Blogs & Media

A collection of blogs we find interesting, and NSDSS letters, responses, press releases, and articles.

Blogs

Adoption as an option!

Ups and Downs: experiences and opinions of Alice, a new mom

Team Possibles – young persons and artists living with Down syndrome (NEW LINK!)

News
March 15, 2010

Dear Parents,

The Canadian Early Intervention Research Team needs your HELP!!

We are conducting a national study on the experiences and perceptions of parents of children with special needs in Early Intervention across Canada. We have constructed a survey that is being distributed to parents from across the country to determine how parents perceive services and supports in each respective province or territory.

The survey takes 15-25 minutes to complete and is available online at:
http://www.zapsurvey.com/Survey.aspx?id=e09fe4d1-7ff6-4926-b55a-1c88deb7a4f0
(English)
http://www.zapsurvey.com/Survey.aspx?id=6b0a779a-fcea-462f-b828-c773b44e2c4d
(Francais)

Please note, if you chose to complete the survey using the link above, the survey must be completed and submitted online at one sitting (i.e., you can not return to complete the survey at a later time).

Alternatively, the survey can be emailed or faxed to you or administered over the telephone by contacting the primary research associate, Jennifer Saracino at jennifer.saracino@mail.mcgill.ca or (905) 592-1523. Please feel free to email Jennifer a number and time when you can be reached if your preference is to complete the questionnaire over the phone.

In exchange for your participation, you will receive an extensive report on the services and experiences of other parents across Canada along with any additional resources that are compiled by the research team.

Sincerely,

Primary Investigator, Ingrid E. Sladeczek, PhD
School/Applied Child Psychology Program
McGill University
Phone: (514) 398-3450 Fax: (514) 398-6968
Email: ingrid.sladeczek@mcgill.ca
www.earlyinterventioncanada.com

Participant Recruitment For Speech Studies

The School of Human Communication Disorders, Dalhousie University, is looking for participants for speech studies in children with Down syndrome

1. Parent-implemented program that teaches speech sounds to children with Down syndrome

2. Bilingualism/Monolingualism in children with Down syndrome

Petition ‘Canada needs a prenatal diagnosis awareness act’
Since February 2007, all pregnant women in Nova Scotia have been offered prenatal screening by the province. These screening tests are not designed to treat any condition, but are aimed at preventing conditions such as Down syndrome, by preventing the birth of babies with this condition. In Canada over 90% of parents terminate a pregnancy when faced with a diagnosis of Down syndrome. The Nova Scotia Down Syndrome Society has experienced a sharp reduction (of about 85%) in registrations of new families during 2007.

The recent expansion of prenatal screening has not been accompanied by an appropriate expansion of counseling, information and education programs and is leading to unjustifiable situations. As an organization, the Nova Scotia Down Syndrome Society believes that non-directive and balanced information about all options should be at the heart of prenatal screening.

NSDSS has created an online petition to call for a ‘Prenatal Diagnosed Condition Awareness Act’. This Act will ensure prospective parents receive non-directive and balanced support and information about the diagnosed condition of their child. This could include experiences from persons living with Down syndrome and their families.

Please sign our petition and forward this message to everyone who might be interested because every signature counts!
Renate’s Article “Take Down Syndrome out of the Abortion Debate”
January 2008, Daily News: ‘Advocates: Potential parents need more info’

January 2008, Ottawa Citizen: ‘A Life Worth Living’

Document
November 2007, Halifax Commoner, Page 14: ‘Prenatal screening or genetic weeding?’

November 2007, Nova News Net: ‘Ethical Debate Needed on Down syndrome’.

November 2007, Toronto Star: ‘Discovering a World of Hope’.

September 2007, Community Living Ontario: ‘Mother sees bright future for daughters with Down syndrome’.

September 2007, Community Living Ontario: ‘Mom starts petition to better educate parents who have prenatal diagnosis of Down syndrome’.

August 2007, Chronicle Herald: ‘Don’t count Down babies out in womb’

May 2007, Chronicle Herald: ‘Response to Globe&Mail article “Doomed from Birth to Death””

February 2007, Chronicle Herald: ‘Why has Down syndrome become so undesirable?’

Document
November 2006; Chronicle Herald, Lives worth Celebrating

Media Releases

January 2008, ‘Registration of newborns with NSDSS falls with 85% since expansion of prenatal screening program’

November 2007, ‘Vanishing Canadians’

Letters

Document
January 2008, Request to Sick Children’s hospital to change offensive language about Down syndrome
Document
January 2008, Petition presented to Minister of Health Nova Scotia
Document
August 2007, Complaint CBC – re. Answer CBC
Document
July 2007, Answer CBC – re. Complaint
Document
July 2007, Complaint CBC – re. News Show July 22
Document
March 2007, P. MacKay: please sign the UN Convention on Rights of Persons with Disabilities
Document
January 2007, Minister of DCS Judy Streatch: Rights of adults with special needs in Nova Scotia – Housing issue
Document
September 2006, Minister of DCS Judy Streatch: Please address declining services for children with DS in Nova Scotia

Calendar

NSDSS Walk with Friends, Fundraiser Event
October 23, 2010
Meet at Victoria Park, Halifax. Walk around the Halifax Public Gardens.
Click here to download a 8.5 x11″ poster for the event
Click here to download a pledge form.

Members Page

News and information by and for our members

Down Syndrome Families of Antigonish is a group of families who network through the computer and meet monthly to discuss common issues and share information and resources. We also plan to have presentations from local specialists and will have social gatherings as well.

This group is the result of much time and effort on the part of Vanessa Carr, who, after giving birth to her son Jonah, was surprised to learn that there was no such group in the Antigonish area.

Since September 2009, we have had all of our meetings at Kids First, who so kindly opened their facility to our group and we enjoy the assistance of Emma, who plays with our children while we are meeting. So, the kids get to have their own social get together while we meet.

Our topics of disscussion have included vitamin therapy (Nutrichem’s MSB), Love and Learning (a reading and speech learning program), various web-sites specific to special needs and Down Syndrome and of course lots of casual discussion about our experiences.

Everyone is enjoying the connections we are making and the information we are gaining through this group. It’s something to look forward to each month.

Sincerly,

Valerie Bailey (member of DSFA)

RESPITE SERVICES

The Respite Programs in Nova Scotia assist families in planning relief care for their child with special needs while facilitating a positive and rewarding experience for their child. Some families may receive funding through the Direct Family Support Program of the Department of Community Services to hire a Respite Worker. Please contact the Repsite Coordinator in your area for specific information on their programs or visit www.respite.ns.ca and click on the link for your area.

Northern Region Respite Services
Coordinator: Sheri Scott
Phone: 902-752-1755

Central Region Respite Services
Coordinator: Bill Thompson
Phone: 902-463-4219

Western Region Respite Services
Coordinator: Tonya Comeau
Phone: 902-742-5543

Eastern Region Respite Services
Coordinator: Anna Burke
Phone: 902-539-6685

A message from one of our members: Jill Hicks, Speech-Language Pathologist

Life sometimes takes us on unexpected journeys. I had been a speech-language pathologist for 15 years when I had a beautiful baby girl. When she was three weeks old we learned there was a possibility our baby Hannah had Down syndrome; a blood test confirmed trisomy 21.

The main thing I have learned over the past eight years of Hannah’s life is that having Hannah is one of the biggest blessings in my life. I celebrate who she is and feel privileged to have been chosen to be her mother.

Hannah has shown me that children with Down syndrome can and do learn lots and lots of things. However, we need to be more patient, more intentional about breaking big tasks into smaller steps, and take the time to present things in a way that optimizes learning.

Having Hannah gave me a reason to ‘go the extra mile’ and look for ways to help her succeed. I have learned to take Hannah’s strengths and weaknesses into account when I teach her. Very early on I realized Hannah would need more explicit teaching to learn about sounds for speech and reading. That’s when I developed Phoneme Touch & Say. Hannah learned the Phoneme Touch & Say hand cues easily and has used them ever since to make sense of sounds in words.

While it is true that speech and language difficulties are pretty well universal for children with Down syndrome, the good news is that the vast majority of children with Down syndrome do learn to speak and read. Specialized teaching that focuses on sounds helps children with Down syndrome learn not only to speak more clearly but it helps them learn about language (vocabulary and grammar) and how sounds are related to letters for reading and spelling.

I have had the opportunity to work with several children with Down syndrome in my private speech-language pathology practice, and in the school system. When children are taught in a specialized way to meet their learning style, and when they can practice skills on a daily basis, they make the biggest gains. It has been exciting to see children with Down syndrome learn to pronounce a certain sound for the first time, learn the sounds letters make for the first time, and learn to spell for the first time.

Optimum learning depends on a willingness of the adults in the child’s environment to match their teaching practices to individual needs, and to have expectations that the student can and will learn and make progress. Our children with Down syndrome need us to love them by accepting them unconditionally but also by challenging them to try, and to learn.

I invite you to visit my website where you can see a variety of materials that I have developed to optimize success. These materials are all appropriate for children with Down syndrome (at varying ages and stages).

Perhaps you have previously attended one of my workshops: ‘Teaching Students with Down Syndrome’ or ‘Phoneme Touch & Say’. Please visit my website at www.learninglanguagetogether.com for details about upcoming workshops. If you would like me to present a workshop for your school or organization, please contact me at slp@learninglanguagetogether.com.

Jill Hicks, M.Sc., Speech-Language Pathologist, Berwick NS

Teen & YA page

FRIDAY NIGHT SOCIALS 6:30pm – 9:00pm at Chocolate Lake centre, 14 Purcell’s Cove Rd., Halifax. New members are welcome; it is drop-in, but we would like to have some information about you. If you decide to drop in, please fill in our registration form on the spot or contact Audrey to have a form emailed to you.

TEAM POSSIBLES is a group of young people and artists living with Down syndrome who met on Saturdays at Chocolate Lake centre, 14 Purcell’s Cove Rd., Halifax to talk and create art work about their dreams and future plans. If you are interested in becoming part of the Team, please contact Renee.

TEAM POSSIBLES BLOG – Painted Puppet Theatre (with links to all Team Possibles previous Blogs) http://teampossiblespaintedtheatre.blogspot.com/

Please note that the Team Possibles and Friday Night Socials are entirely parent organized and run programs, therefore NSDSS cannot accept any responsibility in respect to any type of loss, damage or injury that may occur as a result from these programs.

Here are a few quotes collected by Emily, one of our valued volunteers, who interviewed the young people who make up ‘the Possibles’

‘It’s really fun to have Down syndrome. You get to do things that other people can’t do. Like not drive. (You like that?) Yes. Because driving is bad for the world, it’s air pollution.’ Max, 19

The Possibles is a good chance and opportunity for other kids with Down Syndrome to come out and have fun. Some people don’t really have that many friends – they should come and meet some friends because it’d be really nice to see some smiles on their faces.’ Erin, 15

I think Down Syndrome is great. Lots of partying. Down Syndrome is great because you go to new places, like down south, up north. The Possibles is like a castle of heaven. This is like the kingdom of heaven; this is utopia, heaven on earth. Andrew, 20

I like taking pictures. And I like being in the pictures.
I like parties
We did Erin’s birthday and Halloween.
We watched a movie, and it was called Freedom Writers
The best stuff. Eduardo, 14:

The Possibles rock!
Why should there be more Possibles sessions?
It’s coming great… I know it.
It’s changed around… I’ve changed – I cut my hair.
Karsen, 17

Teen Possibles is fun.
I come here, I want to.
I like girls, and movies. I liked being the director; I like taking pictures.
Why should there be more Possibles sessions?
Because I be good – I may get married!
Do you think you might meet someone here?
Yes! Dylan, 14

Andrew (as the bride, below): Treat women equally

This project has been generously supported through the Nova Scotia Government’s Cutural Activities Program, Dalhousie Health Sciences student fundraiser and NSDSS.

Thank you ‘Possibles’ for showing anything is possible, thank you volunteers and program leaders.

www.cdssvoices.ca
Voices is the first Canadian magazine written for and by people with Down syndrome. In this magazine you will find stories about jobs, health and movies, along with informationon advocacy and mentoring.

The CDSS Voices At The Table Advocacy (VATTA) Committee shows true self-advocacy with this magazine.

To subscribe, get involved or to send an uplifting article, send an email to: voices@cdss.ca.

“Thanks A Bunch” postcards, created by Cape Breton artist Adele, now for sale at NSDSS

The cards are a wonderful way to say “Thanks” to all the special people in your life and raise awareness at the same time.

Folded cards plus envelopes, blank inside, prices:

1 card $1,75 each
10 cards or more $1,25 each
20 cards or more $1,00 each
To download your order form click on the picture left.

Adele and “Cabot Trail”
A little about Adele, the artist. She was born in Glace Bay, C.B. in 1977. Graduated from High School in 1997. Besides painting Adele has many other interest and hobbies and is always willing to try something new. Swimming and bowling are her favorite sports; she swims on the team of the Special Olympics, bowls in 2 bowling leagues, plus she is active in Aerobics.
Adele has many other interests like tole painting, country music, piano, step & modern dance and reading. She has also taken lessons in sign language and completed a First Aid & CPR course. Adele is active in her local Down Syndrome Society, loves her church, where she also has Bible study weekly.
In March 2002 Adele appeared in a CBC documentary “Measuring Up”. Over the last 4 years Adele has taken courses at UCCB. To name a few: Communications, Interpersonal relations, Public speaking, Celtic studies and Drama. In Fall 2004 Adele was the subject of an ATV special. It was in this special that she expressed her lifelong dream: “to be a star on stage”. Her wish was made to come true thanks to a local singing and performing group “The Accents”, who invited her to be part of their Christmas show at Glace Bay’s Savoy Theatre. For Adele this was “the icing on the cake”. She got a standing ovation from the audience and surely was “THE STAR” that night.

DownHome

This site serves as a link to everyone with an interest in Down syndrome in Nova Scotia. On this page we highlight areas of interest such as events and activities around the province.

If you have an event coming up, want to become a member (membership is free) or would like to share something of interest with our members we invite you to contact us by clicking on our logo.

Seminar: Saving on Taxes, Protect Inheritances and Maximize Disability Support Benefits

Saturday, October 13, 2007
2 sessions at 10:00 AM and 2:00 PM
Saint Mary’s University
Sobey Building, Room 265

For details about the seminar please click icon on the right. Please direct all questions and registrations to Sharon Brethour at: sgbrethour@on.aibn.com or phone toll-free 1-866-536-7673.

Document
Seminar
The Possibles
A group of young people and artists living with Down syndrome will meet on Saturdays during the Fall of 2007 to talk and create art work about their dreams and future plans. Want to meet the young people who make up ‘The Possibles’? Want to see what they have been upto? Visit their Blog by clicking on the icon. On this blog photo’s, stories and artwork by The Possibles will be posted.

This project has been generously supported through the Nova Scotia Government’s Cutural Activities Program, Dalhousie Health Sciences student fundraiser and NSDSS.
Possibles Blog
Possibles Blog
Tools for Life Conference 2007
October 26th, 2007 at Horton High School, Greenwich, Nova Scotia

Making living, learning & working easier for children, youth, adults and seniors
A day of Free Public Educational Sessions & Exhibits
Document
Conference guide & registration form
NSDSS in co-operation with Andrea’s Music Studio will continue to offer the music program for toddlers thru primaries starting September 8, 2007, time 10:30 to 11.15 hrs.
To register please send email to mail@novascotiadownsyndromesociety.com and state name and age of your child(ren).

For more info about Andrea’s Music Studio and the programs they offer please visit: http://www.andreasmusicstudio.com/

reecesrainbow
Reece’s Rainbow is a 501(c)3 registered ORPHAN charity, and we are completely non profit and volunteer. We are a faith-based organization, but we welcome families and individuals of all races, religions, ethnic backgrounds, and nations!! Reece’s Rainbow was created to raise awareness the availability of children with Down syndrome internationally, and to raise money towards the cost of adopting them. In many developing countries, children with Down syndrome are hidden away in orphanages out of shame and ignorance. Many of them die before they turn 12, and medical attention is at a bare minimum.

At Reece’s Rainbow, we provide the unique opportunity to see the waiting children in a centralized location, and for those who are simply not in a position to adopt, to “sponsor” one or more children and contribute to their adoption costs for another family. There are MANY ways in which you can make a difference, and it is very powerful to watch the grant fund of a child you sponsored grow to the point that a family steps up to adopt them. You just changed the course of a child’s life!!

I encourage all of you to visit our website and learn more about our mission, see the children, help us find families for them, and give them the chance to HAVE a family with even the smallest contribution.

Andrea Roberts
Reece’s Rainbow
Down Syndrome Adoption Grant Ministry

Petition ‘Canada needs a prenatal diagnosis awareness act’
Technological advances and a recent expansion of the scope of prenatal screening to include all pregnant woman have not been accompanied by an appropriate expansion of awareness and educational programs. The Nova Scotia Down Syndrome Society believes a real choice can only exist when prospective parents receive balanced, reliable information about the diagnosed condition and the options they have.
NSDSS has created an online petition http://www.gopetition.com/petitions/canada-needs-a-prenatal-diagnosed-condition-awareness-act/signatures.html to call for a Prenatal Diagnosed Condition Awareness Act. This Act could manage the set up of information and educational programs that will help raise awareness before the choice to undergo prenatal testing is made, or even before a woman becomes pregnant. It can also ensure prospective parents receive non-directive isupport and information about the diagnosed condition of their child.

Please sign our petition and forward this message to everyone who might be interested because every signature counts!

Buddy Walk
Buddy Walk 2006 a great success.

Over 100 hundred people braved the chilly weather; and more than 5000$ was raised. See our newsletter for details and photo’s.

“Thanks A Bunch” postcards, created by Cape Breton artist Adele, now for sale at NSDSS

“Thanks A Bunch” front
The cards are a wonderful way to say “Thanks” to all the special people in your life and raise awareness at the same time.

Folded cards plus envelopes, blank inside, prices:

1 card $1,75 each
10 cards or more $1,25 each
20 cards or more $1,00 each
To download your order form click on the picture left.

New Parents

While you may have been surprised to learn your baby has Down syndrome, know your child will be a wonderful addition to your family.

Babies with Down syndrome need what all babies need -cuddles, nourishment, and love. They will grow, learn and develop, reaching childhood milestones- just at their own rate. Although your baby may have some physical characteristics common to people with Down syndrome, he or she will also look like members of your family.

Your baby also needs health care, a rich stimulating environment and the company of family and friends. A good starting point would be to contact your local Early Intervention program. You can find a link to the Early Intervention Nova Scotia website on our Links page. The brochures “Your child with Down syndrome” and “Celebrate Being” explain some of the characteristics of individuals with Down syndrome, including possible health and developmental issues. You can download these brochures by clicking on the links below.

About Down Syndrome…

· Down syndrome is a naturally occurring chromosomal arrangement that has always existed. It occurs in all races, genders, geographic areas and in all walks of life.
· People with Down syndrome look like and share characteristics of family members and also share physical characteristics with their peers who have Down syndrome.
· People with Down syndrome have their own unique personality, temperament, capabilities, likes, dislikes and talents.
· All individuals with Down syndrome will have some degree of intellectual disability, however there is a wide variation in mental abilities, behavior and physical development.

· Today early infant stimulation programs and improved educational opportunities enhance a person’s prospects for the future.

· People with Down syndrome learn at different rates and benefit from inclusive classroom settings just like their peers.

· In adulthood, some individuals with Down syndrome will live independently; most individuals with Down syndrome will continue to require daily support in their home environment.

· Increasingly children with Down syndrome are performing at levels undreamed of in the past. Many children are graduating from high school, gaining job skills, attending post-secondary institutions, and finding meaningful employment.

· Many individuals with Down syndrome form meaningful relationships and get married.

· People with Down syndrome enjoy recreational opportunities in their communities and can excel in sports, music, drama and the arts.

· Heart defects are found in 30% – 50% of individuals with Down syndrome and 8% – 12% have gastrointestinal tract abnormalities present at birth. Most of these defects are now correctable by surgery.

· Life expectancy of an individual with Down syndrome is reduced, however 80% of individuals will live to age 55. One of the main causes of a reduced life expectancy is the high rate of early-onset Alzheimer’s disease for individuals with Down syndrome.

· Down syndrome is not the whole person – it is just a part of who they are.

If you would like more information on Down syndrome or would appreciate speaking to a parent for a more personal account of how Down syndrome has affected their life and the lives of their loved ones, please contact the Nova Scotia Down Syndrome Society through the website or email address listed below. As well, Susan Flewelling, Christine Lane and Tara Rutherford are three parents of children with Down syndrome who are happy to speak about their personal experiences.

Susan Flewelling (902) 835-8539
s.flewelling@ns.sympatico.ca

Christine Lane (902) 865-9278
cbleeker@eastlink.ca

Tara Rutherford (902) 885-3637
tarajrutherford@msn.com

www.novascotiadownsyndromesociety.com mail@novascotiadownsyndromesociety.com
Document
Your child with Down syndrome Document
Celebrate Being – About Down syndrome Document
Celebrate Being – About the CDSS

My Flower Of Hope
By JoAnn Doucette Noakes

She’d always loved spring and the flowers
A sign of hope for the land
A sign that God is with us
And life unfolds as He planned