31 for 21: Wordless Tuesday!

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Location:Markeywoods Way,Cincinnati,United States

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!

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?

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/

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!

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!

31 for 21: Happy Halloween!

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

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.

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)