This person wants to express their concern on some issues. This item was emailed to this blog--AR
Here are some issues:
Diagnosis
I am not sure how many different things I have been told my son had - He is 10 and was formally diagnosed with autism at 9.
First PDD, ADHD (still has that), Landeau Kleffner Syndrome, Sensory Integration Disorder, Slow - whats up with that.
I wonder about the mercury levels too because he also has numerous fillings in addition to being vaccinated.
Money
Who is going to pay me to stay home with my son as I can only work part time. SSI is only $623 a month - what does this pay for today??????????? Wth two people you don't even get $200 for food a month, so who will by supplements and special foods like gluten free bread etc.. which is supposed to be good for him. Let's not forget that most of these children are very smart and also deserve to go to plays and movies, bowling - none of which can be done because of the lack of $$$. Lets not forget that it takes 2 hours to get to the doctr and 2 hours to get back on public trans or the meltdowns because of flying bugs outside and the lack of personal boundaries and the stares and underthe breath comments and judgement from others.
Sorry Jenny, but I'm over it with your book, $4000 a week for special services of course your child would be getting better, but what about the normal people.????????????????????????????????? I will say that your story is as heart wrenching as mine and Sally's and Mary's and all the other moms that have had their hearts smashed into bits as you watch your child in the line at school and no one says hi to him or talks to him. n preschool I had a child walk up to me and say " I am glad you are here to get, ****, I hate him. I don't have time to write a book because I have to work part time and be home every evening with my son to do his homework. How much of the money made from this book DIRECTLY helped other children with autism. I saw nothing about proceeds or a % being donated.
Parents should do all they can to help their child but do not do any new diets without first consulting a physcian or someone with a degree in nutrition - you can't just take dairy out ofthe diet with out having a specific plan with how your child will get things like Calcium and Vitamin D and other nutrients - there is also organic milk without hormones and such. You can't replace food with pills or vitamins and it is unwise to do it without some PROPER guidence. Iguess if you have $500 or whatever to pay for all the really espensive stuf and fancy doctors - well then do it I guess.
Education
Schools are still not up to speed, because of lack of funding and educated staff. Don't lower the bar! This is the first year my son is getting a "report card" - why is that? he does the work?
Alternative schools or programs such as self contained classrooms or computer area (lack of) that keep the bar low and comfortable for the teacher that usually has no other support. As a parent I would love to volunteer at the school but that would negatively impact my child and our almost nil income.
I am constantly talking with the school and thought they are really nice - they don't have the resources.
Showing posts with label cost. Show all posts
Showing posts with label cost. Show all posts
Saturday, November 10, 2007
Wednesday, October 17, 2007
autism moms in missouri
This mom wants to share her story. This item was emailed to this blog--AR
Hello,My name is Jackie Hanson and I have a son who was diagnosed with autism in Sept of 06. Im not sure what kind of information you are looking for. But I will start with what of course I believe played a very big role with my son having autism. Vaccines. My son was not born with autism. He was crawling at 4 months standinf up and walking around things at 6 babbling very early everything he did was early.
He used to make eye contact. He would laugh at funny things on tv. He was a little boy. Then one day he had shots and was a little boy with autism. Vaccines that i beleived was helping my son not harming him.
And no We have tons of meeting with school and people with the resources to help my child. We have an account that we are saving money in order to take him to a DAN dr. Instead of saving money for him to have for college. It bothers me very much. The Dr is at least $1000 to $2000 for the first visit. Well Im not sure what information you are wanting but that was a little preview of our story. I fyou would like to know more please feel free to email me at jackie_hanson@sbcglobal.net
Thanks
Jackie Hanson.
Please make this a good story and let people hear what us moms have to say. Because we after all know best right?!
Hello,My name is Jackie Hanson and I have a son who was diagnosed with autism in Sept of 06. Im not sure what kind of information you are looking for. But I will start with what of course I believe played a very big role with my son having autism. Vaccines. My son was not born with autism. He was crawling at 4 months standinf up and walking around things at 6 babbling very early everything he did was early.
He used to make eye contact. He would laugh at funny things on tv. He was a little boy. Then one day he had shots and was a little boy with autism. Vaccines that i beleived was helping my son not harming him.
And no We have tons of meeting with school and people with the resources to help my child. We have an account that we are saving money in order to take him to a DAN dr. Instead of saving money for him to have for college. It bothers me very much. The Dr is at least $1000 to $2000 for the first visit. Well Im not sure what information you are wanting but that was a little preview of our story. I fyou would like to know more please feel free to email me at jackie_hanson@sbcglobal.net
Thanks
Jackie Hanson.
Please make this a good story and let people hear what us moms have to say. Because we after all know best right?!
Tuesday, October 16, 2007
Three Sons with Autism
This mother wants to share her story. This item was emailed to this blog---AR
Hello, My name is Tonya Moyer, I have four sons, three of them being on the Autism scale to one extent or another,When I had my first son 13 yrs ago,after six months of preterm labor, being on meds to control the contractions, and finally 36 hours of labor, my first son was born,Travis. Autism and Aspergers are word's I dont think Id ever heard. Being a first time mom I was delighted in my son; his smiles and giggles and wonderful ability to learn,even though he was frequently sick with ear infections, he was so full of life and happiness in his first yr of life, he turned one, and things started changing , gone was my happy lill guy and in his palce came a very self centered ,fussy,angry little guy, at his one yr birthday party he was tired ,Ithought, and we brought him into a room full of toys and people who loved him ready to celebrate his big day, he cried the entire time, screamed and hit his head off the floor, i was so devastated, this was not the happy go lucky lil guy I had raised for the last yr. after that things got worse, he started not sleeping, bouncing off the walls most times, and hitting himself, alot of things "normal " children just dont do.All the while his pediatrician telling me give him time, he will come around,being a first time parent I had nothing to compare him to, and most of my freinds kids were all older,so there was no sence trying to compare his behavior to there kids , they were all yrs older than him.Eleven yrs. later Travis would be Diagnosed with Aspergers,after struggling for yrs.and many Dr.s telling me so many different things, i finally came across Aspergers syndrome, which described him perfectly.
Having split up with my oldest sons dad, i started dating and met and married a man. When we had been together for two yrs, we had a baby, it was a difficult pregnancy from the getgo, preterm labor, in and out of the hospital, on all kinds of meds to stop the labor, two months in a hospital and being on heavy doses of magnesium sulfate,they realeased me and i returned home to give birth a week later to my second son, Zachary, he was 6 weeks early but weighed almost eight lbs.!He was a very sickly baby, tongue tied and unable to nurse, I had to buy preemie nipples to feed him.When he was two weeks old he was hospitalized for RSV ,which started a very long yr, of in and out of the hospital ,ear infections,and hearing tests to check and see if he could hear. He didnt meet any of the normal developmental milestones, would just lay around and girgle to himself,i was concerned for my son, to no avail, his Dr. said he would be fine, at 12months of age he put him in the hospital to clip his tongue and put tubes in his ears, His Dr.said this would help him with the ear infections and talking..and walking..(due to the ear infections his Equilibrium had been off), after getting the tubes in his ears he finally started walking at 14 months,but still no talking, no interst in playing , or being held,any of the normal things a baby does.
His Dr. finally at my insistantce reffered him to a birth to three program which helps children with developmental problems by offereing therapies to overcome speach, physical,and Occupational development.They did an eval on him started therapy and were the first to mention Autism to me, after two yrs of therapy my son could finally say some words though not clearly, you could only understand him if you knew him, and I had tied toget a diagnosis but with no luck, all I got was alot of questioning and cried alot of tears , from feeling as if I would never get my son the help I knew he needed.I got pragnant again in 2002 gave birth to a third beutiful little boy, Tra, and watched him sooooo closely, for any signs of developmental problems.He developed so wonderfully, I was overjoyed , he was a happy smart funny lil guy, he would chase after his older brothers from six months on, happily knocking down anything they might be working on, just to get their attention, he is and will always be my little helper, he walked at 8 months, would get after his brother Zachary who was only interested in lining his cars up, and force him to play cars with him, this angered Zach so much, but eventually he came to accept Tra wasnt going to take no for an answer, and gave in after many fights... Tra always keeps after Zach, making him aware of his surroundings, they are the best of buddies, Zahc says Tra is his bestest freind to wich Tra just grins and looks sheepish. In 2004 I found out I was expecting again, much to my surprise, and went through another 8 months of preterm labor and gave birth to another little cutie, Woody. He was a fussy baby , hard to get to sleep and still is,he developed fairly typically until he recieved his 12 month shots, he walked at 8 mo. and talked at 6 months, but when he got his shots, the week after his birthday, he changed, he had a bad reaction to the shots, stopped talking within two days, and started hiding under the table, squatting in a corner, or siiting under my computer desk,doing nothing, he bacame fascinated with balls , any of them, he would gather them up and take them to his "hiding "spot and just sit there holding them , No smiles no giggles just sitting there. I called the same program who had worked with Zachary,Birth to three, and they came and did and evaluation,they had added a psychologist to there team of therapist by now and could give Woody what they couldnt give Zach yrs ago, a evaluation from a psychologist, who was Qualified to give a diagnosis. he had so many sensory issues it was crazy , he screamed bloody murder when put in the tub, he cried if you touched his collection of balls, he quit eating and had to go on supplements , ovaltine, and carnation instant breakfast are his normal diet .he had his eval uation from the Psychologist and was immediatly Diagnosed Autistic, although he was slipping away fast, we started intence therapy, and were able to pull him back to us, The intense therapy saved him, he smiles again, though still has alot of therapy ahead of him , he at least will interact now with us again, he as well as Zach and Travis have special needs, those needs are expensive, Ive had to quit my job to watch the kids; as no one wants to deal with Zachary, who is still moderatly Autistic,(Travis has Aspergers, Woody is mildly Autistic), he has frequent meltdowns and will throw things , chairs, bricks, anything he gets his hands on,and no one wants to deal with it, and to be honest I hate asking as well.Not knowing if someone will keep there cool with my son or mistreat him in a fit is too scary to deal with , Ive seen family I never thought would mistreat him, lose there cool after being bitten or smacked, and although I know personally how this feels, my son does not mean to do these things , I see the agony in his eyes ,the defeated look that comes across his face when he cannot get his meaning across to you, the sobs coming from his room when he goes there to calm down; are heartbreaking. Financially my family is a mess, there simply arent any programs out there to help families that need some supplemental income, I think there should be some specific work at home jobs offered to families with special needs , I cant work outside the home right now, I am willing to work, would love to work, but fear for my childrens safety. I tried some of those online jobs, they either want money or programs needed on the computer I dont have and cant afford to buy.I plan on going back to work next yr when Woody goes to special Ed preschool, but until then my kids arent getting the therapies they deserve, the tutoring that would help them,and the supplements that help there moods and digestive systems.Insurances dont want to pay for these things becouse they arent "approved" treatments, it is so sad that you can only help your child if you are rich, some of these diets , supplements , and therapies have been known to work, unfortunately, alot of kids will never get the chance to find out if they can be helped or not.If you know of any workat home jobs that are out there that i could do,without investing $ I would love to know , for myself as well as alot of my friends... I think it is a great thing you are doing , I just wanted to share my story with you;Although it is much more datailed I have hit the high points.And I wanted to tell you I am glad there are people like you fighting for the children On the Spectrum, It is a daily struggle, Hard on all family members, marriages, and freindships. Sometimes isolation feels like it is closing in on you.... that there is no end in sight, then somedays, my sons do something so small ,but yet so wonderful, it makes the sun breakthrough the clouds of Autism, and lights up my whole world with happiness over there accomplishments...Thank you for taking the time to read this...
Tonya M.
Hello, My name is Tonya Moyer, I have four sons, three of them being on the Autism scale to one extent or another,When I had my first son 13 yrs ago,after six months of preterm labor, being on meds to control the contractions, and finally 36 hours of labor, my first son was born,Travis. Autism and Aspergers are word's I dont think Id ever heard. Being a first time mom I was delighted in my son; his smiles and giggles and wonderful ability to learn,even though he was frequently sick with ear infections, he was so full of life and happiness in his first yr of life, he turned one, and things started changing , gone was my happy lill guy and in his palce came a very self centered ,fussy,angry little guy, at his one yr birthday party he was tired ,Ithought, and we brought him into a room full of toys and people who loved him ready to celebrate his big day, he cried the entire time, screamed and hit his head off the floor, i was so devastated, this was not the happy go lucky lil guy I had raised for the last yr. after that things got worse, he started not sleeping, bouncing off the walls most times, and hitting himself, alot of things "normal " children just dont do.All the while his pediatrician telling me give him time, he will come around,being a first time parent I had nothing to compare him to, and most of my freinds kids were all older,so there was no sence trying to compare his behavior to there kids , they were all yrs older than him.Eleven yrs. later Travis would be Diagnosed with Aspergers,after struggling for yrs.and many Dr.s telling me so many different things, i finally came across Aspergers syndrome, which described him perfectly.
Having split up with my oldest sons dad, i started dating and met and married a man. When we had been together for two yrs, we had a baby, it was a difficult pregnancy from the getgo, preterm labor, in and out of the hospital, on all kinds of meds to stop the labor, two months in a hospital and being on heavy doses of magnesium sulfate,they realeased me and i returned home to give birth a week later to my second son, Zachary, he was 6 weeks early but weighed almost eight lbs.!He was a very sickly baby, tongue tied and unable to nurse, I had to buy preemie nipples to feed him.When he was two weeks old he was hospitalized for RSV ,which started a very long yr, of in and out of the hospital ,ear infections,and hearing tests to check and see if he could hear. He didnt meet any of the normal developmental milestones, would just lay around and girgle to himself,i was concerned for my son, to no avail, his Dr. said he would be fine, at 12months of age he put him in the hospital to clip his tongue and put tubes in his ears, His Dr.said this would help him with the ear infections and talking..and walking..(due to the ear infections his Equilibrium had been off), after getting the tubes in his ears he finally started walking at 14 months,but still no talking, no interst in playing , or being held,any of the normal things a baby does.
His Dr. finally at my insistantce reffered him to a birth to three program which helps children with developmental problems by offereing therapies to overcome speach, physical,and Occupational development.They did an eval on him started therapy and were the first to mention Autism to me, after two yrs of therapy my son could finally say some words though not clearly, you could only understand him if you knew him, and I had tied toget a diagnosis but with no luck, all I got was alot of questioning and cried alot of tears , from feeling as if I would never get my son the help I knew he needed.I got pragnant again in 2002 gave birth to a third beutiful little boy, Tra, and watched him sooooo closely, for any signs of developmental problems.He developed so wonderfully, I was overjoyed , he was a happy smart funny lil guy, he would chase after his older brothers from six months on, happily knocking down anything they might be working on, just to get their attention, he is and will always be my little helper, he walked at 8 months, would get after his brother Zachary who was only interested in lining his cars up, and force him to play cars with him, this angered Zach so much, but eventually he came to accept Tra wasnt going to take no for an answer, and gave in after many fights... Tra always keeps after Zach, making him aware of his surroundings, they are the best of buddies, Zahc says Tra is his bestest freind to wich Tra just grins and looks sheepish. In 2004 I found out I was expecting again, much to my surprise, and went through another 8 months of preterm labor and gave birth to another little cutie, Woody. He was a fussy baby , hard to get to sleep and still is,he developed fairly typically until he recieved his 12 month shots, he walked at 8 mo. and talked at 6 months, but when he got his shots, the week after his birthday, he changed, he had a bad reaction to the shots, stopped talking within two days, and started hiding under the table, squatting in a corner, or siiting under my computer desk,doing nothing, he bacame fascinated with balls , any of them, he would gather them up and take them to his "hiding "spot and just sit there holding them , No smiles no giggles just sitting there. I called the same program who had worked with Zachary,Birth to three, and they came and did and evaluation,they had added a psychologist to there team of therapist by now and could give Woody what they couldnt give Zach yrs ago, a evaluation from a psychologist, who was Qualified to give a diagnosis. he had so many sensory issues it was crazy , he screamed bloody murder when put in the tub, he cried if you touched his collection of balls, he quit eating and had to go on supplements , ovaltine, and carnation instant breakfast are his normal diet .he had his eval uation from the Psychologist and was immediatly Diagnosed Autistic, although he was slipping away fast, we started intence therapy, and were able to pull him back to us, The intense therapy saved him, he smiles again, though still has alot of therapy ahead of him , he at least will interact now with us again, he as well as Zach and Travis have special needs, those needs are expensive, Ive had to quit my job to watch the kids; as no one wants to deal with Zachary, who is still moderatly Autistic,(Travis has Aspergers, Woody is mildly Autistic), he has frequent meltdowns and will throw things , chairs, bricks, anything he gets his hands on,and no one wants to deal with it, and to be honest I hate asking as well.Not knowing if someone will keep there cool with my son or mistreat him in a fit is too scary to deal with , Ive seen family I never thought would mistreat him, lose there cool after being bitten or smacked, and although I know personally how this feels, my son does not mean to do these things , I see the agony in his eyes ,the defeated look that comes across his face when he cannot get his meaning across to you, the sobs coming from his room when he goes there to calm down; are heartbreaking. Financially my family is a mess, there simply arent any programs out there to help families that need some supplemental income, I think there should be some specific work at home jobs offered to families with special needs , I cant work outside the home right now, I am willing to work, would love to work, but fear for my childrens safety. I tried some of those online jobs, they either want money or programs needed on the computer I dont have and cant afford to buy.I plan on going back to work next yr when Woody goes to special Ed preschool, but until then my kids arent getting the therapies they deserve, the tutoring that would help them,and the supplements that help there moods and digestive systems.Insurances dont want to pay for these things becouse they arent "approved" treatments, it is so sad that you can only help your child if you are rich, some of these diets , supplements , and therapies have been known to work, unfortunately, alot of kids will never get the chance to find out if they can be helped or not.If you know of any workat home jobs that are out there that i could do,without investing $ I would love to know , for myself as well as alot of my friends... I think it is a great thing you are doing , I just wanted to share my story with you;Although it is much more datailed I have hit the high points.And I wanted to tell you I am glad there are people like you fighting for the children On the Spectrum, It is a daily struggle, Hard on all family members, marriages, and freindships. Sometimes isolation feels like it is closing in on you.... that there is no end in sight, then somedays, my sons do something so small ,but yet so wonderful, it makes the sun breakthrough the clouds of Autism, and lights up my whole world with happiness over there accomplishments...Thank you for taking the time to read this...
Tonya M.
Monday, October 1, 2007
Story Idea-Cost and govt
This posting was submitted from a mother who wants coverage on costs and the gov helping. This item was emailed to this on this blog--AR
Autistic kids are like finger prints, you'll never find two that are the same. The biggest problem in my life has been funding. It will cost me $50000/yr to send my son to school. The gov't for some stupid reason will not give individual families money to help themselve. They will fund general programs that make families need to fit their kids into a box group...This is not posible. I think instead of funding programs that may only be of half use or no use at all to parents they should allow parents to draft their own proposals with their pediatrician for fund that can uniquely help each persons kid.
Nobody plans to have a disabled child! and Autism does not disciminate. Anyone can have an autistic child. Children with autism get worse and worse as polititians debate over the money issue! I was just in my cities news paper this last Wednesday about this same issue. Mother's break down because they just cant find the money to help their kids. This combined with fund being appriated to rediculous topics, like wars, space, gov't contests, drug and alcohol rehabilitation, sends moms like me through the roof. Im not saying that these things arn't important but lets face it 20 years ago amunitions expendatures were rated at $1.5 million dollars a minute globally!!!! (stat taken from: The Globe and Mail, Toronto Canada Jan.22.1987 in a speech given by Ivan L Head) but yet politions can't let parents have money to help their children! I am tired of watching my son get worse and worse because I cant afford to send him to school! $50 000.00 a yr!
Autistic kids are like finger prints, you'll never find two that are the same. The biggest problem in my life has been funding. It will cost me $50000/yr to send my son to school. The gov't for some stupid reason will not give individual families money to help themselve. They will fund general programs that make families need to fit their kids into a box group...This is not posible. I think instead of funding programs that may only be of half use or no use at all to parents they should allow parents to draft their own proposals with their pediatrician for fund that can uniquely help each persons kid.
Nobody plans to have a disabled child! and Autism does not disciminate. Anyone can have an autistic child. Children with autism get worse and worse as polititians debate over the money issue! I was just in my cities news paper this last Wednesday about this same issue. Mother's break down because they just cant find the money to help their kids. This combined with fund being appriated to rediculous topics, like wars, space, gov't contests, drug and alcohol rehabilitation, sends moms like me through the roof. Im not saying that these things arn't important but lets face it 20 years ago amunitions expendatures were rated at $1.5 million dollars a minute globally!!!! (stat taken from: The Globe and Mail, Toronto Canada Jan.22.1987 in a speech given by Ivan L Head) but yet politions can't let parents have money to help their children! I am tired of watching my son get worse and worse because I cant afford to send him to school! $50 000.00 a yr!
Story Ideas-Costs
This posting was submitted from a father who wants coverage on costs. This item was emailed to this on this blog--AR
Hi, I'm Bill, I saw your post on the Autism Speaks board (I am known as livsparents there). If you are going to do a series on autism, you simply MUST do at least one segment on costs of autism. It can be tackled from several different angles:
If you'd like to peruse my blog, I am at http://livsjourney.blogspot.com/ .
We have 5 children with our two youngest, 5 and 3, on the spectrum. My 5 year old, Olivia (Liv) is more severely affected, she is non-verbal and has various 'stims' (repetitive behaviors); the younger, Grace, is verbal and from outward appearances may be mistaken for a neurotypical child; but she will script and echo (scripts her favorite shows like Dora the Explorer and will echo things like saying "goodbye Gracie" rather than "goodbye daddy")
Thank for your attention to the autism issue,
William Kuhles
Hi, I'm Bill, I saw your post on the Autism Speaks board (I am known as livsparents there). If you are going to do a series on autism, you simply MUST do at least one segment on costs of autism. It can be tackled from several different angles:
- The cost to school systems and the local battles that ensue for parents to get the services that their children need vs budgetary constraints
- The cost of therapies for children for Applied Behavioral Analysis, Speech, Occupational, sometimes physical therapies
- The insurance battles to get these therapies covered.
- The run around that parents get between schools and/or insurance companies to have therapies covered. Therapies are often classified as educational and are denied by insurance on that basis (therapies should be done by the schools, they say). Non-restorative is the term often used by insurance saying that these children never had speech and that therefore speech is not covered because you are not trying to 'recover' speech already lost. ABA therapies are deemed 'experimental' by insurance even though it is probably one of the main strategies employed to help autistic children. Occupational therapies are not recognized as therapies for autism because of the aforementioned non restorative and because they can take many months to years to see benefits (occupational should be used to restore from 'injuries', insurance says)
- The financial devastation families go through getting their children the therapies they need and don't get within the school system or covered by insurance. I love to know the bankruptcy figures for families with autistic children
- The 'cost' of mainstreaming adult autistics; what is being done vs what COULD be done. Many of these adults may be 'underemployed' because of their 'social' disability; they may be competent and able, but may make potential employers uncomfortable.
If you'd like to peruse my blog, I am at http://livsjourney.blogspot.com/ .
We have 5 children with our two youngest, 5 and 3, on the spectrum. My 5 year old, Olivia (Liv) is more severely affected, she is non-verbal and has various 'stims' (repetitive behaviors); the younger, Grace, is verbal and from outward appearances may be mistaken for a neurotypical child; but she will script and echo (scripts her favorite shows like Dora the Explorer and will echo things like saying "goodbye Gracie" rather than "goodbye daddy")
Thank for your attention to the autism issue,
William Kuhles
Sunday, September 30, 2007
Chelation Therapy
Hi everyone. My name is Robert Kessler, I'm working as a research assistant on the series. I am researching specifically chelation therapy. If you have any experience with or knowledge about chelation therapy, I'd love to hear about it. I'm just looking for anything you've got: what age is best to start, different types, which method of administering is better, anything. I would also like to know about bio meds. I want to make sure that my knowledge of chelation therapy is as complete as it could possibly be. Thank you for taking your time to share your experience and/or knowledge with me.
Story Idea-Frustrations
This posting was submitted from a person who wants to express frustrations. This item was a comment on this blog---AR
Rainmom said...
for some ideas on stories, you might want to read the blogs below. Parents are angry. Darn right we are. No where in history has there ever been an epidemic that got ignored like autism. "Awareness" is a joke- being aware does not help fix our kids. Imagine being "aware" your child has leukemia, and the doctors are "aware" your child has leukemia, but instead of helping your get your child well, they recommended you go on a leukemia fundraiser walk to raise "awareness? This is exactly what's happening in autism.
Our government refuses to help our kids, our medical centers and medical society refuse to help our kids (unless you want psych meds- they hand those out like candy). This is an epidemic of never before seen proportion, and we've got treatments and therapies that can help these kids- but 90% of them are completely uncovered or paid for by any state services, schools, or insurance companies. Imagine having a child with leukemia, and having to pay CASH for all of the treatments? Welcome to autism- because that's what's happening.
Treatment after treatment is either called "experimental" (chelation, gf-cf diets, supplementing vitamins and minerals, food allergy treatments, etc) --or else called necessary (ABA) - but then refused insurance and medicaid coverage. Autism rates outrank childhood cancer, diabetes, cerebral palsy, and down syndrome combined....but no one has a telethon to raise money for our kids.
One giant organization is raising money left and right- to look for "those genes". Sick, sick, sick- there is no such thing as a genetic epidemic. We need paid treatments. Generation Rescue did what the CDC has REFUSED to do- conduct a survey comparing vaccinated vs unvaccinated kids- and the results are incredible- read for yourself (link below)
Here's some eye openers too:
http://pouringdownautism.blogspot.com
http://kimstagliano.blogspot.com/2007/03/guest-blogger-ive-been-asked-to-post.html
websites:
http://www.rescuepost.com/
www.generationrescue.org
www.autism.com
www.tacanow.org
Tami G
WA state
Rainmom said...
for some ideas on stories, you might want to read the blogs below. Parents are angry. Darn right we are. No where in history has there ever been an epidemic that got ignored like autism. "Awareness" is a joke- being aware does not help fix our kids. Imagine being "aware" your child has leukemia, and the doctors are "aware" your child has leukemia, but instead of helping your get your child well, they recommended you go on a leukemia fundraiser walk to raise "awareness? This is exactly what's happening in autism.
Our government refuses to help our kids, our medical centers and medical society refuse to help our kids (unless you want psych meds- they hand those out like candy). This is an epidemic of never before seen proportion, and we've got treatments and therapies that can help these kids- but 90% of them are completely uncovered or paid for by any state services, schools, or insurance companies. Imagine having a child with leukemia, and having to pay CASH for all of the treatments? Welcome to autism- because that's what's happening.
Treatment after treatment is either called "experimental" (chelation, gf-cf diets, supplementing vitamins and minerals, food allergy treatments, etc) --or else called necessary (ABA) - but then refused insurance and medicaid coverage. Autism rates outrank childhood cancer, diabetes, cerebral palsy, and down syndrome combined....but no one has a telethon to raise money for our kids.
One giant organization is raising money left and right- to look for "those genes". Sick, sick, sick- there is no such thing as a genetic epidemic. We need paid treatments. Generation Rescue did what the CDC has REFUSED to do- conduct a survey comparing vaccinated vs unvaccinated kids- and the results are incredible- read for yourself (link below)
Here's some eye openers too:
http://pouringdownautism.blogspot.com
http://kimstagliano.blogspot.com/2007/03/guest-blogger-ive-been-asked-to-post.html
websites:
http://www.rescuepost.com/
www.generationrescue.org
www.autism.com
www.tacanow.org
Tami G
WA state
Saturday, September 29, 2007
Story Idea-Cost and Schools
This posting was submitted from a mother who wanted express the issues of cost, schools, and the daily struggles. This item was emailed to this blog---AR
jennmom1 said...
Where to Start Addressing Important Autism Issues?1 ~ I think one of the biggest things the media misses is to focus on how can we help families with these kids survive financially. So many of their treatments are considered, "alternative," and the family has to struggle to pay for it. Usually one parent has to stay home to be there to help the child through school, in home therapy, ect. and the other parent is suppossed to make enough money on their own to pay for all of the so called, "alternative," treatments. Getting disability to supply money for your child is kind of a joke too. Unless you make almost nothing they will give you nothing. How are we suppossed to help our kids when we can't afford their treatments or we have to pick and choose which ones we do because we can't afford it? Does most of the world know what it feels like to have a child depending on you for treatment that may make or break their future and you can't give it to them?
As a parent that loves their child like nothing else in this wold it is absolutely devestating. You feel like you are letting your child down everyday. Not to mention that many insurance companies will not cover children with Autism. My husband lost his job and we lost our insurance. When we tried to find new insurance it was a nightmare. Every rep. I would talk to would be ready to sign me up until they heard that my son is autistic. As soon as they hear that they would tell me, "i'm sorry we can't cover you." That would be the end of the phone call. 2 ~ In addition, IEP's are a nightmare for parents because they are fighting to get what their child NEEDS and the schools fight them on it. While they are battling the school their child is going without services they desperately need and falling further behind.
There are some political issues such as funding and testing that supplies that funding that definetly play a role in the types of services the school will provide for our children, however, it's concerning that it all seems to come back to the money. If the bottom line is that schools are having trouble paying for these services then shouldn't we be addressing how to overcome that problem? With as many children that are now being diagnosed with Autism it should become increasingly obvious that we need to do something to provide these children with a fair chance at an appropriate education so that they may one day become productive members of our society.
As parents I cannot express how horrible it is to have to fight a school system to provide services for your child so that they may have a chance at a bright future. It makes our hearts ache to watch our children take a back seat to nuerotypical children. While it is equally important to provide an appropriate education for nuerotypical children our children should never have to be left behind.
3 ~ While I think it is admirable that many talk show hosts are trying to raise awareness about autism I think it is also important that they try to find guests for their shows that are relatable to the vast majority of parents dealing with this issue. When the guest speakers are celebrities, (no offense to any celebs with autistic children...ultimately we are in the same boat) with massive amounts of money to help their children, it allows the aspect of financial hardship to be overlooked. The majority of parents that have children with autism STRUGGLE to afford the treatments for thier children and recieve minimal, if any, help from their county or state. My own family for example, had to struggle for approx.
5 months strait working overtime to be able to afford the testing necessary to provide treatment to our son. After the testing was done it cost us approx.: $100. per month to retain a DAN doctor, $122, per month for B12 shots, $350. per month for bio-supplements, $300-500. per month for the GFCF diet (we have 2 kids on the diet) and thats with only one parent working because I had to stay home to be there when my son was getting his therapy which was 40 hours per week in my home. I would do it all over again to help my son, but, our family has definetly struggled and we continue to. The point that many families with children with Autism go through this gets lost when the main speakers are celebrities with a much higher income than the average family.There have been many other wonderful points brought up about the necessary awareness in different areas that need to have attention drawn to them. The bottom-line is there is still lots of work to be done. However, we as a community of Autism - parents are a strong community, a determined community, a dedicated and loving community that will not give up in raising this awareness. We will stick together for the betterment of the future of our children.
jennmom1 said...
Where to Start Addressing Important Autism Issues?1 ~ I think one of the biggest things the media misses is to focus on how can we help families with these kids survive financially. So many of their treatments are considered, "alternative," and the family has to struggle to pay for it. Usually one parent has to stay home to be there to help the child through school, in home therapy, ect. and the other parent is suppossed to make enough money on their own to pay for all of the so called, "alternative," treatments. Getting disability to supply money for your child is kind of a joke too. Unless you make almost nothing they will give you nothing. How are we suppossed to help our kids when we can't afford their treatments or we have to pick and choose which ones we do because we can't afford it? Does most of the world know what it feels like to have a child depending on you for treatment that may make or break their future and you can't give it to them?
As a parent that loves their child like nothing else in this wold it is absolutely devestating. You feel like you are letting your child down everyday. Not to mention that many insurance companies will not cover children with Autism. My husband lost his job and we lost our insurance. When we tried to find new insurance it was a nightmare. Every rep. I would talk to would be ready to sign me up until they heard that my son is autistic. As soon as they hear that they would tell me, "i'm sorry we can't cover you." That would be the end of the phone call. 2 ~ In addition, IEP's are a nightmare for parents because they are fighting to get what their child NEEDS and the schools fight them on it. While they are battling the school their child is going without services they desperately need and falling further behind.
There are some political issues such as funding and testing that supplies that funding that definetly play a role in the types of services the school will provide for our children, however, it's concerning that it all seems to come back to the money. If the bottom line is that schools are having trouble paying for these services then shouldn't we be addressing how to overcome that problem? With as many children that are now being diagnosed with Autism it should become increasingly obvious that we need to do something to provide these children with a fair chance at an appropriate education so that they may one day become productive members of our society.
As parents I cannot express how horrible it is to have to fight a school system to provide services for your child so that they may have a chance at a bright future. It makes our hearts ache to watch our children take a back seat to nuerotypical children. While it is equally important to provide an appropriate education for nuerotypical children our children should never have to be left behind.
3 ~ While I think it is admirable that many talk show hosts are trying to raise awareness about autism I think it is also important that they try to find guests for their shows that are relatable to the vast majority of parents dealing with this issue. When the guest speakers are celebrities, (no offense to any celebs with autistic children...ultimately we are in the same boat) with massive amounts of money to help their children, it allows the aspect of financial hardship to be overlooked. The majority of parents that have children with autism STRUGGLE to afford the treatments for thier children and recieve minimal, if any, help from their county or state. My own family for example, had to struggle for approx.
5 months strait working overtime to be able to afford the testing necessary to provide treatment to our son. After the testing was done it cost us approx.: $100. per month to retain a DAN doctor, $122, per month for B12 shots, $350. per month for bio-supplements, $300-500. per month for the GFCF diet (we have 2 kids on the diet) and thats with only one parent working because I had to stay home to be there when my son was getting his therapy which was 40 hours per week in my home. I would do it all over again to help my son, but, our family has definetly struggled and we continue to. The point that many families with children with Autism go through this gets lost when the main speakers are celebrities with a much higher income than the average family.There have been many other wonderful points brought up about the necessary awareness in different areas that need to have attention drawn to them. The bottom-line is there is still lots of work to be done. However, we as a community of Autism - parents are a strong community, a determined community, a dedicated and loving community that will not give up in raising this awareness. We will stick together for the betterment of the future of our children.
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