Fashionisto

Here's my baby boy looking like a big boy and rockin' his new baby leggings that we won from Knotty Baby Wear on Down Syndrome New Mama's blog. Thank you again girls!



So darn cute! We've had a LOT of fun with them and Joaquin seems to really like them too. We love putting them on with onesies and Joaquin gets a ton of compliments on them!

Breaking Up

On the day of the Buddy Walk this year, I had the pleasure of walking with a friend of mine Gina and her 36 year old sister Renata who has DS. I had so much fun getting to know Renata better and we became fast friends. We even held hands for some of the walk and it was as natural as can be. She is such a sweet, dear person and is one of my personal heroes as she has overcome many health issues (unrelated to DS) and the fact that she had DS may have been one of the contributing factors to her ability to survive. More on that for another post.

During our walk, Gina asked Renata if she could share the story about her recent breakup with her boyfriend. She went on to tell me that Renata had had a boyfriend (who also had DS) for a couple of years (they worked together) and recently her heart was broken. Her boyfriend had broken up with her. And here is where you have a smile a little bit. Even Gina and Renata can laugh about it now. Her boyfriend broke up with her...not for another woman...but for a man!!!

Renata went on to say that yes her heart was broken but mostly that she was caught off guard by his announcement. She also said "I'm over him!" and said she wishes him well in his new love pursuits.

So...another example that yes, people with DS are more alike than different. Sounds like some good material for a Maury Povich episode to me!

Our Fragile Emissary

Our Fragile Emissary

With modern screening and such
they wonder why
you're here, on this earth
in our home
and in our arms,
after all, anyone
with any sense would have resolved
this problem of you
pre-birth, pre pain.

Blonde Beauty,
tiny as you are,
you catch their stares,
strangers' second glances
into tender baby blues.
And your young
sweet ears hear whisperings
("Down's," "defects")
words dropped loosely
at extra-chromosomed girls.

With such stinging receptions
how we long to shelter you,
surround you; keep your
gentle smiles to ourselves.
Instead, we hold you
up, for others to see;
let you, our fragile emissary
speak to an imperfect world.

Written by Nancy Tupper Ling

Palin on Oprah

Did anyone see it? Sarah Palin on the Oprah show? Thoughts?

Loved seeing Trig. Didn't love Oprah's line of questioning on Sarah's pregnancy with Trig. Didn't love Oprah's choice of words when talking about Trig's Down syndrome.

Politics aside, I would actually love to see more of the Palin family and Trig. They look like a really normal, healthy, happy family. Looks like Trig is getting really close to walking! Trig and Joaquin are really close in age so I will always have a fascination in following that cute little boy.

I just read on Yahoo News that Palin's appearance on Oprah's show received the highest ratings since 2007 when the Osmond's appeared on her show. Pretty interesting!

Chromosome Cake

Just this evening, Hector and I had a great opportunity to attend a Sibling Workshop led by two experts in the field of sibling relationships in families with special needs. Dr. Brian Skotko and Sue Levine led the workshop and I feel so lucky that DSIA flew them out to Sacramento to speak with a small group of us. Diego was able to attend the breakout session for children ages 5-8 and then childcare was provided while Hector and I attended the parent session.

It was so informative and Diego also really enjoyed having his session with some peers experiencing the same thing he is. I think Sue validated the kids feelings no matter what they were and helped them to process having a sibling with DS. The kids expressed their feelings and also shared advice to their parents. It was really eye opening to see the things they said on their brainstorming papers. Things like "Pay attention to us too" and "Let the baby rest sometimes" and "Be fair" and "Have a baby with DS". This last one Sue and Brian mentioned is really interesting. They have collectively been doing this type of thing for 35 years and they said in the last 5 years more and more often kids (and really young ones) are talking about prenatal decisions and choices. So when the kids said "Have a baby with DS", they meant that they feel babies with DS are wonderful and they want them in their lives. Interesting!

One of the best tidbits of the night was a tip on how to explain how or why an extra chromosome can make such a difference in people. Sue mentioned this "recipe" was one way a mom in one of her previous sessions explains it so that even young kids can understand....

Chromosomes are ingredients that make us who we are and it's like the ingredients in a cake. All cakes are made with flour, sugar, eggs, some vanilla and some oil in our cake batter and we bake it in the oven and out comes a yummy, delicious cake. Having an extra chromosome is like adding in an extra egg or maybe a little extra oil. You still get a yummy, delicious cake but this cake might be a little softer, spongier or stickier but it's still a yummy delicious cake.

I thought this was a GREAT way to explain it...not to mention it kicked in my sweet tooth!

Thank you Sue and Dan for an awesome afternoon and thank you DSIA for hosting them.

Words From The Wise

I found this note on a Yahoo Group that I belong to and I thought it would be great to share. Rick Dills is a father of a 36 year old daughter with DS. This is his advice when thinking about your child's educational plan.

Here are his words:

My attitude is to step back and let the combination of your child and the education system work. I don't think that it matters whether a child is in a special program, mainstreamed, or included provided that the teachers really want your child and get significant personal satisfaction from her/his success.

There is much more to life than academics or inclusive (age appropriate) social contacts.

Yes, many of the "poster children" had immense resources spent on them. Most were already among the elite with DS in that they had much more than average capability and have achieved in specific, but important areas. Each of our children is different and each is valuable whether they are "poster children" or perhaps more handicapped from the beginning than Karen Gaffney. WE ARE NOT INTO COMPETITIVE CHILD RAISING !!!!

My observation is that satisfactory adult outcomes do not correlate with how hard you have pushed your child, but rather on how you have taught them to be proud of who they are. Setting the bar too high prepares both parents and the child for failure.

If you have lots of money, you can spend it on your child in elementary school. I would recommend saving for potential post-high school training to help your child (whatever level she/he is at) to live as independent and happy a life as they can. It is just like normal kids. Private schools are OK if you have lots of money, but if that means you don't have enough for college, you have made a big mistake.

Remember that you have a life and is isn't just taking care of your handicapped daughter. My wife and I decided from the beginning not to let this be the end of our personal lives and development. Over the years I had a remarkable career, but I did find extra time for the things Jan needed. My wife went to med school when Jan was 10. The payback for that was that when Jan went through her awful life threatening years, her Mom was there and trained to help. There were times when Jan would have died, had it not been for Mom's intervention in her care.

We raised our child with the expectation that she would go on to her own life as an adult. That is where she is today and that is where most of her peers are. The few who are "poster children/adults" are doing just fine in their 30's, but so are those who simply had ordinary caring parents who didn't have the resources to make their child a public example.

See that your child is happy and developing, even if more slowly than those without Down syndrome. See that they are praised
enough to be proud of themselves. Put your energy into the places where you can provide something that the school and other programs cannot. We included Jan intensively in our lives, hiking, swimming, skiing, and in just doing the same chores her brothers had. I stepped in when programs weren't available such as being her coach in Special Olympics when there wouldn't have been a program if I didn't.

Work WITH the people whose job is to train and support your child in a teamwork fashion and not in a confrontational one. We had a major blow-out in Jan's care in the past week. It will be taken care of because there is no blame, but rather a need for different handling in the future. Mistakes happen, but you don't have to get mad.

Yes, some people won't appreciate your child when they should. Try to fix that or if necessary withdraw your child. I always felt that Jan was a gift to the world. If you didn't want that gift for some reason, you were not entitled to have it. It is the other person's loss and not Jan's.

Rick ... dad to 36 year old Jan who does have Down syndrome and is an
individual, just as your child is!

The Episode of Glee

I have never watched the show before but I got a tip on Facebook to watch it this week.

I would love to hear how the DS community felt about the show. I found it touching at times and "touchy" at times. I'm still processing it.

For those not familiar, Glee is a popular musical sitcom on Wednesday nights on FOX around 9pm. The episode this week included two actresses with DS. One portrayed a cute, bubbly high school student trying out for the "Cheerio's" and the other portrayed an older, nursing home bound sister of one of the main characters on the show.

I would love to hear people's thoughts about the episode. I was surprised that there wasn't much blogging activity on the subject. I think we all might be too busy to watch much TV but if you did get a chance to see it, please share your feelings!

Apparently, the actresses will appear again in upcoming episodes as their story line is not complete yet. I look forward to watching it.

Here's a link to the full episode. You can even watch it online.

"Wheels"

One Lucky Baby

Joaquin is one photographed baby, let me tell you. We had the pleasure of meeting a new friend and mom of a child with DS last weekend, Michelle Slape. She is a photographer in a nearby city and she is considering specializing in special needs children. For DS Awareness Month she offered a free sitting for families with a child with Down syndrome. We took her up on her offer because...well...I just didn't think we had enough photos of Joaquin. Hahahaha!!!

Anyway, I'm glad we did it. One...Michelle is adorable, talented and she is a mom of two sweet boys...one who happens to have DS and the world's most infectious grin. His name is Cody and I can't wait to meet him next time. Two...it's fun to see different photography styles and to help inspire a possible career direction. I hit it off with Michelle the moment I met her and I hope we can get together again with our kids sometime soon.

Here is her latest blog entry. Enjoy! And THANK YOU Michelle for a wonderful morning and some beautiful photos. I can't wait to see the rest of them!

MRS Photography "My Heart Has Been Touched"

Teachable Moment

I was chatting with a new friend at the park today and the subject of Joaquin and DS eventually came up. She said she wasn't sure that Joaquin had DS because he seemed so happy. She said that she thought all kids and babies with DS were usually sad and lacked emotion. This was her vision of DS and she said that Joaquin didn't fit that vision.

I was kinda stumped. I thought the misconception was the opposite but it goes to show you that the misconceptions are all over the map. I responded by saying that typically people assume that kids with DS are always happy and reassured her that Joaquin has all sorts of emotions and that he can be sad at times too. I told her that maybe she was mixing up low muscle tone in the face with being a sad, emotionless face. I'm thinking that maybe her vision of the typical open mouth face with the relaxed tongue is what she was referring to. I tried to explain that children with DS are just like any other child. I think it made sense to her...I hope. I hope it was a learning moment for her.

I hope to never pass judgement on people's misconceptions. I hope always to be kind, informative and open when chatting with people about DS. I want to be an advocate not an adversary.

HAPPY HALLOWEEN 2009

May the FORCE be with you this Halloween!

P.S. We won Hector's Employee Halloween Photo Contest with this picture...a $100 VISA card! Woo Hoo!