From rosse at ncf.ca Mon Jul 6 22:20:26 2009 From: rosse at ncf.ca (Elspeth Ross) Date: Tue Jul 7 02:33:48 2009 Subject: [Fasd_canadian_link] Ask hard questions about addiction Message-ID: <6.2.5.6.2.20090706222013.04337740@ncf.ca> "...Addiction is about the child born of an alcoholic mother who consequently lives his or her life dealing with the effects of fetal alcohol syndrome...." Ask hard questions about addiction Cathy McDowell. Times - Colonist. Victoria, B.C.: Jun 17, 2009. pg. A.13 Re: "Enabling addiction is no solution," letter, June 14. Not all substance abusers -- whether it be alcohol or drugs -- do so because they have made poor choices in their lives. Were that true, I have little doubt that many would welcome the opportunity to go into rehab so that they might become clean and sober. Addiction is more than poor choices. Addiction is about the child born of an alcoholic mother who consequently lives his or her life dealing with the effects of fetal alcohol syndrome. Addiction is the crack baby having to be weaned off drugs ingested in the womb long before he ever makes his first sound in this world. It's about children who are abandoned by their parents, or worse, used as collateral as a means of financing their own addiction. Addiction is a response, albeit a poor one, to a world that has failed to provide the necessary supports to a human being when he or she needed it most. Safe injection sites and crack kits are not the solution; neither is incarceration, forced rehab or low-end employment. Victoria has been tossing around solutions without looking at the problem. When do we stop treating people as a balance sheet and start asking the really hard questions about who they are? Addicts are human beings with a story. Perhaps it's time to listen to what they are saying and hear what they have been unable to say. Then, maybe, we can start to make inroads toward a win-win solution for all parties. Cathy McDowell Victoria Credit: Cathy McDowell; Times Colonist [Illustration] Photo: Debra Brash, Times Colonist / A woman smokes crack cocaine in downtown Victoria. Letter-writers say real solutions are needed for people afflicted with drug addiction. ;; Caption: Enabling addiction is no solution Troy Sutton. Times - Colonist. Victoria, B.C.: Jun 14, 2009. pg. D.3 We all have troubles, and do our best to deal with the ups and downs life throws us, but a bad choice is exactly that and shouldn't be clouded and manipulated into something else. We all, regardless of what social-economic category we fall into, are made aware of certain realities in life, and the fact that drugs are bad for you is one of them. To call drug addiction a disease is a slap in the face to anyone stricken with a legitimately involuntary ailment. The fact that we can't count on our elected officials and police force to do their jobs and keep these drugs from getting into the country or ensure absolute punishment for trafficking and production is disappointing, but to misallocate public funds for a "safe" injection site or crack kits is appalling and furthers a serious problem. Incarcerate the addicts in forced rehab clinics so they get properly cleaned up, and then send them to fill the low-end jobs in small towns and cities all across the country (low-end jobs that in a small town can buy you a house), but don't take money that can be better spent funding education or health care and waste it on turning taxpayers into willing participants in something the majority of us know is wrong and as a result never do. Troy Sutton Victoria Credit: Troy Sutton; Times Colonist [Illustration] Photo: Debra Brash, Times Colonist / Victoria police make a downtown drug arrest last month. A letter-writer says classifying drug use as a disease is an insult to people suffering with an involuntary illness. ;; Caption: -------------- next part -------------- An HTML attachment was scrubbed... URL: /pipermail/fasd_canadian_link/attachments/20090706/61851967/attachment.html From rosse at ncf.ca Mon Jul 6 22:20:47 2009 From: rosse at ncf.ca (Elspeth Ross) Date: Tue Jul 7 02:34:01 2009 Subject: [Fasd_canadian_link] Graduates of hard knocks Message-ID: <6.2.5.6.2.20090706222038.043375f8@ncf.ca> "...Some have attention deficit disorder or another learning disability, or suffer from fetal alcohol syndrome, abuse drugs or alcohol...." Graduates of hard knocks; Diploma offers street youth opportunity to beat the odds Joanne Laucius. The Ottawa Citizen. Ottawa, Ont.: Jun 19, 2009. pg. C.3 As high school graduations go, it's definitely unorthodox. Family members rarely attend. Sometimes the graduates don't even show. This year, one who did arrive at the ceremony brought her two dogs. The high school on the second floor of Operation Come Home's Murray Street centre is Ottawa's one-room school for street kids. In the school's three-year history, about 50 students a year sign up for courses, but only five graduate. This year, three made it to the cap-and-gown ceremony in the former St. Brigid's church. The number may seem low, but every one of those graduates has beaten the odds, says Manon Seguin, principal at Lester B. Pearson Catholic High School, which runs the program with Operation Come Home. "Every time we have a student graduate, it's beyond our expectations," she says. "We're so proud." Seguin knew Operation Come Home would make a good partner when she heard its motto: "We prevent homeless youth from becoming homeless adults." The best way to do that is through education, says Seguin. There are about 150 young people living on Ottawa streets, and more in the summer, estimates Operation Come Home executive director Elspeth McKay. Of those, about three dozen will find a bed in the Youth Services Bureau shelter, with others looking for spots in adult homeless shelters. Some "couch surf," camping out in an acquaintance's living room until they wear out their welcome. Sometimes one has enough money to rent an apartment and nine friends move in. The issues that push or pull them onto the streets also keep them out of the school system, says McKay. Most have been kicked out of at least one high school and few are on speaking terms with their families. More than half of female street kids are pregnant or have children. Some have attention deficit disorder or another learning disability, or suffer from fetal alcohol syndrome, abuse drugs or alcohol. In the past, Operation Come Home worked informally with youth who had literacy problems. The partnership with Lester B. Pearson gives street kids access to the Ontario curriculum. Most students are seeking a high school certificate, which essentially covers Grade 10. Others get a general educational diploma or GED, which requires seven hours of tests covering five subjects. A few are chasing a Grade 12 diploma. Students come and go as they please, but most spend about two hours a day in the classroom with teacher Elizabeth Thompson. Educators understand that students who fail at least one course before the end of Grade 10 face the greatest chance of dropping out. Thompson knows all her students won't stay. "Some we just lose. They quit coming, or they move along." Julien Lavallee, 23, hopes to write his GED in August. "I needed to do something with my life," says Lavallee, 23, who left home at 16. By his own count, he tried and was kicked out of at least five high schools. He has crossed Canada three times and likes to spend the winter wherever he can get a job in a kitchen and a cheap snowboarding pass. Sometimes it doesn't work out. "I would get fired or quit," he says. Alex Gamache, 18, has been to four high schools. He lives in a "transitional unit" at the young men's shelter where he has a room with a bed and a kitchenette. Gamache wants to go to trucking school and needs about 14 more credits, a process he figures will take a couple of years. "I just love it here because there's peace and quiet," he says. "At all the other schools, there was a lot of talking." Tasha Weigand, 16, started school at Operation Come Home in May after quitting school last year. "There were a lot of things going on in my life. With one of my teachers, I didn't want to sit there and listen," says Weigand, who lives in Vanier. Her parents help her out with food. She's a diabetic and they also bring her insulin. Operation Come Home reunited some 100 street kids with their families across Canada last year, but it often takes five to eight years to get a street kid off the streets, says McKay. Credit: Joanne Laucius; The Ottawa Citizen [Illustration] Photo: Wayne Cuddington, The Ottawa Citizen / Julien Lavallee, 23, hopes to write his GED in August. He wants to become a licensed practical nurse. ; Photo: Wayne Cuddington, the ottawa citizen / Operation Come Home runs a high school equivalent classroom, jointly with Lester B. Pearson High School, at their Murray Street location. From left, Alex Gamache, 18, OCH executive director Elspeth McKay, Sheriffa Mohammed, 18, Tasha Weigand, 16,(front), teacher Elizabeth Thompson and Julien Lavallee, 23. ;; Caption: -------------- next part -------------- An HTML attachment was scrubbed... URL: /pipermail/fasd_canadian_link/attachments/20090706/bf961d30/attachment.html From rosse at ncf.ca Mon Jul 6 22:48:26 2009 From: rosse at ncf.ca (Elspeth Ross) Date: Tue Jul 7 02:53:08 2009 Subject: [Fasd_canadian_link] Main reason for native misery missed--bad responsibility Message-ID: <6.2.5.6.2.20090706223846.04325b18@ncf.ca> [This article also published with the title "Can't blame colonialism anymore" in the Ottawa Citizen on June 30.] "...Health Canada's fetal alcohol spectrum disorder program is there for "children from age zero to six, and women of child-bearing age" to "reduce the number of babies born with FASD" and "support children who are diagnosed with FASD and their families."..." Main reason for native misery missed--bad responsibility Naomi Lakritz. Calgary Herald. Calgary, Alta.: Jun 26, 2009. pg. A.12 UNICEF's report on the health of Canada's aboriginal children, the Canadian Supplement on the State of the World's Children, points fingers of blame in all the politically correct directions --the federal government, the lack of funding, the crowded housing, the colonial legacy, the residential schools, and so on. In his foreword, UNICEF president and CEO Nigel Fisher asks what kind of a Canada we want: "As a country, do we accept that only half of our aboriginal children will complete high school? . . . Is the Canada we want a country where we resist funding the 22 per cent gap in child welfare services between First Nations and Canadian children on average, funding that could strengthen families instead of removing children from them? Do we want to live in a country where the result of that disparity is that more aboriginal children are in government care today than during the peak years of the residential schooling era?" Nice rhetorical flourishes, but same old platitudinous answer. Throw more money at the problem. The reason it doesn't work is that one factor has been left out of the equation--personal responsibility on the part of the people to whom the money is going. Adding 22 per cent more funding is not going to keep children out of foster care or convince them to finish high school. Better parenting will do that. And better parenting is a conscious choice, regardless of whether a parent went to residential school. Pretending more money is the answer is like saying aboriginal people are not thinking human beings who can look at their circumstances, rise above the ugly stuff and decide they're going to do things differently with their kids. It's the kind of decision that, over the centuries, millions of people in sordid situations have made for their children, regardless of race, creed or culture. The report says on one Manitoba reserve, between 55 and 101 babies per 1,000 are born with fetal alcohol syndrome. FAS makes no racial distinctions. You can be black, white, red or purple polka-dot, but if you drink while pregnant, your baby is going to suffer. Instead of dithering behind what is usually referred to as "culturally appropriate" communication, try plain language. Don't drink while you're pregnant. If you need help to stop drinking, Health Canada's fetal alcohol spectrum disorder program is there for "children from age zero to six, and women of child-bearing age" to "reduce the number of babies born with FASD" and "support children who are diagnosed with FASD and their families." The UNICEF report also wrings its collective hands over the 20 per cent lower immunization rates for children on reserves than for children in the rest of Canada: "First Nations children subsequently suffer from higher rates of vaccine-preventable diseases. . . . We must understand the health status of First Nations children within the broader context of the socio-economic conditions they face. We must also be aware of the inherent inequality in the Canadian governance structure that places First Nations children and families at a disadvantage." Actually, it's simpler than that. When the immunization clinic comes to your community, take your child to get vaccinated. Health Canada has a "targeted immunization strategy "aimed at "First Nations children under the age of six living on-reserve or in Inuit communities." But all the programs in the world aren't going to make a bit of difference if parents don't bring their children to the immunization clinics. The report says: "Canada's long history of European colonization is at the root of the social inequalities and poor health that persist among aboriginal peoples today." Yet Health Canada's website lists everything from an aboriginal Head Start on-reserve program, to prevention programs for tuberculosis and blood-borne diseases to prenatal nutrition programs, to maternal and child health initiatives. And why is "colonization" to blame for poor health among aboriginals, when other Canadians are told that their poor health is a direct result of their own lifestyle choices and it's up to them to do something about it? The high rates of TB in First Nations communities are usually blamed on the crowded, unsanitary housing conditions. In a 2002-03 national survey, 40 per cent of people in band housing said they had mildew or mould in their homes. Nobody should have to live like that. So how about teaching people to repair and build their own houses instead of waiting for the government to do it? Or by bringing in Habitat for Humanity, which has partnered with the Canada Mortgage and Housing Corp. since 2007, to do just that? Last month, construction of the first on-reserve Habitat home got underway at Alderville First Nation in Ontario. Some parts of the report do talk about the need for community-based initiatives, but there is far too much deflecting of responsibility elsewhere. I'm convinced the kind of Canada most Canadians want is one which boasts many more Aldervilles and less futile talk about colonization. History can't be undone, but it can be overcome when individuals take responsibility for themselves and decide to work toward something better. nlakritz@theherald. canweSt.coM Credit: Naomi Lakritz; Calgary Herald -------------- next part -------------- An HTML attachment was scrubbed... URL: /pipermail/fasd_canadian_link/attachments/20090706/a93a4d85/attachment-0001.html From rosse at ncf.ca Mon Jul 6 22:50:48 2009 From: rosse at ncf.ca (Elspeth Ross) Date: Tue Jul 7 02:53:23 2009 Subject: [Fasd_canadian_link] Four letters on Lakritz article on responsibility/colonialism Message-ID: <6.2.5.6.2.20090706222525.043379d0@ncf.ca> www.canada.com 6 Jul 2009 Ottawa Citizen Natives don?t deserve a good scolding Re: Can?t blame colonialism anymore, June 30. Columnist Naomi Lakritz is under the impression that the only thing First Nations people require is a good scolding from a stern mother figure. There have been volumes written and studied on the issues that Lakritz dismisses as being so easily solved. Some of those things I disagree with strongly, but the people making those arguments had some substance to their thoughts. I have spent all of my life living among indigenous people. I was chief at the Rolling River First Nation for 10 years prior to becoming a grand chief two years ago. I have seen the effects created by decades of attempts to destroy our culture, ways of living and family structures. The government also forced us into financial poverty. First Nations across the country are working on these problems by trying to take control of child and family services, by trying to create economic development and by working on many other aspects of indigenous people?s lives. Even the people we fight against in government will concede that the challenges are immense. Canada?s history of colonialism and economic oppression has become irrelevant, Lakritz argues. Problems in health care? According to Lakritz, the solutions are on the Health Canada website. She must think pamphlets can make up for severe shortages of doctors, clinics and medical transportation. Yes, First Nations will be taking responsibility for our lives and we will begin by using the courts, activism and other strategies to regain control of our natural resources. GRAND CHIEF MORRIS J. SWAN SHANNACAPPO, Winnipeg, Southern Chiefs? Organization (Manitoba) www.canada.com 6 Jul 2009 Calgary Herald Lisa Wolff, Toronto Culturally appropriate Re: ?Main reason for native misery missed ? bad responsibility,? Naomi Lakritz, Opinion, June 26. [same article as "Can't blame colonialism anymore"] UNICEF Canada?s report on the health of Canada?s aboriginal children argues that we cannot sustain a productive economy and a cohesive society without ensuring that aboriginal children have the same chances for a healthy life as other Canadian children. It argues that this has to be the collective responsibility of all Canadians. Yes, it states there must be increased funding where underfunding has been identified (the auditor general in 2008 and the Senate committee on public accounts in 2009 have documented underfunded services relative to what other Canadians enjoy); but it also argues for spending differently in some cases (such as in vaccinations to prevent illness rather than airlifts to hospitals when disease strikes). Attending to children first and resolving jurisdictional disputes later costs nothing. The report emphasizes that Canadians are taking encouraging actions. The voluntary sector is extending services to aboriginal communities, and universities are extending research projects in partnership with them. Aboriginal communities have many of the answers and can lead the culturally appropriate, community-based services. Most Canadians benefit from public investment in health services that are culturally appropriate. Aboriginal children deserve no less. www.canada.com 4 Jul 2009 Ottawa Citizen Aboriginal children?s health a collective responsibility Re: Can?t blame colonialism anymore, June 30. Contrary to columnist Naomi Lakritz?s interpretation, the UNICEF Canada?s report on the health of Canada?s aboriginal children does not suggest the solution is to ?throw more money at the problem.? The report argues that we cannot sustain a productive economy and a cohesive society without ensuring that Aboriginal children have the same chances for a healthy life as other Canadian children. It argues that this has to be the collective responsibility of all Canadians. Yes, it states that there must be increased funding where underfunding has been identified. Both the Auditor General in 2008 and the Senate committee on public accounts in 2009 have documented under-funded services relative to what other Canadians enjoy. But it also argues for spending differently in some cases such as in vaccinations to prevent illness rather than medical airlifts to hospitals when disease strikes. And where jurisdictional disputes put children in jeopardy, attending to children first and resolving disputes later costs nothing. The UNICEF Canada report also emphasizes that while governments have the responsibility to ensure equal treatment of children under legislation and in service provision, encouraging actions are already being taken by Canadians across all sectors. The voluntary sector is increasingly extending services to Aboriginal communities, and universities are extending their research projects in partnership with them. Our report?s authors, experts on Aboriginal child health, are clear that Aboriginal communities have many of the answers and can lead the culturally appropriate, community-based services that will make a difference for children. Health is more than the luck of biology or of personal lifestyle choice. Most Canadians benefit from public investment in a range of health services that are culturally appropriate to them. Aboriginal children deserve no less. Toronto UNICEF Canada www.canada.com 3 Jul 2009 Ottawa Citizen Colonial mindset Re: Can?t blame colonialism anymore, June 30. With crystalline insight, columnist Naomi Lakritz diagnosed the cause of aboriginal children?s poor health. It?s their irresponsible parents. For centuries, aboriginal inferiority was central to justifying their colonization and dispossession here and elsewhere. Lakritz is washing her hands of responsibility for Canada?s colonial legacy. Rather than impugning parents (or throwing money at problems), why not look around at what is working to improve children?s health in impoverished circumstances. The National Aboriginal Health Organization is such an information source for Lakritz. When she replaces her colonial mindset with some informed thought, she will, I?m sure, have something useful to offer. RUSSELL BANTA, Ottawa -------------- next part -------------- An HTML attachment was scrubbed... URL: /pipermail/fasd_canadian_link/attachments/20090706/cf1b2963/attachment.html From rosse at ncf.ca Thu Jul 9 18:01:29 2009 From: rosse at ncf.ca (Elspeth Ross) Date: Thu Jul 9 22:04:12 2009 Subject: [Fasd_canadian_link] PEI Hosting First Meeting of Atlantic Intergovernmental Fetal Alcohol Spectrum Disorder Partnership Message-ID: <6.2.5.6.2.20090709180118.0420e938@ncf.ca> http://www.gov.pe.ca/news/index.php3?number=news&dept=&newsnumber=6380&lang=E Prince Edward Island Canada News releases June 19, 2009 For immediate release PEI Hosting First Meeting of Atlantic Intergovernmental Fetal Alcohol Spectrum Disorder Partnership Health The first official meeting of the Atlantic Intergovernmental Fetal Alcohol Spectrum Disorder (FASD) Partnership Committee, hosted by PEI?s Public Health Agency, is currently underway in Brackley. FASD describes a range of alcohol-related disorders associated with the use of alcohol during pregnancy. These harms to the child can include brain damage, vision and hearing problems, slow growth and birth defects such as bones that are not properly formed or heart problems. A report issued in December 2008 concluded that FASD is an emerging issue in Atlantic Canada and that awareness of the emotional and financial burden experienced by families affected by FASD is relatively low. The newly formed Atlantic Intergovernmental Partnership provides a forum through which the Atlantic provinces can take steps to reduce the occurrence of FASD, while promoting the education, awareness and support for this issue within the region. ?FASD awareness programs are very important in our efforts to curb incidence rates on Prince Edward Island. Islanders are not well informed of the dangers associated with consumption of alcohol during pregnancy,? said Dr. Lamont Sweet, Deputy Chief Health Officer and member of the Atlantic Partnership committee. ?Being a part of this partnership provides us the opportunity to share resources and strategies, enhancing our abilities to bring wide-spread awareness of this serious issue to Islanders and Atlantic Canadians.? In Canada, prenatal exposure to alcohol is one of the top three reasons for developmental delays in children. It is estimated that nine out of every 1,000 babies born in Canada are affected by some form of FASD ? approximately 13 children in Prince Edward Island are diagnosed with some form of the disorder each year. Dr. Kathryn Bigsby, Head of Pediatrics at the Queen Elizabeth Hospital, notes that there is no known safe amount of alcohol that can be consumed at any stage of pregnancy; therefore refraining from the consumption of alcohol during pregnancy and when planning pregnancy is the safest option to ensure prevention of FASD. ?Stopping alcohol consumption as soon as possible and looking after your health are the best ways to reduce the risk of harm to you and your baby,? said Dr. Bigsby. Backgrounder In December 2008 the report, ?Forward, Together: Addressing Fetal Alcohol Spectrum Disorder (FASD) in Atlantic Canada,? was released. The two-phased report is an effort to document FASD in the region; identifying gaps, priorities, and opportunities related to FASD; and provide recommendations for consideration for future direction in Atlantic Canada. The report concludes FASD is an emerging issue in Atlantic Canada. The mandate of the Atlantic Intergovernmental FASD Partnership is: ? To develop partnerships which foster collaboration and communication between the provincial and federal government in the Atlantic region; ? To identify gaps, challenges and opportunities in order to set priorities for FASD work in Atlantic Canada; ? To pool resources to provide public education on FASD in the Atlantic region; and ? To advocate for, encourage and promote Atlantic FASD research. -30- Media Contact: Laura Jones -------------- next part -------------- An HTML attachment was scrubbed... URL: /pipermail/fasd_canadian_link/attachments/20090709/70b7cec1/attachment.html From rosse at ncf.ca Wed Jul 15 11:09:51 2009 From: rosse at ncf.ca (Elspeth Ross) Date: Wed Jul 15 15:16:18 2009 Subject: [Fasd_canadian_link] More than just a soccer team Message-ID: <6.2.5.6.2.20090715110942.03760df0@ncf.ca> "...Kids with Down syndrome ...kids with autism, kids with anxiety disorders, brain injuries, fetal alcohol syndrome and cancer...." More than just a soccer team; Blazin Dogs and Pups founded to show that every child has something to offer Yvonne Zacharias. The Vancouver Sun. Vancouver, B.C.: Jul 11, 2009. pg. A.6 Abbe Gates sat on the grass of a Vancouver playing field, surveying the baubles of colour flitting this way and that in front of her. Her eyes were filled with joy. No one could have predicted that the Blazin Soccer Dogs would take off the way it did. When she started the team last summer along with three other mothers, they had 27 players. Now the very special team has players from all over the Lower Mainland and has had to set up a separate division for the younger players, ages four to eight, called the Blazin Soccer Pups. In total, there are almost 100 players. This team is a little different from what you will find on most playing fields. Almost all of the children have special needs. Kids with Down syndrome like Gates's daughter Sadie, kids with autism, kids with anxiety disorders, brain injuries, fetal alcohol syndrome and cancer. There is even one blind child who can play thanks to a special ball that shakes. Kids from a group home come with their workers, too. "Their needs are very high, but they come every week," said Gates, who launched the team after her daughter was turned away last summer from a regular soccer team. "They are such troopers." Added Gates, "We turn away no one." Disparate strands in the human genome, everyone comes together to weave a moving tapestry of magic on the field. Parents and coaches all agree that the phenomenal growth of this special needs teams underscores the need in the community for sports teams for kids who do not fit easily into the mainstream. After facing so much rejection, the kids love getting a uniform and being part of a team. And the parents, who aren't allowed on the field, get an enforced break from the often overwhelming responsibility of raising a child with special needs. They get a chance to sip coffee, survey the sea of love in front of them, spot their child in it and connect with each other on the sidelines. "The friendships that are made are unbelievable," said Gates. "There are so many families who feel so alone. "They talk schools. They talk therapies. Their conversations are amazing." KALEIDOSCOPE OF PINNIES Surveying the field on a sunny Saturday morning, you see children in red pinnies, black pinnies, green pinnies, yellow pinnies, creating a whirling kaleidoscope of pinnies. Each colour denotes a level of play. As abilities change, so do the pinnies. That way, everyone gets to play to the best of his or her ability. Various stations are set up to teach kids the basics like passing, dribbling and shooting. There are plenty of hugs, high-fives, smiles and cheers for anything and everything. Then there is the odd child who is kicking a ball on the sidelines, working one-on-one with a coach or volunteer. Some of these children are natural loners and can be overwhelmed by team play. That's okay. No one is forced to do anything they don't want to do. The 10 coaches take their jobs seriously, said Gates, adding the team tries to keep costs down by relying on volunteers and the help of Macey's Sports in North Vancouver, which has donated equipment and uniforms. The team is always looking for more coaches and volunteers. You don't need experience to apply. All you need is a heartfelt desire to help. Michael Evans, a lawyer in New Westminster, found he had that desire. Throughout his hectic work week, he looks forward to coming here to coach even though he does not have a child on the team. Using his experience of playing soccer for 15 years, Evans came on board at the beginning of last summer. "I got here and it was phenomenal. When they had the opening ceremony, a lot of the parents were in tears and a lot of the coaches, including myself, were almost in tears just to see how happy everyone was." Evans said there is the odd behavioural challenge on the field but that he coaches soccer as he would anywhere and the players respond quite well. "I work in a pretty hostile atmosphere so coming here just makes my week. Just seeing how carefree and happy they are." Eighteen-year-old Emily Nantel was grateful that the team let her start coaching last year even though she had no experience in the role. She has to admit that at times she is flying by the seat of her pants. "You are dealing with kids with physical barriers. You don't always know their special needs. With some, you don't know what their understanding is." Some kids are just happy to kick the ball; others want a higher level of play. She has to make things up as she goes along. Nantel now coaches both here and on a regular soccer team. The difference? The parents, she says without hesitation. "The ones here are so accepting, so amazing. They look at everything with a laugh." Nish Lal, a special education assistant at Mount Pleasant elementary school, coaches all the sports there. Yet he still finds time to come out and coach the Blazin Soccer Dogs and the Blazin Soccer Pups. He is not surprised by the large turnout. "I work in the school board. I see the lack of resources for kids with special needs." Lal said the initial challenge was trying to address the different disabilities and figuring out who does what and who needs what. The trick, he said, was concentrating on what the kids could do rather than on what they couldn't do. It's not about judging kids. It's about working with them individually and helping them meet their own expectations. In the middle of our interview, Sadie Gates saunters over. She has something she wants to tell the reporter. "I love my teammates. I love my friends because they are always nice to me. I like being on the team." Then the sweet-natured little girl runs back to the field. Well done, Sadie. Lal finds that the kids here have less attitude and less cockiness than on a regular team. For him, the reward is seeing their skills improve and their social networks expanding. "So many of our kids now phone each other. They get invited to each other's parties. They connect on Facebook and send each other messages. For some of them, it's hard to talk but they can type." Lal has to scoot back to the field. It's a bit chaotic out there. His help is needed. Thirteen-year-old Hannah Pemberton and 15-year-old Andrew Bingham take a few minutes out from the game. You can tell by their flushed faces and staccato answers that they love being here. Hannah is a bundle of energy and a lithe athlete with fluid movements on the field. She lists a long string of sports that she plays, yet she is not under-challenged here. She particularly likes the fact that although she plays as a forward mostly, she has also played defence sometimes and has occasionally been the goalie. Andrew, who has Down syndrome, also plays a variety of sports but seems to have found a home on the team. He keeps repeating that he has so much fun here and has "a peaceful time." The jumble of players and coaches seems more at times like a surging sea of confusion. No matter. Andrew has found his place in it. A MOTHER'S PAIN During an after-game barbecue celebrating the wrap-up of the summer season, Roni Gawdin is standing in line. She describes the pain she feels knowing that her daughter, Ashley, is not like other 16-year-olds. For one thing, Ashley can't eat the food here. All her food has to be pureed or she will choke. With a warm honesty, Roni describes how she has struggled with her feelings over having a child with such special needs. She is grateful for being married to a wonderful man, but she worries about what will happen to her daughter if she outlives her parents. Many parents in her shoes do not admit to such things. Small victories are savoured every bit as much as the tasty food served up here. Such as the occasions when "normal" children take the time to befriend Ashley. Or the time she scored a goal here. No matter that there was no defence and no attempt to stop the ball. Ashley didn't particularly notice. When the ball went in, a loud cheer went up. Ashley's face lit up. A small victory. Something to savour. It's wonderful, said Gawdin, for parents to be able to come to a place where their child isn't always the last to be picked. "The welcome we got here was amazing." As Ashley and her mother prepare to depart from the field, Gates gently bestows a medal around the player's neck. Gates's son, Lucas, who has high-functioning autism but ably handles the microphone, announces that she is leaving. Everyone claps and cheers for Ashley. Lal comes over to tell her how special she is and to say good-bye. SPORTS PROVIDE A LEG UP There are people on this field who have looked at the world of sports and special needs from two sides. Barbara Laird, who was one of the founding four mothers along with Gates, Kim Pemberton and Sheryl Palm, is one of them. Besides having a 25-year-old daughter with Down syndrome, she was a teacher and now does advocacy work helping parents with special needs children who are having difficulty with systems, mostly the education system. She said soccer teams like this are important because they help these children to keep up and fit in with other kids. Other kids tend to get good at sports at a young age while these developmentally-delayed children lag behind, widening the gap between the two groups. "When our kids go to the public school system, they get to Grade 2 and 3 and they can't play with the other kids because the other kids have been in team sports already. While these other kids are getting really competitive, our kids don't have the basic skills yet. So even in physical education, they can't compete." The Blazin Soccer Pups in particular will give the kids with special needs a leg up by giving them basic skills, an idea of how the game is played and just a slight taste of competition although there is an effort to play down the latter because a lot of these kids don't take well to it. Laird is impressed with how well these children are learning the game. Many have, for example, become very adept at kicking a soccer ball with the side of the foot. But it's important, she said, to keep the pressure levels down. "For some of them, their attention span is really short. They come out here and five minutes is good enough. It's all they can take." Parents are advised that it's wise for their child to bow out while they are still happy. Don't wait until they are having meltdowns. Although the team has been going only since last summer, it has had its share of triumphs and tragedies. Their roster is obviously more fragile than most. One of their players recently died of cancer. The team had a tribute to him on the field a few weeks ago. The kids released yellow balloons into the air in his memory. The child loved SpongeBob SquarePants so one of the coaches printed and laminated an image of the popular television character as a memento for each of the kids. Abbe Gates said she has it on her fridge. The team gave the child's parents his uniform. His dad gave a beautiful speech. It was a special team's special way of saying goodbye. OUT OF THEIR SHELLS Coach Peter Tom-Wing, who has a son with Down syndrome, has to admit he was a little skeptical at the start. "Initially, we thought it was going to be a logistical nightmare in terms of working with all the disabilities, but when we started, it was phenomenal. All the kids were listening." Tom-Wing said it is quite special to see how these kids care for each other. "A lot of the kids don't like being aggressive. They just want to do it for the fun because they are more concerned that they might hurt the other kid which is sometimes amusing to see." For more information, go to http://soccerdogs.ca; if you wish to contact the team, send an e-mail to abbe@soccerdogs.ca yzacharias@vancouversun.co Credit: Yvonne Zacharias; Vancouver Sun [Illustration] Photo: Jenelle Schneider, Vancouver Sun / Braden Sabin (left), Josh Kirkegaard and Blythe Hanna get ready to play. They are members of the Blazin Soccer Dogs and Pups, teams founded last summer by mothers of children with disabilities, after a child was not allowed to play on a team in an organized league. ; Photo: Jenelle Schneider, Vancouver Sun / Braden Sabin plays soccer with the Blazin Soccer Pups in Vancouver. The Pups and the Dogs were organized last summer. ; Photo: Jenelle Schneider, Vancouver Sun / Coach Nish Lal helps as Lily Tan suits up to play with the Blazin Soccer Dogs. The Dogs and Pups are for children with disabilities. ;; Caption: -------------- next part -------------- An HTML attachment was scrubbed... URL: /pipermail/fasd_canadian_link/attachments/20090715/b3b03626/attachment-0001.html From rosse at ncf.ca Wed Jul 15 11:10:07 2009 From: rosse at ncf.ca (Elspeth Ross) Date: Wed Jul 15 15:16:25 2009 Subject: [Fasd_canadian_link] Scientists study ways to protect against fetal alcohol disorders Message-ID: <6.2.5.6.2.20090715111000.03760ad8@ncf.ca> http://www.usatoday.com/news/health/2009-06-22-pregnancy-alcohol_N.htm USA Today News - Health & Behavior Scientists study ways to protect against fetal alcohol disorders Updated 6/22/2009 7:57 PM [Photo] By Andy Rogers for USA TODAY A martini sits on a bar. About 12% of U.S. women drink at least some during pregnancy and 2% binge-drink. A CDC study last month concluded those numbers haven't substantially changed since 1991. WASHINGTON (AP) ? Drinking during pregnancy can seriously harm a baby's brain, yet thousands of mothers-to-be still do. Now scientists have begun testing whether a prenatal nutrient might offer those babies a little protection, part of a growing quest for ways to reverse the damage. The only help today: intense behavioral or educational therapies once children with fetal alcohol-caused disabilities reach preschool or school age, says new research by the Centers for Disease Control and Prevention. The agency is spending $1.5 million this year to start spreading those programs so more youngsters can find care. Better would be discovering a way to short-circuit what scientists now know is a complex chain reaction of toxicity that even moderate drinking during pregnancy ? and especially a binge ? can trigger in a baby's developing brain. Don't misunderstand: This is not a hunt for a pill to allow women to drink. Even if scientists eventually find a treatment, one medication could never cover all the ways that alcohol harms. "There's not going to be a single treatment that's going to be a panacea," cautions Dr. Jennifer Thomas of San Diego State University, whose animal research sparked interest in the nutrient choline, found in such foods as eggs and liver. But, "there's heightened interest now since despite our best efforts, we haven't eliminated drinking in pregnancy and haven't made a huge dent in it," adds Dr. Christina Chambers of the University of California, San Diego. She is overseeing the first clinical trial ? aiming to test 600 pregnant women in Ukraine ? to see if prenatal choline might help. About 12% of U.S. women drink at least some during pregnancy and 2% binge-drink. A CDC study last month concluded those numbers haven't substantially changed since 1991. With 4 million annual births, that adds up. Full-blown fetal alcohol syndrome ? a combination of brain, facial and growth abnormalities ? is considered a leading preventable cause of mental retardation. There isn't a good count, but the CDC estimates that anywhere from 1,000 to 6,000 U.S. babies a year are born with it. CDC says at least three times as many have less severe alcohol-related neurodevelopmental problems, such as learning disabilities and speech delays. In parts of the world like Ukraine, fetal alcohol syndrome is far more prevalent. Chambers stresses that no one thinks the mom who has a glass of wine the week before learning she's pregnant needs to worry. But because doctors don't yet know the safe limit, health officials say to abstain during pregnancy. How much damage alcohol causes depends on how much the mother consumes, and at what point in gestation. Nutrition plays a powerful role in proper development of the brain and nervous system: Getting enough folate during pregnancy, for example, can prevent spina bifida and related birth defects. And significant alcohol consumption interferes with mom's ability to absorb various nutrients, in turn affecting whether her fetus gets enough. So Thomas' group tested choline, a precursor to a brain chemical that plays a key role in learning. She exposed pregnant rats to alcohol during a third-trimester spurt of brain growth. Giving the mother rats extra choline ? or, importantly, giving newborn pups the nutrient ? significantly improved the pups' later ability to learn. On to humans: The study in Ukraine is recruiting women who acknowledge drinking while pregnant. They'll be counseled to stop, and then randomly assigned to take either a standard Ukrainian vitamin supplement every day, or that vitamin plus 750 milligrams of choline ? more than the 450 mg pregnant women are advised to get from food. About 120 women have been enrolled so far, and researchers expect preliminary results within a year. "Whether you'll be able to intervene when the woman's drinking is highly questionable," acknowledges Thomas, who says future work may need to examine newborn treatment. The choline pathway isn't the only possible target: ?Northwestern University researchers gave alcohol to rats in the equivalent of the second trimester and recorded a stunning alteration in the gene activity of their pups' brains ? an alteration that in turn led to markedly lower levels of thyroid hormones in brain regions that control learning, memory and emotional behaviors. Children with fetal alcohol disorders also display abnormalities in thyroid hormones, which play a role in brain development, lead researcher Laura Sittig told a recent meeting of the nation's endocrinologists. The question is whether thyroid hormones might offer a treatment. ?Australian researchers recently found dietary zinc played a role in protecting fetal mice exposed to alcohol even earlier in pregnancy. This is very early stage science. For already affected children, the CDC advises families to seek behavioral training specifically targeted to fetal alcohol disorders ? from the math trouble these youngsters frequently have to the common inability to learn through social experiences. Check CDC's website for a description of proven approaches. -------------- next part -------------- An HTML attachment was scrubbed... URL: /pipermail/fasd_canadian_link/attachments/20090715/652c7579/attachment-0001.html From rosse at ncf.ca Wed Jul 15 11:10:29 2009 From: rosse at ncf.ca (Elspeth Ross) Date: Wed Jul 15 15:16:27 2009 Subject: [Fasd_canadian_link] Forward, together : addressing FASD in Atlantic Canada Message-ID: <6.2.5.6.2.20090715111020.03760990@ncf.ca> Here is the report talked about in the email "PEI Hosting First Meeting of Atlantic Intergovernmental Fetal Alcohol Spectrum Disorder Partnership" Forward, together : addressing Fetal Alcohol Spectrum Disorder (FASD) in Atlantic Canada (link to PDF, 104 pages) FORWARD, TOGETHER: ADDRESSING FETAL ALCOHOL SPECTRUM DISORDER (FASD) IN ATLANTIC CANADA Gary Roberts and Associates Prepared for Public Health Agency of Canada, Atlantic Region and Health Canada, First Nations and Inuit Health, Atlantic Region December 2008 -------------- next part -------------- An HTML attachment was scrubbed... URL: /pipermail/fasd_canadian_link/attachments/20090715/fb0ed517/attachment.html From rosse at ncf.ca Wed Jul 15 11:10:52 2009 From: rosse at ncf.ca (Elspeth Ross) Date: Wed Jul 15 15:16:29 2009 Subject: [Fasd_canadian_link] Ont. Province provides relief, support for familites affected by FASD: North Bay Message-ID: <6.2.5.6.2.20090715111043.03760700@ncf.ca> http://www.nugget.ca/ArticleDisplay.aspx?e=1621372 North Bay Nugget Local press releases Province provides relief, support for familites affected by fetal alcohol disorder Posted By Press release from Nipissing MPP Monique Smith Posted 25 days ago [as of July 15, 2009] MPP Celebrates Trillium Funding with Community Counselling Centre of Nipissing [Photo] Nipissing MPP Monique Smith handed over a Trillium Foundation grant to the Community Counselling Centre of Nipissing. From left, FASD co-ordinator Elaine Cousineau, board chairman Derek Thompson and executive director Alan McQuarrie. Photo courtesy of Monique Smith's office North Bay ? The Community Counselling Centre launched a new, two year program today, thanks to a $120,800 grant from the Ontario Trillium Foundation (OTF). The Honourable Monique Smith, MPP for Nipissing congratulated the agency at the christening ceremony. ?Fetal Alcohol Spectrum Disorder is a serious issue,? said Nipissing MPP Monique Smith. ?I want to congratulate The Community Counselling Centre of Nipissing for their commitment to raising awareness and providing education about FASD, with the help this very significant OTF funding.? Established in 1973, the Community Counselling Centre provides counselling and advocacy services to over 3,000 people a year in the Nipissing District. It offers services such as Credit Counselling, Sexual Assault and Addictions Counselling, support for people with developmental disabilities and Violence against Women counselling. ?We?ve used this grant to hire a coordinator, Elaine Cousineau, to promote awareness of the devastating affects of alcohol consumption during pregnancy? says Alan McQuarrie, Executive Director of the Counselling Center. ?Awareness is the best weapon in our battle against this devastating life long disorder. Over the two years of this project, we will be bringing together individuals and community partners to develop a coordinated approach to support families.? The Ontario Trillium Foundation is an agency of the Government of Ontario. For 25 years, we have supported the growth and vitality of communities across the province. OTF continues to strengthen the capacity of the volunteer sector through investments in community-based initiatives. For more information, please visit www.trilliumfoundation.org. -------------- next part -------------- An HTML attachment was scrubbed... URL: /pipermail/fasd_canadian_link/attachments/20090715/f6ea02e4/attachment.html From rosse at ncf.ca Wed Jul 15 11:11:04 2009 From: rosse at ncf.ca (Elspeth Ross) Date: Wed Jul 15 15:16:31 2009 Subject: [Fasd_canadian_link] Tackling FASD head on in Nipissing Message-ID: <6.2.5.6.2.20090715110241.03bfcc68@ncf.ca> http://www.baytoday.ca/content/news/details.asp?c=32049 Tackling FASD head on in Nipissing By Kate Adams BayToday.ca Friday, June 19, 2009 [Photos and 2 YouTube items Click on the article and you can see & hear MPP Monique Parsons and Elaine Cousineau talking] It was a good news announcement at the Community Counselling Centre Friday as the team announced the launch of a new two year program to address Fetal Alcohol Spectrum Disorder. The announcement was made possible thanks to a $120,800 grant from the Ontario Trillium Foundation (OTF). Nipissing MPP Monique Smith, who was on hand to make the announcement, shared the story of her friend Ernie Parsons, retired MPP for Prince Edward-Hastings whose son died in his twenties from the disorder stating Fetal Alcohol Spectrum Disorder is a serious issue. ???I want to congratulate The Community Counselling Centre of Nipissing for their commitment to raising awareness and providing education about FASD, with the help this very significant OTF funding.??? Program coordinator Elaine Cousineau is anxious to get to work promoting awareness about FASD and the fact that there are no safe levels of alcohol consumption during pregnancy. Stressing the importance of understanding what the effects can be she tells the group assembled for the announcement that FASD is disability not developmental delay ? she stresses it is permanent irreversible brain daamage caused by the use of alcohol before the baby is born. Alan McQuarrie, Executive Director of the Counselling Center knowledge is power and that with the information available now about FASD they can eliminate the disorder in the very near future. The Community Counselling Centre provides counselling and advocacy services to over 3,000 people a year in the Nipissing District. Established in 1973 the CCC also offers services such as Credit Counselling, Sexual Assault and Addictions Counselling, support for people with developmental disabilities and Violence against Women counselling. -------------- next part -------------- An HTML attachment was scrubbed... URL: /pipermail/fasd_canadian_link/attachments/20090715/7d853664/attachment.html From rosse at ncf.ca Wed Jul 15 12:56:47 2009 From: rosse at ncf.ca (Elspeth Ross) Date: Wed Jul 15 19:40:14 2009 Subject: [Fasd_canadian_link] Pioneering court offers hope to addict mothers: U.K. Message-ID: <6.2.5.6.2.20090715125637.037ff8a0@ncf.ca> Skipped content of type multipart/related-------------- next part -------------- From rosse at ncf.ca Thu Jul 16 13:02:53 2009 From: rosse at ncf.ca (Elspeth Ross) Date: Thu Jul 16 17:09:11 2009 Subject: [Fasd_canadian_link] First Nations youth focus of new committee: New Brunswick Message-ID: <6.2.5.6.2.20090716125857.03440688@ncf.ca> "...When it comes to statistics on child poverty, fetal alcohol syndrome, addictions and criminality, the proportions in native communities are six to 10 times what they are for the non-native communities in New Brunswick..." http://dailygleaner.canadaeast.com/cityregion/article/730493 The Daily Gleaner First Nations youth focus of new committee Published Thursday July 16th, 2009 Child welfare | Provincial court judge and former MP to head up team By SHAWN BERRY berry.shawn@dailygleaner.com Two Fredericton men have been tapped to co-chair a committee to highlight the state of First Nations child welfare in New Brunswick and to find workable solutions. Former Fredericton MP and federal Indian affairs minister Andy Scott and provincial court Judge Graydon Nicholas helm the First Nations Child Welfare Review Advisory Committee and Project Team created by provincial ombudsman Bernard Richard. The 11-member committee is comprised primarily of native elders and social workers. It will study the situations of First Nations children in New Brunswick and recommend improved child-welfare services to benefit them. The committee was created following a review of the suicide of a 13-year-old girl who was under the care of a First Nations child and family services agency. "The problems are enormous. If we can find a solution, that's a big step," Richard said. "We need to find better solutions because obviously what we have now is not working." When it comes to statistics on child poverty, fetal alcohol syndrome, addictions and criminality, the proportions in native communities are six to 10 times what they are for the non-native communities in New Brunswick, Richard said. The United Nations Committee on the Rights of the Child and UNICEF have given Canada poor marks in that area. After meetings today, Richard will have met with leaders from all 15 of New Brunswick's first nations about the initiative. He said the group plans to begin speaking with First Nations communities - particularly the youth, the elders, councils and the people who deliver social services - next month and have the report ready in the beginning of next year. Experts and researchers will be invited to address the issues at a symposium in September. More than 8,400 people live on New Brunswick's reserves. Another 4,600 band members live off reserve. "The main goal is to find a consensus between the provincial government, the federal government and 15 First Nations governments on the best way to prevent the social problems that children on First Nations face in New Brunswick. And to develop a model to deliver that service," Richard said, speaking in French. "The idea is to recommend a made-in-New Brunswick model for child-welfare services on First Nations." Richard said the issues are broad reaching and could impact all First Nations people in the province. And while other committees and working groups have made their own recommendations in the past, he hopes to have a real impact. "I think we have to hope things will change," he said. He said it's important to look at the level of responsibility of all three levels of government in native communities. "The federal is responsible for the funding, the province is responsible for delivery, and the First Nations are delivering the services on the ground," Richard said. He said that his office is poised to offer an independent opinion and incisive recommendations. "We're independent from all of those governments. I think we have a proven track record ... We don't hesitate to tell it like it is and provide directions for change," he said. Scott and Nicholas couldn't be reached for comment. -------------- next part -------------- An HTML attachment was scrubbed... URL: /pipermail/fasd_canadian_link/attachments/20090716/73eedb2c/attachment.html From rosse at ncf.ca Thu Jul 16 13:26:47 2009 From: rosse at ncf.ca (Elspeth Ross) Date: Thu Jul 16 17:33:10 2009 Subject: [Fasd_canadian_link] Sask. FASD Conference Sept. 24-25, 2009 Message-ID: <6.2.5.6.2.20090716131343.039447b8@ncf.ca> Skipped content of type multipart/alternative-------------- next part -------------- A non-text attachment was scrubbed... Name: 2009 FASD Conference Registration.pdf Type: application/pdf Size: 322807 bytes Desc: not available Url : /pipermail/fasd_canadian_link/attachments/20090716/99f79b9d/2009FASDConferenceRegistration-0001.pdf -------------- next part -------------- From rosse at ncf.ca Thu Jul 16 13:27:17 2009 From: rosse at ncf.ca (Elspeth Ross) Date: Thu Jul 16 17:33:13 2009 Subject: [Fasd_canadian_link] Are you the birth mother of a child with FASD? Saskatchewan Message-ID: <6.2.5.6.2.20090716132709.03b14098@ncf.ca> Recruitment letter sent out in email from Beverly Palibroda - FASD Support Network of Saskatchewan July 15, 2009 University of Saskatchewan Are you the birth mother of a child with FASD? Would you like to have a place to share your experiences and story in a private and safe setting? If so, you are invited to participate in our upcoming research study. Under the supervision of Dr. Laurie Hellsten, I am a Master's of School and Counselling Psychology student at the University of Saskatchewan. I am exploring the experiences of birth mothers of children with FASD since the birth of their child. I am seeking volunteers to participate in this research study and share their experiences. Participation in this study requires: a) Two separate 1-2 hour interviews in a private setting regarding your experiences, emotions and ideas about being a birth mother of a child with FASD. b) A third 1-2 hour long interview in which you and the researcher discuss the common experiences of birth mothers of children with FASD. c) Reviewing the interview transcripts to ensure your experiences were correctly recorded and interpreted. To participate in this study you must: a) Be a birth mother of a child or children diagnosed with FASD b) Living in Saskatoon and area c) Be 18 years of age or older d) Be currently involved in the parenting of the child with FASD e) Be willing and able to tell your story If you are interested in learning more about this study, please contact Megan Wood at 717-0936 or mew345@mail.usask.ca and more details will be provided -------------- next part -------------- An HTML attachment was scrubbed... URL: /pipermail/fasd_canadian_link/attachments/20090716/b7f91f65/attachment.html From rosse at ncf.ca Thu Jul 16 13:32:32 2009 From: rosse at ncf.ca (Elspeth Ross) Date: Thu Jul 16 17:39:09 2009 Subject: [Fasd_canadian_link] Ontario Releases Mental Health And Addictions Discussion Paper Message-ID: <6.2.5.6.2.20090716133219.0325f2f0@ncf.ca> http://www.news.ontario.ca/mohltc/en/2009/07/ontario-releases-mental-health-and-addictions-discussion-paper.html Ontario Ontario Releases Mental Health And Addictions Discussion Paper July 14, 2009 8:45 AM McGuinty Government Launches Consultation At Mental Health And Addictions Strategy Summit "This provincial summit will not only help to raise the profile of mental health and addictions, but also the feedback taken from it and other consultations will shape our final strategy. " ? David Caplan Minister of Health and Long-Term Care Ontario has released a discussion paper, Every Door is the Right Door to contribute to the development of a 10-year mental health and addictions strategy. The paper was released at the Open Minds. Healthy Minds Summit co-hosted by Minister David Caplan and his Advisory Group on Mental Health and Addictions. The provincial summit is an opportunity for approximately 1,000 consumers and experts from across Ontario to contribute ideas towards the development of Ontario's Mental Health and Addictions Strategy. Further consultations and round tables on the discussion paper will be held across Ontario in the fall. The advisory group will report to the Minister in winter 2009/10. QUICK FACTS Ontario has more than 300 community-based mental health programs offering a range of services and supports that provide alternatives to inpatient services, reduce admissions at psychiatric facilities and support people right in the communities. Ontario funds 150 substance abuse treatment programs and provincial initiatives including withdrawal management, community counselling, residential treatment and support services. One in every five Ontarians will experience a serious mental health illness or harmful substance use. LEARN MORE Read the Advisory Group's discussion paper at www.health.gov.on.ca/mha-feedback Find out more about the Select Committee on Mental Health and Addictions Learn more about treatment for Mental Health and Addictions in Ontario Mental Health And Addictions CONTACTS David Jensen Communications Branch 416-314-6197 media@nullmoh.gov.on.ca Media Line Toll-free: 1-888-414-4774 GTA: 416-314-6197 media@nullmoh.gov.on.ca For public inquiries call ServiceOntario, INFOline 1-866-532-3161 null(Toll-free in Ontario only) Steve Erwin Minister's Office 416-326-3986 media@nullmoh.gov.on.ca "This provincial summit will not only help to raise the profile of mental health and addictions, but also the feedback taken from it and other consultations will shape our final strategy. " ? David Caplan Minister of Health and Long-Term Care -------------- next part -------------- An HTML attachment was scrubbed... URL: /pipermail/fasd_canadian_link/attachments/20090716/fe7fc044/attachment-0001.html From rosse at ncf.ca Thu Jul 16 13:32:52 2009 From: rosse at ncf.ca (Elspeth Ross) Date: Thu Jul 16 17:39:11 2009 Subject: [Fasd_canadian_link] Ont. Every door is the right door. Towards a 10-Year Mental Health and Addictions Strategy Message-ID: <6.2.5.6.2.20090716133240.0395b630@ncf.ca> [No mention of FASD, FASD, or fetal alcohol in this report. Pregnancy mentioned in passing] Every door is the right door. Towards a 10-Year Mental Health and Addictions Strategy: a discussion paper (link to PDF, 53 pages) Ministries Involved in the Mental Health and Addictions Strategy ? Aboriginal Affairs ? Attorney General ? Children and Youth Services ? Citizenship and Immigration ? Community and Social Services ? Community Safety and Correctional Services ? Culture ? Education ? Finance ? Health and Long-Term Care ? Health Promotion ? Labour ? Municipal Affairs ? Training, Colleges and Universities Executive Summary Opening Doors for People with Mental Illnesses and Addictions For too many years, people with mental illnesses and/or addictions have been marginalized and stigmatized. Mental health and addiction services have been the distant cousins of the health care system: planned and managed separately from other health services. But there is no health without mental health. This proposed approach aims to integrate people with mental illnesses and/or addictions into their communities and to integrate mental health and addiction services with the rest of the health system ? to make every door the right door for people with mental illnesses and/or addictions. Our vision is that every Ontarian enjoys good health and well-being, and Ontarians with mild to complex mental illness and/or addiction live and participate in welcoming, supportive communities. Our goals are clear: ? Improve health and well-being for all Ontarians ? Reduce incidence of mental illness and addiction ? Identify mental illnesses and addictions early and intervene appropriately ? Provide high quality, effective, integrated, culturally competent, person-directed services and supports for Ontarians with mild to complex mental illnesses and/or addictions. Our proposed approach is guided by principles of respect for people with mental illnesses and/or addictions and their diverse strengths and needs. It is also based on the strong belief that people with lived experience must be active partners in their own recovery, and that all service providers have a responsibility to collaborate to provide seamless care. We believe that everyone in Ontario with mental illness or an addiction should be hopeful about their future because services can be evidence-based, strengths-based and provide opportunities for healthy development and recovery. The system should make every effort to reduce the health, economic and social harms associated with mental illnesses, problematic substance use and harmful gambling. It can be innovative, and work to reduce or eliminate the underlying social factors that contribute to mental illness and addiction. page 13 I. Mental Illnesses and Addictions Touch Many Lives Mental illnesses and addictions include but are not limited to: ? psychotic disorders ? substance abuse and addictions, including problem gambling ? mood and anxiety disorders ? personality disorders ? eating disorders ? attention deficit hyperactivity disorder ? conduct disorder ? dementias -------------- next part -------------- An HTML attachment was scrubbed... URL: /pipermail/fasd_canadian_link/attachments/20090716/7688f800/attachment-0001.html From rosse at ncf.ca Thu Jul 16 13:33:25 2009 From: rosse at ncf.ca (Elspeth Ross) Date: Thu Jul 16 17:39:14 2009 Subject: [Fasd_canadian_link] Ont. Select Committee on Mental Health and Addictions hearings Message-ID: <6.2.5.6.2.20090716133308.0395b258@ncf.ca> http://www.cnw.ca/en/releases/archive/July2009/08/c4634.html?view=print CNW Telbec [Legislative Assembly of Ontario] Select Committee on Mental Health and Addictions TORONTO, July 8 /CNW/ - The Select Committee on Mental Health and Addictions will meet to consider recommendations with respect to developing a comprehensive Ontario mental health and addictions strategy. The Committee intends to hold public hearings in Thunder Bay, Sudbury, North Bay and Ottawa in September 2009 and in Toronto in the fall of 2009. Interested people who wish to be considered to make an oral presentation to the Committee should contact the Committee Clerk by 12:00 noon on Monday, August 10, 2009. Those who do not wish to make an oral presentation but wish to comment may send written submissions to the Committee Clerk at the address below. Kevin Daniel Flynn, MPP Chair/Pr?sident Collect calls will be accepted. Ces renseignements sont disponibles en fran?ais sur demande. For further information: Susan Sourial, Clerk, Room 1405, Whitney Block, Queen's Park, Toronto, ON, M7A 1A2, Telephone: (416) 325-7352, Facsimile: (416) 325-3505, TTY: (416) 325-3538 -------------- next part -------------- An HTML attachment was scrubbed... URL: /pipermail/fasd_canadian_link/attachments/20090716/a3ed9db4/attachment-0001.html From rosse at ncf.ca Thu Jul 16 13:37:08 2009 From: rosse at ncf.ca (Elspeth Ross) Date: Thu Jul 16 17:39:16 2009 Subject: [Fasd_canadian_link] Mental-health advocates hail $5-million Thomson donation Message-ID: <6.2.5.6.2.20090716133700.0395b110@ncf.ca> www.theglobeandmail.com Globe & Mail Toronto Mental-health advocates hail $5-million Thomson donation Gift will fund new CAMH facility to help youth who suffer from addictions and mental illnesses Jill Colvin Toronto ? From Monday's Globe and Mail Last updated on Monday, Jun. 29, 2009 12:12PM EDT One of Canada's most prominent families has pledged $5-million to build the country's first inpatient centre to treat youth with co-occurring mental illness and substance-abuse disorders. The donation from the estates of Ken Thomson and his sister Audrey Campbell to the Centre for Addiction and Mental Health will fund a 9,000-square-foot facility that will be the only of its kind in the country. "We're all tremendously grateful," said CAMH Foundation president Darrell Gregersen. "Just a few years ago no one would dream of making a $5-million gift to a mental-health institution in Canada." At the moment, young people with both serious substance abuse and mental-health problems have no place to go for treatment, said Dr. David Goldbloom, senior medical adviser at CAMH. Many bounce back and forth from one specialist to another, or are excluded from mental-health care because of their addictions. But research shows that mental illness and substance abuse often go hand-in-hand, with one triggering the other. Approximately 1.2 million Canadian children - one in seven - has a mental illness at any time, and half of those have a serious drug or alcohol problem. "It's two sides of the same coin," Ms. Gregersen said. The new centre, slated to open in 2012, will house 12 inpatient beds and offer 24-hour support to approximately 220 to 250 adolescents each year, Dr. Goldbloom said. Patients will also have access to the hospital's expanded Child, Youth and Family Program's services, including individual and group therapy, school programs, and other classes. The new facility is part of a $100-million redevelopment project aiming to modernize CAMH, Canada's largest mental-health and addiction hospital, and better integrate the 27-acre complex with its surrounding community. Once completed, it will include parks, shops, art galleries and a performance centre, in addition to new treatment and research facilities. The Thomson gift, the project's fifth $5-million donation, brings the total raised for redevelopment to $74-million - the largest amount ever raised to fund mental-illness and substance-abuse care in the country, CAMH said. Staffers say this total signals an important shift in the perception of mental illness, with more people willing to talk about the problem and acknowledge its toll. "When Canadians such as this family come forward, not only to support these initiatives, but support them in a public way, it sends a very powerful message," Dr. Goldbloom said. He said he hopes gifts like these will also help to legitimize the experiences of people coping with mental illness and addiction, who say the stigma associated with their disorders can make recovery even harder. "There's a lot of blame and shame that goes along with having these issues," said Clara Locey, a former client at CAMH who has shared her experiences with tens of thousands of young people across the GTA. Ms. Locey was 16 when she dropped out of school and got involved in a world of constant partying, raves and pills. "I was just cramming as many drugs into my body as I could," she said. Ms. Locey hit rock bottom when she accompanied three men she'd never met to a downtown hotel room after they had promised to get her high. They did, and then proceeded to rape her, again and again. It was the wake-up call she needed to seek treatment, she said. "If it weren't for CAMH, I wouldn't be here today," she said. Ms. Locey, now 24, said many still think those with mental illness or addiction problems "are not worth helping," and should be in jail instead of treatment "because it's their fault." She said she hoped the donation and CAMH expansion would help more people in her position get the help they need. -------------- next part -------------- An HTML attachment was scrubbed... URL: /pipermail/fasd_canadian_link/attachments/20090716/559c8fc9/attachment-0001.html From rosse at ncf.ca Thu Jul 16 13:37:30 2009 From: rosse at ncf.ca (Elspeth Ross) Date: Thu Jul 16 17:39:19 2009 Subject: [Fasd_canadian_link] Pioneering court offers hope to addict mothers: U.K. Message-ID: <6.2.5.6.2.20090716133718.0395ab68@ncf.ca> Skipped content of type multipart/related-------------- next part -------------- From rosse at ncf.ca Fri Jul 17 12:07:13 2009 From: rosse at ncf.ca (Elspeth Ross) Date: Fri Jul 17 16:10:20 2009 Subject: [Fasd_canadian_link] Ont. Select Committee on Mental Health and Addictions hearings so far: FASD 4 mentions Message-ID: <6.2.5.6.2.20090717120540.045a6500@ncf.ca> The Ontario Select Committee on Mental Health and Addictions will be holding hearings in Thunder Bay, Sudbury, North Bay and Ottawa in September 2009 and in Toronto in the fall of 2009. Take a look at the transcripts on the website (below) and see what has been presented so far on FASD. NOT MUCH. I checked the website below and found that the committee has already had 10 hearings from April 8 - June 18, most in Toronto, Windsor on June 15, St. Thomas on June 16, Hamilton on June 17 & Kingston on June 18. I continued to checking to see if anyone had given a real presentation on FASD & Mental Health & Addictions with recommendations. The answer in NO. It has been mentioned four times only. http://www.ontla.on.ca/web/committee-proceedings/committee_transcripts_current.do?locale=en Legislative Assembly of Ontario - Committees - Committee Transcripts: Current Parliament Transcripts: Select Committee on Mental Health and Addictions I checked to see if FASD has been discussed and found the following: April 22 in Toronto - Curt Flanagan, Ministry of Attorney General, Director of Mental Health, criminal law aboriginal community justice programs division mentioned it in passing - "an aboriginal community justice program in Mohawk Council has direct access to fetal alcohol spectrum disorder assessments and diagnoses within their territory. They are valuable because they specialize." May 6 in Toronto - Ms Lori Sterling, deputy minister at Ministry of Aboriginal Affairs "Some statistics related to mental health amongst the aboriginal population. We've got suicide, depression, emotional disorders and FASD, fetal alcohol syndrome.... "The other social indicator I just wanted to mention is addictions and the related fetal alcohol spectrum disorder, which of course also has implications for their graduation rates....." June 16 in St. Thomas - Ms Tracy Grant, one of three for Thames Valley District School Board Mental Health & Wellness Committee BEST PRESENTER ON FASD "...parent, foster parent, adoptive mom, service provider, school volunteer, and trustee on SEAC, as well as our mental health and wellness committee..." "...The school-as-hub model has been suggested in many government documents. In order to better serve children in our communities, there is a huge agreement with the view that earlier diagnosis and treatment is beneficial to our vulnerable children and youth. In fact, there are several studies showing that for many disorders, later diagnosis or an inappropriate placement or treatment plan can exacerbate their condition and lead to co-occurring conditions.... "...Additionally, the Southwest Ontario Aboriginal Health Access Centre has been attempting to bring a fetal alcohol spectrum disorder diagnostic clinic to the area in order to better identify that neurodevelopmental disorder. FASD affects at least 1% of the general population, and secondary mental health conditions occur in over 90% of affected individuals. It is extremely difficult to access assessment and service locally. The board has recently facilitated a cross-sector networking group for FASD, but provincial support and direction is urgently needed to catch up with supports and services available in other jurisdictions. If improved health and mental health screening and assessments were available on-site, earlier identification and provision of appropriate services would prevent many maladaptive behaviours and secondary conditions and improve outcomes for children suffering from untreated mental health conditions. When you look at the characteristics of various mental health conditions-and you've got that sheet as well-it is obvious that the children will have difficulty in a school environment if not appropriately assessed and treated. The school-as-hub model would significantly improve assessment and treatment opportunities and hopefully reduce disrupted school experiences with a view to improving life outcomes for all students..." June 17 in Hamilton - Beverly McIntosh, one of three for ROCK Canada, Raising our Children's Kids grandmother of two fetal alcohol children - Rosina was nine months old when I got her - ....She's 10.... only 42 pounds.....She has the features and is very developmentally delayed..... Austin "...He was born and taken to McMaster to have his hair tested, and he had alcohol in his hair follicles, although the mother, to this day, says that she didn't drink. He doesn't have the full one; he has the behaviours, and he can't control his behaviours either. So when the two of them get together, it's like a fighting match in a ring sometimes, and I have to get in between and separate them...." Ms. Diane Chiarelli: Good morning. Our organization, ROCK, recognizes the huge impact that mental illness and drug and alcohol addiction have on our community. ...we must make a concentrated commitment at all levels of government to support and create new programs and continue funding good programs to help these suffering individuals......." From Elspeth -------------- next part -------------- An HTML attachment was scrubbed... URL: /pipermail/fasd_canadian_link/attachments/20090717/b5b64c4f/attachment.html From rosse at ncf.ca Sat Jul 18 08:58:48 2009 From: rosse at ncf.ca (Elspeth Ross) Date: Sat Jul 18 10:46:13 2009 Subject: [Fasd_canadian_link] Health care's missing care Message-ID: <6.2.5.6.2.20090718075827.03af8c48@ncf.ca> [The sentiments here also apply to us who live & work in FASD. Doctors can't know what it is like to live with the effects of fetal alcohol, but they should be able to acknowledge the difficulties we face and do some caregiving. This is hard with an invisible disability, as ARND is.] "...caregiving begins with the clinical ethical act of acknowledging the situation of the sufferer, affirming his or her efforts and those of family and friends to respond to pain and impairment, and demonstrating emotional and moral solidarity with those efforts...." "...we must incorporate the humanities into medical training..." www.theglobeandmail.com Globe & Mail Opinions The Globe Essay Health care's missing care Arthur Kleinman From Saturday's Globe and Mail Last updated on Friday, Jul. 17, 2009 02:25AM EDT [Illustration] Caregiving is a lost art, says Arthur Kleinman ?let's restore humanities to the same level as diagnosis and treatment Caregiving is understood by economists as a ?burden,? by clinical psychologists as a ?coping process,? by health-services researchers in terms of health-care costs, and by physicians as a matter of clinical competency. But, for many people, caregiving is a foundational component of moral experience. It is a practice of acknowledgment, empathic imagination, witnessing, responsibility, solidarity and the most concrete forms of assistance. It is this moral aspect that makes caregivers, and at times even care-receivers, feel more ?present? ? and thus more fully human. But, aside from skilled nursing, rehabilitation efforts by occupational and physical therapists, and the practical assistance of social workers and home health aides, caregiving, especially for victims of health catastrophes and end-stage conditions, has relatively little to do with the contemporary practice of medicine. To illustrate this point, I draw on my personal experience as the caregiver for my wife, Joan Kleinman, who suffers from a severe neurodegenerative disorder that has impaired her memory and motor functions, restricting her independence. I wake her up in the morning, assist her in toileting, bathing and dressing, make us breakfast and help her feed herself. I assist her in walking, placing her in a chair and getting into our car. I am with her nearly all the time to protect her from injuring herself, because she can neither see nor navigate safely on the street or in our own home. I read the newspaper and books to her, explain stories on the TV and select music for her to listen to, and make telephone calls for her to our children and grandchildren. I prepare lunch and dinner and help her eat; and I do all the things required to get her ready to go to bed at night. Of course, our children, my mother, my brother and others call and help when they can, and several times a week we are assisted by a professional home health-care helper who does the washing, cooks several meals and spends the daytime hours with her. Joan herself does as much as she is able to do. She rarely complains and, except for an occasional agitation that is beyond her control, she struggles to enjoy life and usually succeeds in doing so. In this and several even more crucial ways she is her own caregiver. She keeps up her part in our conversations, emotional exchanges and moral relationship. It is disturbing to witness the deterioration of a once elegant, intellectually lively and highly independent companion of more than four decades. But our emotional reactions, from frustration and anger to sadness, have been cushioned and sublimated by our work, the long rhythm of our days together and, above all, the support of family and close friends. That concern and responsibility for us are as much a part of caregiving as all the mundane practices I have listed, and amount to moral solidarity with our struggle. I give this personal sketch because it is the best I can do to illustrate what caregiving entails, and why it is so crucial to everyone's life ? and to the human condition more generally. Caregiving, as illustrated by our case, includes what happens when hope and consolation are abandoned, when theodicy ends and when all there is to do is to be present with the sufferer, sharing his or her suffering by simply ? and usually silently ? being there. THEORY AND REALITY What is the status of caregiving for health catastrophes and other serious conditions in medicine today? While medical educators say it is still central to what it means to be a physician and point to courses and practitioners who teach the art of caregiving to students, the on-the-ground reality is much more uncertain and fragile. Most physicians, apart from primary-care providers, do little in the way of hands-on caregiving. Hospice doctors are caregivers; physicians who routinely deal with the end of life, such as oncologists and cardiologists and nephrologists and gerontologists, are surrounded by caregiving opportunities, yet few take part in its nitty-gritty ? leaving the practical assistance and emotional tasks to nurses, social workers and the patient and his or her network of support. In medical school, the curriculum in both basic science and the clinical-apprenticeship years places the greatest emphasis on understanding disease processes and high-technology treatments. The illness experience gets less and less pedagogic attention, as the student progresses from classroom to inpatient ward and clinic. In the broader system of health care, students can all too readily discern that medicine largely leaves caregiving to others. Those others include nurses, whose professional science has made caregiving a central element of knowledge production and training. This knowledge is largely unavailable to young physicians and medical students. Its association with a lower-status profession may even confer upon it something of a stigmatized status. Notably, caregiving still has a strong gender bias; most caregivers are women. Historically and cross-culturally, this is even more impressively true. What is particularly true of our time and especially in my own society is that the structure of service delivery and the funding of health services work to discourage professionals from the art of caregiving and can in fact undermine the practitioner's efforts. Part of the mistrust of doctors is the growing sense that they seem uninterested in caregiving. The late, great physician-educator Walsh McDermott of Cornell University once proposed that the caregiving and technological roles of the doctor might be separated, and the former dropped from medicine as a burdensome and poorly cultivated anachronism ? probably saying this tongue-in-cheek to stimulate discussion of how to strengthen caregiving in the curriculum. If we honestly look at today's medicine, we must come away with an accumulating sense that caregiving is at best inadequately taught and supported among students and physicians, and at worst is a hollow skill that has been emptied of content, commitment and competence. It is a vestigial component of medical training and practice, which occupies a position in the profession as marginal as clinical experience has in the age of ?evidence-based? practice. Physicians should ask themselves what serious effort has been made in determining and operationalizing the knowledge needed to provide good care? What time has been allotted for acquiring this skill in medical school and residency training? For example, do students get placed in the homes of victims of health catastrophes, so that they actually experience caregiving? What has been done to evaluate future doctors' skills in this respect? How often is assessment of caregiving skills taken as seriously as assessment of basic science and clinical knowledge? Has medicine turned its back on the medical art and the thousands of years of humanistic approaches to medical practice? The current state of affairs is a moral impoverishment of the practice of medicine. For medical anthropologists, people everywhere live in the flow of interpersonal interactions in local worlds ? social networks, families, institutions and communities. That is to say, experience, viewed as the flow of words, movements and emotions among us, is not only local, but also inherently moral, because living our lives is about animating and enacting values. For patients and families faced with health catastrophes and serious chronic medical conditions, the experience of suffering is not just a personal one, but is strongly influenced by cultural and historical changes in the processes that contribute to moral life being distinctive in different eras and societies. Faced with a threat of pain, disfigurement, loss of function and serious disability, individuals and families reframe the experience of suffering within their local moral world by remaking meanings, emotions and values via ethical, religious and aesthetic activities. WHERE CAREGIVING BEGINS What is caregiving for physicians and what is the knowledge base from which it is to be practised and taught? Boiling down a variety of studies of the frail elderly, dementia and terminal conditions, for example, we can say that caregiving begins with the clinical ethical act of acknowledging the situation of the sufferer, affirming his or her efforts and those of family and friends to respond to pain and impairment, and demonstrating emotional and moral solidarity with those efforts. It moves on to involve the physician in pain management, symptom relief, treatment of other ?intercurrent? diseases (such as depressive disorder) that may arise during the first disease, and judicious management of the use of pertinent technology and control of unnecessary or futile interventions. It includes working within a network of advisers (legal, financial, religious), other health professionals (such as physical therapists, occupational therapists, nurses, social workers and home health-care assistants), and family and network caregivers. It often involves advising on appropriate use of hospital and home health-care technology. And it means spending real time with patients, empathically listening to their illness narratives, eliciting and responding to their explanatory models, and engaging the psychosocial coping processes involved in enduring or ending life. Managing the process of dying and being a presence at death and assisting, insofar as it is wanted, with bereavement are also part of caregiving. These involve moral, affective and meaning-making activities that we have learned much more about in recent years. Included here too is self-management of the physician's own emotional and moral responses, which may at times require attention to his or her own ethical, religious and aesthetic needs. Doctors are no different from laypersons in drawing on personal and cultural resources ? involving imagination, responsibility, sensibility, insight and communication ? to accomplish their caregiving. And what they engage in is an amalgam of ethical, aesthetic, religious and practical action. The physician's art ? now so circumscribed by bureaucratic, political and economic forces ? turns on both the professionalization of these inherently human resources and the impact of their routine use on the doctor's own moral life. ENABLING THE PHYSICIAN To prepare for a career of caregiving, medical students and young doctors clearly require something besides scientific and technological training. Indeed, current professional education can even be seen as enabling the physician as a technical expert, while disabling him or her as a caregiver. To overcome this trend, we must incorporate the humanities into medical training as a means of rekindling and deepening those human experiences of imagination and commitment that are essential for caregiving, and resisting the bureaucratization of values and emotional responses that causes failure in the physician's art. In essence, the practitioner must come to feel that the art of caregiving is as much at stake as the science and technology of diagnosis and treatment. In my view, what is needed is reform of the very culture of contemporary biomedicine. We must train students and practitioners in critical self-reflection on that which limits their caregiving; in strategies and techniques aimed at opening a space for the moral acts of caregiving; and in the most concrete and practical acts of assistance, so that they never forget what caregiving actually means. Arthur Kleinman is professor of medical anthropology at Harvard University and author of What Really Matters: Living a Moral Life Amidst Uncertainty. -------------- next part -------------- An HTML attachment was scrubbed... URL: /pipermail/fasd_canadian_link/attachments/20090718/0e1d0071/attachment-0001.html From rosse at ncf.ca Sat Jul 18 20:21:24 2009 From: rosse at ncf.ca (Elspeth Ross) Date: Sat Jul 18 19:28:12 2009 Subject: [Fasd_canadian_link] Children with FASD have more severe behavioral problems than children with ADHD Message-ID: <6.2.5.6.2.20090718144138.03741e08@ncf.ca> http://www.eurekalert.org/pub_releases/2009-07/ace-cwf071009.php Public release date: 16-Jul-2009 Contact: Joanne Rovet, Ph.D. joanne.rovet@sickkids.ca 416-813-8283 The Hospital for Sick Children Rachel Greenbaum, Ph.D. rachel.greenbaum@surreyplace.on.ca 416-925-5141 x2364 Surrey Place Centre Piyadasa W. Kodituwakku, Ph.D. pkodituwakku@salud.unm.edu 505-272-1861 University of New Mexico School of Medicine Alcoholism: Clinical & Experimental Research Children with FASD have more severe behavioral problems than children with ADHD Fetal alcohol spectrum disorders, attention deficit hyperactivity disorder Children with fetal alcohol spectrum disorders (FASD) have a high risk of psychiatric problems, including attention deficit hyperactivity disorder (ADHD). Children with FASD are often initially diagnosed with ADHD. A first-of-its-kind study shows that children with FASD have a distinct behavioural profile: significantly weaker social cognition and facial emotion-processing abilities than children with ADHD. Children with fetal alcohol spectrum disorders (FASD) have a high risk of psychiatric problems, particularly attention deficit hyperactivity disorder (ADHD), conduct disorder, or both. Often children with FASD are initially diagnosed with ADHD. A new study is the first to examine a range of cognitive factors and social behavior in children with FASD and ADHD, finding that those with FASD have significantly weaker social cognition and facial emotion-processing abilities. Results will be published in the October issue of Alcoholism: Clinical & Experimental Research and are currently available at Early View. "Behaviorally, FASD and ADHD can look quite similar, particularly with respect to problems with very limited attention, physical restlessness, and extreme impulsivity," explained Rachel Greenbaum, a clinical psychologist with the Children's Mental Health Team at Surrey Place Centre in Toronto, who conducted the study as part of her doctoral dissertation. "However, social deficits in children with neurodevelopmental disorders may have different underlying mechanisms," noted Piyadasa W. Kodituwakku, associate professor of pediatrics and neurosciences at the University of New Mexico School of Medicine. "For example, children with ADHD experience social problems because of poor self-regulation rather than deficient knowledge of appropriate social behavior. In other words, a child with ADHD may accurately recite social rules, but fail to apply them. In contrast, social difficulties in a child with autism may result from a fundamental deficit in social sense, referred to as mind-blindness. Thus, when delineating qualitative differences in social phenotypes of neurodevelopmental disorders, it is important to assess not only observable behaviors, but also their underlying cognitive mechanisms." This study looked specifically at social-cognition and emotion-processing abilities, said Joanne Rovet, a professor at the University of Toronto and senior scientist in neurosciences and mental health at the Hospital for Sick Children, and supervisor of the fetal alcohol research program. "'Social cognition' refers to the ability to consider and differentiate between the beliefs, thoughts, feelings, and intentions of oneself and others," said Rovet, who is also the study's corresponding author. "This involves understanding the meaning of social information and knowing how to interact appropriately. These abilities are important for communicating and relating successfully with others. 'Emotion processing' refers to understanding and processing information related to feelings. This includes the ability to recognize and differentiate between varied emotions in others and in oneself. These skills are also important for relating and communicating socially with other people." Greenbaum and her colleagues recruited three groups of children ? 333 (16 boys, 17 girls) with FASD, 30 (24 boys, 6 girls) with ADHD, and a "normal" control group of 34 (18 boys, 16 girls) ? from a pre-existingg data pool, clinics, communities, and schools in the greater Toronto area. The mean age was 9.2, 9.3 and 8.9 years, respectively. All completed tasks were designed to measure social cognition and emotion processing. Additionally, parents and teachers used standard questionnaires and scales to assess the children's behavioral problems and social skills. "Our findings show that overall, children with FASD have more sevvere behavioral problems," said Rovet. "In terms of social cognition and emotional processing, the core deficit in FASD appears to be in understanding and interpreting another's mental states and emotions." Rovet added that a "profile" of children with FASD would include items such as high distractibility and restlessness, as well as behaviors often described as "out of control" and juvenile. "Based on previous work from our lab, children and adolescents with FASD were more likely than children with ADHD to engage in antisocial behaviors, such as cheating, stealing and acting young, as well as sociopathic behaviors including lying and stealing," she said. "Importantly, the findings from our present study, specifically the significant differences in social cognition and emotional processing between children with FASD and ADHD, may underlie the severe conduct problems observed in children prenatally exposed to alcohol." "In other words," said Kodituwakku, "children with FASD and ADHD have social difficulties, but what is contributing to these difficulties may be different. For example, a child with ADHD may be able to predict how another child would feel in a certain situation, but he or she may do something to hurt that child's feelings despite this ability. On the other hand, a child with FASD may do something to hurt someone else's feelings because of an inability to appreciate that person's reactions. This difference has implications for the development of social-skills training programs. That is, a training program designed for a child with ADHD may include procedures targeting how to translate what the child already knows into actions, while a program designed for a child with FASD may address both building specific cognitive skills and practicing appropriate actions." "One of the major contributions of this study pertains to understanding what children with FASD look like from a truly clinical perspective," said Greenbaum, "helping to clarify for clinicians trying to diagnose and treat them the full extent and specific nature of their previously unidentified problems, thus extending treatment possibilities that may help alleviate some of their more debilitating antisocial and behavioral problems." One finding with potential for immediate action was that children with FASD have difficulty interpreting social information, including emotions in faces, said Rovet. "These difficulties predict their behavior problems and are linked to their social development," she emphasized. "It is imperative that these children receive assistance in social and emotional processing domains, specifically targeting interventions to deal with their unique deficits." Alcoholism: Clinical & Experimental Research (ACER) is the official journal of the Research Society on Alcoholism and the International Society for Biomedical Research on Alcoholism. Co-authors of the ACER paper, "Social Cognitive and Emotion Processing Abilities of Children with Fetal Alcohol Spectrum Disorders: A Comparison with Attention Deficit Hyperactivity Disorder," were: Rachel L. Greenbaum of the Children's Mental Health Team at Surrey Place Centre; Sara A. Stevens of the Department of Psychology at the University of Toronto and the Neuroscience and Mental Health Program at The Hospital for Sick Children; Kelly Nash of the Neuroscience and Mental Health Program at The Hospital for Sick Children and the Ontario Institute for Studies in Education of the University of Toronto; Gideon Koren of the Motherisk Program, and the Department of Pediatrics at the University of Toronto. The study was funded by the Canadian Institutes of Health Research, and the Natural Sciences and Engineering Research Council of Canada. This release is supported by the Addiction Technology Transfer Center Network at http://www.ATTCnetwork.org. -------------- next part -------------- An HTML attachment was scrubbed... URL: /pipermail/fasd_canadian_link/attachments/20090718/63b3f3dc/attachment.html From rosse at ncf.ca Sat Jul 18 20:28:34 2009 From: rosse at ncf.ca (Elspeth Ross) Date: Sat Jul 18 19:34:12 2009 Subject: [Fasd_canadian_link] FASD Conference New Westminster B.C. Oct. 23 - 24 Message-ID: <6.2.5.6.2.20090718143722.03a9e220@ncf.ca> Skipped content of type multipart/alternative-------------- next part -------------- A non-text attachment was scrubbed... Name: Finding_Success_Conference_Brochure_Final_revisedjul7doc.doc Type: application/msword Size: 614400 bytes Desc: not available Url : /pipermail/fasd_canadian_link/attachments/20090718/d95c1542/Finding_Success_Conference_Brochure_Final_revisedjul7doc-0001.doc -------------- next part -------------- From rosse at ncf.ca Sat Jul 18 20:31:55 2009 From: rosse at ncf.ca (Elspeth Ross) Date: Sat Jul 18 19:34:18 2009 Subject: [Fasd_canadian_link] FASD Conference Edmonton Oct. 7 - 9 Message-ID: <6.2.5.6.2.20090718193147.03e96a20@ncf.ca> Skipped content of type multipart/related-------------- next part -------------- From rosse at ncf.ca Sat Jul 18 20:32:24 2009 From: rosse at ncf.ca (Elspeth Ross) Date: Sat Jul 18 19:34:21 2009 Subject: [Fasd_canadian_link] Health care's missing care Message-ID: <6.2.5.6.2.20090718193214.03e96648@ncf.ca> [The sentiments here also apply to us who live & work in FASD. Doctors can't know what it is like to live with the effects of fetal alcohol, but they should be able to acknowledge the difficulties we face and do some caregiving. This is hard with an invisible disability, as ARND is.]ER "...caregiving begins with the clinical ethical act of acknowledging the situation of the sufferer, affirming his or her efforts and those of family and friends to respond to pain and impairment, and demonstrating emotional and moral solidarity with those efforts...." "...we must incorporate the humanities into medical training..." www.theglobeandmail.com Globe & Mail Opinions The Globe Essay Health care's missing care Arthur Kleinman From Saturday's Globe and Mail Last updated on Friday, Jul. 17, 2009 02:25AM EDT [Illustration] Caregiving is a lost art, says Arthur Kleinman ?let's restore humanities to the same level as diagnosis and treatment Caregiving is understood by economists as a ?burden,? by clinical psychologists as a ?coping process,? by health-services researchers in terms of health-care costs, and by physicians as a matter of clinical competency. But, for many people, caregiving is a foundational component of moral experience. It is a practice of acknowledgment, empathic imagination, witnessing, responsibility, solidarity and the most concrete forms of assistance. It is this moral aspect that makes caregivers, and at times even care-receivers, feel more ?present? ? and thus more fully human. But, aside from skilled nursing, rehabilitation efforts by occupational and physical therapists, and the practical assistance of social workers and home health aides, caregiving, especially for victims of health catastrophes and end-stage conditions, has relatively little to do with the contemporary practice of medicine. To illustrate this point, I draw on my personal experience as the caregiver for my wife, Joan Kleinman, who suffers from a severe neurodegenerative disorder that has impaired her memory and motor functions, restricting her independence. I wake her up in the morning, assist her in toileting, bathing and dressing, make us breakfast and help her feed herself. I assist her in walking, placing her in a chair and getting into our car. I am with her nearly all the time to protect her from injuring herself, because she can neither see nor navigate safely on the street or in our own home. I read the newspaper and books to her, explain stories on the TV and select music for her to listen to, and make telephone calls for her to our children and grandchildren. I prepare lunch and dinner and help her eat; and I do all the things required to get her ready to go to bed at night. Of course, our children, my mother, my brother and others call and help when they can, and several times a week we are assisted by a professional home health-care helper who does the washing, cooks several meals and spends the daytime hours with her. Joan herself does as much as she is able to do. She rarely complains and, except for an occasional agitation that is beyond her control, she struggles to enjoy life and usually succeeds in doing so. In this and several even more crucial ways she is her own caregiver. She keeps up her part in our conversations, emotional exchanges and moral relationship. It is disturbing to witness the deterioration of a once elegant, intellectually lively and highly independent companion of more than four decades. But our emotional reactions, from frustration and anger to sadness, have been cushioned and sublimated by our work, the long rhythm of our days together and, above all, the support of family and close friends. That concern and responsibility for us are as much a part of caregiving as all the mundane practices I have listed, and amount to moral solidarity with our struggle. I give this personal sketch because it is the best I can do to illustrate what caregiving entails, and why it is so crucial to everyone's life ? and to the human condition more generally. Caregiving, as illustrated by our case, includes what happens when hope and consolation are abandoned, when theodicy ends and when all there is to do is to be present with the sufferer, sharing his or her suffering by simply ? and usually silently ? being there. THEORY AND REALITY What is the status of caregiving for health catastrophes and other serious conditions in medicine today? While medical educators say it is still central to what it means to be a physician and point to courses and practitioners who teach the art of caregiving to students, the on-the-ground reality is much more uncertain and fragile. Most physicians, apart from primary-care providers, do little in the way of hands-on caregiving. Hospice doctors are caregivers; physicians who routinely deal with the end of life, such as oncologists and cardiologists and nephrologists and gerontologists, are surrounded by caregiving opportunities, yet few take part in its nitty-gritty ? leaving the practical assistance and emotional tasks to nurses, social workers and the patient and his or her network of support. In medical school, the curriculum in both basic science and the clinical-apprenticeship years places the greatest emphasis on understanding disease processes and high-technology treatments. The illness experience gets less and less pedagogic attention, as the student progresses from classroom to inpatient ward and clinic. In the broader system of health care, students can all too readily discern that medicine largely leaves caregiving to others. Those others include nurses, whose professional science has made caregiving a central element of knowledge production and training. This knowledge is largely unavailable to young physicians and medical students. Its association with a lower-status profession may even confer upon it something of a stigmatized status. Notably, caregiving still has a strong gender bias; most caregivers are women. Historically and cross-culturally, this is even more impressively true. What is particularly true of our time and especially in my own society is that the structure of service delivery and the funding of health services work to discourage professionals from the art of caregiving and can in fact undermine the practitioner's efforts. Part of the mistrust of doctors is the growing sense that they seem uninterested in caregiving. The late, great physician-educator Walsh McDermott of Cornell University once proposed that the caregiving and technological roles of the doctor might be separated, and the former dropped from medicine as a burdensome and poorly cultivated anachronism ? probably saying this tongue-in-cheek to stimulate discussion of how to strengthen caregiving in the curriculum. If we honestly look at today's medicine, we must come away with an accumulating sense that caregiving is at best inadequately taught and supported among students and physicians, and at worst is a hollow skill that has been emptied of content, commitment and competence. It is a vestigial component of medical training and practice, which occupies a position in the profession as marginal as clinical experience has in the age of ?evidence-based? practice. Physicians should ask themselves what serious effort has been made in determining and operationalizing the knowledge needed to provide good care? What time has been allotted for acquiring this skill in medical school and residency training? For example, do students get placed in the homes of victims of health catastrophes, so that they actually experience caregiving? What has been done to evaluate future doctors' skills in this respect? How often is assessment of caregiving skills taken as seriously as assessment of basic science and clinical knowledge? Has medicine turned its back on the medical art and the thousands of years of humanistic approaches to medical practice? The current state of affairs is a moral impoverishment of the practice of medicine. For medical anthropologists, people everywhere live in the flow of interpersonal interactions in local worlds ? social networks, families, institutions and communities. That is to say, experience, viewed as the flow of words, movements and emotions among us, is not only local, but also inherently moral, because living our lives is about animating and enacting values. For patients and families faced with health catastrophes and serious chronic medical conditions, the experience of suffering is not just a personal one, but is strongly influenced by cultural and historical changes in the processes that contribute to moral life being distinctive in different eras and societies. Faced with a threat of pain, disfigurement, loss of function and serious disability, individuals and families reframe the experience of suffering within their local moral world by remaking meanings, emotions and values via ethical, religious and aesthetic activities. WHERE CAREGIVING BEGINS What is caregiving for physicians and what is the knowledge base from which it is to be practised and taught? Boiling down a variety of studies of the frail elderly, dementia and terminal conditions, for example, we can say that caregiving begins with the clinical ethical act of acknowledging the situation of the sufferer, affirming his or her efforts and those of family and friends to respond to pain and impairment, and demonstrating emotional and moral solidarity with those efforts. It moves on to involve the physician in pain management, symptom relief, treatment of other ?intercurrent? diseases (such as depressive disorder) that may arise during the first disease, and judicious management of the use of pertinent technology and control of unnecessary or futile interventions. It includes working within a network of advisers (legal, financial, religious), other health professionals (such as physical therapists, occupational therapists, nurses, social workers and home health-care assistants), and family and network caregivers. It often involves advising on appropriate use of hospital and home health-care technology. And it means spending real time with patients, empathically listening to their illness narratives, eliciting and responding to their explanatory models, and engaging the psychosocial coping processes involved in enduring or ending life. Managing the process of dying and being a presence at death and assisting, insofar as it is wanted, with bereavement are also part of caregiving. These involve moral, affective and meaning-making activities that we have learned much more about in recent years. Included here too is self-management of the physician's own emotional and moral responses, which may at times require attention to his or her own ethical, religious and aesthetic needs. Doctors are no different from laypersons in drawing on personal and cultural resources ? involving imagination, responsibility, sensibility, insight and communication ? to accomplish their caregiving. And what they engage in is an amalgam of ethical, aesthetic, religious and practical action. The physician's art ? now so circumscribed by bureaucratic, political and economic forces ? turns on both the professionalization of these inherently human resources and the impact of their routine use on the doctor's own moral life. ENABLING THE PHYSICIAN To prepare for a career of caregiving, medical students and young doctors clearly require something besides scientific and technological training. Indeed, current professional education can even be seen as enabling the physician as a technical expert, while disabling him or her as a caregiver. To overcome this trend, we must incorporate the humanities into medical training as a means of rekindling and deepening those human experiences of imagination and commitment that are essential for caregiving, and resisting the bureaucratization of values and emotional responses that causes failure in the physician's art. In essence, the practitioner must come to feel that the art of caregiving is as much at stake as the science and technology of diagnosis and treatment. In my view, what is needed is reform of the very culture of contemporary biomedicine. We must train students and practitioners in critical self-reflection on that which limits their caregiving; in strategies and techniques aimed at opening a space for the moral acts of caregiving; and in the most concrete and practical acts of assistance, so that they never forget what caregiving actually means. Arthur Kleinman is professor of medical anthropology at Harvard University and author of What Really Matters: Living a Moral Life Amidst Uncertainty. -------------- next part -------------- An HTML attachment was scrubbed... URL: /pipermail/fasd_canadian_link/attachments/20090718/e18e31c2/attachment-0001.html From rosse at ncf.ca Mon Jul 27 17:16:00 2009 From: rosse at ncf.ca (Elspeth Ross) Date: Mon Jul 27 16:22:14 2009 Subject: [Fasd_canadian_link] FASD Certificate Program Toronto Child Welfare Institute Message-ID: <6.2.5.6.2.20090727161549.05843df0@ncf.ca> Skipped content of type multipart/related-------------- next part -------------- From rosse at ncf.ca Tue Jul 28 15:00:47 2009 From: rosse at ncf.ca (Elspeth Ross) Date: Tue Jul 28 14:04:16 2009 Subject: [Fasd_canadian_link] Invitation: FASD family research in the park July 30 Ottawa Message-ID: <6.2.5.6.2.20090728140034.036d6c78@ncf.ca> [Sorry to send this so late.] sent on by Elspeth(away last week) INVITATION Date: Wed, 22 Jul 2009 14:50:00 -0400 From: Diana Fox Subject: correct date: FASD research in the park The FASD Coalition's Community Training Working Group will be working with a team from Mosaic International (http://www.mosaic-net-intl.ca/) to gather your suggestions on a) the best ways for families to approach services for their FASD affected family member and b) the most effective practices when working with families as a unit. The team, using a variety of fun and creative research tools, will seek your responses which will be used to help Coalition members set goals and determine future projects. Family members and service providers are invited to attend this fun and informative gathering. On Thursday, July 30th, 2009 from 10:30-1:00 (lunch included: bbq hot dogs, salads, drinks). We will meet at the Heron Park Community Building and City of Ottawa Park, Clover Street (Clover Street and Heron Road., 3 blocks west of Bank Street, north on Heron). The park includes a community pool for youngsters, slides, swingsets, baseball field, etc. So bring your young and older children so that we can hear suggestions from the family; the research team will have exciting research activities for all ages. Please note childcare is not provided. Registration is required in order to determine the amount of food to purchase. Thanks, Diana Fox 613-521-6721 -------------- next part -------------- An HTML attachment was scrubbed... URL: /pipermail/fasd_canadian_link/attachments/20090728/91ad35f7/attachment.html From rosse at ncf.ca Tue Jul 28 15:49:24 2009 From: rosse at ncf.ca (Elspeth Ross) Date: Tue Jul 28 14:52:27 2009 Subject: [Fasd_canadian_link] Fetal Alcohol Disorders Often Misdiagnosed as ADHD Message-ID: <6.2.5.6.2.20090727145226.05a007a0@ncf.ca> Skipped content of type multipart/related-------------- next part -------------- From rosse at ncf.ca Tue Jul 28 15:52:59 2009 From: rosse at ncf.ca (Elspeth Ross) Date: Tue Jul 28 14:52:35 2009 Subject: [Fasd_canadian_link] Plan to curb birth defects from alcohol: New Zealand Message-ID: <6.2.5.6.2.20090728145250.03429920@ncf.ca> http://www.stuff.co.nz/dominion-post/news/2669583/Plan-to-curb-birth-defects-from-alcohol Plan to curb birth defects from alcohol By KATHERINE NEWTON - The Dominion Post Last updated 08:42 24/07/2009 Birth defects caused by mothers drinking while pregnant are costing New Zealand $1 billion each year, says a group leading a project to raise awareness of the problem. The Parnell Rotary Club will start a pilot campaign in the Auckland suburbs of Glen Innes and East Tamaki this year to raise awareness among teenage girls and their families of foetal alcohol spectrum disorder. FASD, which can develop when babies are exposed to alcohol while in the womb, causes mild cognitive and developmental problems through to serious physical and mental disabilities. The group told Parliament's health select committee that about 640 New Zealand babies were born with FASD each year. With the cost for each baby estimated at $1.6 million over its lifetime, the economic impact of FASD was more than $1b each year, project convenor Louise Carroll said. The pilot project will use posters and a website to inform girls and young women of the effects alcohol can have on their babies. Rotary hoped to extend the campaign throughout the country if it proved successful in raising awareness. A 2008 Health Ministry report found there was little evidence that public awareness campaigns reduced alcohol consumption in pregnant women. However, FASD researcher Jenny Salmon said mothers she interviewed for her book, Fetal Alcohol Syndrome: New Zealand Birth Mothers' Experiences, told her they would never have drunk alcohol while pregnant if they had known it could harm their babies. One woman, Naomi, who gave birth to a daughter with FASD in the 1990s, said she did not know she was damaging her daughter's brain. "I wouldn't have done it otherwise, I wouldn't have put her at risk." Alcohol Healthwatch researcher Christine Rogan, who is advising the Rotary group, said that, although there was no guarantee that women would stop drinking during pregnancy if they knew it would harm their child, awareness was the first step to preventing it. Food Standards Australia New Zealand was considering an application calling for pregnancy warning labels on alcohol and Ms Rogan said she hoped that would go ahead. Health Ministry guidelines say there is no known safe level for alcohol consumption during pregnancy and recommend abstinence. -------------- next part -------------- An HTML attachment was scrubbed... URL: /pipermail/fasd_canadian_link/attachments/20090728/26fe487d/attachment.html From rosse at ncf.ca Fri Jul 31 23:00:41 2009 From: rosse at ncf.ca (Elspeth Ross) Date: Fri Jul 31 22:04:10 2009 Subject: [Fasd_canadian_link] Alcohol abuse leaves toxic school legacy: U.K. Message-ID: <6.2.5.6.2.20090731214948.03a17378@ncf.ca> "...Some countries, such as Canada, have been developing ways of helping pupils for more than 20 years..." http://www.tes.co.uk/article.aspx?storycode=6014486 TES Connect Times Educational Supplement London, U.K. Alcohol abuse leaves toxic school legacy News | Published in The TES on 29 May, 2009 | By: William Stewart Overlooked syndrome affects thousands, but teachers lack official advice The school system has failed to recognise and deal with a learning disability that is jeopardising tens of thousands of pupils' educational chances, The TES can reveal. Teachers currently have no official advice or guidance on foetal alcohol spectrum disorder (FASD), caused by drinking during pregnancy, despite estimates that one in 100 UK-born children is affected. This figure is expected to rise following increases in binge drinking among women. The condition - the most common non-genetic learning disability - affects numeracy, behaviour, and cognitive and social skills, but often goes unnoticed or misdiagnosed in schools in England. Campaigners say education ministers have fobbed them off when they have asked for guidance for teachers, and the Department for Children, Schools and Families was not interested. Labour politicians in Westminster are backing their calls for change. Some countries, such as Canada, have been developing ways of helping pupils for more than 20 years. But Oxford University professor Barry Carpenter, the Specialist Schools and Academies Trust's director of special educational needs, said: "Currently, there is no direct guidance from any government agency in the UK to teachers on how to educate children with FASD." The DCSF website contains numerous pages of guidance on conditions such as attention deficit hyperactivity disorder, but nothing on FASD, which affects 10 pupils in every average-sized secondary. Asked to respond, the DCSF said it was a matter for the Department of Health, which said it was not responsible for guidance to teachers. Susan Fleisher, director of the National Organisation on Fetal Alcohol Syndrome, said she had tried to set up two meetings on the subject with DCSF ministers, but had been "fobbed off" with department officials on both occasions. "They really were not interested," she said. "I think it is because they don't realise it is such a big problem. This condition is far more common than anyone realises. "If teachers are trained about it, it will make a huge difference." This month Professor Carpenter was selected to head a study on how learning is affected by the disorder, supported by Pounds 50,000 from the Training and Development Agency for Schools. The agency said it wanted its research to focus on the "most prevalent types of special educational needs". Approaches to teaching pupils with FASD were not well established, unlike those with sensory impairments and other severe difficulties, it said. Ms Fleisher welcomed the funding but said it was just "a drop in the ocean". Lord Mitchell, a Labour peer, said: "The problem is that if you speak to the education ministers, they will say everybody is bombarding them with calls for changes all the time and that what the teaching profession needs is consistency. "But pupils with this syndrome are frequently put into the 'awkward squad' category, and it would help if teachers were able to know about the cause of their behaviour." Professor Carpenter argues that improving these pupils' education is essential for them and for society as a whole. He points to US studies that show 60 per cent of people with the syndrome will enter the criminal justice system and 23 per cent will attempt suicide as adults. "There is a multiple educational jeopardy around these children, which means that the current style and structure of many classrooms is not conducive to engaging them as effective learners," he said. .... Comment (6) * Add in the children damaged by prenatal drug addiction and no wonder some schools have trouble getting 2 sublevels progress per year in primary. A high proportion of the pupils in the schools I've worked in have been affected by prenatal drink/drugs, but this appears to be invisible to LEA/Ofsted. (A couple of years ago 2 sublevels progress was considered above average - it would result in all average year 2 pupils being above average by year 6 - but now 2 sublevels is only 'satisfactory' - and pupils who have fallen behind are expected to make 3 sublevels progress to catch up - irrespective of whether they might have learning difficulties caused prenatally.) It would be good to see some official acknowledgment that some children do genuinely have difficulties in retaining their learning, that it isn't purely caused by poor teaching. Unsuitable or offensive? 10:22pm 31 May, 2009 dillsage * The lasting effects from alcohol consumption up on the developing child during pregnancy could lead to a life time of problems for all. * We are adopted parents to a young man with a FAS diagnosis. His journey from the age of 7 months through life and school has been a nightmare. NO teacher we ever spoke to had any idea of FASD and the learning problems, or his needs associated within education.. He was always considered to be the naughty child with big behavioural issues and a child from a dysfunctional family. After many, many fights with the education department were we live we managed at high school level( age 11) to secure a place in a Moderate Learning Disability school for him, however this was out of borough this required further needless additional expense incurred having to provide transportation to and from school. He also is completely isolated due to the fact his school friends are too far away. * To many children now have an assortment of diagnosis the most common is ADHD. If we reflect upon the last 15 years, alcohol has become more acceptable for all sectors of society to drink alcohol. Binge drinking is a way of life. Children as young as 9 upwards are experimenting with alcohol. In the words of Michael Dorris "The Broken Cord" We are producing generations of under achievers. * Gloria Armistead * www.fasaware.co.uk 12:27pm 1 June, 2009 fasawareuk * I fear this is the tip of an iceberg.The number of pupils and young people suffering from one of the various forms of Attachment Disorders will often come from a backgound of substance abuse by their mothers, and FADS will compound this.Dealing with it, as schools and society, has yet to be taken seriously. All that happens is that when a school/syllabus/curriculum is deemed to have failed, the correction is aimed at the thing itself, not at the pupils who are failing to engage, for whatever reason. Until child development, and those factors that inhibit its healthy progress, is placed stage centre in all initial training and subsequent CPD, the situation will only lurch on in its present reactive way. We must aim for an education system that places children in a central position, supported by staff who are confident in their training, and have the freedom to teach according to needs, not centralised 14:26pm 1 June, 2009 kmas * Our adopted son was diagnosed with FAS six years ago. Since that time he has attended two schools, both seemingly oblivious to the seriousness and indeed relevance of such a life-long condition. Providing my son meets their targets, providing he doesn't disrupt the school environment more than any other child who may have any other syndrome, he is naively labelled as "normal" (by the SCHOOL that is, not the medical profession! ) and there seems little incentive to look further. Yet take the trouble to find out why he is having so much difficulty with mathematics whilst excelling in other areas, why he learns and consolidates a concept one moment only to completely lose it the next, why he depends so much on others to to do things for him, why he is emotionally immature and acts the idiot, why he asks odd questions, why he feels "drunk" upon waking....... * Whilst his teachers believe he is simply "not making the effort", the gap between expectation and achievement may lead, as is well documented, to depression and possible suicide in later life. Another alarming statistic is that around 50% of FAS sufferers get into trouble with the law. This is not to say that in school these children necessarily show signs of criminal behaviour. School is often a safe place for these children as they can depend on structure and routine and being told how to behave. The FAS school leaver is likely to feel very insecure, especially if they have had no understanding and extra support during their school years. * Parents also get a raw deal as they feel isolated and unable to communicate with a school who simply "don't get it". How much worse it must be for a birth-mother who carries the burden of guilt ontop. * My knowledge of FAS and FASD has come from my own research. Sue Fleisher is doing some sterling work campaigning politicians and the general public to raise awareness. Sadly the message filters all too slowly as ignorance and often negative attitudes provide frustrating barriers to learning. * As schools wait for the "official advice" , consciencious teachers can be doing their own homework : www.fasaware.co.uk * scroll down to "critical/important documents" * select and print whatever interests you * pin it to your staff-room notice-board 11:14pm 2 June, 2009 lauramary * Surely as teachers we teach the whole child. The label does not, or should not ,matter. * We do not need particular help dealing with FAS. This label merely stigmatises a child and is not useful in the classroom. * Looking at the problems a child may have and the ways to support their learning shows there is nothing of significance that needs to be done purely for a child with FAS. 7:13pm 3 June, 2009 helenaferris * Teaching children with Foetal Alcohol Spectrum Disorders for full uptodate resourses see TES Resourses or www.FASaware.co.uk, 16:09pm 5 June, 2009 Realinfo -------------- next part -------------- An HTML attachment was scrubbed... URL: /pipermail/fasd_canadian_link/attachments/20090731/81981bde/attachment.html From rosse at ncf.ca Fri Jul 31 23:07:50 2009 From: rosse at ncf.ca (Elspeth Ross) Date: Fri Jul 31 22:10:08 2009 Subject: [Fasd_canadian_link] 'Drunk' and disorderly: the children damaged while still in the womb: U.K. Message-ID: <6.2.5.6.2.20090731214422.03c6df98@ncf.ca> "...may never have heard of foetal alcohol spectrum disorder (FASD). But if you are a teacher, you are almost certain to have had pupils battling its symptoms in your class...." [See at the end: "How teachers can help FASD children in class"] http://www.tes.co.uk/article.aspx?storycode=6014516 TES Connect Times Educational Supplement London, U.K. 'Drunk' and disorderly: the children damaged while still in the womb Analysis | Published in The TES on 29 May, 2009 | By: William Stewart Unruly hard-to-teach pupils may be among those whose development has been stunted by their mothers' use of alcohol. Too often ignored, the syndrome is the most common non-genetic learning disability in the UK. William Stewart reports You may never have heard of foetal alcohol spectrum disorder (FASD). But if you are a teacher, you are almost certain to have had pupils battling its symptoms in your class. The condition, estimated to affect one in 100 of all children born in the UK today, has been around for as along as pregnant women have consumed alcohol. Aristotle appeared to be aware of its risks in the 4th century BC when he said: "Foolish, drunken and harebrained women most often bring forth children like unto themselves, morose and languid." In 1834, evidence presented to a House of Commons committee investigating drunkenness noted that infants born to alcoholic women sometimes had a "starved, shrivelled, imperfect look". Today we know that, as well as the particular facial and physical characteristics associated with more severe cases, alcohol during pregnancy can cause brain damage to the foetus, leading to problems with numeracy, short-term memory, cognitive and social skills and behaviour. One mother, Julia Brown, founder of the FASD Trust, says: "It's like living with someone who is drunk. They are clumsy, suffer memory loss and display socially inappropriate behaviour. They think they are invincible, that they are Superman and can fly." In short, it makes children very difficult to teach. Yet this syndrome - the most common non-genetic learning disability in the UK, a condition that involves irreversible brain damage and goes to the heart of how children learn - is virtually unrecognised in our schools system. Thirty-six years after the disorder was first identified by scientists, there is still no official guidance for teachers in England on how to educate those affected. Professor Barry Carpenter, an Oxford University academic who has fought an eight-year solo battle for official recognition of the syndrome in schools, argues that these children have been "sorely neglected". The amount of help offered to pupils with attention deficit hyperactivity disorder is striking in comparison. ADHD is the more prevalent condition - estimated to affect between 3 and 7 per cent of pupils. But if children with FASD had a seventh of the resources devoted to ADHD available to them, they would probably improve immeasurably. A search for ADHD on the Department for Children, Schools and Families website brings up the maximum 100 entries. But type in FASD and you get nothing of relevance at all. So why does such a common condition receive so little attention? Because in many cases it goes completely undetected. Susan Fleisher from the National Organisation on Foetal Alcohol Syndrome, says: "The majority of children with FASD look normal, are very articulate and verbal, but their thinking has been scrambled and everyone thinks it's because they aren't trying," she says. Most pupils with the condition either go undiagnosed, she says, or they are misdiagnosed - usually as having ADHD. The two conditions share symptoms such as short attention spans, difficulty in carrying out instructions and hyperactivity. But they are also different in very important respects and confusing the two can have potentially serious consequences. "Pupils with ADHD are often quite good at maths," Professor Carpenter explains. "But for those with FASD, mathematical and numerical concepts can be very difficult because the parietal lobe, which controls numeracy and computational activity in the brain, may have significantly reduced functioning." The academic, who is also special educational needs director for the Specialist Schools and Academies Trust, has just managed to secure Pounds 50,000 from the Training and Development Agency for Schools for a NOFAS research project into how learning is affected by the disorder. But Ms Fleisher describes the funding as a "drop in the ocean". "There is so much more that could be done," she says, still smarting from the lack of interest shown by the DCSF. Other countries have gone further. Canada's education system is more than 20 years ahead, according to Professor Carpenter, and has introduced "extensive guidance and a well-developed system of provision for these children". Asked why, he points to Canada's Native American and Inuit communities. Like other indigenous peoples, such as Maoris and Aborigines, he says they are more susceptible to the damaging effects of alcohol, with FASD affecting as many as one in eight births. But the UK has its own reason for the syndrome being a big issue - binge drinking. "Every time a female goes binge drinking and conceives, it is a fair estimate that another child will be born damaged by alcohol," Professor Carpenter says. Heavy drinking can interfere with the menstrual cycle, he says, so there is a good chance that these women may not even realise they are pregnant during the crucial first 12 weeks when the foetus is most vulnerable to alcohol damage. He fears many continue drinking, oblivious to the harm they are doing. And the problem is likely to get worse. Research published earlier this month by the Joseph Rowntree Foundation revealed that the proportion of women who binge drink almost doubled between 1998 and 2006. Campaigners want schools to do more to raise awareness of the dangers of drinking during pregnancy. But there is also a lot that teachers can do for pupils with the syndrome. Professor Carpenter's early research suggests that the classroom itself - the physical environment in which these pupils learn - can make a big difference. Calming colours, subdued lighting and avoiding visual clutter and distractions all help. He also recommends that teachers consider how they deploy staff and ensure they are aware of the needs of pupils with the syndrome. For example, if a child finds maths particularly challenging, a teaching assistant could be made available to support them during the lesson. Other strategies can be devised to take account of the fact that pupils with the disorder tend to be better at learning visually rather than by being talked to. Relations with other pupils can be another major problem as children with the syndrome are often irrational but long for friendship. Teachers who try "buddy systems" can find the buddy is physically or verbally abused by the child with the disorder, so Professor Carpenter suggests that the system is operated on a rota, with different buddies for different lessons. Because pupils affected by the syndrome can experience mood swings, Professor Carpenter backs research that suggests teachers should develop flexible lesson plans. These could contain a core activity allowing pupils to acquire central skills, a simpler activity to support the core and link to earlier learning, and a possible extension activity that could reinforce the core skills in a different form. "The purpose of this is for the teacher to be able to pitch the learning for the day depending upon the child's mood and attitude to learning," Professor Carpenter says. "If the child is particularly distracted or emotionally volatile, then the support activity may be implemented, but if they are calm and engaged, then the extension activity could be used." Professor Carpenter's research will look at teachers in nine as yet unidentified primary, secondary and special schools who have developed ways of supporting pupils with the syndrome. He hopes the methods they employ can be used as examples to help pupils with FASD throughout the country. "They epitomise that much-used phrase, 'complex needs'," he says. "Their unusual style of learning and their extreme challenging behaviour is out of the experience of many teachers, and therefore they find themselves pedagogically bereft." www.nofas-uk.org THE FASD CONTINUUM - Full-blown Foetal Alcohol Syndrome (FAS) Sufferers have distinctive craniofacial abnormalities and growth difficulties. Typically, they display intellectual impairment. Symptoms may include abnormalities of the heart, misplaced or absent genital organs, small stature or other physical difficulties. The most obvious indicators are a small head, folds of skin around the eyes, and an indistinct philtrum (mid-line groove) from the nose down to an often thin upper lip. - Partial FAS/Foetal Alcohol Effects (FAE) Fewer characteristic features/more mild effects. Alcohol-Related Neurodevelopmental Disorder (ARND) Sufferers do not show the facial or physical characteristics, but learning difficulties emerge as the child gets older. SYMPTOMS TO SPOT - Hyperactivity - Short attention span - Erratic mood swings - Poor memory - Lack of social skills - Poor auditory/vocal/visual sequencing - Sensory integration difficulties (particularly lack of co ordination) - Poor retention of task instruction - Numeracy/mathematical difficulties. HOW TEACHERS CAN HELP FASD CHILDREN IN CLASS - Create a calm learning environment free from clutter and with minimal distractions - Use focused tasks presented in small steps - Provide personal space for the pupil, with plenty of support and praise - Use visual structuring - Carry out role playing - Give short, key information-carrying instructions - Use visual clarity and graphic simplicity. - Deploy frequent, short exercise programmes during the school day - Provide a breakdown of tasks with visual and tactile clues, and give the child time to complete the task - Give messages through a variety of sensory pathways - Seat the child at the front of the classroom, always in the same position - Use tape on the floor to define boundaries - Keep the classroom door closed - Close blinds partially if there is bright daylight. - Avoid bells - Be consistent with language, rewards and routines - Be prepared to repeat instructions and rules - Implement and stick to a routine - Provide structure and constant supervision - Employ adaptive teaching techniques that focus on the child's interests, strengths and developmental stage. Related content: Teaching Children with Foetal Alcohol Spectrum Disorders -------------- next part -------------- An HTML attachment was scrubbed... URL: /pipermail/fasd_canadian_link/attachments/20090731/297b7c41/attachment-0001.html