Tuesday, March 30, 2010

What Violette just drew

- Posted using BlogPress from my iPhone

Location:Foxberry Ln,Bonita Springs,United States

Baby Center Down Syndrome Message Board Blog Roll

I get a lot of helpful information from the mama's over at Baby Center's Down Syndrome Board. It is so nice having, oh, over 100 friends who have children with Down syndrome who are right around Violette's age, all across the country.   It is great knowing what other kids with Down syndrome are doing who are around her age, what they do in therapy, what sort of services they get, etc.!  It makes everything so much easier having a circle of support like this!

Here is a list of all the blogs for many of my friends over there

Name of the Blog, Blogger, BC Name
http://justjackjack.blogspot.com/  Brandi,  michaelandbrandi
http://mooscrossing.blogspot.com/  Melissa, Lallybroch
http://www.skiingthroughlife.wordpress.com/  montanabound57
http://www.ourthreelittlebirds.blogspot.com/  Ann, atjtnt
www.missfancypants.wordpress.com/  Laura, MissFancyPants
http://tjsstory81408.blogspot.com/  Cindie, beauty3551
www.taylorvillethree21.blogspot.com   Christie, one+twins=3boys
http://muslimmamadsblog.blogspot.com/  Stephanie, shareislam
http://www.littleliamburns.blogspot.com/  Kristin, kandkb
www.kellehampton.com/  Kelle
http://www.theblessingofverity.com/  Susanna, veritysmama
http://jillellingson.wordpress.com/  Jill, LadyEowyn
www.triponthemtrain.blogspot.com/  Robin, triponmtrain
http://billandria.blogspot.com/  Ria,billandria
http://www.thetaooftulips.wordpress.com/  Nicole, edamommie
http://www.swissfamilycarter.blogspot.com/  jakeswife
http://www.unforeseengifts.blogspot.com/  Erin, eringal
http://www.mamamommyme.blogspot.com/  meriah, doozee
http://welcometoourhouse-myjournal.blogspot.com/  Sandi, Dragon73
http://www.blessingsandglory.wordpress.com/  Libby, *MotherHen*
http://wwwourunexpectedjourney.blogspot.com/  Adrienne, sophie&blitz
http://gettingdownwithnate.blogspot.com/  Crista, VTMommaBean
http://tenderspringshoots.blogspot.com/  lambfox7
http://theupsideofdownsyndromethatis.blogspot.com/  Signe, GABGAV1
http://yomammamamma.blogspot.com/  Missy, viviannesmom
http://bloggerssyndrome.blogspot.com/  Carolyn, kiwiaussie
http://www.hapagirlhapafamily.blogspot.com/  Sonia, navywifemomof3
www.thegreskofamily.blogspot.com/  Katie, NewMommy_Jack's

Thursday, March 25, 2010

An Inspiring Week in Kansas City

This weekend, I was invited as a Board Member of DSAGC to attend the Affiliates in Action (AIA) Conference in Kansas City, MO. The event was exhilarating, exciting, inspiring, overwhelming, and fantastic. I think sometimes in Cincinnati it is easy to lose sight of the fact that, thanks to the efforts of so many, we are in the enviable position of having paid staff members who help us support people with Down syndrome - the adults, children and their families, as well as the circle of support around them, including medical professionals, educators, social workers, specialists and interventionists that work with them.

The purpose of AIA is different than any of the other National Down syndrome Organizations (and I’ll write about how I view all of them and their mission at some point soon.) AIA has a sole purpose of allowing the staff and volunteers of the well over 250 local Down syndrome affiliates across the United States to sharing the wealth of information, best practices, and efforts within their organization with each other. AIA became an official National Organization at this meeting, and Connie Hutzel is on the Board as secretary, representing Cincinnati.

The Cincinnati Team

The team from Cincinnati that went to the event included Janet Gora, Pam Rieke, Connie Hutzel, Molly, Phil and Mac Mattheis. I really enjoyed getting to know Pam, who runs our Adult Matters Program better. As the newest member of the DSAGC staff, until this trip I didn’t really know Pam. After spending time with her, I know how committed she is toward finding excellent programs for Adults with Down syndrome (like this program I heard about at AIA). She is a lot of fun to be with, and a person with a lot of positive energy and ideas for making our program (which I learned after being at the AIA meeting is very unique) the leading program for adults in the country.

Prenatal Testing and Informed Consent

I spent a lot of time with several individuals who are part of the informed decision making task force, including Mark Leach, Stephanie Meredith and Nancy Iononne. I had never met Nancy before the AIA meeting, but have communicated with her just about every day, several times a day for the past two years. Nancy and I are “Group Owners” of the Baby Center Down Syndrome Pregnancy Board. This free, online message Board is a place where mothers who have increased risk of having children with Down syndrome or mothers with a confirmed diagnosis come to learn more about Down syndrome. We deal with a number of the fears these new moms have, and help them to sort through those feelings. We also help them navigate the new and unfamiliar world of heart and medical conditions, issues of race and religion and marriage and family and the impact a child with DS will have on their lives. We also began hosting a monthly conference call where the mom’s dial in and discuss what they are going through.

The Adoption Program in Cincinnati is a most valued resource to everyone involved. Robin Steele’s work is admired so much, and pointed to across the country as something that all of the Affiliates appreciate.

There were several sessions, including one by Brian Skotko where the issues of what sort of supports and information will need to be in place nationally and locally once a non-invasive prenatal test comes onto the market. Nancy and Stephanie are working on a publication that is intended to be a “What to Expect When You are Expecting,” only with an emphasis on the factors that come into play when you are expecting a child with Down syndrome. There is much work to do with education Doctors, Nurses, Hospitals, geneticists, and perinatiologists nationally and locally. We are lucky we have a very strong support system in the person of Martha Ostendarp, and it is great to know that we will gain more insights from the other groups as to what is working and being done by other groups across the nation to supplement the things that we are already doing well locally.

Best Practices in Education

I attended a session on a program that is taking place called Partnership in Education by Amy Allison, the Executive Director of the Kansas City group. They have developed quarterly breakfasts with what they have termed “Down Syndrome Specialists” in the school districts throughout their region. The educate these specialists in best practices working with children with Down syndrome, and uses these opportunities to get to know key staff and identify people within each district who can be helpful and open to the messages of the Down syndrome group. They’ve also seen a shift amongst school districts to where they view the local Down syndrome group as a specialist, and a resource. It seems to have built a lot of good will between the association and the schools, and is a program that they have been working with other groups to develop across the country.

The other person I heard at the event was Sue Buckley speak about how she and the DownsEd group have been studying the specific ways that people with Down syndrome learn. She talked a lot about the See and Learn program that Orange County offers for free on their website (www.dsfoc.org/learning_program_registration.php), as well as a symposium they had in Kansas City a few weeks ago. I really like that they have evidence based research on their site available. If you aren’t familiar with their work, I suggest you learn more (http://www.downsed.org/)!

Research and Funding Research

Being relatively new to the world of people with Down syndrome, I was shocked to learn how low the funding for DS research has been, particularly when it comes to the National Institute of Health as it compares to other health issues. A woman from the NIH came to speak for the first time in recent years. Her advice to the DS community is to look toward the efforts of the Autism community for cues on how to mobilize and address the government to demand more research that will benefit the medical needs of Individuals with Down syndrome. There are MANY areas of DS research that need to be addressed, particularly as the population of individuals with Down syndrome is aging. Much is to be learned that will benefit not just the people with Down syndrome, but also the rest of us with the usual number of chromosome. Questions about Alzheimer’s, why people with DS tend not to get solid tumor cancers the way the typical population does, what factors influence cognition, and why do some children with DS get leukemia and have severe heart conditions and other’s don’t are just a few of the types of issues that could be addressed with good research. Funding for research (and lobbying) is a huge issue. I think, though, that there is an exciting groundswell of action that is brewing around this. If you are interested in this area, there is a great need for assistance.


I heard Patricia Bauer speak about the media, social media, and how people with Down syndrome and all disabilities are portrayed in the media. The good news is that there is a shift from pity and overcoming adversity towards issues of justice, fairness and civility. There are many ways individuals locally can work to help shape the conversations – from home and from their computers. Patricia’s site is www.patriciaebauer.com/.


I was struck by how much the great success of our local Buddy Walk influences DSAGC. Talking with people across the country – even individuals in large metropolitan regions with a lot of people – I realized the vast difference there is in having a paid staff who can execute programs vs. relying on parents to do the vast work that can be done to benefit our community. We all need to continually work toward maximizing what we can do with the Walk, as well as look toward creative and interesting ways to develop relationships with people who may not know anyone in their lives personally with Down syndrome, but who can be inspired by people with Down syndrome to the point where they are willing to give of themselves and their pocketbooks. I think that AIA is going to help us as an organization learn to be better at seeking out people who would be interested in planned, long term significant gifts to DSAGC that can allow us to dream big when it comes to supporting people with Down syndrome. Other areas are doing WONDERFUL things in terms of facilities built that uniquely support children and adults with DS, creating fantastic events that inspire their community. We know that people with Down syndrome can inspire. I think we need to challenge ourselves to dream big for Cincinnati, and be as smart as we can in our development efforts.

Our Local and National Government

There are many issues right now that are in front of our elected officials that can impact individuals with Down syndrome. While we were at AIA, we met with the members of ODAN, which is the Ohio Down Syndrome Advocacy Network. It was amazing to me how many local group’s met up with other’s from their state for the first time at the AIA meeting. ODAN has been in existence for a few years, and most recently has taken a map of the state of Ohio and agree who is covering which County so that there is not a single county that isn’t served by one of the groups. We learned about lobbying efforts that are coming up. Also learned the good news that there are FINALLY enough signatures for a Down Syndrome License Plate!

Nationally there are issues like the aforementioned research funding, programs that will allow families to save money for their children with Special needs, the restraint bill, that are on the horizon. This is an area where the voices of individuals with Down syndrome and their parents and loved ones can make a difference.

Karaoke and More

So, now you’ve read what I personally did at AIA. Janet, Pam and Connie all attended different sessions than I did – imagine how much information we all received that we can share to improve DSAGC. The last night of the event featured AIA Idol – which is the Affiliates in Actions tribute to American Idol. I decided to sing – knowing that a trip to next year’s AIA was the prize that was going to be awarded. Janet Gora, our very witty and fearless leader, Dr. Brian Skotko, and Joe Meares from the D.A.D.S. Group all were the judges. I wish I could say I won, but I tied with a woman from Dallas. We had a sing off, and she won (a contributing factor being that there were about 20 people in the room from Texas.) I got second place and a $100 gift card that is now in the hands of Pam to use for the Adult matters program. I have assurances from Janet that next year (if I’m lucky enough to attend AIA again) we will stack the odds in my favor by brining many more people from the state of Ohio to AIA.

On Sunday, we got to attend the World Down Syndrome Awareness Event in Kansas City. They had a WONDERFUL turn out for the event which featured adult advocates telling about their lives, Radio Disney, prizes, vendor booths, face painters and more.  Kansas City was a wonder host city for this event! I had such a great time from the beautiful opening reception to the last minute of the World Down Syndrome Day Event! 

What Can YOU do to help people with Down syndrome?
What DO YOU do to help people with Down syndrome!?
There are so many ways to help - some involve time, some involved money.  I strongly suggest that if you haven't already, contact your local DS group and ask what they need!  I'm happy to help connect anyone with a group if they are interested. 

What do you do right now in your area? What programs do you think are the best where you live?

Thanks for reading about my trip! If you can't tell, I left inspired!

Sunday, March 21, 2010

Saturday, March 20, 2010

AIA - Patricia E. Bauer – Media Outreach 101: Ten things you need to know to work effectively with the media


If you don’t follow Patricia E. Bauer and love someone who has Down syndrome – I strongly suggest you start!

This afternoon I heard Pat talk about how we can work with the media. Things are changing rapidly related to the public conversation about disability. We are getting, in Pat’s words, beyond themes of pity and overcoming adversity, encompassing issues of justice, fairness and civility.

She has a list of iPhone apps on her site, as well as a lot more information.

She talked about the situation with Rahm Emanuel, Rush, Sarah, Family Guy, Bill, and Andrea…

Look at when relevant issues are taking place in the media and find ways to address them.

Help journalists tell compelling stories about real people with Down syndrome. Fundraisers aren’t the best type of stories to try to pass off as News.

Don’t present stereotypes – use people first language…avoid angels or victim mentality…they are fully realized people with rights. Don’t ally closely with a party, but look at the acts of those people.

Too many mixed message to our government cause nothing to happen.

Media isn’t up to speed on our issues, and they don’t have a lot of time to get there. We can help them do their jobs well. Write press releases – help them.

Get pictures and videos to tell your stories. Figure out who would be available to participate and who would be good?

Could AIA put a virtual media library to share ideas of what has worked in local areas?

As a trade group, have three individuals who can address something immediately and how to address the media.

And she gave some good information about managing interviews!

AIA - David Egan

David is a Self Advocate who is going to be on the Board of AIA! I really enjoyed some of the questions he asked during the session on the Media.

- Posted using BlogPress from my iPhone

Location:W 22nd St,Kansas City,United States

It is fun to come to Down syndrome events like this, because you get a chance to see adults with Down syndrome. This morning, at one point the two adults with DS sitting at breakfast with me were both texting on their cell phones!

AIA - Dr. Brian Skotko, DS Prenatal Testing

Lucky to hear one of my favorite speakers on this subject that I feel very passionatly about talk this morning!

Prenatal DX of DS
Screening vs. Prenatal DX
Appetizer vs. Entree

Nancy asked if there is a place that can show what the different things mean. What do all the numbers mean? What is the bottom like? At the end of the day - only the doctor can tell you what it means. Bottom line it is just a chance - talk to the Doc about your specific #'s.

They look on CVS or Amnio under a microscope to decide that yes they do, or no they don't have a child with DS.

Options - some want to know, some want to straight to amnio or CVS - they have risk, even if it is a small risk.

One out of 400 times the Amnio will cause the miscarriage. Many women have lost their pregnancy and found out that the baby didn't have any chromosomal abnormality.

Allele Ratio Analysis
Take blood from the mama and see cell free DNA of the baby. Yes, we can. How do we know if it is moms, or the baby. Are there genes you only use as a fetus. If they find one only as a fetus, you know it is coming from the fetus. Is there one only found on the 21st chromosome? Yes. Find the needle in the haystack - if 3 copies light up, then you know you have a child with DS.

Allele Ratio Analysis
Sequenom - Blood coming from the mom's arm - is there accuracy? Right now it is being questioned, but they think it will be accurate. Performed in the first trimester. Cost will be $2000 - for insurers will be $700
Only will be Trisomy 21 - not reliable for translocation or mosaicism. Results will be given - you do, you don't or we can't tell. They plan for the only DS for now, but more later.

Shotgun Sequencing
Risk - a simple blood test - a ways to go - possible for other trisomies.

You will have a definitive blood test with 100% accuracy.

Are mother making informed decisions?
non-directive counseling, accurate information, up to date, balanced information.

81% of medical students report they get no clinical training re: DS
45% of fellows get barley adequate or non-existent training
28% of AGOG fellows felt they were well qualify in prenatal genetic counseling

Guidelines for delivering news prenatally and postnatally have been agreed recognized, but aren't signed off on.

We need to make sure the guidelines are in the hand of their OBs? They can talk about research and evidence to their own doctors about it.

Brighter-tomorrows.org - interactive online simulation that allows medical professionals to view patient-doctor sessions...

Training was signed into law for hte Prenatally and Postnatally dxed conditions awareness act.

Two states have a local version of the law - Missouri and Virginia.

Gold standard information about prenatal testing for Down syndrome. canisterbooks.com These packets should be offered to every couple with a prenatal DX.

Public Education - NDSS - My Great Story Campaign - in print, and commercials with people talking about DS.

Boxed lunches for the med schools &

Get a grand rounds sessions - do a lecture on Down syndrome - bring in a professional.
Send research to pediatrics and OB/GYN sites.

Does your local group hospital utilize the canisterbooks info?

This was a great session...

Friday, March 19, 2010

Me with the DSAGC team

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Location:W 22nd St,Kansas City,United States

AIA - Event Based Fundraisers for Down Syndrome – Michelle Whitten – ED of Global Down Syndrome Foundation - Colorado

This presentation was REALLY exciting to me!!! My friend Joe could really help DSAGC pull this off in Cincinnati! let me know if you want to help me make this happen in Cincinnati!!!

This was about the Be Yourself, Be Beautiful, Jet Set Fashion Show!

Presentation was given by Sophia’s mom is Michelle. They are new – 501©3

Fundraising and advocacy arm of the Linda Crnic Institute for DS – Government advocacy and Awareness building.

Government advocacy – want to increase NIH funding of basic research for people with DS.
NIH Did increase a million dollars. DS was largest decrease of any NIH funding.

Mentioned Jennifer Bekins as a speaker at one of their events as a “World Renowned Expert!” We love Violette’s Speech Therapist!!!

Be Beautiful Be Yourself Jet Set Fashion Show


How do we begin? Vision, goals, awareness goals, Anchor donor support, good volunteers.

Free/low cost events and do a high end events…

People who can pay should pay, if they can’t they shouldn’t.

Geographical reach.

Understand existing events and what will supplement
What other events are in the community that service people with IDD or overlap with our format?

Give yourself a year from concept to implementation if it is a large scale event

Focus on your Unique Selling Proposition.

Financial Committee Chair. Need up to date information.

In year cash donations are helpful.

Get in kind donations – Venue, food, drink, Valet parking, Speaker/Talent Fees, Silent Auction items, Life Auction items

Keep costs to 25-35% of the revenues

Awareness is the centerpiece of a fundraiser most of the time.

Show off people with Down syndrome front and center.

Aim for low hanging fruit.

Measuring your success. Financial success, attendance rates, awareness building measures.

How often to have the event.

The Fashion show


85-90% of people in the room didn’t know about Down syndrome.

Typical Benefit. Table sponsorships. Fashion Show was great.

Very Successful Event.

Hotel was a better event vs. an air hanger

2008 – sold out 800 attendees, $450,000
2009 – sold out 1200 attendees – lots of comps
Reached goal of 1,000,000

Created an Advocacy award – gala plus theatrical event

Will partner with 5 other city’s.

Developmental Disability awareness day a the zoo.

Make our kids and adults the priority and why we should be the recipients of our philanthropy. They are shocked we are the least funded by NIH. Attract people outside the DS community.

Think about who you are talking to they will not be PC and get it…eventually. Inspire vs. creating pity!

How to get local celebrities? Chad Ocho would love this sort of thing! Keep them as a part of this!
Be Beautiful Be Yourself Jet Set Fashion Show.
They can bring the retail sponsor.
Children’s hospital

Selecting the Ambassador – we need the ambassador as someone who is bringing things to the table. He has a HUGE Family with tentacles in the community into the world.

The kids make the audition like a fashion show. The parents have to spin it correction. Typical kids go through that all the time. Have two understudies.

Donor and Data management. What sorts of tools do you use? Everything is volunteer. Small numbers. Underestimation of our own ability. Never spend more money than you are making. Under promise and over deliver.

Find someone with skill set – big foundations…looking at software in constituency management. Donor Perfect. They have invested time to looking at it. Convio common ground software…they want and event modal. Other thing that it will do give everyone credit for referral credit and soft credit.

Sage is the accounting piece.

Auctions – auctions have plants so they will never be embarrassed.

Give you the table but save the money for the live auction – gives you the minimum $ for the bids…

Auctioned signed shirts. Don’t do live stuff that they don’t know about before the room. Dinner with the Sherriff. Round of golf with a celebrity.

AIA Presentation - Frank Buckley Practical Support For EI and Education

Talk about the US organization and what is happening with DownsEd.

They are developing and publishing resources, provide services.

They want to create a world where knowledgeable ad supportive families and communities nurture the individual potential of every child with Down Syndrome.

Research + Support = Improved outcomes

Research drives everything else and has a high long term impact. The outreach is the publishing.

They have 100,000 beneficiaries – 80% are online. 6000 active customers in 70 countries.


Short books – research summaries and practical guidance
Web editions are freely available on Down Syndrome Online
Education and development
Adult Issues
Health (due late 2010)



Language and reading, speech, memory and numbers programs under development…free programs are available at the site.

There is an online store – www.store.downsedusa.com

Down Syndrome Education Conferences – focused and has tracks for all ages – also has Web Seminars and Advice Groups. Times aren’t great in the US right now.

Research – they are doing an ongoing randomized controlled trial of a language and reading intervention designed for classroom use.

Looking at speech and language, learning and memory, reading, number and math, social skills and behavior.

See and Learn program – want to produce step by step supports – 4 strands of support – At home, Together (support groups), At School, Professional

Tika – could we do a See and Learn East side playgroup?

Q&A – Find a university in the area that would consider accreditation program.

Doing a study with a group with Williams Syndrome.

After you come into a an area – professionals are better equipeted – families are better equipped to help everyone do better. Conference is imparting knowledge and setting people up. On going support are the things they are evolving into an ongoing relationship with the group for supporting early learning programs. Looking at how best to do that. More groups are getting more hands on in providing these services. What is the best model for starting early learning groups? What are the best ways to support after the conference is over.

See and learn program – could people log in and look at the program. This would be a great resource for parents. Starfall.com Having a repository would great for schools, etc.

Is there a training could do locally – train the trainer sort of program? Find a professional in the community who can be advocates of the program - they don’t have a training the trainers and giving them an accreditation.

They need a cascade model – their time is limited. With more funding they can train US people. If we can raise funding to support training the training.

Parents and Partnership program. This would be very valuable. Would identify a DS specialist to get that person trained to understand how to do this. As a community we don’t want to replace services that should be provided by the teachers.

Make sure the tax dollars are used to have best practices – and this is the best practice for DS learning.

Research based best practices – this is the best way to get them to achieve. Get teachers to achieve. More work with national teaching groups for standards for reading and learning for each child.

IEP talk - Ways to give a presumption of need to start with and then fill in with research based supports to fill in the deficits. Is there any IEP guidelines for developing reading/literacy guidelines. There is an IEP Goal Bank – anything as a resource forward ideas to AIA.

MATH - Have they looked into touch math. Sue – not much, they’ve heard presentations. They think it is limited. Math you see. Numicon. Go through the Learning Program to learn about both program.

Austin, TX uses this program one Saturday a month. Getting the data to get national grants could help get everyone access to this. AIA can be a key group for this sort of funding group. The funding model could be a template.

How do you get to the university’s where teachers are being taught to teach them the right way to teach our kids?

Teachers and Doctors look with worst case scenario. Parent has to set the bar high and encourage the teachers to come up.

Value of research related to what do we know about educating people with Down Syndrome is on the website. Not Phonics first. Other parents pull DownsEd research to show what best practices were for IEP. They made it put the research in her file.

Inclusion Data is on the website with the Down Syndrome Research and Practice - go to site with research papers. Volume 9 Issue 3 has Inclusion information – includes data from this study.

AIA - Mark Leach – Why Your Group Should Have A Medical Outreach Program And What You Can Be Doing Right Now

This was a great session

American College of Obstetrics and Gynecology said that everyone regardless of age should get prenatal testing. Doctors changed their behavior to reflect this.

All doctors are offering screening tests to all women in the first trimester. This is the new standard of care. Reason given is “providing the patient with the potential for earlier diagnosis and safer treatment options”

There are a wide range of tests offered and Mark talked about all of them. Sequential screening is presently 95% accurate, Integrated testing is 96% accurate. All key off of the NT screening for reliability factors.

Only way to know for sure is Amniocentesis or CVS. England estimated 2 unaffected fetuses miscarried for every 3 diagnoses with DS. America, Estimated 3 unaffected fetuses miscarried for every live birth of DS.

All of these tests may be irrelevant because of Sequenom. They claim to be working on a non-invasive diagnostic test. The market judges a demand for this test. They mishandled the data, and stock price dropped and SEC investigation took place. They got rid of key people and got sued, etc. settled with shareholders. If they get it to market it will change forever the way pregnant women are tested for DS. Other labs are developing tests.

Pre-implantation genetic diagnosis another trend. Down syndrome is the tip of the iceberg – they will look for Fragile X, William’s Syndrome, etc.

Mother’s with prenatal DX who had pretnatal DX had a better experience. Upside is those moms that continue are wonderfully prepared.

Studies are conflicting as to if there are more or fewer births with children with DS in the US?

California study: Half screen positive oped for amino. At least 61.4% had an elective termination. 1326 expected number of live born DS. 711 live births.

More pregnancies with Children with Down syndrome – more born than historically, but still not as many born as you would expect due to the larger number of mothers of advanced material age.

This is an information issue, not a termination issue.

On the woman’s side…issues with deciding to undergo prenatal testing. Prenatal testing is presented as routine and not requiring an active decision by the patient.

Medical Outreach is KEY. Informed Decision Making Task Force is great. Nancy from the DS Pregnancy board and Janet Gora are on the committee. This is a GREAT group and looking for more outreach…

ACOG Practice Bulletin #88. After the dx of a chromosomal abnormality, people should get accurate information to the patient. They should get this. We want to keep them within their standard of care. Refer to local or national parent support organizations.

We aren’t pro-life/pro-choice, just all about helping them get the best information.

Where is the 80-90% of the termination rate coming from?

How many women if you get a screen positive do not go on to get an invasive test.? In the California study HALF do not get the invasive test.

Looks like the coasts have a much higher termination rate, can be as low as 50% based on little studies of small areas.

Kennedy Brownback bill signed into law in 2008. Purpose to increase referral to support services, provide up to date information about conditions, ensure patients receive information about the accuracy of test. Now it has to be funded.

A woman attending the session told of a genetics specialist in her area who not telling balanced information about DS to her patients, and referring to other states for termination. Mark presented some great information about research based information about the positive things that go along with DS.

Interesting study that shows women and men who terminate because of DS have high levels of post traumatic stress symptoms and symptoms of depression.

For Affiliates – make medical outreach a priority – have a board/staff member responsible for medical outreach, designate funds from fundraisers, check out the beautiful materials at http://canisterbooks.com/outreachprogram.php for start up information.

As Mark said - Cincinnati has the best materials!

www.brightertomorrows.org (Spanish translation available)
www.brighter-tomorrows.net (physician portal)

http://canisterco.com/books/index.html this is the best, gold standard book

Parent advocacy groups really matter when it comes to this subject!

AIA - Teen Talk and Other Social Skills

Teen Talk and Other Social Skills
Building Courses for Teens and Young Adults with DS
Amy Van Bergen
Typically, these are 6-8 week programs geared toward 18-Young adults
Place with a rec room, Wii game, etc.
Doesn’t all have to be structured.

Fall session 6-8 weeks. Spring Session 6-8 weeks. Four weeks is too short.

Who will facilitate it?
Most expensive WOW-em 8 week Teen Talk course will cost no more than $1000 – includes facility rental, paid instructor (s) refreshments, materials, etc. Certificates, etc.

They use a self advocate as an instructor to grow leadership amongst their self advocates.

Curriculum Ideas: Manners, Dating, Making Friends, Grooming, Coping with stress, Who am I? Relationships with Family

Ends with a sit down dinner and dance.

Instructor can’t be a parent who is participant who is doing it. Not parents are better.

You have some parents who have never told their children they have Down syndrome. Consider behavior issues. Provide opportunities for parent interactions and share curriculum with them.

Support those with the most complex needs through this.

Autism groups are all about social skills and building appropriate relationships. Connect with the Autism groups.

Easy grant yes if you can collaborate with other DS groups.

Time is generally about 1-2 hours. Weeknights seem to work better. Sunday afternoons can be ok…

They do a one time advanced training for participants.
They do it in one Central location.

How do they include non-verbal teens? Name Tag…part of peer supports are key.

Is there a teen club in Cincinnati?

Program is geared toward 18-25 year olds.

Home Depot Workshops

These are held in classrooms. Have a meet and greet that includes the parents. Let them know the curriculum, etc. What sorts of conversations they have about are dating and sexuality – appropriate is different for different people.

AIA - Sue Buckley "DS Research - Past, Present, Future"

These will be stream of conscious notes…

Listening to Sue Buckley

Sue Buckley gave the Plenary Session. She gave a history of research. Speech and language – Signing is a benefit as it makes up for the gap between understanding and expressive language. Kids with DS want to communicate (v. kids with Autism)mso they will use gestures to get their point across. Teenagers – know a lot of vocabulary – lots to say but can’t say it clearly. Causes?

Hearing loss plays a part. Slow vocabulary learning may delay grammar. Difficulties with verbal short-term memory. Early speech discrimination? Speech motor issues.

Typical Kids need 200 words in their to start to use ing and possessives, etc. Big vocabulary – need to accelerate this. Need to teach vocabulary quickly to get into the expressed grammar. They look at typical development and compare the critical points of intervention.

Hearing all the sounds in words is critically important.

Working memory
Central Executive
Verbal short term memory – helps make sense of it
Phonological loop – holds the sentences

Episodic buffer

Visual sort term memory – this is the store for keeping visual memory
Visual spatial scratchpad

Working memory – helps you understand what is coming next. DS delayed working memory has an issues with school. We can do something to improve it.

Increase in memory rates helps by learning more vocabulary. Helps your memory system.

Sue Gavocol at York – has some good research – Google it

Visual memory skills are better than verbal. An issue is phonological loop deficit. Speech discrimination with babies. Memory training games are very helpful. Memory training – development new pilot with kids with DS – developed in Sweden.

Reading is a strength. Word reading is a strength from 3 years old. Reading often better than mental age or language measures would predict. Wide range of achievement with reading skills commonly around 7-8 years level but some (10%) reading at age level. Reading comprehension is usually 6-12 months behind word reading ability – memory issues and language delays.

Our kids read by sight longer than other children. Reading instruction may improve language and working memories.

Reading leads to better spoken language.

Boost reading, spoken language or working memory and it boosts all the others.

They learn skills in the same order – sometimes they get out of phase at different order.

Need to get best practices into classrooms. Our kids need to be taught differently. Notion that we’d teach our kids reading earlier isn’t embraced. Special ed teachers have a hard time changing as well. We need more evidence based practice. Measured interventions need to happen.

Need to find things were we can practically put things in practice. Raise expectaions. Target speech language from birth – support all learning visually, train working memory, teach reading and use reading to teach language.

I'll fill in more later!

Some links – www.donwsed.org www.donwsed.org
Research – www.down-syndrome.org
News: blogs.downsed.org/downsed
Sign up for e-mail: blogs.downsed.org/email
Twitter: twitter.com/downsed

Thursday, March 18, 2010

AIA - Me and Nancy

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Location:Grand Blvd,Kansas City,United States

Live from AIA

I'm here!!! Here's the action behind the scenes...

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Location:Main St,Kansas City,United States

Saturday, March 13, 2010

Who I Was Then; Who I Am Now

One of my favorite Down syndrome threads on any message board asked the question who were you before you had your child with Down syndrome, and who are you now that you have them...here is my response:

I'm a person who believes that there is a plan, and that there are reasons for everything in life, but you don't always see them when you are going through them.

I've always been drawn to the most interesting people in the room - not the most typical - the ones I consider most interesting. One of those most interesting people in my life is one of my best friends. I met him in college. He is fun, and funny, and he grew up with two permanent foster brothers (and a sister for a while) with Down syndrome.

I have a nephew (who is a genius in his own special way) with a condition similar to Muscular Dystrophy. My cousin's little piano playing wonder girl has DiGeorge syndrome. I have a co-woerker with a little boy with William's syndrome. I have a friend whose child had neuroblastoma (cancer of the stomach discovered at 8 months old.) A neighbor has a child with CP. I have an uncle with an adult son who is autistic. Disabillity was, if you can imagine, "normal" in our lives.

But, when I got the odds that Violette had a 1 in 16 chance of DS, I was shocked. I thought it would be the worst thing in the world. I had always considered myself the luckiest, most blessed person I knew. For a few weeks after she was born I questioned that.

But I went back to my favorite four words of the Lord's Prayer "Thy will be done" and realized that a person as lucky as I was, as blessed in this world as anyone I've ever met, wouldn't be let down. And I started to think about things.

Every day, more and more I realize that Violette being that 1 in 16 was just another way of God telling me how much he loves me. And I know that having "the 1" is indeed the lucky one - not those other 15 who don't have someone like her in her life.

I can't say that she has changed me - I'm still fundamentally the same person as I was before I had her. I can say, though that she's totally reinforced what I thought before I had her - I am the luckiest person in the world.

Friday, March 5, 2010

Potty Time

I posted this little video of Violette going potty over on the Baby Center Potty Dance Contest and she won! Her little potty going self was up on all of the Community Home Pages for everyone to see! The video got over 1000 views that day, which was pretty cool.

Video aside, we are still a LONG way away from Violette being potty trained...and I have no idea when kids with Down syndrome typically get started, but...here's what I can tell you we did to get started...

1. I tried to play on the visual nature of Down syndrome. So, she has watched me and my two other girls pee on the potty more than once. I know that sounds gross (and my 10 year old didn't just love it, lol), but I thought that seeing what she was supposed to do was a good idea. I also when I was doing it I would sign WATER and IN the Potty as soon as I started peeing.

2. I have found that she likes it to be very quiet, and I'll say things like "Violette is going to go pee pee in the potty" then I'll say "shhhhh, let's listen for Violette's pee pee go to IN the Potty" and I'll sign it too.

3. I have a pee pee song that we sing (to the tune of Twinkle Twinkle)...

Tinkle Tinkle Little V,
How I like to see you pee pee,
Pee pee here and pee pee there
Make a Little pee pee everywhere
pee pee pee pee Little V, How I like to see you pee pee.

4. We have a big book collection and video collection. I have titles from my girlfriend and my other two girls that she sees and watches.

5. Sometimes we play with Elmo or Dora in the bathroom (little bath toys, actually) and I'll ask her to show Elmo (or Boots, or Dora) how to go potty. I'll pretend to be them. She likes to pretend that Boots or Elmo or Dora are going on the potty (she'll hold them over the potty and say "pSSSSSSSSS" - you can hear her do it at the begining of the video.) Seems like sometimes she'll do things for them that she won't do for me (stinker).

6. Take is slow when you need to - she didn't like sitting on it for a while, so I just encouraged her to sit on it with her pants on, then tried again later.

7. Lots of "Big girls go on the potty. When you are a big girl you will go on the potty too!" talk.

8. The biggest issue I think we will have with her is having her tell us when she needs to go (requesting skills are apparently weak in our kids). I got some good advice to get a picture of a potty (or her on the potty) that she can grab when she needs to go. I'm going to laminate some and start taking that picture with us whenever I put her on thinking she needs to go.

9. This is from my other kids - I would tell them that their pee pee LIKES to be in the potty. I've heard some kids think that they are giving a part of themself away by giving up the pee in the bowl, so if you say that is where the pee pee is happy, or where it likes to go, it can help that emotional barrier.

10. She is private about it (which surprised me.) When she wants to poop on the potty, she will cover up my eyes with her hands, or bury her head in my shoulder.

Wow, who knew I had this much to say about potty! I think they all of our kids develop and meet thier milestones on their own timeline, in their own way. I can tell you with no uncertaintly that I NEVER would have dreamed Violette would be doing this well with the potty at this age!