Your are here: Home > Resources > Our Newsletter > Archived Newsletters
 |
||
|
|
|
~ Valda ~ |
||
|
|
|
Archived Newsletters
October 2000
In this edition
Association Update A Most Sincere Thank You Notices Upcoming Events
New and Innovative Ways to Handle Stress The Five Best Reasons to Read Aloud to Your Children Parenting Children With Challenging Behaviour All for Sammy: Frustration, Elation And Utter Devotion Editor's Note
"We make a living by what we get, but we make a life by what we give."
Winston Churchill
Association Update
I would have to admit that it was with some trepidation that I took over the role of Chairperson for the Early Intervention Association of Nova Scotia one year ago. James Sanford, our very first Chairperson had done such an awesome job in the first four years of our existence that trying to fill his shoes seemed an insurmountable task ... so I didn't try!! I have instead pulled on my very own rubber boots (my most favorite working footwear) and simply tried to be comfortable in those.
Thanks to a most excellent Board of Directors, supportive partners and quality Early Intervention programs I am very pleased with the excellent developments, forward thinking and action oriented plans that have been initiated over the past year. I know as Chairperson I have only been the facilitator (alright, and sometimes a real taskmaster!), but we have many accomplishments to be proud of :
- our first province-wide Early Intervention Month was declared in February 2000 with a proclamation signed by Premier John Hamm. We also shared sponsorship of the Mary Gordon Family Literacy presentations in February.
- excellent advocacy has continued province-wide over the past year for the role of Early Intervention in Nova Scotia as a support for families and communities.
- further definition of our vision for Early Intervention was facilitated by Rick Paradis if the IWK Grace at our AGM in April. This has sparked interest in research into Best Practices for Early Intervention here in Nova Scotia and a committee has been meeting to delineate a research proposal.
- an increase in the budget line for early Intervention in the Nova Scotia budget in April will mean that Early Intervention should soon be a universal service in Nova Scotia. This is an enormous step forward and one which our Association (and many other individuals before us) has been working toward since our inception.
- coordination by EINS has resulted in an appropriate and affordable Professional Indemnity Coverage plan being made available to all interested EI programs in NS.
- on September 23, 2000 we signed our renewed partnership agreement with the IWK Grace Health Centre, an agreement which is time limited and action oriented so that we can measure the outcomes for both partners.
- and most recently, on October 5, 2000 in a national news release from Health Canada the Early Intervention Association of Nova Scotia was named as a key community partner for the consortium awarded the Centre of Excellence for Children and Adolescents with Special Needs (our link being through Mount Saint Vincent University).
My thanks to all of you who have made these accomplishments possible. As much of this list is actually ‘work in progress' I am looking forward to the developments that these beginnings will bring in the next year and on into our future.
Your servant, as ever ...
On a personal note I would like to thank all of you who sponsored Abigail and I in the Terry Fox Marathon of Hope in September. We managed to raise $825 to honour the life and work of our friend Ralph Blaikie who was taken by cancer on September 1, 2000. Couldn't do it without you!!
A Most Sincere Thank You ...
Thank you to the Cumberland Early Intervention Program legal advisor, Alden Blaikie, for his time and knowledge in explaining legal issues as well as reading and commenting on our provincial insurance policy.
Thank you to the Truckers Association of Nova Scotia for continued support. Their donation of $4500 from their province-wide fundraising efforts is an enormous boost to our Association. It allows us to assist parents and early Intervention staff to access educational and professional development opportunities which increase our knowledge about the children in our care.
Thank you to the wonderful people we have had to work with as we developed our renewed partnership agreement with the IWK Grace Health Centre. We were most fortunate to have benefitted from the talents of Marilyn Harris-Hart, Sheila Ross, Sarah Shea, Angie Davidson (or is that Dickinson??) And Janet Knox. We look forward to working with all of you as we act on this partnership agreement over the next few years.
Thank you to all who attended or participated in our partnership signing on September 23 in Truro. Our special guests included Virginia O'Connell from the Department of Community Services, Bill Dowe representing the Truckers Association of Nova Scotia, Janet Knox from the IWK Grace Health Centre and most especially parent Margie Hilchie who touched us with her story of how Early Intervention has made such a significant positive impact for her child and her family. We wish that Interventionist Ronda Bagnell could have been there to hear those words first hand!!
Notices
Our Association wishes to inform programs that we have designated an amount of $500 per quarter to be used to support parent education. This amount will be allocated on a first come / first served basis. Early Intervention programs should contact a member of the EINS executive to initiate the process (Barb Boiduk, Isabel den Heyer, Kim Arcon or Donna Dexter).
The Truckers Association of Nova Scotia has been concentrating on local activities as fundraisers for Early Intervention and the IWK. On September 30 they were seen picking apples in the Wolfville area and on October 7 a lively dance was held at the Wallace Community Hall. On Friday November 3 the Halifax County Truckers Association are having a fundraiser at the Sackville Legion. Festivities begin at 8 p.m. with a social hour, silent auction and raffles. A dance begins at 9 and continues until 1 a.m. All EINS members and supporters are encouraged to take part and to watch for other events as they arise in your area!!
Government of Canada recently released a booklet outlining services. Check their website at www.canada.gc.ca or call 1 800 622-6232 (TTY/TDD 1 800 465-7735) if you didn't get a copy. Sections on Health, Children, Connecting Canadians, Lifelong learning, and Persons with Disabilities may all have relevant information for our programs and the families we serve.
Five Centres of Excellence for Children's Well-Being were announced on October 5, 2000 by Health Minister Allan Rock and Foreign Affairs Minister Lloyd Axworthy with a commitment of $20 million over five years. The centres will act as national platforms for excellence in research and knowledge on the health and well-being of children and youth. The five centres include :
- The Centre of Excellence for Child and Youth-Centred Communities under the leadership of the Social Planning Council of Winnipeg.
- The Centre of Excellence for Early Child Development under the administration of the University of Montreal.
- The Centre of Excellence for Youth Engagement administered by the Students Commission, a national youth advocacy group.
- The Centre of Excellence for Child Welfare under the administration of the University of Toronto's Faculty of Social Work and the Child Welfare League of Canada.
- The Centre of Excellence for Children and Adolescents with Special Needs under the administration of Lakehead University.
The last mentioned Centre is of particular interest to our Association as it is a partnership which also includes the Government of Nunavut, University of Northern British Columbia, Memorial University and Mount Saint Vincent University. Our Early Intervention Association of Nova Scotia was named in the news release as a key organization that will contribute to the work of the centre. The Centre will investigate models for the prevention and early identification of special needs in rural and remote communities as well as considerations in diagnosis and treatment given the challenges of rural and remote service delivery. The use of technology and the role of traditional community based approaches will both be considered. For more information check out the news release at www.hc-sc.gc.ca/hppb/childhood-youth/centres/e_special.html.
The Centre will be administered and directed out of Lakehead University by Drs. Mark Howe and Julia O'Sullivan. Dr. Mary Lyon, Chairperson of the Department of Child and Youth Study at Mount Saint Vincent University is one of the three national Academic Co-Leaders and will coordinate the work in Nova Scotia and nationally around the family theme. Other members of the Department of Child and Youth Study and Department of Education are also involved. The Centre will be officially ‘opened' by Allan Rock in the near future and a detailed work plan will be developed.
Dr. Lyon describes this as a real opportunity for us to engage in collaborative research, information dissemination and training in Nova Scotia and to benefit from information from the rest of the country. All of the partners (there are 8 others in Nova Scotia) will be contacted in the near future to determine how best to proceed. Dr Lyon will be meeting with the EINS Board of Directors at the next regular meeting on November 4 in Truro. She asks us in the meantime to think carefully about priorities and specific projects to be proposed to the Centre.
There is also a web conferencing site attached to the above html.
Upcoming Events
October 19 - 22 Family Support: A National Priority Canadian Family Resource Programs Annual Conference, Aylmer, Que. (613) 728-3307 or www.cfc-efc.ca/frpc
October 21 Using Light Tech. Options to Establish Face to Face Communication Nova Scotia Hearing and Speech Clinic, Citadel Halifax Hotel. For information phone Alayne MacDonald (902) 473-1282
October 27 NSTU Provincial Development Day various opportunities across Nova Scotia Association of Teachers of Exceptional Children: Teaching Strategies for the New Millennium. Holiday Inn, Dartmouth. (no phone contact listed). Nova Scotia Teachers Association for Literacy and Learning: The Leading Edge. Redcliffe Middle School, Truro. Phone (902) 686-3774 for information. Speech-Language Pathologists and Audiologists Association: Applying Brain Research to the Classroom. Mount Saint Vincent, Halifax. Phone (902) 542-6054 for information. For other listings or contact info phone NSTU at 1 800 565-6788 or check with a local school or teacher for the booklet.
November 8 Effective Strategies to Aid Social/Emotional Development for More Able Individuals with Autism and Asperger's Syndrome Dr. Tony Attwood / Geneva Centre for Autism. Moncton, NB. Phone (416) 322-7877
November 16 - 18 Healthier Futures Through Recreation Recreation Nova Scotia Conference 14 Wing Greenwood, NS. Phone (902) 425-1128 or www.recreationns.ns.ca
November 16 - 18 Shifting Waves, Moving Mountains Family Service Canada National Conference, Vancouver, BC. (613) 722-9006 or www.familyservicecanada.org
November 20 National Child Day www.hc-sc.gc.ca/hppb/english/splash.html
December 3 International Day for Disabled Persons Canadian Abilities Foundation (416) 923-1885 or www.abilities.ca
September 2001 UN Special Session on Children Senator Landon Pearson http://sen.parl.gc.ca/lpearson/
New and Innovative Ways to Handle Stress ... not that we would have any!!
- pop some popcorn without putting the lid on
- when someone says "Have a nice day", tell them you have other plans
- make a list of things to do that you've already done
- drive to work in reverse
- bill your doctor for the time spent in his waiting room
- write a short story using alphabet soup
- stare at people through the tines of a fork and pretend they're in jail
- make up a language and ask people for directions
- fill out your tax form using roman numerals
The Five Best Reasons to Read Aloud to Your Children
From http://place.scolastic.com
- Study after study shows that reading aloud to children improves their reading, writing, speaking, listening, and, best of all, their attitudes about reading. It teaches them to want to read,, a foundation on which to build lifetime learners.
- Children listen on a higher level than they read. Most kid's reading levels don't catch up to their listening levels until eighth grade. That is why it's important for teachers and parents to continue reading aloud even after a child knows how to read.
- Reading aloud to children builds comprehension because listening comprehension almost always precedes reading comprehension.
- Reading aloud is a commercial for reading. Every time we read to a child, we're sending a pleasure message to the child's brain, conditioning him or her to associate books and print with pleasure.
- Reading is an accrued skill. The more children read, the better they get at it. By reading aloud, you're modeling this skill for them.
Parenting Children With Challenging Behaviour
From Family Service Canada "Lets Talk Families"
Challenging behaviour is any behaviour that interferes with children's learning, development and success at play; that harms the child, other children or adults; or that puts a child at high risk for later social problems or school failure.
Parenting a child with challenging behaviour is a challenge - but it is one that parents can overcome with the appropriate strategies. Here are some ideas that have been proven to work and which can benefit all children, not just those with challenging behaviour.
- be sure your child is confident of your love even if you don't always like the behaviour.
- encourage appropriate behaviour, and minimize the opportunities for challenging behaviour.
- make your home an environment where your child can succeed.
- plan activities around your child's needs.
- set clear limits and enforce them consistently.
- create routines and stick to them.
- learn to recognize anxiety in your child.
- tell your child what to do rather than what not to do.
- put yourself in your child's shoes and try to figure out where the challenging behaviour comes from.
STAY CALM!!
All for Sammy: Frustration, Elation And Utter Devotion Mark A Teenage Boy's Life With His Autistic Brother ...
"Sammy." The boy in the wheelchair looks up. "You want to go in the tepee?" Sammy, who cannot speak, nods. An adventure with his brother. The day at Fairytale Town is off to a good start. "Wait," Andrew says. "Let's leave this." He taps the wheelchair. This time Sammy grunts. He's ready. Andrew Perez, a 13-year-old with a mischievous streak, picks up his 50-pound brother and hoists him over his shoulder as if it were the most natural thing in the world. He's a little rougher than their mother would like - she's watching nearby and shouts at her oldest son to be careful - but her warnings only make Andrew act up even more. He starts walking as if he's going to fall down and drop his brother right there on the dirt. All this makes Sammy laugh - a strange, high-pitched squeal that soon draws the attention of other Labor Day visitors. One family stops and stares. It is a curious sight: the teenage boy with the flailing, screeching 8-year-old thrown over his back and their parents nearby, laughing. But no one in the Perez family notices the gawkers. It is a crisp, clear morning, the kind of day you look forward to all summer, and the family from Orangevale is determined to make the most of it.
There's David Perez, wearing shorts, a fishing hat and a camera around his neck, looking for the perfect shot of his sons. There's Marianne Perez, a petite woman with auburn hair and an iron will, tugging at the leash of her younger son's canine companion, Rangler. And then there are the boys, clinging to each other and laughing as they approach the tent. "I trust Sammy with Andrew more than anyone," their mother says later. "I know Andrew will always take care of his brother." And in his way, Sammy takes care of Andrew.
Sammy requires nearly constant care. A friendly boy with dark, doll-like eyes and a crooked smile, Sammy has profound disabilites including cerebral palsy, autism, cyclic vomiting syndrome and a rare malady called Kabuki syndrome, which has been identified in only a couple of hundred people worldwide. "An added perk," says his mother dryly. He cannot talk. He cannot swallow. He is not potty-trained. He is a demanding child. Andrew is a sensitive and articulate eighth-grader at Arcade Junior High in Sacramento. He plays video games, swims butterfly for a swim club, listens to hard rock in his room (Limp Bizkit is a favorite) and has a developing interest in "at least three girls at school. But I'm way too shy to do anything about it," he adds, hurriedly. In other words, he is a typical 13-year-old. But when the subject turns to Sammy or other people with disabilities, Andrew is mature beyond his years. Because of his brother, because of the looks from strangers and questions from friends, Andrew is becoming something of a disabled-rights advocate. Sammy has given him his voice. Recently, Andrew spoke to a room full of VIPs at a luncheon for the MIND Institute, the Sacramento-based center for the study of neurodevelopmental disorders. He's active in workshops for siblings of children with special needs called "Sibshops." But mostly he has made it his job - his mission - to talk to people about kids like Sammy.
"He was very moving," say Cheryl Busman, administrative assistant for the MIND Institute. "People commented afterward that he seems so mature for his age." But it is not always easy. "There are a lot of misinformed people," says Andrew, talking in his room. He's playing with Kirby, his pet rat, and Slippy, his frog. Something is on his mind. It is late afternoon on the first day of school. Andrew is bothered because of an incident that day, and he is not sure what to do. A teacher used the word "retard" in class. He was warning the students to stay away from ongoing construction and told them not to go near it "like a retard." Andrew became upset, but he didn't say anything. "I know the teacher didn't mean to be offensive," he says. "He was just using it because that's the way people talk. But it bothered me. "When people talk like that, I feel like they're talking about my brother. What should I do? I mean, he's a teacher ... and I'm just a kid."
When Andrew was a precocious toddler, he would nag his mother and father for a baby brother or sister. "He asked constantly," remembers his mother, laughing. "He kept telling me he didn't want to be an only child." But his mother wanted to wait until Andrew was in school before having another baby. "I wanted to give Andrew all the attention I could before having another one," says Marianne, 41. Andrew was 5 when Sammy was born on May 29, 1992. He and his parents were thrilled with his new brother. But when Sammy was a few months old, his parents noticed something was wrong and took him to the doctor. "They would say he was developmentally delayed," says David Perez. "So we thought, 'OK, he'll catch up.' " But he never did. At 7 months, the family started seeing specialists. At his 1-year checkup, they got the news. "What I remember most about that day, besides the shock and the helplessness, was that Andrew was playing on the floor when the doctor told us about Sammy," says David Perez, quietly. "We were stunned. My wife started to cry and Andrew looked up and asked us. 'What's the matter with Sammy?' "
First, and always first, is Sammy. His needs. His moods. His health. Always, Sammy. He is an unpredictable child. Warm and loving one moment. Screaming out of control in the middle of the grocery store the next. Taking care of him is a full-time job. Sammy is fed through a tube in his stomach four to six times a day. He takes seven different medications. His muscles must be massaged or exercised daily so they won't go soft. He is considered severely disabled, and there is a whole list of things Sammy cannot do. But here are a few things he can do: He can yell excitedly when his brother gets home from school, he can sign "I love you" with his hands, he can grab his dad around the leg and hug him, he can walk short distances, he can lie down on the floor with his dog, and he can touch his mother softly when she feeds him. He can say "ma, ma," "pa, pa" and "Bubba," his name for Andrew. No one really knows what goes on inside his head. His mother worries that her younger son gets lonely. "Sometimes I see him waving at pictures of children," she says. "It breaks my heart." That's why he now has Rangler, his canine companion. So he'll have somebody. And, of course, he has his brother.
Despite the physical and emotional limitations, despite the age difference, the brothers have formed a close bond. Andrew has learned how to feed his brother and knows which medications to give him at certain times of the day. He can speak in depth about Kabuki syndrome, which affects the way his brother looks and sounds. (Kabuki syndrome is named after the look of performers in the Japanese dramas because many of the sufferers have exaggerated eyebrows, pale skin and arched palates.) Andrew often will take over his brother's care when his mother gets tired. "He knows exactly what to do," says Marianne Perez. On a recent afternoon, the two brothers are lying around in the living room in front of the TV. The family lives in a well-kept home surrounded by trees. The boys each have their own rooms. But at this moment they are in the living room with their mother, who is feeding Sammy. Andrew sits beside them on the couch, arm-wrestling with his brother. The two will spend hours camped out in front of the TV watching videos, listening to music or playing "World Wrestling Federation," a game in which Andrew playfully wrestles with his little brother on the living-room floor. And like little brothers everywhere, Sammy likes to emulate his older brother. Shortly after Andrew bleached the tips of his brown hair blond, their mother did the same for Sammy. Then Andrew got his ear pierced. Soon Sammy was sporting an earring. And like older brothers everywhere, Andrew is fiercely protective of his younger brother. He'll glare at people who stare at Sammy too long and he will not tolerate "jokes" about his brother or other people with disabilities.
But then there are the hard days. When Sammy has a rough couple of days or weeks, the entire family suffers. Sometimes it's all too much for Andrew, and when that happens he goes into his room and locks the door. "It's Sammy all the time," says Andrew. "There are times I just want us to do things other families can do. Like being able to eat an entire meal at a restaurant. That's something we hardly ever get to do because Sammy gets upset and we have to leave." "There have been countless times when Sammy gets dirty looks and people point at him and whisper to each other. It is incredibly difficult not to go over to them and give them a piece of my mind." - from a speech Andrew gave at a luncheon for the MIND Institute.
The handful of children sitting in a circle at the park on a beautiful Saturday afternoon are talking about their brothers and sisters with special needs. Emily, 8, says it bothers her when her friends tease her brother. He can't help the way he acts, she says. Sayra, 11, says she admires a friend of hers who has a little sister she can dress up with. "My sister can't do that kind of stuff," she says, simply. Miles, 12, says his brother exhausts him. "He gets so hyper and he won't leave me alone." The workshops, called Sibshops, give kids a chance to have fun, talk and, sometimes, vent. Several of the kids, like Andrew, have been attending the workshops for years. "Life can be really difficult for a sibling of a child with special needs," says Robin Ryan of the WarmLine Family Resource Center, which puts on the workshops. "Sometimes it seems like all their parents' attention goes to their sibling." For a long time, Andrew doesn't say anything. But later, he talks about the incident at school. How, in the end, he told his father, who put a call in to the teacher. Andrew says the teacher was apologetic and didn't realize what he had said. "My dad said he was great on the phone, so it's over now," says Andrew. He then talks about how his brother can drive him crazy at times and how unpredictable his behavior is. "What can I say?" he says with a shrug. "He's unique." The other kids start laughing. They know exactly what he means.
It would be hard to find parents as devoted as David and Marianne Perez. David, a salesman for a company that sells copy machines, is warm and likable. Marianne is a stay-at-home mom with a dry sense of humor who has a seemingly endless supply of energy. They have positive, upbeat attitudes and their faces light up when they talk about their sons. But like many parents of children with special needs, the Perezes have learned to stretch themselves. David Perez does as much as he can for his sons, but he works full time and cannot be there for the boys as much as he would like. So Marianne Perez is Sammy's primary caregiver and advocate. For the past seven years, she has been challenging the medical establishment (and later, the school system) on behalf of her son. After years of searching for the right special-education program for Sammy, she thinks this year they finally found the right one. "We're cautiously optimistic," she says, crossing her fingers. But all the time she has spent researching programs and medical procedures for Sammy has taken time away from Andrew. "It's something we're very conscious of, especially now that he's a teenager. We know it can't all be about Sammy for him," says Marianne Perez. "Andrew has to have his own life."
That is already happening. Andrew is spending more time with his friends, developing his own interests, doing more things without his brother. He is a huge fan of "Weird Al" Yankovic and saw him twice in concert last year. He's on a swim team. Last year, he went to Ashland, Ore., with his English class. And last summer, his father took Andrew to Cabo San Lucas to get his scuba diving certificate. Like all teenagers, Andrew is taking those first tentative steps away from home.
If something should happen to them, David or Marianne Perez have arranged for relatives to take care of Sammy. But when you ask Andrew about his future, he'll say he wants to be a child psychiatrist. He then mentions his brother. "And, of course, I'll probably be taking care of Sammy," he says in a matter-of-fact voice. "Wait ... change that. I will be taking care of Sammy."
This story was excerpted directly from the FEAT (Families for Early Autism Treatment) online newsletter ... check out www.feat.org
Editor's Note
The next edition of our newsletter will be in mid-April, 2001. Please send submissions by March 31 to:
Barb Boiduk, Newsletter Editor
P.O. Box 997,
Amherst, NS B4H 4E1
Phone 667-8244 Fax 667-0585
Email: ceip@auracom.com
Early Intervention | Our Association | Resources | Help