Moms AIM to help kids with Down syndrome

by Johnathan Charlton from The StarPhoenix:
When Christy Waldner learned her seven-day-old daughter had Down syndrome, it felt like a slap in the face.
All she could think of was a low-functioning boy she went to school with who was cruelly teased and taunted into swearing for the amusement of others.
“That’s the first thing that popped into my mind, how this boy didn’t have great speech but the thing he could do was swear and everybody thought it was funny.
“That’s what I thought, instantly, about my daughter — that she would be bullied and teased and it would be a negative experience.”
The reality for the Muenster family is fortunately quite different.
Sydney is now a happy, funny 15-year-old who plays soccer and volleyball with her friends at school (she can serve overhand, Waldner notes proudly) and wants a horse for Christmas.
But the journey was a challenge, with few services for the family in Saskatchewan.
Now, Waldner and Saskatoon parent Tammy Ives have started the non-profit Ability in Me to help other families.
“The two of us together started moving ahead. It was amazing the people we ran into and connected with,” Waldner said.
If everything goes according to plan, they’ll hire two speech pathologists, a certified teacher and an educational assistant when they open next September.
Ives’ six-year-old son Alexander “needs to see things or do things hundreds of times more than a typical kid,” Ives said.
There’s not much one-on-one speech therapy in schools, and while Alexander goes for private therapy, not everyone can afford that, Ives said.
They’ve modelled AIM after Calgary-based organization PREP.
Sydney was one year old when they first went to PREP and saw the level of service and the expertise the centre has, Waldner said.
“You walked in the doors and it felt like a breath of fresh air. They were able to teach us and help us, it was just incredible.”
When they later accessed services in Saskatchewan, there was no comparison, Waldner said.
PREP’s expectations were high, which boosted the family’s hopes for Sydney — that she’d progress and be able to contribute to society.
“It was like night and day. It was like, oh my gosh, we need this.”
They have a business plan, a volunteer board and have met with the Ministry of Education and early childhood intervention programs.
They held their first information session in October.
Twenty-five parents have signed up so far, and AIM should have a capacity for 110 kids.
Ability In Me will be based in Saskatoon but hopes to operate across the province.
Details about the costs haven’t been finalized, but Waldner doesn’t want money to be a barrier for families.
More information is available at aimprogram.ca.
with files by Sean Trembath
jcharlton@thestarphoenix.com
twitter.com/J_Charlton

You can help make a huge difference to children's lives

by Hull Daily Mail UK:

Being involved with a charity is incredibly hard work and you do feel very responsible, but at the same time it is an extremely rewarding experience.

When my daughter Rachel was born eight years ago, she was diagnosed with Down's syndrome shortly after her birth.

There were 15 children with Down's born that year in Hull – more than usual.

Over the course of the first year or so, I would come into contact with a few parents with children with the condition. I met Lisa Bentley when both our children had turned one.

Lisa was a teacher whose little boy Isaac had Down's syndrome. Lisa wanted to set up a "singing and signing" group for children with the condition.

We both felt there was nothing for our children or for parents locally – and this is how Downright Special was born.

It takes up a lot of our time running a charity, but we know it is making a huge difference to our children's lives.

Our main focus is on education. Many of our school-age children attend a mainstream school, but every two weeks they come to our charity headquarters in Bodmin Road, Hull, with their teaching assistants, and have very focused lessons in small groups.

Our babies and pre-school children come every week for play and education sessions, where parents can learn and share advice and information.

We have regular visits from a speech and language therapist and from the physiotherapy service, both vital for helping the children's development.

We run workshops for parents and teaching staff to equip them with the skills needed to ensure our children reach their potential and are fully included in the family, in schools and in the community.

All of this takes its toll, of course, and I took a two- year career break so I could give Downright Special the attention it deserves.

We currently have two vacancies for trustees, and as last week was National Trustees Week, this seems like a great time to shout about the work we do, and see if anybody would like to get involved, either to fundraise for us, or work with us as a trustee.

I can't promise you that it will be easy, but for job satisfaction, it's unbeatable.

For more details, visit www.downrightspecial.co.uk or call 01482 420160.

Gaps in the Map Survey Released by DSAIA, NDSC & NDSS

National organizations partner to help ensure access to support and information 

Down Syndrome Affiliates in Action (DSAIA), the National Down Syndrome Congress (NDSC) and the National Down Syndrome Society (NDSS) have partnered to ensure that all families have access to support and information from a local Down syndrome affiliate through the "Gaps in the Map" Project. The project's goal is to locate and document all Down syndrome support groups in order to identify what areas are not being served and then explore ways to provide that support to the "gap" areas.

We need YOUR help to make this project a success by doing the following:

1. Complete this BRIEF survey before July 31, 2012 by clicking here.
2. Forward this newsletter to all your friends in the Down syndrome community nationwide! Encourage them to fill out the survey!
3. Tweet and share the survey link with other group leaders via social media!
4. Talk about this project with at least one organization in the Down syndrome community today.
5. Be creative! The more we share this project, the more families will receive the support and information they deserve!

Stay tuned for a variety of fun and cool ways to share this project with your friends and friend organizations. Click here for all the latest project details or visit us on Facebook!

For more information, contact Deanna Tharpe, DSAIA Executive Director, at director@dsaia.org or 701-425-7129 or Allison Wixted, DSAIA Gaps in the Map Chair, at dsagrstepup@yahoo.com or 804-920-9643.

Coffee group gives military families support

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