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Archived Newsletters
May 2001
In this edition
Welcome and greetings! What is EINS? Seven Habits of Highly Effective Advocates Where are the Vigils for Tracy Latimer? The Blessing Happy Mother's Day all year long ... Dilbert's Rules of Order We Should All Be This 'Disabled' Canadian Policy Research Network What We Owe To Ourselves and Each Other Things you really wish you'd thought of first Professional Development Opportunities NoticesI'm putting this together on the Easter weekend and still looking out my study window at several feet of snow and, yes, it's snowing again! But I know that somewhere out there are tulips and rose bushes, peonies and creeping thyme ... and so faith must win out as we wait for spring to truly arrive!
This is likely my last newsletter as Chair of our Early Intervention Association of Nova Scotia ... I hope to pass the honour along to new hands at our AGM (date to be determined, likely in June, and we would have set that at our last EINS Board meeting, but, like so much this year, it got snowed out!). I need to move on with my studies (I'm working myself up for thesis research on the strengths and challenges of delivering family-centered service in rural communities) and other ongoing projects (some of which only exist in my head, but stay tuned!!). However, I suspect that my generous friends in our Association will allow me to continue as newsletter editor and thus this won't be the last you hear from me. Let's say there hasn't been a line-up for the job, and I do enjoy producing this even when finding time is sometimes a challenge!
We have had a very productive 2001 so far. Early Intervention week was declared from February 18 to 24, 2001 with public proclamations signed by NS Premier John Hamm, Minister of Community Services Peter Christie and our very own Rory Arcon!! Our new EINS logo was launched in the Chronicle Herald and appeared province-wide on the most beautiful ever Scotsburn milk cartons (and we will be eternally grateful to Scotsburn Dairy for that support!). Our service was featured on Live At Five with Dr. AJ early in February (thanks to Caroline Gallop of the Sackville Bedford program, the wonderful family she featured and Dr. Sarah Shea at the IWK) and on Maritime Noon later in the month (thanks to Valerie Donovan of the Allkids program in Glace Bay and the also wonderful family who shared their story on air). Great job PR Committee (Kim, Mark and Christine!!)!!
Meetings and discussion to further our role as a key community partner in the National Centre of Excellence for Children and Adolescents with Special Needs have continued. This is a five year project and we are very much feeling our way along with Mount Saint Vincent University researchers and partners from other NS community organizations. This Centre along with four others are being funded through Health Canada. Lakehead University is the administrative partner for our Centre and other partners include the Government of Nunavit, University of Northern BC and Memorial University in Newfoundland so you can imagine that establishing lines of communication, organizing coordinated research efforts and delineating directions for the five years has not been the easiest task. However, Mount Saint Vincent University has been designated the task force to examine "Early Intervention for Special Needs" and this builds very nicely on our own professional goal to establish research into ‘Best Practices' as defined at our excellent visioning exercise conducted last April. I think this is only the beginning of an interesting journey for us all as Interventionists and Early Intervention supporters. Many of us will be contributing to the research efforts and I hope that all of us will benefit ... and none so greatly as the families we serve. Check out http://www.hc-sc.gc.ca/hppb/childhood-youth/centres/e_special.html for ongoing details as plans and actual research develop.
Next newsletter will be mid-October. Please send submissions by September 30th to:
Barb Boiduk, Newsletter Editor
P.O. Box 997
Amherst, Nova Scotia B4H 4E1
Phone 667-8244 Fax 667-0585
Email ceip@auracom.com
What is EINS?
Your servant, as ever ...
For those of you new to our Association and/or not actively involved in our day to day workings, I thought I would include some background information on our mission, goals and membership. If this piques your interest and you would like to be more involved we always welcome new members and will be looking for parents, Interventionists and other interested Early Intervention supporters to fill Board of Director vacancies at our upcoming Annual General Meeting. Please call (667-8244) or email (ceip@auracom.com) after April 21st for details regarding date and location for the AGM.
The Early Intervention Association of Nova Scotia (EINS) is the representative body for Early Intervention programs, staff, board members, families and all other individuals interested in Early Intervention services in Nova Scotia. Our mission states: The Early Intervention Association of Nova Scotia exists as an organization to advocate for and increase awareness of Early Intervention in the community. The Association promotes personal and professional development to support infants and children with special needs and their families.
Our goals center around the following nine statements in three areas :
Advocacy:
• Increase / improve awareness of the value of Early Intervention.
• Increase / improve the ability to influence political decision making.
• Increase representation / communication with other public agencies.
Awareness:
• Increase / improve awareness of Early Intervention for community groups / agencies.
• Increase awareness of EINS by parents.
• Increase / improve promotion opportunities for Early Intervention and EINS.
• Increase / improve awareness of Early Intervention with government at all levels.
Personal and Professional Development:
• Increase awareness of trends and issues affecting Early Intervention.
• Increase awareness of available professional development / training opportunities.
Membership in the Early Intervention Association of Nova Scotia is diverse and open to employees and board members of Early Intervention programs, parents of children with special needs, professionals and organizations who work with children and their families, individuals involved in training Early Intervention personnel, corporate supporters and representatives from interested community groups and other interested people. Membership costs are $5 for individuals, $25 for programs or organizations and $100 for corporate membership. Our corporate sponsors, and we sincerely thank them, are the IWK Grace Health Centre and the Nova Scotia Truckers Association.
The Board of Directors has a maximum of 17 members. The membership structure for the EINS Board of Directors designates that 11 members will be volunteers (board members) or staff associated with Early Intervention programs across the province (3 from the Western Region, 2 from Central, 2 from Northern and 2 from Eastern), 2 members shall be parents whose family is currently being served by an Early Intervention program and 4 members shall represent general membership at large. The Program Administrative Officer for Early Intervention at the Department of Community Services (currently Nancy Taylor) sits on the Board as ex-officio.
The Board has standing committees for Advocacy, PR and Fundraising, Professional Development, Membership and for Research and Policy Development. The Board meets approximately 4 times per year in Truro. We always welcome your comments, questions and interest!!
Seven Habits of Highly Effective Advocates
by Shelley Asserson, reprinted with permission from CDSS Quarterly 13: 4
1. Connect with other parents
From my experience, parents who have ‘been there' provide the best support and most practical information to other parents of children with special needs. Connecting with other parents, either one-on-one or in a support group, provides a safe environment to express our innermost feelings, and to share information about community resources, the rights of those with disabilities, and ideas and solutions to practical problems.
2. Become informed
You are the most important person in your child's life and his or her greatest advocate. You are motivated by love. Learn as much as you can about your child's condition, syndrome or special need. Ask questions of other parents and professionals and exhaust the resources available to you. When you are aware of all the options available, you can make informed decisions that will best meet the needs of your child and your family.
3. Get organized
We'd all love to have someone who will coordinate all the appointments, keep track of all the information and ensure that all the key sectors and jurisdictions are involved and informed. But, the reality is that most of us must take on the role of our child's ‘case manager' or ‘key coordinator.' To make this task as easy as possible, learn to keep records of appointments, phone calls, etc. Make notes ahead of time about questions you want to ask and take notes while you are there. In some situations, you may want to take another person to ensure that you don't forget any vital points, or just to be another set of ears, e.g., "Is this what you heard them say?"
Request that you receive a copy of any correspondence - remember that you are an important member of the ‘team.' Don't assume that you will be included on the circulation list just because you attended the meeting.
Follow up on meetings by writing a letter stating your understanding of the outcome, e.g., "It was my understanding that Paul will have a part-time aid for the school year, and that this will be reviewed again in one year's time unless any member of the team feels it needs to be discussed sooner." Ask that you receive confirmation in writing.
4. Get involved
When our children are very young, we tend to concentrate on their individual needs and our advocacy efforts often focus on securing these needs. Some of us will continue to advocate for our child alone while others will get more involved in ‘the big picture.' It took me a number of years to recognize and respect that parents have different approaches and that what works for one parent may not work for another - or may work for the other in the future. It is also true that we may be dealing with our own child's immediate needs while at the same time getting involved on a broader scale.
There are endless opportunities to get involved in committees, parent support groups and other organizations serving children with special needs and their families. Start small by attending meetings and then, as you become more familiar with the bigger issues, take on roles with more responsibility.
It's important to note that the families who work to meet their own child's needs may reap the immediate rewards of their efforts. But for those who advocate for all children, the rewards may come years later, when their own child can no longer benefit. Both are worth it! Remember that the services we have today are largely due to the efforts of parents who advocated before us.
5. Become assertive
There's a big difference between a parent who is assertive and one who is aggressive in behaviour. I've worn both hats at various times and, from experience, I've learned that assertive is the most effective. Becoming informed about your child's needs, and your rights and responsibilities, helps develop confidence. I have also learned that the special needs community is relatively small - be aware that the people you are in contact with today will inevitably reappear in the future. Building on a positive relationship makes everyone's job easier.
6. Plan for the future
Dare to dream! Above all, we need to have hopes and expectations for all our children. Things that seemed impossible before are reality now.
Be prepared. Our kids with special needs go through transitions too, for example, from childhood through school. Know that there are resources to support you.
Get your will in order. At some point, we all wonder ‘what will happen when I'm gone?' but many of us procrastinate writing a will. Some parents are fortunate to have immediate family and friends who will respect their wishes and look after the interests of their child with special needs. Others are not so fortunate. The last thing we want is to have our son's or daughter's future determined by a public guardian who may have no idea about our family's beliefs or values.
7. Believe you can make a difference
There are many barriers to inclusion of children with special needs; some are physical, but the greatest barrier to inclusion is attitude. Changing attitudes is a slow process and works best when everyone is involved - not just families or the ‘converted' - but the whole community.
Start by identifying the issues and the deciding some priorities. Don't take on the most difficult or challenging issue first. Instead, build on small successes one step at a time.
Where are the Vigils for Tracy Latimer?
Canadians, for the most part, have formed some personal opinion regarding the "Robert Latimer" conviction and the issues it has raised. We now see concern across the country about the fairness of the decision and recent declared advocacy efforts, including petitions and vigils, to change laws to recognize 'mercy killing' or extenuating circumstances. We applaud anyone who seeks change and understanding on any issue through advocacy. We need more people willing to step up and seek change on many issues in Nova Scotia and across Canada. However, we would like to express our concern with this particular advocacy issue. Robert Latimer, in whatever way you wish to phrase it killed his daughter, Tracy. The single identified reason was to end her suffering and pain. Was her pain physical, or also the pain of a child who could not express or communicate herself clearly to those she loved? The Latimer family are the only ones who truly know the answer.
Was the pain in this case more the pain of Robert Latimer himself who was no longer able to cope with the day to day challenges of Tracy's life? That is not unusual. Many families struggle to cope with the challenges presented by a child or adult family member with a disability. If Robert Latimer sought to relieve his own pain then he should be willing to identify that as the true mitigating circumstance and accept responsibility for that decision.
How was a man who professed so much love for and commitment to his daughter, who provided so much support to her in life, able to leave her so very alone in death? Was he afraid to join her in that journey? Or was that journey meant to end his pain and suffering?
The real issue requiring advocacy is how families can feel so ignored, unsupported or desperate that they feel the need to face such agonizing decisions alone, whether the pain and suffering is that of a disabled person or a family member.
We challenge all Canadians who are willing to seek change by recognizing the family needs Robert Latimer's actions represent, to show even more commitment in seeking change to recognize the needs of the disabled that Tracy Latimer's death represents.
Every child, youth and adult who struggles with, and challenges, a disability on a daily basis, needs as much advocacy for the opportunity and supports to live a fulfilling and good life as they do opportunities that allow someone else the right to end.
Have a moment of mercy and forgiveness for Robert Latimer, but please show a lifetime of respect for Tracy Latimer and those in our communities she represents.
James and Darlene Sanford
Falmouth, Nova Scotia
The Blessing
The man whispered, "God, speak to me." and a meadowlark sang.
But, the man did not hear.
So the man yelled "God, speak to me." and the thunder rolled across the sky.
But, the man did not listen.
The man looked around and said, "God let me see you." and a star shone brightly.
But the man did not notice.
And, the man shouted, "God show me a miracle." and a life was born.
But, the man did not know.
So, the man cried out in despair, "Touch me God, and let me know you are here."
Whereupon, God reached down and touched the man.
But, the man brushed the butterfly away and walked on.
Don't miss out on a blessing because it isn't packaged the way that you expect.
This is for ALL the Mothers ... Happy Mother's Day all year long ...
This is for all the mothers at football games Friday night sitting on cold bleachers instead of watching from cars, so that when their kids asked, "Did you see me?" they could say, "Of course, I wouldn't have missed it for the world," and mean it.
This is for all the mothers who have sat up all night with sick toddlers in their arms, wiping up barf laced with Oscar Mayer wieners and cherry Kool-Aid saying, "It's OK honey, Mommy's here."
This is for all the mothers of Kosovo who fled in the night and can't find their children.
This is for the mothers who gave birth to babies they'll never see. And the mothers who took those babies and gave them homes.
For all the mothers of the victims of the Colorado shooting, and the mothers of the murderers. For the mothers of the survivors, and the mothers who sat in front of their TVs in horror, hugging their child who just came home from school, safely.
For all the mothers who run carpools and make cookies and sew Halloween costumes. And all the mothers who DON'T.
What makes a good Mother anyway? Is it patience? Compassion? The ability to nurse a baby, cook dinner, and sew a button on a shirt, all at the same time?
Or is it heart? Is it the ache you feel when you watch your son or daughter disappear down the street, walking to school alone for the very first time? The jolt that takes you from sleep to dread, from bed to crib at 2 A.M. to put your hand on the back of a sleeping baby? The need to flee from wherever you are and hug your child when you hear news of a school shooting, a fire, a car accident, a baby dying?
So this is for all the mothers who sat down with their children and explained all about making babies. And for all the mother who wanted to but just couldn't. This is for reading "Goodnight, Moon" twice a night for a year. And then reading it again. "Just one more time."
This is for all the mothers who mess up. Who yell at their kids in the grocery store and swat them in despair and stomp their feet like a tired 2-year old who wants ice cream before dinner.
This is for all the mothers who taught their daughters to tie their shoelaces before they started school. And for all the mothers who opted for Velcro instead.
For all the mothers who bite their lips - sometimes until they bleed - when their 14 year olds dye their hair green. Who lock themselves in the bathroom when babies keep crying and won't stop.
This is for all the mothers who teach their sons to cook and their daughters to sink a jump shot.
This is for all mothers whose heads turn automatically when a little voice calls "Mom?" in a crowd, even though they know their own off spring are at home.
This is for mothers who put pinwheels and teddy bears on their children's graves.
This is for mothers whose children have gone astray, who can't find the words to reach them.
This is for all the mothers who sent their sons to school with stomach-aches, assuring them they'd be just FINE once they got there, only to get calls from the school nurse an hour later asking them to please pick them up. Right away.
This is for young mothers stumbling through diaper changes and sleep deprivation. And mature mothers learning to let go. For working mothers and stay-at-home mothers. Single mothers and married mothers. Mothers with money, mothers without.
This is for you all. So hang in there. Please pass along to all the moms in your life.
"Home is what catches you when we fall - and we all fall."
Dilbert's Rules Of Order
- I can only please one person per day. Today is not your day. Tomorrow is not looking good either.
- I love deadlines. I especially like the whooshing sound they make as they go flying by.
- Tell me what you need, and I'll tell you how to get along without it.
- Accept that some days you are the pigeon and some days the statue.
- Needing someone is like needing a parachute. If he isn't there the first time, chances are won't be needing him again.
- I don't have an attitude problem, you have a perception problem.
- Last night I lay in bed looking up at the stars in the sky, and I thought to myself, where heck is the ceiling?
- My reality check bounced.
- On the keyboard of life, always keep one finger on the escape key.
- I don't suffer from stress. I am a carrier.
- You are slower than a herd of turtles stampeding through peanut butter.
- Meddle not in the affairs of dragons, for thou art crunchy and taste good with ketchup.
- Everybody is somebody else's weirdo.
- Never argue with an idiot. They drag you down to their level, then beat you with experience.
- A pat on the back is only a few centimeters from a kick in the butt.
- Don't be irreplaceable - if you can't be replaced, you can't be promoted.
- After any salary raise, you will have less money at the end of the month than you did before.
- The more crap you put up with, the more crap you are going to get.
- You can go anywhere you want if you look serious and carry a clipboard.
- Eat one live toad the first thing in the morning and nothing worse will happen to you the of the day.
- If it wasn't for the last minute, nothing would get done.
- When you don't know what to do, walk fast and look worried.
- Following the rules will not get the job done.
- When confronted by a difficult problem, you can solve it more easily by reducing it to question, "How would the Lone Ranger handle this?"
We Should All Be This 'Disabled'
Several years ago at the Seattle Special Olympics, nine physically and mentally disabled contestants lined up at the starting line for the 100-yard dash. At the sound of the gun, they all started out - not exactly in a dash, but with the relish to run the race to the finish and win.
The kids all started out, except one - a boy who stumbled, tumbled, and began to cry. The other eight, hearing the boy's cries, slowed down, paused, circled around, and hurried back to help. Every one.
One girl with Down Syndrome bent down and kissed the boy and said, "This will make it all better." Then all nine linked arms and walked together to the finish line.
Thank you to Valerie from Yarmouth for the above from the 2001 Hope Health Calendar (Hope Heart Institute, Seattle, Washington)
Canadian Policy Research Network
The following excerpt is from the Canadian Policy Research Network e-network newsletter:
As Early Intervention practitioners and supporters much of what we advocate for on behalf of families that encompass children with special needs hinges on social policy which delineates what we have a right to expect as a part of our society and what we owe in return. It is important to be well informed and to participate knowledgeably in discussions that influence policy in order to ensure that our social policy does support the growth of strong inclusive communities in which ALL our children can grow and thrive.
The mission of the Canadian Policy Research Network is to create knowledge and lead public debate on social and economic issues important to the well-being of Canadians. Their goal is to help make Canada a more just, prosperous and caring society.
Their website can be accessed at www.cprn.org.
What We Owe To Ourselves and Each Other
"The democratic state is, ideally, the embodiment of our collective will. The idea of a 'social contract' is to capture at a particular time society's notion of the respective responsibilities of the citizen and the state. Just where do we draw the line between our responsibility for ourselves and our responsibility for each other? What does each of us have a right to expect of society as a whole, and what is our commitment in return?
The answers to these questions help define what it means to be a Canadian, or a citizen of Ontario, Alberta or Nova Scotia, or perhaps even what it means to be a member of a specific city or community. Seen in this light, the major changes to social programs in the 80s and 90s, for example, in effect rewrote the social contract, albeit without a great deal of public debate over the implications for our notions of individual and collective responsibility.
With the fiscal crisis behind us and the prospect of better economic times ahead, it is a good time to assess whether we think the current balance of responsibility implicit in our social policies is appropriate. Such an inquiry may find some of our social policies demand too much of the individual, while others demand too much of the collective, but the idea that social policy should be run through the sieve of our social values is an important one."
Things you really wish you'd thought of first:
We could learn a lot from crayons: some are sharp, some are pretty, some are dull, some have weird names, and all are different colors ... but they all have to learn to live in the same box.
Birthdays are good for you; the more you have, the longer you live.
If ignorance is bliss, why aren't more people happy?
Most of us go to our grave with our music still inside of us.
If Wal-Mart is lowering prices every day, how come nothing is free yet?
To the world you may be only one person, but to one person you may be the world.
Happiness comes through doors you didn't even know you left open.
Don't cry because it's over; smile because it happened.
The Following Professional Development Opportunities are Brought to Your Attention:
| May 4 and 5, 2001 Evaluation and Treatment of Oral Feeding Disorders in the NICU and After Discharge. IWK Grace, Halifax. 428-8729. |
| May 10 and 11, 2001 EINS Retreat for Early Intervention personnel, Tatamagouche, NS. More details will be mailed out to you soon from the PD Committee but please do reserve those dates and plan to join us. |
| June 7, 2001 Meeting The Challenge: Effective Strategies for Challenging Behaviors in Early Childhood. New Minas, NS. 678-5110. |
| June 21 and 22, 2001 Linda Pletcher presentation on Family-Centered Service Delivery. Details to follow from Admin Officer Nancy Taylor. 424-6286. |
| July 9 to 20, 2001 The Atlantic Summer School for Care Givers and Educators at the IECEDS in Truro. Week one focuses on Methods in Child and Youth Guidance, week two on Music Experiences for Young Children, also non-credit programs in True Colors, First Aid, Behavior management, Non-Violent Crisis Intervention. Truro, NS. 893-3342. |
| Sept. 27 to 29, 2001 National Conference on Learning Disabilities, Halifax, NS. Presented by the Learning Disabilities Association of NS. 423-2850 |
Notices and For Your Attention:
On Friday June 22, 2001 IECEDS in Truro will be celebrating 25 Years of Advocating Change Through Education. An Open House, Alumni Tea and Celebratory Dinner are scheduled. Phone (902) 893-3342 or email admin@ieceds.ns.ca for info or tickets. EINS congratulates the Institute on this momentous occasion!!
Our sympathy is extended to Colchester Early Intervention Coordinator Ronda Bagnell following the death of her dear husband, John, in January. You have our hearts and our thoughts Ronda ...
EINS has recently been informed that our application to the IWK Grace Health Centre Foundation for an External Grant to create an Informational Video was successful. Now we really have some work to do and will be looking for your assistance as this project unfolds!!
Congratulations is extended to Annapolis Early Intervention Coordinator Jill Piers and her husband on the safe arrival of baby John Walter on December 28, 2000, weighing in at 7 pounds, 5 ounces. Watch for several more announcements in the fall newsletter!!
The NS Human Rights Commission is holding consultations across the province to review their roles and responsibilities. A discussion paper for background is available at all public libraries or online at www.gov.ns.ca/humanrights/ and you can call 1-800-273-0041 or email hrcinquiries@gov.ns.ca to comment or to obtain the schedule of public meetings. This is an important opportunity for input to represent the inclusiveness of human rights policy for ALL individuals in Nova Scotia.
And check out www.specialinkcanada.org for info on a report entitled A Matter of Urgency, Including Children with Special Needs in Child Care in Canada.
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