Nova Scotia Down Syndrome Society

Making Waves

DownHome

About us

Contact us

Media & Press

More beautiful faces...

New parents

Members Page

Teen & YA Page

Team Possibles

Newsletter

Resource Library

Calendar

Special Olympics N.S.

Links

Members Page 

News and information by and for our members

Blogs and website of our members:

http://malcolmcr.blogspot.com/


http://www.gregorgillis.com/


'It really helps to know you are not on your own'

Connor MacEachern connormac@thecasket.ca

Olivia Layes, 2, took in the sights at a World Down Syndrome Day celebration Sunday afternoon at Kids First. (Connor MacEachern photo)

Vanessa Carr began a search when her son Jonah, who has Down Syndrome, was born. “I went looking for a support group, but there were none around,” she said. 

Carr founded Down Syndrome Families of Antigonish so parents could share their experiences raising Down Syndrome children.

“It really helps to know you’re not on your own.”

Five families meet at Kids First the last Sunday of each month, Carr said.

“We talk about what to look forward to and what to expect down the road.”

The children range from two to seven years old, so parents of the older children can give parents of younger children a heads-up, she added. Valerie Bailey brings her daughter Anna to the group each month.

It’s for socialization as much as anything,” she said. “It’s good for her to be around other kids with Down Syndrome so she knows she’s not the only one.”

The group held a special meeting March 21 to celebrate World Down Syndrome Day. The day is celebrated on the twenty-first day of the third month in honour of the cause of Down Syndrome, a third copy of chromosome 21.

Carr said organizations such as Early Intervention and the Nova Scotia Down Syndrome Society provide resources to parents of Down Syndrome children.

"It would be nice to have respite support too,” she added.

“There’s probably lots of resources out there but I’m not going to know about them until Jonah [now two years old] is a teen.”

In-school programs such as speech pathology are often helpful, she added.

Bailey said attending the meetings takes away the isolation and anxiety that can come with raising a Down Syndrome child.

“One you start to do that, you realize this is great, this is fine,” she added.

Bailey said attitudes are changing for the better, but she would like to see more inclusion for Down Syndrome children. "There is nothing to pity with this child,” she said. “She can walk into a room and wrap everyone around her finger.”

Carr said Down Syndrome Families of Antigonish is looking for new members. For more information, call 318-0297, email downsyndromefamiliesofantigonish@hotmail.com or search Facebook for Down Syndrome Families of Antigonish.


http://www.thecasket.ca/stories.asp?id=1211
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