The Media and Down syndrome

I wrote this piece on Baby Center to explain some of the sorts of media pregnant moms can expect to encounter as they go through their journey with their child with Down syndrome. It may be something I want to point to again, so I thought I would use my neglected blog to store it and share it.
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The media loves stories about people with Down syndrome, for whatever reason. I have a news feed on the subject that I have received every day for the last almost 8 years.

My observation is that the stories fall into a few broad categories. This is not meant to be an exhaustive list - just the biggies. Here is a snapshot of the type of stories you may see:

1. Stories that claim to be about people or children with Down syndrome but are really about their parents struggles with diagnosis. Those follow exactly the same arc every time - these parents had a baby with Down syndrome. They were sad. Their baby was awesome. Now the parents are doing X, Y or Z to make the world a better place for their baby with Down syndrome. The variation is that the baby is doing XY or Z (modeling, using a new therapy or program that is being brought into the community.) The news likes the sensational part of the sadness we have and that the extra chromosome makes us sad at first.

2. Homecoming prom king/queen. There are seasons for these stories. The best ones tell about the life and accomplishments and friendships the person with Down syndrome has had and show that person as a human. The worst have an "awe, shucks, those kind typical kids took pity on the poor person with Down syndrome." (My personal theory is that the votes for kids with Ds many times aren't as much for that person as they are against the injustices of the social class system in all many high schools. ) You can tell from the interviews the schools where the person with Ds is really known and loved by his or her classmates vs. the ones where they are doing it because they saw other schools do it and high schoolers are lemmings. The news loves the unexpected drama of this voting, but I suspect since we are seeing so many of these stories so many places eventually it won't be news.

3. The "those kind typical kids were good sports and let the kid with Down syndrome catch a football/make a basket/be the top of the pyramid for one game." Lots of people hate those, but I read it from the perspective of a parent of an older child with Down syndrome, and adjusted my attitude a bit about the act of doing it, but I don't always love the way they are reported by the news- (Lespring's response on this thread is the one that changed my thinking on it -http://www.downsyn.com/phpbb2/viewtopic.php?t=42120&highlight=football)

4. Stories that involve the law. These may be person wandered off, person was abused by someone, person got mistreated by law enforcement. Thank goodness, these stories are by far the minority, but they do happen. At first they terrified me (every story about Down syndrome I tended to personalize at first, but then I looked at the 20 other stories on the same page and realized there were bad things happening to typical women all the time and I never had a personal, irrational fear that those things would happen to my other daughters.)

5. Adults. I tend to love reading stories about adults with Down syndrome, what they do, and how and why they've been able to do it. Mostly they make me excited about Violette's future. I read a lot, and always have. I've become much more aware of many issues that I wasn't when I first had Violette - especially how some people with disabilities feel about some types of stories and presentations (google "inspiration porn"). On the other hand, I know several people with Down syndrome are happy to have Down syndrome and happy to share what they accomplish and what they can do with the world (just like many other people do.) It would be hard to be Madeline Stuart, or the people who love her and to see criticisms of the way her story is being told or the choice of her photographs being shown. Taking Down syndrome out of the equation with this story, I can't see how it would be told much differently than it has with other models (unless I've missed some more exploitative stories about her - I tend to read the first news outlet's story and skip the rest of them.) I do know, that if you are already critical of certain types of stories, you'll probably find examples of the same types of things with a Down syndrome focus. (I love weight loss stories, personally, and find inspiration in about everyone who loses weight through exercise and food choices if they have Down syndrome or not.)

6. Medical stuff. Lots going on in this area from prenatal tests to cognition therapies to studies on everything.

7. Fundraisers of the "gofund" me variety. They seem to be newsworthy, for whatever reason. I don't just love them and I'm HIGHLY skeptical of many of them. Some are legit, but some are just scammers. We've seen seemly good stories go awry when it comes to fundraising sites and Down syndrome. When it doubt research and ask questions. And remember, just because someone is asking for heaps of $ as it relates to Down syndrome, it doesn't mean that you'll be strapped because you have a child with Ds. The media seems to like that stuff, though.

I think Down syndrome, and disability in general, have a love/hate relationship with the media. I know I do when I read stories - some are tremendous and do wonderful things to change perceptions and open eyes. Through the years media has been wonderful when you think about passage of landmark bills that changed the lived of people with disabilities - ADA, and IDEA and even the ABLE Act, while at the same time there is coverage that reinforces stereotypes or exploits or subtly (and occasionally overtly) is prejudice.

In the end, we all take away unique things from what we see and read based on our own experiences and ideas. To me, reading everything about Down syndrome - good/bad/medical has been eye opening to me. There are stories I find tiresome for sure. Media exists to get people to read it - stories about average people with or without Down syndrome aren't newsworthy, so we get a very skewed look at the world when we look at it. We encourage people to find local support as soon as they are ready for a reason - the chance to meet with real families is invaluable. The most negative stories, the most optimistic stories? Neither are likely to be what your experience will be. You will, like many of us, adapt and grow as people and parents to whoever and whatever your child is exactly as they are.

Down syndrome wedding videos

For a while after Violette was born, I focused on the things that she and we were going to miss, and it made me sad.  As she has grown up, I've become much less concerned about all of that - I realize that she will have her own life, and it may be different than how mine looks, but it can still be very very good and make her very happy.

One of those early things I thought she might never experience was love and marriage.  Almost everything I've ever found that I had originally thought would "never" happen (both things I cared about, like weddings and things I don't so much, like getting a tattoo) I've found examples of in the real world.  I've been collecting a few videos over the years of couples where one or both individuals have Down syndrome.   There are many different types of adult relationships where Down syndrome is concerned, and like many things with Down syndrome, there is some "extra" involved for the individuals and their parents.  Things like retaining benefits, living supports, and more can complicate relationships.  Adult relationships are now a part of the National Down Syndrome Congress Conference program.  But in the end, for couples in love with a supportive family, they figure out a way.  If you haven't watched Monica and David the movie, it is really worth looking at.

I hope you enjoy these.  Feel free to post any others that you read about or see.

http://www.youtube.com/watch?v=xKMowXddAG0&feature=youtu.be

http://lydiatom.ourwedding.com/

http://fox2now.com/2013/04/14/clayton-wedding-day-is-a-dream-come-true/

http://www.monicaanddavid.com/

http://vimeo.com/4066173

https://www.youtube.com/watch?feature=player_embedded&v=LHCUQxXHnvU#at=192

http://www.stuff.co.nz/the-press/news/city-centre/9383432/Wedding-christens-Cathedral

http://pinkshoephoto.com/category/the-big-day/

https://www.rocknrollbride.com/2016/07/downs-syndrome-wedding-with-singing-dancing-a-unicorn-throne/

A Day in the Life

In honor of World Down Syndrome Day, I'm participating in a Blog Hop with a bunch of my friends from Down Syndrome Blogs!  Here is a look at a very typical and very boring normal day in the life of Violette.

7:15 a.m.

The bathroom door opens a crack, then closes again. Then opens. She comes barreling in. Think a gentler Kramer from Seinfeld.

“'mornin' Mama!”  

“Good Morning Puddy!”

“Howd’ya sleep Mama?”

“Good, Pud-pud. How did you sleep?”

“Awesome.  Whatcha doin’, mama?”

Me, putting on my makeup.

“Tap Dancing.” 

“Mommy, you not tap dancing. You puttin’ on your make up!”

“Where’s your head gear, Puddy?”

“I take it off myself, Mama.”

And so begins many week days at our house.  I scurry around to get dressed. She comes downstairs with me. Her big big sister is at the table.  I get my breakfast, get backpacks and get her juice or milk. She gets her iPad, or draws or turns on the TV.  I kiss her goodbye, tell her to have a great day, and she tells me to have a gweat day too. We leave her by herself downstairs. Her daddy is upstairs, just waking up and her middle sister is sleeping.   Some mornings, now that she is getting bigger she’s started getting her own clothes out and getting dressed.  Our sitter gets to our house around 8:00 and gets breakfast made and everyone ready to go.  I never imagined she’d be as capable of not getting into trouble in the morning or amusing herself without constant 24/7 supervision when I found out we had 1 in 16 odds she’d have Down syndrome, but in this aspect she is very much like her sisters were, and very reliable.

They go to the bus. She is in 1rst grade and rides the bus with her sister.  She goes to school. She generally behaves pretty well, though we've received occasional notes from the school that she doesn't want to come in from recess.  If that happens too often, she doesn't get her iPad.  Her principal reports that we are lucky she doesn't come home with holes in her because she is so sweet he and the secretary have to restrain themselves from eating her up all day.  I know what he means – I have to restrain myself too.  She learns sight words at school, and counting. And the other stuff kids learn. Yesterday she told me they had a fire safety drill.  When we are at the school, it is obvious everyone knows her, everyone likes her and she has fun.

She gets home and does her homework with her sister on the stools at the counter. She usually wants a snack of chips and cheese (basically nachos.)  When she’s done, she either watches Frozen (she knows all the words and acts out scenes with her sister) or Toy Story (she plays with her Toy Story guys all the time, again, acting out scenes with them) or if the weather is nice she goes outside with her sister and plays.  

They love to play on the swing set, or bounce on the trampoline, or color on the driveway with chalk or ride their bikes or scooters.  She occasionally has an accident on the trampoline from all the bouncing – low muscle tone combined with a lack of desire to stop playing is the cause of that, we think, though she has been potty trained day and night since right before she turned 4.  Sometimes too she and Lilianne will be playing Minecraft on the iPad.  Apparently they both have “worlds” that they can visit.  It is funny to hear Violette yelling “I by the tree by the ice near the sheep Lilianne! You find me?” She often comes to me with requests to buy her “one tiny little new App.” She scours the app store for new apps she might like, eagerly pointing out if they are free to me so I’ll get them for her. Other times she likes to play in her room and draw.  The other day she drew our Vitamix. Hilarious.  

When she sees me she comes running “Mommy Mommy, you home, you home!” I’ll ask her how her day was, and most days she tells me “All stars.” She has a daily book that talks about her behavior as she moves from activity to activity.  A star means she did well. A flat line means she didn't. This year has been a mostly all-star year for her. Kindergarten was rougher – learning the ropes took a while.  We worked with the school and worked through it. The consequences of poor behavior at school were getting the iPad taken away from her. That did it.

We try to eat dinner as a family, and she is right there in the discussions. She and Lilianne and Vivianne squabble freely.  Having Down syndrome is no excuse for any bad sisterly behavior. “I DON’T LIKE YOU VIVIANNE” “WELL I DON’T LIKE YOU EITHER, VIOLETTE” are phrases frequently exchanged at our house.  

But she is very polite – she almost always asks before she does something “Please mama, can I have some orange juice” or “’scuse me, Madre, you get Toy Story guys for me?”

Lately we have had many conversations about teeth – her big big sister got her braces off, and she and her middle sister have devices in their mouths.  Violette also wears a headgear and palate expander to make her mouth bigger.  Her big news this week was that she lost her first tooth. She knew the whole deal about the tooth fairy and keeping the tooth. Too funny.  During a normal week we are either driving her sister to choir, her other sister to sports practice or she is going to Special Olympics.  Some days she has speech therapy and Occupational Therapy, which we do every other week.  Her weekends are similar, but include smoothies, church, her cracking eggs for breakfast, swim lessons and going to a lot of sporting events with her sisters.

She never likes it much if her sisters get to do something she doesn't. This week it was her 9 year old sister getting to go to see the musical Wicked.  She wanted to know where we were going and why she didn't go. I told her it was something that only older girls were allowed to do, and that she wasn't old enough. She immediately replied “Like the Hunger Games?”  Yes, she totally got the concept and remembered that months earlier she and Lilianne were too little to watch the Hunger Games movie.  She gets the big concepts.

8:30 p.m.

Our bedtime routine is usually pretty funny. She is stubborn about not wanting to come up for bed.  Eventually we coax her up. She goes potty, takes her medicine, brushes her teeth and then gets her jammies on and we do sight words or read a book or play.  Lately I've been teasing her that Mr. Weesie is in the mirror. She goes nuts about Mr. Weesie. “There is no Weesie, Mommy! That’s ME! VIOLETTE!”  I think it is funnier than she does, talking about Mr. Weesie. 

Another part of our ritual is putting on her head gear or cranking her palate expander. Last night I told her it was a "crankasaurus" night and she said "YAY! YAY! YAY" When I was out of town her father had to do it.   She got things set up for him. 

When she is ready for bed, she climbs in with no fuss. I turn on her "nigh-nigh" music (Sounds like Fun) – the same music she has listened to every single night of her life.  I usually climb in bed with her.  She has to have her Bunny in her hands, but she also has to be sure that Big Dumbo, tiny Dumbo, Baby Addie and several other bunnies are in her bed. Anything that doesn’t belong she throws out unceremoniously.  I ask her about her day, her friends, her teachers. She doesn't usually offer much, so I have to ask her If Mrs. So and So is very mean?  She laughs and says “no she’s nice, Mommy.” What about that terrible mean old Mrs. Whosie Whatsie? “No, Mama, she nice too!”  She likes to snuggle with me, and say “ugga mugga mama” and rub noses.  Lately I've had to kiss her chubby neck a lot because the headgear gets in the way.  I usually have to explain to her that next is Lilianne’s turn for good night snuggles.  She’s ok with that, and rolls over to snuggle with her bunny and fall asleep. 

"Night Violette, I love you!"

"Night Mommy, I love you too!"

Would you want to take away being a lefty, Vivianne?

There is so much in the news right now about new Ds research and turning off the extra chromosome. I have so many mixed feelings about this news - some high hopes and some huge reservations.  I don't have any linear thoughts, so instead decided to share the drips and drabs of things I've been thinking as I process the news.

What happens in 10 years? I once read a wonderful article in Oprah magazine that has really become a cornerstone in how I look at the world when I am making decisions.  It is the Suzy Welch's 10 10 10 rule.  I'm thinking quite a bit about where this science is going, and how it might impact me and more importantly Violette in 10 minutes, 10 months and 10 years. 

The haves and the have nots.  Will treatments be expensive?  Will we see individuals who can't afford to participate? Will we see individuals forced (or strongly encouraged) to participate if they are on government assistance.  Will that assistance disappear?  What happens if some parents and individuals with Ds choose treatments, while others don't?  Will those individuals who don't get treatment face additional social stigma? Even with those treatments, will our children face prejudice? But will that prejudice cut them more deeply with the added cognitive reasoning they might have? 

Cool thought. Wouldn't it be cool if someday, scientists could take stem cells from Violette, turn off the extra chromosome and print a new heart for her without the effects of the 3rd copy of the 21st Chromosome on a 3D printer?  You know, a heart without a cleft in its mitral valve? Go manufacturing! Go geneticists! What an amazing breakthrough that could be.  Also, will the technology allow us to silence the chromosome in the cord blood and use it for a bone marrow transplant to treat the child's leukemia?   I can think of a myriad of other amazing things that could enhance the lives of individuals with Ds based on this research.  

Would you take away your genetic variance? I've been thinking a lot about my bald friends, my overweight self and friends, my left handed child and my gay friends (that list can go on and on, of course, but those folks have been most on my mind.)  Would they take their variance away with a magic wand (or magic pill?)  Would they take their children's variances away?  Vivianne has said NO WAY would she not want to be a lefty, in spite of the fact that she complains about being a left handed girl in a right handed world. How is Down syndrome the same and how is it different? I've been contemplating that.

Impact.  If I increase my child's ability to do math, improve her memory and chemically alter her capabilities for "higher reasoning" how will that change impact her happiness? Dr. Skotko's research shows that the vast majority of people with Ds are quite happy - and from my personal acquaintances with adult people with Ds, I believe that to be the case. So is the increase in what conventional wisdom says is valuable in terms of intellect a fair trade for a possible diminished life happiness?

Self Determination.  A lot has been in the news about Jenny Hatch and her right to have input on where she lives.  Will we respect our children - including our adult children if we are their guardians - and view it as their right to determine if they want to participate in research and/or a "cure?" Or will we impose our perspectives on them in hopes of something "better" from our purview?  

Having my cake and eating it too. Would it be possible to turn off the parts of the 21st chromosome that can cause challenges in memory, reading and math, hearing loss, and heart conditions while keeping the beautiful Brushfield spots, the creamy soft skin, the candor, and the spunk.

Side effects. What side effects might silencing the chromosome cause psychologically, physically, emotionally, etc.? 

Secondary conditions.  I've heard that the rate of Autism is higher in individuals with Ds, and there isn't a clear cut reason why.  Would turning off the extra chromosome take that away? Would they want to take it away, because many people with autism appreciate their unique identity too?

One syndrome, or many? I keep wondering if geneticists will eventually determine that what we consider one syndrome right now should really be considered a multitude of syndromes with many different variances.  At one point, breast cancer was thought of as one solitary thing, but as the tumors were looked at and analyzed it turned out there were many different types of cancers and those responded differently to different treatments. When I look at the wide range of impact the extra chromosome has on individuals in terms of health, speech, and cognition, it seems like there are bits and pieces that express (or don't express) that might benefit from research to turn off and target the parts that cause difficulty.

She'd still always have Down syndrome.  No matter what advances come from the petri dish, Violette will inevitably still be a person with Down syndrome. Silencing isn't the same as erasing. 

Start solving the mysteries!  I am probably equally excited and apprehensive about the big breakthrough.  In terms of day to day life, I'm also excited  about a project that Lito Rimerez has been working on in Columbus.  He has been quietly working behind the scenes assembling a team of Midwest hospitals and their experts on Ds to lay the groundwork for a Down syndrome Biobank.  You can read more about the work of Ds Achieves and their One21 campaign here.

Down Syndrome Pregnancy: Help Throw a Lifeline

"Bad news.  You have 1 in 16 odds for Down syndrome. Only way to know for sure is amniocentesis.  You can call to schedule."

With those words, spoken by my perinatologist when I was 13 weeks pregnant, I found out that my life might change - what I considered at the time - dramatically.  If my pregnancy took place today, I most certainly would have taken a non-invasive prenatal screen blood test (technology that was not on the market 6 years ago), and I would have found out with a great deal of certainty, that Violette, my much loved and wanted 3rd daughter, had Down syndrome.

I know how scared and alone I felt with the higher risk.  I kept the news of my increased odds mostly to myself, with very few exceptions.  I think four other human beings knew (well, and The Best Mom's Ever - my friends from my October 1999 birth board as documented here) during my whole pregnancy, other than my OB.

When Violette was born, I was bowled over with grief (even with the time to prepare.)  I felt woefully inadequate to raise this unicorn in a field of horses - especially as an old grey mare.  My lifeline came in the form of other mothers with children with Down syndrome - they were the ones who knew just how to pull me back into the world of the living.  Nancy Iannone, blogs, like Big Blueberry Eyes and The Bates Motel that spoke about children just a bit older than Violette, and books like Gifts all pulled me out of my stupor and showed me what a meaningful and good life I could have.

In the days after Violette was born, I remember in my massive, crazy research I happened upon the Lettercase booklet.  I remember wishing that I had seen these materials when I was pregnant, and marveling at the pictures, and carefully chosen words.   The information in the booklet was the best I found.  I found comfort in looking at the booklet and reading those words in the weeks following Violette's birth.  No other organization at that time or since then had anything available that was even close to sharing the vision of hope mixed with realism that I had for my life with a child with Down syndrome that I found in that booklet (medical doctors and geneticists apparently agree with me - the booklets are often cited in research papers as the gold standard for materials for pregnant women who need to understand what a Down syndrome diagnosis means.)


Amazing also to me is that almost 6 years to the day after I became a mother of a child with Down syndrome, I can share a way to insure that other women, upon hearing that they are (or may be) having a child with Down syndrome get that booklet at no charge. 

Sevenly, sellers of cause and charity t-shirts and products,  is donating a portion of their proceeds from sales this week to Lettercase.  The products on the site are cool, affordable and support a cause that is near and dear to my heart.  I believe that accurate, up-to-date information should be given to every woman who learns they are having a child with Down syndrome.  Judgment words like "Bad News" don't belong in the discussion.  If you purchase a product from Sevenly, you help throw a lifeline to scared moms. 

Click here to view all of the cool products that they offer.  Thank you!

P.S.  Probably going to be a flurry of blog posts from me. I want to write about DS Achieves and the great work they are doing, and have to update on Wednesday about Violette turing SIX!!!  May even start posting some of the many draft blog posts I have sitting out in Blogger. 

Businesses Owned By People with Down Syndrome

Here is a list business owners who have an extra chromosome!  I add new ones as I learn about them!

Please comment with any other ones that you know of!

Michael Johnson is a very accomplished artist who has DS. You can order prints, cards, and even original paintings at very reasonable prices from his website. http://users.psln.com/sharing/Michael/mainMichael.html

Dlyan has a store on his web site
http://www.oly-wa.us/dkarts/

Simply Adorable Blankets 
http://www.simplyadorableblankets.org/ourblankets.html

Creekside Cookies and more is the other company http://www.creeksidecookiesandmore.org/

Waggies by Maggie
http://www.waggies.org/index.php?option=com_content&view=frontpage&Itemid=1

Group Hug Apparel
http://www.grouphugapparel.com/

Poppin' Joe's Kettle Korn
http://www.poppinjoes.com/about_us

Artist Michael Jurogue Johnson
http://users.psln.com/sharing/Michael/mainMichael.html

Author Kellie Greenwald
http://www.amazon.com/Kellies-Book-Possible-Kellie-Greenwald/dp/1877810428

Author Connor Gifford
http://www.amazon.com/America-According-Connor-Gifford/dp/0981719503/ref=sr_1_1?ie=UTF8&qid=1260327480&sr=1-1-fkmr1

Artist Cinnamon Edgar
http://cinnamonsfloridakeysart.com/

Eric and Megan's card business
http://www.downrightspecial.com/

Artist Dylan Kuehl
http://www.oly-wa.us/dkarts/

Glass Artist - KK
http://kkglassart.com/index.html

Artist Lupita
http://www.lupitacano.com/

Postcards by Tom Eisenger
http://www.inspires2aspire.com/

Sorting, stuffing, childcare and shredding
http://www.ajspecialservices.com/home.aspx

Artist with a variety of merchandise
http://www.bernadetteresha.com/

Brandon shoots and sells photographs 
http://bblovephotos.com/1.html

Lindsey has her own jewelry business called: Lindseymade Originalswww.lindseymadeoriginals.com 

Coffee for sale
http://furnacehillscoffee.com/our-story/

Another from a great self advocate we heard in Orlando! 
http://timsplaceabq.com/ 

Rebecca is presently scanning all of my old videos!
Find her on Facebook at PSB Cubed-Photo Scanning Business by Becca.

Lisa Signs with musical artists!
http://lisasmithsigns.com/ 


Allie Art - Beautiful Artwork by Allie Guard
www.allieartdesigns.com 

Pottery
http://christianroyalpottery.com/

Author Megan Abner
http://www.amazon.com/Syndrome-Its-all-about-attitude/dp/0989123502/ref=sr_1_1?s=books&ie=UTF8&qid=1369582471&sr=1-1&keywords=down+syndrome+up+syndrome

Artist Katie 
http://www.misskatieskreations.com/

Clothing for women with Down syndrome by Ashley By Design:
http://www.ashleybydesign.com/

Imperfect Creations
http://imperfectcreations.weebly.com/

Anna's Card Kits - Greeting Cards

https://www.etsy.com/shop/annacardkits

Emma Lynam Shredding!

http://www.huffingtonpost.com/entry/master-shredder_5602c2a0e4b00310edf962fd?ha6y9zfr&utm_hp_ref=good-news

Meg has a business with Unique hand crafted products.

http://megology.com/

Gracie sells the healthiest dog treats you can buy. Made with one ingredient, freeze dried USDA inspected meat and nothing else. No additives ever. Your dog wants to become a G-Dog and Gracie is ready to pack up your order.

https://graciesdoggiedelights.com/

Amazing all of these talented people!

She's 5

Violette turned 5 in June, and since I didn't post anything on her birthday, I thought I'd use a post that I shared over on the Pregnancy Board. I have so many blog posts in my head that want to get out...time just makes it hard sometimes. But anyway, here are some essential facts about Violette:

When she gets out of bed in the morning, she grabs her own glasses, puts them on and comes into my room and says "Hi Mommy! How'd you sleep?"

When we ask her how things are, she'll usually say "Very Awesome", "Fantastic" or great.

She told my father that he was a "loser" tonight, including the L on her forehead.

She said "Look mommy, the 'Lympics" tonight when we were at Carrabas and she saw them on the TV.

She is usually the only one in my family who says "Bless you" when I sneeze.

She is riding the regular school bus to Kindergarten this fall, and will be in a class of "typical" kids.

She is very helpful, and if I need her to run and get something for me from another room, she is quick and efficient.

She told me her Sprite wasn't right at dinner - it was missing the sweet stuff, and she let me know it was wrong.

She loves SpongeBob, Team Umizoomi and The Muppets.  She can recite almost the entire SpongeBob movie, and knows most of the dance moves from The Muppets.

She doesn't use sign language anymore (it can be helpful to teach signing to kids with Ds early to help bridge the communication delays), and really hasn't since she was about 3, but she remembers every single sign she learned and can show you in a second if you ask her.

Violette chastised me at dinner the other night for not singing along to the Adele song "Rumor Has It." (Honey, not only does mommy not know the words, she's never heard the song!)

She is potty trained.

She loves to play in her room with her Loving Family Doll house and her Brave tower - she really likes Mereda.

She loves her sisters, and they love her, but they are true siblings and squabble, tease and support each other. 

She goes everywhere with us, all the time.

I could go on and on, but that is probably enough...here's is a little picture of me with my sweetie pie...

Blogs by and about teens and adults with Down syndrome

So life has been keeping me busy - too busy to blog! But I did do a guest blog post on A Perfect Lily - check it out if you have time and let me know what you think about it.

I also have had the thought in the back of my mind that I should put together a list of blogs by and about teens and adults with Down syndrome.  So, I've finally started! I'd love to hear from any friends or bloggers with other good blogs to add to the list!

http://aprilanecdotes.wordpress.com/

http://benandrebekah.blogspot.com/2011/11/today-im-proud-ofprincess-sarah.html

http://www.gardenofeagan.blogspot.com/

http://sarahely8989.blogspot.com/

http://joycespage.downsyndrome.com/

http://www.thegirlwiththefreckles.com/

http://downbloggers.blogspot.com/

http://beneaththewings.blogspot.com/

http://adventureswithbeth.blogspot.com/

http://downsyndrometeenager.blogspot.com/

http://dsbutterfly.blogspot.com/

http://speciallydesignedblog.blogspot.com/

http://debsrollercoastercalledlife.blogspot.com/

http://www.theextraordinarygirl.com/2013/05/friends-from-afar.html

http://www.downrightvaluable.com/

(And if you can't get enough of reading stories about older individuals with Down syndrome, check out this post and this one. )

Transitions from one activity to another

I asked some of my Down syndrome posse on Facebook for some ideas with Violette.  In about an hour I had all of these!  I know this is a pretty common issue for kids with Ds, so I thought I'd post this for future reference!  I have highlighted the ones I thought would work best for Violette, and I've removed the names of the kids and posted Miss or Mr. next to their names...

Question:

Any ideas about helping Violette do better with the transition from the playground to lining up? Apparently she is displaying some stubborn behaviors when her teacher asks her do come and do one on one activities (that are academic in nature). Hmmm...anyone have any ideas? Her teacher is open to ideas!

Miss M. earns "Miss M. money". Money I made with her picture on it when she transitions in the expected time. She gets to earn a reward when she collects so much. They try to have a reward each day to help her connect the behavior with the reward. She usually earns free reading time or going out to recess a few minutes early. They've also had her go out a few minutes late to recess when she didn't go in from the previous recess without fighting. She has trouble with all transitions (lunch, restroom, recess, etc). And this has really helped her. She has more positive notes than negative ones now.

Does she read yet? A schedule helps many of our kids. If she doesn't read then a picture schedule. A count down reminder, "Violet, in 5 mins. it will be time to come in from playground, "3 mins and it is time to come in." " 2 mins......" "Violet, one more min. and it is time to come in". Also, "it is time to....... do you want me to pick you up or do you want to do it yourself? "

Do you know if they are using “Precision Commands”? I just learned about this method of communication for behavior issues this year. It would be something like this, (1st request) “Violette, it’s time to come to my desk for one on one activities, now please.” If she doesn’t respond. (2nd request) “Violette, I NEED you to come to my desk for one on one activities now.” If she still doesn’t respond, “Violette, I need you to come to my desk now. You can come by yourself or I can help you come to my desk.” Still doesn’t respond. Teacher takes her by the hand and helps her to the desk. “Violette, I get to help you walk to my desk because you didn’t come on your own.” All said with a kind, nice tone. You wait 5-10 seconds before each request. We count to ourselves because 5 seconds is a lot longer than it seems. The person sending the requests should get down to eye level with the child and remain looking at them so they know you aren’t going to “forget” that you asked her to do something. 

 ‎^^These are all great suggestions :)! We ask Miss. B to help a friend do (whatever it is we want her to do)...which works most of the time. We also ask, "Miss B., how old are you? You're a big girl now/You're in pre-k. Big girls/kids in pre-k do (whatever it is we want her to do)." But I am going to suggest to her teachers that they offer her the chance to do (whatever it is she is resisting) herself first, and then say they will help her do it if she won't do it herself. She wants to be independent! What about Violette...does she seem proud of being "big" or doing things herself?

Melissa, Miss M. had this problem start this year in K. Believe it or not..earning stickers on a chart worked! Can you believe something that simple!!??? If she needs any personal reminders or someone to personally come get her off the slide, no stickers. Simple as that.

If they are using a positive reward chart, have them tell her it is time to go inside and put a sticker on the chart for being such a GREAT listener. make it positive. THEN, go to the dollar store and get some teacher notes, and fill them out with "I DID IT MOM!" written on them. When she listens, and gets a sticker on her chart, she ALSO gets a note to bring home to mommy, who will make a HUGE fuss about it and celebrate with some fun mom and V thing. Thus, the positive reward extends throughout her day. Positive behavior plans work wonders, if done right.  The reason for the mommy note, by the way, is because you may not hear from the school on any given day, it may be every few weeks etc, and our kids need immediate acknowledgement of the good behaviors. The note will be something she is excited to bring to you every day, and a great barometer of how she did.

We do something similar to what was described above: 1st we are lining up, then we are going inside to do ____ activity. If he does not follow we give him the 1, 2, 3 count. It just seems that he needs to know what's coming next and the 1st/then approach works for him, gives a road map of what to expect.

 There is an Ipad app called First Then also, GREAT program you can really individualize!

 My 1st grader had issues at the beginning of the year, they resolved it by asking him to be the big helper for the kindergarteners in the resource room. He is paired with one younger child and has to help him line up. Worked like a charm!

 Maybe they could have Violette be the one who calls everyone to line up :) blow the whistle - ring the bell - whatever your class does?

We tried the sticker reward system and that worked for a few months. Her current reward is that she gets to watch 5 minutes of her favorite movie (Jungle Book 2) on a laptop. She loves her movies so this has been the best reward so far. Just have to be careful that no one abuses the reward and lets her watch more than her 5 minutes. So far so good.

 Along the lines of an idea above, could have her be the door holder or give her some other responsibility (bring in the jump ropes, balls, etc.). Be sure they include lots of praise for following directions. One school in our area takes laminated photos of all the different areas of school. They have the child bring in the photo of the next location and put it in a jar. Success is rewarded with a few minutes with a favorite toy or book. Could also have her choose a peer buddy to walk in with from recess. Great for social reinforcement.  Or provide choices..."Do you want to hold the door or choose a friend to walk in with?"

Miss P. teacher always grabs her before she blows her whistle on the playground, so it doesn't even give her a chance to run away or not listen. i'm good with that. :)

 

Teaching Colors to My Visual Learner

One of areas where Violette has had challenges learning has been her colors (for some reason she learned shapes without much work, lol, colors have been a whole different story.)  She's got them down (almost - still have problems sometimes with Purple, ironically.)

Anyway, I thought I'd share some of the MANY resources we have used to help her learn her colors. 

Home Grown Materials:

Here is a little 'game' Violette's wonderful pre-k teacher sent home for us to use.  It is a matching game, with colors. Each Square has velcro on it, and it is good for practicing matching words and colors.  The toughest ones are black and blue and purple and pink for Violette - I think she uses the visual of the words very much, so if she sees a letter B or P, she associates it with those colors.

My mother made this game for Violette for her birthday last year.  Each of these little tins is full of surprises in the same color as the tin itself.  It is a fun game for sorting, finding which is different (sometimes I'll put the wrong color in a pile - like a blue thing in the orange pile, and ask her to pull the blue one out of the orange pile.)  This 'game' is a lot of fun, and one we go back to a lot.

Tins:

Red Contents:

Yellow Tin

Blue Tin

Posters:

One of the benefits of being the third child is that Violette has received a number of hand-me-down learning materials of her sisters.  For the last 11 years, these four posters have been hanging in our "baby room" where Violette sleeps:

We've talked about each of the posters with each of the girls, and Violette was no exception.  Here is the color poster:

I picked these up at a bookstore somewhere along the way (I've always thought I should have framed these instead of the tape on the door, lol.  I'm lame, what can I say!)

Video

Violette loves the Blues Clues Shapes and Color Video (a Lilianne hand-me-down):

She also loves the Signing Time "Colors of the Rainbow" from Volume 6:

And Box of Crayons:

Learning the sign for the colors was very helpful - she still will often sign "green" before she will say it if she sees something green.

Books:

This little book from Woodbine House is great - the best part is that on the pages, there are also shapes with the color - so maybe a red square and a blue square later on in the book- this way you can check to make sure your child understands the difference in concept between shape and color.

Flash Cards:

These are great flashcards - looks like they are sold out right now at the BabyBumbleBee Site!  We love all of the BabyBumbleBee Videos - I really think they have helped with Violette's speech, especially the question video.

The nice thing about these cards is how strongly they support a visual learner - I've read that kids with Down syndrome do better with images of real things vs. drawings, and have found that to be true with Violette. Check out all of these "orange" objects. Each card is like this with a whole bunch of things the same color:

 So, that's it  - we spent a WHOLE lot of time at home thinking about and talking about colors, lol.  Thank goodness shapes came so much easier! Presently working on parallelogram, octagon and hexagon...

 

A Wonderful Old, But New to Me, Poem

Sitting on the Board of the Directors of the Down Syndrome Association of Greater Cincinnati is great. At our last meeting, we reminiscing about the history of DSAGC, and one of the founding members of DSAGC attended the meeting. She provided a good deal of history about the early days of the organization, and she also read this wonderful poem that appeared in the materials that they handed out back in the day (her daughter with Down syndrome, by the was is 30 years old, and it was so interesting to hear how full and rich her life is!)

See Me For Me

When you look at me -
What do you see?

When you look into my eyes
   Do you see beautiful blue,
   sparkling with joy, delight
   in my accomplishments
Or do you see that "almond shape"
   or "brushfield spots"?

When you look at my hands
   Do you see them reaching
   for toys, writing the alphabet,
   throwing a ball, doing a
   meaningful job
Or do you see a "simian crease"?

When you look at my face
   Do you see the resemblance
   to my parents, that I have just had
   my hair permed
Or do you see a "flat face" or
   "epicanthal folds"?

When you look at my behavior
   Do you see my feelings of
   pleasure and anger, my desire
   to achieve, my frustration in
   being treated like a baby
Or do you see the "stubbornness"?

When you look at my development
   Do you see me playing with peers,
   participating in sports, growing
   into a productive adult
Or do you see "low muscle tone" or
   "the eternal child"?


When you look at my family
   Do you see loving parents wanting
   to challenge me to my ultimate potential,
   sisters and brothers who have a better
   understanding of the differences in us all?
Or do you see a family torn apart by my
   difference, constantly in crisis, unable
   to accept, never to feel the joy of
   having a "normal child"?

What Do You See?
Look At Me.
Look Closer.
See Me For Me.

Written by :
Donna Roll
Dedicated to
Mary Ellen Graham
Founder of the DSAGC.