Sunday, May 22, 2011

My Favorite Posts for New Moms with Kids with Down Syndrome

In anticipation of meeting with some new moms with new little ones with Down syndrome, I thought I'd do a quick summary of all of my favorite posts on my blog.  In addition to learning about blogging for my day job, I wanted to have a nice archive for some of the most frequently asked questions over on Baby Center so I didn't have to re-type all the answers each and every time something came on the reddish colored text to link into the posts.

Anyway, this is a boiled down list of all of the things I've learned and wish I had had in my brain when I had Violette!

First a few posts about language - how many people like to refer to their kids with Down syndrome is here, and why certain types of questions - "how severe is it" and "is she high functioning" are such odd questions to us as parents is here.

Now a few about pregnancy - first a post about the history of my pregnancy as I recreated it from posts to my wonderful friends at my October 1999 Birth board is here, and what has become one of the most popular posts on my blog, 50+ things to do instead of worrying during a pregnancy with a child with Down syndrome is here.

After the baby gets here, most moms are concerned about milestones - so I have a post of handy links for the best milestone charts and links for a baby with Down syndrome here.   I also put together a list of things we did with Violette during her first year, and what I wish I had known about here.  Many mom's are worry about if they are doing enough therapy with their kids - I wrote about how therapy practice works in our house here.

A few practical things that everyone seems to want to have more information about can be found here: the benefits of signing and more thoughts about signingspoon feeding techniques and wearing her glasses.

Supplements, therapies and controversial approaches are things that parents seem disappointed that they didn't know were available. In my post, I've listed almost all of the approaches that are promoted, as well as any research I've found that is counter those approaches so families can see both sides of the coin. I add to this post as I learn new things or run across new research.  Parents also want to know what they can and should be doing for their kids with Down syndrome, as well as what research is taking place right now. I used this post to explain our approach to alternatives with Violette.

Adult life is a big concern for new moms.  I've written about what adults with Down syndrome can do, businesses owned by individuals with Down syndrome, and Prom Kings and Queens.  I need to find some new links on these threads some of them have expired - on the to do list!

I love connecting families with similar interests and issues to one another. I created a blog roll from our Baby Center Down Syndrome message board. The board is a one stop shop for opinions, answers and support - if you are looking for an outstanding community where you can find practical, friendly, supportive people with children with Down syndrome 365/24/7 the Baby Center Board is for you.  This blog roll is nice in that it gives a bit of background on who everyone is and any issues their child has had in the past.  I also wrote a post about why I think participating in your community group is so very important for you, your family and your children.  I have a huge group of friends on Facebook - if you are trying to connect with someone in your area or with a similar situation to yours, let me know and I'll do my best to help you find someone who has a similar experience.

The last post I'll link to is one of my very favorites - mostly because of the cute picture of Violette that you'll see on here!

I hope you find these helpful!

Friday, May 20, 2011

Links to Birth-5 Down Syndrome Education Articles

So my Ds BFF Nancy commented that she had been reviewing the information on the DownsEd site for Birth - 5. I think the DownsEd information is FANTASTIC, but I think their site navigation is VERY difficult. Sue Buckley is a mother of a child with Down syndrome, and a fantastic researcher.  The FREE Orange County Learning Program is based on Sue's methodology for teaching reading to children with Down syndrome ( We've used many of these materials with Violette.

Anyway, Nancy inspired me to see what was out on the site; I should be reviewing this information frequently - it is just that good. I've never been through everything they have on birth - 5 out there. So I copied each link below. In some cases these are overviews, and in some cases they are specifically birth - 5 focused. Glad to have them all in one place so I can review them.

AN IMPORTANT NOTE: Each of these landing pages is just the start of the article - if you click on the sublinks on the right hand side the articles are broken into multiple sections. If you just read the page these links direct you to, you haven't read all of the information!

Living with Down syndrome - Overview

Overview - Birth – 5

Motor Skills -Overview

Speech and Language- Birth – 5

Reading and Writing- Birth – 5

Number Skill Development- Birth – 5

Social Development (overview only)

Memory Skills (overview only)

Family Issues (overview)
Education Issues (several)


Saturday, May 14, 2011

The Prom King and Queens With Down syndrome

In our local paper today there was a great story about two young people with Down syndrome who were named Prom King and Queen at their school.
I've thought a lot of this. When I first read about a few of these stories, I wondered about the sincerity of the kids casting the votes, and I thought it was a fluke - one particularly kind group of kids in a hard, ugly society.

As this article points out, though, including children with Down syndrome changes things for the kids with Down syndrome, and it changes things for their peers. 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 like that.

I asked my guidance counselor from High School (who had just told me how great our districts programs for children with different needs were) where the kids with Down syndrome were when I was in High School in the Early 80s?   They were in institutions, or in completely segregated classrooms.  At that point they didn't have rights to be in public, go to Kroger, go bowling, have jobs.  
It is much easier to think about Violette's future when I read these stories and know that our world, while still not perfect, at least has more pockets of acceptance for differences!   Who knows - maybe someday SHE will be Queen (which given that I didn't even go to my Prom seems an amazing concept to me!)

Here is the Story about the Loveland King And Queen.
And a few others:
This one is from last year, but she's too darling not to post!
Long Live the King and Queen!