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 Schools. Show all posts
Showing posts with label Schools. Show all posts
Saturday, November 10, 2007
Monday, November 5, 2007
Story Idea-schools, family, safety, resources
This person wants more coverage on a wide range of issues. This item was emailed to this blog.--AR
Thank you SO much for covering this story in your area. I wish our local new station would cover something similar.
I am a mother of 4, two children are on the spectrum. Both of my children on the spectrum have been diagnosed with PDD-NOS. My 6 year old son is mild mannered, verbal and very intelligent. People often tell me that I spoil him too much and that "it's not that bad". They often don't understand that Autism is not rocking and hand flapping. There are other self stimulatory behaviors.
My daughter is 4 years old and she does not have speech that is well understood, but she trys her hardest to speak, she is a bit agressive, but can be sweet most of the time. I hate that people just think that I am a bad parent.
It would be beneficial to cover some of these issues:
1. Local and national resources - often when parents receive the diagnosis they are not directed to the next step.
2. Affect on sibilings and resources for them. - My five year old son has stepped into a "care taker" roll for the other children.
3. Safety issues for the individual with autism - My 6 year old son has very scripted "echolalic" speech it would be difficult if he were lost and a stranger asked his address or other vital information. He could answer, but not an appropriate response. Others are non verbal and would not be able to respond or know how to ask for assistance
4. Affects of disability on a marriage
5. Education system and Autism.
6. Rights of the individual with Autism and their parents.
Again - Thank you for doing this story! I wish you the best.
-Meredith, Columbus, OH
I am a mother of 4, two children are on the spectrum. Both of my children on the spectrum have been diagnosed with PDD-NOS. My 6 year old son is mild mannered, verbal and very intelligent. People often tell me that I spoil him too much and that "it's not that bad". They often don't understand that Autism is not rocking and hand flapping. There are other self stimulatory behaviors.
My daughter is 4 years old and she does not have speech that is well understood, but she trys her hardest to speak, she is a bit agressive, but can be sweet most of the time. I hate that people just think that I am a bad parent.
It would be beneficial to cover some of these issues:
1. Local and national resources - often when parents receive the diagnosis they are not directed to the next step.
2. Affect on sibilings and resources for them. - My five year old son has stepped into a "care taker" roll for the other children.
3. Safety issues for the individual with autism - My 6 year old son has very scripted "echolalic" speech it would be difficult if he were lost and a stranger asked his address or other vital information. He could answer, but not an appropriate response. Others are non verbal and would not be able to respond or know how to ask for assistance
4. Affects of disability on a marriage
5. Education system and Autism.
6. Rights of the individual with Autism and their parents.
Again - Thank you for doing this story! I wish you the best.
-Meredith, Columbus, OH
Saturday, November 3, 2007
Story Idea-Aspergers/awareness
This person wants more coverage of awareness of the spectrum. This item was emailed to this blog--AR
The main problem I have had to face with my 5 year old son who has Aspergers Syndrome is the fact that most people seem to think all kids on the spectrum are exactly the same.
I hear all the time that well he talks some, he does not sit and rock....etc.. People need to know that there are different levels to each spectrum disorder, no 2 kids will be the same!
I also have had a hard time getting him OT and PT services because he is not "severe enough". The fact that he cannot pedal a bike so he can ride his bike with the neighborhood kids does not seem to matter, a 20 to 24 month developemental delay is not enough for services.
He has been in speech therepy since 2 1/2 years old and he is almost 5 1/2 - he still is not understandable to a unfamiliar listener, only a careful familiar listener can make out what he is saying and that is only 75% of the time.
His school sees no issues - they dont want to have to put out the money for services for him - thats what it is all about!
The main problem I have had to face with my 5 year old son who has Aspergers Syndrome is the fact that most people seem to think all kids on the spectrum are exactly the same.
I hear all the time that well he talks some, he does not sit and rock....etc.. People need to know that there are different levels to each spectrum disorder, no 2 kids will be the same!
I also have had a hard time getting him OT and PT services because he is not "severe enough". The fact that he cannot pedal a bike so he can ride his bike with the neighborhood kids does not seem to matter, a 20 to 24 month developemental delay is not enough for services.
He has been in speech therepy since 2 1/2 years old and he is almost 5 1/2 - he still is not understandable to a unfamiliar listener, only a careful familiar listener can make out what he is saying and that is only 75% of the time.
His school sees no issues - they dont want to have to put out the money for services for him - thats what it is all about!
Thank for listening - MM, Kansas
Story Idea-Schools
This person wants more coverage on school issues. This item was emailed to this blog--AR
Hi!
I am the mother of an autistic 7yr. old, beautiful little girl. While we always see what goes on with kids and their families with autism, but the one thing that I have yet to see is coverage about the obstacles we parents face dealing with the school districts. This is a huge problem, and I for one am sick and tired of watching my daughter struggle, and when I seek more help from the district, they do nothing. Teachers as well as the chairpersons etc.., pretend that everything is fine, that your child does not need the extra help. I could go on and on, and in detail, but it would be too much to write out.....
Hi!
I am the mother of an autistic 7yr. old, beautiful little girl. While we always see what goes on with kids and their families with autism, but the one thing that I have yet to see is coverage about the obstacles we parents face dealing with the school districts. This is a huge problem, and I for one am sick and tired of watching my daughter struggle, and when I seek more help from the district, they do nothing. Teachers as well as the chairpersons etc.., pretend that everything is fine, that your child does not need the extra help. I could go on and on, and in detail, but it would be too much to write out.....
I think the public needs to know this about autism
This person has a list of what they think we should cover. This item was emailed to this blog--AR
I think the public needs to know this about autism
1. treatment is NOT covered by medical insurance,( ABA) the educational system is required to provide that service toyou , but sadly they prefer to do the least amount they can get away with and the innoccent children are the victoms here.
2. the people claiming to be quailified to provide aba, most are NOT
3. Do not trust your local school district, they do not even think you should have a say in your own childs welfarebecause they are paying and not you.
4. If you know someone with a child diagnosed with Autism, They need your help and support more than you can imagine. Just because the child is quiet, is very goodlooking, or seems fine, dont let that fool you into thinking its not that bad, babysit the child for a long period of time at least overnight and you will get a better understanding of the situation.
5. There is a special place in heaven for ALL MOMS of CHILDREN WITH AUTISM !
I think the public needs to know this about autism
1. treatment is NOT covered by medical insurance,( ABA) the educational system is required to provide that service toyou , but sadly they prefer to do the least amount they can get away with and the innoccent children are the victoms here.
2. the people claiming to be quailified to provide aba, most are NOT
3. Do not trust your local school district, they do not even think you should have a say in your own childs welfarebecause they are paying and not you.
4. If you know someone with a child diagnosed with Autism, They need your help and support more than you can imagine. Just because the child is quiet, is very goodlooking, or seems fine, dont let that fool you into thinking its not that bad, babysit the child for a long period of time at least overnight and you will get a better understanding of the situation.
5. There is a special place in heaven for ALL MOMS of CHILDREN WITH AUTISM !
Tuesday, October 23, 2007
Corbin's story
This mother wants to share her story. This item was emailed to this blog--AR
Hi.
My name is Rebecca. I am the mother of three beautiful sons Corbin, Brecken and Abraham. My six year old Corbin was diagnosed with PDD-NOS in December of 2006 at the age of 5 years 8 months old. This is his story.
On a late April afternoon in 2001 Corbin came into this world. Physically perfect in every way. However, there was something not quite right, something that the doctors nor us could see. Corbin was born with a form of Autism known as pervasive developmental disorder not otherwise specified.
The differences in his first 18-24 months of life were so subtle no one would have caught on really. He spoke, walked, fed himself and did all of the things any normal child does during that time. He learned how to count to ten, all of his colors, how to spell his name and many other things all far before he was three years old. There was always something not quite right though. Something just below the surface that we either couldn't see or couldn't accept.
As an infant Corbin was the most well behaved baby I had ever seen. He rarely cried and was very content entertaining himself. I never found it odd that to get him to sleep I had to lay him on my chest and pat his back and rear for hours sometimes. I just thought it was a weird baby thing, just like some children prefer to be rocked or walked while falling asleep. I also never made the connection that even as a tiny infant he would be fine for hours doing his own thing. We could take him out shopping all day and rarely ever hear a peep from him. He didn't cry when he was wet or dirty or much ever really. However, as soon as we got in the car to start home the screaming started. He would scream for hours after a trip to Walmart and I always blamed it on over stimulation. When we went out of town for trips he wouldn't sleep much at all, in fact he couldn't really sleep anywhere other than in his own home. Like our shopping trips as soon as we got in the car to come home the screaming would start and aside from when he was sleeping it would last for days. Getting him back into a normal routine would take weeks. I again blamed all this on over stimulation.
He also had horrible tantrums. Nothing like I had ever seen in any other child. He would throw himself on the ground and smash his head into the sidewalk at times. The really unusual part was the fact it wouldn't even phase him he would just continue to tantrum.
Sometime between 2-4 a number of other unusual behaviors popped up. He was obsessed with spinning objects. He would line his cars up and then tantrum if anyone moved them. He also began covering his ears and tantruming whenever a train went through town. He couldn't answer questions of any kind, and he couldn't differentiate between he and she. When he began preschool at 4 and 1/2 he had major problems, he cried frequently through out the day. Anytime they changed activities Corbin would cry and tantrum. He wouldn't sing with the other children in music class, but would only sit with his hands over his ears. He also didn't play with the other children but usually chose to play alone alongside the other kids but never with them.
After a particularly horrible session in music one day Corbin was sent to the principle's office for refusing to participate, and sitting with his hands over his ears. When he got to the principle's office he refused to speak with her at all. She contacted me at home and spoke to me and told me what was going on. I was infuriated that they had sent a 4 and 1/2 year old child to see the principle for something so trivial and I got online. I typed in over sensitive hearing and putting hands over ears and one of the very first things Google pulled up was a sight about Autism. That was the day I learned that my gut was right everyone else was wrong. My son was not just spoiled and naughty he was Autistic.
We went through hearing tests (normal), physicals (normal) no answers from anyone. Corbin was given a developmental screening by the county which he failed miserably and was put into pre school special education. However, my husband, and my family was not ready to hear the words Autism. They kept saying oh he is only immature next year he will be like a different kid. Against my own better judgment I listened to them. Really, what did I know he was my first born, all of these people had other children they knew what was normal and what wasn't.
Kindergarten started and Corbin was mainstreamed into a class with 24 other students. A few weeks into the year we decided to pull him out for about an hour a day. When things didn't improve his kindergarten instructor called in the special education director and finally someone listened to me. She saw all the things in Corbin that I had been screaming about for years. I was convinced Corbin had Asperger's Syndrome but she said what she saw was PDD-NOS. This was the only thing I needed to push my family over the edge. Finally someone who was well educated saw the same things I had been seeing. Back to the pediatrician's office we went. This time we were told Corbin probably had ADHD and I put my foot down. I refused to put Corbin on any medication without a referral to someone who worked with Autistic children. We waited for three months for that appointment.
On December 12, 2006 I walked into that doctor's office already knowing what they would tell me. The news didn't come as a shock but maybe more so a relief that finally a Doctor believed me. Corbin was diagnosed with PDD-NOS that day and finally we started getting him the help he so very desperately needs.
Now it is not quite a year later. He has grown and improved more in the last year than he probably had in the entire 2 years preceding. He has had his speech therapy cut in half because he has met so many goals. His tantruming and behavior has improved so tremendously that his behavior plan at school had to be greatly modified. We still have our blows though. We recently found out his IQ was significantly lower than we were hoping. He will also have to be tested for Asthma soon because contrary to popular belief Autism definitely contributes to physical ailments as well. It is NOT just a brain thing. When he gets ill he regresses and has episodes of echolalia, and looses bladder control. When it is bad enough he loses the ability to speak and uses only gestures to communicate with us. Our battle is far from over, but with the major improvements he has made in such little time I can easily see that Corbin has a very bright and beautiful future ahead of him.
Hi.
My name is Rebecca. I am the mother of three beautiful sons Corbin, Brecken and Abraham. My six year old Corbin was diagnosed with PDD-NOS in December of 2006 at the age of 5 years 8 months old. This is his story.
On a late April afternoon in 2001 Corbin came into this world. Physically perfect in every way. However, there was something not quite right, something that the doctors nor us could see. Corbin was born with a form of Autism known as pervasive developmental disorder not otherwise specified.
The differences in his first 18-24 months of life were so subtle no one would have caught on really. He spoke, walked, fed himself and did all of the things any normal child does during that time. He learned how to count to ten, all of his colors, how to spell his name and many other things all far before he was three years old. There was always something not quite right though. Something just below the surface that we either couldn't see or couldn't accept.
As an infant Corbin was the most well behaved baby I had ever seen. He rarely cried and was very content entertaining himself. I never found it odd that to get him to sleep I had to lay him on my chest and pat his back and rear for hours sometimes. I just thought it was a weird baby thing, just like some children prefer to be rocked or walked while falling asleep. I also never made the connection that even as a tiny infant he would be fine for hours doing his own thing. We could take him out shopping all day and rarely ever hear a peep from him. He didn't cry when he was wet or dirty or much ever really. However, as soon as we got in the car to start home the screaming started. He would scream for hours after a trip to Walmart and I always blamed it on over stimulation. When we went out of town for trips he wouldn't sleep much at all, in fact he couldn't really sleep anywhere other than in his own home. Like our shopping trips as soon as we got in the car to come home the screaming would start and aside from when he was sleeping it would last for days. Getting him back into a normal routine would take weeks. I again blamed all this on over stimulation.
He also had horrible tantrums. Nothing like I had ever seen in any other child. He would throw himself on the ground and smash his head into the sidewalk at times. The really unusual part was the fact it wouldn't even phase him he would just continue to tantrum.
Sometime between 2-4 a number of other unusual behaviors popped up. He was obsessed with spinning objects. He would line his cars up and then tantrum if anyone moved them. He also began covering his ears and tantruming whenever a train went through town. He couldn't answer questions of any kind, and he couldn't differentiate between he and she. When he began preschool at 4 and 1/2 he had major problems, he cried frequently through out the day. Anytime they changed activities Corbin would cry and tantrum. He wouldn't sing with the other children in music class, but would only sit with his hands over his ears. He also didn't play with the other children but usually chose to play alone alongside the other kids but never with them.
After a particularly horrible session in music one day Corbin was sent to the principle's office for refusing to participate, and sitting with his hands over his ears. When he got to the principle's office he refused to speak with her at all. She contacted me at home and spoke to me and told me what was going on. I was infuriated that they had sent a 4 and 1/2 year old child to see the principle for something so trivial and I got online. I typed in over sensitive hearing and putting hands over ears and one of the very first things Google pulled up was a sight about Autism. That was the day I learned that my gut was right everyone else was wrong. My son was not just spoiled and naughty he was Autistic.
We went through hearing tests (normal), physicals (normal) no answers from anyone. Corbin was given a developmental screening by the county which he failed miserably and was put into pre school special education. However, my husband, and my family was not ready to hear the words Autism. They kept saying oh he is only immature next year he will be like a different kid. Against my own better judgment I listened to them. Really, what did I know he was my first born, all of these people had other children they knew what was normal and what wasn't.
Kindergarten started and Corbin was mainstreamed into a class with 24 other students. A few weeks into the year we decided to pull him out for about an hour a day. When things didn't improve his kindergarten instructor called in the special education director and finally someone listened to me. She saw all the things in Corbin that I had been screaming about for years. I was convinced Corbin had Asperger's Syndrome but she said what she saw was PDD-NOS. This was the only thing I needed to push my family over the edge. Finally someone who was well educated saw the same things I had been seeing. Back to the pediatrician's office we went. This time we were told Corbin probably had ADHD and I put my foot down. I refused to put Corbin on any medication without a referral to someone who worked with Autistic children. We waited for three months for that appointment.
On December 12, 2006 I walked into that doctor's office already knowing what they would tell me. The news didn't come as a shock but maybe more so a relief that finally a Doctor believed me. Corbin was diagnosed with PDD-NOS that day and finally we started getting him the help he so very desperately needs.
Now it is not quite a year later. He has grown and improved more in the last year than he probably had in the entire 2 years preceding. He has had his speech therapy cut in half because he has met so many goals. His tantruming and behavior has improved so tremendously that his behavior plan at school had to be greatly modified. We still have our blows though. We recently found out his IQ was significantly lower than we were hoping. He will also have to be tested for Asthma soon because contrary to popular belief Autism definitely contributes to physical ailments as well. It is NOT just a brain thing. When he gets ill he regresses and has episodes of echolalia, and looses bladder control. When it is bad enough he loses the ability to speak and uses only gestures to communicate with us. Our battle is far from over, but with the major improvements he has made in such little time I can easily see that Corbin has a very bright and beautiful future ahead of him.
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
Story Idea- AS not tragedy
This posting was submitted from a mother who wants to share she feels autism doesn't always have to be cured. This item was emailed to this on this blog---AR
Here's my thoughts, which have crystallized over the last few weeks due to lots of media coverage on autism.
1. Autism is not a tragedy. It is a neurobiological brain disorder that affects a significant number of children.
2. It is a spectrum, meaning that there are children who are highly functioning, such as my son with Asperger's Syndrome, and children who are completely non-verbal. Most of the focus tends to be on the lower functioning individuals.
3. Many of us do not think our child needs to be "cured." My 15-year-old son goes ballistic when he sees the commercials that speak of a cure. As he says, "they just don't understand, that's the way I was born." I do agree that there are small subset of the population who are susceptible to changes that occur after immunizations, but I believe that autism is primarily a genetic disease. Those individuals whose autism occurs after an immunization probably had the symptoms to begin with, but perhaps they were subtle, and not recognized by the parents/professionals until the child is effected by the immunization.
4. My son and his best friend (a girl) who also has AS, both told me that they would never want to get "rid of their Asperger's Syndrome" if given a choice. They were both emphatic about this.
5. Life on the spectrum is difficult. The educational system in our country is ill-prepared to handle these children, and as a result, the stress and trauma placed upon the children and their families it tremendous. EVERY MOM I know of a child who is on the spectrum is on some type of anti-depressant medication.
6. I would not trade my son, or change him, EVER. He has taught me patience, understanding, and appreciation for the little things in life. God gave him to me for a reason, and I am a better person for having been his mother.
Good luck with your blog.
Mary S. Halbach
mhalbach@chmca.org
Here's my thoughts, which have crystallized over the last few weeks due to lots of media coverage on autism.
1. Autism is not a tragedy. It is a neurobiological brain disorder that affects a significant number of children.
2. It is a spectrum, meaning that there are children who are highly functioning, such as my son with Asperger's Syndrome, and children who are completely non-verbal. Most of the focus tends to be on the lower functioning individuals.
3. Many of us do not think our child needs to be "cured." My 15-year-old son goes ballistic when he sees the commercials that speak of a cure. As he says, "they just don't understand, that's the way I was born." I do agree that there are small subset of the population who are susceptible to changes that occur after immunizations, but I believe that autism is primarily a genetic disease. Those individuals whose autism occurs after an immunization probably had the symptoms to begin with, but perhaps they were subtle, and not recognized by the parents/professionals until the child is effected by the immunization.
4. My son and his best friend (a girl) who also has AS, both told me that they would never want to get "rid of their Asperger's Syndrome" if given a choice. They were both emphatic about this.
5. Life on the spectrum is difficult. The educational system in our country is ill-prepared to handle these children, and as a result, the stress and trauma placed upon the children and their families it tremendous. EVERY MOM I know of a child who is on the spectrum is on some type of anti-depressant medication.
6. I would not trade my son, or change him, EVER. He has taught me patience, understanding, and appreciation for the little things in life. God gave him to me for a reason, and I am a better person for having been his mother.
Good luck with your blog.
Mary S. Halbach
mhalbach@chmca.org
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.
Friday, September 28, 2007
Story Idea-Schools and girls with autism
This posting was submitted from Kristin L who wanted to share information about schools caring for children with autism and girls having the disorder. This item was commented to this blog---AR
Kristin L said...
I am a mom with the Autism/Asperger's/ PDD Awareness that you posted on. I think that you should also include awareness in the schools and how a lot of schools do not know what an appropriate program for an autistic child is. For some of our kids the best thing that they can do is be "mainstream" with "typical" children but schools have tended to play doctor and push aside diagnosis and deny services. There is money going into research but not a whole lot goes into therapy. This comes from Jenny McCarthy's book, "Luekemia affects 1 in 25,000 and has $310 mil in private funding. Pediatris AIDS affects 1 in 8,000 and has $394 mil in private funding. Autism affects 1 in 150 and has $15 mil in private funding."THis is why it so important for stories like yours to get more than awareness out. Autism is here and it is not going away. What does the number need to be for our children to start getting help and not judged. Please stress that like snowflakes, there are no two Autistic children alike. Our lives are difficult and hard and so rewarding cause some of us have gotten the early intervention and our kids are improving and learning how to do things that many of us take for granted.
Also cause this is mainly a "Boys" disorder with 1 in 96 being boys, don't forget the girls. When y ou see pieces, it is usualy about boys but our girls are out their too. BOth my son and daughter are on the spectrum, with two very different types, and I do not think that the girls get really any attention. You might want to include a piece on Autism and girls.
September 28, 2007 8:04 PM
Kristin L said...
I am a mom with the Autism/Asperger's/ PDD Awareness that you posted on. I think that you should also include awareness in the schools and how a lot of schools do not know what an appropriate program for an autistic child is. For some of our kids the best thing that they can do is be "mainstream" with "typical" children but schools have tended to play doctor and push aside diagnosis and deny services. There is money going into research but not a whole lot goes into therapy. This comes from Jenny McCarthy's book, "Luekemia affects 1 in 25,000 and has $310 mil in private funding. Pediatris AIDS affects 1 in 8,000 and has $394 mil in private funding. Autism affects 1 in 150 and has $15 mil in private funding."THis is why it so important for stories like yours to get more than awareness out. Autism is here and it is not going away. What does the number need to be for our children to start getting help and not judged. Please stress that like snowflakes, there are no two Autistic children alike. Our lives are difficult and hard and so rewarding cause some of us have gotten the early intervention and our kids are improving and learning how to do things that many of us take for granted.
Also cause this is mainly a "Boys" disorder with 1 in 96 being boys, don't forget the girls. When y ou see pieces, it is usualy about boys but our girls are out their too. BOth my son and daughter are on the spectrum, with two very different types, and I do not think that the girls get really any attention. You might want to include a piece on Autism and girls.
September 28, 2007 8:04 PM
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