Thursday, December 30, 2010

Thoughts on Down Syndrome Research and Alternative Supplements

There is a nice chart in the Down syndrome Nutrition Handbook that shows many of the common alternative remedies and possible risks.


http://www.downsyndromenutrition.com/store/item_view.asp?estore_itemid=1000004

My rule of thumb with my child is roughly this:

• I learn about a supplement and its potential benefit for people with DS.
• I research the supplement and any evidence based research that it works.
• I research the supplement and how it impacts individuals with DS.
• I research the supplement with the words "scam" after it on google.
• I look up the person who recommends it with the word "quack" after the name on google.
• I consider if I would feel comfortable taking it personally or if I would have my 5 year old take it.
• If I still think it looks like something I would consider giving her, I ask her pediatrician about it.
• If he says no problem to try, I'll give it to her and see how she responds.

That has lead me to DHA (ped's daughter does brain research and told him from the research she has seen, he needed to start taking fish oil, so HE does.) It is basically cod liver oil and both my younger girls take it. We buy this brand: http://www.amazon.com/Nordic-Naturals-Childrens-Dha-liquid/dp/B000ORY45G

That led me to a chewable Methyl B12 (we use this one - http://www.amazon.com/Foods-Methyl-B-12-5000mcg-Lozenges/dp/B003O1R73U)

That led me to occasional caffeine in food (more so when she was nursing through my breastmilk than now)

That led me to CoQ10 through my breastmilk, and I'll start that up again when she can chew a full CoQ10 pill (I didn't like the liquid method.) I used and will use this brand - and may just go ahead and order this one sooner rather than later http://www.epic4health.com/ch60chhidoco.html

I'm still on the fence about Ginkgo - I don't like the potential conflicts for heart/blood if she needed sudden surgery (though I have heard they can do things if they know she is taking it to contradict the issues). I do like the anecdotal reports parents using it give in terms of how it impacts speech. I've gone as far as knowing which brand I would order if I ever do order it - but just haven't pulled the trigger yet - it would be this one! http://www.amazon.com/HoneyCombs-Industries-Liquid-Ginkgo-Extract/dp/B0001ITV42

When Violette was constipated early on, I tried probiotics. She was so sick to her stomach. I stopped those right away. Conventional Miralax for her after that and it worked like a charm! In many cases, the researched medical option is the best!

I think every parent has to make the decisions they feel are best for their child. I know when Violette was first born I checked out every single possible therapy for her. I know parents who use various natural/alternative remedies with their kids and who are quite happy with the results. More power to them for their kids, I say. For me, I take what I consider a more conservative approach, and that is good for me. Who really knows though, if another parents more aggressive approach might not be better for my child?

There have been instances where parents have, through trial and error, and research found non-conventional remedies that have positively changed the reality for all children with certain issues. Will that happen with individuals with DS? Hard to say, but I can't blame them, particularly the ones with medical backgrounds, for trying.

Most of the focus of legitimate, medical research seems to be on treatments that would show small improvements in cognitive skills that would make a big difference for individuals with DS in their day to day lives.

DSRFT has a program called +15 that you can read about here: http://www.dsrtf.org/ They are affiliated with the Stanford DS Research Center where quite a bit of research with Down syndrome mice is taking place.

I'm warming up quite a bit to the push that is going on toward encouraging more National Institute of Health money and research being spent on DS. So much has changed with medicine in the last decade, and so little has been spent on Down syndrome.

This new push will lead to many interesting findings about individuals with Down syndrome, benefits to those of us without DS, and likely some very challenging ethical issues for us as parents about which treatments to give our kids and what the long term value/challenges of the treatments might be.

Also edited to add the work of DS Achieves - they have some great things in the works!

Should continue to be an interesting subject!

Tuesday, December 28, 2010

How we got Violette to wear her glasses

Violette wears Specs4Us Glasses (or glassies, as she likes to call them.) My hints for getting her to wear them? Violette was 2 years, 3 months when she got them. We totally let her control when they went on and when they went off - we encouraged her to put them on herself, and showed her how to fold them up. I had been told they were sturdy, and they are, so I decided to test that, and let her have control over when they were on and when they were off. First thing in the morning the glasses go on, and I'd let her put them on. I'd let her take them off at night. If she took them off, we'd hand them to HER to put back on - not try to put them on her.  We had SO much praise when she put them on, and how great she looked, and everyone we knew who wore glasses wore them while she was getting used to them. We also took her places where she needed to see things far away - and that was so much better with the glasses!


She LOVES her "glassies". She lost them one morning on the bus - they found them at school and she was kissing them when she found them! Let me know how it goes. I really think the Specs4Us were a key.  They are a great brand, with great customer service and lots of sizes and styles. They will work with you where ever you are!



Hope those tips help!

Tuesday, November 23, 2010

Top 12 Reasons You Should Participate In Your Local Down Syndrome Group

I have often heard people say "I went to a playgroup, but I just didn't get anything out of it" or "I don't know why I should take my 4 month old to our local DS group."  Personally I don't understand that.  We have a great local group in Cincinnati in the DSAGC (Down Syndrome Association of Greater Cincinnati)  and last year three friends of mine have restarted a neighborhood group on the Eastside of Cincinnati.  I'm so glad we did.

We didn't have any set course of action - we've just been doing what feels right to us, and planning activites that we enjoy.  We have playgroup, which is kids birth - 5ish, and a Buddy Club that is kids 6-12.  Some activites the whole group does together, some are geared more toward the bigger kids, some the little ones.  We also have mom's night out every month.  We get between 4 and 12 moms every month. Doesn't matter if you can come once or every month - everyone is welcome.  Our activities have ranged from the Museum, to the pumpkin patch, to movie night with the mom's to watch Monica and David, to going to Granny's Garden.  Some months we have great turn out some just a few. But all of them have been fun.

I love our group today.  We know each other, we have a great time, we have birthday parties together, and socialize outside the formal group events.  It is a blast!

So why do I think it is important for our family to participate in our local DS group, and why do I think you might want to as well?  Here are my top reasons for getting involved today!
  1. Meet people who have children older than your's and get a glimse into what is to come
  2. Support people who are new to the Down syndrome community
  3. Have fun - our group isn't like a typical "support group" - we have a good time, laugh and socialize
  4. Give your child with Down syndrome peers who also have Down syndrome
  5. Give your "typical" kids the chance to interact with children their own age with Down syndrome so they can experience "more alike than different" first hand
  6. Give your child with Down syndrome the chance to play with the "typical" siblings their age
  7. Network about Early Intervention in your area
  8. Network about the medical community in your area
  9. Network about IEPs and schools
  10. Learn about programs and opportunities in your area
  11. Become more confident in your ability to successfully parent your child with Down syndrome
  12. Make lifelong friends who you will know and trust in 18 years to come up with innovative housing and social activities for your child
If you don't have a group right now, consider starting one.  If you don't like your group right now, see if you can change it, or do your own thing with a smaller group.  I know I'm glad I did!

Tuesday, October 12, 2010

Saturday, October 9, 2010

31 for 21: A day in the life

So I did a lot today. First up at the crack of dawn to take Viv (our 10 year old) to her Lyric Choir Retreat. The Choir is 5th grade to 8th grade kids, and is through the Cincinnati College Conservatory of Music and it is wonderful.  Then I came home, and called the doctor to see if we could fit Lilianne (our 5 year old) in at the Doctor's office - she's been feverish and not her self.  I went home after dropping off Viv, and Steve made pancakes for all of us. Took Lilianne to the doctor and she had an ear infection (second one ever, second time ever on an antibiotic!)  Lilianne and I went to pick up the perscription at Walgreens (where the pharmacy is like the Cheer's Bar to me - everyone knows my name, lol.)  Then off to the car wash, and got some cookies to take to the 5th grade parent party tonight. Then back up to where the retreat was with my mom and Violette. She loved the concert, and was very relaxed. It is so nice to take a 3 year old someplace like that and know 100% that she will behave, not run around, and not be loud.  Violette fell asleep on me during the beautiful concert, giving me the best hug ever as she did it.  When the concert was over, she bounced right awake and said "HI VIVIANNE!"  We then went down to the Down syndrome Fall party. So much fun - we saw probably 6 self advocates who helped make the party nice, bringing the food down, hiding the goodie bags for the kids, mixing with us.  We then came home, and got ready for the party, and went to the party - it was a beautiful evening in one of Vivianne's best friend's homes.

Was there Down syndrome in my day? Yes, every single day there is Down syndrome in our day. Was my day filled with medical things? Yes, but not a bit of it today had anything to do with Down syndrome or Violette (other than giving her some reflux medicine.)

Not the life I expected I would have parenting Violette and her wonky chromosome (as Vivianne calls it.)  The thing is, it is all normal, but with that little tiny special bit of something extra. Just like Violette!

Thursday, October 7, 2010

31 for 21: I just met a normal child

I just saw a normal child.


She is a girl (or he is a boy.)

She lives in Cincinnati (or someplace in the world, or in a hospital, or on a boat, or in a shelter.)

She is Caucasian (or African American, or Asian, or a mix of ethnicities that is uniquely his own.)

She likes Spongebob (or Blues Clues, or the Nature Channel, or she doesn't watch TV, or his dad can't afford a TV.)

She has blonde hair (or black, or red, or brown, or has lost his hair.)

She has blue eyes (or hazel, or green, or brown, or she doesn't have an eye.)

She loves to play with her sister (or brother, or 16 siblings or he has no siblings.)

She lives with her natural mother and father (or grandmother, or sister, or guardian, or he was adopted.)

She loves her bunny and her baby Addy doll (or his trucks, or his teddy, or he's not particularly attached to anything.)

She likes drawing pictures (or playing soccer, or taking dance lessons, or stacking blocks, or rocking back and forth or playing with a jump rope.)

She loves to eat popsicles (or sushi, or rice, or bananas, or jello, or he is very picky and only eats cheerios.)

She may grow up and marry a man (or she may not marry, or he may be attracted to other men.)

She may struggle at school (or get straight A's, or drop out of school.)

She has Down syndrome (or no syndrome at all, or is in a wheelchair, or was born with her fingers fused together, or is autistic, or can't see, or wears a hearing aide.)

But one thing I know for sure, she is NORMAL.  Have you seen her?

Wednesday, October 6, 2010

All the controversy

I thought a post about all of the areas that I've seen in the Down syndrome world that are somewhat controversial might make an interesting post. I was given some excellent advice when I first had Violette, and that was that we should make the best decisions we can for her, knowing what we know, and not to second guess ourselves.  That said, I have looked at everything on the list, and made decisions on Violette's behalf in most cases not to do any of them, mostly because I can't find enough evidence based research that they work (and with some on the list I've heard for five years that the evidence based research is coming "soon.") 

But on the other hand, there are individuals who I've met who SWEAR that the therapy/approach/tools/supplements listed below work for their child.  So what do you think?  How do you decide? What is the criteria you use to pick which to do? Do you do everything? Nothing, a bit here and there?  Only non-invasive things?  Share with me your thoughts and opinions on this. Oh, and if I'm missing something that has some controversial aspect, please post it with a link- I'm interested!

Speech Therapy
http://www.talktools.com/ - A protocol of whistles and straw therapy.  Since Violette was born they have been saying they are coming out with evidence based research to "prove" that the method works.

This article talks about how non-speech oral motor exercises like what is suggested in Talk Tools does not have evidence based research behind it:
http://communicationskillsforlife.files.wordpress.com/2012/09/parentnsome-asha11-final1.pdf

http://www.speech-language-therapy.com/index.php?option=com_content&view=article&id=49:readings&catid=11:admin&Itemid=108


Neurodevelopmental Approach
http://iahp.org/downsyndrome/
http://ican-do.net/

My understanding is that neurodevelopmentalists advise against signing with your children, though evidence based research through DownsEd and others have proven its effectiveness with children with Down syndrome.

Here are some sites these practices:

http://en.wikipedia.org/wiki/The_Institutes_for_the_Achievement_of_Human_Potential
http://www.quackwatch.com/01QuackeryRelatedTopics/patterning.html


Vitamins/Supplements
Juice Plus+® -is a whole food based product providing the wide array of nutrients found in a variety of nutritious fruits, vegetables, and grains. http://www.juiceplus.com/

NuTriVene-D

They specialize in nutritional and dietary supplements for children and adults with special healthcare needs including Down syndrome.
www.Nutrivene.com/

Naturally Better: Dramatically Improve your Child's Life Naturally
http://naturallybetterkids.com/


http://newdowns.com/


http://www.speechnutrients.com/



But do they work?
Vitamin/Mineral Supplementation: There has been a lot of debate over recent decades regarding the usefulness of vitamin and/or mineral supplementation in people with Down Syndrome. I have collected here a number of scientific articles which address this topic. 

http://www.ds-health.com/vitamin.htm


Nutritional Supplements for Down Syndrome: A Highly Questionable Approach http://www.quackwatch.com/01QuackeryRelatedTopics/down.html


Nutrition Supplements for Down syndrome: What Happens When Hope Meets Hype.
 http://www.ds-health.com/48hrs.htm

A few peer-reviewed, double-blind scientific studies of the efficacy of supplements, vitamins, etc.


http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2267988 
http://www.ddhealthinfo.org/index.pacq?id=44&tier=2 
http://www.medpagetoday.com/Pediatrics/GeneralPediatrics/8468  http://www.nutraingredients.com/Research/Antioxidants-fail-to-benefit-children-with-Down-s-Syndrome
http://www.bmj.com/content/336/7644/594.pdf%2Bhtml

And a counter to the question "Do They Work?"
http://www.gotdownsyndrome.net/rebuttal.html

http://www.down-syndrome.org/perspectives/144/ 


Changing Minds Protocol
A protocol of supplements claiming to improve cognitive functioning. Developed by a Dentist in Texas, CM includes a mix of off label prescription drugs and supplements:
http://www.changingmindsfoundation.org/

Many national and international Down syndrome organizations have questioned this protocol. The official statement on the subject from those organizations can be found here:

http://www.down-syndrome.org/statements/2106/

Green Tea
http://dstoner.net/Math_Science/Downs.html

Other's to add to this list: Coconut Oil,  Longvida Curcumin 


NON-CONVENTIONAL THERAPIES FOR DOWN SYNDROME: 
A REVIEW AND FRAMEWORK FOR DECISION MAKING

http://special-needs.org/upload/DS21.pdf#page=274


COMPLEMENTARY AND ALTERNATIVE THERAPIES
FOR DOWN SYNDROME

http://www.apel-pediatri.it/Materiale/Vaccini/Alternative%20e%20vaccini/2005%20Complementary%20and%20alternative%20therapies%20for%20Down%20syndrome.pdf

Other helpful information: 
Great article on how to read and understand scientific research: http://violentmetaphors.com/2013/08/25/how-to-read-and-understand-a-scientific-paper-2/

Great article listing "questionable, scholarly open-access journals."  If the research is from one of hte journals, beware: http://scholarlyoa.com/individual-journals/


Tuesday, October 5, 2010

31 for 21 - Funny IEP Video...

An IEP, for those of you who don't know, the IEP is an Indivdualized Education Plan (Learn more about it here: http://specialchildren.about.com/od/specialeducation/f/iepfaq01.htm)

This video is really funny - not much like our IEP's, but it will give you an idea of what they are like, and how all parties to them can come across!

Monday, October 4, 2010

31 for 21: Doctor Violette

Miss Violette loves to play! She plays all the time.  Here is a little video of her pretending to be a doctor.

I often will stick my fingers in her ears claiming to look for potatoes.  And I think she was telling me that the baby had BEAUTIFUL ears, not what I said (she signed beautiful when I didn't understand her, lol.)  I'm certain Doctor Shott and Dr. Hermann have told her she has two "beautiful ears" after appointments!


Sunday, October 3, 2010

31 for 21: Happy Halloween!

We love learning the signs with the seasons!  Here are all of the Halloween Signs!

Saturday, October 2, 2010

31 for 21: Keeping Track of Milestones with Down syndrome

So when you have a child with DS, you suddenly become much more aware of milestones, when they are "supposed" to be met, and where your child is compared to that date.  Then for me anyway, the when became much less important than  meeting them eventually has become. So here is a brief rundown of my favorites when it comes to milestones...

Ok, I like the Gross Motor Book from Woodbine  - http://www.woodbinehouse.com/synopsis.asp_Q_product_id_E_0-933149-81-6 - it really is clear and shows the steps in development. I didn't try to read the whole thing, just what was coming up next (I try to stay a step ahead of her, lol.)

As for development in terms of weight and length, I really like this MedCalc interactive growth charts - on the right hand side you see a box you can click for the Down syndrome growth charts - I like comparing the typical to the DS ones.

http://www.medcalc.com/growth/

I also like to keep track of the typical developmental charts - I really try as best as possible to disregard the ranges for meeting those milestones, but like to know "what" as much as "when." I was given a HELP chart by our hospital - there are three of them and they are very comprehensive. They cover social, gross motor, cognative fine motor, self help skills, etc. I asked our EI folks if they could get them for me, and they did free of charge. You can also order them here:

http://www.vort.com/products/150.html

I review the HELP charts every 3-6 months or so to make sure I know the next things developmentally she should/could be doing, and put activities with those sorts of things in front of her to do. I also use the next batch of developmental milestones as a basis for goals for our ISFPs (I'm a bit of a control freak when it comes to ISFPs - I tend to write them with what I think she and we can help her to achieve, and let them rewrite them how they like them.)

Finally, I really like the DownsEd DS Milestone charts - I think they are most comprehensive -

http://www.down-syndrome.org/information/development/early/?page=7

As for the Babies with Down Syndrome book  http://amzn.to/91eWPK - I have it. There are things I like about it, and things I don't like about it. I think the new version is much better than the old, but I'm still a bit lukewarm. I think it was too much information for me when I first got it. Just my personal feelings about it.

Friday, October 1, 2010

31 for 21: Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome

Want to know what I've spent a whole lot of time on lately? Want to know why I haven't been blogging?


I was lucky enough to get involved with a WONDERFUL project with my dear friend and now author Nancy Iannone.  Nancy and another Down syndrome mom friend of mine,  Stephanie Hall Meredith wrote this wonderful, beautiful and free book for mom's who are having babies with Down syndrome! Please support this effort - if you can personally donate, great, if not, please ask your local DS group to consider a donation! We'd love to do even more for mom's who will be having (or get a screen indicating a higher likelehood of having) a baby with Down syndrome!  Special thanks to Kan Hor from Cincinnati Children's Hospital, Violette's wonderful cardiologist for agreeing to review the cardiology section of the book!


Free Down Syndrome Pregnancy Book and Website Launching Today


DownSyndromePregnancy.org will launch on the first day of Down syndrome awareness month. Visitors will be able to download a free pregnancy book.


Sewell, NJ, October 01, 2010 –(PR.com)– Expectant parents have a new resource to help them as the await the birth of a baby with Down syndrome. The website DownSyndromePregnancy.org will launch today, featuring a free downloadable pregnancy book, Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome by Nancy McCrea Iannone and Stephanie Hall Meredith.


In recent years, the area of prenatal testing has become more sophisticated, and more accurate blood tests are on the horizon for next year. Expectant parents learning about a Down syndrome diagnosis spend four to six months waiting for the birth of their baby and wondering about the future. This book is a practical resource for women who are moving forward with a Down syndrome pregnancy.


Iannone and Meredith, both parents of children with Down syndrome, recognized that expectant mothers with a prenatal diagnosis face some unique challenges that were not being specifically addressed in current literature. The authors understand the sense of isolation and grief after receiving a diagnosis and the sense of empowerment and validation that comes from understanding the condition.


The pregnancy book has been reviewed by expectant mothers, prominent leaders in the Down syndrome community, and a distinguished team of medical professionals, including Dr. Brian Skotko, a Clinical Genetics Fellow at the Children’s Hospital Boston, and Dr. Harish Sehdev, a perinatologist and Director of the Prenatal Diagnosis Unit at Pennsylvania Hospital. Other professionals on the review team included obstetrician Dr. Joann Richichi, cardiologist Dr. Kan Hor, genetic counselor Cam Brasington, and breastfeeding specialists Dr. Sarah Riddle and Dr. Sheela Geraghty.


“This publication goes beyond just being a very useful resource for couples; it also has a very human side that comes through openly and compassionately. This book points out many important thoughts that I express to my patients …. The more information that a couple has, the better prepared they are to make it comfortable and enjoyable for their family.” — Dr. Harish Sehdev, perinatologist and Director of the Prenatal Diagnosis Unit at Pennsylvania Hospital.


The audience of the book is specifically expectant mothers who are continuing a pregnancy; the book is not appropriate for women who are still weighing options about their pregnancy.

About DownSyndromePregnancy.org

Down Syndrome Pregnancy, Inc. is a New Jersey non-profit corporation whose purpose is to provide information and support to expectant parents waiting for the birth of a baby with a diagnosis or increased chance of Down syndrome, and the local Down syndrome groups that serve them.

The organization’s website, DownSyndromePregnancy.org, hosts an interactive blog and the book as a free, downloadable guide for expectant mothers. All materials are geared to non-political, honest, compassionate and informative support for those in post-diagnosis pregnancy or waiting until birth for a confirmed diagnosis.


The board of trustees for Down Syndrome Pregnancy, Inc. includes Down syndrome community leaders from all over the nation who provide direct support for expectant parents.


Trustees of Down Syndrome Pregnancy, Inc.

Melissa Kline Skavlem, President (Cincinnati, Ohio)
Stephanie Meredith, M.A., Senior Vice-President (Atlanta, Georgia)
Amy Geoffroy, Senior Vice-President (Central New Jersey, relocating to Oregon)
Sarah Hartway, R.N., M.S., Vice-President (Denver, Colorado)
Heather A. Trammell, Treasurer (Northern Virginia)
“Nancy” Iannone, B.A., J.D., Secretary and Executive Director (Southern New Jersey)

Tuesday, August 17, 2010

Imitation - not only a form of flattery, but a skill we work on a lot with Violette!

http://www.down-syndrome.org/reviews/2076/ 
I heard the authors of the article above in Boston a few years ago. The article is pretty academic, but has some great information. The part about teaching imitation is particularly informative (I've written the authors and asked them why they don't have their research more widely distributed, and they offered to send me a few pdfs of presentations they've made - I haven't seen them yet but will try to get permission to link to them when I do!)

Anyway, they talk alot about teaching skills for imitation. Banging the table, rubbing your nose, patting your head - lots of silly stuff. Helping out if the child doesn't do it to get them to do it so they get the idea that when you do something, they should try to do the same thing. Our kids apparently have a deficit in imitation skills, and until they learn to imitate and really get the idea of it, imitating speech and sounds are going to be difficult.

After I heard the session I spent a lot of time working with Violette on improving her imitation skills. I know after I learned about how important that skill was toward getting her to do lots of other things and really worked on it I saw a big difference in her ability to imitate sounds (or at least try to!)

We played/sang "can you do what I do? I do? I do? Can you do what I do? Tap Tap tap (where it says "Tap Tap Tap we put in whatever we want her to do.)

Now I can say "do X Violette" and she knows what it means to do it.  She doesn't always do it right away, but eventually she tries.  The good thing about teaching imitation is it is a skill that carries through so many other areas - writing, speaking, drawing, movements, etc. all can benefit from strong imitation skills!

Monday, August 2, 2010

The First Year With Violette: What worked, what I wish I had done differently

A mom came on the Baby Center Down syndrome board asking what the more experienced moms felt they did right and what they wish they had done the first year...here's my response...so I don't forget it!

I think it is really important to remember that you are raising a whole child. That first year, it is so easy to focus on the big milestones which are mostly gross motor things - rolling over (which usually comes pretty easy to our lo's), sitting up, crawling, standing, walking. Those things, as exciting as they are really aren't a race to get there - from what Pat Widners says, you want them to learn to do them right with good form, not just do them. If your child takes his or her time doing them, be patient and know they very likely will do them eventually. But, if your child isn't meeting those on the typical time table, you can still think of what sorts of things a child that age would be doing, and bring that sort of activity to your child. For example - if they aren't crawling, move them around to places you think they would be exploring naturally, and then let them explore there. If they'd be making a mess, give them an opporunity to make a mess. You may have to bring more experiences to the child so they can learn all the other things you learn when you are mobile.

I always wanted to see the developmental milestone charts to know what she should be doing (the HELP Charts are really good ones to get your hands on if you are interested.) She didn't meet everything when she was supposed to, but I could try to put developmentally appropriate things in front of her to at least expose her to them - so in some cases she surprised me by being able to do things on time, and in other cases, she was at least exposed to them, and I could re-introduce them or show them to her when she was more ready to do it.

I was told Tummy time was the single most important thing I could do for her early on. Apparently a strong core helps with everything - crawling, writing, walking, you name it. I was told something like 20 minutes on her tummy every waking hour. I tried the best I could to make sure that happened...

Signing. I read a lot of research early on that said that signing with your child with Down syndrome was a great thing to do. We had signed more, please and all done with my middle child, and I decided that we, as a family, were going to learn sign language. I was worried that she might never talk (for some reason) and wanted to be able to converse with her if she didn't. Plus I knew that learning another language is really good for children's brains, and decided that it would be a great exercise for my older children. We made it a family game. She knows over 200 signs, and has in the last several weeks been dropping the signs rapidly in favor of talking. We learned through Signing Time videos and Signing Savvy. We learned gradually, and I tried to mimic our sign acquisition to parallel the order a child learns language.

Worked her hands. I had a long scarf with fringe I'd let her pull on, and I'd pull back. Seems like we did that alot when she was about 6 months old waiting at therapy and doctors appointments.

Therapy should always be fun (and if you find a therapist who thinks and behaves otherwise, I'd probably find a new one) in my opinion. Any "work" you do with the baby at home should be fun. There can be a purpose behind everything you do, and you can do purposeful things all the time, even if you have a busy life. But I honestly believe that to your child (and your other children if you have them) it should only feel like you are the most fun parent in the whole world. Everything everything everything is a game, or play or being silly with me. But a lot of it has a purpose.

Eye tracking - I had a little mouse rattle that made a noise that I would play a game with Violette with from the first time I saw she could follow something with her eyes. I moved very slowly at first - up and down, left and right. Then I built up to adding corner to corner, circles, etc. I started all of this very slowly, and built up to very very very quickly that she could follow what I was doing. We started with short sessions, and built up to pretty long ones over time. I wanted her eyes to "look sharp" whatever that means, and thought if I could build up the speed she could follow things early on it would be a helpful muscle to build. The sound plus the colorful mouse were attractive to her, and I think she really liked that game a lot.

I did think of one regret - I heard an excellent session when she was about 2 related to teaching imitation skills. Apparently our kids have a hard time mimicking what other people are doing. In the session she talked about a very specific procedure of putting the child in the high chair, and encouraging them to imitate. So If I bang the high chair, then I say "your turn" and wait for the child to do it. If they don't, I prompt them to do it. You keep building on that until they start learning how to imitate motions and getting the idea of that. Then you work to have the child imitate sounds. Learning about improving her skills at imitating was really helpful to me, and helpful for me to help her learning to talk.

Those were the big things I could think of - any other bloggers want to contribute their list of things that worked (or things they wish they had known)?

Saturday, July 17, 2010

Friday, July 16, 2010

Opening party




- Posted using BlogPress from my iPhone

NDSC Orlando




- Posted using BlogPress from my iPhone

Sunday, June 27, 2010

Video of Violette with her Favorite Birthday Present

Violette had a great Birthday, and I'll be posting a bit more about her turning three soon, but I thought you'd enjoy seeing her with her favorite present that her sweet Godmother Julie gave her!

Sunday, June 13, 2010

A Horrible Monster in my house!

Watch out - those horrible monsters can be pretty scary.  And why again did I think she wouldn't have as much personality as the other girls?

Saturday, May 1, 2010

Down Syndrome Pregnancy: 54 Things To Do Instead of Worrying

Everday, I talk to a number of mom's who are passing time until the birth of their child with Down syndrome, or they are waiting to find out if their child with have Down syndrome. I remember how long that time can seem. I also remember that at the end of a long day, I'd find myself on the computer looking for information. Sometimes, since I didn't know where to look I ended up at highly medical sites that scared me. I decided to put together a list of 51 things to do instead of worry about having a child with Down syndrome while you are waiting. I hope you enjoy it, and I hope that lots of people will contribute other ideas of what worked for them.

Don't feel like you have to go through the whole list in one sitting, and if something on here doesn't make you happy, move on to something else. These are all the things I wish I had been thinking, doing and looking at instead of worrying about my child when I was waiting out my 1 in 16 odds that she would have Down syndrome.

1. Look for pictures of children with Down syndrome who look like people in your family. When you start looking at a lot of people with Down syndrome and their families they start looking very different from one another - your baby will too!

2. Make a gratitude journal http://www.iamthankful.com/gratitude-journal/

3. Visit Happy News http://www.happynews.com/

4. Watch the Natalie Merchant Wonder Video http://music.aol.com/video/wonder/natalie-merchant/1102808

5. Read the research behind signing to your child with Down syndrome – http://www.riverbendds.org/useofsigns.html

6. Bookmark the Medcalc Growth Chart - you can use it no matter how many chromosomes the baby has http://www.medcalc.com/growth/

7. Learn a new sign: Milk http://www.signingtime.com/blog/2010/02/sign-of-the-week-milk/

8. Learn a new sign: Baby http://www.signingsavvy.com/wordlist/13/BABY/230

9. Learn a new sign: Drink http://www.signingtime.com/blog/2010/04/sign-of-the-week-drink/

10. Learn a new sign: Eat http://www.signingsavvy.com/wordlist/13/EAT/252

11. Learn a new sign: More http://www.signingsavvy.com/sign/MORE/272/1

12. Learn a new sign: All Done http://www.signingsavvy.com/search.php?search=all+done&find=1

13. Check out all the baby signs on Signing Savvy - http://www.signingsavvy.com/wordlist/babysigns

14. Visit http://www.bored.com/

15. Think of names for the baby

16. Research your local DS group http://www.dsaia.org/joomla/index.php/affiliate-directory.html

17. Learn about the Buddy Walk http://www.buddywalk.org/

18. Read my blog post about things adults with Down syndrome can do http://yomammamamma.blogspot.com/2009/10/31-for-21-what-can-person-with-down.html

19. Read my blog post about business’ run by people with Down syndrome http://yomammamamma.blogspot.com/2009/12/businesses-owned-by-people-with-down.html

20. Read Praying for Patience by Rachel Coleman, founder of Signing Time http://www.rachelcoleman.com/2007/05/09/mothers-day-essay-i-won/

21. Read Rachel Coleman’s “strong enough to be your mother” blog post and be inspired that you have that kind of strength in you http://www.rachelcoleman.com/2008/07/15/strong-enough-to-be-your-mom/

22. Go shopping and purchase something for the baby that you think Angelina Jolie or the Queen would buy for their children. You child deserves something nice too!

23. Write a list of the things you are most scared about, and post it over on the Baby Center Down syndrome Pregnancy board and let them help you sort out which ones are legitimate and which you don’t need to worry about so much http://community.babycenter.com/groups/a14515/down_syndrome_pregnancy

24. Read about the Pujols Foundation http://www.pujolsfamilyfoundation.org/about/

25. Write down dreams you had for yourself and your family before you found out and picture doing them again.

26. Think of one thing you love to do, and Google that hobby plus the world Down syndrome. I bet you can find someone with DS doing it!

27. Visit The Desk and get a glimpse at the Medicaid services that may be available in your state. If you are worried about finances, this is a good place to start learning. http://www.thedesk.info/

28. Learn about the Early Intervention Program in your state. http://www.nectac.org/contact/ptccoord.asp#OH

29. Buy a Webkinz pet and play games in Webkinz World. Ok, it is for kids, but sometimes just having something to keep your mind and your hands busy is helpful! You can get one at most Hallmark Stores

30. Visit this Special Needs Dictionary to know the different terms you might hear with a child with Down syndrome http://earlychildhoodmichigan.org/Dictionary.htm

31. Visit Conny Wenk’s blog and check out all of her beautiful photographs of children with Down syndrome. http://connywenk.blogspot.com/

32. Read some of the Bridget’s Light blog http://bridgets-light.blogspot.com/

33. Read Kelle Hampton’s birth story. Poke around other posts on her site to see how Nella is doing. http://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html

34. Watch my favorite signing video, Caterpillar Dreams: www.youtube.com/watch?v=gGF3iC0o_1s

35. Think signing isn’t cool? Watch this - http://www.youtube.com/watch?v=QmKnQjBf8wM

36. Another think signing isn’t cool? Watch this - http://www.youtube.com/watch?v=CCZkQ_s-Bdk&feature=related

37. Learn about the wonderful Karen Gaffney - www.karengaffneyfoundation.com/

38. Learn about current Down syndrome research - www.dsrtf.org/

39. Read the book Gifts http://www.amazon.com/Gifts-Mothers-Reflect-Children-Syndrome/dp/1890627852

40. People may not know what sorts of things would be useful to you and your new baby – check out this list - http://yomammamamma.blogspot.com/2009/05/things-you-might-want-if-your-baby-has.html

41. Are you worried about “doing it all” once the baby comes? Consider a program like E-mealz http://www.e-mealz.com/ , dine without whine http://www.dinewithoutwhine.com/  or Saving Dinner http://www.savingdinner.com/  – a quick search on menu planning will help you come up with other ideas as well.

42. Watch an episode of The Specials http://www.the-specials.com/ . Try to see past the speech difficulties the individuals have, and watch how they are living their life. Changed my mind about "group homes" forever.

43. Read Jennifer Bekin’s story and bookmark her blog – Jenn is a speech therapist with 3 siblings with Down syndrome. http://communicationskillsforlife.wordpress.com/about/

44. Read my document on Social Media and Down syndrome (I'll link to it soon!)

45. Enjoy this motivation speaker talking about his life http://www.youtube.com/watch?v=ROWbyKVLYr8&feature=player_embedded

46. Read 10 ways a baby with Down syndrome will improve your life http://hubpages.com/hub/10-Ways-A-Baby-With-Down-Syndrome-Will-Improve-Your-Life

47. Read about the Traveling Afgan Project, making it’s way around the world! http://www.thet21travelingafghanproject.com/2009/02/t21-travelling-afghan.html  

48. Check out the inspirational stories, poems and quotes on the CafĂ© Mom message board. You’ll love some and dislike others – try to figure out why you feel how you do – it will help you sort out your feelings about parenting your child www.cafemom.com/group/1152/forums/read/1062122/Inspirational_Stories_Poems_and_Quotes

49. Watch some funny clean videos http://funnycleanvideoclips.com/

50. Life with Down Syndrome doesn’t mean you won’t laugh! http://www.unomas21.com/amusing.htm

51. Visit Down Right Beautiful!  What a beautiful Site! http://www.downrightbeautiful.org/

52. Read about Dr. Brian Skotko - a wonderful person (he was a very complimentary judge after my Karaoke at a DS event), a Harvard educated Doctor, a specialist in Down syndrome and the brother of a woman with Down Syndrome - I'm a BIG fan - http://www.brianskotko.com/

53. Learn about College opportunities for people with Down syndrome and other intellectual disabilities! http://www.thinkcollege.net/

54.  Watch this family in action and see if you can picture your life being this normal - including Down syndrome - http://vimeo.com/45152895

Tuesday, April 27, 2010

Saturday, April 10, 2010

The letter I sent letting people know Miss V had Down syndrome

Trying to make sure I have a place to point new mom's if they want to know how I told people...who knew a few years ago I'd want access to all this stuff!

Dear Everybody,
As you know, Baby Violette Hope showed up on Tuesday, June 26 at about 2:15 in the morning. She is sweet and wonderful and beautiful and a blessing and she has Down syndrome.
I had quite a few prenatal screens and feel very confident that her body parts are all in good shape. Any of the typical physical characteristics that can cause problems for babies with Down syndrome aren't showing up - her tone is excellent, her heart is good, her suck is good, her ears are good, etc. etc. The doctor we met with this morning told us that her good muscle tone is one of the only early indicators that they have about the severity of impact the Down syndrome will have on her, and that she looks terrific to him.
I had many preconceived notions of what Down syndrome was all about, and from what I’ve learned this week, I was wrong about quite a few things and was putting some limits on Violet that don’t need to be there. There are a lot of early interventions that have led many people with Down syndrome to have very full lives, that include independent living, working, even secondary education.

From everything my husband and I have been told, the best thing for us to do is welcome her as a part of our family and treat her like we did our other beautiful babies. That’s pretty easy. We are very joyous to have her as part of our lives.

I plan on continuing working and doing what I’ve been doing here at XXXX – and everyone I’ve talked to in the medical community seems to see no reason at all to change that plan. She’s even been given the green light so far to come with me (and my mother) to Las Vegas when I visit the XXX tradeshow in September!

We have high hopes that she will lead a full and wonderful life.

My husband and I really appreciate everyone’s support and good wishes!

Missy

Thursday, April 8, 2010

Great iPhone apps

A few great iPhone apps to look at geared toward the two-three year old set! Some are specific to Down syndrome...

Learn To Talk by Learntotalk.com

Going places by Model Me Kids

iPlay and Learn by Parents Magazine

Signing Time

Adventures by Big Al 3D

IEP Checklist by PEATC

Actions by Kindergarten.com

Emotions by Kindergarten.com







-- Post From My iPhone

Location:Ohio Pike,Forestville,United States

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.

Media

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/.

Money

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

www.patriciaebauer.com

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
www.artemishealthing.com
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
www.artemishealthing.com
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


- Posted using BlogPress from my iPhone

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

http://www.coloradojetset.com/

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.

Homework!
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

ColoradoJetSet.com

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.