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Archived Newsletters
October 1998
In this edition
Message from the Chairperson Memberhip Structure Upcoming Conferences Making Assessment a Family Affair The Importance of Family I'm Special Bill of Rights for Parents of Handicapped Children
FAMILY - What an idea !!
What a celebration !!
Why we do what we do ...
Why we are what we are ...
A Message from James Sanford
Chair of the Early Intervention Association of Nova Scotia
Early Intervention in Nova Scotia is a program that has made a positive contribution to many of our lives and touched us in different ways. Over the past three years (almost) our association has attempted to advocate for the provision and value of programs and services for children with special needs and their families.
This past May, EINS had an opportunity to join with other individuals and organizations to consider the need for a comprehensive support and advocacy network. Out of these initial discussions there has been an interest and belief that we need to advocate for more extensive support programs and increased awareness of the services that exist or should exist for people with special needs and their families.
Some of the challenges facing families range from respite/in-home support, speech and language interventions, physiotherapy, special education supports, access to Early Intervention services and recreation opportunities to Small Option Homes and the availability of services for children, youth and adults with special needs.
There is now an alliance that has formed to meet these needs. The success of these efforts will depend largely on our ability to facilitate groups and organizations working together. I want to encourage you to review the mission and goals of the Alliance and consider how you might be able to be involved.
Mission Statement - Community Special Needs Alliance (CSNA):
CSNA exists to provide an opportunity for individuals and community organizations to advocate collectively for appropriate support services on behalf of children, youth and adults with special needs and their families.
Goal Statements:
Advocacy:
- Increase/Improve regional representation when advocating for needed support services.
- Increase/Improve the ability of CSNA members to influence political decision making.
- Increase/Improve government (municipal/provincial) recognition of the necessity to support children, youth and adults with special needs and their families.
- Increase/Improve communication with Departments of Community Services, Health, and Education to ensure issues are addressed from a broad perspective.
- Increase/Improve opportunities to develop partnerships among various support agencies and organizations.
- Increase/Improve regional awareness of needed support services.
- Increase/Improve recognition of and opportunities to eliminate barriers to inclusive communities.
- Increase / Improve recognition that supports are part of a continuum of services.
- Increase/Improve communication among/between support organizations and families.
- Increase/Improve the sharing of information between support and government agencies and families.
- Increase/Improve identification of barriers that families with special needs face.
- Increase/Improve the collection and dissemination of information regarding services, programs and supports available to families with special needs in Nova Scotia.
I am pleased that EINS has had the opportunity to partner with the Institute for Early Childhood Education and Development Services and the Canadian Association for Young Children to present this exciting conference aimed at professionals, educators and parents.
That afternoon EINS will hold our Annual General Meeting so it will be an exciting day for our association. I also want to encourage individuals (especially parents) who are interested in joining the Board to attend. I hope the summer has been an enjoyable one for you and your family and friends. I know that the upcoming months will be exciting ones for EINS and the CSNA..
Yours respectfully,
James Sanford
Membership Structure
Our Annual General Meeting on October 24 will include important elections for new Board Members as several of our current members are resigning to concentrate on new challenges. Please consider whether you are able to support the cause of Early Intervention in Nova Scotia by submitting your name as a potential board member. Our membership structure follows:
Early Intervention Association of Nova Scotia
Membership Structure
General Membership
Early Intervention Programs - $25.00 / year
Interested / Associated Individuals - $5.00 / year
Board of Directors
11 members to be drawn from Early Intervention Programs
Board Members and/or Staff:
3 from Western Region
2 from Central Region
2 from Northern Region
2 from Eastern Region
Parents:
2 with childen currently in an EI program
4 members representing general membership at large
Provincial Program Specialist to sit as ex-officio
Term of Office three (3) years
Executive
Chairperson
Past Chairperson
Vice Chairperson
Secretary
Treasurer
Current Committees:
Public Relations / Fundraising
Advocacy
Professional Development
Membership
Membership Benefits
- Membership card
- Bi-yearly Newsletter
- Vote at Annual General Meeting
- Access to Program Libraries and Resources
- Association rates for EINS sponsered workshops and conferences
- Advocacy network for Early Intervention issues
Upcoming Workshops, Conferences and Other Opportunities
September 29, 1998
"Why Do They Do That?" Understanding Behavior in Autism - Assessment and Intervention Planning. Waterville, Nova Scotia. $75. 1-902-538-3103 for information.
October 17, 1998
Woozles 20th Birthday Party !! 1533 Birmingham Street, Halifax. 10:00 am
to 1:00 pm 1-902-423-7626 or http://www.woozles.com/ for information.
October 22 - 23, 1998
Ontario Association for Infant Development annual conference. Focus is on
attachment related disorders. Hamilton, Ontario. Information at
1-905-521-2100 ext. 7418.
October 23, 1998
"Autism - Support Through Education". Keynote address by Dr. Kim Ward of
Society for Treatment of Autism, Calgary, plus multiple workshops presented
by parents and professionals from the Atlantic Provinces. Amherst, Nova
Scotia. $20. 1-902-667-8244 for information.
October 23 - 24, 1998
"Charting a New Course" presented by IECEDS, EINS and CAYC. Fresh
approaches to meeting the needs of children. Truro, Nova Scotia.
1-902-893-3342 for information.
November 4 - 6, 1998
Geneva Centre for Autism, Toronto, Ontario. International Symposium on
Autism 1998. For information 1-416-504-4500 or www.autism.net
November 5, 1998
"Partners for Progress: Working with Your Community". White Point, Nova Scotia
For information 1-902-742-3541 ext.390 - Marilyn Pothier.
November 5 - 7, 1998
"Mega Bytes Mega Care". Family Service Canada national conference -
technology and the quality of life. Saint John, New Brunswick.
1-613-722-9006 for information.
November 18 - 21, 1998
National Association for the Education of Young Children Annual
International Conference. Toronto, Ontario. For information fax 1-202-797-1651 or email conference@naeyc.org
December 6 - 9, 1998
DEC International Early Childhood Conference on Children with Special Needs,
14th Annual. Chicago, Illinois. 1-407-628-3602 for information.
Tommy Smothers
Making Assessment A Family Affair
Over a half a million children in the United States are in early intervention programs. Even more are assessed each year. This assessment serves as a critical base for Individualized Family Service Plans (IFSP) that carry forward with the child.
Once the domain of a battery of health care and education professionals, the assessment process is changing to include parents and other family members. For many parents, this is a welcome relief. Encouraging this trend towards more parent collaboration, ZERO TO THREE: National (US) Center for Infants, Toddlers and Families has published a new assessment guide - New Visions For The Developmental Assessment Of Infants And Young Children. This soft covered book - the combined effort of a team of parents and professionals - promotes evaluation of children by their capabilities, rather than disabilities and understanding how children with disabilities manage life in the context of their families, communities and cultures. The following suggestions are equally applicable to assessments of children here in Canada.
New Visions recommends the following for a more accurate assessment:
- Young children should never be separated from parents or caregivers. Separation created anxiety; they should not be expected to perform well under those conditions.
- Young children should never be assessed by an examiner who they may have just met only minutes earlier.
- Formal tests should not be the base, but only one piece of the assessment. Most standardized tests are not designed to bring out the unique abilities of the children with atypical or challenging development patterns. Misleading scores can lead to an inappropriate IFSP and a basic misunderstanding of a child's abilities and needs.
- Assessments should not be limited to test results. Measures of motor or cognitive skills are not an accurate picture of total development capabilities. A complete assessment should reflect a parent's experience with a child and independent observations of child/parent.
New Visions also offers tips for parents when preparing for an assessment:
- Be the parent. Your expertise is knowing your child better than anyone else. Your gut feelings and personal observations count.
- You don't need to learn all the technical terms to contribute. These terms can be defined for you. Be comfortable using your terms to explain what is going on with your child. They will be understood by everyone.
- Don't be afraid to disagree. If professionals see your child differently than you, ask for more discussion. Accepting an assessment you feel inaccurately portrays your child is no use to you or the child.
- Designate an ally to bring to meetings. Because it can begin to feel overwhelming, bring a friend or family member along for support, to help take notes, keep track of information and review the discussion later.
- Understand that your level of involvement may vary. How involved you will be in each stage of the assessment process may depend on your child's needs, as well as other circumstances of daily life. Your decision to become more or less involved should be accepted by others concerned. Even if you are not always on hand, make it clear that you are to be alerted if needed or if circumstances during the assessment change.
- Make sure your needs are met. Spending valuable time and energy on a process that misses your concerns, delays your ability to help your child.
- Find support. Take care of yourself and your family.
- Share your knowledge with others. Parents just starting out on the path that you have already covered need your help.
The New Visions guide can be ordered from:
Zero To Three : National Center for Infants, Toddlers and Families
734 15th Street, N.W.
Washington, D.C. 20005 - 2101
toll free line for publications is 1-800-899-4301
www.zerotothree.org
All Those Years
My friend Debbie's two daughters were in high school when she experienced flu-like symptoms. Debbie visited her family doctor, who told her the flu bug had passed her by. Instead, she had been touched by the "love bug" and was now pregnant.
The birth of Tommy, a healthy, beautiful son, was an event for celebration, and as time went by, it seemed as though every day brought another reason to celebrate the gift of Tommy's life. He was sweet, thoughtful, fun-loving and a joy to be around.
One day when Tommy was about five years old, he and Debbie were driving to the neighbourhood mall. As in the way with children, out of nowhere, Tommy asked, "Mom, how old were you when I was born?"
"Thirty-six, Tommy. Why?" Debbie asked, wondering what his little mind was contemplating.
"What a shame!" Tommy responded.
"What do you mean?" Debbie inquired, more than a little puzzled. Looking at her with love-filled eyes, Tommy said, "Just think of all those years we didn't know each other."
Alice Collins in Chicken Soup for a Mother's soul
The Importance Of The Family
When a man and a woman come together in marriage, both change their lifestyles. When a child is added, the family needs to provide a mutually healthy,productive, nurturing environment. Every child comes into a family somewhat like a rock thrown into a pond. The ripples caused by the new arrival affects everyone and changes must be made to include the newest member. It is crucial for the family to meet the individual needs of all its members. All children have four basic needs.
- The need to belong. To love, share, and co-operate. Everybody needs friends, family and love.
- The need for power. Each of us strives for power and recognition. Each family member needs to have rights and privileges and the power to manipulate and control his environment.
- The need for freedom. All of us require the opportunity to make choices (e.g.. when to get up, what to wear, what to eat, etc.) and the opportunity to make mistakes. This allows us to develop into the unique individuals we are.
- The need for fun. Laughter and good fun are necessary ingredients for all families. All must take time to relax and enjoy family members, friends and peers.
This is equally true for children with a disability. However, he or she may have needs in addition to the four basic needs that require attention. He or she has the right to have these needs met within their family.
It is essential that these children be an integral part of their family enjoying equal status with siblings. They should not, however, become the central focus figure. This may require careful planning of the family's time, energy, and finances. However, when families work together in a healthy, supportive environment the possibilities are endless.
The family may face many challenges, but obstacles can be overcome. Families may require current information regarding the disability, guidance in accepting the child and promoting his potential, and support from their immediate family and the professional community. The degree to which the entire family commits itself to establishing a healthy, productive unit in which each member will grow, and the external support network that exists around the family will determine the level of success in obtaining the goals established.
An Early Intervention Program recognizes the need for all children to be an integral part of their family and realizes that families may need help in achieving this. We need to ensure that all families which encompass young children with special needs have access to and are aware of Early Intervention services in their own community.
- edited from material supplied by the Early Intervention program in St. John, N.B.
One person with a belief is equal to a force of ninety-nine who have only interest. - John Stuart Mill
We have a million opportunities a day to laugh at ourselves and only a few to laugh at others. Only a fool would choose the lesser when the greater is so present.
I'm Special
I'm special. In all the world there's nobody like me.Since the beginning of time, there has never been another person like me.
Nobody has my smile.
Nobody has my eyes, my nose, my hair, my hands, my voice.
I'm special.
No one can be found who has my handwriting.
Nobody anywhere has my tastes - for food or music or art.
No one sees things just as I do.
In all of time there's been no one who laughs like me, no one who cries like me.
And what makes me laugh and cry will never provoke identical laughter and tears from anybody else, ever.
No one reacts to any situation just as I would react.
I'm special.
I'm the only one in all of creation who has my set of abilities.
Oh, there will always be somebody who is better at one of the things I'm good at, but no one in the universe can reach the quality of my combination of talents, ideas, abilities and feelings.
Like a room full of musical instruments some may excel alone,
but none can match the symphony when all are played together.
I'm a symphony.
Through all of eternity no one will ever look, talk, think or do like me.
I'm special.
I'm rare.
And, in all rarity there is great value.
Because of my great rare value, I need not attempt to imitate others. I will accept - yes, celebrate - my differences.
I'm special.
And I'm beginning to realize it's no accident that I'm special.
I'm beginning to see that God made me special for a very special purpose.
He must have a job for me that no one else can do as well as I.
Out of all the billions of applicants, only one is qualified,
only one has the right combination of what it takes.
That one is me.
Because .................... I'm special.
by John McIndless from the Canadian Association for William's Syndrome
Summer 1998 Newsletter
Thanks to Carol Langille for sending this.
Nova Scotia director for the Canadian Association for William's Syndrome is
Colleen Jones
85 Lakeshine Crescent
Dartmouth, Nova Scotia
B2V 2N9
Bill of Rights for Parents of Handicapped Children
Excerpted from "A Survival Guide for People Who have Handicaps" by Sol Gordon, Director, Institute for Family Research and Education, Syracuse, N.Y.
Parents are acutely aware of their responsibilities to provide for their offspring but are seldom aware of the rights they also have as parents of a child who has a disability, and as just ordinary people.
Parents should have the freedom to:
- Feel that you have done the best you can.
- Enjoy life as intensely as possible, even though you have a child with a disability.
- Let your child have his or her own privacy.
- Have hostile thoughts once in a while without feeling guilty.
- Enjoy being alone at times.
- Say at times you don't want to talk about your problems.
- Don't be compelled to explain everything to everyone.
- Tell your child you don't like some things he says or does.
- Devote as much time as you want to the cause of your child's condition - to get away for a while, and return if you want.
- Tell teachers and other professionals what you really feel about the job they are doing. Demand they respect your opinions.
- Tell people about your child's progress and achievements with a real sense of pride.
- Spend a little extra money on yourself.
- Take a vacation yearly without the children, weekends away, time together to enhance your marriage.
Warning: Parents who do not enjoy almost all of these freedoms are in trouble. Martyred parents are seldom appreciated by anybody.
Welcome to a new EINS family member - born to EINS Board Member Sheri McGill (and her husband), a son, Aidan Charles O'Brien on May 30, 1998 - weighing in at 8 lb. 3 oz. (or approximately 3720 grams since we're supposed to be metric!) CONGRATULATIONS !!
Contributions to this newsletter are always welcome. Our next issue will be in early April. Please send contributions by March 15 to:
Barb Boiduk
EINS Newsletter Editor
PO Box 997
Amherst, Nova Scotia B4H 4E1
Phone 667-8244 Fax 667-0585
Email ceip@atcon.com
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