Topic : 01/17 Extreme Disorders

Quote From: sthrngrl41

Hi there, 

 I seen the show today on extreme disorders and all I could think about was my son ( now 14 years old  )and his eye condition known as NYSTAGMUS or also known as dancing eyes.  

We found out he had this condition when he was 5 years old. He was in Kindergarten and his teacher noticed when he was coloring and or writing on paper he would have to put his face almost against the paper while he was coloring or writing to focus.I never had seen him do this at home;  the teacher told me she was concerned and thought I needed to know.So I took him to the eye doctor and they then told me he had a condition known as Nystagmus or "dancing eyes". The doctor also told me children are either born with it or develop it through some type of injury. I know he wasn't born with it and I don't remember any accident he had that may have caused this to happen.  

I asked the doctor about what he could take to make it go away and he said there was nothing that can be done. Of course over the years his eyes I think have got worse or either they are more noticeable, I know the last several years his schoolwork has suffered and dislikes reading which he liked at one time. I have taken him to Neurologists,more eye doctors, etc. and no one I have spoke with in person can tell me how to get some relief for my son.  

Their was one doctor who said my son was having petit mal seizures when his eyes were moving from side to side. Then another one said he wasn't. So we never really were sure of anything.  

Over the years he has been made fun of by other kids as well as some adults and its made my son almost "warrior like;" no one can hurt me" and "it doesn't bother me" kind of attitude.  

  

I have looked for so many on line doctors to contact , websites, etc., that I thought could help us or give us some direction but nothing positive has been achieved yet. 

 I know that there is someone or something out there to assist us with this condition and I  am hoping  with this posting we can get some feedback  and educate us on any  treatment plans or any doctors that may have an expertise in this area. Thanks so much for taking time to read this message, and I look forward to replies.   

 

Sincerely,  

Susan in Alabama 

Quote From: lolaalex

I almost cried when I read about Alex.  He could be a clone of my son Nicholas, who is 18.  I received a diagnosis of Asperger's syndrome when Nick was already in High School.  All those years previous not knowing what was wrong.  He was originally diagnosed with ADHD, then intermittent rage disorder, oppositional behavior.... YADDA YADDA YADDA!!!   The diagnosis of Asperger's Syndrome seemed to blend all the behaviors together... it all fit.  But, because of Nick's advanced age, he already had a strong oppinion formed of himself and he will not accept any diagnosis.  He doesn't think that there is anything wrong with him.. the problems lie with the people around him.  I want him to understand what makes him different.  To recognize when he is having a melt down.  He gets verbally abusive to me when ever I bring up this condition.  I don't know what to do.  It doesn't help that he has a father who insists that there is nothing wrong with his son that a good crack across the face can't cure.  He says all Nick has to do is GROW UP.  Makes me crazy.  I will still try to help him through the times that he is exhibiting stress... Clenched fists, shaking... Just like Alex... I would love for Nick to meet Alex... or maybe develop a computer chat relationship....  

Nick is now in college... doing very well... but still has problems with personal space and the people around him.   

  

Quote From: marylyn424

  

Asperger's kids are heroes.  

From my experience they navigate this world day to day, in a much different way than others do.  

They don't understand or relate to the social innuendos most do. They don't do BS. 

Typically, they are honest, trusting, wonderful people. In this world, there, in itself, is good reason for their frustration.  Especially, being in  high school.  

When I heard that fine young man say he really likes Dr. Phil, well that  was a good enough reccomendation for my liking. There's a good commercial spot. 

Aspies are like Data from Star Trek. Ask one who their favorite character is. 

I've read the overstimulation they have in their brain is much like that of warriors or hunters in 

earlier times. They are superior. 

I do wish the word disorder would be changed to behavior. I never saw or heard it labeled opportunity. So...why not realize... that  it can be one? 

High functioning is just that. Channeling their strengths and watching the outcome can be  truly amazing. 

There isn't really anything "wrong" with them, it's other people's fear ...leading to criticism, that makes them feel bad, and all because they are "different".  Well, everybody is different.  

A parent of a special needs child should be damn proud. Of their child and of  themself. 

There are plenty of bonuses here.  

Give them the maps when you travel, you don't need to remember telephone numbers for take out, any dates, years, birthdays, first or last names, addresses, hotels you have stayed at, every one calls for help on video games, get them a computer (monitor it, they are niave),  you could get them on the "Millionaire" game show, and although we haven't done it: what  a huge potential for card counting. 

Oh, a big bonus, did I mention their humor?  

I've always wondered if George Carlin has been blessed with a bit of it. 

  

Good resource  AANE  Aspergers Association of New England 

  

Quote From: mydnyte

 I am sorry I missed the show, but, I did read what was online here, and all the comments, etc postd here.  I  didn't know about the show until it 2 hours after it was on here, and that was because my 24 yr old daughter called and asked if I was watching.  It was just coming on (west coast,  I live in MN).  "Asperger's, isn't that what J.J. has?" 

OK, "J.J." is now 18, has SEVERE Asperger's & ADHD.  And on medication. Had it not been for ME pushing the Doctors constantly and telling them I don't care if they  "labeled" him, he wouldn't even have been diagnosed at all. He has ALL the classic "signs" of Apserger's as well as ADHD, and yet, the Doctors were reluctant to DO anything!  I saw 6- "psychologists" who told me I was "seeing things, paranoid, he's just energetic, he needs more discipline, he need to be spanked more, he is mentally retarded, he is just *all boy* and I was used to having a girl first (HELLO!  I am eldest of  3, including a brother and many cousins, started babysitting when I was 12!). 

Do you know what it is like to be constantly told your child's behavior and problems is all your fault?? That you are crazy, seeing things, don't know what you are talking about,  just can't handle him, all you want is to "drug him up", you need to spank him more/less, you are a hypocondriac,  etc?

I knew something was wrong when I could NOT hold him close to breast feed, it went dowhill from there. He stopped taking naps when he was 1 yr old, started running (not walking) at 8 months old. He was a big boy for his age, 24 pounds at 8 months, and soon learned how to open doors and "escape" . front & back doors had to have chains on them, wiith a pad-lock.  He climbed out the bedroom window when he was 2, dropped down 4 feet, and ran off, middle of winter, about 6pm. Of course I wasn't supposed to be doing dishes I guess, as the Police officer said "Why weren't you watching him?" and "We are supposed to beleive he got out THAT window?"  So I said fine.. I put him in his room, and shut the door, and went back outside.  J.J. opened the window, climbed over the sill, hung down, then dropped down and ran past the Officer and then prceeded to run up the street. I looked at the Officer and said "Why weren't you WATCHING him???" They didnt' even go after him!  OK, windows now had to be wired shut, and a chain on his door at night.

 I went throught all the usual "food allergy" crap. Only thing I found out is, artifical sweetenters makes it WORSE!!  Makes him "violent".  Why? I have no clue.  And no one else did either.  One pediatrician didn't belive me, so, I gave him a diet drink while we were in the office.  Can you say  "mass destruction"? He was 5 yrs old.  Dr's advice, don't let him havr artificial sweeteners. Another big DUH!

There are many stories I could tell. Like, for over a YEAR he would not eat anything but cheese sandwiches. (2 peices of bread, catchup one side, maoy other side, 2 pieces of cheese). I brought it up to the Doctors and anyone else I could think of. Of course, it was because *I* wasn't offering other things. I would offer, he just wouldn't eat them!  After about 6 months, I figured, OK, no bread, no cheese sandwiches, right?  So, I didn't buy bread.  Wrong. Guess what? Hamburger buns work. OK, no hamburger buns. Guess what?  Hot dog buns will work, you just fold the cheese in half. OK, no hot dog buns.   Guess what?  Crackers will work.  I gave up and just got the %$%&* bread!  17 MONTHS of freaki'n cheese sandwiches!  I can't stand to even look at one!  All I got from any of the so called "professionals" is all kids go through *phases*

Phases??? a "phase" is a few days, NOT 17 months!!

OK, so I FiNALLY got him help, a real diagnosis, & meds when the school LOST him for about 2½ hours when he was 5¾ yrs old. Yes LOST him.  Suddenly *I* wasn't imagining things!  He was officially diagnosed with ADHD (DUH!!!! I  Had been telling them for years) And was put on Ritalin, 20mg twice a day, so that ihe could concetrate in school, I could handle him the rest of the time. But, he needed to be able to concentrate at school.  Then of course some fresh out of school know-it-nothing woman from social services descides to write a report about me "self medicating him" (she visited the school for what ever reason I was never told)  Apparently oblivious to the FACT that Ritalin is a controlled substance and I had to literally go to the Doctor's office and pick up the phiysical prescription, then take it to the pharmacy, EVERY month.  Also proceeeded to write in her report that he has "behavioral issues, abuse suspected" . Of course, she never once talked to ME or any of his Docotrs!  Another "expert" told me he despirately needed psyciatric help.  She knew this, because he had been "reading up".  <rolling my eyes>

He was officially diagnosed with Asperger's when he was 11, by Dr. Kewely. Then put on Prozac.  (We had moved to England in '96 then moved to MN in 2000) When we got here, he was taken off Ritalin & Prozac, put on Adderall and Risperdal.  He is currently on Adderall (40mg twice a day), Risperdal (mg am 2 mg pm), & Remeron(30mg evening).  I have no idea if/when he can even be on his own, as he needs someone to make sure he takes his meds, etc.  He has the maturity of an about 8 yr old,  and all the usuall problems associated with both Asperger's and ADHD.  (side note: he caused the early retirement of one of his teachers, yet, another long story)

He has mentioned several time, he doesn't think he "will EVER get married, as no one would be able to put up with him and that he can't take care of himself, let alone anyone else" As well as, he "will never have kids because they might have what he does".

What am I supposed to say? Other than, "he shouldn't worry too much about it. I don't have a problem with it, so I am sure someone else won't either.  Besides, I can deal with him and his father (stepfather, also has ADD and is on Adderall, and Welbutrin for depression). Besides, his biggest worry should be that any girlfriend /potential wife would have to get past his 4 sisters, and a MOTHER, first, then deal with him." Hahaha

What is the saddest, is that the now 12 yr old sister decided when she was 10, that she will probably be the "one who will be looking after him", later.  So he will be "safe".

I have even had people tell me I should have him institutionalized.

Yes, it is a very long row to hoe. 

Pick your battles.

And remember the "J.J." rules:
1. If he isn't hurting himself, don't woryy about it.
2. If he isn't hurting others, don't wprry about it.
3. If he isn't hurting/damaging property, don't worry about it.

Don't we have enough to worry about, than the "little" things?

And for everyone's sake, so called "professionals" need to get a freakin' CLUE!

Michelle

Quote From: micasmom

Hi Everyone! I have been married to a man for almost 24 years and we have a son, 22, and a daughter, 12. I am extremely extroverted, love people and very communicative. Husband is not. He pretended to be when we were dating but as soon as we married he became different. He pretended to be really loving, and attentive etc. After the wedding it seemed as though he turned to ice. I thought it was me or that he didn't love me. He never can look into my eyes at all or anyone's. I don't handle rejection well and that is what I got all the time. When I had people over he would soon disappear into his room. My friends or family thought he just didn't like them. He is loyal, has a very dry sense of humor which I like, and he is very kind to others. He is dependable at work. He would always write down his stats on his nintendo games which I found strange. One day when we had been married for about a month, I saw him do this strange thing....he was in a daze, and did this hand/finger flapping thing. I was freaked out by this but did not tell him I saw him. I could always tell when he was "doing that" because I could hear him humming too. I asked him what he was doing at one time, and he didn't know what I was talking about or so he said. So I would "catch him" doing it and tell him see that is what I am talking about. He said he was just retarded and couldn't help it. I just thought it weird. Just another one of his weird traits. Over the years there were many meltdowns I could not understand either. He has an extremely low self esteem too. When we had our son, all was "normal" until our son was about 9 months old. I noticed he was so smart for his age and was fixated on trucks/cows and knew the sound they made. Over the next few years he became fixated on atari games then nintendo so much so that I had to take them away from him cause he acted as if he was "in" the game and would freak out playing them and be in a trance like state. He would have amazing fits. We thought it was from red and yellow dyes because he would have glassy eyes, red hot glowing ears and he would have screaming tantrums. Once the tantrum was over he would go into a sleep coma for 4 hours so much so that we could NOT wake him up until 4 hours were up. It was scary. Then when he was 5 years old we were in a store and he wanted a toy which he was fixated on (ninja turtles) and I said no, so he proceeded to scream that these are not my parents, they are kidnapping me...HELP! He screamed it over and over as we carried him out of the store, so embarrassed and yet, we were amazed at how clever this little 5 year old was to even think of that. Of course, he looks just like me and my husband so everyone just looked and either shook their heads or laughed. One day shortly thereafter, I looked out the window and saw him playing in his sandbox. He had his ninja turtles all lined up in a row and he was FLAPPING his hands.....I thought OH MY GOD! HE HAS WHAT MY HUSBAND HAS! I however, did not know what "IT" was. My son never did get diagnosed with anything. They said he had an intolerance to red/yellow dyes and that was why he had fits. We took all that away from him and it didn't get better. He became so enraged all the time. Such as I would tell him to go clean his room and he would freak out and want to kill me. He would scream at the top of his lungs (because he knew the neighbors could hear) and slam doors and punch doors/walls and it was HELL! I would want my husband to intervein but he never would cause he wanted to hide. He would meltdown and never knew what to do. So of course our relationship suffered a lot. We did counseling too. One set of counselors told us it was our parenting. We were not doing anything different than any other parents so we didn't know what to do. He was NEVER bad in school. He was well liked by all the teachers and had friends in school. He would save up his energy and let it out at home. I could not understand why when we went to parent teacher conferences the teachers always said he is so wonderful and participates and is a joy. I would say REALLY? He was so smart and none of his friends knew he was an A/B student cause he acted silly and was a joker around them. One day we were leaving the house and there was rummage sales all over town. We were just starting down the road and my son, opens the door, screamed at the top of his lungs...she is trying to kill me and threw himself out of the moving door of our van. I was barely moving, but all the neighbors saw this. I was horrified. He was laughing, however, I was not amused. This is what my life has been like with him. He does/says inappropriate things all the time. Like if I say I love you, he says I hate you. I like to say he is the opposite man. He has to oppose everything I say. He has to prove his point too. He will go look something up, and prove he is right. Which he usually is too. But he is really mean about it too. He likes to call others stupid, Ugly, fag etc...... We had a daughter when our son was 9 years and 11 months old. When I was pregnant with her, he had a rage and kicked me in the stomach. Everything was fine and it was not that hard but still, I was scared of what he may do to the new baby. Once she was born, he did not want to hold her and was not sure how to deal with her. The only problem was if she would get into his stuff. Other than that, no problems with them interacting together. Our son started playing guitar at age 12 and is so extremely talented. He has over 20 notebooks full of his original songs. He however, plays what is called DEATH METAL. It is a step beyond heavy metal. It is so weird and hateful sounded it makes me very agitated if I hear it. When he hears it or plays it it actually calms him down. It is the strangest thing I have ever seen. When he was 15 he freaked out at me because I told him he could not go to a party. He got on top of me and was screaming he was gonna hit me and kill me. Then once he got off of me, he went to the closet where my husband keeps his gun and he put it to his head and pulled the trigger telling us he wanted to die. He knew there was no bullets in the gun because we didn't ever have any. But still I knew he needed help badly. I called the mental health center and they said to bring him in. However, I knew he would jump out on the way to the hospital so I had the police take him there in hand cuffs. He spent a week in the mental health center for teens. They didn't help him at all. The tests he did he only answered what he knew they would want him too. Not what was really in his head. We had a counselor come to the house for months after that and he was great. But we never did get a diagnoses for him. However, the counselor helped him with his anger and outbursts. He said he just didn't know why he got so angry with me, but that he just felt it build up inside of him until it would blow usually over nothing. He knew it but he could not stop it. One day when he was 18 he had another rage toward me and shoved me and was threatening to kill me because I would not let him use my van to let him go get a tatoo. So, after the outburst I had had enough and told him he was an adult now and he had to move out. I could not take it any more. He weighed 275 and is a very large guy. I helped him move out and it was the best thing for us. He has a good job, a girlfriend of over 2 years and the same friends that he grew up with in school. He still has freak outs occasionally at me. Usually one time per year or so. He is mean and cruel. He calls us names and swears a lot. Every other word is the f word. His friends even think he is weird too, but they say oh that is just Mike. So I don't go over to his house much. He comes over hear a lot although. He says he thinks I am weird cause I analyze everything all the time. When I find out something interesting and want to talk about it he freaks out and says things like, what did Dr. Phil tell you that or did you see it on Oprah? He HATES me telling him anything that might be interesting to me. He has no tolerance for anything. He is racist, which he was not taught that way. His favorite saying is I HATE PEOPLE! He hates crowds also but if he is drinking in a crowd they definately know Michael is there. He is loud and obnoxious, but fun too. He has bouts of anxiety where he just cries and does not know why. He said to me that he feels like he is a weirdo and that he has always been different. He has always felt like he was not like anyone else. I see he is cold to his girlfriend and it reminds me of my husband and me. My daughter is so intelligent that at age 6 months I would read the book "Are you my mother?" to her and she would cry about the birdie not finding his mother. AT AGE 6 MONTHS! I could not believe it. She would not go to my mom or anyone but Me, my husband and her brother until she was 6-8 months old and really didn't want to. She never looks at anyone when they talk to her and she appears to ignore someone when they talk to her. She is an A+ student and meltsdown when she doesn't understand something. She is extremely shy. Or so that is what we thought it was. She has a lot of Aspie traits as well. Her teachers love her and she has only a few real friends because she hates people too. She is not violent at all like her brother was. She is really a delight. I noticed last year she has a few stimming things too. I saw her do something with her mouth and I was like OH MY GOD! NOT HER TOO! I WOULD THING TO MYSELF, WHAT THE HELL IS WRONG WITH THESE PEOPLE? On September 4, 2005 My life was changed. My brother-in-law, told me his son was diagnosed with Asperger's syndrome. I had never heard of this at all. I went home and looked on the internet. I cried all night reading all I could on this subject. THIS IS "IT", this is what my family has! My brother-in-law also has it. I have noticed my husbands other brother and one sister has it also. I have never been so relieved in my life! It is real it has a name. My husband, my son and my daughter has Asperger's! I am so grateful that I now know this. I have read at least 20+ books about it. I have not had them diagnosed yet, cause I have no clue where to do that. My husband and kids understand they have this because I have read the symptom lists to them and they see that it is them. I feel relieved yet, at a loss too. I have told my sons girlfriend that is why my son does the weird things he does and she is very understanding and loves him anyway....I think she may get sick of it though someday and leave him. I tell him he has to treat her wonderful and love her up and show love to her but he just says no. She says he does it sometimes but then he just won't. I am sorry to write a book, but I have been waiting for Dr. Phil to do a show on this subject. If anyone has any advice or comments, please let me know I welcome the input. Thank you for taking the time to read this....Paulette

Quote From: lreflex

I would so like to know the Homeopathic remedy used! We only do natural therapies no meds! We altered Matt's diet now which has helped tremendously but for the tics that would be soo great to try that remedy! Can you get my email address? Lori