Messages By: karen_kiki

Quote From: gabesmom

Our public library has over a dozen books on Asperger's. I've checked every one of them out, sifted thru them, and here are my favorites: Demistifying Autism Spectrum Disorders by Carolyn Thorwarth Bruey, Psy.D. (guide to understanding diagnosis) Understanding How Asperger Children and Adolescents Think and Learn by Paula Jacobsen (seeing life thru their eyes and treatment ideas) Asperger Syndrome and Adolescence by Teresa Bolick, Ph.D. (some chptrs apply to any age) Freaks, Geeks & Asperger Syndrome by Luke Jackson (written by a 13 yr old for adolescent, but excellent help to hear about life from an Aspie kid) The Oasis Guide to Asperger Syndrome: advice, support, insight, and inspiration by Patricia Bashe (comprehensive reference)

Quote From: hawkscream

 Cathy, certainly my heart goes out to all who experience these type of challenges, and also, to their parents.The man with Tourette's who was profiled later in the show is handling his life well, I thought. I believe he said he does not always take or rely on medications, and his wife is completely supportive of him as he is. He seemed to be very grounded, with healthy self esteem for himself as a unique and extraordinary creation of God.  

 But  I am troubled by your response to my letter.  One of the points I was attempting to make, from the perspective of one who lives WITHIN the ""disorder"", and who knows that expressed anger and frustration do NOT equate with a plan to act out and physically harm others- ( one might WANT to, but there is such a thing as morality and self control!) 

is that- just possibly- it is not the children and adults with AS, FAS etc who are out of step with God, His plan for humanity, and a balanced outlook on the world. 

My ""disorder"" (birth defect), did not ""prevent me from socializing normally.""because: There was no "normal socialization"" going on around me! Perhaps my life would have turned out very differently had I been able to go to a parochial school , but I did not have that opportunity.  

Do you think that  blatant snobbery, obsession with appearances and material wealth, hazing of newcomers to school, bullying, blatant sexuality amongst children and teenagers, indoctrination of children in the school system to teach them to compete intensely and ruthlessly with one another,  use of drugs and alcohol amongst minors, and picking on others is "" normal socialization?"" If so, that is tragic, for then you too have been brainwashed by the system to believe that that is a desirable norm to which one should conform. 

My anger is justified. The behaviour of those who tormented me, who torment Alex and so many thousands of others ( pay close attention to the number of teens committing suicide today who self identify as ""outsiders") is despicable and without excuse. It is not only the childrens'peers, but youth counselors, scout leaders, school teachers and other adults as well who perpetrate this culture of contemptuous judgement and violence.  Those who cannot  or will not conform to the mindset of utter conformity- often because, as a result of öur ""disorders"" , we can see through this horrific pattern and choose NOT to be a part of it-;sometimes because our wiring is such that we don't know HOW to be conformist , cruel, vicious, or competitive-  are never given an opportunity to succeed in the world around them. And that is incontrovertibly WRONG from any perspective. Medications and therapy are not the solution. Tolerance, compassion, and celebration of differences will bring healing where forced medications never will.  

As for Alex, Lord bless him, I see nothing whatsoever extreme in his behaviour. I see justifiable rage.  I see pain. I see intense frustration. And, tragically, I see self- loathing. This lovely young man seems to have assimilated the point of view of his family, teachers, peers, therapists that there is something ""wrong"" with him. It makes me want to weep. 

AS and FAS do someteimes excacerbate anger and make it difficult to manage, but where is rage NOT being expressed in our society today? Throwing an item across one's room does not mean an individual is having a ""meltdown,"" for instance; it is a safe way to ventilate, without doing harm to oneself or others.Might I add that the buzz word ""meltdown"" is in itself  a terribly judgemental label to attach to anyone.  

 And let's look at anger in American society for a moment.  Why is it acceptable for parents to beat their children? Why is the brutal and vicious "sport"of football essentially worshipped ? Why is it acceptable, even laudable, for John Wayne or members of Bonanza's Cartwright Clan to get into a bar fight on television when defending an under dog- but not acceptable for someone like Alex to express justifiable anger in defending HIMSELF? I could touch on the implications of this society of violence in regard to war, but that's another subject, and Michael Moore, God love him, does that most admirably, so I will leave that to him. 

I am very SADDENED to hear that you are utilizing medications so that your son will ASSIMILATE into  society. My sense is that your son, Alex,and so many others would truly blossom if they could be placed in alternative , wholistic school and counseling environments which incorporate natural and organic therapies , inculculate a deep understanding of gentle, loving spirituality into the children, and which allow for the expression of our differences and diversities.There actually are institutions which cater to the needs of those with differences.  Finally, I am deeply concerned that you want your son to ""assimilate"" into a society such as ours is at this hour in history. 

You might want to think about reading   that classic novel 1982 as well as the book Farenheit 451. 

Quote From: janetellen

 We have found that there are three things that help our lives with my AS son:

1. Make sure he feel's safe.  There are many things that make him feel unsafe such as being alone, his sister's dolls ("their eyes look spooky"), walking by the chorus room at school, walking past a group of people, and many more things that I can not imagine.
2. Make sure he doesn't have any sensory issues.  All of his clothes are loose and comfortable, he never wears shoes unless he has to, he always wears his socks inside out.
3. When asking him for something, try to put it in the positive instead of the negative.  I knew this, but I was reminded at his IEP meeting last week when his RSP teacher mentioned that this technique worked better.

We have found that often when he has a melt-down or doesn't want to do what is requested, there is a reason - it's just not something that's evident to us non AS people.  When I get him to talk to me about his decision making process, which isn't often, it's amazing to me all of the steps he has to go through just to do a simple thing.

Janet

Quote From: myboys0103

  

  

                     I just want to say to Alex Thank You  for being so incredibly brave and helping all those people out there to underatand what thier children are feeling I give a ton of credit to you and thank you for opening up and sharing your experience with the world on what it fells like to have aspergers 

Quote From: accoping

Please visit us at the AS Partners Forum. There you will find others who will understand, people in your same situation who can give you some support. You can use the same material you just wrote for this message board and cut and paste it into a new thread in the "Introduction" folder when you arrive. It's http://forums.delphiforums.com/ASPartners. We'll be waiting to welcome you there! AC

Quote From: b1b2bush

Seeing is believing and I have seen it and believe it. Disease, disorders and conditions that people have may be due to nerve interference. Medications only cover up  the problem (like a band-aid).  The atlas and the axis (the first 2 vertebrae in your neck) are at the brain stem and if there is nerve interference, this most definitely would cause disease, disorders, pain in the spine etc. Chiropractic gets to the root of the problem, removing the nerve interference so that the body and brain can function the way it was designed. Chiropractic is natural and a corrective health care system. It won't cure the disease, disorder or condition but will get to the underlying problem. 

  

Just being born, the force, twisting of the neck, etc....can cause nerve interference as well as anyone that falls, struck, auto accidents and etc. Injuries that happened years prior to any recent symptoms may be the cause of current problems. Go natural, what have you got to lose....nothing.  Think of what you can gain in your life. Educate yourself about chiropractic www.chiropractic.org 

Quote From: medusa729

Hi Lynn, 

  

I don't remember the name of the Doctor but I think you can find him on a site at www.brainmattersinc.com  I remember hearing him talk about it. Hope this helps. 

  

Sincerely, 

Deborah 

medusa729@yahoo.com 

Quote From: shawood

My heart goes out to Alex and his family, as my own son who is now 14 was just recently diagnosed with PDDNOS, which has alot of similarities to AS.  We are still fighting with our insurance company in order to get treatment after being in the 'mental health' system for over 7 years.  Finally we have more information, but no one willing to help.  Our area in Ohio is too far behind, to say the least. 

Our family has suffered enormously, and it is only by the grace of God that my son is still alive and that our marriage has endured. 

To finally hear others, especially Dr. Phil, addressing this is a relief. 

  

On we go. 

Quote From: godsey

Thank you to the family on todays show.  I have a nine year old son that has been diagnosed with several different disorders.  We did get a diagnosis of "possible Asperger's" at one point and started reading up.  Everything down to the trouble with fluency in speech fit my son.  I finally felt like we found something that was going to help put us on the right track.  Instead it has been hard to get doctors to agree.  One says OCD, one says Gen. Anxiety and another says personality.  It is so frustraiting to know your child when no one else does.  I worry about the teen years as we have a hard time living day to day now.  When your son spoke I felt like I was listening to my son in 6 years.  He sounded like him, my son often diferenciates between the feelings on the inside vs. outside.  When dad said that sometimes he can understand teasing and sometimes he can't-that was the first time someone acknowledged that these kids are not the same every day.  That made me want to cry and write to say thanks.  I hope that someday we can get in with the Brain Matters group and find a way to make my son's life better.  Thank you so much for your story.  I would love to find some other parents that deal with this kind of stuff to vent to and listen to.  There is no support group for this disorder near me.   Thanks Dr. Phil for this show.  I learned more listening to that boy than I have in all the books I have read. 

kc 

Quote From: annabn

I watched the show to see how Aspergers would be presented.  I was shocked.  The punch of music with regard to "rage"  "outbursts" sends the wrong message.  My son was diagnosed at age 14.  He is now 22 yrs old, in college and will be getting his associates degree in May.   

  

When my husband and I first heard the word "autism" I just about fell out.  I couldn't believe it.  For the next three years, we went into family therapy.  Thank God we had good insurance.  The doctors tried prozac, wellbutrin.....and our son refused to take medication.  Said he didn't need it.  We listened to our son.  He was right and has been med free almost 5 yrs.  We didn't  put him on any goofy diets, gluten free, or that crap.   He ate what we ate.  We didn't put him on massive doses of vitemins or minerals either.  We accepted him for who he is.    

  

His personality is made up of Spock, Data, Monk, Rainman and yes,.....Bill Gates and Albert Einstein.  No, he will not light up a room when he walks into it....."if" he walks into it.  He makes no bones about his desire to be "alone".  It is "his" happiness, just like our is to be the center of attention.   

  

We were worried when he sister said he was picked on in school.  He never told us.  When I asked him about it, he said, "They don't clothe me, feed me, put a roof over my head, nor do I live with them, why should I care what they think".   Hmmmmmmmm....sounds "logical" to me. 

  

It wasn't until the video game craze was in full swing, did the kids at school went out of their way to check my son out.  He is the modern day, "pinball wizard" of video games.   He took several HONORS classes in high school, but found poetry and literature a bore and struggled to pass them in the regular curriculum.   Because of the way he thinks, he cannot respond to "how do you feel" questions.  How he feels is not as important to him as it is to us.   

  

He was called all kinds of names in high school.  He enjoys college because he said the students that are in college, want to be there.  High school is social club.   

  

We were told he could get SSI supplements.  When we sat him down and explained what SSI was, he said, "Why should I get money, if I didn't earn it?"    Another "logical" response.   He got a part time job, and paid for his summer semester.  He drives, and makes his own car payment and pays for his own insurance. He knows AutoCad like the back of his hand.  We praise these accomplishments, all done without drugs, without SSI, without changing who our son truly is.   

When his job ended in October of last year, we noticed that he did "feel" something.  When pressed, he said he felt bad that his father and I had to pay for everything again.  I almost cried. 

  

Like the mom on show, I could relate to the lying around in bed all day.  That is part of it.  The isolation.  It is a comfort zone.  One thing I learned from my son, was..."don't make "feel" things....I don't"....  If he answers a "how was your day......??? with FINE.  Let it go.  He will not elaborate and fights ensue when pressed.  I have learned not to press.  It is difficult, but I give it my best try. 

  

I have asked my son, Do you know any pretty girls?   He responds, "mom, I have nothing to offer a girl right now.  I am in school, I need to get a job, besides, dad says girls are expensive, I have plenty of time, at least 60 yrs."    He has such a dry, sarcastic sense of humor and knows how to push my buttons....lol. 

  

I know someone who has a son, just diagnosed with AS.  She has him on one of those goofy diets.  I told her to stop wasting her time and love her son for who he is.  I told her she is going through, "I don't want other ppl to thing my kid is weird"...stage.  I told her that somewhere, Bill Gates' mother is smiling.