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| Name: momathome | Date: Dec 5th, 2008 4:32 AM |
| It has been a really long time since I last posted and I wonder how all of you are doing. Steven is still in his home and most the time is very happy, however he has had enough "episodes" to make a plan of action. The beautiful thing is I don't have to practice them except on every other weekend. I got a job last June and I love working. Please post so I can hear how you all are doing. ↑ |
| Name: melissasest34 | Date: Mar 10th, 2009 2:25 AM |
| Hello Karen. My name is Melissa. I have a 14 year old son who has autism. He also had to have brain surgery back in 2005 for seizures. He is non-verbal and is not toilet trained so I have to change his diapers every time it needs changing. I also know what its like to not have anyone to talk to that really understands what you are going through. for a very long time I blamed myself for him having seizures because he did inherit the seizures from me but I had no one to talk to about my feelings so I had to work through those feelings by myself. I finally did get over the very deep depression I was in because of those feelings but it took a very long time. ↑ |
| Name: robyngk | Date: Mar 19th, 2009 3:00 PM |
| Hi, I have 3 beautiful boys 2 of whom are on the spectrum ... my eldest is has aspergers and the second is "just" autistic number 3 is as Im sure as he feels ..... No. 3 .... longing to be like his brothers on the spectrum..... (poor kid ...he is popular at school great grades.... he plays every sport ...very well ... and is sad... well he is the odd one out..... ) we are aussie and would love to chat with anyone..... Im am sooo very happy to have my special ..men.... but sometimes... i feel a little .....lost... ↑ |
| Name: nanny | Date: Apr 5th, 2009 1:23 PM |
| Hi Just discovered this site. Am from Oz and have been Nanny to a sixteen year old Autistic child for the past four years. My 25 year old daughter has been her full time carer for this time and she has wormed her way into all our hearts and we all adore her. she is totally non-verbal and does not know many signs but she can usually make herself understood as she is quite smart. Our problem is that just right now she is going through a really violent and destructive stage, she hurts herself badly punching and biting, she constantly rips her clothes to shreds and we just cannot work out why. This behaviour is the same in school and with her respite carer who has her every second week-end and can start for no apparent reason, one secong she is happily watching Shrek or Wiggles or somehing and the next she is hysterical, screaming and hurting herself, has anyone else experienced this sort of thing? She has also become a nightmare with her sleeping, sometimes she may only sleep for 2 hours in 2 day's and I really feel for my poor daughter who is studying to be a special needs teacher at uni, we have tried sleeping meds but she seems to fight it and then she becomes manic and starts bouncing all round the house. Any help or suggestions that any of you may have would be greatly appreciated. I have enjoyed reading all your comments today and look forward to hearing from any of you. ↑ |
| Name: StudentResearcher | Date: Apr 9th, 2009 2:22 AM |
| Hi, I am currently an undergraduate student at Barry university in Miami and I am conducting a survey for my thesis on "parent's perceptions of the link between autism and vaccinations. I am posting the official letter that was approved by the Institutional Review Board at my University. The online survey is on the Autism Speaks website. I am asking that you please log on and respond if interested to help make new breakthroughs on how parents still feel. Dear Parent, I am inviting you to participate in a research study that is examining parental perceptions of the link between vaccination and autism. Along with this letter there is a short survey that asks a variety of questions about the above mentioned topic. I am asking you to look over the survey and, if you choose to do so, complete it on this internet website. It should take you no longer than 10-15 minutes to complete. Results from the first 100 participants will be used. The results of this project will be used as data for a research thesis. Through your participation I hope to understand the perceptions of the link between vaccination and autism. Should you chose to participate you will complete the surveys online via the internet website SurveyMonkey. Contents of the survey may be emotionally disturbing. Some of the survey items may be considered personal and may cause a slight level of anxiety.If you experience any uncontrollable feelings of anxiety or emotional discomfort please contact 888-Austism-2 (288-4762). Benefits of this study include adding to the body of research on the perceptions of the link between vaccination and autism. Your survey submission will be anonymous and will not contain any identifiable information. Because the survey will be completed online from a home computer, there is a possibility that a participants' IP address may be viewed by the PI or PI’s advisor. Participants’ IP addresses will be erased from all data by the PI upon receipt. The PI and the faculty advisor Dr Linda Bacheller will review the data for analyses purposes. Researchers will not retain any identifying information and the anonymous data set will be stored in password protected data file on the PI’s computer. If the IP address appears in the data set received by SurveyMonkey they will be deleted. The anonymous data file will not be destroyed. Your participation in this study is voluntary and you have the right to refuse to participate, to refuse to answer any particular question, or withdraw from participation. A possible alternative to participation is to not participate. By proceeding with this survey you consent to participate. If you have any questions or concerns about completing the surveys or about being in this study, you may contact me at [email protected] or the faculty advisor, Dr. Linda Bacheller via telephone at 305-899-4576 or via email at [email protected]. The Institutional Review Board (IRB) at Barry University has approved this study. The link is posted on Autism Speaks using Survey monkey software. Here is the link if interested http://www.surveymonkey.com/s.a spx?sm=0cbB4qgG0WIemjcRhUaUww_3d_3d Than k you for you participation ↑ |
| Name: dalia_in_nevada | Date: Jun 18th, 2009 4:47 AM |
| I am writing you this letter in the hopes of some desperate assistance in Nevada. I have a young Autistic adult son, 19yrs old, ( Vincent Ortiz ). I understand the dilema you are going thru. You are not alone. I will be happy to talk to you any time, if anything just to listen and support each other. I will make this brief and to the point. I am a single mom working many hrs 7 days a week, savings is now gone in an attempt to pay on my own for caregivers. My son has severe "episodes" at which he can bite/scratch/pull hair or all of the above. These behaviors all began over the last couple of years and are progressively getting worse.He is 5 foot 10 185 pounds. I am 5 foot 2. I can not restrain him when he attacks. I desperately need HELP now. There are NO group homes or facilities who take children and/or young adults w/ Autism here in Nevada. The state treats Autism like it is a dirty word. I am in fear for the safety of myself and my daughter as we have been attacked a cpl times now without a caregiver here full time. I was thinking there are several folks in the same dilema as myself here in Nevada as well as across the country.. I would like to know if you could : 1.) assist with helping me open a RANCH FOR AUTISM here in Nevada. Pahrump still has land low priced and it's far enough out that folks who don't understand Autism will feel comfy, yet it is close enough for medical needs. I know exactly what these children need to make their life complete and busy with a scheduled routine and space to roam. I know that I could sucessfully provide the care and know how to make it a wonderful structured environment for the children. For instance: an equestrian area music program arts n crafts a green house pool / spa trampoline swings merry-go-round sand box walking paths 2.) help / steer / assist me w/ getting some families together that are looking for longterm placement for their young adults where they will be loved and cared for as if we were there ourselves. Home-like environment with plenty of activities to keep them busy and fulfilled. We need 20 committed families that have a young adult who needs the special care and guidance the Ranch for Autism will provide. We all know as parents we can not be there forever for our loved ones. I know I do not want my son to be institutionalized when I can't be there for him any longer. Of course our children can have visits ( home or on site) anytime. You may have the connections, knowledge to get this request completed. You may know someone with acreage ( we need approx. 50 acres ) that needs a tax write-off, or a family member willing to donate. Maybe help get a fundraiser, some attorney's, doctors, wealthy folks. Get the community involved! I have faith in you. Together we can pull all resources and do this. I currently have an investor to meet/match up to $800K, which is about 1/3 of what we need to reach our goals. Please contact me with any contacts / ideas that you may have. God Bless! Respectfully, Delia Power 702-942-0731 360 Yacht Ave Henderson NV 89012 [email protected] ↑ |
| Name: dalia_in_nevada | Date: Jun 24th, 2009 4:49 PM |
| I am writing you this letter in the hopes of some desperate assistance in Nevada and across the country. I have a young Autistic adult son, 19yrs old, ( Vincent Ortiz ). I understand the dilema you are going thru. You are not alone. I will be happy to talk to you any time, if anything just to listen and support each other. I will make this brief and to the point. I am a single mom working many hrs 7 days a week, savings is now gone in an attempt to pay on my own for caregivers. My son has severe "episodes" at which he can bite/scratch/pull hair or all of the above. These behaviors all began over the last couple of years and are progressively getting worse.He is 5 foot 10 185 pounds. I am 5 foot 2. I can not restrain him when he attacks. I desperately need HELP now. There are NO group homes or residential facilities who take children and/or young adults w/ Autism here in Nevada. The state treats Autism like it is a dirty word. I am in fear for the safety of myself and my daughter as we have been attacked a cpl times now without a caregiver here full time. I was thinking there are several folks in the same dilema as myself here in Nevada as well as across the country.. I would like to know if you could : 1.) assist with helping me open a RANCH FOR AUTISM here in Nevada. Pahrump still has land low priced and it's far enough out that folks who don't understand Autism will feel comfy, yet it is close enough for medical needs. I know exactly what these children need to make their life complete and busy with a scheduled routine and space to roam. I know that I could sucessfully provide the care and know how to make it a wonderful structured environment for the children. For instance: an equestrian area music program arts n crafts a green house pool / spa trampoline swings merry-go-round sand box walking paths 2.) help / steer / assist me w/ getting some families together that are looking for longterm placement for their young adults where they will be loved and cared for as if we were there ourselves. Home-like residential environment with plenty of activities to keep them busy and fulfilled. We need 20 committed families that have a young adult who needs the special care and guidance the Ranch for Autism will provide. This will be private pay and also state/federal funded, so it will apply to all. We all know as parents we can not be there forever for our loved ones. I know I do not want my son to be institutionalized when I can't be there for him any longer. Of course our children can have visits ( home or on site) anytime. You may have the connections, knowledge to get this request completed. You may know someone with acreage ( we need approx. 50 acres ) that needs a tax write-off, or a family member willing to donate. Maybe help get a fundraiser, some attorney's, doctors, wealthy folks. Get the community involved! I have faith in you. Together we can pull all resources and do this. I currently have an investor to meet/match up to $800K, which is about 1/3 of what we need to reach our goals. Please contact me with any contacts / ideas that you may have. God Bless! Respectfully, Dalia Power 702-942-0731 360 Yacht Ave Henderson NV 89012 [email protected] ↑ |
| Name: little things | Date: Jan 18th, 2010 4:23 AM |
| hi im little things cousethat what gets me though I have a autisic son he is 14, he is still learning he can talk and count to 10 but he he cant read or write. but it is the litte things that he is picking up slowly that is amazing every day some days are better than others most people looking at him would say he is spoiled but he amazes me every day ↑ |
| Name: jdpaige | Date: Jan 21st, 2010 2:21 AM |
| Hello Karen Schimp, my name is Jerry and i am a single parent with a 12 year old beautiful autistic girl, i reside in central Florida, and i look forward to talking to you guys, be safe. our email address is, [email protected], we really need to start a chat room for parents dealing with autism. ↑ |
| Name: kaylashooligans | Date: Jan 21st, 2010 4:41 PM |
| Hello, my name is Kayla Bell-Frederick. I am the founder of a group called the Hooligans. The Hooligans is a social skills group that specializes in children,teens and yound adults with developmental disorders- including Autism, Aspergers syndrome, ADD, and ADHD. We meet most and almost every day during the summer Saturdays and go to fun places, such as the skating rink, the mall, the movies, restaurants, and many more. We work on making friends inside of the group as well as the people we may meet while we are out. We also work on the social skills you need in everyday life, such as how to talk to a cashier, how to order food at a restaurant and basically how to act in public. If would would like to check out our website it is kaylashooligans.webs.com. If you would like to e-mail me you can do so at [email protected] ↑ |
| Name: juliefitz | Date: Jan 31st, 2010 5:54 PM |
| Hi Karen, My name is Julie and I too have a son with autism. Brian is 20 years (21 in June 2010). We thought that it would get easier when he got older but it has only gotten more difficult. We live the same life as you - some days great and some REALLY bad. There is never much rhyme or reason to his moods. Brian also has seizures and recently was diagnosed with Bi-Polar disorder. He is now considered dual-diagnosis and we are learning everything we can about this disorder. Sometimes he can go 38 hours without sleep! His doctor is currently trying to alleviate some of this with appropriate medication for bi-polar however the meds are conflicting with his seizure meds. We hope to have this issue resolved soon so we can all get onto a normal sleep schedule! It's a very long road to travel......Julie ↑ |
| Name: fivebucks | Date: Feb 4th, 2010 6:43 AM |
| Hi Karen my son is nowhere near your childs age but I always wonder what my sons future has in store, can you tell me when your son started recieving intervention and what he was like as a toddler and what he is like now I know even professionals DONT UNDERSTAND this disorder every case is different but I just feel like ive met plenty of autistic children and not one is remotely similiar to my son and I have hope but I always have wondered if my sone will ever be able to not need "INFANT CARE" I am so alone yet his # 1 advocate I will never give up on that window opening for him, I have no family to lean on Im also a mother of 5 I find myself getting angry at public people because they act as though my child is just out of control! I really need a friend that understands daily life One of my kids keeps asking if he will always be a baby? still in diapers non verbal ect... ect.. its heartbreaking I LOVE HIM SOOOO MUCH and you have been a mom to a special needs child way longer then I have and I just want some advice on how to be strong ↑ |
| Name: poy2009 | Date: May 15th, 2010 3:45 AM |
| Trenches? How about 35 years worth of sentry duty? When he was in school there was always a plethora of parents to share stories with.. Not so after he finished post secondary.. I was beginning to think the Rapture had occured and I was the only one left! Got Chat? ↑ |
| Name: poy2009 | Date: May 15th, 2010 4:25 AM |
| I don't think anyone can tell you what the future holds for your child. Each child is individual...but one thing is your childs favor.. youth! Autism has funding like never before... new treatments and new ideas hold a lot of promise for the autisic child in today's world. UC @ Davis is even touting a cure for certain types of autism now, so the future is bright for any child with autism in todays world. I would suggest to many of you parents out there to check your son or daughter with behavior problems for Candida Albicans in the digestive system. This disorder has long reaching effects on the individual with autism. You would not believe the change in abilities when a long term case of Candida gets cleared up. My son was extremely irritable, combattive and would go into violent rages... I thought it was just the autism and the onset of testosterone.. Little did I know he had a long term case of Candida.. No help from the doctors! Doctors know so little about our children. I found out my son had it by a simple spit test. Once I got him on a Candida diet and some good probiotics, I have seen a new person! It is hard to believe the power that Candida can have over anyone, let alone a person with autism and it is so prevalent in the autistic community.. Here and willing to answer your questions: [email protected] ↑ |
| Name: pugwash | Date: May 24th, 2010 11:06 PM |
| sorry im new to this game. i have a 16 year old son Callum,,, he's the speacial one in my life, who else would look after him???. Is this sight still up and running or has it folded. Why do you always feel asthough no one else knows the Challenging "fun" (as the experts call it) you have to go through just to survive?? ↑ |
| Name: bighushpuppy | Date: Jun 10th, 2010 4:00 AM |
| Hi, my wife and I are the parents of an 18 year old son with autism. My wife was wanting to find a chat group to talk with parents of autistic adults so here we are. I'm sure you have as many stories as we do (both good and bad). I'm sure she will enjoy talking with everybody!! Jon ↑ |
| Name: Robert Herbert | Date: Jul 17th, 2010 11:54 AM |
| I CURED MY SON OF AUTISM. HE WAS DIAGNOSED SEVERELY AUTISTIC AT AGE 2 1/2. I HAVE WRITTEN AN EBOOK EXPLAINING ALL OF THE NATURAL, ALTERNATIVE THERAPIES THAT CURED MY SON. PLEASE VISIT MY SITE www.howtocureautismnaturally.com ↑ |
| Name: debwms | Date: Jul 24th, 2010 7:29 PM |
| Hello, my son Anthony is 23yrs old and severely autistic the last 2 days have been awful hitting himself and crying almost constantly.any suggestions would be helpful ↑ |
| Name: Live 4 Love | Date: Sep 26th, 2011 11:27 PM |
| Hi Karen... I would love too. My son is 14 and has Autism, learning difficulties and Hyperacusis, he was diagnosed aged 17 months and we have been through alot together mum and son. would love to catch up with any other parents. Love + Blessings L x ↑ |
| Name: Kathie | Date: Oct 6th, 2011 12:11 AM |
| Hi Karen My name is Kathie, and I know exactly how you feel - my daughter has just turned 20. There have been triumphs and disappointments. The hardest part is not knowing other parents I can talk to. I'm pretty sure my husband also has autism, so it's especially lonesome. He doesn't have any patience for her and no real understanding of the problems of being a teenage girl with high functioning autism. Most parents have full-time jobs - I'm home - it just seemed to work out easier if I didn't go back to work after she was born. We also have an 18 yrs old son (who seems unaffected). Taking her to the various appointments with doctors, speech therapists, physiotherapists, etc, etc. fell to me. Being home full-time is very isolating. I hope I will be able to talk to other parents of teens with high-functioning autism. What strategies to these use to help their kids find friends...and am I imposing my idea that everyone needs a friend on her. She's attending a small, all-girls school - we felt it best since she was bullied in public school. Kathie from Canada ↑ |
| Name: Quiet girl | Date: Oct 19th, 2011 2:37 AM |
| Hello, My name is Laurie and I am the mother of a 19 year old son who has Aspergers, ADHD, OCD, Anxiety, LD, and Depression. My son is high functioning in some ways and other ways he is the opposite. I have a question that is embarrasing to ask but I'm at my wits end. Has anyone else had their child begin a new behavior in their teen years? My son has begun either urinating on towels, clothes, or paper towels when he is stressed out. He recently admitted he wished he could wear diapers sometimes and on the advice of his therapist we allowed him to buy a pack today. I cannot figure this behavior out - he did not show these symptoms until he was transitioning from 8th grade to high school and he has been out of high school since 2010. He has been able to go a long period of time without doing this (almost a year) but a recent break up with an online girlfriend (she had special needs as well) sent him back to it. He has told us he researched this behavior and some people do it to make themselves feel better - pretend they are infants with no stress or problems and that some people do it with a sexual reason. He states and we believe him on this part - that his is only for the 'non -stressed or no problem reasons. I am struggling with what to do - his dad and I have told him this is not normal behavior and tried to talk with him about it. Then I read a journal post he made on one of his online sites that stated "I wish my mom and dad would just accept that I want to wear a diaper and not think I'm a freak" so his dad and I have agreed to not tell him that again. On the same note - we don't want him to think that we are encouraging this behavior. I love my son with all my heart. My husband is step dad and if it ever came down to it - I would choose my son over him anyday (they both know this). But my husband also struggles with bi-polar and severe depression so this adds to my stress. I just want to help my son get better. If anyone has any idea of how to deal with this - or advice please share it with me. Thank you. ↑ |
| Name: liam ph | Date: Nov 5th, 2011 12:38 AM |
| Hello Karen, my name is robert. My wife and I are new to the chat scene and are interested in chatting with other parents who have had to make the decision to place their child into residential housing. We have a 14 year old son with Autism. Its been a long hard journey and we are devistated that it has come to this point in our lives. So we are looking for support from other parents to guide us through this tough decision. I f your son has been with you for the 20 years of his life I commend you for your strength. My e-mail is ( [email protected]) ↑ |
| Name: liam ph | Date: Nov 5th, 2011 12:52 AM |
| Can anyone please respond regarding the placement of their autistic child in a residential setting. we are looking for feed back from other parents who have had to go through this traumatic event in their lives. Robert and Kathy. ↑ |
| Name: Eener1967 | Date: Dec 17th, 2011 8:08 AM |
| Hi Karen: My name is Renee. My son was diagnosed with severe pdd nos at 2.5 and he is now 18. He is very verbal now and graduated high school. It has been alot of work!! Now we are working on trying to navigate the transitioning into adulthood. It so far has been a nightmare. We were denied services through the local dev dis office ran by the state of NY. Without it, we can not get independent living skills, job coaching, case managment, ect.... Right now we are in a holding pattern. Not sure what to do next. I had to withdraw caleb from college because he was failing. He will be repeating classes in the spring. ↑ |
| Name: Eener1967 | Date: Dec 17th, 2011 8:10 AM |
| I forgot to mention I live in Rochester NY and my email address is [email protected]. Renee ↑ |
| Name: kal | Date: Feb 28th, 2012 10:45 PM |
| OK .. i need help with this .. i have a 5 year old boy i believe he is autistic ..he has a vocabulary of over 500 words but only uses one word sentences .. when pushed he will use 2 or 3 poor eye contact knows all the shapes letters numbers in 2 languages does not point .. does not know how to kiss can count to 10 he has done all of that since he was 4 .. he now mimics elaborate motions he can read all the letters and numbers in 2 languages but the main thing is he is overly independent , will not speak unless is is detrimental and only in one word sentences if possible he has had extensive speech therapy for the past 8 months at that time he would not verbalize anything except songs and such .. was bathroom trained at age 3 and a half not a single mistake since has anyone been in a similar scenario with his or her child oh .. he goes to school with a shadow teacher and is following instructions much better his social skills are almost non exestent ↑ |
| Name: kdavis619 | Date: Apr 9th, 2012 2:05 PM |
| I need your help...I am in the process of doing some research for my graduate class.. I need at least ten parents of children with autism or maybe someone you know. OTs and PTs are also needed for this interview. I would love to hear from you too!! I have a simple questionnaire for you. Please send me email addresses and I will send you a questionnaire along with a consent form! ***Autism Awareness** Thank you!! ↑ |
| Name: Mr.Ed | Date: Apr 12th, 2012 1:55 PM |
| MY SON ERIC IS 21 YEARS OLD WITH PERVASIVE DEVELOPMENT DISORDER.I LOVE HIM IMMENCLY,IT HAS BEEN A STRU\GGLE EVERYDAY.MAKING SURE HE CLEANS HIMSELF,HE TRYS TO SHAVE I END UP DOING IT FOR HIM.I DON'T HAVE FRIENDS BECAUSE I DO NOT TRUST ANYONE.I KNOW THERE ARE A LOT OF CHILDREN WITH AUTISM,IT JUST DOESN'T SEEM FAIR WHY ME I'M A FAIRLY SMART PERSON.MY WIFE WORKS I DID BUT I BECAME A DIABETIC SO I DECIDED TO BE A CAREGIVER FOR MY SON.I JUST NEED SOMEONE TO TALK TO,THANK YOU! ↑ |
| Name: matthew42990 | Date: May 31st, 2012 4:16 AM |
| Hello Karen, I have a son with Autism who is 22 years old now and we too have been thru hell and back . I can't remember a time when someone wasn't staring at him or laughing at him. He is a wonderful boy full of love and happiness but has had his issues through out the last 22 years. I have felt totally alone in trying to address these issues as my husband defers everything to me. I live in a damned if I do and damned if I don't world. We have had a number of caregivers for him and many of them have stolen money from us. We treat all of our respite workers with respect and are now very jaded. I don't understand the people who treat parents of special needs children this way. Currently I am looking for someone I can trust to stay with our son from time to time and eventually trust enough to go on a vacation together. We never went anywhere until he was almost 10 and eventually found out that some of the caregivers stole money from us. I have so much anger in my heart for these people that we trusted our son with. My Matthew will always be with us as he cannot speak or understand commands. He is very bright, can work any computer tv dvd player iPod iPad etc....which I believe he gets from his dad. I homeschooled him for 10 years as I was tired of the school system teaching how to go potty and wash his hands. What's with that anyway? I taught him to read and he loves history and math. I am so proud of him for getting this far and overcoming the Autism issues, some of which continue to plague him. He is accepting more foods now and has developed a bond between himself and our two bichons. I cannot send him to a group home as I have seen the abuse that runs rampant in them. One of our respite workers who stole from us actually got her own group home shortly before we fired her. She claimed to love these people but I believe was only there to benefit herself financially. Anyway, thank you for this site, it's hard to find someone to talk to who understands and I hope that I can help someone who writes in about a problem! ↑ |
| Name: Katie C | Date: Jun 3rd, 2012 3:55 PM |
| Hi! I am a new teacher and I want to increase my understanding of family needs for children with disabilities. I want to know what families need that schools or teachers don't realize they need to provide, or suggestions for improving education. Thanks so much Katie Christopher ↑ |
| Name: catematthews | Date: Jun 14th, 2012 3:03 AM |
| Dear Karen and other members of this forum, Thank you so much for creating a forum for parents of autistic children! As the mother of a five-year-old autistic boy myself, I truly appreciate you opening up the dialogue here. My friends are doing a short survey to better understand the parents with kids with autism. I've been helping them with outreach and connecting to other parents and was wondering if you would be willing to participate. The link is here: bit.ly/M0ykAh Thank you very much! Best of luck and lots of love to you all. ~Cate ↑ |
