MOSAIC MOMENTS

This week I have been thinking about posting information about the great site Get IEP Help with Yael Cohen. I had the opportunity to talk with Yael a few months back when I stumbled upon her site. So, this evening was going to be the day that I was going to tell you all about Yael and all the great services she provides for parents of children with learning disabilities or delays. I was going to tell you that if your child has an IEP, no matter what the reason, this site and service is something you could not pass up! I was also going to tell you about the teleseminars that she is running FOR FREE and the prizes that she gives away during these calls! I was going to tell you about the articles that are on the site that are extremely helpful for anyone going into an IEP meeting. I also was going to tell you about her blog that she writes with helpful information. 

However, I can’t about all those things, because Yael just sent an action alert from her Facebook page and if you are in America and you have a child with Down syndrome, mosaic Down syndrome, or any learning disability you really should read this….

Legislative Alert - Don’t Water Down IEP Goals

by Yael on August 25, 2009

Hi folks,
I’ve watched it happen…we measure how many kids or the speed at which kids meet their goals and circulate it and what occurs? The goals get watered down to avoid repercussions. Not the way we want it to go. Data? Yes. Watering down IEP goals? No.
Please read and use the link to comment.
Yael

The U.S. Department of Education (USED) has announced proposed regulations governing the Race to the Top Fund — part of the American Recovery and Reinvestment Act that provides a $4.3 billion competitive grant program to states. The “Race to the Top Fund” is designed to encourage and reward states that are implementing significant education reforms in key areas outlined by the Secretary of Education.

The proposed regulations include a variety of ways to measure student achievement that, in turn are used to measure student growth. Rates of student growth will be used to measure principal and teacher effectiveness.

The proposed definition of “student achievement” includes the rates at which students meet goals in individualized education programs (IEPs).

ACTION ALERT

Please take action by submitting the following comments on the Regulations.gov web site regarding the “Race to the Top Fund (Document ID ED-2009-OESE-0006-0001) .”

All comments must be submitted to the Regulations.gov web site.

Please fill in the required information, cut and paste the below comment into the field provided and click “submit.”

Deadline: All comments must be made by Friday, August 28, 2009.

Comment:

IEP goals should not be used to measure student achievement as part of IV Definitions: Student Achievement.

In 2005, USED itself stated “IEP goals are individualized for each student, and a student’s progress toward each goal is measured for purposed of reporting progress to parents for making individualized decisions about the special education and related services a student receives.” “IEP goals may address a broad range of individualized instructional needs, as well as behavioral and developmental needs, and might not be based on the State’s academic content standards. IEP goals may cover a range of issues beyond reading/language arts and mathematics, such as behavior, social skills, or the use of adaptive equipment, and, as such, an examination of how well a student met his or her IEP goals is not synonymous with achievement…”

Such inappropriate use of achievement of IEP goals may lead to the unintended consequence of a reduction in rigor, resulting in a lowering of expectations for students with disabilities. Since student achievement is designed to be used to determine student growth and to measure principal and teacher effectiveness, it is particularly important that the use of IEP goals to measure student achievement be deleted from these proposed regulations.

Thank you for the opportunity to submit my comment.

Sincerely,

Your name

Thank you for your immediate attention to this alert.

Sincerely,
Laura Kaloi
Public Policy Director
National Center for Learning Disabilities

——————————————————————————————-

I’m sorry I couldn’t tell you about Yael and the Get IEP Help site and how great the services are that she provides. If you want information on that, you can visit her site at http://getiephelp.com/

As you all know I have been crazy busy planning for our upcoming conference! I wanted to give y’all some important info so you don’t miss out. 

First of all, Next Friday, June 19th is the deadline for reserving your hotel room. We got a great room block at the Sheraton Cincinnati North Hotel & Indoor Water Resort. It is only $105 per night and for $12 per person you can enter the water park. You can book your hotel by going to our website. 

The conference registration deadline is Friday, June 26. After this, the fees will increase. You can register at our website.

Finally, please see below our press release. If you have a blog or an email list, please post this information for others to see. We are very excited to bring this to everyone and we would hate for anyone who would benefit from this conference to miss out!

See you in just a couple of weeks in Cincinnati!!

 
Keynote Speaker Congresswoman Cathy McMorris Rogers with husband and newborn son w/DS,  Cole

FOR IMMEDIATE RELEASE-June 11, 2009

Parents of children with Down syndrome (DS) are universally concerned about the wellbeing of their child’s health, future, and ability to connect with other DS families.  The Down Syndrome Association of Greater Cincinnati (DSAGC) hosts “Building Bridges for Down Syndrome”: the fourth biennial research and awareness conference presented by the International Mosaic Down Syndrome Association (IMDSA).

The term Down syndrome (DS) was named after Dr. Langdon Down, a British doctor who first described the condition in 1887.  This year marks the 50^th Anniversary of the discovery of the extra 21^st chromosome that causes Down syndrome.  DS is a genetic condition that occurs in one in every eight-hundred (800) births.  There are four types of Down syndrome:  Trisomy-21, Translocation, Mosaic, and Mosaic-Translocation. 

The Down syndrome community has leapt many hurdles in paving the way for future generations, but there is still a lot of work to do.  The attendees of this biennial research and awareness conference are empowered with information, hope for the future of all individuals with DS, and are given the opportunity to participate in various research studies being conducted onsite during the conference.  Teens and adults with DS, along with their siblings, will learn everything from how to manage a budget to relationships and friendships in the “Teen and Adult Conference.”  Children ages 2-12 with DS along with their siblings, will learn a variety of subjects: Acting and Puppetry to Bullying to Stranger Danger in the “Kid Konference.”  Students interested in professional careers pertaining to DS will supervise these youngsters; giving them a better understanding of what DS really means for these individuals.  Together, families and professionals will enjoy the “Friday Night Family Reunion & Silent Auction” with entertainment from The Amazing Portable Circus and self-advocates Sujeet Desai, Tim Colvin, and Casey Morton.

Some attendees of the 2007 conference held in Richmond, VA said, “At the IMDSA’s Conference, there’s a sense of family the moment you step through the doors, everyone is welcoming.  I’ve learned so many things from all the speakers!” 

Join IMDSA and DSAGC Friday, July 10 through Sunday, July 12 at the Sheraton Cincinnati North Hotel and Indoor Water Resort in Sharonville, Ohio for a fully scheduled weekend of information, family fun, socialization, and entertainment by Sujeet Desai, Dan Kulp, Tim Colvin, and Casey Morton.  Over 30 experts will discuss various topics that will beneficial to the betterment of all families of children and adults with DS.  This is a life-span conference with topics pertaining to all ages of people with DS.  Researchers and professionals will also benefit greatly by attending.  There will be many great activities, workshops, and sharing of information.  A sure highlight of the weekend will be the “Family Awards and Celebration Banquet and Dance” with self-advocate Jennifer Katz and comedian/musician Dan Kulp. 

Reservations are filling fast and space is limited, so register and reserve your spot today!  For more information on how to register, visit www.imdsa.org

 # # #

The International Mosaic Down Syndrome Association (IMDSA) provides support, information, and research to any family, individual, or professional whose life has been affected by mosaic Down syndrome. Its Research & Awareness Conference provides support, information and research to all forms of Down syndrome.

Contact:

Kristy Colvin

IMDSA President

Email: president@imdsa.org

Toll free:  1-888-MDS-LINK

Web:  www.imdsa.org

Sometimes there are some advantages to having A.D.D. I tend to hop from one place to another when I am looking for something online and just like when you go to the store for one thing and come out with a special treasure you never knew even existed, most of the time when I am surfing on the web, I often find a special treasure here and there that I never knew was even there!

Just recently, I happened upon such a treasure and if you are a parent of a child with Down syndrome or Autism or any learning disability or developmental delay, I think you will agree that this is a fantastic find! Over the weekend, I had the opportunity to talk on the phone to the founder of Get IEP Help, Yael Cohen, and we had a great conversation about all that Yael does to help parents understand the whole IEP process.

Yael says,  “When things just aren’t going so well with your child at school, you want to know why, what to do, and how to get it. I have over 30 years experience doing just that. Along with helping parents successfully advocate for their children’s educational needs, I also directly help children with learning challenges to read, spell, and learn other academic skills and strategies. I have a B.A. in Speech Pathology and an M.A. in Special Education, with an extensive background in reading, math, and writing instruction. Parents like you seek me out for my expertise, but also because I can help you not only figure out what will work for your child, but where you find the local resources. I am a true believer that your child deserves a great education. With the right kind of instruction, every child can learn - yours included. In my spare time, I enjoy the gorgeous Colorado mountains. I have adult twin children, who finally(!) sleep through the night, and I live in Boulder, Colorado. I look forward to assisting you and your child.”

She has a great deal of information available at your fingertips on her website  and she offers FREE TELESEMINARS ,(next one this Tuesday!) a FREE PHONE CONSULTATION, several books and products to help you with IEP’s and help you with your child’s learning problems,  and if you need a little extra help, Yael will help you with that Second Opinion . As a professional she can help you with your IEP and take some of the anxiety and tears away!

Consider this….

Does your meeting seem like Debra’s in Florida?

“I sat in that IEP meeting with my heart throbbing.  There were at least a dozen people, most of whom I had never met, sitting on the other side of the table, telling me about my child’s numbers.  They kept smiling at me while they spoke ― mostly in what sounded like Greek.

“They gave me lots of papers and told me I should sign.  Although they said I’m their partner, I seemed to be the only one who didn’t speak Greek or understand what the numbers meant.   I was still trying to grasp what they said about something being wrong with my child.  They asked me questions, but didn’t ask more about my suggestions or write down what I said.  I thought I knew my child, but suddenly, at that meeting, I felt stupid and left out.”

Or , does your IEP meeting seem more like Susan’s, in Colorado?

Susan’s son, Doug, was so learning disabled, that in the spring of his first grade year, he could not read anything, not even his name!  He cried in class when the teacher said, “You don’t really need my help!

You can do it if you try.

“Nightly, Doug confided to his mom, Susan, that he was clearly the stupidest kid in 1st grade.  Finally, the school agreed to test Doug. Susan was both anxious and excited on the way to the first IEP meeting. She thought that for sure the school would figure out what Doug’ problems were and how to solve them.

“Susan was in shock as the meeting unfolded.  The school team used gigantic words that she didn’t understand and kept spewing out numbers that made little sense.  They blamed her for the fact that Doug couldn’t read and even suggested a change in visitation between her and Doug’s dad.  In her gut, little that they said felt right to her. 

“Over and over, the staff kept asking Susan to trust them and to sign the forms. But when she asked what they would be doing to help Doug, the answers were again full of foreign-sounding words and numbers. She refused to sign.  Instead, Susan took the paperwork home and tried to do some quick research on the internet, but there was just too much she didn’t understand.  In tears, she called an old friend of hers who had help from an advocate for her child.”

Here’s what Susan said afterwards…

“It was just what I needed.  Yael, the advocate my friend recommended, explained everything to me in plain English, showed me what the testing meant, and analyzed the IEP (Individual Education Plan) document for me, letting me know which parts made sense and which parts did not.  She asked me questions and offered solutions.

She gave me a plan to follow for the next meeting and then convinced the school to use a research-based reading program for Doug.  She helped us to find a dyslexia specialist to help him outside of school.  She is a walking encyclopedia, who gave us so many resources!

Over time, Yael has taught us how to advocate effectively for our child.  No longer do I feel stupid in the meetings about my son.  And on top of that, my son now is a avid reader!  I’m really excited she’s offering these online conferences for parents, because all parents of kids with special needs to know the secrets of how to get through!

You Don’t Want To Miss This Online Conference: How To Sign Up

Go Now To www.GetIEPHelp.com/spedteleseminars.html and Register for Free Online Seminars for Parents of Kids With Learning Challenges.

This week’s online/phone seminar on Tuesday is on How To Break Down Academic (and

Household) Tasks So That Your Child Can Learn How To Do Them.  To sign up for this and other Get IEP Help free online parent seminars, go to:  www.GetIEPHelp.com/spedteleseminars.html

When you get the conference info, you’ll also get a link to the last online conference Yael did, which is free online for just a few more days.  You’ll also have an opportunity to ask a question for this conference.

What Else You Can Discover:

You might want to check out Yael’s other services while you’re on www.GetIEPHelp.com  –  She offers a whole “Get IEP Help System” which helps you do it yourself, 2nd Opinions on your upcoming or last IEP,

and even a super online reading program for beginning or struggling readers.

Folks, it doesn’t have to be that bad – check it out today!

 Please check out Yael’s website by clicking here.

I know that it has been a while since I have posted a blog and I apologize to my devoted readers for my lack of writing. I have been incredibly busy with the planning of our Down syndrome Research & Awareness Conference and just have not had the time to write any more. Today, I announced our schedule for the main conference and we should have that on our site in a few days. Within a few weeks we should have our Kid Konference and Youth Conference schedules ready to go and I will publish them then.

If you have not yet registered for the conference in Cincinnati, time is running out!

Online Event Registration - Powered by www.eventbrite.com

I have not posted in a while only because I have been swamped with conference planning! If you have not yet reserved your spot for the conference time is running out!

MySpace Countdowns

 You can find out how to register for the conference by clicking here

One workshop that we will be having at this conference is a Round Table discussion on Adult Transition and the things that need to be changed with this system in America. When an adult with Down syndrome finishes high school, there should be a transition team in place that will help the adult and their family to make decisions on what to do next. However, that system basically sucks. And, another problem many families are having is the emotional impact of “What do I do now?” Families have trouble letting their child grow up because they have been so focused on their well being for the past 20+ years and all the sudden all the support they once had is basically gone.

It is time for a change. Just like back in the 70’s when families stood up and demanded that their children be allowed in public schools, families now need to stand up and pioneer this new step to a better future.

If you are interested in being part of this committee, would like to participate in the Round Table discussion in Cincinnati, or just have questions, you can send me an email at Kristy@imdsa.org and I will be happy to talk with you.

It is time to “Spread the Word to End the Word,” and tomorrow, 31 March, events throughout the United States and around the world will make people stop and think about their hurtful and disparaging use of the word “retard.”

On Tuesday, March 31 people throughout the world will stand united to spread awareness that the time is NOW for the “r” word to end. 

Many don’t understand why this word is so offensive. However, this is considered a hate word, a racial slur, an intent to harm.

March 31 is also the last day for Early Registration for the Down Syndrome Research & Awareness Conference. On April 1st these prices will go up. Please visit our website by clicking here to find out more information.

On July 10-12 the Down Syndrome Association of Greater Cincinnati will host IMDSA’s Down Syndrome Research & Awareness Conference . This is actually 5 conferences in one.

1. Families and Individuals  participate in research with various Down syndrome researchers (by appointment)
2. Down Syndrome Association Board Members workshop allows DSA board members to network and learn more to help run their DSA’s.
3. Research & Awareness Conference allows families and professionals the opportunity to learn from over 30 experts in the Down syndrome field through 4 ongoing breakout sessions throughout the weekend.
4. Children ages 2-12 (sibs included) have fun at Kid Konference while students get hands on experience to enhance their careers.
5. Teens ages 13-adult (sibs included) enjoy themselves while learning great things at the Youth Conference

With our early registration deadline quickly approaching on March 31st I want to be sure that I tell you as much as I possibly can concerning the conferences.

Many have asked about the Youth Conference. This is for ages 13-adult and siblings are included and will also learn and have fun!

We have broke this into three themed tracts and youth can choose which workshops they wish to attend. We are still working on the finalization of this conference schedule, but to give you a general idea of the topics we are looking to be addressed, here are just a few of them:

Tract 1 Recreation and Leisure:

• Social Networking
  
• Acting and Movement
  
• Sports - Special Olympics
• Yoga
  
• Karate

Tract 2 Planning for the Future:

• Independent Planning
• Self-Advocacy
  
• Leadership opportunities
• Transitioning to College
• Money Management

Tract 3 Personal Living:

• Self Defense and Community Safety
• Special Friends Online
• Relationships
• Music and Singing
• Jobs & Careers
• Hygiene and Personal Care

The folks at Starfire U have been fantastic at planning this Youth Conference for us! I am very excited about all the possibilities for our Youth Conference this year and from past experiences, the youth who attend our conference not only learn very valuable information to help them with their lives, they also form lasting friendships that carry over far after this conference has ended!

To find out more information about the Down Syndrome Research & Awareness Conference and how to get financial assistance to attend, please click here to visit our website.

It is hard to believe that we have been planning for our Down Syndrome Research & Awareness Conference  for ten months now! No wonder I am so tired!

On April 1, 2009, the conference registration prices will go up. Not considerably so, but this is our early registration deadline and the price will change. 

Many ask, how much it cost to attend the conference.  Well, it depends on how many you have coming with you!

If you register before March 31 and you are a member of IMDSA, the registration for the main conference is less expensive than those who are not members. However, you can become a member for only $25 and this will give you a free subscription to our quarterly newsletter MOSAIC WORLD that is packed with information pertaining to not only mosaic Down syndrome but also Down syndrome. These articles are all very helpful in raising your child no matter how old or young they are. You also will receive discounts such as this and our information packet full of info and inspiration. If you wish to become a member, even for the discount, that is ok with us! You can click here for more details. 

To register, click here for details.

We realize that many people are struggling right now to make ends meet and we want more than anything for you to be able to attend this conference! We are, doing all we can to help make it as easy and affordable as possible.  To make this easier, we have compiled a list of possible organizations that may help you attend the conference. Don’t be shy about this! Many organizations have funds set aside to help you attend conferences such as ours! So, please utilize this list!

IMDSA is offering two (2) conference scholarships to IMDSA members. Please click here for more details.

DSAGC is offering scholarships to families in their immediate area to attend this conference. Please click here for more details.

There are many organizations that have funds set aside to help families like yours attend conferences that will enhance your parenting to your child with special needs. If you live within the United States of America please click these agencies below and ask them if they have financial assistance available to help your family attend this conference.

Down Syndrome Associations

The Lion’s Club

The ARC

United Way

Developmental Disabilities Council

Yellow Pages for Kids

If you live outside of the United States and have a current VISA or Passport contact the following organizations and ask them if they have financial assistance available to help your family attend this conference.

Down Syndrome Associations

The Lion’s Club

United Way

If you have not yet seen our presenter list you can click here for that.

I am very excited about our upcoming conference and I do hope that I can meet all of you there! If you have any questions, just ask!

The big news for the weekend was supposed to be all about World Down Syndrome Day. This very special day set aside to celebrate the lives of those with Down syndrome. People throughout the world who know someone with Down syndrome or have Down syndrome themselves celebrated in various ways and educated their communities about who people with Down syndrome really are.  When you google the topic of World Down Syndrome Day, you get 2,080,000 results. That is a lot of people spreading the word!

However, in the midst of all this celebration, US President, Barak Obama insulted those with Down syndrome and other special needs when making his comment about Special Olympics. When you google that, you get 3,730,000 results. Imagine if this had happened in the middle of the week! The results would have been much higher I imagine. 

It is important to remember that it doesn’t matter if you are for or against Obama being president. The fact is that he is president. A leader of a very powerful nation. Someone that many look up to. Someone who children want to be like. Someone who represents America. 

And, as a representative of America, I expect my representative to represent my feelings and my beliefs. My feelings and my beliefs are in line with what this country was founded on. That ALL people be treated equal. This does not just mean skin color, religion, or culture. This means ALL people. People with different abilities. People in wheelchairs. People with developmental delays. People who are Blind. People who are Deaf. People with extra chromosomes. People with missing chromosomes. People who are short. People who are tall. ALL people means EVERYONE.

Sure, that won’t happen all the time. Sure, there are many times when I disagree with what happens. And, yes, there is very little that I can do to change people’s perspectives.  However, I can make a difference one person at a time!

On March 31 everyone throughout the world will ban together to stop the “r” word. The Special Olympics has called for a National Day of Awareness for America to stop and think about their use of the R-word. The R-word is not “recession”, but something more hurtful and painful-”retard.”

Although Special Olympics is calling for this in America, I would like to challenge each of you, no matter what part of the world you are in to educate others in your country that words do hurt. Words do make a difference. And encourage them to stop using this word. Replace your “r” word for one much more accepting. Replace it with RESPECT. To find out more about this and purchase a Tshirt or button you can go here.

With our presenter list completed and our conference planning moving forward quite quickly now, we are heading towards our Early Registration Deadline ! On April 1st the cost of registration for our Down Syndrome Research & Awareness Conference will go up! So, be sure to register by March 31st to get this discount. 

We have one week before World Down Syndrome Day is here! This Saturday, March 21st is World Down Syndrome Day and to commemorate the day, IMDSA celebrates with Genes Day to spread awareness and change the stereotypes surrounded by all forms of Down syndrome. To find out more about Genes Day and World Down Syndrome Day, you can visit our website by clicking here.

Many of you have met my friend Casey. Casey has been writing a blog Mirror Mysteries  and is really building it up! In addition, he has gotten onto Facebook and including lots of video diaries that I think you will enjoy alot. So, if you are on Facebook look up Casey or go to his blog to find out more!

This week I am taking a therapeutic vacation! I have not stepped away from my work at IMDSA in the past eight years! And, I probably am not going to be able to do that completely even this week. However, it is Spring Break for my youngest son, Garrett and we are taking a History trip to learn about the five missions in San Antonio! This is something he has studied in school and I wanted to give him the opportunity to learn beyond the pictures. So, this week, things will be quiet at MOSAIC MOMENTS (unless I can find Internet access in the late evenings) 

This coming Saturday Casey has a VERY BIG ANNOUNCEMENT that he will be making on his Facebook and Mirror Mysteries blog! So, please be sure to join him as he counts down the days to his announcement! And, this is the perfect time for that because I wont be around to spill the beans!

I hope everyone has a wonderful week! Love your children this week and cherish the quiet moments that you can spend with them, because before you know it, they will be grown up and will want to share those special moments with their friends more than you!