Happy Halloween!

31 for 21 - 21 Things About Violette That Have Nothing to do with Down Syndrome

1. She has great hair
2. She likes Elmo
3. She likes Toy Story and thinks the aliens are funny
4. She likes to play with the doll house
5. She loves books
6. She love to draw with pens
7. She loves to draw with markers
8. She loves to draw with crayons
9. She loves to play with her magnadoodle
10. She thinks it is funny to brush her teeth, and reminds me to do it every night
11. If she wants something she yells MMMMIIIIIIIIIINNNNNE - one of her best words
12. She likes to kiss everyone good night before she goes to bed
13. She loves her preschool and knows all of the routines
14. She loves helping out around the house, including washing veggies and putting the clothes in the drier
15. She doesn't like when the doctor checks her ears, or if we get near them
16. She thinks the word "snuffleupagus" is funny
17. She likes Pirates Booty
18. She really likes popsicles
19. She enjoys the Hokey Pokey and any music that involves action
20. She can say doot doot dora and BackPack and LOVES to watch DORA
21. She sleeps with a little soft pink bunny blanket that looks alot like this one

31 for 21 - Lucky

When I was given 1 in 16 odds that my baby would have Down syndrome, I thought that getting to be the 1 was somehow the unlucky thing to be. See, I've always been the luckiest person I know. I have a great great life.

So, right after the words "She's beautiful and she's perfect and I'm quite certain she has Down syndrome" came out of my good friend (who decided to be an OB instead of the psychiatrist I always thought she would be), I started questioning my luck. It just didn't make sense. Why did my luck suddenly run out?

I spent about 2 weeks questioning where my luck had gone. Then I woke up from my fog, and I looked at Violette. And things were about 85% totally normal in our lives. Then they were about 95% totally normal. So I stopped thinking about where my luck had gone, and just started living. And Violette was so sweet. And then I started to realize, that I was meeting new people, had this wonderful support team I got to work with, and I met other parents of kids with Down syndrome. I saw how great, and yet normal their lives were. And then I saw how great their kids were. And then I met person after person who had a child, or a sibling, etc. Then I listened to every single presentation from the Down syndrome Conference in Kansas City. And I heard so many adults with Down syndrome say "I have the best life ever."

Finally, I was looking at Violette giving me a sweet little grin where her whole face turned inside out, and I realized I was the lucky one to be the 1 in 16.

(here is that face I was talking about, lol)



Anyway, why all this talk about luck? We went to the Children's Theatre Gala for the Cincinnati Children's Theatre. They raffled off 6 prizes. As I was putting my tickets in the baskets, I thought. I'm so darn lucky. I bet I win something.

And we did! We won a big huge Bengals basket at the Children's Theatre gala tonight! 4 Tickets to a home game plus a parking pass, plus a ochocinco t-shirt, a sweatshirt, a signed football by Anthony Munyoz, a magnet for our car, a bumper sticker, a cap and a night at the Omni Netherland Hotel!

I never lost my good fortune. It keeps coming to me. I don't understand why, but I'm very very very thankful for it.

31 for 21 - What Lilianne Thinks

"I love Violette's little fatness. And Violette is cute. Violette is sweet. And I love her so much. I really like her name when I call her Puddy Tat. I love when she kisses me. I love her hugs. I love when I play with her. And I love when she says "Lili" kind of. Sometimes she helps me, and sometimes I help her." Liliane, Age 4

Oh, and we call Violette "Puddy", "Puddy Tat", or "Puddin' Tater", and have been for a while. Vivianne started calling her "Lil' Puddin' Tater" after something we think she saw on Boomerang when Violette was born, and it stuck!

31 for 21 - The Thomas Center for Down Syndrome

When I was given 1 in 16 odds that Violette would have Down syndrome, one thing I did was check out our local resources when it came to DS. I went to our Children's Hospital Website, and found this page:

http://www.cincinnatichildrens.org/svc/alpha/d/disabilities/clinical/down-syndrome-center.htm

I called Steve over to the computer, and said "look at that little girl...we could love her easily!" He agreed, she was adorable, and yes, it wouldn't be a problem at all to love her or parent her.

Since Violette was born, we've had so many wonderful experiences with the Thomas Center @ Cincinnati Children's Hospital. Violette goes up there every so often (odd times - I never like to do things on any regular basis, so we might go for a 17 month visit, or a 27 and a half month visit coming up, lol.) They have a team of experts at the Thomas Center focused on one thing - Children and Adults with Down Syndrome.

We have had their Physical Therapist look do an evaluation. We've done Occupational Therapy there. We are currently going to speech therapy there. We have loved EVERYONE on the staff (Miss Jennifer, her speech therapist is AMAZING with Violette.) Katie, David, Fran, Dr. Mattais - all of them are so great, and I feel interested in helping Violette any and every way they can.

Many people on the staff at the Thomas Center have Children with Down syndrome, or siblings with Down syndrome. It is such a joyous, hopeful place for us to go.

They have a new Director in place named Dr. Karen Summer. She is very much into research, and learning more about Down syndrome. We are really excited about what she will bring to the Down syndrome community in terms of knowledge.

They also have a woman who will look over any IEP's to make sure they make sense.

Vi is even a poster child of sorts for the Center - if you look on this banner from the Buddy Walk, the little silly thing (wearing Lilly Pulitzer which is funny if you read this post) second from the right is Vioette!



We're lucky to have the Thomas Center in Cincinnati.

31 for 21 - Tired

It's Tuesday, and I'm dragging...so it is off to bed early...but I thought I'd put up one of my favorite music videos! Check out the cutie with DS in here!

31 for 21 - DSAGC

You know the Buddy Walk? Well, all of the proceeds from the walk go to the DSAGC - the Down Syndrome Association of Cincinnati. I was told early on that if you have a child with Down syndrome, one of the best places for him or her to be born is Cincinnati Ohio. That is in large part due to the DSAGC.

We had Martha, the one woman welcome wagon of DSAGC, come to our home 3 days after we brought Violette home from the hospital. She told us so many wonderful things about what to expect from Violette. She gave us materials for us, for our parents, for our children, for our family and for our friends. She guided us. She comforted us. She has a grandson with Down syndrome - so we knew we could trust that what she was saying was true. She told us not to change our plans because of Down syndrome - not one plan, not one dream. That was wonderful advice.

DSAGC runs so many wonderful programs that will span Violette's life - from early age programs, to programs for people with a prenatal diagnosis, to programs for school aged children to programs for adults DSAGC focuses on the needs of people with Down syndrome and their families.

They also run something of an adoption clearing house, maintaining a list of over 200 families waiting to adopt a child with DS.

They also provide supports to teachers, and doctors with current information about what Down syndrome is all about.

I joined the Board of Directors for this group earlier this year, after having been a member of their marketing committee. It has been so rewarding to be a part of DSAGC. They are wonderful.

We always look forward to DSAGC events. They are our new wonderful extended family. And as Martha says "Down syndrome is like a club that you never thought you would ever want to be a part of, but once you are in that club you never EVER want to leave it." That pretty much sums up our experience.

Here is a lovely little video that DSAGC created. I know several of the families in the video!

The Journey Ahead from Christian Appleby on Vimeo.

So How "Severe" is it?

If you want to know a question that always puzzles a mama with a child with Down syndrome, one that would certainly be in the top 10 is "How severe is it?"  It is kind of like asking a bald man how severe his baldness is? Is it less severe when he's starting to lose the hair? Is it only severe when he's bald?  How do you measure that sort of thing? If you have high expectations, and she does well, does that mean it isn't severe? What if you had low expectations, and she's better than that - severe or not severe? Am I judging based on how happy she is? How well she does at playing games? Academically? IQ? How well she does physically climbing and such? Her health issues?  How she is compared to the other girls? It seems an impossible question to answer.

Every part of her 100% has Down syndrome - not a little, not a touch of it (that's for you, mom, lol), not "I don't see it in her it must be mild."  She is a person who has Down syndrome. On the one hand it is as 'severe' as it gets...LOL. On the other hand, there is nothing severe about Violette...she's just silly as you can see in this video from earlier today!  We, like most parents of kids with DS, feel like she's doing great!

31 for 21 - Buddy Walk 2009

Our Buddy Walk was today!

We had a wonderful time.  There was a group of about 20 of us walking. Thanks to my friend Tracey (in addition to all of our natural beauty), the team looked great!  Here is a picture of Team Violette:



And here is one of Violette and Lilianne:



So far we have raised over $1,800 for the Down Syndrome Association of Greater Cincinnati, thanks to our friends and family.  We are so lucky. We had so much fun. And we love Violette so much!

Thank you!

31 for 21 - Language Matters!

I thought it might be helpful to give you some information about what language most of us who are parents of children with Down syndrome prefer to hear when referring to our kids. If you didn't know the way we prefer it until now, please don't feel bad if you've ever written or said something that wasn't the way it is written below - many of us did the same thing until someone told us!

Below are tips for the proper use of language for ‘Down syndrome’. The National Down Syndrome Society and the National Down Syndrome Congress encourages the language below: 

• Down vs. Down’s. NDSS and NDSC use the preferred spelling, Down syndrome, rather than Down’s syndrome. While Down syndrome is listed in many dictionaries with both popular spellings (with or without an apostrophe s), the preferred usage in the United States is Down syndrome. This is because an “apostrophe s” connotes ownership or possession. Down syndrome is named for the English physician John Langdon Down, who characterized the condition, but did not have it.
• People with Down syndrome should always be referred to as people first. Instead of “a Down syndrome child,” it should be “a child with Down syndrome.” Also avoid “Down’s child” and describing the condition as “Down’s,” as in, “He has Down’s.” This seems like a minor distinction, but to me it is like the difference between someone telling you “you look pretty in that dress” vs. “that dress looks pretty on you.” One compliments the dress, the other is a compliment to you. 
• Down syndrome is a condition or a syndrome, not a disease.  
• People “have” Down syndrome, they do not “suffer from” it and are not “afflicted by” it.
• Our kids are "normal" (whatever that is, lol,) they just have Down syndrome. So we prefer not refering to kids without DS as normal (we haven't seen any that are yet, lol). We don't like that word much because it implies our children are abnormal. 
• It is clinically acceptable to say “mental retardation,” but you may want to use the more socially acceptable “cognitive disability,” "developmental delay" or “cognitive impairment.”

 Hope that helps!

31 for 21 - What Vivianne Thinks

Today, a few words from my almost 10 year old daughter Vivianne about her cousin, and sister. She entered this in an essay contest about living saints:

My name is Vivianne and my living saint my cousin, Joseph.

Joe is in the 4th Grade. He was born with a Mitochondrial Miopothy. That’s when you have trouble with strength in your muscles.

Here are a few reasons why he is my saint. First, when he was born the doctors said that they weren’t sure he would be able to talk or walk but guess what! So far he can talk and he can walk and he has now he has successfully locked my grandfather off of his computer. He is amazing using a computer – better than I am!

And in July of 2007 I had a sister and she has Down syndrome and I’m so used to having someone who’s a little different, I sometimes forget she has Down syndrome!

And I feel as though Joe showed me that just because you are different on the outside you are the same on the inside
That is why Joseph is my saint.

What Can a Person with Down syndrome do?

People with Down syndrome can do anything.

They are on Facebook, and maintain their own Accounts (I have 16 FB friends with DS)
www.facebook.com/pages/Blair-Williamson/107502043650

They can swim – one even swam the English Channel
www.karengaffneyfoundation.com/articles/channelawaits.shtml

Some like to sky dive
http://www.dailyherald.com/story/?id=305224

They do Yoga
http://sarahely8989.blogspot.com/2009/10/yogareach.html

Some are accomplished musicians
http://www.sujeet.com/

Some get married
http://andycamphotovideo.com/scarritt-bennett/josh-bernadettes-wedding-at-vanderbilts-scarritt-bennett-chapel-in-nashville/

Some are artists
http://www.usatoday.com/news/world/2008-02-09-artists_N.htm

Some are rappers
http://www.laz-d.com/

Some are hunters
http://www.deer-forums.com/discus/messages/2109/16257.html?1156184259

Some are history buffs, and authors
http://www.capecodonline.com/apps/pbcs.dll/article?AID=/20080706/LIFE/807060322/-1/news

Some even have tattoos
http://archives.chicagotribune.com/2008/jun/15/nation/chi-father-son_bdjun15

Some run their own businesses
http://media-dis-n-dat.blogspot.com/2009/04/man-with-autism-down-syndrome-runs.html

They can cut hair
http://www.ldnews.com/news/ci_14115863

They can be in a rock band
http://www.flametheband.com/

They can be in the National Honors Society
http://www.wellsphere.com/down-syndrome-article/student-with-down-syndrome-inducted-into-national-honor-society/880890

They can teach school
http://notableaccomplishments.blogspot.com/

They can drive a car
http://www.youtube.com/watch?v=tAoI0w1Pe_Q&feature=player_embedded#t=11

Work at a Hospital
http://www.dhmc.org/apps/vidPlayback/vidPlaybackPopUp.cfm?ID=11192&nativeCode=1+++





Pretty cool, huh? Anyone else have someone wonderful to share?

31 for 21 - Normal Life

Tonight I thought I'd share with you how we incorporate therapy and medical treatments into our day with Violette. You'll see how stressful it is (not!)

So tonight, Steve went to pick his mom up at the airport.

The girls wanted to go to Sonic Burger for dinner, and they decided to watch Toy Story in the car while we ate. I decided it would be a good time for some OT (Which is occupational therapy for those of you not parenting a child with DS.) Violette sat in her seat, drank her milk, put it in the cup holder on her car seat when she was done with it, ate a grilled cheese and french fries. Then she gobbled down a banana. I read the paper, and a magazine. That is what I call OT.

Next up was the medical portion of the evening. We went home. I had picked up some Nordic Naturals DHA Supplement for Violette to take today (DHA is basically fish oil, and this particular brand has a pretty good reputation with the other moms of kiddos w/DS) so I gave 1/2 a teaspoon of that to Violette. She took it great. Then she got her reflux medicine - she gets a 1/2 a teaspoon. Nasty tasting stuff that she loves. Again, she took it great.

We then moved into the PT portion of the evening (PT = Physical Therapy). She and Lilianne watched the Backyardigans. I ran upstairs and checked the computer. During that time, Lilianne and Violette danced in circles, and Lilianne pinned Violette down on the floor of the family room. Vivianne yelled at her to stop, and Violette fought her way out of the hold. It was a very active PT session.


I came back down stairs. Got her bottle together (a little more Dr. Mom - I carefully slop about a half a cap of Miralax into the bottle to keep her "regular".) Grabbed her to take her to bed - she kissed Lilianne goodnight, and came upstairs and kissed Vivianne goodnight.

Then more OT. We went in the bathroom and she brushed her teeth. And then I helped her brush her teeth. And then she spit out what was in her mouth, and I gave her a little drink of water.

Next up? Speech Therapy. We went in and changed her into her jammies. Then she signed "Book" to me. We went over to the rocking chair, and I read her two books. She LOVES looking at and listening to books. She's pretty cute in that she signs a lot of what she sees, so she's really following right along with it.

I then put her in her bed, turned on her music (Sounds Like Fun from Discovery Toys is what she listens to every night.) And then I left...

Then I heard her crying, which usually means one thing. And it did. The Miralax that keeps her regular, kept her regular yet again. I can set my clock by her poops, lol! While changing her I asked her all her body parts. She knows head, hair, eyebrow, eye, teeth, ear, nose, lips, tongue, arm, elbow, fingers, fingernail, heart, belly, tummy, belly button, bootie, legs, toes, toenail and knees. We are working on ankle.

So I changed her, and then she wanted to rock with me. She loves getting silly at this time of day, and seems to do the most of her talking then.

So we take advantage of this very active and alert time of day for Violette (when she should be sleeping, lol) with our most intense speech therapy of the evening. I usually will prompt her to say all the words that I know she can say. Things she can say include boat, more, mom, eyes, MINE!!!!, done, Dora and quite a few more. I'll ask her to say something, and she'll repeat it, or show me the sign. I'll try to sneak different words in to see if she comes up with the approximation. Now the whole time we are doing this, we are rocking back and forth, and usually she is standing on my legs, doing back bends, patting my hair, looking at my teeth, and just being silly and giggling.

Tonight I put a new twist on the game by asking her a bunch of words I knew she knew. Then I said, OH, Violette, I know an EASY word for you to say. She looks at me with big, expectant eyes. Then I said "Can you say Snuffaluffagus?" Her eyes got wider, and she shook her head NO!. I said "Come on, I bet you can say it! Say Snuffaluffagus?" To which she responded with the most hilarious belly laugh you can imagine. We did that about 10 times, with me feeding words she knows to her, followed by "Hey Violette, I know an easy one. Say Snuffaluffagus!" Each time she shook her head NO!!! Followed by both of us laughing harder and harder and harder each time I did it.

Finally she went to bed and was down for the night!

Phew. That therapy stuff really wears me out!

31 for 21 - Doctor or Dinosaur?

If you were a pregnant mother, and had been told your child screened positive for Down syndrome, and your fancy doctor who was going to be doing your ultrasound showed you a slide with this information on his web site, what would you think?

What are the problems with a child or adult with Down syndrome? Unfortunately, there are many. These include

mental retardation,

growth retardation,

early onset of Alzheimer’s disease,

congenital heart defects,

hearing loss,

eye disorders,

epilepsy,

gastrointestinal malformations,

hypothyroidism,

leukemia,

spinal cord compression,

increased risk for infection,

and infertility.


From www.fetal.com
You can see the slide if you click on the link in the center of the page that says "1rst trimester screening for Down Syndrome" and then look at the 6th slide

I wish all of us could have a list like this of the problems with being human. We all are predisposed to possible "issues." Some of us will get cancer at a higher rate, some have heart issues. Some of us are drug addicts, or alcohol addicts. Some have flat feet. If you totalled up everything that you might have, or your husband might have, or your typical children might have, and saw a list, you would live in fear.

In our case, so far, Violette has been quite healthy. She has a congenital heart defect, but it is minor. Thing about people with Down syndrome is that while "congenital heart defect" sounds frightening, where medicine is today, the type of heart defects typical of people with DS are usually treatable, and kids with DS do very very well after the surgery. Violette hasn't needed heart surgery, and if she does, it will be a minor procedure (believe it or not) where they will run something up her leg, and she'll be done.

Violette may have a "gastrointesinal malformation." She takes reflux medication every morning and every afternoon - a half a teaspoon full of zantac. No biggie if you stay on top of it. If you don't treat it, it can lead to serious issues. But we treat it, and she should be in good shape. (Her maternal grandmother has been taking meds like Zantac for the last 20 years for her "gastorintesinal malformation" and we all think she's more than OK.)

Other than that, right now she has bad eyes - like her mother and her father (and her grandparents and her cousins and her uncles.) And she'll be getting glasses.

This doctor irks me. I can't lie. If this slide was followed up with something about what life can be like for people with Down syndrome, a point to the quality of life of the family or a reference to learning more about DS from an organization that specializes in it (there are 5 clinics for DS in California, and several excellent parent support groups) I'd have more respect for what this doctor is trying to do. Why, for instance, didn't he comment on the fact that people with DS are less likly to get solid tumor cancers?

Doctors giving only one part of the story about Down syndrome should soon become the dinosaurs that they are. There is a new law, Public Law No: 110-374 is called the Prenatally and Postnatally Diagnosed Conditions Awareness Act.

It is the purpose of this Act to--

(1) increase patient referrals to providers of key support services for women who have received a positive diagnosis for Down syndrome, or other prenatally or postnatally diagnosed conditions, as well as to provide up-to-date information on the range of outcomes for individuals living with the diagnosed condition, including physical, developmental, educational, and psychosocial outcomes;

(2) strengthen existing networks of support through the Centers for Disease Control and Prevention, the Health Resources and Services Administration, and other patient and provider outreach programs; and

(3) ensure that patients receive up-to-date, evidence-based information about the accuracy of the test.

As for me, I don't spend a whole lot of time worried about Violette's health. Monitor it closely, yes, but worry about it, not so much. I feel she is here, with us for a reason. I want to enjoy living with her silly little self and not waste time worried about what might be. The list above is merely what is possible - not a definitive list of what is going to happen. It would have been nice if the doctor had pointed that out.

31 for 21 - Cheer

Do you have a little Down syndrome NFL Cheerleader? If so, send my friend RK a copy of a picture of her! We'd like to get every team, and as we already have the tricky Ben-gal, we think we might have a chance at it!



Visit RK here: http://justrk.blogspot.com/2009/10/31-for-21-cheer.html




And you can also check out her adorable daughter's blog here: http://braskabear.blogspot.com/




Here's a sneak preview:




!




WHO DEY!!!

31 for 21

Happy Down syndrome awareness month! This month, a lot of the mommy bloggers of kids with Down syndrome are doing "31 for 21"! It’s a challenge to post 31 blog posts the month of October to raise awareness for DS. Knowing my short attention span, we'll see how I do!

Anyway, if you have questions about Violette and/or Down syndrome, now is a great time to ask!

The Down Syndrome Homecoming Kings and Queens

In the last couple of days, I've seen 4 stories of people with Down syndrome being named king or queen of their schools (and if this year is like last year when there were at least 9, I bet more are coming - I'll update here as I see them):



http://www.volunteertv.com/home/headlines/59806182.html



http://www.kcci.com/education/21110021/detail.html



http://www.wbir.com/life/programming/local/liveatfive/story.aspx?storyid=99753&provider=gnews



http://www.citizen-times.com/apps/pbcs.dll/article?AID=/20090924/COLUMNISTS16/909240315/1044/COLUMNISTS



http://www2.wsls.com/sls/news/local/article/special_night_for_hidden_valleys_homecoming_queen/52197/



I've thought a lot of this. I wonder if it is possible that mainstreaming has something to do with this? Everything I've read about anyone with DS in the news seems to say that the other kids find the Kings and Queens with DS extraordinary. I've read so many times "I wish I were more like he/she is."



Then I start to wonder if the typical kids are so tired, so worn out of having to be "popular" and "fit in" that a vote for the child with DS isn't a sympathy vote - it is a vote against what teenagers are pressured to be and what they are pressured to value. Maybe a better way to say it is they aren't feeling sorry for her so they voted for her, they are feeling sorry for THEMSELVES that they live in such a cut-throat shallow peer group, that they rebel against it.



Face it, in any school the "popular kids" are almost as small a minority as the "special needs kids." Sounds to me like everyone in the middle is getting together and telling the kids at the top of the social pile that they are no more special than anyone else.



I kind of like that!