We are excited to offer even MORE Great Wolf locations for our 2014 Kickoff to World Down Syndrome Day Meet Up.
Last year, families that participated in our IDSC Kick off to WDSD enjoyed up-to-date information on our events through the Facebook Groups created for each location.
By joining the Facebook Group for your location, not only will you stay up-to-date on event plans, but you will have the opportunity to meet other local families in anticipation of that face-to-face meeting at the event!
Join the Facebook Group for your preferred location by clicking on the link below. We can't wait to meet you!
Charlotte/ Concord, North Carolina
Cincinnati / Mason, Ohio
Grand Mound, Washington
Grapevine, TX
Kansas City, KS
Niagra Falls, Ontario
Pocono Mountains, PA
Sandusky, OH
Traverse City, MI
Williamsburg, VA
Wisconsin Dells, WI
Wednesday, May 22, 2013
Monday, May 13, 2013
Join us for the 2014 Kick Off to World Down Syndrome Day at Great Wolf Lodge
Category: Great Wolf Lodge meet ups, IDSC WDSD Kickoff 2014
It is only May, but here at the International Down Syndrome Coalition we are already planning for the 2014 Kick Off to World Down Syndrome Day Meet Up at the Great Wolf Lodge!
The turn out this year was incredible, and we are so excited for the year 2014. This year, we gathered in five of the Great Wolf Lodge locations, and we heard you, "When will you host a meet-up at a location closer to me?" So we got together with our Great Wolf Lodge friends and when they asked which locations we wanted/needed for 2014 we answered, "ALL OF THEM!"
So next year, March 7-9 2014 we will have an IDSC Kick Off to World Down Syndrome Day in all ten locations in the United States and one in Canada!
We couldn't be more excited to work with the Great Wolf Lodge again to bring you the best that we can give you!
Plus $9.99 for resort fees. {these fees cover internet, towels, life jackets and parking}
In the United States, the cost of the room WILL INCLUDE 6 water park passes.
You can make your reservation by calling toll free at 1-800-559-WOLF (9653) by January 20, 2014.
Identify yourself as a member of the IDSC with the following group codes.
Wisconsin Dells:1403IDSCME
Sandusky:1403IDSC
Traverse City:1403IDSC
Kansas City:1403INTE
Williamsburg:1403INTE
Pocono Mountains: 1403IDSC
Cincinnati/Mason: 1403INTE
Grapevine: 1403IDSC
Grand Mound:1402INTE
Charlotte/Concord:1403IDSC
The Niagra location WILL INCLUDE 4 water park passes, the hotel will sleep 4 people per room. {Water park passes can be purchased for $40.00 per room/ per night (maximum 2)}
you can make your reservation for this location by calling the toll free number 1-800-605-9653 by January 20, 2014
Niagra Falls, ON: 1403IDSCME
Pizza Party: We will be having a Pizza Party at all locations on Saturday night hosted by the Great Wolf Lodge. We are gathering in one of their meeting halls to have cheese and pepperoni pizza, soft drinks, cookies and brownies. The cost is $10 per person.
Pizza Party tickets must be purchased in advance using the buttons below. Tickets are available until Feb 25th, 2014.
Please be sure save your receipt. This is your ticket to enter the Pizza Party.
We are looking forward to next year. We are busy planning, organizing, and making sure that you all have a meaningful, enjoyable, and memorable time with your family and with other people that love someone with Down syndrome.
This year we had a blast, 2014 will be even better and we hope to see you there!
The turn out this year was incredible, and we are so excited for the year 2014. This year, we gathered in five of the Great Wolf Lodge locations, and we heard you, "When will you host a meet-up at a location closer to me?" So we got together with our Great Wolf Lodge friends and when they asked which locations we wanted/needed for 2014 we answered, "ALL OF THEM!"
So next year, March 7-9 2014 we will have an IDSC Kick Off to World Down Syndrome Day in all ten locations in the United States and one in Canada!
We couldn't be more excited to work with the Great Wolf Lodge again to bring you the best that we can give you!
Here are the details we can share with you:
Rates: $169.00 a night plus tax. {Minimum 2 night stay required}
Plus $9.99 for resort fees. {these fees cover internet, towels, life jackets and parking}
In the United States, the cost of the room WILL INCLUDE 6 water park passes.
You can make your reservation by calling toll free at 1-800-559-WOLF (9653) by January 20, 2014.
Identify yourself as a member of the IDSC with the following group codes.
Wisconsin Dells:1403IDSCME
Sandusky:1403IDSC
Traverse City:1403IDSC
Kansas City:1403INTE
Williamsburg:1403INTE
Pocono Mountains: 1403IDSC
Cincinnati/Mason: 1403INTE
Grapevine: 1403IDSC
Grand Mound:1402INTE
Charlotte/Concord:1403IDSC
The Niagra location WILL INCLUDE 4 water park passes, the hotel will sleep 4 people per room. {Water park passes can be purchased for $40.00 per room/ per night (maximum 2)}
you can make your reservation for this location by calling the toll free number 1-800-605-9653 by January 20, 2014
Niagra Falls, ON: 1403IDSCME
Pizza Party: We will be having a Pizza Party at all locations on Saturday night hosted by the Great Wolf Lodge. We are gathering in one of their meeting halls to have cheese and pepperoni pizza, soft drinks, cookies and brownies. The cost is $10 per person.
Pizza Party tickets must be purchased in advance using the buttons below. Tickets are available until Feb 25th, 2014.
Please be sure save your receipt. This is your ticket to enter the Pizza Party.
We are looking forward to next year. We are busy planning, organizing, and making sure that you all have a meaningful, enjoyable, and memorable time with your family and with other people that love someone with Down syndrome.
This year we had a blast, 2014 will be even better and we hope to see you there!
Wednesday, May 1, 2013
We spent the entire year since 2012 planning the 2013 WDSD events.
The five IDSC Kick Off to World Down Syndrome Day Meet Ups at the Great Wolf Lodge were wildly successful! So successful we are going to add all of their locations for next year!
The concert benefitting the IDSC by Sarah Conant was absolutely wonderful!
We love, love, love the purse that Katie Kalsi made named MaryEllen, and the strap that inspired our entire event.
And our Wrap Up to World Down Syndrome Day, hosted by Christian Brothers University, and food by Humdingers and Moe's was just incredible! The Company D Dancers hit it out of the park, and the night was truly a celebration!
So from 2012 when we released this video:
To 2013 when we released this video:
Thank you for helping us get the word out there, that every life is indeed, very precious!
Stay tuned for 2014 IDSC World Down Syndrome Day updates! Check back often!
The five IDSC Kick Off to World Down Syndrome Day Meet Ups at the Great Wolf Lodge were wildly successful! So successful we are going to add all of their locations for next year!
The concert benefitting the IDSC by Sarah Conant was absolutely wonderful!
We love, love, love the purse that Katie Kalsi made named MaryEllen, and the strap that inspired our entire event.
And our Wrap Up to World Down Syndrome Day, hosted by Christian Brothers University, and food by Humdingers and Moe's was just incredible! The Company D Dancers hit it out of the park, and the night was truly a celebration!
So from 2012 when we released this video:
Stay tuned for 2014 IDSC World Down Syndrome Day updates! Check back often!
Tuesday, April 30, 2013
One resource that the IDSC can highly recommend to parents in the area of parent to parent support is an incredible Facebook group called Inclusion for Children with Down syndrome.
This group was started, and is run by two innovative, passionate and caring moms, who wanted to help other parents in their journey through the school years!
Bethany began the group, when she realized she wanted a place to discuss inclusion and how to make it work. She knew she needed help in this area, and did not wait to have it come to her. Now many others are benefitting from this! Amazing!
Adrienne had spent years as a mentor for parents, for MPACT and even thought she does not mentor for MPACT anymore, she continues to mentor parents through the IEP process. Adrienne's years of experience working with the schools to give her son the best experience possible, coupled with Bethany's passion to help others navigate the school years, as she learns how to navigate along the way, make this combination that does not miss the mark of excellence!
They wanted a place for parents to be able to discuss "all things school for children with Down syndrome."
Whether you have chosen public school, private school, or home school, all are welcome in this group.
They welcome all IEP journeys, whether it's inclusion or self contained, but they have an emphisis on helping parents navigate the inclusion model effectively.
We hope you will check out this wonderful resource, and meet these two great moms! You will not be disappointed!
 |
| Adrienne Bievenue, wife of Kevin, mom to three amazing kids, including Russell, who has Down syndrome. |
 |
| Founder, Bethany Balsis, wife of Kyle, mom to 5 beautiful children, including Payton and Addison, who have Down syndrome. |
Tuesday, April 16, 2013
Global Down Syndrome Foundation (Global), International Down Syndrome Coalition (IDSC), International Mosaic Down Syndrome Association (IMDSA), National Down Syndrome Congress (NDSC) and National Down Syndrome Society (NDSS) continue to share deep sadness over the tragic and preventable death of Robert Ethan Saylor.
Each organization is addressing this situation in a manner keeping with their particular mission and all the organizations have been in close communication regarding various initiatives. We are all united in condemning this tragic death and to working together to uphold the human and civil rights of people with Down syndrome and their families.
NDSC and NDSS have taken the lead in this case and have met with the local Frederick County affiliate, members of the Saylor family, and the U.S. Department of Justice. Those interactions are ongoing and seek to support the Saylor family, while preserving all options available to them, and, at the same time, to prevent tragedies like Ethan’s death from occurring in the future. Later this month, following another round of meetings with the Department of Justice and the family, NDSS and NDSC will present a joint “town hall” teleconference to share more information regarding initiatives and proposals to prevent this from occurring in the future.
We hear you. We are listening. And we intend to work as hard as we can, together, to prevent this from ever happening again. We need to stay united as one Down syndrome community that is focused on the bigger picture and justice for Ethan.
See what we are doing and how you can help.
National Down Syndrome Congress – www.ndsccenter.org
National Down Syndrome Society – www.ndss.org
International Down Syndrome Coalition – www.theidsc.org
Down Syndrome Affiliates in Action – www.dsaia.org
Global Down Syndrome Foundation – www.globaldownsyndrome.org
Down Syndrome Affiliates in Action, working in its role as a trade association, continues to support and respect the efforts of the other national organizations as all work diligently to address this issue.
Sunday, April 7, 2013
The case for Robert Ethan Saylor eludes us. We at the IDSC try and try to understand what could have possibly happened, but we still cannot understand any of this.
We want to understand how people saw this situation, and did nothing.
We also want to understand why an independent investigation has not been the next step.
Has the death of Robert Ethan Saylor been ruled a closed case, simply by the fact that he has Down syndrome?
So according to reports, because he has Down Syndrome, he died? This concerns us.
We would like to share with you two very significant posts to our site, that reinforce our concerns.
"I am a Correction Officer and every year when we have training we are taught about "positional asphyxiation" which is what seems to have caused the death of Mr. Saylor. I don't understand why these police officers, who restrain people more often and for longer periods of time are not taught this. Simply put, when someone laying on the stomach is cuffed (especially when they are scared and fighting), it causes them to not be able to breathe. The way to alleviate the stress is to roll them onto their side. Then for it to be said he was combative and fighting - well, he probably was OUT OF FEAR! He didn't understand what was going on. A little common sense would have gone a long way in this situation and spared the life of this young man. There are so many people in public service jobs who shouldn't be. I don't really know that training would fix the problem - some people simply don't have it in them to deal with anybody "different". Nor do they want to."
"I understand that the NYPD also trains specifically for handling such situations (though not necessarily DS-specific) and clearly states that to avoid positional asphyxiation, the person should immediately be moved to a position that promotes free breathing... such as the side or in a sitting position. Those I asked indicated that, even with limited media information, it appears that at least a few standard police tactics COULD have been employed -- but weren't -- that WOULD certainly have changed the outcome, more than likely saving Robert Saylor's life. Furthermore, the NYPD is policed by multiple independent entities who review pretty much EVERYTHING they do.At the very least, an independent investigation is warranted."
Please consider signing this petition and this petition.
We are asking for a simple request. An independent investigation. Then when all is said and done, we will be quiet.
We want to understand how people saw this situation, and did nothing.
We also want to understand why an independent investigation has not been the next step.
Has the death of Robert Ethan Saylor been ruled a closed case, simply by the fact that he has Down syndrome?
So according to reports, because he has Down Syndrome, he died? This concerns us.
We would like to share with you two very significant posts to our site, that reinforce our concerns.
"I am a Correction Officer and every year when we have training we are taught about "positional asphyxiation" which is what seems to have caused the death of Mr. Saylor. I don't understand why these police officers, who restrain people more often and for longer periods of time are not taught this. Simply put, when someone laying on the stomach is cuffed (especially when they are scared and fighting), it causes them to not be able to breathe. The way to alleviate the stress is to roll them onto their side. Then for it to be said he was combative and fighting - well, he probably was OUT OF FEAR! He didn't understand what was going on. A little common sense would have gone a long way in this situation and spared the life of this young man. There are so many people in public service jobs who shouldn't be. I don't really know that training would fix the problem - some people simply don't have it in them to deal with anybody "different". Nor do they want to."
"I understand that the NYPD also trains specifically for handling such situations (though not necessarily DS-specific) and clearly states that to avoid positional asphyxiation, the person should immediately be moved to a position that promotes free breathing... such as the side or in a sitting position. Those I asked indicated that, even with limited media information, it appears that at least a few standard police tactics COULD have been employed -- but weren't -- that WOULD certainly have changed the outcome, more than likely saving Robert Saylor's life. Furthermore, the NYPD is policed by multiple independent entities who review pretty much EVERYTHING they do.At the very least, an independent investigation is warranted."
Please consider signing this petition and this petition.
We are asking for a simple request. An independent investigation. Then when all is said and done, we will be quiet.
The time is now.
Wednesday, March 27, 2013
For immediate release:
First and foremost, the IDSC wants to extend our sincerest condolences, again, to the family of Robert Ethan Saylor. Our deep grief extends beyond what words can express.
We agree with the NDSC and the NDSS, that officers should have been trained on how to interact with individuals with Down syndrome and other developmental disabilities. We want to also encourage further training.
However, we are concerned that the officers were unable to direct Robert Ethan Saylor in a more productive and helpful way, that is due to any person they would encounter.
Strategies to diffuse the situation, that would be a product of common sense, and not training, seem to be absent. This concerns us a great deal.
First and foremost, the IDSC wants to extend our sincerest condolences, again, to the family of Robert Ethan Saylor. Our deep grief extends beyond what words can express.
We want to thank the National Down Syndrome Congress, Family Resource, Information and Education Network for Down Syndrome (F.R.I.E.N.D.S.), National Down Syndrome Society, and the Kennedy Krieger Institute, for taking the time to meet with the the Saylor family and the Community Relations Service (CRS) of the U.S. Department of Justice.
Understandably, the families in the Down syndrome community are upset about what happened to Robert Ethan Saylor, and the response by the national Down syndrome advocacy groups. They are calling for an independent investigation. We stand firmly by all concerned, and we will be watching closely to be sure that this is the course of action.
We are glad that the NDSC has also called for this independent investigation*, and agree with them in their statement where they say, "the Saylor case is filled with poor decisions and missed opportunities."
However, we are concerned that the officers were unable to direct Robert Ethan Saylor in a more productive and helpful way, that is due to any person they would encounter.
Strategies to diffuse the situation, that would be a product of common sense, and not training, seem to be absent. This concerns us a great deal.
Along with the NDSC, we want answers to why the “following was reported to have happened”:
-"The officers should have worked with Ethan’s support person on strategies to diffuse the situation, rather than handcuffing him."
-"Ethan’s mother was on the way to the theatre, called by his support person. Officers should have waited for her to arrive to help resolve the situation."
-"Other patrons nearby said they were afraid to get involved. They shouldn’t have been."
How do we empower people to get involved? How do we get people to see that people with special needs are worthy and deserve to have someone stand up for them? What steps does the Down syndrome community need to take, to ensure that this never happens again?
We want to focus on answering these questions, along with insisting that an independent investigation actually happens.
This case is far from closed for the IDSC. We will be watching to see that it is also far from closed for Ethan and his family. An independent investigation is not just a suggestion, it is an expectation.
*If you would like to express your concern to the DOJ directly you can contact them at: 202-307-5138
*Tolleson noted that NDSC believes an independent investigation of what happened is necessary. “Beyond the need for accountability, we need to know exactly what occurred so that we can work with law enforcement to ensure that it never happens again.”
*Tolleson noted that NDSC believes an independent investigation of what happened is necessary. “Beyond the need for accountability, we need to know exactly what occurred so that we can work with law enforcement to ensure that it never happens again.”
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