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!!!

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!

Gardner Publications named Family Business of the Decade for Greater Cincinnati http://bit.ly/22nhz7. Wow! What an honor!

NDSC Compendium Web Links - 2009

NDSC Convention Compendium Web Links

Since Violette was born, I've followed what has gone on at the NDSC Convention. It is the Annual Gathering of the DS Community. The first year she was born, the event was in Kansas City. I bought the CD's and listened to every single presentation in my car. With over 60 Workshops, it makes for a lot of information on Down syndrome! My girls kept asking me when I'd EVER be finished with the BORING CD's!

I went to the Boston Conference last year. It was great, and I learned a lot and more importantly got to know a bunch of great people in the DS community.

This year it was in Sacramento. I didn't go, but I did get the Compendium of all of the papers. I have the CD's on order.

I always wished that there were a spot online where I could go and click on all of the links for all of the presentations. This year, I decided that I really wanted them all in once place, so I went ahead and typed them all up. They are listed below. Some of the links I'm certain don't work - please leave me a note saying which ones are wrong and I'll check to see if they are bad links and try to correct them, or if it was my own error (which is more likely!)

Math Doesn’t Have to be a Drag

www.dsfoc.org -The Learning Program

http://www.see-and-learn.org/ - DownsED International’s See and Learn Program

http://www.downsed.org/discussion-lists/ - Join one of the DownsEd International’s Discussion Lists

Join One of the Learning Program Email Lists

thelearningprogram@yahoogroups.com – for anyone using LP materials

TLP_teacher2teacher@yahoogroups.com – for educators

http://www.downsed-usa.org/

http://www.learningpage.com/ - Math Worksheets

Behavior and Communication: Promoting Positive Behavior Change

http://www.apbs.org/ – The Association for Positive Behavior Support

http://www.pbis.org/ – Center on Positive Behavioral Interventions and support

http://rrtcpbs.fmhi.usf.edu/ - Rehabilitation Research & Training Center on Positive Behavior Support

http://flpbs.fmhi.usf.edu/ - Florida’s Positive Behavior Support Project

http://education.ucsb.edu/autism/JPBI.htm - The Journal of Positive Behavior Interventions

http://www.beachcenter.org/ – The Beach Center on Disability

http://www.behavioradvisor.com/ – Dr. Mac’s Amazing Behavior Management Advice Site

http://challengingbehavior.fmhi.usf.edu/ - Center for Evidence-Based Practice: Young Children With Challenging Behavior

http://www.iidc.indiana.edu/irca/ - Access Autism

Improving Feeding Skills and Speech Clarity: Using Oral Motor Therapy

http://www.talktools.net/

A Land of Opportunity: Increasing Diversity within Your Organization

http://www.ndsccenter.org/

http://www.tash.org/

http://www.ndss.org/

http://www.downsyndromeindiana.org/

Resources for African American Families
http://www.prince-evan.net/ – National Minority Families Down Syndrome Network

http://smith-smiths.blogspot.com/


http://zyonair.com/blog1/


African American Parents of Children with Down Syndrome (Facebook Group)

Resources for Latino and Spanish Speaking Families


http://www.downsyndromeinfo.org/resources

http://www.nads.org/pages_new/new_parents/support_spanish.html

http://www.down21.org/

Resources for Asian American Families

http://health.groups.yahoo.com/group/asianparentsgroup/

http://www.hawaiidownsyndrome.com/

http://www.bradnet.org.uk/

http://www.p2ppower.org/

Special Needs Trusts as an Advocacy Tool
http://help.senate.gov/Hearings/2005_10_20/Lawhead.pdf

http://www.achievingindependence.com/

http://caremanager.org/ - Association of Professional Geriatric Care Managers

http://www.guardianship.org/ - National Guardianship Association

Growing Up, Growing Older, Mental and Physical Wellness in Adults with DS

www.advocatehealth.com/adultdown

Planning for Adult Communication Needs and Skills During the School Years

http://www.thegraycenter.org/


http://www.dimagine.com/index.html


http://www.modelmekids.com/


http://www.sandbox-learning.com/






Volunteering and Service: Meaningful Opportunities to Foster Community, Independence and Develop Skills


http://www.nationalservice.gov/


http://www.serviceandinclusion.org/






DS Cognition Research: “Unprecedented” Progress and Promising New Therapeutic Strategies and Opportunities


http://www.dsrtf.org/


http://www.dsrtf.org/news-ds.htm


http://www.dsrtf.org/news-dsrtf.htm






How Current Congressional Activity and Federal Legislation Affect You


http://www.passthecommunitychoiceact.org/


http://www.passtheclassact.org/





A Brave New World? Prenatal Testing and DS


http://www.brightertomorrows.org/


http://www.downsyndromebrochure.com/


http://www.mhdsa.org/videos/VirtualVisitsFamilyNewParents.htm


http://www.dsagc.com/


http://www.dsact.com/index-2.html


http://www.dsagc.com/programs_adoption.asp


http://www.reecesrainbow.org/


http://www.dsaoc.org/programs/tunnelEnglish.pdf


http://www.kcdsg.org/files/content/NewBeginningsMagazine.pdf


http://canisterco.com/books/index.html


http://www.dsact.com/images/docs/07LtrtoExpectantParents.pdf


http://www.bandofangels.com/


http://giftsds.segullah.org/


http://www.lopsidepress.com/pamphlet


http://anniegroves.wordpress.com/2008/01/12/the-phone-call-the-day-and-the-doctors-office/


http://catholicnewsagency.com/new.php?n-13408


http://www.timesonline.co.uk/tol/comment/faith/article2343739.ece


http://www.smh.com.au/news/health/increase-in-down-syndrome/2008/05/15/1210764961237.html


http://www.cnsnews.com/Public/content/article.aspx?RsrdD=33833


http://www.thinkcollege.net/


http://www.dsagc.com/programs_adoption.asp


http://www.webmd.com/cancer/news/20080102/down-syndrome-may-curb-cancer


http://www.sciencedaily.com/releases/2008/02/080204143158.htm






Open Your Gifts: Sharing the Riches of Parenting A Child with DS


http://www.ltbds.org/ – Lives Touched by Down syndrome


http://acog.org/from_home/publications/press_releases/nr01-02-07-1.cfm


http://www.newscientist.com/article/dn11095-noninvasive-downs-syndrome-test-shows-promise.html


http://www.nytimes.com/2007/05/09/us/09down.html?_r=2&pagewanted-1&oref=slogin


http://www.news.harvard.edu.gazette/2005/02.02/27-down.html


http://giftsds.segullah.org/gifts-outreach-program/






Employment for All: What you Need to Know about Supported and Customized Employment


http://help.senate.gov/Hearings/2005_10_20lawhead.pdf


http://www.emplink.org/


http://www.cdhs.state.co.us/ddd/PDFs/AdHocCommitteeonEmpAndCommunityFinalReportEmployment.pdf






Universal Design for Learning: Meaningful Access to the Curriculum for All Students


http://www.cast.org/


http://www.udl4allstudents.com/


http://udleditions.cast.org/


http://osepideasthatwork.org/udl/index.asp


http://www.tash.org/dev/tashcms/ewebeditpro5/upload/UDL_NCLD_Parent_s_Guide.pdf


http://cast.org/publications/UDLguidelines/version1.html






Why Not College? Start Planning Now


http://ndss.org/index.php?option=com_content&view=article&id=126%3Atransition-apostsecondary-initiative&catid=48%3Alegislative-and-policy-agenda&itemid=143&limitstart=1


http://www.thinkcollege.net/


http://uclaextension.edu/pathway


http://uclaextension-pathway.blogspot.com/






Comprehensive Special Needs Planning: Life Resources, Financial and Legal


http://www.coloradofinancialpartners.com/






Issues and Concerns during Pubescence


http://www.marshmedia.com/ – Guides to Growing up


http://www.stanfield.com/ – Changes in You, etc.


http://www.kingcounty.gov/healthservices/health/person/famplan/educators/FLASH.aspx (be sure to scroll down to lesson plans for special education)


http://www.woodbinehouse.com/


http://www.futurehorizons-autism.com/


http://www.dsansw.org.au/index.php?pg261


http://www.specialneeds.com/ – Changes in You


http://www.cdss.ca/en/store/sexuality_and_relationships.htm


http://www.americangirlsstore.com/ – The Care and Keeping of You






Creating a Collaborative Environment>


http://www.blueribbonschools.com/






5 Secrets of Effective Parents


http://www.becomeabetterfather.com/






Supporting Higher Math: Songs, Stories, Games and More


http://shop.downsed.com/epages/DownsEd.sf/en_GB/?ObjectPath=/Shops/DownsEd/Products/12101-001801


http://www.epsbooks.com/ – Attack Math

http://avcsbooks.com/ – Attack Math, Developing Number Concepts


http://www.mathusee.com/worksheet/worksheet.html


http://www.rocknlearn.com/html/telling_time.htm






Personal Safety Skills, Self-Determination and Abuse Awareness>

http://www.safelifeproject.org/






Visual Tools & Strategies


http://asksaal.org/


http://dimagine.com/


http://disabilityisnatural.com/


http://disabilitysolutions.org/


http://HSRI.ORG/LEADERS


http://inclusion.com/


http://inclusiveschools.org/


http://kidstogether.org/


http://normemma.com/


http://peakparent.org/


http://www.usevisualstrategies.com/






Strategies for Teaching and Supporting Healthy Sexuality

>
http://www.parentingpress.com/ – Loving Touches


http://www.teach-a-bodies.com/


http://www.annickpress.com/ – The Bare Naked Book


http://www.newmooncatalog.com/ – The Period Book


www.roeher.ca/english/about/about/htm - Out of Harm’s Way


http://www.prometheusbooks.com/index.php?main_page=index&cPath=96_127 Did the Sun Shine Before You were Born?


http://www.rcpsych.ac.uk/publications/bbw - Books Beyond Words


http://www.dsansw.org.au/index.php?pg=261- Talk to Me


http://www.jkp.com/catalogue/index.php/cat/autism


http://www.pbrookes.com/


www.roeher.ca/english/about/about/htm


http://www.dsansw.org.au/index.php?pg261

http://www
.diverse-city.com/ – Just Say Know


http://www.brokespublishing.com/store/books/walkerhirsch-67144/index.htm


http://www.jkp.com/catalogue/index.php/cat/autism


http://disabilitytraining.com/sexed.html


http://poetv.com/video.php?vid=10537


http://www.pfg.unc.edu/~ncodh/pdfs/providersguide.pdf


http://egeneralmedical.com/familyhealth.html


http://www.fpg.unc.edu/~ncodh/pdfs/wbhealthy.pfd


http://www.yai.org/ – Relationship Series

More Signing Time with Violette

Just realized I had a bit more to say about Violette's signing. I wrote a little bit about it in a previous post.

One thing that I've noticed really has helped her with her attention is when I say "look at this" I first get her attention and get her looking at me and my face, then make an L at my eye level where she can see it and say "look" having her follow my L to what I want her to look at. Then I'll ask her which she wants. For whatever reason if I say "look at the dog, Violette" she would look at me, and not turn her head to look the direction I wanted her to. With this little technique, it seems to have helped her learn what "look" means.

I also will sometimes notice if she is holding onto something, she won't sign - I'm not sure if she thinks her hand is too busy holding up what she's got it on to sign, but usually I'll move it and let it be free when I want her to sign.

Violette loves popsicles. That was a great motivator. The sign is pretty easy (we use the sign for ice cream), and I could work on "more" and "popsicles" and "please." I'd say if you are working with your child on the signs, try to find a sign that is an easy "win." "Cookie" was another one that worked well to get her motivated.

I did some hand over hand at first, where I would first model the sign, then pick up her hands to get her to do it. I alway make it a game - like it is the most fun thing in the whole world, and I praise her when she gets it right. I also think you need to be pretty loose at first in praising the early attempts at signs, even if they aren't perfect. Communication is the name of the game.

We also will sit in a circle and play games with her sisters and we all sign. It can be with a ball, or with music, or with a toy animal. We always play fun games with the signs for "wait" "go" and "stop." That's fun in almost every situation - particularly on the swing set.

Or I'll quiz her sisters on all the signs they know - and her father too. It was really funny one night. We were playing show me the sign, where I rapid fire ask everyone to show different signs they knew. Violette was right in the game, watching and playing along. Then we played "let's quiz Daddy." He's getting better, but doesn't have nearly the vocabulary that the older two girls and I have. So I was rolling through signs. I got to the sign for "Game." http://tiny.cc/C3Gvz He was totally perplexed, and I happened to look over at Miss Violette and sure enough, she was signing GAME perfectly. Cracked all of us up, because none of us knew she knew the sign but she sure knew she did!

The really cool thing that is happening lately is that she is saying the words as she is signing them. Everything I read told me she would talk when she could talk, and so far, it sure has been the case!

How We've Encouraged Violette to Use Sign Language

I've had a few people ask me what we do to encourage Violette to sign so well, so I thought I'd post here what has worked for us.

The short version of why she signs so well is that she is exposed to a lot of sign, all the time. Her sisters (who are 4 and 9) and I took up signing as a hobby, and got a lot of exposure to sign right after she was born. We invested in a season of Signing Time the Christmas after she was born, and I basically forced the kids to watch it, lol, and started quizzing them on the signs in the videos. Violette loves ST - it really holds her attention.

Then I taught the girls to always sign the signs they knew when they were talking to her. We started slow - more, all done, potty and eat and drink. We've always tried to stay right ahead of her interests, so if we were going to a farm, we'd learn the farm words. Holiday? We'd learn the holiday signs. It has really been a hands on game with me and all 3 of the girls. I'm convinced at some point in their later lives it will come in handy - many schools teach sign as a 2nd language so you don't have to take German or French or Chinese or Spanish. My oldest is taking Spanish at school, so she enjoys the idea that she is learning 3 languages.

We incorporate sign very fluidly in our day to day activity with her. When we are playing, we will sign "more" "wait" or "stop." We sign food words. We sign the ASL signs for the itsy bitsy spider, etc. Our sitter also has watched a lot of hours of ST and willingly has learned and used sign with her as well.

Two things have motivated me. One is that I have no idea how far Vi's spoken language will progress - so basically I've assumed that there is a possibility that sign could be her major communication device and decided to be as serious about signing with her as I would have been if she had been born deaf or hard of hearing. Most kids with Down syndrome do learn to speak - they are just delayed compared to typical kids. If she isn't going to talk for a few years, why not have a way to communicate with us so she keeps trying to communicate.

The other is that I have wanted to learn to sign since I was about 11 years old. I had been on a big Helen Keller kick as a child - she was always so inspirational to me. Now that I have a practical opportunity to learn it, and a good excuse, I've really put my head down to learn sign.

We love Signing Time, and we have really enjoyed this site: http://www.signingsavvy.com/. The older girls ask me all the time "Mommy, what is the sign for X?" and I use signing savvy. They also have a great list of baby signs.

I'm amazed at how well she knows those signs. I'd say she knows at least 75 signs now, and she adds more all the time. I love calling out signs at random that she knows and asking her to sign the words like she did on the video on the blog. Most of the time she can sign them as fast as I can say them. It is really fun now when I show her a new book how she will sign things she sees on the page - I know she is associating the sign with the object.

For us, it really hasn't been a big deal that she isn't speaking more (though she is starting to attempt to say more things, which makes me happy) because she is so communicative through sign. It has been really cool to watch how quickly she picked some of them up from Signing Time.

There are so many advantages to signing as a parent, even with our typical kids. If we are ever in a situation where our little angels are misbehaving, without saying a word to call them out, we can communicate with them.

2 years with Violette, 2 years with Down syndrome

Today was a day of celebration. Miss Violette turned 2 years old today.

I can't believe it. The day she was born seems like it was just yesterday. It is a day and a time that is etched in my mind, and always will be. When my good friend, my OB, Megan said the words "She is beautiful, she is perfect and I'm quite sure she has Down syndrome" I felt as if all the air and light was sucked out of the room. This strange thing - this scary thing - this unknown thing - had suddenly come into our lives. Down syndrome. Nothing would ever be the same.

Here are a few of the crazy things that fear and ignorance led me to think:

• We would never go on vacation


• We wouldn't be able to eat out


• She wouldn't wear Lilly Pulitzer


• She would be a burden


• I'd have to "teach" her everything


• We'd be in dreadful therapy all the time


• She'd have major health issues


• We'd love her in spite of the fact that she has Down syndrome


• She'd be "different" from the rest of us


• She wouldn't communicate with us for a long time


• Life as we knew it would change

It is so hard to explain to anyone who doesn't have a child with Down syndrome (or a sibling or a grandchild) that for me, I was LUCKY to be The One in the 1 in 16 odds I was given that she would have DS. She is, in a word, extraordinary.

I was so wrong about the things I had feared:

• We've gone on several vacations, including to Walt Disney World


• We eat out all the time - she loves it and is very well behaved (most of the time!)


• She wears Lilly Pulitzer when her mommy dresses her in it, and looks adorable!


• She is a joy


• She has taught me everything


• Therapy is fun for her and I have loved meeting with and learning from her therapists


• She's had only very minor health issues


• We love her including the fact that she has Down syndrome


• She's so much like the rest of us, and she so fits in with us


• She has been communicating with sign language since before she turned a year old, and she signs over 70 words now, very clearly
  

Life as we knew it would change. I was right about this one. Every new little person in your life changes you. But I never would have suspected 2 years ago right now, that the change would have been wrapped up in all of the joy and humor this little person has brought into my life.

As a family, we've learned a new language. We all know many signs, and love having a cool secret language that we know. The girls know what "Down sind-wome" is, as Lilianne would say. The words which were so very difficult to choke out for me at first now roll off all of us as easily as we say Vivianne is left handed and Lilianne has curls. It is just a characteristic. It isn't a person. It doesn't define her. It is a trait.

I've changed - I am on the Board of Directors for our Local Down syndrome organization I know as much about the subject of Down syndrome as anyone really needs to know. I am a strong supporter of women online who receive a prenatal diagnosis that their child has DS. I know what a difficult time that time is, and what it is like once you get past it. I've also benefited from meeting many people with DS, including a woman who works at 5/3 Bank, who has been an e-mail pen pal to me. I've asked her a million and one questions about what it means to have Down syndrome as an adult in Cincinnati. This wonderful young woman's articulate, kind (amazingly quick) e-mail responses have told me that everything I had dreamed about for Miss V the day before she was born are indeed still possible.

Steve and I both now look at other children and people with disabilities. I see them now much more clearly, and I see how many of them are so cherished by the people who love them.

Tonight, a very sweet two year old had a birthday party. She wore a little hat. She blew out candles on her cake. She fed herself pizza. She went crazy over her presents. She thanked everyone who gave her a present. And she laughed. She laughed a lot. Just like any other two year old.

Thanks for reading this far. We'd love it if you would join Team Violette at this year's Buddy Walk http://tiny.cc/Cz2kh. The Buddy Walk isn't like many of the walks you may participate in. We aren't trying to find a "cure" for Down syndrome. Instead, the point of the Walk is to raise awareness for what DS is, and what it isn't, support families like ours (and they are amazing at support!) and celebrate extraordinary lives.

Happy Birthday Violette!

Animal School & problems with cookie cutter school curriculum http://ping.fm/viP40

Things You Might Want if Your Baby Has Down Syndrome

When you have a child with Down syndrome, there are quite a few developmental things that are pretty cool to have, and some stuff to be aware of. Anything we can do to help our little one's brain's and body's grow is good stuff!

There is also a list on the Down Syndrome Pregnancy Blog that has additional suggestions - be sure to read the comments!

Here are some of my favorites - things I used and loved, and things I wish I had:

Videos

Our little people are very visual learners!

Love and Learning apparently helps them learn to read the sight words - it is pricey, and it features kids with DS. Lots of families have been very successful with the program.

http://www.loveandlearning.com/home.shtml

Signing Time is a fun, fun, fun way for you and your child to learn to sign - most kids can generally sign before they can speak, so signing is a great bridge language for them. If there were one thing on this list (other than the nose fredia which I'll get to in a bit) it would be this.

http://www.signingtime.com/

Stuff

I never had one of these slings, but it apparently is built to support their little legs better than a typical baby carrier that spreads their already loose ligaments even more:

http://www.babyktan.com/

How cute are these for chilly times at therapy?

http://www.babylegs.net/

Now, my baby rolls all over the place now, but I still start her off at the top of the crib with this wedge underneath her. Our kids tend to get reflux quite a bit, and this helps elevate them. I put UNDER the mattress.

http://www.target.com/Safe-Lift-Deluxe-Universal-Wedge/dp/B00067AUP2

Toys

One of my favorite first toys - this one is so easy to spin and get moving at such a early age - Violette loved it!

http://www.amazon.com/LeapFrog-Spin-Sing-Alphabet-Zoo/dp/B000NRX5XE/ref=sr_1_1?ie=UTF8&qid=1242008836&sr=8-1

Big fan of the Fridge DJ - make sure you get this one and not the Learn and Groove Radio! It plays really cute music and plays a lot of alphabet and number songs

http://www.amazon.com/LeapFrog-Fridge-Magnetic-Learning-Radio/dp/B000EULX8E

Because our kids are so cute, why not give them a way to look at them self all the time?
http://www.geniusbabies.com/lamfirmiraww.html

Tummy time, tummy time, tummy time. I was told that tummy time was the best way to get my baby strong all across her body. This little toy really helped get that tummy, and neck, strong!

http://www.geniusbabies.com/spin---explore-garden-gym---lamaze.html

Melissa and Doug make THE BEST toys for any kids, but I think there are so many that they have that are helpful with a lot of the things that our kids have deficits in. Love some of their simple puzzles (check out the jumbo knob puzzles)

http://www.melissaanddoug.com/shop.phtml

Congestion and Reflux

Our kids tend to get a lot of yucky congestion - I loved this to help that out:
http://www.drugstore.com/qxp148010_333181_sespider/simply_saline/sterile_saline_nasal_mist_baby.htm

Speaking of yucky, this product isn't for the weak of heart, but dang, does it work. After you see your LO suffer for a while, you'll want one of these. Trust me.
http://www.nosefrida.com/

Books

First, don't read anything that wasn't published in the last few years. There is a lot of outdated information out there, and some of might wrongly scare you because they are based on old thinking.

I Can. Can You? Is such a cute little board book featuring kids with Down syndrome. My Child really like it, and the one that I have listed underneath it!

http://www.amazon.com/Can-You-Marjorie-W-Pitzer/dp/1890627577/ref=sr_1_1?ie=UTF8&s=books&qid=1242009472&sr=8-1

All of the Woodbine books are really helpful. Don't be overwhelmed by all of the information in them - I just pull them out every so often to see what suggestions they have for where I think my baby is at any given time.

http://www.woodbinehouse.com/Down-Syndrome.29.0.0.2.htm

I love these little books too!

http://www.woodbinehouse.com/main.asp_Q_product_id_E_978-1-60613-000-1_A_.asp

Let me know if you have any good things that I've left out.

Can anyone explain

All of these social networking devices? I'm baffled!

tiny.cc/v5Fzi

So many places to network, so few to network with.

I only have a few following my blog...how can I possibly follow everyone? What does it mean for business media?

HELP!

Today the Board of our local Down Syndrome group met with our congressional representative. We talked to her about the importance of pre tax savings account plans for people with special needs (they allow parents of kids like Vi to set up savings plans that don't conflict with their abillity to get social security or Medicaid), and I spoke specifically about the need to fund the Kennedy/Brownback bill and what I personally think will come of better prenatal information getting into the hands of women who have a prenatal dx of DS or other birth defects. I also talked about the women I have been able to meet on the web who have had bad experiences with their obs.

We talked about adoption, and our strong local program with a 250 person wait list for kids with DS. We also talked about what the stimulus could do for our organization (the answer was call my office.) Another subject was DS National Institute of Health funding. I brought up the fact that there is a lot of learning that scientists can do not only about people with DS with research $$, but that they can also learn more about how typical folks can avoid certain diseases like solid tumor cancers, that our kids don't tend to get. She said that sort of information was very very helpful to her.

She also announced in our meeting that she is going to join the DS caucus. And she spoke about Cathy McMorris Rodgers, a congresswoman with a child with DS. She said how lovely she is, and what a strong advocate she is within congress for kids with DS. She said that her little boy is SOOOO cute and that she brings him around a lot to the house. She talked about how wonderful it was when she was pregnant, and how they had a shower for her, and what a shock it was to everyone when her little boy had DS.

It gave me a very strong feeling that our children are in the hearts and minds our our congressional representatitves.

Only thing she said that I didn't care for was mentioning "normal" kids at one point. I think I will encourage our Executive Director to send aid some people first language information. All in all, though, it was a great day!