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Name: lorna1
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Hi Im mum of three. Our middle son has special needs it would be great to chat with other parents especially from the uk.
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Name: mondo | Date: Sep 21st, 2006 6:09 PM
Hello Lorna-
i'd love to chat on the topic, i am in the US however i have 3 kids, my 19yr old son has Autism. 

Name: lorna1 | Date: Sep 22nd, 2006 4:12 PM
Hi mondo
Our son Sammy is 7 yrs old. He has been diagnosed with autism, severe learn. diffs. and speech and lang. delay. Quite a mouth full I know. He was only formally diagnosed five months ago and even though I knew that things wearn't ok and I suspected the same as diagnosis ut I think I have been in shock ever since. Anyway I am sorry to be going on about me, as your son is 19 you must have some good advice, our son has particular issues (at the mo) with sleep and inappropiate toileting. I look forward to hearing back from you. Lorna 

Name: mondo | Date: Sep 22nd, 2006 8:12 PM
Hello Lorna, nice to hear back! It is amazing what the Internet can offer! I mean, 15 years ago this was unheard of as far as being in touch with groups/chat rooms like these with such ease! It is indeed nice to have the chance to talk about this issue as it affects our lives so deeply. We have ourselves a young man on our hands and I have to say that over the years there have been ups and downs but a steady improvement overall. what matters the most is behavior- if that cannot be controlled you might as well hibernate for the rest of your life because you will find yourself not being able to go anywhere unless you have a sitter or friends who can take your place while you are away for a break. Our son is a good kid though he does display the not so nice sides of Autism which are aggression and obsessive behavior, these two have in a sense escalated at this point in his life but I am happy to say that he is able to better control each episode and we too have strategies to redirect his moods to avoid a full-blown episode. Looking back, the difficulties were with the school (grammar)- Autism was not as prevalent as today and so programs to meet the needs of the Autistic were rudimentary at best if non-existant in some areas. His High School years were the best, the school he attended was so positive in theor mission to treat each kid as an individual with his own needs and therefore set up and Individualized educational plan, he even had 2 paying jobs (through the school and with a personal coach on site with him at all times). My son does not speak but he does use sign language which is and was a key change (for the better) in his life- he was able to initiate what was on his mind and communicate, ridding himself of pent up frustrations without doubt. I could go on, whose mom couldnt go on about their kids??? How are the school systems for Autism in the UK? Does your son have verbal language? I eagerly await to hear from you!
Susan 

Name: lorna1 | Date: Sep 23rd, 2006 10:42 AM
Hi Susan

Thanks for getting back to me. Sammy only has very limited speech and we use the PECS system in which everything is put into pictures and this is how we plan our days using these pictures to help Sam understand what is happening.
As for our education sysytem it is in chaos. Our government has a very strong inclusion policy (in mainstream schools) so consequently, all children with special needs are put through a mainstream system where there isnt enough money to cover the extra help that the children need and also teachers are not trained in teaching and coping with behaviours that our little angels come up with. In this country, we have what is called a statement of special educational needs , our local authority decides if our children need above and beond what a normal school can provide. If they decide they need more help then they draw up a legally binding document stating what the needs there are and how they are to be met. Now as im typing this, im thinking how simple it sounds but its not, the mounds paperwork, meetings, time delays and thats just the first stage there are two stages to go through to get this staement. At the the end of it you can still be turned down. When I started the process is told to expect to fail, because they are notoriously hard to get but thank god! with perseverence we got a statement, but at that point our authority wanted to keep Sam in mainstream school. I didnt agree with this wanting Sam to go to a very good special school which specialises in autisim. After three years of fighting he finally started this sep. and its going very well so far. I am sorry that I have gone on. I didnt realise I had written so much. At this very moment Sam has wrecked hid bedroom, stripped his bed and put his matress into triangle and is hiding under it. I dont know if I can ever get used to the things Sam does but it definatly makes him unique. I love that about him. He can be very agressive and he has started self harming to minor degrees but he can be the most lovely little boy that ever lived. Anyway I will go now and give you chance to reply. lol
Lorna 

Name: mondo | Date: Sep 23rd, 2006 6:08 PM
Hi!! Please don't apologize about going on (writing), i enjoy reading it all realizing how much we have in common with our kids.
You mentioned your son Sammy is using PECS- my son Jonathan used them on and off throughout his grammar school years but he didn't take to it as well as he did with the signing. Jonathan was mainstreamed for 2 years (Kindergarten and first grade) then it was evident that he needed more attnetion on a one to one basis; i was sorry to see him separated from the rest of the class and into a group of special needs only because i preferred him to have peer role models of "normal" behavior but as you know, the behavior can be very disruptive to the rest of the class, teachers do not have background to deal with them, etc. I did insist he join any class we thought suitable to him such as Art/Music or Cooking class because these classes tend to be free-flowing and caters to a noisier environment which would drownd any loud noises he might make. Overall however his schooling was on a 1:1 basis with an aide at all times, he flourished in HS- his school program was basically community based which took him into the community from 8am to 3pm: he took public transportation -bus- to his points of destination which were his HS as a point of departure into various activities- swimming at the YMCA, then off to his first job (he worked a job distributing and posting fliers on the university campus then he would go to lunch at pizz parlor or other restaurant choice then off to his second job which was clenaing up the grounds of an outdoor pub, setting up tables, etc. the days would vary with other activities. I cannot say that this great program is uniform across the US because it is not, a year ago we moved from the mid-west (WI) to the South (SC) and its pretty significant as how little they offer in terms of school programs, community-work opportunities down here... His days have changed drastically since he only attends the High School for 3 hrs/day and they are pretty laid back in the programs, no enthusiasm or passion for the progress of the special need person.. i mean they (Public schools across the US) have to offer school programs for the disabled until age 21, but the programs vary depending on State, some better than others. Well, in a way its worked out for us to have him home more becasue he has become quitehelpful around the house (chores)- he is a blessing in disguise is what i have learned throughout the years, opening my eyes to the world!
I hope you are having a good day, i wait for your reply!
Susan
PS- where in the UK are you? 

Name: Michelle Bowick | Date: Oct 12th, 2006 3:48 AM
Hi, Im a mother of a 4 yr boy with Autism, we are from Australia and would love to chat with anyone from any country. My son has started some new therepies ( to us anyway) and would like to discuss. 


Name: mspeachpit | Date: Oct 12th, 2006 4:41 PM
hi. i have a one-year-old daughter. every day, she will sit there and hit the side of her head with her hand, even while eating. could this be a sign of autism? any help would be great! 

Name: tvigus3 | Date: Oct 12th, 2006 6:27 PM
hi my name is trisha and i have a son who is autistic and we are havieng troubles with his behaviors. is there any information you can give me to help us out. 

Name: Michelle Bowick | Date: Oct 26th, 2006 12:23 PM
Hi, I was wondering what country you are from, Im from Australia and there is a women here that is very helpful with teaching different stategies for dealing with Autistic children. Her name is Sue Larkey. Let me know if you would like her website info ( i dont have it on me right know). 

Name: melissa1011 | Date: Dec 1st, 2006 7:45 PM
hello everyone I have a 11 year old son with autism and other diagnosis as well as a 13 yr old daughter with adhd and bipolar disorder would like to chat with others who know about lifes little miracles 

Name: melissa1011 | Date: Dec 1st, 2006 7:49 PM
hello mondo i live in texas and our schools lack in helping our kids they dont lack money just the knowledge of how to deal with our special little ones they have a one track mind they havent realized all children are unique in thier learning and i fight daily to make them accredible for what the law states our children are entitles to in the public school sysyte, 

Name: mondo | Date: Dec 1st, 2006 8:22 PM
hello Melissa,

I agree there, we have had to seek all the help we can throughout the years to ensure my son would receive better programs and I have to say that his HS years in Wi were very good, the staff was awesome in problem solving, brainstorming, etc to formulate his unique IEP/curriculum. It is a drastic change in the South but we are still working on improving things. 

Name: denecemarie | Date: Dec 31st, 2007 8:20 PM
I am a mother of 2 and my daughter will turn 2 in Feb.. I just found out that she has Autism.. I dont know how severe it is yet but, it is driving me crazy .. I am 22 years old and I also have a 4 year old.. does any one have any advice please help.

DENECE 

Name: Mark Sternberg | Date: Jan 1st, 2008 2:27 AM
Hello anybody here 

Name: Padmini B | Date: Jan 1st, 2008 3:37 PM
hi 

Name: Padmini B | Date: Jan 1st, 2008 3:44 PM
Hello! Just wanted to know if there are many options available in USA for helping autistic children. 

Name: jane222 | Date: Jan 14th, 2008 9:43 PM
hi i am a parent with a daughter of 11yrs old with autism, who has recently been diagnosed. I would like to chat to other parents as im finding this very hard 

Name: jane222 | Date: Jan 14th, 2008 10:08 PM
i know how you feel my daughter Abby was diagnosed with Adhd at 5yrs old. It has only just came to light now she has autism.Every day with Abby is a struggle she has all these rituals that has to be done before her day starts. She is terrified of crumbs it sends her crazy I was told my daughter was born with it but as she's grown older its become really severe.Abby has autism on the social and emotional side which means she can't interact with children and adults properly. she can't tell how your feeling and she certainly has no tact. Every day is a challenge and your not alone. 

Name: AutismWarrior08 | Date: Jan 15th, 2008 4:27 AM
I am the father of a 5 year old boy with autism. I share the feelings of the other parents on this board. My son was diagnosed over a year ago, and it was if we experienced a death in the family. We have spent the past year redefining what happiness is. We sold our house and moved to a different school district where we now receive excellent services, both in school and after school. Our son is making progress, but it takes time.

We may have a broken heart forever, but we must push forward and explore all the options available to us regardless. If you just listen to the doctors you are not exploring all your options. Question everything they tell you. You must learn to be a fighter even if you are not. We have had to fight to make every inch of progress with our son - some people thought we were crazy to sell our house, but it has made a difference and we didn't really care what they thought anyway.

The first therapists we had were not good, but it wasn't until we had a good therapist that we found that out. If your therapist comes late all the time, fire them and get a new one. We did (more than once), and they got the message. We now have a strong team in place who cares about our son and pushes him every day.

You are allowed to hurt, but don't stop fighting to get as much as you can for your children. They need the help now when they are so young. Good luck. 

Name: agentkandel | Date: Jan 15th, 2008 2:02 PM
This message is for Mondo:
I have ready many posts regarding late teen and adults with Autism. Can anyone with older Autistic teens and adults tell me how the medical profession "labeled" Autistic behavior 15-and more years ago. I can not find this answer on any web based search. I ask this because I am 55 years old, and do not remember ever hearing of the term Autism, in my earlier years,
yet I would go to nursing/care facilities to visit my elderly grandparent and see young people there, living in the same facility as my elderly grandparent. Any time I would ask the Facility Doctors and Nurse Staff about the reason of these young people being in the facility, I was basically told that these young people were in the facility because they could not "cope" and function in our society. The Staff also told me that I should avoid "contact with these in-house patients" because such were mentally retarded and potentially violent and abusive...and yes, the majority of these young people were controlled by the medical staff administering the necessary drugs to contol behavior. 

Name: kyleighsmom | Date: Jun 2nd, 2008 3:23 AM
hi. My name is Darcy and I have a 15 year old daughter with autism and would love to talk with someone and maybe get a little advice on somethings 

Name: mistymarie | Date: Jun 19th, 2008 4:38 PM
Hello everybody im new to this chat room my name is misty i have a three year old daughter who after months of going to doctor after doctor knowing that something was not right they finally diagnosed my daughter with the autism spectrum and speech delay. I would just like to get some advice i am a strong mom but somedays i just break and cry and wish i could do something to make her better right away mostly this happens when we are in public and sometimes she has a melt down and people always say something so rude i feel gulity for being weak is it normal to have these breaking moments as a parent and whats the best medicine for snapping out of it? right now my daughter is on a waiting list for all her thearpy 

Name: shelley779 | Date: Aug 13th, 2008 2:21 PM
hi everyone my name is shelley, and i am the proud mom of three beautiful children. My youngest tristan was put on the spectrum last month. My husband and i have known for a little over a year and started early intervention then. he has been in speech therapy for a year now and even though he is still non verbal he does communicate using the picture exchange communication and a lot of hand over hand leading. I thought finally getting a diaognosis would be in a sense a relief but i find i am struggling every day trying to make him better. i believe something triggered this to happen and there has to be something that will bring him back to us. Alot of the time i cry thinking why can't i make this better! as a mom isin't this my job to fix things when they go wrong. It is so hard I love him so much the way he is but i see his potential if we could only get him out of this fog he seems to be in. i know he is so smart and i wish he could tell us what he was thinking. Yesterday tristan had one of the worst tantrums ever my two other children and i have never seen one this bad before. by the end of it the three of us were in tears and my 6 yr old son was crying asking why his brother wasn't like everyone else. I never know what to say to that. my answer is usually something like "he is like us he just learns things differently" but i feel so many emotions sometimes i don't know if it is normal or if i have finally lost it. Some days i am a power mom who can do anything, and spend the day researching different therapys because maybe just maybe there is one that will work miracles. Other days i spend crying feeling grief for my perfect little boy that got lost inside himself. and then there are the guilty days where i just sit and think of different things i could have noticed to prevent this from happening.i also constantly feel guilty about the change in our household. In the past year my older two children have seen a big change at home tristan gets alot and i mean alot of our attention not that the other two don't but tristan can't be left alone for a moment. he is a climber a spinner a pincher and a biter. I love all my children so much and i feel somedays that my older son will resent tristan because he is the focus in our house right know. My older son has actually been saying "why do i get time outs when i am bad. Tristan pinches and bites you all the time and you don't give him trouble" My son just turned 6 so i hope with time he understands better.
Well that is how i am feeling today. if that makes any sense to you. my emotions are so jumbled latley sometime i probably don't make much sense. but if there is ANYONE WHO is feeling like this please feel free to message me @ shyone779@ hotmail.com
I now wake up every morning and try to tell myself "you are strong, you have to be, god would never give you more than you could handle" 

Name: Theresa C | Date: Oct 28th, 2008 8:48 PM
my son is 18 months old and he does not talk at all he says babababa when he wants to and thats as far as it goes he will raise his hands up to be picked up but does not point or gesture to other things he gets excited when he sees me and he lights up so he starts flapping his hands and he does this alot when he watched his favorite show and walks to the tv on his toes while he flapps .. his hearing is fine but he does not listen when we call his name or ask him to bring us anything but if hes in another room and hears his favorite show he comes running.. im just concerned because he shows signs of autism but then again he is very loving to me and his dad but thats as far as it goes .. just need some input thanks 

Name: nads | Date: Mar 10th, 2009 9:54 PM
hello lorna i have twin boys with autisim its not easy .some times one of the twins soil his pants ,smear poop on the toilet wall wets himself it can be stressful. we live in the uk. 

Name: StudentResearcher | Date: Apr 9th, 2009 2:25 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
sp
x?sm=0cbB4qgG0WIemjcRhUaUww_3d_3d

Thank
you
for you participation 

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