Replies to '01/17 Extreme Disorders'
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January 15, 2006, 9:01 am PST
 Quote From: karen_kiki Alex can be the most wonderful young man and very much in control however when his meds don't work, or he oushes the therapy out of his brain, which is not always aware he is doing it, he will have these fits, rages and creates complete disruption in our lives, that includes his own.
Alex is a very smart young man and very talented. He has so much potential but our fear in life is that one of his rages will bring that all to a halting end.
As any parent wants the best for thier child so do we.
We hope that you will find some answers in our story and that we can continue to email and contact each other. We are not alone and we and our children deserves answers as well as support to make it one day at a time.
My thoughts are with you as we take this journey in life.
I met someone a few years back who chose not to be my friend. Her reason was that if we didn't have Special Needs Children we would not have met or had anything in common, and she didn't want our children to link us together. I feel very sad for her as friends are important in life, and friends who understand and care are invaluable. I am reaching out to be your friend as we all need support.
Karen That is unfortunate about your friend not wanting your children's disabilities to link you together, I have met new and wonderful friends because my daughter has autism, people I would not have met otherwise. Best wishes to you and Alex. I will be taping the show on Tuesday...
Rhonda mom to a 5 yr old girl with autism http://groups.msn.com/AutismSpectrumDisorderSupport
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January 17, 2006, 9:50 pm PST
Quote From: karen_kiki Alex can be the most wonderful young man and very much in control however when his meds don't work, or he oushes the therapy out of his brain, which is not always aware he is doing it, he will have these fits, rages and creates complete disruption in our lives, that includes his own.
Alex is a very smart young man and very talented. He has so much potential but our fear in life is that one of his rages will bring that all to a halting end.
As any parent wants the best for thier child so do we.
We hope that you will find some answers in our story and that we can continue to email and contact each other. We are not alone and we and our children deserves answers as well as support to make it one day at a time.
My thoughts are with you as we take this journey in life.
I met someone a few years back who chose not to be my friend. Her reason was that if we didn't have Special Needs Children we would not have met or had anything in common, and she didn't want our children to link us together. I feel very sad for her as friends are important in life, and friends who understand and care are invaluable. I am reaching out to be your friend as we all need support.
Karen Hello. I watched this episode on Dr. Phil today. I understand very much on what it is like to have neurological disorders. I can tell you that I know and understand exactly what it is like. With Asperger's Syndrome, I oversee and face many issues myself. Although, I do not suffer with sudden rages at times, I usually do not always feel right at other times. I usually have a difficult time communicating certain thoughts and feelings, and I am not always confortable communicating with other people, especially in large groups, and busy and noisy places. And I also am terrified of crowds. Usually when I am not happy with a certain situation, I will try to solve my problems by sitting in my room all day, at other times, I will think things over. I have watched this episode very clearly and I just realized that people with this disorder have different ways on handling the issues. After, watching the show, I still was able to understand the differences. I think that Alex is a very intellegent individual. I believe that in disorders that there are a negative side, but usually I try to forget about the neagtives, also there is a highly positive side. Individuals with Asperger's Syndrome are much more intellegent than other people. The IQ's are at least 20% higher than average as from what I know. For me, I am so excellent at computers, writing, geography, and design. What strenghts would you say does Alex have? How does he do academically and in school? Also, I would like to say that people, in history, and even today-- there have been a few people that I've learned about that have had Asperger's - and they are excellent at what they did in life, in history, believe it or not scientists like Isaac Newton and Albert Einstein and Microsoft Chairman Bill Gates and a few other very famous people have had Asperger's. They have accomplished so much in life. I think all people and I think that Alex have a very good chance to lead a successful future. What does he want to do when he is older, in career terms; ie. computers, technology, science, directing, business, etc.? There are absolutely plenty of positive things for Alex's future. I wish you, your husband and Alex in a highly successful future. |
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January 18, 2006, 10:47 am PST
Quote From: karen_kiki Alex can be the most wonderful young man and very much in control however when his meds don't work, or he oushes the therapy out of his brain, which is not always aware he is doing it, he will have these fits, rages and creates complete disruption in our lives, that includes his own.
Alex is a very smart young man and very talented. He has so much potential but our fear in life is that one of his rages will bring that all to a halting end.
As any parent wants the best for thier child so do we.
We hope that you will find some answers in our story and that we can continue to email and contact each other. We are not alone and we and our children deserves answers as well as support to make it one day at a time.
My thoughts are with you as we take this journey in life.
I met someone a few years back who chose not to be my friend. Her reason was that if we didn't have Special Needs Children we would not have met or had anything in common, and she didn't want our children to link us together. I feel very sad for her as friends are important in life, and friends who understand and care are invaluable. I am reaching out to be your friend as we all need support.
Karen Karen,
As I watched your story yesterday I felt you were me. Everything you said is what I am going through also. My 12 1/2 year old son, also named Alex, was diagnosed with Asperger's several years ago along with ADHD, OCD, a touch of Tourette's even. My Alex even looks like your Alex! Anyway, my life, like yours, has been completely turned upside down. Everything we do revolves around our son and how he will behave in public. I have two younger daughters who suffer because of their brother's issues. My relationship with my husband is strained to say the least, I am now on antidepressants and I am scared to death. I worry constantly about what my son's life will hold. I worry constantly about how he is doing in school. I dread the phone ringing because I know it is the school calling about another problem. Alex has been terribly bullied for several years. The school tries to help but they are completely incapable of giving my child what he really needs. Alex has voiced his desire to die before. I worry that he would maybe follow through with this one day. He KNOWS he is different. He KNOWS he has no friends. Unlike some kids with Austism, Asperger's children are completely aware of their differences and their inability to do anything about it. Sometimes I think that is worse. People are so cruel. The comments made to me about my son are rude, mean spirited and heartless. Because he looks normal they feel they have a right to say something to me. Sometimes I think if he had a visually apparent disability that it would be easier.
I pretty much knew the minute my son was born that things were not right. He had a traumatic birth with fetal distress, cephalopelvic disproportion, muconium aspiration and oxygen deprivation resulting in an emergency c-section. He cried nonstop for years and never slept. We have come a long way in finally getting this diagnosis but I feel such guilt about not doing more faster. I always replay the "what ifs" in my head. It is a terrible way to live.
Alex at 12 has no life except school (which he hates) and his video games. He likes to go to movies but that is about it. He has been on medications since he was 3. Now he is on Adderall (for his hyperactivity), Celexa (anti-depressant) and Clonidine (because he does not sleep). We tried Abilify for 4 days but the sideeffects were so bad and dramatic that we had to discontinue it. What meds is your Alex on? Oh, another question. After Alex has his functioning MRI, what kind of treatment will they do on him? I would love to do this for my Alex but we have an HMO and they are not very supportive about diagnostic studies such as this. I need to know that there is something else I can do to help my son. When I think about the future I get sick to my stomach. I am very scared. Thank you for letting me get this off my chest. I hope to hear from you soon, Val
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