Autism

[nettiesaur]

QUOTE (GhostGirl @ Nov 14 2009, 08:52 AM)

QUOTE (Mara @ Nov 14 2009, 08:45 AM) ^^^  I'm sorry.  Bear in mind, though, the caliber of people who take the time to post mean comments on YouTube.  There's no moderation other than what the poster feels like doing, so that site has FAR more trolls than just about anything around.  It's asshattery unrestrained. Yeah, I know...but I've run into this in person too. I feel so misunderstood. As a person who prides herself on being able to clearly communicate feelings, especially in writing, it makes me sick that so many interpret my words in the way they do. GG, they don't want to understand, if they did, they would have to admit there's a problem, a huge one. I have a friend whose young son has severe autism and seizures as well. He rules their lives, their work schedules, everything they do. Their lives are focused around his needs. Yes they love him, and want to do the best they can to take care of him, but autism sucks! They have an older son who has to take a back seat to his little brother, and is a wonderful kid. Just like Kerry.   A big hug to you. I do understand. Those who don't, don't live through what you do.

Edited November 14, 2009 by nettiesaur

[GhostGirl]

QUOTE (nettiesaur @ Nov 14 2009, 09:36 AM)

QUOTE (GhostGirl @ Nov 14 2009, 08:52 AM) QUOTE (Mara @ Nov 14 2009, 08:45 AM) ^^^  I'm sorry.  Bear in mind, though, the caliber of people who take the time to post mean comments on YouTube.  There's no moderation other than what the poster feels like doing, so that site has FAR more trolls than just about anything around.  It's asshattery unrestrained. Yeah, I know...but I've run into this in person too. I feel so misunderstood. As a person who prides herself on being able to clearly communicate feelings, especially in writing, it makes me sick that so many interpret my words in the way they do. GG, they don't want to understand, if they did, they would have to admit there's a problem, a huge one. I have a friend whose young son has severe autism and seizures as well. He rules their lives, their work schedules, everything they do. Their lives are focused around his needs. Yes they love him, and want to do the best they can to take care of him, but autism sucks! They have an older son who has to take a back seat to his little brother, and is a wonderful kid. Just like Kerry.   A big hug to you. I do understand. Those who don't, don't live through what you do. Thank you so much. What you said means more than you know.

[edie]

These people have no right to tell you how to feel. Autism has robbed Stephen - and the rest of your family - of a normal life: why would you not hate it?

 

Please don't allow these ridiculous judgmental people to upset you. I think perhaps they just may not be able to understand that it is possible to have strong and contradictory feelings at the same time.

 

To me, you explain yourself very clearly and in your position I am sure I would feel the same as you do. Although I doubt I would have your courage.

 

Take care of yourself GG.

 

 

 

[GhostGirl]

QUOTE (edie @ Nov 15 2009, 03:15 PM)

These people have no right to tell you how to feel. Autism has robbed Stephen - and the rest of your family - of a normal life: why would you not hate it? Please don't allow these ridiculous judgmental people to upset you. I think perhaps they just may not be able to understand that it is possible to have strong and contradictory feelings at the same time. To me, you explain yourself very clearly and in your position I am sure I would feel the same as you do. Although I doubt I would have your courage. Take care of yourself GG.

Thank you so much edie.

[Mara]

I truly don't understand the mindsets of those who condemn you and others who hate the limits autism has put on Stephen and your family.

 

I hate diabetes. It screwed up my sister's life, literally. Did that mean I hated my sister for having diabetes? Good lord, no, and anyone who maintains otherwise can go f*ck themselves with a long, sharp instrument.

 

Do those who look for cures for paralysis and muscular dystrophy hate the millions of people affected by spinal/neuromuscular disorders? No one ever throws a fit when fundraisers are mounted to fight MD or find ways to enable paralyzed people to walk again. So why is autism singled out for this twisted rationale?

 

And I venture to guess that, if there were a cure found tomorrow that would halt and reverse the effects of the autism spectrum (oh, wish it were so!), lines to receive that treatment would be miles long and miles wide, and several of those who are now crying about "accepting autism" would be elbowing their way to the front.

Edited November 16, 2009 by Mara

[Lerxster]

(CBS) As more and more children are diagnosed with autism, there's a growing need for alternative treatments.

 

And, a mother in Brea, Calif. says medical marijuana has resulted in vast improvements in her autistic son, reports "Early Show" National Correspondent Hattie Kauffman.

 

Mieko Perez tells Kauffman, "Everyone who came to my home was watching me watch Joey die. He was deteriorating hourly."

 

Joey is severely autistic, Kauffman explains, so uninterested in food he was wasting away. At ten years old, he weighed just 48 pounds. Even bulky Halloween costumes couldn't disguise his frightening look of starvation. He basically only ate, like, peanut butter and jelly sandwiches for four years, Mieko recalls.

 

But, claims Mieko claims, it all changed with marijuana brownies.

 

She says not only is Joey eating more, he's communicating. "We're seeing Joey come out!" Mieko exclaims. "He's never made noises. ... We didn't even know he could make noise until the first batch of brownies."

 

Medical marijuana is often prescribed for cancer and AIDS patients who need to gain weight, Kauffman notes, but a prescription for a child is unusual.

 

The American Academy of Pediatrics opposes legalization of marijuana, but supports more research.

 

And, Kauffman stresses, though there's absolutely no evidence marijuana helps with autism symptoms, Mieko insists it has improved her child's life.

 

http://www.cbsnews.com/stories/2009/11/23/...in5748637.shtml

 

Very interesting..

 

[iluvgeddy05]

QUOTE (Lerxster @ Nov 24 2009, 03:02 PM)

(CBS) As more and more children are diagnosed with autism, there's a growing need for alternative treatments. And, a mother in Brea, Calif. says medical marijuana has resulted in vast improvements in her autistic son, reports "Early Show" National Correspondent Hattie Kauffman. Mieko Perez tells Kauffman, "Everyone who came to my home was watching me watch Joey die. He was deteriorating hourly." Joey is severely autistic, Kauffman explains, so uninterested in food he was wasting away. At ten years old, he weighed just 48 pounds. Even bulky Halloween costumes couldn't disguise his frightening look of starvation. He basically only ate, like, peanut butter and jelly sandwiches for four years, Mieko recalls. But, claims Mieko claims, it all changed with marijuana brownies. She says not only is Joey eating more, he's communicating. "We're seeing Joey come out!" Mieko exclaims. "He's never made noises. ... We didn't even know he could make noise until the first batch of brownies." Medical marijuana is often prescribed for cancer and AIDS patients who need to gain weight, Kauffman notes, but a prescription for a child is unusual. The American Academy of Pediatrics opposes legalization of marijuana, but supports more research. And, Kauffman stresses, though there's absolutely no evidence marijuana helps with autism symptoms, Mieko insists it has improved her child's life. http://www.cbsnews.com/stories/2009/11/23/...in5748637.shtml Very interesting..

I heard the mother on the news....interesting to say the least.

 

Another CNN story about a recovered child: http://amfix.blogs.cnn.com/2009/12/08/auti...ey-of-recovery/

 

 

hmm.

[SiriusRushFan]

Don't be dissin' the medi mari peeps! You, or someone you know, just might need it one day.

 

Damn, it's been many years since I ate that type of brownies. lol Amazing that family had the insight to try that remedy though. I'm happy for them.

[Lerxster]

QUOTE (iluvgeddy05 @ Dec 8 2009, 04:08 PM)

I heard the mother on the news....interesting to say the least. Another CNN story about a recovered child:  http://amfix.blogs.cnn.com/2009/12/08/auti...ey-of-recovery/ hmm.

Yeah. I had saw the story on the tv originally. The mother talked about how pharmaceuticals were killing her boy, but when she tried the brownies there was this huge change for the better. I don't think that part of the story was translated well to the article. It's like, what do you do when you're in the situation where nothing else seems to be helping

 

Yes, that early intervention helps is for real. And in the case of your story, huge! Thanks for posting

[GhostGirl]

I got the following information in an autism digest I get daily. It has to do with providing more awareness (and hopefully, funding) for high-quality long-term care for ADULTS with autism. One day my son will need this kind of care, and there's never a day that I don't think about who I'll have to trust to care for him when I no can longer do it full-time. Please take the time to read below, and, if you can, help by clicking on the video as described below. Thank you.

 

We'd like to announce an exciting opportunity for you to take part in a project that embodies the spirit of the New Humanity. Launched officially as Autism Reoriented Community Housing (ARCHway), our foundation is ready to take on the challenge of providing loving, state of the art, person-centered housing and living solutions for people with Autism as they become adults.

 

The values expressed in ARCHway's new disability paradigm assert that people with Autism Spectrum Disorders (ASD) and other developmental disabilities are not broken, and therefore do not need to be "fixed." Rather, they are to be valued and appreciated for their personal qualities and contributions, and it is the built and social environment that must be fixed, adapted and structured properly so that our fellow citizens with ASD and other intellectual disabilities can take their rightful place among us as friends, neighbors and co-workers. [NOTE: I have some issues with this statement because I don't think it applies universally, but won't go into them here.]The ARCHway initiative answers the question asked by parents of children with Autism, "What will happen to my child when I'm no longer able to care for him/her myself?" And you can help, simply by clicking on a web site. We'll tell you how in a moment.

 

As some of you already know, The Foundation for Autism Support and Training (FAST) was created three years ago by Karen Kaye. ARCHway is under the umbrella of FAST and is a non-profit foundation.

 

Our PR Team just launched a national public service announcement featuring Annie Potts, (our official National Spokesperson) called "A Perfect Storm: A Severe Shortage of Community Housing Options for Adults with Autism" http://www.youtube.com/watch?v=Jtdo6Zh4ok4

 

Here's How You Can Help

 

Google lists over a million sites for autism. We need as much visibility as possible on Google so we can establish ARCHway as the go-to site for autism housing. And we also need many viewings or "hits" on the Annie Potts video on You Tube so our public service announcement will go "viral".

 

If you, your families, your friends, your friend's friends, your co-workers, in short: everyone you know will go to the two sites listed below, you can help us make a difference to hundreds of thousands of families across the country.

 

1. Please go to our video on You Tube and play it over and over as many times as you are willing, but please do not use the replay function, use the back arrow to leave the page and come back in to view it again. The link again is:

 

http://www.youtube.com/watch?v=Jtdo6Zh4ok4

 

2. Visit our website at www.myarchway.org as many times as you are able. This will drive our website up the Google list.

 

3. Once on our website, click JOIN ARCHway and join as "other".

 

4. If you have a website, please put our website link on your site and if possible, upload Annie's public service announcement video on your site or provide the You Tube link.

 

I would like to share some exciting news about the progress of our public service announcement as ARCHway attempts to reach viewers across America. In just the first two weeks, our Public Service Announcement has been played a total of 50 times in six different states. It was distributed to about 1400 stations nationally, and we hope over the next three to four months, that it will continue to be aired by many more stations nationwide.

 

Thank you in advance for any help in spreading the word about ARCHway and assisting us to get our video and website a much higher ranking by increased viewership. With your help, many thousands of people should have an easier time finding our website, joining ARCHway and joining our effort to bring New Humanity ideals into the world of autism care.

[Natch]

Will do GG

[Fridge]

QUOTE (GhostGirl @ Nov 14 2009, 02:32 PM)

Guess what? 26 negative votes. This response: "Which means you need help. Now. You have the wrong attitude." From the same person who replied to me.

Translation:

 

"I resent you because you have not been broken down and defeated by this dreadful scourge, but I have, and your defiance and spirit are a stark reminder that I have given up"

 

Never give in - Your "attitude" is the only chance (however slim that might be) of Sephen having any sort of escape from his "prison" in the future.

 

You will clutch at straws and chase elusive hopes when others won't. And yes, it may be futile. But there is a sliver of a chance that one day in the future it might not. it is your decision, and yours alone, whether that is a dream worth chasing, and no one should try to take that away from you.

 

Having Aspergers (as you know) has not made my life easy in the past, but I am very, very thankful that I do not have the debilitating Autism that Stephen has. There is no way that the superficial "glamour" and supposed "compensation" of high functioning types should be conflated with low functioning Autism. They are very different animals indeed, and I don't blame you in the slightest for wanting to find a way- any way- out of it for Stephen.

 

Do you what you believe is right for Stephen. At the end of the day, that is all that matters....

[GhostGirl]

QUOTE (Fridge @ Dec 10 2009, 09:03 AM)

QUOTE (GhostGirl @ Nov 14 2009, 02:32 PM) Guess what?  26 negative votes.  This response: "Which means you need help. Now. You have the wrong attitude."  From the same person who replied to me. Translation:   "I resent you because you have not been broken down and defeated by this dreadful scourge, but I have, and your defiance and spirit are a stark reminder that I have given up"   Never give in - Your "attitude" is the only chance (however slim that might be) of Sephen having any sort of escape from his "prison" in the future.   You will clutch at straws and chase elusive hopes when others won't. And yes, it may be futile. But there is a sliver of a chance that one day in the future it might not. it is your decision, and yours alone, whether that is a dream worth chasing, and no one should try to take that away from you.   Having Aspergers (as you know) has not made my life easy in the past, but I am very, very thankful that I do not have the debilitating Autism that Stephen has. There is no way that the superficial "glamour" and supposed "compensation" of high functioning types should be conflated with low functioning Autism. They are very different animals indeed, and I don't blame you in the slightest for wanting to find a way- any way- out of it for Stephen.   Do you what you believe is right for Stephen. At the end of the day, that is all that matters.... Thank you P...so much.

[Natch]

QUOTE (Fridge @ Dec 10 2009, 10:03 AM)

QUOTE (GhostGirl @ Nov 14 2009, 02:32 PM) Guess what?  26 negative votes.  This response: "Which means you need help. Now. You have the wrong attitude."  From the same person who replied to me. Translation:   "I resent you because you have not been broken down and defeated by this dreadful scourge, but I have, and your defiance and spirit are a stark reminder that I have given up"   Never give in - Your "attitude" is the only chance (however slim that might be) of Sephen having any sort of escape from his "prison" in the future.   You will clutch at straws and chase elusive hopes when others won't. And yes, it may be futile. But there is a sliver of a chance that one day in the future it might not. it is your decision, and yours alone, whether that is a dream worth chasing, and no one should try to take that away from you.   Having Aspergers (as you know) has not made my life easy in the past, but I am very, very thankful that I do not have the debilitating Autism that Stephen has. There is no way that the superficial "glamour" and supposed "compensation" of high functioning types should be conflated with low functioning Autism. They are very different animals indeed, and I don't blame you in the slightest for wanting to find a way- any way- out of it for Stephen.   Do you what you believe is right for Stephen. At the end of the day, that is all that matters....

[GhostGirl]

copied from a FB note I wrote:

 

QUOTE

I read a news story this morning, helpfully provided by the Google autism alert I signed up for, that has shaken me to my core. I feel like I swallowed a huge block of ice. Basically it was about a young man with autism who lived with his mother - his parents were divorced (shocker). His tantrums and aggression had grown in intensity over the years, along with his body. Unfortunately his mental abilities didn't improve over time. He was classified as severely autistic and mentally retarded. After years of struggling with schools and medications, his mother was determined to take care of him and often kept his violent outbursts a secret. I can't go over the whole story here because it's just too hard, but the bottom line is, one day the mom didn't show up to teach her classes at Kent State. Someone investigated and found her on her kitchen floor, beaten to a pulp. She died without ever regaining consciousness. Sky Walker killed his mom. He was taken into custody and even now lives some sort of half-life at a facility, not comprehending what he has done. A baby living in a man's body... What did she do wrong? Did she not ask for help? She wanted her son in her care, knowing that he would be vulnerable in an institution. She knew she was in danger; she left a note in her safe, written a year or so before she died..."If this letter has been opened and is being read, it is because I have been seriously injured or killed by my son, Sky Walker. I love Sky with my whole heart and soul and do not believe he has intentionally injured me...." Contemplating this kind of situation keeps me from being able to sleep at night. I'm scared - not for my safety, but for what Stephen may be facing...what our family might be facing. I still cry, stupidly and uselessly wishing Stephen would get better. I look at my life and think WHY ME? This doesn't feel like a gift or a blessing or a joyful thing. I adore my son, but what does the future hold for him? The fear grips me and doesn't want to let go. I will never stop trying to help him. Never. But I will always wish he didn't have this damned disorder.

 

The descriptions of the man in this story remind me of Stephen in some ways - not all, but some. I am terrified of how he will change when puberty hits. I'm scared of having to let go of him, of where he will go, of how I will sleep at night, knowing he is no longer under my roof and my protection. He can't speak...he can't tell me if someone hurts him. I feel there are no good choices, and that happiness is impossible.

 

Forgive the utter darkness of this post. I am really fighting the blackness and despair...sometimes writing stuff down helps.

[Test4VitalSigns]

QUOTE (GhostGirl @ Dec 14 2009, 10:05 AM)

copied from a FB note I wrote: QUOTE I read a news story this morning, helpfully provided by the Google autism alert I signed up for, that has shaken me to my core. I feel like I swallowed a huge block of ice. Basically it was about a young man with autism who lived with his mother - his parents were divorced (shocker). His tantrums and aggression had grown in intensity over the years, along with his body. Unfortunately his mental abilities didn't improve over time. He was classified as severely autistic and mentally retarded. After years of struggling with schools and medications, his mother was determined to take care of him and often kept his violent outbursts a secret. I can't go over the whole story here because it's just too hard, but the bottom line is, one day the mom didn't show up to teach her classes at Kent State. Someone investigated and found her on her kitchen floor, beaten to a pulp. She died without ever regaining consciousness. Sky Walker killed his mom. He was taken into custody and even now lives some sort of half-life at a facility, not comprehending what he has done. A baby living in a man's body... What did she do wrong? Did she not ask for help? She wanted her son in her care, knowing that he would be vulnerable in an institution. She knew she was in danger; she left a note in her safe, written a year or so before she died..."If this letter has been opened and is being read, it is because I have been seriously injured or killed by my son, Sky Walker. I love Sky with my whole heart and soul and do not believe he has intentionally injured me...." Contemplating this kind of situation keeps me from being able to sleep at night. I'm scared - not for my safety, but for what Stephen may be facing...what our family might be facing. I still cry, stupidly and uselessly wishing Stephen would get better. I look at my life and think WHY ME? This doesn't feel like a gift or a blessing or a joyful thing. I adore my son, but what does the future hold for him? The fear grips me and doesn't want to let go. I will never stop trying to help him. Never. But I will always wish he didn't have this damned disorder.   The descriptions of the man in this story remind me of Stephen in some ways - not all, but some. I am terrified of how he will change when puberty hits. I'm scared of having to let go of him, of where he will go, of how I will sleep at night, knowing he is no longer under my roof and my protection. He can't speak...he can't tell me if someone hurts him. I feel there are no good choices, and that happiness is impossible.   Forgive the utter darkness of this post. I am really fighting the blackness and despair...sometimes writing stuff down helps.

[Mara]

That is chilling to read. I pray for significant advances before you and Stephen ever reach that point.

[Rolinda Bonz]

QUOTE (Lerxster @ May 19 2009, 03:50 PM)

By Cynthia Henry Inquirer Staff Writer TRENTON - After testimony from parents who had depleted their savings to provide treatment for their autistic children, New Jersey Senate and Assembly committees yesterday advanced a bill that would require insurers to cover screening and therapies related to the disorder. "If my child had cancer, diabetes or fetal alcohol syndrome, she would be covered," testified a tearful Hilary Downing of Readington, Hunterdon County. "The college savings of my older daughter is gone." Autism is a developmental disorder characterized by repetitive movement and severe deficits in communication and social interaction. Researchers have found New Jersey to have a high prevalence of autism, for which there is no known cure. "I don't know of any parent who wouldn't do everything in their power to give their autistic or developmentally disabled child every chance to excel," said Sen. Loretta Weinberg (D., Bergen), a bill sponsor. "However, the enormous cost of behavior intervention . . . makes it out of the realm of possibility for many families." The Assembly may vote as early as Thursday. The Senate bill has moved to the Appropriations Committee. Ten states, including Pennsylvania, have enacted legislation requiring coverage of autism treatment. Most of the laws cap benefits and the age of those covered. Similar to Pennsylvania's law, which goes into effect July 1, New Jersey's bill would provide developmentally disabled patients under 21 with insurance benefits of up to $36,000 a year for diagnostic services and behavioral early intervention, as well as occupational, physical, and speech therapy. "In this economy, every New Jersey resident is struggling, but families with kids with special needs are struggling even more," said Assembly Speaker Joseph Roberts Jr. (D., Camden), who also sponsored the bill. "They're maxing out their credit cards and taking out second mortgages" to cover gaps in insurance. Holly Masclans broke into tears as she testified that she had mortgaged her Haddonfield home three times and drained her older daughter's college fund to obtain $750,000 in behavioral and other therapies for two children with autism. "The only thing left that hasn't been treated is their stuttering, but we're broke," she said. Roberts called expanding insurance coverage the "most significant piece of unfinished business" after passage of seven autism bills since 2007. New Jersey has improved early detection, increased research funding, studied needs of adults with autism, and created training programs for teachers and first responders. The Legislature acted after the Centers for Disease Control and Prevention reported in 2007 that New Jersey had the highest autism rate among 14 states it was studying. Researchers found autism symptoms in one in 94 New Jersey children, compared with 1 in 150 in the other states, including Pennsylvania. Roberts and other witnesses yesterday attributed the state's rate, in part, to better diagnosis. U.S. Sens. Robert Menendez (D., N.J.) and Bob Casey (D., Pa.) and Rep. Chris Smith (R., N.J.) are sponsoring federal legislation to expand autism insurance coverage. No member of either New Jersey state committee objected to the measure. Two Assembly members abstained. The New Jersey Business and Industry Association and New Jersey Association of Health Plans opposed the bill because of cost concerns. As employers' insurance plans become more expensive, workers lose coverage, Christine Stearns, the business association's vice president for health and legal affairs, said in an interview. "How, who, and what is part of a basic health plan is all part of that," she said. Stearns said that the bill was an improvement to previous versions because it required services to be medically necessary and prescribed; included a reasonable price cap; and ensured that the cost of educational services provided by schools would not be not shifted to insurers. Roberts said improved coverage would enable earlier treatment and prevent costlier problems later. He referenced a University of California, Los Angeles, study that showed that 47 percent of autistic children who received early behavioral treatment went on to be "indistinguishable from their peers" and started elementary school in mainstream classes. The annual cost difference between special education and regular-classroom instruction in New Jersey is nearly $37,000, he said. In the long term, he said, the state also would save on adult and institutional care. The lifetime cost of caring for a person with autism is about $3.2 million, Harvard psychologist Michael Ganz estimated in 2006. In his study, the first to document the societal price of autism, Ganz suspected that parents' out-of-pocket expenses were underestimated. Lisa Bilsky of Princeton said she spends hours on the telephone arguing about coverage for her 10-year-old son. Last week, she said, a claim was denied for a developmental pediatric visit. Even for benefits her insurance provides - such as occupational therapy - her son must frequently be recertified as needing treatment. Autism is "not like you sprained your ankle. It's not going away," she said. http://www.philly.com/philly/news/new_jers...t_coverage.html

Thanks for posting this, Lerxster.

My older son, Tyler, cited it for a persuasive paper he's writing on autism and the lack of treatment available.

I thought that was a pretty kewl topic for a big brother to choose.

 

Update on Timothy:

His teachers have surrendered. They think he has an additional diagnosis, maybe "bi-polar" or "psychosis" and want me to seek one out. i don't know what those terms mean exactly or what to do about it. i have to fill out an intake packet about 50 pages thick to get him in to see a developmental pediatrician.

i am discouraged.

 

Something maybe kind of cool is in the works though.

Through a strange series of coincidences, I remembered that my father has PKU. (He was not diagnosed until Nutri-sweet came out,,,the shit almost killed him.) PKU is an inability to properly process the amino acid phenylalanine and can result in mental retardation, seizures and death, as the internet will tell us. However, my dad is so-very-not retarded and has never had a seizure. PKU is entirely genetic. They screen babies as soon as they are born by drawing blood from their heel.

 

I think Tim failed his first PKU test, but passed the second one.

 

The internet said they could do a urine test on older kids, so I made an appt for Tim. I was surprised when we got to the lab and they wanted to draw blood. I wasn't sure if Tim would cooperate, but after he listened to me and the lab tech squabbling for a minute, he went over and sat in the lab chair without prompting. He held his arm out and said something almost like a full sentence that included "unmove" and "brave".

 

Apparently, it takes 5-6 weeks to get results.

My sister says that if he's even "heterozygous", he could suffer some of the symptoms.

 

I think that as soon as we get in to see the Develop. Ped., we will also request the urine test so that we can understand what levels of phenylalanine we are dealing with, regardless of the genetic finding.

 

 

 

[GhostGirl]

So glad Tim cooperated and I hope you get some answers. We've been trying for about 2 years to get blood from Stephen. No luck. Nobody will agree to sedate him completely to get his teeth cleaned/checked and blood drawn.

 

Keep me posted on what you find out.

[Lerxster]

QUOTE (Rolinda Bonz @ Feb 4 2010, 12:35 AM)

QUOTE (Lerxster @ May 19 2009, 03:50 PM) By Cynthia Henry Inquirer Staff Writer TRENTON - After testimony from parents who had depleted their savings to provide treatment for their autistic children, New Jersey Senate and Assembly committees yesterday advanced a bill that would require insurers to cover screening and therapies related to the disorder. "If my child had cancer, diabetes or fetal alcohol syndrome, she would be covered," testified a tearful Hilary Downing of Readington, Hunterdon County. "The college savings of my older daughter is gone." Autism is a developmental disorder characterized by repetitive movement and severe deficits in communication and social interaction. Researchers have found New Jersey to have a high prevalence of autism, for which there is no known cure. "I don't know of any parent who wouldn't do everything in their power to give their autistic or developmentally disabled child every chance to excel," said Sen. Loretta Weinberg (D., Bergen), a bill sponsor. "However, the enormous cost of behavior intervention . . . makes it out of the realm of possibility for many families." The Assembly may vote as early as Thursday. The Senate bill has moved to the Appropriations Committee. Ten states, including Pennsylvania, have enacted legislation requiring coverage of autism treatment. Most of the laws cap benefits and the age of those covered. Similar to Pennsylvania's law, which goes into effect July 1, New Jersey's bill would provide developmentally disabled patients under 21 with insurance benefits of up to $36,000 a year for diagnostic services and behavioral early intervention, as well as occupational, physical, and speech therapy. "In this economy, every New Jersey resident is struggling, but families with kids with special needs are struggling even more," said Assembly Speaker Joseph Roberts Jr. (D., Camden), who also sponsored the bill. "They're maxing out their credit cards and taking out second mortgages" to cover gaps in insurance. Holly Masclans broke into tears as she testified that she had mortgaged her Haddonfield home three times and drained her older daughter's college fund to obtain $750,000 in behavioral and other therapies for two children with autism. "The only thing left that hasn't been treated is their stuttering, but we're broke," she said. Roberts called expanding insurance coverage the "most significant piece of unfinished business" after passage of seven autism bills since 2007. New Jersey has improved early detection, increased research funding, studied needs of adults with autism, and created training programs for teachers and first responders. The Legislature acted after the Centers for Disease Control and Prevention reported in 2007 that New Jersey had the highest autism rate among 14 states it was studying. Researchers found autism symptoms in one in 94 New Jersey children, compared with 1 in 150 in the other states, including Pennsylvania. Roberts and other witnesses yesterday attributed the state's rate, in part, to better diagnosis. U.S. Sens. Robert Menendez (D., N.J.) and Bob Casey (D., Pa.) and Rep. Chris Smith (R., N.J.) are sponsoring federal legislation to expand autism insurance coverage. No member of either New Jersey state committee objected to the measure. Two Assembly members abstained. The New Jersey Business and Industry Association and New Jersey Association of Health Plans opposed the bill because of cost concerns. As employers' insurance plans become more expensive, workers lose coverage, Christine Stearns, the business association's vice president for health and legal affairs, said in an interview. "How, who, and what is part of a basic health plan is all part of that," she said. Stearns said that the bill was an improvement to previous versions because it required services to be medically necessary and prescribed; included a reasonable price cap; and ensured that the cost of educational services provided by schools would not be not shifted to insurers. Roberts said improved coverage would enable earlier treatment and prevent costlier problems later. He referenced a University of California, Los Angeles, study that showed that 47 percent of autistic children who received early behavioral treatment went on to be "indistinguishable from their peers" and started elementary school in mainstream classes. The annual cost difference between special education and regular-classroom instruction in New Jersey is nearly $37,000, he said. In the long term, he said, the state also would save on adult and institutional care. The lifetime cost of caring for a person with autism is about $3.2 million, Harvard psychologist Michael Ganz estimated in 2006. In his study, the first to document the societal price of autism, Ganz suspected that parents' out-of-pocket expenses were underestimated. Lisa Bilsky of Princeton said she spends hours on the telephone arguing about coverage for her 10-year-old son. Last week, she said, a claim was denied for a developmental pediatric visit. Even for benefits her insurance provides - such as occupational therapy - her son must frequently be recertified as needing treatment. Autism is "not like you sprained your ankle. It's not going away," she said. http://www.philly.com/philly/news/new_jers...t_coverage.html Thanks for posting this, Lerxster. My older son, Tyler, cited it for a persuasive paper he's writing on autism and the lack of treatment available. I thought that was a pretty kewl topic for a big brother to choose.   Update on Timothy: His teachers have surrendered. They think he has an additional diagnosis, maybe "bi-polar" or "psychosis" and want me to seek one out. i don't know what those terms mean exactly or what to do about it. i have to fill out an intake packet about 50 pages thick to get him in to see a developmental pediatrician. i am discouraged.   Something maybe kind of cool is in the works though. Through a strange series of coincidences, I remembered that my father has PKU. (He was not diagnosed until Nutri-sweet came out,,,the shit almost killed him.) PKU is an inability to properly process the amino acid phenylalanine and can result in mental retardation, seizures and death, as the internet will tell us. However, my dad is so-very-not retarded and has never had a seizure. PKU is entirely genetic. They screen babies as soon as they are born by drawing blood from their heel.   I think Tim failed his first PKU test, but passed the second one.   The internet said they could do a urine test on older kids, so I made an appt for Tim. I was surprised when we got to the lab and they wanted to draw blood. I wasn't sure if Tim would cooperate, but after he listened to me and the lab tech squabbling for a minute, he went over and sat in the lab chair without prompting. He held his arm out and said something almost like a full sentence that included "unmove" and "brave".   Apparently, it takes 5-6 weeks to get results. My sister says that if he's even "heterozygous", he could suffer some of the symptoms.   I think that as soon as we get in to see the Develop. Ped., we will also request the urine test so that we can understand what levels of phenylalanine we are dealing with, regardless of the genetic finding. :brave:

[Rolinda Bonz]

QUOTE (GhostGirl @ Feb 4 2010, 08:19 AM)

So glad Tim cooperated and I hope you get some answers.  We've been trying for about 2 years to get blood from Stephen.  No luck.  Nobody will agree to sedate him completely to get his teeth cleaned/checked and blood drawn. Keep me posted on what you find out.

thanks i will.

 

dentistry is another matter all together for Tim.

 

we found a great dentist for kids where i take both boys at the same time. that way Tim and Tyler take turns having their teeth "counted" (and cleaned). thank God for big brothers!

 

Tim doesn't really brush his teeth so much as he sucks the Aquafresh Kids off of the toothbrush. he LUVS the stuff. if i don't keep a close enough eye on him, he'll eat the whole tube. its bubblegum smelling.

 

the dentist recommended having his teeth "sealed", which sounded like a good idea at first.

but i read up on it. there is Bisphenol A in the sealant, and we're still not sure about that stuff. (that was the scary stuff that we heard about leaching into the water when it sat in plastic bottles in the sun...see Wiki,,,avoid it if you can.)

 

i think that Tim is overly sensitive to toxins, and i'm afraid of what it will do. for now, we're going without it, but i do wish he would actually BRUSH.

[GhostGirl]

QUOTE (Rolinda Bonz @ Feb 4 2010, 10:44 PM)

QUOTE (GhostGirl @ Feb 4 2010, 08:19 AM) So glad Tim cooperated and I hope you get some answers.  We've been trying for about 2 years to get blood from Stephen.  No luck.  Nobody will agree to sedate him completely to get his teeth cleaned/checked and blood drawn. Keep me posted on what you find out.  thanks i will.   dentistry is another matter all together for Tim.   we found a great dentist for kids where i take both boys at the same time. that way Tim and Tyler take turns having their teeth "counted" (and cleaned). thank God for big brothers!   Tim doesn't really brush his teeth so much as he sucks the Aquafresh Kids off of the toothbrush. he LUVS the stuff. if i don't keep a close enough eye on him, he'll eat the whole tube. its bubblegum smelling.   the dentist recommended having his teeth "sealed", which sounded like a good idea at first. but i read up on it. there is Bisphenol A in the sealant, and we're still not sure about that stuff. (that was the scary stuff that we heard about leaching into the water when it sat in plastic bottles in the sun...see Wiki,,,avoid it if you can.)   i think that Tim is overly sensitive to toxins, and i'm afraid of what it will do. for now, we're going without it, but i do wish he would actually BRUSH. I'm glad that having Tyler go helps. Watching Kerry do things like that doesn't seem to help Stephen.   And he's the same way about having his teeth brushed - I can only put a DAB of toothpaste, and mostly he just chews on the toothbrush.

[Prime Mover and Shaker]

[GhostGirl]

[GhostGirl]

Today Stephen is ten. A few pics from his party yesterday:

 

http://photos-f.ak.fbcdn.net/hphotos-ak-snc3/hs194.snc3/20152_304229304471_652604471_3446528_885240_n.jpg

 

http://photos-g.ak.fbcdn.net/hphotos-ak-ash1/hs274.ash1/20152_304229329471_652604471_3446530_6158796_n.jpg

 

http://hphotos-snc3.fbcdn.net/hs174.snc3/20152_304229299471_652604471_3446527_2274542_n.jpg