World Autism Awareness Day: Do You Like What You're Seeing?
Wednesday April 2, 2008
It's World Autism Awareness Day!
Autism Awareness Ribbon
I'd write at length about this massive worldwide event - but I'm sure you are getting more than your fill of information, stories, perspectives and suggestions about autism!
Autism Awareness Ribbon
So rather than blog on, I'm opening the floor to you. What are you seeing on TV, in the paper, in stores, in schools? Are you liking what you see? Share your thoughts!
Comments
MY son Logan will be 8 yrs old in May. He was born weighing 1 pd 10 oz with a level 4 brain Bleed. Todate he has been diagosed with PDD/Nos-Autism spectrum. Along with ADHD and several other diagonises. His local Special school district and school will NOT acknowledge his PDD-nos diagnosis and is trying to state he is emotionally distrubed. This will allow them to say he is not helpable with a lable like this. So, I am told that becasue he had brain injury he can’t have autism yet I have a Neurologist and Psychiatrist and phychologist that state he has Pdd/NOs or just Autism. I have been to a lot of therapiust and doctors and I have read so many books and I do believe my son has Autism. I can’t get him the help he needs. I am a single parent and have been forced to hire an attorney to fight for proper testing, diagnosis and services and placement for my son. Yet even with that very little progress is being made on behalf of my son. He has made no progress this year in school or the years prior and has been suspended 3 times this school year. I have been fighting the Special School District and school district to advocate for my son needs for 4 years now. I get called so frequently into IEPS meetings as well as I am called to come to the school to address my sons behaviors. Yet they demand he does not have Autism. He wets and solis his pants and the school refuses to assist him as he truely is needing. so he sits in soiled clothes or is sent home from school and misses school for a day all becasue they refuse to clean my son up. It has been impossible for me to hold down a job. My legal fees are incredible. FIghting thorugh the red tape and laws I am faced up against is so frustrating. I just want my son to have the best life possible. I have this window of time to adress his behaviors and get him the help he needs This is such a critical time period. As years go by I fear it will be to late to get him the help he needs so terribly. My son is not fitting into what our society calls him to fit into and I have a school that will not hear me or help my son by giving him a correct school diagnosis of Austism. It hurts my heart to see my son paying the price due to the laws and red tape and professional who have so proiven they incompedent. I know there are so many other children like my son and I just want to see them all live a full life that they so deserve.
I am so weary and frustrated.
Sincerely, angie
I don’t think there’s any way possible to keep up with an all day deal- good thing there’s articles to later read. I myself have decided not to watch this, it’s more for the ones who need education about autism, like the public. For the autism community, some of it will stir anger, disagreements and sorrow. I did see a segment yesterday on CNN, about the man with autism. What I found encouraging, is his intensive therapy started at age 8. He’s had this same job for years as an adult, too. I think for new parents to autism, there’s nothing that says a child can not progress if they get later interventions. One just never knows a child’s potential.
I agree with Sandy. I get a bit burned out sometimes, other times I just want to focus on our situation. Then suddenly I’m off again beating the drum to help others be aware and know there is help AND HOPE!
Whoa, I completely missed the fact that today is World Autism Awareness Day! Because I have been too busy being aware (and taking care of) my son with autism I guess!
A two week spring break and only sporadic home supports will do that to a person.
BTW I came here from your Top Ten Traits of People with Autism page and I have to say I really appreciated it. Although my son is on the lower-functioning end of the spectrum, so not apparently blessed with all the traits you mention, he has some of them..in spades! And yes, it is wonderful. Thanks for the reminder!
I don’t have basic cable. You tell me if I missed anything
angie I feel so sad reading what you wrote. I wish I could give you a hug. I am sorry to hear what you are going through. Can you find another job in another town? I’ve never heard of such a bad school. Can you contact the state and get services through the state and by pas the school? Some states have some converge for private therapy or make insurers pick up part.
Angie- what state are you in? I’m in Central New York and, while it depends on the district, generally special ed is excellent here. I’d definitely consider moving. Those teachers should be fired for letting your child sit in soiled clothes. Tell you what- if parents of other kids in that class knew about it I’m sure they wouldn’t be happy that their children were exposed to that. And go to your local news station- if they do a story on your situation your community may rally behind you, something might get done! That happens a lot around my area- it really works!
Have seen nothing on Aspergers Syndrome. Extremely dissapointing. I do have a display at the local library but could only obtain brochures to display.
I did my best to share that it was Autism awareness Day, I told everyone I could, to watch the 24 hours of CNN Autism Coverage. I have donation tubs at 15 locations for people to donate for the Walk-A-Thon next weekend.(which are doing well) I was extremely disappointed about local coverage, I contacted all of the local news stations about stories for that day asking to spread news about the walk and where they could donate, and I wanted to say thanks to the 15 buisinesses helping, I sent ALL the newsstations and newspapers story Ideas for that day, but there was nothing on the news I saw, but it is National Safety week saw lots on that. But CNN coverage on that day was good. I would like to see more about how enviroment plays a part and more about what other families are doing as treatments besides Therapy (we all are doing therapy), as this is whats covered by insurance. But what else are we doing with diet, and food interventions and mineral therapy, things they have been tried. Most families have to obtain these treatment on our own, If there was a consistant treatment plan with diet and minerals, would the people with Autism benifit, and how do we know if they are not, if the Medical profession isnt following the treatments, we the parents are doing it on our own. Could we get a little guidance on this. Since the whole month is Autism month, it would be nice to see stories all month.
Angie; Definitely need State,City,School distric and school?
Angie
I believe my son recieved several “labels” during his school years. He is now 22. He started out in Handicapped Preschool and age 3 due to hearing and speech disorders (he also had a cleft palate) At age 5 for kindergarten he was labeled “behavior disordered” and was in self contained classroom for much of the day during kindergarten and 1st grade. He slowly began to work out of “special ed” and spend more of the day in regular classrooms as he grew older. By Junior High he was only pulled out of regular class for testing and then, during his high school years, just for math education. I believe by the time he was 13, we began using Asperger’s as a school LABEL….but in the end, it really doesn’t matter as LONG AS YOUR CHILD RECIEVES THE SERVICES HE NEEDS. Sometimes with the education system, as well as many other things in life, you have to play a “word game” in order to get the services you need. I have a folder at least 3 inches thick of just IEP’s. When my son hit high school I had 3 meetings at the school in 2 weeks in order for him to recieve a Math Specialist.
There are state agencies involved with the schools that really do care that your child recieves what he is entitled to. Try the Agency for Disabilites in your state. I realize your fight, and know what you are going through. We were blessed to recieve everything possible for my son in the public school system, through a local university for ST OT and PT and through a number of private counselors, therapists etc. My son is now self sufficient drives a car works at our local Folk Center playing music and working with animals.
On the soiling, get the school nurse involved/ and surely your child would qualify for an aide.
PS I never had to hire an attorney for anything re my son’s education.
someone out there can help Anngie?please!
I fought so haerad years here
my son is dpoing finally great
and I a m not
I deal with health issues now …………..
I am in Canada so my experience doesnt apply
I am sure there is others close to you read,think and do I am doing my share by asking someone help Anngie ,please and her son I wish i had more to say or fo for you
Just good luck
maybe find and advocatefroma comunity lving ceneter I dont know what they are called there!
On CNN.com I watched a few video segments, but didn’t have time to watch any live. One that I saw bothered me. It was on the couple who are supposedly responsible for “World Autistm Day”. A couple who work at the UN and have an autistic son. They both look very well educated and financially well-off. The segment tells how she took leave from work to manage her son’s care, and shows her in a meeting asking therapists questions about her son’s progress, etc. Very professional/business like. And it tells how her son is progressing and that there is hope for autistic children and they want to spread the word. That was what I got out of the segment anyway.
Okay. Reality check. The first post in this discussion was from a mother experiencing the total opposite, and, forgive me, but Angie probably doesn’t have the financial means and education (especially after legal bills) this couple has.
I really, really, really worry about the message this couple is sending to people who have not experienced the frustrations that come from lack of resources (education/location/financial) with their own children. This isn’t educating them, this is snowing them. What they’re fortunate to have is not reality for most. I find this so frustrating that I have a hard time talking to my friends w/NT kids or older family members. This UN couple aren’t helping people “get it”!
I agree that financial ability does determine how much therapy, treatment, and consultations we can get for our children; and that does help our children progress. However, it also depends how severely the child is affect by the autism and everything that can go alon with it. I have two sons, both on both ends of the spectrum. There is a difference.
Honestly, one of the things that bothered me the most was Jenny McCarthy on Larry King saying “give my child measals over autism any day” I think that was a very foolish thing to say. I wasn’t impressed with her overall advocacy approach.
I was encouraged and enlightened by Amanda B. who inspite of her anxiety, sensory issues, and repetitive behaviors is able to communicate the way she does. Truly, inspiring.
God bless you all!
I can say that I telephoned the newspaper in my town in Sweden to inform them of this global day. They knew nothing of it. They contacted the Autism Society of Sweden who in turn knew nothing about it. The newspaper did put a blurb in the paper about how noone knew anything about it. arrrgh… It is about awareness. Yes everyone has a different story and all cannot be portrayed, but it is bringing awareness. I think most people can understand that just because someone is financially able to quit a job to care for a child that that is not always the case. I am grateful to the woman who did quit her job and take care of her son and used her contacts to push for the World Autism Day. Hopefully next year on this day many more people will be aware of it in some fashion who were not prior to April 2, 2008. I’d welcome the day that I do not have to explain the how’s or the why’s to lay people. I believe this dedicated day will help us in the long run.
I am a father of a 3 year old autistic daughter. I saw a few things on CNN corporate news. The first thing I noticed was how they slammed the idea of shots being the cause of autism. Let’s face it the government, for whom I worked for 26 years, will cover for the drug companies. If it got out that shots have indeed added to or caused autism in children there would be millions of lawsuits causing the drug companies to file bankruptcy and/or go out of business. Couple that problem with what is coming out about drugs coming from overseas and there is mass panic. I think we need to know if the shots are doing this to our children in any case. I have contacted Ralph Nader on this issue. Please don’t think I am making this political. Ralph has gone behind the scenes before to find out the truth not caring if he steps on government or corporate toes. I just hope he will do something here. If there are problems with the shots, let’s fix it. Our children have autism, let’s not have other parents join us, if it is preventable.
Ken,
You watched the wrong program. You should have watched Jenny McCarthy and David Kirby on Larry King Live. There was plenty of discussion about vaccines on that show. In case you missed it:
Watch the Larry King interview with Jenny McCarthy discussing her son’s treatment and recovery from autism with the DAN protocols and the relationship of vaccines to autism. Watch a panel of doctors debate these issues.
(http://edition.cnn.com/2008/US/04/02/mccarthy.autsimtreatment/index.html#cnnSTCVideo)
I thought the Jenny McCarthy segment was unwatchable. I’m generally moved by her passion for her son and what’s she’s doing to really help but the yelling, accusations and talking over of other guests was disappointing and not thought pervoking in the least. My son is on the spectrum and my daughter is a cancer survivor. I’m an advocate all the way for both of their causes but there has to be a better way to discuss such vital issues.
It is amazing, but my story is so similar to Angie’s above. My daughter also had a ruff beginning, having a massive brain injury when she was born. It effected her short-term memory, and caused many problems,we thought were from her brain injury. About six months ago, after seeing Jenny McCarthy’s show about the problems with vaccines, I started my own research, and I was on a mission. I began to look back to all those problems I had with her behavior and anger outbursts, and wondered if my daughter was going through the same things. Around eighteen months, she started hitting other children, and was pissed off, twenty-four-seven. I thought it was the terrible-two’s early, but I was soooo wrong.
I strongly agree with Jenny McCarthy and what she had to say. She may be over-bearing a little and “louder than words” can take..lol, but I love her. She sent me on my journey to find my daughter. I set up an appointment with a DAN doctor and saw one three weeks after the broadcast, beginning my journey. I found out she had an overload of metals in her body–Aluminum, Copper (at a toxic level) Mercury, Tin, and lead. WHY????????????????? I asked myself over and over. This had to be what caused her behaviors. I tell you what people, having to stay at home because your child is uncontrollable and angery and you, the world, and everything in it, will kill the mind and the human spirit. It did me!!!! All that time, and I was feeding her body things she was allergic too, and didn’t even know it. She couldn’t tell me. She craved the foods that hurt her…so she didn’t really know it either.
DIET is the most important thing out of all this Autism information, for me that is, that I’ve found works the most. Go on the gluten/casein-free diet, and do it for awhile. It may take a long time to see results, but I’m telling you, it makes a difference.
I’m sure a lot of you have heard about Jenny McCarthy’s son and how his autism was reversed…well, I truely believe that if you get to a child early enough, there can be significant changes. See the DAN doctor and detoxify them. There are natural detoxifiers out there, ask the doctor, do the diet, get your child on organic vitamins and organic food to keep out as many toxins from food as you possibly can, and make sure you have a water purifier or have them drink purified bottled water. All of these things WILL make a difference, at least a little. These kids have sooooo many metals in their bodies that the nutrients attatch to them, not regulating them to the rest of the body. That’s why their behaviors are all over the place. Their bodies and minds are starving for nutrients.
I used to think my daughter had so much brain damage, and I was dead wrong. We used to have to put symbols and little pictures all over the house, just so she would eventually remember where things were–her shirts, panties, socks etc., and who knew it would turn out like this. My daughter still has some issues, but she is excelling in school and going into first grade next year, her memory is enormously better, she’s no where near so upset like she used to be, and we’ve seen many smiles in the passing months. It is working. And it’s going to take some time before we’re done.
A lot of these autistic children that are on the spectrum, are eating and drinking dairy and other foods that are causing inflammation in the gut. This inflammation stays inflammed and causes rips in the lining of the intestines, which then causes protein molocules to seep out the walls and enter the blood stream. Finally, these protein molocules travel to the brain, causing the child to be on an opiat high all the time, also causing crazy behaviors and outbursts. Find out what their allergic to and change their diet.
We need to get the mercury out as well. Please go to my web page and watch my videos about autism, triple vaccines, mercury,toxins in the environment and what you can do about it. We, as parents of autistic children, are a fighting and courageous breed, never giving up for our babies, and never giving in to societies ignorance and wrath about something that most don’t care to understand. Well, the numbers keep going up, so someone’s going to have to listen!!!!! Spread the word….DEFEAT AUTISM NOW!!!!!
Sorry…I forgot to leave my website. www.myspace.com/kristenlmi
Keep up the HOPE out there!!!
Stephanie,
I totally agree about the Larry King show with Jenny McCarthy. I would have liked to hear more about what the doctors had to say. I’m sure her behavior was a great distraction to them too.
But I am not sold that immunizations are the cause of autism, maybe plays a role. I noticed when my son whom is severely affected was born that there was something going on with him. My first son was totally opposite and on the other end of the spectrum.
It was obvious at 12months that my son was autistic, before he had his MMR vaccination. I agree with the one doctor on that show that it develops over time, most often over the first 12months.
Best wishes for you and your children!
Stephanie,
Do you have any silver fillings in your mouth. I was just curious. These contain mercury, too, as well as flu shots and tetnus shots. I’ve done a lot of research about silver fillings especially, and there’s been a lot of proof that a woman that has more than four silver fillings in her mouth before or during pregnancy, will more than likely have a child with problems. They said this because the mercury in the fillings constantly release a gas in the mouth that goes in to the body, when you eat, breath, swallow etc. This gas will cause birth defects. This is another possibility, instead of the vaccines. I have four in my mouth, but the vaccines did it for my daughter. They caused a domino effect of immune system problems–ear infections, inflammation in the intestines, heavy metal overload, allergies….the list goes on.
There are thirty-six vaccines now, compared to ten from over twenty years ago. Did you know this? And why do they give new born babies a Hepatitis B shot at birth? What is the need? They are not sexually active. They aren’t going to eat sea food! So what is the need? This is a HUGE change..especially since babies can’t handle these shots. A new born baby has to be over 250 lbs to be able to handle just the Hep B shot. Since 1989, when they changed the load of vaccines over night, the autism rate has skyrocketed. They didn’t bother to experiment on mice about this change in the amount of vaccines and the side effects before they gave it to children. The human child is now the experiment, and a bad one. These people are criminal.
The amount of vaccines given at one time is a lot of the problem; They are sometimes giving ten at one time. How can babies and toddlers handle that much. Did you know what’s in vaccines?Aluminum, eather, formaldyhyde, latex rubber, and the list goes on with their ingredients. I was amazed to find this out.
Anyway, just thought I would offer some insight. Hope I didn’t go overboard with info. I am very passionate about this subject. Sorry if I said , too, much!! K
I watched a lot of CNN’s coverage. Some was good, some not so good. Larry King’s segment was outrageous. Nothing give Jenny McCarthy the right to be rude. I want to hear the debate, not listen to a celebrity who happens to have a son with autism, use vulgar language. And then on top of that, she has the nerve to tell parents of children with autism, many of us who do not have her resources, that we need to go the Washington, D.C., for a demonstration. Now just how am I going to cross the country? Do I bring my daughter with autism who can’t stand being in a car for extended periods on a plane??? Or do I leave her at home for mulitple days and nights, which I have never done. Doesn’t she understand what being a low-income parent of special needs children is about? Guess not.
My 10-year old daughter has autism. My 7-year old daughter has a completely different disability which has left her medically fragile, in a wheelchair and on par with a 1-year old. I live in a small rural community that helps us as best it can. I don’t have a lot of money. I can’t easily travel to urban areas with services. I can’t afford to move even if I wanted to, and I can’t abandon one child to do everything required for the other. I do everything I can, as do my local elementary school and my community.
I wish someone would put in some effort to helping small rural communities with all of their special needs children, not just those with autism. It’s good to raise awareness, but unless that awareness manifests in concrete assistance, many children like my daughter will not succeed in achieving some level of independence and self-sufficiency. And that is a tragedy for everyone.
CNN had given a very good coverage, the whole of 2nd April. The documentary titled “We HAve Autism” which was the voices of parents all over the world, was excellant. IT was retelecast almost twice a day fot that whole week.
The program appears as CNN Special. Pl watch it if you have missed it.
RAmamani RAvi
Chennai, India
Wow, My daughter sounds like the others on this site!! We did hep b in hospital 5th day.She has a twin brother who is ok just ADD. Dirty Merck new this shot was defective!!!!!!!!!! I think it was 8 times the adult dose of themarisol in the vaccine. This was in the news a few years ago!Been GFCF a few years.Now I think she may have a blood sugar problem? We do hardly any sugar. WHY?? I found a great doc in South Jersey who has an autistic son.Starting DAN now!! Wish us luck with prayers.Many huggs and prayers for you all!!