SchaferAutismReport: The Price of Keeping Up A Brave Face

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SAR "Healing Autism:Schafer Autism Report No Finer a Cause on the Planet"________________________________________________________________Monday, December 4, 2006 Vol. 10 No. 201PUBLICATION NOTE: We're back from our November holiday break! Too short, of course.We have lots of news with which to catch up: plenty of useful information, but none of it so earth shattering it couldn't wait.We'll have a little bit fatter editions until we catch up -- starting with this one. (Still no advertising.) - LS.EXTRA NOTE: Bookmark SAR Archives! Think you missed a back issue? Here are the complete archives:http://health.groups.yahoo.com/group/-AuTeach/messagesCARE* The Price of Keeping Up A Brave Face* Web Site Makes It Easier To Care For Autistic Children* Hometown Day: Free Eye Glasses

for Kids in NeedEDUCATION* Religious Special Ed GrowingADVOCACY* Canadian Autism Plan Not Good Enough: FEAT* CAN & Autism Speaks Announce Plans to Combine OperationsRESEARCH* Oxytocin Increases Retention of Social Cognition in Autism* Engineers and AutismPUBLIC HEALTH* Dental Fillings DebateEVENTS* December Debuts and Coming Attractions on Autism One Radio COMMENTARY* Stem Cells Are Where It's At CAREThe Price of Keeping Up A Brave FaceThe Sunday Times, UK http://www.timesonline.co.uk/article/0,,2092-2483575.htmlThe chancellor and his wife are being upbeat about their sick child.But, warns Galvin, who has a disabled son, optimism can be part of theproblem Upbeat. For such a little word, it delivers a hefty punch. Gordonand Brown, we learnt last week from their friends, have remainedupbeat since discovering their baby son

Fraser has been diagnosed withcystic fibrosis, a chronic, incurable condition.Upbeat follows in the wake of shocking news: it allows a necessary butshort time to assimilate the facts about a particular medical condition, toweigh the enormity of that information against the love felt for the child,to determine that the child will have the best possible life it can whateverthe odds, to accept the sincere support of family, friends and colleagueswho want to believe that the changes in your life aren’t really radical,aren’t that far from “ normal”. Yes, upbeat allows all that.Then it leaves you terribly alone.Because upbeat also becomes the face you present to the world whenasked, “How’s he doing?” (“Yeah, great thanks.”) Upbeat is what you show tothe doctors whose job it is to prepare you for the fact that your child maynot be running around with his or her siblings on the beach in the summer orsnogging a new girlfriend

or boyfriend as a teenager or having a family oftheir own one day.Upbeat is what you show frustrated teachers (should your child be ableto attend school) who can see their potential but can’t make them learn andwho turn to you for the answer, when you can’t give it. Upbeat is what as aparent you have to show to your child’s siblings, so they’re not toofrightened by what is happening to their brother or sister.In this insidious way, wearing a cheery smile, upbeat beats you up anddrags you to the ground.It becomes the ultimate betrayal of the estimated 1.9m families inBritain whose children have some kind of special educational need, who playdown the load they are carrying and rarely tell it how it is. Why? Becauseto say, “Well, he’s doing well on the medication but we were up all nightbecause he couldn’t breathe. And we’re worried because his sister is beingbullied at school because he’s different. And we’re running

short of moneybecause one of us needs to be at home in case there’s an emergency duringthe day” is not what people want to hear.I have a day job and four fantastic children — one of whom at the ageof 10 was walking to school when, out of the blue, his heart stopped. For 30minutes. I won’t go into why this happened or how he survived. Or theoperations and crises that have followed since. Or the impact on each memberof our family.While I’ve been writing this he’s been calling me to say he hasn’t gotenough money to get from the station home. He tires easily. It’s a long wayto walk and there’s a hill. How’s he doing? Yeah, great thanks. And he is.To receive such a call from him is like being granted a parallel life: mostdon’t survive his experience and yet he’s here. Whatever his difficulties,he’s out there, on a train with his mates coming back from school.But see how paralysing my upbeatness is. I don’t admit to

colleaguesthat I’m worried or that I need to get back. I rarely ask for help. I don’ttell you or them the full story. Our trips to children’s wards and GreatOrmond Street hospital have demonstrated how comparatively uncomplicated hisproblems are.To hint at the daily, gruelling realities of looking after a disabledchild is to risk — especially if you move in healthy, wealthy circles —being boring, to sound as though you’re not coping, to awaken in yourlistener the worrying prospect that the gap between their lives and yours isso vast that you and your family have become something alien and other and,among your colleagues, the suggestion you might not be up to the job.And that’s why those nearly 2m children and their families — from themost profoundly disabled to those who need some extra help in class —represent an enormous and largely voiceless constituency.As cases of autism and Asperger’s syndrome continue to rise,

we canexpect the constituency to become bigger. Medical advances mean thatchildren who would once have died have an increased chance of survival, andthe number of disabled children under 16 in the UK went up by 62% between1975 and 2002.The Office for National Statistics has admitted the true number ofseverely disabled children has been under-reported. Most mothers of disabledchildren don’t go out to work and many of these families are in debt. In asociety driven by progress and achievement, by targets and goal-setting, bythe pursuit of perfection, the reality of living with struggle and, dare wemutter the F word, failure, is largely played off stage.What happens when families do ask for help? Clare McCarthy, a41-year-old from Oxfordshire, said it all when interviewed in The SundayTimes Magazine recently: “How stupid I was when I had this disabled child. Ithought, if I need help, it’ll be there. But they didn’t tell

you thatyou’ll have to fight for every minute of it.” She’s a reasonable woman andit was a shock for her to discover, when her son was diagnosed witha rare chromosomal condition, just how hard it would be. Now he’s 14, she’strying to sort out his future schooling when her county has no sixth-formprovision for children with disabilities.Like Clare, most parents of disabled children will have to battle withtheir local authorities to acquire something called a statement of specialeducational needs. This document, in theory, entitles children to specifiedmedical and educational services.“Statements” are like gold dust: without them, entitlement isuncertain. And even with them the services that may be required, fromoccupational therapy through to speech therapy, from assistance in class toan appropriate school, are largely underfunded, and provision is patchy,sometimes non-existent.Unseemly arguments open up as

health authorities and educationauthorities both claim the other should be providing the services.+ Read moe: http://www.timesonline.co.uk/article/0,,2092-2483575.html-- > DO SOMETHING ABOUT AUTISM NOW < --SUBSCRIBE. . . !. . .Read, then Forward the Schafer Autism Report.To Subscribe http://www.SARnet.org/ $35 for 1 year - 200 issues, or No Cost Review Sub.!• • •Web Site Makes It Easier To Care For Autistic ChildrenBy Jody Covington for the Carson Times. http://tinyurl.com/y8oruuToni is relieved to give up the role as case manager and moveback into the sole role of mommy to her autistic 5-year-old son Tyler.As of Nov. 1, a comprehensive Web site, RelateNow.com, went live inNevada and has been a source of help to her.The Internet-based service "has been developed to empower parents andprofessionals to deliver more cost-effective therapy to help

children withautism reach their full potential," said RelateNow Community OutreachCoordinator Steve Shaw, who is based in Carson City. said the Web site, which can range in subscription cost fromabout $19 to $30 a month, will allow Tyler's various aides, teachers andparents a common place to go to track therapy, find the latest research andselect therapy strategiesShe said she is often the go-between with papers and messages for herson's a multiple therapists."I think it will seriously help families and remove frustration," said, who is so impressed she e-mailed the information about the new Website to the 200 families of an autism support group she founded, Reno AutismInformation Network. "It will be so much easier on the parents."Tyler's speech therapist Walden, who works with The Continuumin Reno, believes once the site for Tyler is up and running, there will be anew level of collaboration.

The site allows therapists to manage varioustasks including monitoring data, tracking progress, setting a calendar andaccessing the latest research all in one place, she said."I think it is a phenomenal idea," she said. "It really cuts down onthe parents being case managers. It will be nice to have it all in onespot."Beginning the processTo begin the process, therapists and parents are asked a series ofquestions in 14 different areas that could help identify the child'sstrengths and weaknesses, said Shaw about the site, which was created byfamily members Gatzke and Bret Shaw. The Shaws live in Wisconsin withtheir son who was diagnosed with autism.The information is then used to create a treatment plan with tailoredgoals and objectives, Shaw said."The RelateNow program then suggests activities, strategies and onlinevideo training programs about how to deliver therapy to advance a child'streatment

goals, and it ranks activities and strategies that have been ratedas most effective by parents and therapists working with children who havesimilar profiles," said Shaw. "The system can also be used to track achild's progress with his or her treatment plan over time."Shaw said the Web site is especially important in Nevada where manypeople may live in remote areas and have little access to the assistancethey need for family members with autism.According to statistics provided by the Nevada Public Schools AutismPrevalence Report, about 1,700 children within Nevada school districts havebeen diagnosed with autism, Shaw said."A recent survey of Nevada parents of children with autism foundparents need a lot more support to help their children," he said. "We hopethat RelateNow will offer one affordable way for parents and serviceproviders to help these kids reach their highest potential."Intensive therapy

costlyChildren with autism are recommended to spend a minimum of 20 hours ofintensive therapy per week, Shaw said. All this help can cost an average of$29,000 per person per year, according to a study published by the HarvardSchool of Public Health., who lives in Reno with Tyler, her husband, , and their4-year-old son, , said the $30 a month membership to Relatenow is moneywell spent for a case manager. Typically, to hire a case manager would costthat per hour, she said. She and her husband, who is a postal worker,already spend about $3,000 a month for Tyler."It allows me to move back into the mom role," said , who willbe happy to give up her roles as case manager, lead tutor and programdesigner.The site is also geared toward helping parents whose children haveonly recently been diagnosed. There are testimonials from other families,jargon-free medical advice columns from experts, countless

tips andresources. It is designed to cut down on the number of hours parents andteachers might ordinarily have to spend researching what might be the nextstep once a skill is mastered. This way the system will make suggestions andrecommend activities."It works well with whatever treatment option you want to do," said. "It works well with all methods."[Thanks to Bret R. Shaw.]• • •Hometown Day: Free Eye Glasses for Kids in Needhttp://www.givethegiftofsight.com/events/htd/Lenscrafters will be sponsoring a community day on December 5th. If you have a youth in need of new glasses, contact a Lenscrafters in your area and get their prescriptions filled for free. You'll need a valid prescription and a letter from an organization stating financial need (with the organizations tax ID # on it). For more information, visit / www.givethegiftofsight.orgOn Hometown Day, held annually the

first Tuesday in December,Luxottica Retail stores across the United States and Canada partner with ouraffiliated doctors of optometry to create a special day of giving. Storeswork with local agencies, charities and schools who select recipients basedon visual and financial need. Then, our stores open their doors early forthese patients to receive a free eye exam and new pair of eyewear.This is our 13th year for Hometown Day - our largest day of giving. Todate, we've helped over 200,000 people through this event. This year, ourgoal is to help 25,000 additional people in need.• • •EDUCATIONReligious Special Ed GrowingBy Merry Firschein, NJ.http://tinyurl.com/ykcy8eA shortage of programs and lack of funding make it difficult forparents to find appropriate religious education for children with learningdisabilities.In many cases, families who would have preferred religious school

mustenroll their child in public school programs instead. But religiouseducators are expanding their resources and finding new ways to deliverreligious studies to special-education students.A new school for special-needs Orthodox Jewish children recentlyopened in North Jersey -- giving some parents an alternative to anafter-school program run in River Edge.Choices are still somewhat limited for Catholic parents looking forthe same sort of full-time parochial education, but many parishes also holdafter-school programs. The Newark Archdiocese, which includes Bergen County,tries to mainstream children with learning disabilities, and hasspecial-education classrooms or resource rooms within various churchschools, said the Rev. Hanbury, the archdiocese's vicar for educationand superintendent of schools.The Sinai School, an Orthodox Jewish private school for children withlearning disabilities, has been a blessing

for Laurie Gopin of Bergenfield.The removal of a brain tumor when he was 18-months-old left Gopin'sson, Shmuel, now 5, with some communication delays. Gopin and her husbandenrolled him in a Bergenfield afternoon public school program last yearbecause the district could address his disability. But the family was stillnot satisfied; they wanted him to learn about his Orthodox Jewish heritage."We wanted him to be in a religious setting, especially because heloves all the religious aspects of school," said Gopin, of Bergenfield. "Wefelt at this time that a religious program would benefit him and make usfeel more comfortable."Funding is the main reason there is no Catholic equivalent to theSinai School, said Jim Goodness, a spokesman for the archdiocese. "Toprovide that full range of services that public districts tend to do, it's alot more money than we can afford," he said.Catholic parents pay about $3,500 for an

elementary education, andabout $8,000 to send a child to parochial high school within thearchdiocese, Goodness said. Parents pay a nominal fee, $80, if they canafford it, for an after-school program at St. the Evangelist Church inBergenfield, said a Andrade, who oversees all religious education in theparish.Tuition is $27,500 a year at Sinai School. The school also is fundedthrough private donations and the Jewish Federation, a non-profit umbrellaorganization. It is not eligible for state funding because it is religiouslyaffiliated.Catholic after-school education is all parish-based, said Pihokker, director of the archdiocesan office of catechetics. And it's up toeach church to educate their children. There also are several "magnetcenters, parishes that open their doors to children with severe specialneeds in different areas of the diocese," he said.Sinai is the only Jewish private school in Bergen

County completelydedicated to children with learning disabilities.The school, housed in a wing of Yavneh Academy in Paramus, has 18students, from 4½ to 10 years old, in three classes: a kindergarten, afirst/second-grade class, and a third/fourth-grade class. Students aregrouped according to ability and not solely by age.There are five Catholic parish centers in the Newark Archdiocese, andtwo in Bergen County: St. the Evangelist in Bergenfield and St. Anne'sin Fair Lawn, said Ann Masters, director of the archdiocesan department forpastoral ministry for persons with disabilities. Fifty parishes in thearchdiocese provide some sort of inclusive religious education. Of those, 26are in Bergen County, she said.+ Read more: http://tinyurl.com/ykcy8e• • •ADVOCACYCanadian Autism Plan Not Good Enough: FEATBy Holmes. http://tinyurl.com/yf5kb4The federal government’s five-point plan to

improve knowledge ofautism spectrum disorder has been criticized by parents who’ve lobbied foryears to have government help pay to treat their children.“I find it very disappointing,” Autism Society of B.C.’s Mike said.“Nothing in it addresses the issue of treatment for these children."“This is a slap in the face,” South Surrey’s Roxanne Black said.The plan, announced last week, promises:– an ASD symposium to develop and spread knowledge among health careprofessionals, researchers, community groups, teachers, and family;– to look into establishing a research chair focusing on treatment forASD;– consultation on feasibility of developing a surveillance program toshape ASD programming and research;– a page on Health Canada’s website steering people to ASDinformation; and,– to designate the Health Policy Branch of Health Canada as the ASDlead for actions at the federal level.Health Minister Tony

Clement said the new measures “will help tobetter address the many challenges individuals with (ASD) and their familiesare facing."For many in B.C., the biggest hurdle in treating their children iscost. Those who can afford applied behavioral analysis – successful in 40per cent of autistic children – pay up to $40,000 a year. The B.C.government limits support to $20,000.South Surrey-White Rock-Cloverdale MP Russ Hiebert said Clement’s planmeets federal responsibilities, while respecting a mandate to deliverfunding.He proposed finding “innovative funding methods” for ASD care;consultation with all stakeholders on the surveillance program; and morefunding for autism research.Hiebert said “development of innovative funding” means government willbring provinces to the table and encourage them to offer services comparableto Alberta, which fully funds autism treatment.The federal Conservative government is doing its

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