Book Review: Embracing God's Purpose for My Special Child

Your child is God's tool, His special agent, to make you the person He wants you to be.

Embracing God's Purpose for My Special Child is a very personal and prayerful memoir and "parenting guide" written by Malu Tiongson-Ortiz, a Filipino mom and advocate for Down syndrome in the Philippines. Her 3rd and youngest child, Clarissa, has Down syndrome and is 24 years old this year.

Malu Tiongson-Ortiz's religious (Catholic/ Christian) outlook about her experiences with raising Clarissa makes the perspectives in the book different from any other Down syndrome-related memoir I have read so far. She writes about her experience with receiving the diagnosis, various people she has connected with, financial challenges, health, homeschooling, adolescence, sexuality, and how we are stewards, not owners, of our children. It seems the target readers are Filipinos in the Philippines with references to local resources and the section about wills and legal matters only applies within the Philippines.

Reading a non-US based publication was very interesting for me because it offered glimpses and insights into life with Down syndrome in the Philippines. The awareness levels are somewhat different between the US and the Philippines. For example, it seems that first-people language is advocated here where it may not be (yet) in the Philippines. But that may also be due to language translation or pragmatics. Be forewarned that if you are sensitive and easily offended by terms like "Down syndrome daughter", no matter what the circumstance or context, then this book may not be a good reading choice.

Another example is in the local beliefs and misconceptions (many ridiculous ones) about Down syndrome. One mom thought that kids with Down syndrome were only "born to the rich". The author mentions that many believe Down syndrome is a result of an incestuous marriage or karma or punishment from God.

What is most inspiring is seeing how faith can mold beliefs and parenting styles. And while cultural, religious, and socioeconomic differences may provide varying landscapes for Down syndrome in each country, the common denominator that stands out is how we all want what is best for our child with Down syndrome and that we will go the extra mile, and then some.

God's Purposes
Since the Philippines is the 3rd most populous Catholic country in the world, with 75.5 million Catholics in a little over 90 million total population (fact as of February 2011), it's just natural to expect this memoir to be mainly focused on the author's personal reflections and realizations of how God would want us to raise our children with Down syndrome. And needless to say, the author believes that "No special child is an accident".

There are fascinating, heart-wrenching, and inspiring stories of other children and families whom she had the pleasure of meeting in her journey. She writes about how her faith and character were molded throughout her journey, especially the most trying and difficult times. Her work shows an inner peace and strength in believing that God has a special purpose for each child with special needs in every aspect of life.

Drawing upon her own and others' experiences, she shares her personal reflections of God's purposes. "God gave us our special child...

"...to teach us to seek Him and pray to Him."

"...to mold our character."

"...to understand the value of life."

"...so we may learn to have hope."

"...to teach us to have compassion."

"...to teach us to choose better priorities."

"...to teach us to count our blessings."

The reference to bible verses may alienate non-Catholic/ non-Christian readers who are not familiar with bible content but perhaps they can still find appreciation, inspiration, and encouragement within the stories shared in the book. Or perhaps think of how it would relate to their own religions.

Overall, the author serves up a good dose of honesty and positivity. I enjoyed reading it.

Would you like to read it?
I couldn't find this book on amazon or other US online bookstore. If you are interested in borrowing this book from me, please leave a comment on this post or contact me.

Conversation Book: Driving Grandma's Car

There seem to be more individuals with Down syndrome who do not get driver's licenses than those who do. Yes, there are people with Down syndrome who have learned to drive and who have a driver's license. Some of these inspiring, hard-working individuals are on the Self-Advocate Council at the National Down Syndrome Congress. Click here to read about them.

Will Matthew ever learn to drive? We don't know yet.

Will learning to drive be one of his dreams? We don't know either. That's for him to figure out.

There are people without Down syndrome, typically developing people, who choose not to drive for various reasons.

At this point in time, our focus is on providing learning opportunities that would further his development so that later on in life, he will have more choices available to him. And I hope that one of those choices would be whether to drive or not.

So for now, he will be driving Grandma's car.

National Geographic Kids & Down Syndrome

Tonight, after a tiring and somewhat frustrating day, I was browsing the National Geographic Kids website for books, pictures, and videos to show Matthew. Several things looked great for Matthew such as the National Geographic Little Kids magazine, some short videos, and real-life photos of animals and nature. Matthew owns "Safari" from the Kids Readers books and likes it. Maybe it was time to get more titles from this series.

One little gem of inspiration (and Down syndrome advocacy) was in the News-People & Places section. I Have Down Syndrome--Know Me Before You Judge Me by Melissa Riggio. I absolutely loved what she wrote at the end about not able to change the fact that she has Down syndrome, but how she would change how people think of her. She also wrote, "Treat me with respect, and accept me for who I am. Most important, just be my friend. After all, I would do the same for you."

After reading her piece, I continued to browse the site for fun stuff for Matthew. But this time, with a smiling heart.

Updated Health Guidelines for Children With Down Syndrome

Hot off the press (as of July 25, 2011): "Clinical Report - Health Supervision For Children With Down Syndrome". We will be sending a copy to Matthew's pediatrician. I am assuming that most doctors are appreciative of updated and important information shared with them.

Book Review: Count Us In - Growing Up With Down Syndrome

"Give a baby with a disability a chance to grow a full life. To experience a half-full glass instead of the half-empty glass. And think of your abilities, not your disabilities" - Jason Kingsley (direct quote from the book).

Jason Kingsley and Mitchell Levitz - two young men with Down syndrome - were born in the early 70's, an era when doctors mainly suggested institutions as the main destination for babies with Down syndrome. Their parents disagreed and gave their sons opportunities to develop their potentials. Jason and Mitchell authored "Count Us In: Growing Up With Down Syndrome", which was published in 1994, when Jason was 20 and Mitchell, 23.

The book is in Jason and Mitchell's own words and is a compilation of transcripts of their unedited conversations, bringing out their personalities, wit, and humor. I found it fascinating to learn about their challenges, accomplishments, and general outlook in life through their eyes and minds. Topics included their friendship, their feelings and thoughts about having Down syndrome, their ideas of fun, girls, sex, marriage, children, beliefs, traditions, politics, their experience with loss and grief, their journey to becoming independent, and their dreams for their future.

Everyone - with or without Down syndrome - is different. Jason and Mitchell's opinions and perspectives may not be shared by other people with Down syndrome. In this regard, what a powerful statement this book makes in advocating the full potential of people with Down syndrome! It quashes the stereotypical views that people with Down syndrome "are always happy" or "are suffering". It presents people with Down syndrome as fully capable of learning and having their own opinions and dreams, just like everyone else.

Having Down syndrome may mean being on a slower path to a destination but in life, isn't how we get there more important than when we get there?


Have you read it? What did you think?

2-Day Garage Sale Benefit for Down Syndrome Research

We had a successful 2-day garage sale benefit on May 14 & 15, Saturday & Sunday. We are truly humbled and thankful for the outpouring of support from everyone who offered helpful suggestions and ideas, took time out of their day to help, donated, and made the event possible and successful. This is part of our efforts to raise funds for the Down Syndrome Research and Treatment Foundation's (DSRTF) +15 campaign.

The DSRTF is a national non-profit organization that funds important biomedical research projects around the country. These research projects are focused on developing treatments that would improve cognition and prevent the early onset of Alzheimer's for thousands of individuals with Down syndrome. I love how they don't prioritize prenatal diagnostic-type of research unlike the National Institutes of Health (NIH), who directs majority of federal funding (what little is allocated for Down syndrome) toward prenatal testing for Down syndrome.

The National Down Syndrome Society (NDSS) cites that "25% or more of individuals with Down syndrome over age 35 show clinical signs and symptoms of Alzheimer's-type dementia. In the general population, Alzheimer's disease does not usually develop before age 50."

I don't know what the future holds for Matthew. I know that I will be 65 years old when he turns 35. I know I would be very sad if he develops Alzheimer's early and lessens his ability to live independently, especially since it may take more work and time for him to achieve independence. If that was the case, he would've worked so hard at something only to enjoy it for a fleeting moment. I know that's probably excaggerating and worrying myself for no reason but as his mother, it's my job to worry, isn't it? If he happens to be 1 in the 25% estimated individuals who develops Alzheimer's early, it would be nice to have some research to know if it is preventable and if so, how to prevent it.

50 PERCENT CHANCE OF SUN?
The sun never appeared and it drizzled and misted all day, both days. But despite the rain and cold (high 50's to 60's), we had a relatively great turnout and raised a total of $686.45 selling kids' clothes, food, books, and toys. YAY!! This catapulted us to achieving 25% of our $5,000 goal.

THE PROCESS
The two weeks leading up to the garage sale weekend were hectic for everyone involved.

I took care of flyers, garage sale signs, donations for the raffle, the garage sale ad in the newspaper and craigslist, tagged some items, and put up garage sale signs at both entrances to our subdivision. I would've put up more if there was enough time and if I didn't have the kids with me. I made sure the newspaper ad had a line "Benefit for Down syndrome."

My wonderful sister-in-law took care of presorting all 30+ big bags of clothes and pricing the items individually. She helped me get the word out on facebook. She made some yummy Thai sticky rice (the recipe is in her cookbook "Introduction to Asian Cooking" by Kristin Enkvetchakul, published in 2006). She and her husband let us borrow their awesome commercial-grade hotdog machine.

Bill shuttled the boxes of clothes and other supplies from her house to ours and we set it all up in our garage the night before. If I were smarter, I would've started setting everything up in the garage 2 or 3 nights before. I also baked chocolate crinkles the night before. We ended up going to bed at 2am. Then I got up at 5am to straighten whatever I could before we opened at 7am.

Saturday was very busy and I was thankful to have wonderful friends and family to help. We were on our feet all day. I didn't even have time to take pictures during the sale so I took pictures after everyone had left.

Most of the people whom we didn't know personally found our ad in the newspaper. One couple found my ad on craigslist and came specifically because I had advertised it as a benefit for Down syndrome. They lived in a neighboring city and have a daughter with Down syndrome. It was wonderful to make yet another DS connection.

On another note, my thoughtful nephew made this sign to put on the door to the kitchen. It says, "Employees only."

WHAT'S THIS ABOUT PRIZES?
I had a radical idea to offer prizes at our garage sale. Shoppers are issued a raffle ticket for every $5 spent. It actually helped encourage most people to either buy more or donate what would've been their change. We also had a few friends come to donate but not buy anything. 2 raffle tickets were issued for every $5 donated (without a purchase).

There were 10 prize buckets to choose from. The most popular one was for movie tickets, followed by restaurant gift certificates. I am extremely thankful for the prizes that were donated by generous business owners and friends in the area.

Matthew drew the winners at the end of day 2 of the garage sale. It was the best random way to pick winners and a great way to practice some functional math skills, i.e. I'd ask him to give me one ticket only from each little tub. If he gave me 2 or more, I wouldn't take any tickets from him.

MAY 21, DAY 3
We've decided to do another garage sale this Saturday, May 21, while we still have everything set-up in our garage and will be adding more to what we have. We It will sort of symbolic of Down syndrome with the triplication of the 21st chromosome. The date "21" would signify the 21st chromosome and it would be the 3rd day for our garage sale.

Supporting Cognition Research via plus15

Sharing our personal stories, photos, and videos has raised awareness about Down syndrome. We hope you, our dear readers, have enjoyed following along as much as we have enjoyed sharing and meeting friends on this journey. Thanks for your friendship and encouragement. Thanks for reading!

Please consider helping us make a bigger difference in this world through the plus15 campaign. By supporting biomedical research to improve cognition, including learning, memory, and speech, by 15 percent, you will give Matthew and our friends with Down syndrome, more opportunities to full inclusion - academically and socially - and independent living as adults.

Our involvement in plus15 has a two-fold benefit. This fundraiser is a contest. The top fundraiser will receive an Apple iPad. IF we win, we will donate the iPad to Matthew’s preschool. Your contribution could help more children with special needs, such as Autism, who can benefit from its use during their therapy time. Please help us win the iPad for the kids!

We really appreciate your interest in helping!

Facts to Consider
Studies show that the life expectancy of someone living with Down syndrome has increased from 25 years to over 50 or 60 years over the past 3 decades. But cognitive abilities have not improved at a similar pace. Current advances made in cognitive research are promising of positive change, such as avoiding the early onset of Alzheimer’s disease. The National Down Syndrome Society (NDSS) cites that “25 percent or more of individuals with Down syndrome over age 35 show clinical signs and symptoms of Alzheimer's-type dementia. In the general population, Alzheimer's disease does not usually develop before age 50.”

Federal funding for Down syndrome research is only $55 per person. That's about 95% less on average than what the government spends on research for similar disabilities. A big chunk of federal funds goes to research to develop more tests to merely detect Down syndrome prenatally, instead of toward cognition research. We have collated data in the following tables as gathered from the sources listed below.

2008-2010 NIH Funding for Various Medical Conditions

CONDITION	US POPULATION (est)	2008 NIH FUNDING Million $	2009 NIH FUNDING Million $	2010 NIH FUNDING Million $
Cystic Fibrosis	30,000	90	86	86
Parkinson's	1,500,000	152	162	154
ALS	30,000	43	43	47
Huntington's	30,000	51	57	65
Multiple Sclerosis	400,000	169	137	133
Crohn's Disease	400,000	51	55	66
Down Syndrome	400,000	17	18	22
Fragile X	17,000	26	27	25
Autism	560,000	118	132	160
Duchenne MD	45,350	22	27	33

2008-2010 NIH $ per Capita Amount for Various Medical Conditions

CONDITION	US POPULATION (est)	2008 NIH $ per CAPITA AMOUNT	2009 NIH $ per CAPITA AMOUNT	2010 NIH $ per CAPITA AMOUNT
Cystic Fibrosis	30,000	3,000	2,866	2,866
Parkinson's	1,500,000	101	108	103
ALS	30,000	1,433	1,433	1,567
Huntington's	30,000	1,700	1,900	2,167
Multiple Sclerosis	400,000	422	343	333
Crohn's Disease	400,000	128	138	165
Down Syndrome	400,000	40	45	55
Fragile X	17,000	1,529	1,588	1,471
Autism	560,000	211	236	286
Duchenne MD	45,350	485	595	728

Sources:
2008 data from Dr. Brian Skotko’s testimony before the Down Syndrome Congressional Caucus in February 2009 (http://www.brianskotko.com/images/stories/Files/down_syndrome_congressional_caucus_feb_09.pdf) as provided by M.M. Harpold, DSRTF based on 2009 NIH Data (http://report.nih.gov/rcdc/categories/).
2009 & 2010 data sourced and adapted from 2011 NIH (National Institutes of Health: Estimates of Funding for Various Research, Condition, and Disease Categories) http://report.nih.gov/rcdc/categories/Default.aspx. Note that I calculated the 2009 and 2010 NIH $ per capita assuming unchanged population estimates from Dr. Brian Skotko’s 2008 data.

3 Possible Ways to Donate
To donate online, please click on Matthew’s photo below. Any amount would be helpful and appreciated.

Our fundraising page will open in a new window where you can donate online. Donations can be made anonymously, if you choose to do so. Online donations will be accepted until May 21, 2011. (Please be aware that this fundraising site automatically allocates 10% of the donation amount as a tip. Tipping the fundraising site is not necessary. You can select the option not to tip in the drop down menu before confirming your donation.)

If you would rather send a check, make it payable to "Down Syndrome Research and Treatment Foundation" and write "Bill and Ria" on the memo line. Please contact us so that we can send you more details. Check donations are accepted until May 14, 2011 because we have to get them to the DSRTF by May 16, 2011 in order for checks to count toward our total.

Donations are tax-deductible.

If you would rather donate a few minutes of your time, please share this post with friends on facebook, twitter, or on your blog, if you have one.

Thank you very much for your generosity and helping us spread the word! Your support of this great cause means a lot to us, especially to Matthew.

The link to our fundraising page is http://www.crowdrise.com/plus15/fundraiser/billandria.

Grab the button below for your blog.

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Thanks again for your support of this great cause, and thanks for reading!

About plus15

plus15 is an initiative of the Down Syndrome Research and Treatment Foundation (DSRTF), a non-profit organization funding cognition research. When you give to the plus15 campaign, 100% of your money will go directly to funding cognitive research at major research centers around the country, including Johns Hopkins Medical Center, Stanford University, University of San Diego and University of Arizona.

Here is a short video made by the DSRTF:

NACD Free Telephone Seminar on Down Syndrome

The National Association for Child Development is hosting a free telephone seminar on April 27, 2011 at 8pm (CST).

This is Part 2 of a seminar on Down syndrome. Part 1, which was done in March, was very successful and packed with information. It is available as a free podcast on iTunes (search for "NACD" on iTunes).

Topics to be covered include:

- Understanding hearing--why it is such a huge issue with Down Syndrome and how to address the problems
- Speech--how it is affected by hearing, structure, and function
- Looking toward our children's futures:
Self-help skills, chores, behavior, and on becoming responsible
Creating a target
NACD Foundation--creating a different model for our children's future

The Conference Call number is (712) 432-0075. (This is a long distance call. If you do not have long distance services on your phone, Skype is a recommended alternative.)
The Conference Code is 662415.

IMPORTANT TIP:
When entering the telephone seminar, hit *6 to mute your line to avoid sharing background noise with everyone on the call. To ask a question, hit *6 again to unmute. *6 allows you to toggle between mute and un-mute.


We will be listening in on the telephone seminar. Will you?

New Parent Support Volunteer with Down Syndrome Association

When Matthew was born in 2007, the first hour of his birth was a great celebration for us. The news that the doctors suspected he had Down syndrome sent us into shock and the hour of celebration was clouded with disbelief, worry, a loss of control, and sadness. The many days that followed were unfortunately filled with anxiety, uncertainty, loneliness, guilt, and grief on top of sleep deprivation and crazy hormones.

The early days of having Matthew home were physically and emotionally draining. Some days it was hard to talk to other people and smile while some days were manageable.

It was one of Bill's sisters who connected me to their neighbor, who was another mom with a 9-year old (at that time) with Down syndrome. She also happened to be a new parent support volunteer. I vaguely remember being asked if I wanted to talk to her. I think my initial answer in the first few weeks was "not yet."

There were many days when my mind was heavy with thoughts about possible medical issues, more bloodwork and doctor visits needed, independence as an adult, and protecting Matthew from discrimination and ridicule.

Almost a month after Matthew's birth, I received a letter in the mail from that mom. Reading her letter today still made me teary-eyed as I recalled the past. Her letter was congratulatory, very reassuring, comforting, encouraging, and insightful as she shared a little bit about her family and her own emotions when her son was born. She also included a mini photo collage of her son through the years, which I liked to see. (I was recently made aware that during the early weeks, some moms are reluctant to see photos or meet other kids with Down syndrome). At the end of her letter she wrote:

"Matthew will be the sunshine of your life. The challenges which you will face will be matched, or exceeded by, unexpected blessings."

I invited her to our home shortly after. She came with a New Parent packet from the Down Syndrome Association, which was loaded with important information. Like many things affected by fatigue during that time, our first meeting is now a blur. I only remember that it was nice to meet and talk to her. We got along well. I don't remember feeling depressed or crying while she was visiting so I must have been able to pull myself together and manage a conversation and a few smiles. She was a great source of encouragement and knowledge.

After making the connection personally, it was very reassuring to know I wasn't alone. The book "Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives" also helped cement that reassurance. Reading Gifts led me to find blogs of other moms and dads who have kids with Down syndrome. And that led me to start this blog.

But I wanted to do more. I wanted to be a source of support, encouragement, and information via the blog AND in person.

Answering what I perceive as a calling, I trained as a New Parent Support Volunteer with our local Down Syndrome Association this past Saturday. I've been wanting to do this since April last year but Elizabeth was a couple weeks away from being born and having a newborn would make it impossible for me to commit to the responsibilities.

I'm very happy to have this opportunity to pay forward the support that my new parent support person gave me during my most vulnerable time. Thank you so much!! (You know who you are.)

Everybody Loves Reece's Rainbow

Reece's Rainbow is the connection for orphans with Down syndrome all around the world to find forever families.

An American family. Possibly the forever family of a 4-year old boy with Down syndrome from Russia. His name is Kirill. Everything was looking good until the Russian judge ruled against their application. The basis: Kirill was "not socially adaptable due to his medical condition." The judge would not approve the adoption only because Kirill has Down syndrome, saying that "he was better off in an institution than in a home with a family." It is absolutely heartbreaking. Read Kirill's story.

Kirill's story has spread like wildfire. Actress Patricia Heaton (in the tv series Everybody Loves Raymond) is responding to Kirill's story by supporting Reece's Rainbow. Read her Reece's Rainbow note on facebook.
She is donating $1 for every Reece's Rainbow follower on Twitter up to $10K.

Please show your support and help raise funds and awareness for orphans with Down syndrome. Simply follow @ReecesRainbow on Twitter.

World Down Syndrome Day 2011

The International Down Syndrome Coalition for Life (IDSC), which is a non-profit organization educating medical staff and families with a prenatal diagnosis with up-to-date information about Down syndrome, has created a video featuring many amazing people living with Down syndrome. (Matthew and Elizabeth are in this wonderfully made video too!)


March 21 is chosen as World Down Syndrome Day because the date "3/21" represents the triplication of the 21st chromosome. People with Down syndrome have 3 copies of the 21st chromosome instead of 2. It is celebrated by Down syndrome organizations all over the world.

In honor of World Down Syndrome Day, +15 is putting together a collage of photos with the words "One of Them is Me" to send to policymakers and to advocate for increased research funding. Here is the photo we shared.

Non-invasive Test for Down Syndrome by 2013

A cheaper and quicker blood sampling method to test for Down syndrome is reportedly going to be available to pregnant women by 2013. I'm all for non-invasive testing that takes away the risk to the unborn child. But it seems like the risk to an unborn baby with Down syndrome increases - the risk of termination.

The general perspective about Down syndrome is relatively better today than it was 20 or more years ago. Unfortunately, despite the awareness generated over the past several years by organized groups, blogs, families, and self-advocates with Down syndrome, there is still a lot of work to do. Headlines like Down's syndrome test breakthrough 'on the horizon', New screening halves the number of children born with Down syndrome, and Non-invasive screening in early pregnancy reduces Down's births by 50 percent make it alarmingly apparent that society in general has not really changed their minds about Down syndrome.

I reshared a friend's status on my facebook wall yesterday (referring to the article Down's syndrome test breakthrough 'on the horizon'):

"He said...[this] will encourage more couples to take the test and therefore slowly eradicate the disease." The "disease" being Down syndrome. MY KID. Could they be any more obvious? I'm all for early detection if it means bringing babies into this world more safely; we knew ahead and I'm glad for that. But suggesting this as a means of eradicating my child and people like him is just sickening.

It's so sad.

If tested positive, why not encourage more proactive prenatal care and perhaps a form of targeted nutritional intervention (TNI) as the baby develops in utero instead of suggesting or encouraging termination? Is there scientific research about prenatal care for preventing or lessening the chances for heart defects and other common issues in newborns with DS, thus giving them a healthier start in life?

There is no cure for Down syndrome. But many individuals with Down syndrome are leading happy and productive lives. The general consensus among families and friends of people with Down syndrome is that people with DS bring out the best in us and give our lives more meaning. I agree 100%.

What's next? There is no cure for autism, cerebral palsy, and other conditions. If a non-invasive blood test to detect these in utero is developed, would it also be viewed as a means for eradicating fetuses diagnosed with such conditions?

Book Review: Taking Down Syndrome to School

/>This is the first children's book (for ages 5 to 10) I have read that addresses the r-word or "retard." Nick, the main character, goes to a public school where some kids have disabilities but most don't. He explains that it hurts his feelings when other kids call him names such as the r-word. From Nick's perspective, the r-word means slow and when other kids make fun of him using the r-word, it makes Nick feel that they think he's stupid. Nick also says, "I hope if you hear someone use the word "retard," you'll tell them to stop."

Kids will always have questions and wonder about kids who seem "different." I think it's important to address these questions honestly, accurately, simply, and in a way that is relevant to them.

I like the kid-tone of the book addressing why he doesn't speak clearly sometimes, why his tongue stuck out sometimes, how he looks different, how he needs more time to learn, and how Down syndrome is not a sickness and can't be caught like a flu. It is probably wordier than any of the other kid books I've read but real and common scenarios/ issues/ questions are explained clearly and simply. It offers guidance and sets the tone for inclusion and acceptance.

At the end of the book is a mini quiz for kids, 10 tips for teachers, and information on additional resources.

"Taking Down Syndrome to School" was published in 2002 by JayJo Books, LLC and written by Jenna Glatzer, a sibling to a brother with Down syndrome. Her brother's name is Paul Glatzer.

My opinion: A book that is well done! A two-thumbs up for advocacy in school for young kids!

Have you read it? What did you think? Have you read it to a classroom of kids?

Dancer With Down Syndrome

Another highly inspiring story this week is about Nicole Smith. She's more graceful than a swan on the ballroom dance floor and yes, she has Down syndrome. It makes me wonder what Matthew's passion will be.

Excerpts from the article:

Doctors told Diane and Mike Smith that their daughter would probably never walk, talk, read, or dance.

Nicole was six-years-old when her parents noticed her love for music, so they enrolled her in a dance class.

“I realized how talented she was right from the beginning and we got through so much material in her first few lessons that we started to work on shows almost right away,” says her instructor and partner Pabaka.

“It takes her twice as long and twice the effort to be able to do what she does and she pushes through all of that,” says Diane.

Read the full article and watch the video to be inspired.

Kindermusik Teacher with Down Syndrome

The latest inspiring news I have seen today is about a teacher in Columbia, South Carolina. Her name is Bryann Burgerss. She is 22 years old and has Down syndrome. If she were in our area, I want Matthew and Elizabeth to be in her Kindermusik class!

Excerpts from the article:

Something that many would see as a difficulty, she turned into an inspiration.

Bryann brings something invaluable to her students.

"I always tried hard, and I always did my best. No matter what happens, I just keep on going and dust myself off."

Bryann is proof that with hard work, and a positive attitude, you can do anything.

Read the full article and watch the short video and be inspired.

Accelerating Scientific Research For Down Syndrome

As a mom of two, I am heavily invested in my children's futures. I want both of them to be independent, productive contributors to society.

As a mom of a child with Down syndrome, I want just as many opportunities available to Matthew in his future as there would naturally be for Elizabeth. I want Matthew to be accepted and respected. And I want Matthew to have greater options in life than he might have otherwise.

I am always interested in new scientific research about Down syndrome. Three groups that actively Down syndrome medical and cognitive research are:
- Down Syndrome Research and Treatment Foundation (DSRTF)
- Global Down Syndrome Foundation
- Research Down Syndrome

The DSRTF has an ongoing campaign called plus15.

For every dollar donated to plus15 before midnight tonight, a donor will match 3 to 1. The plus15 campaign funds research at major research centers, including Johns Hopkins Medical Center, Stanford University, University of San Diego, and University of Arizona, into how to improve the memory, learning, and speech of people with Down syndrome by 15 percent.

Down Syndrome Achieves is another organization that is spearheading the drive for more Down syndrome research work and legislative action. Lisa at Living in the Light blogged about Down Syndrome Achieves in her entry "A New Era in Advocacy for Down Syndrome".

I listened to their eye-opening and very interesting web conference this evening. It was shocking (and very sad) to see the disparity in government funding for Down syndrome and other diagnoses. Basically, more funding for Down syndrome means a possible acceleration of scientific research and treatments to improve learning, cognition and communication. I'll share more details about it in a separate blog entry. Another web conference is scheduled on February 17, 2011.

It all sounds promising. I am hopeful. If the research translates to good options for improving learning, cognition, and communication, which in turn can lead to better opportunities and independence, then I am for it. Are you?

Book Review: Kellie's Book

If I had a coffee table in the living room, this would be one of the books on it. But until the kids are grown up, books like this will sit high on a shelf to save them from being torn or used as a coloring book.

The book is colorful and well done. Kellie's writing style is simple yet profoundly honest in portraying how family, love, passions and interests, a sense of accomplishment, and acceptance are truly important in life, at least for Kellie Greenwald and for many people, including myself. All the drawings are her own. Kellie was born in 1978. She also wrote about how hard she worked on this book. I believe her! From what I've learned from my sister-in-law's experience, getting published isn't a leisurely stroll in the park. There are many details to consider: layout, storyline, artwork, and so on.

This is the third book that I have found that is authored by an individual with Down syndrome. The other two are "I Just Am" by Tom Lambke and Bryan Lambke and "Count Us In: Growing Up With Down Syndrome" by Jason Kingsley and Mitchell Levitz, which I am still currently reading.

A keepsake. A statement. A wonderful effort for advocating abilities of people with Down syndrome. The book also includes several photos of Kellie with family and friends as well as a mini biography about Kellie.

Related posts:
Book Review: I Just Am

Book Review: Early Communication Skills for Children with Down Syndrome

I once attended an hour-long Speech and Language seminar hosted by three speech-language pathologists at a Down syndrome conference. Most of the information provided was from "Early Communication Skills for Children with Down Syndrome."

I've had this information-packed book since Matthew was a baby, referring to it for guidance and information about speech and language development for children with Down syndrome. The ssection on hearing and ear fluid in Chapter 2 reaffirmed a friend's advice to be meticulous and aggressive with treating any chronic ear fluid Matthew might develop. Hence, Matthew got his 1st set of ear tubes when he was 8 months old after a few undetected ear infections and discovery of persistent fluid in his middle ears.

The book offers practical suggestions and activities that can be easily integrated into our day, once I make a habit of it. It provides important tips and ideas on communicating, teaching vocabulary, supporting receptive and expressive language and enhancing a child's communication skills. For example, using real objects and real situations is important for learning concepts and building vocabulary as abstract thought tends to be difficult for children with Down syndrome.

Chapters 1 to 6 are:
- "Language, Speech, and Communication"
- "Speech and Language Characteristics of Children with Down Syndrome"
- "Busy Baby - Busy Parents"
- "Before the First Word - Precursors to Language"
- "The One-Word Stage"
- "The Two- and Three-Word Stages"

I find myself referring to this book more now that Matthew is communicating verbally with one-word or two-word phrases. I like the book suggestions to help stimulate language.

Communication is discussed in more speech-language pathologist speak/ terminology in chapters 7 through 13, including:
- "The Nuts and Bolts of Language Comprehension"
- "Speech and Intelligibility Problems"
- "Articulation and Phonology: Learning the Sounds of the Language"
- "Pragmatics: Communication in Action"
- "Communicating without Speech"
- "Understanding Speech and Language Evaluation"
- "Understanding Speech and Language Treatment"

So in a way, the book becomes a specialized dictionary for understanding unfamiliar professional terminology.

In chapter 14, "Literacy and Language," interesting points are made about teaching reading to children with Down syndrome before they turn 3 and how this would help develop speech and language. A few resources suggested were Love and Learning, the book Teaching Reading to Children with Down Syndrome, and Sue Buckley's approach to teaching reading, which to me seems similar to the method discussed in Teaching Reading to Children with Down Syndrome. Excerpts include:

"...the brain can go straight from print to meaning without changing the visual image of the word to its spoken form first and then accessing the meaning" (Buckley, 1996). In other words, before a child with Down syndrome even learns to speak, he may be able to look at a word such as 'dog' and see a picture of a dog in his mind without saying or even being able to pronounce the word in his head."

In a 1995 study by Sue Buckley on skills of two groups of children with Down Syndrome, results demonstrated that the children who were taught to read had more advanced language and memory skills than the nonreaders. Furthermore, she has found that children with Down syndrome who begin to read early are more advanced in speech, language and educational progress by age ten to eleven.

Overall, a very good book to have. It is an invaluable resource especially if speech and language are top priorities. And they are for Matthew. We want him to be intelligible to unfamiliar people and have a good foundation for speech and language development in order for him to communicate well with others. With this book, I feel armed with the information and guidance I need to help Matthew maximize his communication potential.

Have you read it? What do you think?

On Tongue Protrusion

Matthew and I went to the zoo last month. We were looking at the elephant when I heard a young boy ask his mother, "Why does he keep his mouth open?" I looked over and he was looking at Matthew. It was an innocent question. Matthew's mouth was open. The boy was probably around 8 years old. I didn't hear his mother answer his question and saw her trying to redirect his attention to the elephant. I just smiled at them but didn't say anything else.

I've heard stories of encounters where strangers would actually rudely tell a toddler (or even a baby) to keep his/ her tongue in, as if the child was doing it on purpose. Our encounter wasn't like that. Otherwise, my blood would've been boiling and I would have definitely said something.



Looking back, maybe I should have casually said, "Oh, he doesn't keep his mouth open all the time" or "He's just so amazed by the elephant." It might have been better than saying nothing. But at that time I didn't think there was anything I could say that wouldn't lead into explaining low muscle tone, jaw stability, large tonsils and Down syndrome to strangers at the zoo.

It has been commonly thought that tongue protrusion was due to an enlarged tongue. There are many articles online that still cite that. An online article titled "Tongue Protrusion" by Karen Henderson, who is a Senior Speech & Language Therapist at Cheeverston House, Tempelogue, Dublin, has an extensive list of factors that may contribute to tongue protrusion. It also acknowledges that every individual with Down syndrome is affected by a different combination of these factors. No one is the same. She also suggests several simple activities to increase tone and awareness around the mouth.



Encouraging Tongue Retraction
Several people, including Matthew's Early Intervention therapists, have observed and commented that Matthew is able to keep his tongue in and mouth closed most of the time. Yet in my mind, having his mouth open for perhaps 30% to 40% of the time each day is still an indicator that he needs to increase his overall tone, jaw stability and awareness.

I personally do not believe that Matthew has enlarged tongue. I think his large tonsils are also a contributing factor to his tongue protrusion. I don't know this for a fact but this is what I speculate.


I did (and do) many things to encourage tongue retraction including:
- breastfeeding when Matthew was a baby as much as I could. I nursed him (but not exclusively) for about 8 or 9 months until my body decided it couldn't keep up anymore. He also drank milk from a Dr. Brown's bottle.
- facial massages to stimulate the nerves in the face.
- tapping my finger on his tongue when it was out to make him aware of it. He was less than a year old. It didn't work all the time though.
- asking him "Where's your tongue?" to encourage him to point to it and in effect, pull it back in his mouth. This was when he knew what "tongue" was.
- using a z-vibe and Jiggler to stimulate the mouth muscles.
- using straw cups whenever possible to encourage lip closure, which helps with oral-motor tone.
- prompting him to say "mmmm" when we were working on the m sound in speech therapy.
- increasing his overall tone with various fine motor and gross motor activities.
- getting him to smile or laugh a lot. He almost always smiles with his tongue in plus it's just nice to see him smile or hear him laugh.

There are so many suggested activities to encourage tongue retraction. An occupational therapist and speech therapist will have lots of ideas. There are even programs like the "Horn Hierarchy" and "Straw Hierarchy" available at Talktools if one is willing to spend the money.

It's an ongoing effort. I imagine it will get easier as he gets older and more aware of whether his mouth is open or not and if his tongue is in or out.

Related post:
TalkTools Horn Kit
TalkTools Straw Hierarchy Kit

Book Review: I Have Down Syndrome, What Does That Mean?

There's a new children's book on Down syndrome on the block and it's written by Sandi Graham-McWade, inspired by her young son, Hunter. "I have Down syndrome, what does that mean?" is asked all throughout the book. Illustrations, like the one on the cover, are found on every page that has simple one-liner answers for kids with Down syndrome who might ask the question.

Matthew is too young for this book right now. We'll probably read it together when he is in grade school or when he may ask what it means to have Down syndrome. It's a nice book to have in our libray alongside the other children's books we have about Down syndrome.

Have you read it? What do you think?