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Topic : Asperger's Syndrome

Number of Replies: 125
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Created on : Sunday, September 17, 2006, 11:59:34 am
Author : DrPhilBoard1
If your child suffers from Asperger's syndrome, find support and share advice with other parents here.

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November 8, 2006, 8:56 pm CST

Is it really Asperger's .. or not?

Hi, my daughter was always a "little bit different" growing up. She didn't have any friends and really enjoyed just being by herself. She was shy and fearful of strangers, and liked to twirle shoelaces, long blades of grass, anything that would spin around her head for hours on end. During Preschool the teacher had her tested for Autism. The doctor said she didn't have that and she was fine. In Kindergarten once again the teachers had me test her for Autism with a different doctor. This one told me she didn't have it but was very intelligent and had to be kept stimulated or she would get bored in school. My daughter was SUSPENDED in Kindergarten for kicking her teacher! She was then suspended in first grade for biting the Principal. In Second grade she spent a lot of time on the "bench" outside the principal's office.  She never could handle a substitute teacher or much change of any sort.  I would talk to a lot of parents about her behavior and they didn't seem to think there was any problem. Being my firstborn I really had no previous experience with children's behavior.  As she got older, she still didn't have any friends until the 3rd grade, when one girl befriended her because she had horses at her house and basically was using her to ride the horses.  Two years later that girl basically dropped her as a friend altogether when she got her own horse. My daughter didn't recover from that episode until her senior year in High School, when she finally made another friend. She doesn't care how she dresses, or what her address or phone number or birthdate or months of the year are; she doesn't shave her legs and is terrified of "boys". She wears no makeup. She is currently 19 years of age now, graduated with straight "A"s in school. The teachers all loved her and made sure to tell me so. She makes eye contact but is still extremely shy until she gets to know you and trust you. My older sister was telling me for years that something was "wrong" with my daughter and finally found this article on the internet about AS. I purchased a book on it to learn more about the symptoms. If my daughter does have a case of AS, it must be very slight. She does have extremes, such as collecting all of the Anime she possibly can, and when she was younger having ALL of the Pokemons, and then Digimons. She basically lives in her bedroom watching TV or reading Mango books when she is not working. We have a riding stable and she is a beginning riding instructor with 30 + students. The parents and the students all think she is great. She is very intuitive and sensitive to others and horses. She writes science fiction fantasy stories which I am trying to get her to type up and publish. Everybody who reads them says they are great and want more. She does Ceramics and does very abstract fantasy creatures that would sell well in some artsy stores. She still walks around her room humming and making all sorts of sounds while twirling around her "paperscript", a name given to her making long paper strips to play with when I took away her laceup shoes and the grass died off.  Her father things she is "strange" and won't let her do these things when she is at his house. She knows she is different, but seems very comfortable with it and really doesn't care. When people ask her how she is, she replies, "Normal". She wants to live at home with me forever, and I am still trying to get her to drive safely enough to let her have a driver's license. She is afraid to drive and cannot see much point in it.  She seems to relate to people with disabilities better than the average person out there, such as her only friend who has a hearing aid and learning disabilities. She can go for weeks without seeing her or so much as talk to her on the phone and the same goes for the friend.  She works hard for me when I ask her to, she doesn't take any initiative, but will do whatever I ask her to. She works a lot for "free" to help me pay the bills. She's very generous at times and very selfish at other times.   So what do you think...Is is Aspergers'??????
 
November 8, 2006, 10:40 pm CST

Inspiration

To all those parents of children with autism, aspergers, andother PDD’s,   

I believe that the world is truly blessed to have parents likeeach of you.  The amount of energy andstrength it takes to care for and fight for your children every day is astounding.  My personal experiences as a para for a childwith autism have brought me great joys over the past six years.  I was given this poem a few years ago; I hopeit brings inspiration to each of you….   

                                                    "Welcome to Holland"   

                                                   By Emile Perl Kingsley   


I am often asked to describe the experience ofraising a child with a disability to try to help people who have not sharedthat unique experience to understand it, to imagine how it would feel. It'slike this ...   


   

When you're going to have a baby, it's likeplanning a fabulous vacation trip … to Italy. You can buy a bunch ofguidebooks and make your wonderful plans. The Colosseum the Michelangelo David,the gondolas in Venice.You may learn some handy phrases in Italian.  Its all very exciting.   


   

After months of eager anticipation, the day finallyarrives. You pack your bags and off you go. Several hours later, the planelands. The stewardess comes and says "Welcome to Holland.”   

“Holland?!?”you say. “What do you mean, Holland?I signed up for Italy!I'm supposed to be in Italy.All my life I've dreamed of going to Italy."   


   

But there's been a change in the flight plan.They've landed in Hollandand there you must stay. The important thing is they haven't taken you to ahorrible, disgusting, filthy place full of pestilence, famine and disease. It'sjust a different place.   


   

So you must go out and buy new guidebooks. And youmust learn a new language and you will meet a whole new group of people youwould never have met.   


   

It's just a different place. It's slower-paced thanItaly, less flashy than Italy. Butafter you've been there for a while and you catch your breath, you look around,and you begin to notice that Hollandhas windmills. Hollandhas tulips. Hollandeven has Rembrandts.   


   

But everyone you know is busy coming and going fromItalyand they're all bragging about what a wonderful time they had there. And therest of your life, you will say "Yes that's where I was  
supposed to go.That's what I planned".   


   

And the pain of that will never, ever, ever goaway, because the loss of that dream is a very significant loss.   


   

But if you spend your life mourning the fact thatyou didn't get to Italy, youmay never be free to enjoy the very special, the very lovely things about Holland.   

    

 
 
November 9, 2006, 8:45 am CST

Horseteacher, It may be!

Quote From: horseteacher

Hi, my daughter was always a "little bit different" growing up. She didn't have any friends and really enjoyed just being by herself. She was shy and fearful of strangers, and liked to twirle shoelaces, long blades of grass, anything that would spin around her head for hours on end. During Preschool the teacher had her tested for Autism. The doctor said she didn't have that and she was fine. In Kindergarten once again the teachers had me test her for Autism with a different doctor. This one told me she didn't have it but was very intelligent and had to be kept stimulated or she would get bored in school. My daughter was SUSPENDED in Kindergarten for kicking her teacher! She was then suspended in first grade for biting the Principal. In Second grade she spent a lot of time on the "bench" outside the principal's office.  She never could handle a substitute teacher or much change of any sort.  I would talk to a lot of parents about her behavior and they didn't seem to think there was any problem. Being my firstborn I really had no previous experience with children's behavior.  As she got older, she still didn't have any friends until the 3rd grade, when one girl befriended her because she had horses at her house and basically was using her to ride the horses.  Two years later that girl basically dropped her as a friend altogether when she got her own horse. My daughter didn't recover from that episode until her senior year in High School, when she finally made another friend. She doesn't care how she dresses, or what her address or phone number or birthdate or months of the year are; she doesn't shave her legs and is terrified of "boys". She wears no makeup. She is currently 19 years of age now, graduated with straight "A"s in school. The teachers all loved her and made sure to tell me so. She makes eye contact but is still extremely shy until she gets to know you and trust you. My older sister was telling me for years that something was "wrong" with my daughter and finally found this article on the internet about AS. I purchased a book on it to learn more about the symptoms. If my daughter does have a case of AS, it must be very slight. She does have extremes, such as collecting all of the Anime she possibly can, and when she was younger having ALL of the Pokemons, and then Digimons. She basically lives in her bedroom watching TV or reading Mango books when she is not working. We have a riding stable and she is a beginning riding instructor with 30 + students. The parents and the students all think she is great. She is very intuitive and sensitive to others and horses. She writes science fiction fantasy stories which I am trying to get her to type up and publish. Everybody who reads them says they are great and want more. She does Ceramics and does very abstract fantasy creatures that would sell well in some artsy stores. She still walks around her room humming and making all sorts of sounds while twirling around her "paperscript", a name given to her making long paper strips to play with when I took away her laceup shoes and the grass died off.  Her father things she is "strange" and won't let her do these things when she is at his house. She knows she is different, but seems very comfortable with it and really doesn't care. When people ask her how she is, she replies, "Normal". She wants to live at home with me forever, and I am still trying to get her to drive safely enough to let her have a driver's license. She is afraid to drive and cannot see much point in it.  She seems to relate to people with disabilities better than the average person out there, such as her only friend who has a hearing aid and learning disabilities. She can go for weeks without seeing her or so much as talk to her on the phone and the same goes for the friend.  She works hard for me when I ask her to, she doesn't take any initiative, but will do whatever I ask her to. She works a lot for "free" to help me pay the bills. She's very generous at times and very selfish at other times.   So what do you think...Is is Aspergers'??????
Your daughter may very well have Asperger's, or even High functioning Autism.  It wouldn't hurt for her to seek out a re-evaluation.  This is not the only site I have come across with information on Asperger's/Autism and there quite a few books out there on the subject; I've found that some who have Asperger's can often have other diagnoses (like bi-polar).  So it may be very beneficial to have her seek the advice of a Psychiatrist/Psychologist that specializes in Asperger's/Autism. Especially if she also has any other diagnosis that  may need medication for treatment. And it can be hard to find a good doctor so don't be afraid to look and ask for consultations before tests, ask their qualifications, how long they've been specialized in Asperger's/Autism, what kind of research have they done..and so on.  Good Luck! & God Bless!
 
November 9, 2006, 10:54 am CST

Hey

Kelly, Thanks for that Poem. It is good. My psychiatrist,Dr. Michelle Simon, told me that lots of adults were miss-diagnosed when they were children.I filled out a questionairre at her office,and she told me that her child has this,and that I had some of the symptoms,so if I were you,I would talk to a Doctor again about this  to get all the facts straight about it because that does sound like some of the symptoms that I have. God Bless You All!  

 

 

 

 
November 10, 2006, 8:41 am CST

Our Aspergers Journey

As noted in my earlier post, my twin daughters were diagnosed in 2000 with Aspergers Syndrome after a very long journey for answers.  When my girls were toddlers, I noticed they had some unusual abilities, like memorizing songs, movies and stories.  They were very verbal, could speak and read quite early, and could articulate on levels seemingly beyond their ages.  They loved to play and had amazing imaginations too!  They knew many obscure facts and were “little professors.”  I didn’t see any problems except for some obvious issues with things like balance and fine motor skills.

 

Wasn't long after they began kindergarten that certain issues began surfacing, like immaturity, focused interest, perpetual play and limited attention spans.  Being twins, they had their own language too, so some of that appeared to simply be growing phases.  They repeated kindergarten simply for the growth year, since they were a bit on the younger side of the rest of the group.

 

Long story short, elementary school was a disaster.  No teachers knew exactly how to teach them.  I demanded testing year after year after year and there would be evidence of problems but they couldn’t tell me what they were.  I took my girls to counseling and ultimately to a psychiatrist who told me that they were ADHD, and to face up to it, that I didn’t discipline them enough or spend enough time with them, etc.  Basically they were hyper and it was my fault.  I cried for years; they flunked every year in school while being ignored in the class where they cut their clothes and drew on their desks.  Finally, after more testing, in 5th grade the school decided to put them in “self-contained classrooms” where they were in with severely impaired children.  Needless to say, they were teaching the class.

 

After a lengthy battle fighting insurance to pay for comprehensive testing, they were finally diagnosed by a panel of “experts” at the University of Michigan.  And folks, I’d highly recommend doing this if you are needing official diagnosis.  Without a diagnosis, you are on the fighting end to get your kids the education they need, but with one, the doors open.  There are many more educated teachers available now, and if you have a diagnosis in-hand, you should also be participating in IEP meetings every year where you sit down and plan with the schools special education department so that you know what and how your child will be educated. 

 

Now, my kids are consistently on the honor roll, they are active in Special Olympics, and they adore school and church.  It’s been a very long, tough road, but well worth the outcome.  Of course there are many more details to our story, and many tears shed for a long time, but the journey has taken us to a satisfactory destination: success! 

 

Parents, your kids will be JUST FINE.  Get them an official diagnosis, then to a school with resources to teach your child.  Please choose NOT to medicate them, but to find diet, exercise and social approaches that help them learn and memorize acceptable behaviors.  It’s very possible and you have every reason to be hopeful! 

 

Good luck & God Bless!     

 
November 10, 2006, 9:37 am CST

Miracle Run

Hey All, I would highly recommend the Lifetime Original Movie "Miracle Run."  It stars Mary-Louise Parker as a single mother who has the challenge of raising a set of Autistic twin boys. visit lifetimetv.com for the details.
 
November 12, 2006, 5:19 am CST

Been There

Quote From: marjes66

My son is 14 years old and was diagnosed with Aspergers when he was 13 years old.  Imagine my relief when we discovered that it wasn't our bad parenting that caused his "eccentric" behavior!!!  I was so relieved.  Because teachers could not handle him in his primary grade school, I pulled him out to homeschool him.  He did wonderfully (academically) at home.  The only problem was that he fought continuously with his siblings.  It almost seemed like it was he verses the other four.  My oldest son does not tolerate him at all.  There is a lot of contention between the two of them.  My son talks non stop and feels like he has to be in everyone's business.  He is quick to discipline his younger sisters when I am right there to take care of the situation myself.  I feel like I am mad at him more than happy with him because he doesn't take redirection well, he gets angry easily, he even raises his voice at me at times, he has a one track mind, he does not empathize with anyone and doesn't realize how hurtful his words are to others.  He does not get along with anyone!!  We decided to put him back in public school this year.  He is doing really well.  He has an IEP and a para for a few of his classes.  He has some "friends" in his school that have Aspergers and they play Yu-Gi-Oh everyday.  But they still irritate him to no end!!!  I just wish he could have a decent relationship with someone outside of our family!!!  My dream is that he can learn to cope with society and meet a wonderful and patient woman and get married and have a family.  At this rate it seems like he will be with us forever, but he wants to go to college and so I will encourage him and support him!!!  I say "I" all the time even though I am married, I am just presently alone as my husband is serving in  Iraq for a while and I am used to saying I instead of we!!! 

I home schooled my son, Joe, as well because I was afraid he would be picked on.  He also had a hard time with his brothers.  He would get so mad that he'd cry and tell me that I always stuck up for them.  With Joe he never seemed to see life from the other persons perspective.  But I guess that is what AS is about. 

What helped with Joe was Vitamin B-6 and Magnesium.  Dr. Rimland, of the Autism Institute in California, found that AS kids were often lacking in these.  B-6 is important in neuro- transmissions and magnesium helps to prevent hyperactivity that can accompany B-6 as well being an important supplement. 

I also removed milk from his diet.  He craved all types of foods high in milk so it was tough at first but his meltdowns became fewer and fewer.  Today is in high school.  He has friends.  He weight lifts, wrestles and plays football.  He is happy.  If he eats food with milk he becomes depressed and irritable again.  I am hoping that he will outgrow this intolerance but he hasn't yet.  His allergy testing is negative- this is a reaction not an allergy.  Food for thought.   You are in my prayers!

 
November 13, 2006, 8:07 am CST

Helpful

Quote From: fromthesquare

I home schooled my son, Joe, as well because I was afraid he would be picked on.  He also had a hard time with his brothers.  He would get so mad that he'd cry and tell me that I always stuck up for them.  With Joe he never seemed to see life from the other persons perspective.  But I guess that is what AS is about. 

What helped with Joe was Vitamin B-6 and Magnesium.  Dr. Rimland, of the Autism Institute in California, found that AS kids were often lacking in these.  B-6 is important in neuro- transmissions and magnesium helps to prevent hyperactivity that can accompany B-6 as well being an important supplement. 

I also removed milk from his diet.  He craved all types of foods high in milk so it was tough at first but his meltdowns became fewer and fewer.  Today is in high school.  He has friends.  He weight lifts, wrestles and plays football.  He is happy.  If he eats food with milk he becomes depressed and irritable again.  I am hoping that he will outgrow this intolerance but he hasn't yet.  His allergy testing is negative- this is a reaction not an allergy.  Food for thought.   You are in my prayers!

I did not know that there is something that can taken for this.  It this bought over the counter ,and is it just called vitamin B6. I will look up that Dr. on the internet. Thanks so much.
 
November 14, 2006, 6:40 am CST

Still in limbo

 My son was diagnosed 3 yrs ago with ADHD (he is currently 9 yrs old).  I thought that he was autistic (high functioning) or had aspergers.  I believe that he will be diagnosed with aspergers by the time he is 20.  He was a little late to walk (18 mos.) and late to speak in simple sentences (3 1/2 yrs.) but was and is hyper-verbal and by the time he was 2 1/2 yrs old he could read 10 words, knew all his letters, colours, and numbers 1-9.  He has melt-downs frequently and daily, but not at school.  I believe his "good" behaviour at school stems from his high anxiety and fears.  He is more relaxed at home and feels more comfortable being himself.  He has many fears; most are either noise related (I couldn't get him to go to school at all during his schools Fire Prevention Week because of the announced fire drills and he has to leave the room when I vacuum) or due to fear of unknown or change.  He can memorize very well but his UNDERSTANDING of a concept is below his peers.  He will obsess about things...a kid who is mean to him, Spongebob, trains, but not completely exclusively.  He smiles alot, constantly tries to be funny but it's really off even for the kids his age, and is very cuddly.  He doesn't make eye contact very much and though it was officially remarked upon by the Speech/Language Therapist who assessed him other doctors have just poo-pooed it (along with the hyper-verbal, hyperlexia, high anxiety, noise sensitivity, and oh yeah the fact that when he was a baby until he was 1 1/2 he would spin the wheels on Matchbox cars for hours and hours.  He only stopped when he discovred the phone book and would pore over the yellow pages for hours and hours.  That little obsession ended when he was given a calculator at the age of 3.  He taught himself that if he pushed the 1 then the + followed by the = he could make the numbers scroll up into the tens of thousands.).  He is not very coordinated but does not have the text book specific coordination problems of autism and aspergers.  When he was being tested, they discovered that although he is left-handed, he is right-footed (will kick at a ball with right foot).  He is also very socially inept and gets bullied quite a bit.  Kids in his class in general seem to like him but he has only one buddy who is somewhat excentric himself.

I need parents of kids with aspergers to read what I have written about my son and tell me if he sounds like their child or not.  I'm tired of doctors who take out their textbooks to diagnose him.  I'm tired of his fears being blamed on me.  I was told that it is attention seeking behaviour.  His pm teacher (who is also the VP of his school; she team-teaches with his am teacher) had to send him home the first day of Fire Prevention Week because he became hysterical when fire drills were announced.  He is usually good as gold and quiet as a church at school.  When I told her that his pediatrician thinks it's attention seeking behaviour she said that she was convinced that his fear was authentic and that she would support me if needed.  It feels really good to have someone unbiased in my corner.  So what do y'all think.
 
November 14, 2006, 1:46 pm CST

School, School, School

Quote From: lornad36

 My son was diagnosed 3 yrs ago with ADHD (he is currently 9 yrs old).  I thought that he was autistic (high functioning) or had aspergers.  I believe that he will be diagnosed with aspergers by the time he is 20.  He was a little late to walk (18 mos.) and late to speak in simple sentences (3 1/2 yrs.) but was and is hyper-verbal and by the time he was 2 1/2 yrs old he could read 10 words, knew all his letters, colours, and numbers 1-9.  He has melt-downs frequently and daily, but not at school.  I believe his "good" behaviour at school stems from his high anxiety and fears.  He is more relaxed at home and feels more comfortable being himself.  He has many fears; most are either noise related (I couldn't get him to go to school at all during his schools Fire Prevention Week because of the announced fire drills and he has to leave the room when I vacuum) or due to fear of unknown or change.  He can memorize very well but his UNDERSTANDING of a concept is below his peers.  He will obsess about things...a kid who is mean to him, Spongebob, trains, but not completely exclusively.  He smiles alot, constantly tries to be funny but it's really off even for the kids his age, and is very cuddly.  He doesn't make eye contact very much and though it was officially remarked upon by the Speech/Language Therapist who assessed him other doctors have just poo-pooed it (along with the hyper-verbal, hyperlexia, high anxiety, noise sensitivity, and oh yeah the fact that when he was a baby until he was 1 1/2 he would spin the wheels on Matchbox cars for hours and hours.  He only stopped when he discovred the phone book and would pore over the yellow pages for hours and hours.  That little obsession ended when he was given a calculator at the age of 3.  He taught himself that if he pushed the 1 then the + followed by the = he could make the numbers scroll up into the tens of thousands.).  He is not very coordinated but does not have the text book specific coordination problems of autism and aspergers.  When he was being tested, they discovered that although he is left-handed, he is right-footed (will kick at a ball with right foot).  He is also very socially inept and gets bullied quite a bit.  Kids in his class in general seem to like him but he has only one buddy who is somewhat excentric himself.

I need parents of kids with aspergers to read what I have written about my son and tell me if he sounds like their child or not.  I'm tired of doctors who take out their textbooks to diagnose him.  I'm tired of his fears being blamed on me.  I was told that it is attention seeking behaviour.  His pm teacher (who is also the VP of his school; she team-teaches with his am teacher) had to send him home the first day of Fire Prevention Week because he became hysterical when fire drills were announced.  He is usually good as gold and quiet as a church at school.  When I told her that his pediatrician thinks it's attention seeking behaviour she said that she was convinced that his fear was authentic and that she would support me if needed.  It feels really good to have someone unbiased in my corner.  So what do y'all think.

I do not know if you have taken advantage of the opportunities that the public school system offers parents.  Special Education Services are willing to help you with your situation.  They can and  do offer to test your child.  They will also observe your child in a class room setting. They do need your permission to do these tests.  Once the tests are done and they tell you what they can do to help you, you can take their results and concerns to a Psychiatrist that specializes in the area you need, (whether that is Asperger's or something else).  

 

 

Public schools are not all the same, see what yours is willing to offer and what the law REQUIRES them to offer.  It is a lot harder for a doctor to dismiss a parent's concerns if those concerns are shared by those that are considered to be equally  "educated". ( you know your child better than anyone, if you truly feel there are concerns that need to be addressed, don't stop until they are! ) 

 

Cody, our youngest son, was in the public school system since he was 3. I home school him now because my husband and I felt that it would beneficial for Cody.  Most of the teachers Cody had were lacking some very common teaching skills, some common human skills and the district is not equipped with the knowledge as to where to place and help children with Asperger's Syndrome.  Children Cody's age (12) begin to form clicks in schools and bullies tend to be a bit more rough then in the elementary ages they  also have found ways to bully others without being physical.  It is very easy for those that don't fit the mold to stand out and to be ostracized.  He did not have any friends (if you asked him, a friend is someone who would not be mean to him) only those that tolerated him. For Cody it was best we removed him from this situation, he was beginning to suffer emotionally and academically. My husband and I thought long and hard before removing Cody from the public school setting and for us, we believe we have made a good decision. 

 

I wrote that last part only to show that a child with Asperger's ( any child really) and the parents who raise that child need support, knowledge and a willingness to do all they can to help that child be all they can be. The sooner you get that support, that knowledge, the better!  We are grateful for the help we received from public school system when it worked for our son.  The time came to take another avenue.  Look for all the avenues you can, and don't fret when they don't lead were you hoped they would.. just try another!  

 

 The responsibility of being a parent is a gift, don't throw it away.

 

 
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