them. As a result of doing this we have been able to access a couple of different programs dealing with social skills, it is also a great way to meet other parents in the same situation as yourself.
My son has been seeing a psychologist for about 3 years, and she has been vital in helping him deal with anxiety, outrages and meltdowns. She has supported my husband and my self in modifying some of his more destructive/ violent behavior, if possible have your husband attend as many of the appointments regarding your son, it is so much easier than reporting back, and it makes sure you are both on the same page when dealing with him.
My Dh and I celebrate small victories, such as Ds handing in assignments on time (he is very unorganised) and stay in regular contact with his High School teachers, they email us his assignments and any other subject info too.
You will have good days and bad days, you will have to teach and reteach him things that you never thought you would have too, but it is all worth it when they get the hang of it and the pride they have.
Please feel free to ask me anything else.
All the best,
Kellbatt

lareine
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lareine  Friend of PR
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Date: 4/15/11 4:48 AM

I'm pretty sure I am on the spectrum for Asperger's, at least in some areas. I've never been formally diagnosed but all the signs point towards it. I'm very intelligent but have no clue how to read or respond to social cues. What seems to me to be totally acceptable behaviour, because it's based on logic, is viewed by others to be rude, unhelpful, aggressive, or just generally unfriendly. I never mean to be any of those things, but social conventions don't make much sense to me and I don't always speak or act the way that people expect in a social situation.

I had to learn over the years to read the signs that somebody else expected me to respond in a certain way, and then give the expected response. Reading books on human behaviour helped a lot as I understand what is expected of me. It is definitely a mental learning process rather than a felt one. I've just learned to soften how I deal with other people even if it still makes no sense to me.

As well as the social awkwardness, I need to have everything planned and get very upset and stressed if my plans are changed at the last minute. I'm fine with planning to do nothing, or planning to just float around and see what happens, but even those things have to be planned in advance. I'm sure this is part of it.

I agree with the points above that training is required -- it's certainly what I needed. I just wish somebody had figured out that I needed help while I was a lonely teenager or young adult, wondering why nobody wanted to spend time with me. My husband knows that I have problems with social behaviour and he tells me if I need to change what I'm doing, and constantly reinforces it. I need that too.
-- Edited on 4/15/11 4:51 AM --

Mary W
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Date: 4/15/11 7:34 AM

My 13 year son was diagnosed with Asperger's at the age of 4.An astute preschool teacher suggested I have him evaluated after observing some of his behaviors.Over the years there have been some very trying times. He still has some trouble controlling his anger and this poses problems at school. He is in regular education classes and doing fairly well. We do have to keep a close watch on him academically. He was in an Autism support classroom for 1-3 grade and missed out on some of the basics as a result.He has pretty much caught up. His social skills continue to improve, but he still does not have much of a social life. Sherril Miller summed it up very well. If I can be of any help please PM me.

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