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| Name: Debbie | Date: Jul 21st, 2005 7:09 PM |
| Hi Dolly, Since no one has responded to my posts, I thought that I would respond to yours. The adult you are talking about...may I ask, is he your son? I certainly don't mean to pry, but I have a son who is autistic. I would love to chat on this forum! Sincerely, Debbie ↑ |
| Name: DOLLY | Date: Jul 23rd, 2005 11:22 PM |
| HELLO YES, HE IS MY SON AND IS 27 YEARS OLD....HE HAS COME A LONG WAY, BUT STILL HAS ISSUES, SAND COMPANIONSHIP IS A REAL ISSUE. THANKS FOR ASKING ↑ |
| Name: Debbie | Date: Jul 24th, 2005 12:34 AM |
| Hi Dolly, My son is 15 years old and he too has come a long way ! He will be starting high school soon. He has always been mainstreamed in school with little modifications made. He is also in the school band. I wish they had these "chat" type forums when my son was younger. It really would have helped with the usual feelings of isolation. My husband and I just did what we had to do...early intervention and so forth. Does your son drive? We are not ready for that yet!! The companionship issue is a difficult one. Maybe your local chapter has a meeting for adults with autism. They do where we live. Sometimes they offer classes/get togethers for adults. Well, take care!! Debbie Take care ↑ |
| Name: usman | Date: Aug 3rd, 2005 2:11 PM |
| hello ↑ |
| Name: candis | Date: Aug 5th, 2005 5:44 PM |
| I work for an agency that provides support service to adults mental disabilities. One individual is an autistic female with cerebryl palsy. Looking for program ideas and other resources. ↑ |
| Name: Mandy | Date: Aug 14th, 2005 8:00 AM |
| hi ↑ |
| Name: jayde | Date: Dec 27th, 2005 7:56 AM |
| hi i would like to talke to someone ↑ |
| Name: Pat | Date: Jan 18th, 2006 2:46 AM |
| I also have a 24 y.o. autistic son w/dual diagnosis of OCD. Would love to chat with those with similar experiences. ↑ |
| Name: KAREN | Date: Jun 20th, 2006 5:12 PM |
| HI DOLLY, I HAVE A 20 YR. OLD SON WHO WILL BE GRADUATING NEXT JUNE 07, HOW DID YOU HANDLE SCHOOL COMING TO AN END? HE LOVE SCHOOL AND IS TERRIFIED ,SCHOOL HAS BEEN HIS LIFE SINCE HE WAS 3 YRS OLD. HE THINKS HE MUST HAVE SOMETHING VERY BAD, TO HAVE SCHOOL TAKEN AWAY(IT BREAKS MY HEART) SCHOOL DOES NOT GET IT! ALL OF OUR LIFE LONG FRIENDS AND FAMILY HAVE EVAPORATED. TELL ME HOW ARE YOU DOING DOLLY? KAREN ↑ |
| Name: Curtis | Date: Jul 6th, 2006 1:45 AM |
| Interesting forum. After all, they don't remain children forever and as they age into adulthood many other diffrent problems will come. At this time, our 22 yr. old autistic son is having serious problems with panic disorder and anxiety which has also deveoped into agoraphobia. ↑ |
| Name: karen | Date: Jul 7th, 2006 7:26 PM |
| hi curtis, did this get worse when school came to an end? our son just started his last year of school on wed. and he is flipping out, he's unraveling and it is triggering his obsessing big time! what is agoraphobia? gratefully ↑ |
| Name: KAREN | Date: Jul 7th, 2006 10:24 PM |
| Hi pat of jan.17,06 I'm karen of june 20,06 would love to chat with you. how does your son obsess? our son is 20 and he collects and carries in a note book and backpact(everywhere) he also shaves his face, chest, belly,arms and hands until he bleeds. he is between 5 and 7 yrs. mentality, just a little boy, but is trapped in a 20 yr old's body. he does alot more than that as well. tell me about your son gratefully,karen ↑ |
| Name: nicole jones | Date: Jul 10th, 2006 4:30 AM |
| agoraphobia is a fear of unfamiliar people or the outdoors in general. it's social anxiety disorder in the clinical and severe form. ↑ |
| Name: KAREN SCHIMPF | Date: Jul 10th, 2006 3:30 PM |
| Hi Nicole Jones, Thanks for the data on agoraphobia. I guess that is what our autistic son has. He won't go anywhere,see anyone,it is like we have been under house arrest for 20 yrs. No friends or family understand how small our world has narrowed down to. We use to love to go on vacations and go camping, engaging withfellow humans. We can't keep the same pace but we are the same people. We miss them all! Thankyou Nicole for taking the time to answer my question Gratefully, Karen Schimpf ↑ |
| Name: jude | Date: Jul 19th, 2006 12:19 AM |
| hi i have an autisic daughter 18 ........she also for past 2 years has depression and anxiety.....doenst like to leave the house either.......doesnt want to do anything but watch reruns on tv...used to go to movies, go outside, computer, now nothing hates beeing a teen she say......wish she could be a kid......its taking a toll on me being in the house.......she used to go to camp now this summer she couldnt deal with it.....thought the yonger years were hard at times this takes the cake.......jude ↑ |
| Name: Curtis | Date: Jul 21st, 2006 2:26 AM |
| Yes it is very tough, at least in our case, when they get older. Our 22 year old son has always been not as much trouble as we had expected but a year ago, behavioral changes came with the exteme panic anxiety disorder that came over him within a few days. He went from being a happy young man to a sad and miserable young man. We also now find ourselves almost trapped inside our house, except for going to the store, work, etc. All the things he used to enjoy doing-going to the park, the stores, the movies, travel to different cities he can no longer do. Sometimes he's fine but something triggers inside him and like a 30ft wave of water, he is suddenly and unexpectently swept away by extreme sensations of anxiety and panic. He also appears to be regressing in that he has once again started to become noise sensitive to certain sounds. we have not seen this problem since he was around 14 years old. It is very heartbreaking to watch his world begin to shrink around him. Also tough to see what effect this is also having on our family, including his younger(non autistic) brother. Very tough to deal with at this point. Going from doctor to doctor. ↑ |
| Name: KAREN SCHIMPF | Date: Jul 21st, 2006 6:17 PM |
| Thur.July 20,2006 2:00p.m. Hi Curtis, Two years ago when our son Cilff (downloaded the data, when you graduate... you don't come back, it triggered a wave of panic attacks, including staying in his room, shaving face,neck,chest,arms,head until it bleeds.Staying awake even longer sometimes all night. Talking loudly day and night, even out in public. He's unraveling before our very eyes. He said two years ago, "NO GRADUATION!!!!" Everyday he confirms that and we can see him GRIEVING the loss of school, like a death of someone you love. When our son graduates next June2007 I expect him to be right about where your son is now, only Cliff started the grieving process, way before graduation hit. Maybe just maybe, your son is GRIEVING the the loss too. Could it be? I want you to know from a family who is living the same as you are each day, WE HEAR YOUR FAMLIES PAIN. Please let us know how the testing goes and what you think about what I've said. Gratefully, KAREN SCHIMPF ↑ |
| Name: KAREN SCHIMPF | Date: Jul 21st, 2006 6:25 PM |
| Thurs. July 20,2006 2:25 p.m HI JUDE, I'm sorry you are going through so much. I'm so glad you found this site. A burden shared becomes half the weight. Would love to say, "HI" from time to time. Write when ever you want to talk. Gratefully, KAREN SCHIMPF ↑ |
| Name: Curtis | Date: Jul 23rd, 2006 4:08 AM |
| Karen, our son's school days were not as good as your son. His elementary school years were somewhat ok but high school became a living nightmare for him. The school district in my area put him in the high school I graduated from which is now the worst school for violence in our town. He was bullied, tormeted with things done to him by kids(boys and girls) in school that to this day I cannot even think about it without becoming angry at how cruel kids can be to a person who has a mental disability. But then again, there is so much negative things now in our society directed towards people with mental disability that people consider cool and cute as well as funny. The word "retard" is even said jokingly in movies and TV without any regards for the pain that word causes to both the person suffering the disability and his family. When my wife and I stepped up to protect our son we were made the evil people by the high school principal and his cronies because they could not stop the harrassment my son was experiencing. I finally removed him from high school after a lot of emotional damage had been done to keep him from going over the edge. Perhaps he is suffering some form of post tramautic shock from his horror high school days, we don't know. All I know now is his panic attacks along with his head feeling full and strange feelings in his head are quickly pushing him into an area that is becoming very frightening to watch. We have taken him to doctor after doctor, had MRI, EEG, blood test. Have traveled to over 200 miles to have him evaluated and still no definite answers. We are now going to a DAN doctor this Tuesday near Philadelphia who has a good reputation with the ASA in Philadelphia. Hope we find some answers there. If not, we start the search all over again. My wife is a saint in handling and helping our son but I can see the toll it's starting to take on her and also our younger son who loves his brother but is scared to witness when he gets somewhat agressive. It's just so sad that fate has dealt all these children, adults such an unfair, heartbreaking blow in life. But still we push on. I wont stop until I'm in the ground trying to help my son. ↑ |
| Name: KAREN SCHIMPF | Date: Jul 24th, 2006 4:02 PM |
| Mon July 24,2006 12 noon Hi Curtis and Family, Please forgive my ignorance. You are right, I still feel the sting of pain from my school days and I'm 60. How could our kids ever stand a chance against that... they couldn't. Last fall 2005, our son 20 was sick and was put on Keflex. During our nightly routeen of scratching his arms and back, I noticed his rt. arm seizuring. Next day I called his doctor and she said,"stop Keflex right away and it will go away," Three days passed and I looked to make sure it stopped, but there it was! The harder I looked the more my son tried to hide the seizure from me. "Cliff does your arm move all by itself sometimes?" Yes he nodded. The fact that he was hidding it from me, alarmed me! How long had this been going on? The antibotic didn't cause the seizure... but it did intensify it... I saw it with my own eyes! The next morning-Bill off to work and Cliff off to school, I ran to the computer and typed in AUTISM/SEIZURES as a lark. It was no lark and it said Seizues were usually undetected by even parents! This blew my socks , not only off but right across the room!!!! Twenty years into autism and No doctor,teacher,case worker, parent had ever passed on that data. When I asked his case worker, about the article about 30% of autistic children develop seizures she replied, ' we were given the data 50% develop seizures and it usually doesn't show up on these kids.' We rushed him to a nuroligist who ran a eeg and it showed nothing! 'but I can see it with my eyes every 3-4 min!' 'No meds at this time. Just find a phycoligist and he'll put him on the same meds for nerves as I would have for anti-seizures.' 'Do you know a doctor?' ' No just look one up in the phone book.' Should he have more testing.. you bet! Will he... No way! I wish we had known this important piece of data 6, yrs ago (around puberty) for around that time our son rounded the courner, and attacked me(the first of many times) He got real loud, rounded the corner, face and head ,(on fire he said) screaming at the top of his lungs, then he attacked me! He seemed absolutely terrified and mortified afterward and is so each and every time. Each time there was an episode, we were able to link it to red dye #40 and blue dye#1 and 2. up til last fall we believed he was having an allergic reaction but now, i think it was... an intensifiing of the seizures! The poison control center told us, for an allergic reaction us CLEAR LIQ. BENEDRYL, wait 20-30 min. WE CARRY IT WITH US EVERY WHERE DAY AND NIGHT! You said you are going Tues. for DAN. What is that? and what is ASA ? Please let us know how you make out. We wish you answers to what is happening to your beloved son. Gratefully, Karen Schimpf ↑ |
| Name: curtis | Date: Jul 30th, 2006 6:30 AM |
| Karen, Thanks for sharing your story about your son. I gives my wife and I something else to look into. We also had an EEG done on our son but they found nothing. We may have to arrange for him to have an overnight eeg just to rule that out. He has nervous tics and twitches and tingling sensations in his head. Here is a link for you and everyone else regarding DAN(Defeat Autism Now) medical practioners. http://www.autismwebsite.com/ari -lists/danus.html#Peter_Prociuk_%20M.D..html I will explain what they are and what they do. In a nutshell , DAN doctors and followers are a base of physicians who wish to employ rational, scientifically sound approaches to the diagnosis and treatment of autism, and who regard psychoactive drugs as their last choice, not their first. We were lucky to find a very good psychiatrist who is a bit of a rebel and has studied and researched autism for over 30 years about an hour's drive from our home. A very knowledgeable doctor who uses drugs as a last resort instead of a first resort. DAN way of thinking came from Bernard Rimland in California who runs the Autism Research Institute there. Also, you gave us another clue regarding your son having allergic reactions to the red and blue dyes used in some food. We have long suspected he is allergic to these. Just wanted you to know that we are praying for your son too. I'm 56 years old and as you know, it's been a long hard road that just never ends. ASA stands for the Autistic Society of America which is an old national organization that was started to do many things for autistic children and adults. I'll keep in touch. Curtis ↑ |
| Name: George B. | Date: Jul 30th, 2006 10:27 PM |
| Sun July 30, 2006 600p.m. Hi curtis, It's me Karen Schimpf. I don't know what happened but after I read your message, I tried to respond but couldn't . I called my brother in n.y. state and he tried this site and got through but now it comes up as GEORGE B. instead of me Karen Schimpf. I'm going to try and find out what happened, until it's fixed look for my response through GEORGE B. You and your wife have been doing this 22yrs. now, did you know about seizures? Our son's case worker said it doesn't seem to show up on our kids e.e.g and it didn't, but I can see him seizuring on the rt. side,every 3min. Next they want him in the hosp. for 24hrs. I don't think our son would handle that very well, would yours? Wish we had a good psychiatrist! How did you ever find him? Where is he located? We live near Toms River,N.J.(in the middle of N.J.) Did you ever ask him about seizures? Alot of people don't even know there are so many types of seizures and don't know what they look like. How is your son doing right now? Does he go to a day program? If he does, does he like it there? What do they do at a day program? When your son is home, what does, he like to do with his free time? I started a chat room for parents of autistic children in their teen,20's, 30's,etc. (on this same site) You can read what I wrote today about our son (at 22), just started singing in his room, perfect pitch and words! Loudly. My husband and I were amazed!!! Let us know how you are all doing, Gratefully , KAREN SCHIMPF ↑ |
| Name: KAREN SCHIMPF | Date: Aug 1st, 2006 7:37 PM |
| TUES. AUG. 1,2006 3:30PM HI CURTIS, I HAD TROUBLE AT THIS SITE WHEN I WAS TRYING TO RESPOND TO YOUR E-MAIL. I SEE YOUR NAME IS IN RED NOW, SO YOU MUST HAVE HAD TO REGISTER. WHEN I TRIED TO LOG IN I FORGOT MY PASSWORD AND COULDN'T WRITE YOU BACK. I WAS SO UPSET AND TOLD MY DAUGHTER IN FLA. SHE SAID POST YOUR E-MAIL SO YOU CAN BE REACHED THAT WAY, JUST IN CASE. [email protected] HAVE A NICE DAY, GRATEFULLY, KAREN SCHIMPF ↑ |
| Name: curtis | Date: Aug 8th, 2006 7:22 AM |
| Dear Karen, Sorry for delay. Yes, I had trouble responding to you and had to register. Our son had two good weeks with no panic disorder but tonight that ended. He had a very bad anxiety and panic disorder attack. Was very agressive. We found a very good psychiatrist named Dr. Leander T. Ellis, MD who is alos involved in ecologic medicine. He attempts to find the biological causes for the triggers that make autistic person become agressive, panic stricken and sometimes violoent. He has been studying autism for over 30 years and he has studies that many autistic people are triggered by an over release of adrenalin that sets up a chain reaction in the brain when they cannot shut off that adrenalin. Although he does prescribe medication he tries to use other methods such as the DAN methods and possible food allergy reactions and heavy metal poisonings, etc. He has been in medicine since 1960. He is a very intelligent doctor and we have been trying some of his treatments which appeard to work until today. We believe our son had a relapse because he ate food that he is allergic to. We knew he had allergies to certain foods when he was about 4 years old but thought he had outgrown them. Some of Dr. Ellis' treatments are not accepted by mainstream doctors but when you talk to him, he makes a lot of sense plus his 30+ years researching and treating both autism and other psychological disorders. His contact info is: Dr. Leander T. Ellis, M.D. 610 866-8611 He has an office in Philadelphia, Pa. but also maintains another office in Bethlehem, Pa. You can type his name in either Google or any web search and come up with info on him. He also has a book titled "Health Quests" that gives some of the treatments he has done with patients over his career. Regarding my son's interest, his big interest is computers. He is extremely computer literate. Far more advanced than I am. He also loves sports, used to practice Tai Chi the Chinese exercise, likes to jog in our town's park which has a running track. My wife and I and our younger son are very broken hearted to see him suffering from his panic disorder. We know he feels very bad once he gets aggressive, the same as your son. So we are trying everything and anything to help him. We're hoping Dr. Ellis can help him but the treatment takes a few months to begin to eliminate any of the allergies such as too much wheat, whey, barley, milk, glutton(wheat products) and casein(milk) which seem to set him off into panic disorder. We are also going to get an overnight eeg to totally rule out any seizure activity as well. We are also getting him tested by an allergist for exact food allergies he may have to corelate with Dr. Ellis. sorry if I'm rambling on but hope some of this helps. My wife and I are in our 50's and we hope we can help him. Get's harder as the years begin to pile up on you but we try to push as we did when we were younger. I'm 56 at this time. Curtis ↑ |
| Name: Cathleen | Date: Aug 8th, 2006 3:35 PM |
| I have an 18 year old autistic son. He is 6'2" and 250 lbs. He watches Teletubbies and Barney every day. He also loves sports(football, baseball and race cars). He loves 60's and 70's music (lucky for me). He cannot complete a full sentence. He will always be this way. He is very well behaved and loves to swim and ride a bike. He cannot be left alone in the house because he is extremely autistic. ↑ |
| Name: KAREN SCHIMPF | Date: Aug 12th, 2006 12:55 AM |
| FRI AUG 11,2006 8:30 pm Hi Curtis and (Terry?) Thanks for e-mail on my site. Yes it breaks our hearts to see our sons in such panic and so sorry afterwards. You said you think it was an allergic reaction to a food, (What foods sets him off, please tell me the food he was eating each time?) Does it happen each time he eats that food? What exactly does he do when he goes into a panic/allergic reaction?) Does he attack anyone he is near or does he mostly loose it at home only?(like Cliff) I just want to compare it to what my son does. My son's name is Cliff what is your son's name? So he loves the computor like Cliff does and since Cliff is about 5-7yrs old mentally, he loves first grade and second grade math games, what how old mentally is your son and what does he do on the computor? Our Cliff loves sports too(he plays soccer,baseball, basketball,and really loves bowling! I think that is great your son will jog as well, I wish Cliff would, he'd get away from us,( that's why we can't ride bikes anymore!) I don't want to leave out your yonger son, This must be very painful for him! How is he coping with all of this? I am 60 and my husband is 63 and as you said, we are getting alittle tired (like our batteries are running low!) The massive strenght we had is fading but we push onward everyday! Do you think your son will submit to a 24hr EEG? If he goes for it please let us know how you made it through. Did you see my comment about Cliff singing at the top of his lungs? (on this site under CHAT ROOM FOR PARENTS OF AUTISTIC TEENS,20's,30's,etc) My husband and I are so grateful to speak with another family who is living the same life we are and I hope we can be a support to you and yours. Best wishes to all! CHEERS, KAREN SCHIMPF ↑ |
| Name: KAREN SCHIMPF | Date: Aug 12th, 2006 1:18 AM |
| FRI AUG 11,2006 9:20pm Hi Curtis it me Karen, I forgot to ask, Can your son phy.speak? Does your son speak? Gratefully, Karen Schimpf ↑ |
| Name: curtis | Date: Aug 12th, 2006 8:16 AM |
| Karen, Yes our son is verbal. He didn't speak fully until around 7 years old. He has a pretty good vocabulary but has that particular lisps in the way he talks. I would say he might be around 12-13 years old in his mentality. And like your son, he doesn't have outburst in public. When he feels a panic trigger coming on, he will start pacing around and come to me to ask me to take him out to the car. As stated, before August 2005 when these extreme panic disorder/anxiety attacks started, he was a fun loving, jokative young man. His condition is taking a very heavy toll on him. He is like a different person. He tells my wife contstantly that these panic attacks and the feelings in his head are making his life miserable. He now becomes very destructive in the house and today tore up a box of tissues while inside my car. My wife is an emotional wreak at this time. She has been crying for days after holding it inside for over a year. It seems that there is no end in sight. His younger brother is very depressed and nervous regarding his brother's current situation. Right now it is a very tough time for our family. Our son's name is Curtis Jr. He's a very smart guy but this affliction is piece by piece ruining what joy he did have in life. It affects me also but I have to be the one to keep everyone from falling through the cracks so I don't let anyone see me when the tears start flowing and my mind gets so overwhelmed that I don't know what to do. To answer you other questions, Curt like to creat computer games and do artwork on the computer. He is mostly into fantasy art. At this time, he has never attacked anyone in the family but has shown very scary aggressive outburst. Such as tearing up newspaper, throwing books, jumping up and down on one of our couch pillows that my wife designed and sewed. It is now ruined. Also kicking his legs continously against his bed while lying down. He tells his mom that he can't help doing this and he wants this to stop. Very heartbreaking as you and your husband know to have to stand by and watch your son do these things and nothing you can say will make them stop. And yes, I did read about your son singing. Mine likes to put on music and jump up and down like a Watusi Warrior in a pogo stick like fashion to the music which shakes the entire room when he does it. Take care.. Talk to you again. Curtis My son says he can take the 3 to 7 day hospital stay to have the seizure monitoring done. He will have to have it done in Philadelphia and stay there for seven days possibly. Hopefully they can find something. Our other large problem is that part of the reason his symptoms have increased is because of the medicine our family doctor prescribed to treat his panic disorder. He was given Ativan which is a type of tranquilizer but has very, very bad side effects, some which include anger, irritability, aggression, increase in anxiety, although that is what is suppose to treat. We now have to find the proper method of detoxing him off this drug because it is playing havoc with his brain. I hate to say it, but doctors, no matter how well meaning, have been part of our problem because of misdiagnoses and medicine that doesn't help him but is actually no good for him. ↑ |
| Name: KAREN SCHIMPF | Date: Aug 13th, 2006 5:56 PM |
| SUN AUG 13,2006 1:45pm Hi Curtis and family, Your son sounds more advanced than our Cliff, if he is 12 yrs old mentally. So is that like 4th or 5th grade level? You said Curtis likes fantasy art( what is that? Is it a computor disk or program,if so can you give me the maker and where you were able to but it, (Cliff loves art and I want to encourage it whenever I can) Does your son form sentances or does he speak in few words at a time? How did it go from a 24hr. test in the hospital to 5-7 days...WHY? With our son, once I found out that 30-50% of autistic kids develope seizures, when I really studied Cliff, there they were, on his right side only, arm and leg, every 3min. Have you or your wife studied Curtis, I mean looked really hard for any type of movment or twitching of any kind? I was shocked to see it right under my nose, for no one ever said a word to us...like..."What about seizures!" How often does Curtis have these attacks? How long do they last? Have you ever tried Clear Liq. Benedryl and waited 20-30min? It works for Cliff, what if it would work for Curtis? Anyway I hope just talking and even venting helps you, I know we feel helped by you! Best wishes to you all! Karen ↑ |
| Name: curtis | Date: Aug 26th, 2006 9:40 AM |
| Karen, Sorry for delay but our son up and down. Right now he's being weaned off a perscription drug called ativan which is causing him very bad side effects. Our doctor was trying to help him but unfortunately the help caused much larger problems. We did find a natural supplement called Pure Calm that is non addictive and is helping his panic attacks a little. I think it would have helped more if we had found it sooner and not put our son on this horrible med called ativan. Right now he has good days and bad days. Some of his behavior is really upsetting the household. My wife is now very nervous as is our 14 yr. old son in watching Curt Jr. when he gets a bit out of control. Hope things are going well for your son, you and your husband. The sad fact is that at times this becomes quite a bit overwhelming and the fact that we are not in our 20's anymore and don't have the energy we once did when Curt Jr. was younger is both sad and scary for us. We just wish he was the same happy young man he was over a year ago and not the tortured sould he has now become. Regards, Curtis ↑ |
| Name: curtis | Date: Aug 26th, 2006 9:48 AM |
| Karen, Thanks also for advicd about benadryl. We will also give it a try. Curt has sensations inside his brain every day. He also has a lot of noticeable facial tics and twitches. Curtis ↑ |
