The Specials

Dear all
I have just found this British reality show. It is on the net and they encourage people to spread the word through their own blogs. It is hilarious. Four roommates, four of which have DS and one with Williams Syndrome. Here it is their first episode. Check it up!
Also clicking on the circle should, if it works, take you to their page...

The Family Hope Centre

For those looking for extra help.

Dreams come true

One for the basketball fans. This one really illustrates what the great spirit of sports is all about.

Gesture of Love

I am not sure I'll be able to make up for all the lost posts during my flu weeks. I'll try.
And tonight I'll post something sweet, rather bitter-sweet. This ad has won some kind of price at Cannes Film Festival. My friend Sonia has sent it to me. I am afraid I do not know anything else about it. Well except that I, once again wrenched my heart out.

Enjoy!

Gymnastics

Tonight I find myself looking at this girl thinking how daring she is. I wish I had the same power as she has on those arms and legs.

Madonna & R

Dear Ones

I, like most of us, have a bit of a complex relationship with, or rather towards Madonna. For me her posing for GAP kind of clarified things but this is way too much. Touches home too close I suppose. See what you think.

http://nymag.com/daily/intel/2009/10/hey_madonna_its_time_for_you_t.html#comments

Achievements

This is another encouraging story for us parents of children with DS, and anyone else indeed.

Courage

It takes a lot of courage to do what this woman has done.

Becci's Poem

I don't know if you have ever heard that "Friends don't count chromosomes"
This poem is just about that.
You may need to hear it twice!

Self advocacy

Hi there!
I hope you are all enjoying these little videos. The one for today is, in my humble opinion a must see.
Hope you agree.

And finally... DANCE

Dear all

I am proud to present this dance school from Madrid, Spain.
I have also found that the Boston Ballet has a program in collaboration with the Boston Children's Hospital but unfortunately their video can not be embedded.
Have fun!

The power of simplicity

Dear Friends
I am normally against the stereotyping of people with Down Syndrome, specially the angel kind. I believe it robs them of their most innate nature: human. I was however captivated by the power of this little piece.
It was presented ;
"This unforgettable and award-winning video from Iceland, conceived by and supervised by the musical group, Sigur Ros and the filmmaker, Agust Jacobsson, features the Perlan special-needs theatre group acting out a simple but beautiful play about the elements"
Slow down, relax and enjoy

Rapper power

I first came across Lazy-D a couple of months ago. I thought he was great. Unfortunately his videos cannot be embedded, but I seriously recommend checking him out.
For those of you new to Down Syndrome let me just say that the BUDDY WALK is an awareness and fund raising event that takes place around the end of September and all through October to celebrate Down Syndrome Awareness Month. This event goes on not just in USA but I have heard of it taking place in Afganistan!
Anyway this young man was performing at the BUDDY WALK NY.
Enjoy.

Weddings!

Dear friends
please, please, please take your time with this beautiful videos. Yes, do have your hankies close by.
Love
Rosa

Josh & Bernadette's Ceremony Highlight from AndyCam Productions on Vimeo.

Josh & Bernadette's Reception Highlight from AndyCam Productions on Vimeo.

3 for 21

Dear Friends

I doubt that many of you would know that October is Down Syndrome Awareness Month. Well, now you know!
I have decided to participate in something called "3 for 21", as in 3 chromosomes in pair 21.
The intention is to post something everyday during this month. See if I can keep it up.
Hope you like it.

The only way is UP!

Dear friends

I hunted this one a minute ago. I find it so encouraging, not only for people with DS but for anyone. How can you just not feel your heart opening and your spirit soar.
I hope you feel the same way.
Love
Rosa

Last Supper

Dear All

I hope you like this. I am open to dialogue. Yes, it is juicy, it is art.
Love
Rosa

By the way you can click to enlarge. The artist is Raoef Mamedov. Google him if you like his photographs are something else.

Like water to chocolate

My cousin Raul has sent me this piece of nostalgia. I was amazed by how much Leyla and I are alike. What do you guys think?
xxx

From Spain

Dear all

This movie has just opened in Spain. A love story between a guy with DS and a person with the right number of chromosomes.
The protagonist Pablo Pineda is, in his real life, the first European with Down Syndrome that has gained two university degrees. He is a Teacher and Pedagogist!.
Thanks Raul for passing this on.
There it is a trailer.

High as a kite!

Dear All

I am busy bee. Flying between bureaucracy with EIP (Early Intervention Program) trying to get speech therapy for Leyla, buying 1 inch wood cubes, not easy to come by, clearing cupboards for the winter, getting a ticket for Spain, arranging meetings with mothers of children with DS and creating a whole new world around me.
I found this video and hope you like it.
More soon...I promise

Tastes

I wonder wheather Leyla's liking the Kimonos has anything to do with her newly acquired ethnicity.
I am for a giggle tonight....

misunderstanding

Yes my dears. People seems to think that Leyla is an adopted Asian child. We keep hearing the question: is she adopted? I never thought I'd have the nerve to ask such a question myself. Obviously it is not such a big deal for some people. I love smacking them in the face. No, DOWN SYNDROME. Ah!, that is another terrain. You can hear them think -Let's get out of the store quick. How embarrassing! So much misunderstanding... My favorite however is the one that Carl gets when carrying Leyla in the Babyborjn pack and I am out of sight. Is the mother Asian descent? Yeah, as asiatic as Spanish rice. I do not know, maybe I should take it as a compliment but I wonder wheather Asian people would. So much misunderstanding.
Oh well. I simply laugh. And sure enough laughter is the best medicine at the moment.

Oops!

I forgot to mention that the pictures are from Indiana Modern Art Museum. I love fashion so we went to see the exhibits on the history of fashion. Leyla Loved the Kimonos, the rest she couldn't be bother and fell sleep.

busy or what?

  We have been back for almost two weeks and we are finally starting to feel at home. I have been busier than ever, cleaning and preparing for the Autumn. I have been looking for some new recipes to add to the winter menu and crochet projects to finish all the yarn in my, I mean Leyla's, wardrobe. 

I have also been buying play mats on line. We decided on the expensive, no lead, purple and pink mats. Hopefully they arrive before next Friday, the scary day when I begin to day care for Henry, Mindy's baby. I know I am crazy but I want Leyla to have a friend around. It's just once a week. I think it will work. Hence the mats, so that they can roll around or whatever baby's do. I am soon to discover. I'll also needed them for Leyla's PT.

       Talking about buying. I have been shopping for a ticket to Spain. It looks like I will manage to make it between Thanks Giving and Christmas. I may scape the snow!

      What else happened this week? Oh, yes. we went to the doctor and found out that Leyla is almost sixteen pounds! No wonder my arms and thighs are so toned. She is doing well and we are just going to have her eyes checked. Something of a wondering eye.... 26 Oct.

    Early Intervention Therapy also started and once again the therapist was very impressed with Leyla's tone and state of development. She gave me some more exercises to gain more upper body control and we aim to get her sitting on her own, banging two toys together, rolling both sides continuously and probably something else in the next couple of months. 

   We have also finally joined the Flower City Association, the Rochester group for Down Syndrome and registered for the Buddy Walk. So now it is official, we are walking the mile in Awareness for Down Syndrome. Those of you who would like to join us please let me know and we can make arrangements. 

And the best of all, we have heard of a baby girl born with Down Syndrome in Rochester. She even shares Leyla's birth date! The therapist is going to try to hook us up. I hope it works.

The Flower City people said they know of a baby born in July so I hope we can all get together and start a little playgroup. It makes me feel better.

So. I keep painting smiles in my heart. 

For now, that is all.

As soon as I get some kind of "room of my own" again I will be able to post cool stuff. I can only do basic keep up now.

Stay tuned!

Love, Light and Laughter 

Rosa

365 project Video

This little video did wonders for me when we first heard of Leyla's T21. I thought I should share it.
Thanks to Dr. D. for the help in getting it here!

Oh happy days!

   Well, Leyla finally had her Early Intervention Program (EIP) evaluation done yesterday. At 5 months old I won't necessarily call it early. Obviously and thanksfully she didn't desperately needed it. We are SO lucky she is so healthy. My heart goes to all the families that have to overcome so many heart operations to start with. 

  Needless to say she did well and all the work I put into actually doing what the books recommend (Gross Motor and Fine Motor Skills for Children with Down Syndrome, Woodbine house)has paid off. 

As a matter of fact the comments we got from the evaluators, were kind of unbelievable. It appears that at this stage, and things may change any minute, she only qualifies for the program because of her diagnosis of DS, not because she shows any delay. In fact se would be at the top of typically developing children charts! 

I finally felt proud and my heart beat furiously in love once again. I realized it had stopped one gloomy day in May at a doctors office where my daughter was  left behind  as in the morgue. And at her side was left her mourning mother.

Well, my daughter, if not the one I dreamt of and thought I delivered, but the one with a little too much of either of her parents finally gets her emotional mother back. Not the one that just stoically do the job but the one that absolutely adores her and is prepared to stand by her at any cost, ready to have her heart torn open again and again, not because of the pain that her challenges will bring but because of the torrential Love that comes from the open heart of a Mother.

The lightness of heart that I have been so familiar with since my encountering with sufism is back. I have been chanting quite a bit lately. One of the things I have been praying for is meeting peers with Down Syndrome for Leyla. Today I have finally heard of a baby born with DS in July. I hope to be able to meet with the family soon. 

So it is Happy days anew. 

 And many more to come.

 

 

 

Well, I have finally done it. I have created a blog. I am not sure I can cope with all this tech but I will try.

Leyla, my sweet little daughter is the reason behind this new adventure.  I have no intention of writing politically correct stuff nor I will indulge in political discourse of any kind. I just simply would like to invite you all to share my journey into the unknown world of Down Syndrome and make you participate in my scary little voyage. Here I  will explore my fears, my hopes, expose the highlights of my new found humour, and make our Love contagious. More than anything this is an attempt to keep up with friends in both sides of the Atlantic as well as make some new ones.

 

So fasten your belts and enjoy the ride "Down the rabbit hole into Wonderland"