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Did you do it? Did you rock out with your socks out? Did you wear your crazy socks to raise awareness for World Down Syndrome Day?

I did not; I decided to wear my plain white socks, just like I do every day.

Why?

I was not thrilled with the idea of wearing such different attire that causes a person to stand out from another. I do love the idea of raising Down Syndrome Awareness but not this way. The Down syndrome community has always talked about and advocated for those blessed with Down syndrome to be treated just like everybody else, to be included rather than be excluded.

So what do we do, we have a day where we call attention to how different we are from others. How our socks make us stand out and create curious looks. Does this support the idea of inclusion or rather does it continue to show that those with Down syndrome stand out from others and deserve curious looks?

Last year we were more alike than different. We celebrated the success and belief that those with Down syndrome are just like you and me.

This year we take a huge step backwards and say….

“We are more different than alike”

Published in everyday life
Tuesday, 31 July 2012 19:12

Always protect her

“Are Carly and I always going to go to the same school?” Brady asked.

“Why?” I replied.

“Because I always want to be able to protect her!” Brady replied.

“Protect her from what?” I asked.

“From mean people.” Brady said

Two thoughts crossed my mind. Carly has a cool older brother who wants to make sure she is safe and sound each and every school day.  The second thought was he is right there are mean people out there who are going to want to pick on Carly each and every day.

How sad is it that there are people in the world who do not know how to act around someone with a disability so their natural reaction is to pick on them?  Because someone is just a bit different, it is okay to abuse them verbally abuse (or worse) them each and every day?

This is something that I will never understand.

I know it is not something that I can fix so it never happens to Carly, however; I am proud that Carly has a brother who wants to make sure he is there to protect her each and every day.

Published in everyday life
Thursday, 31 May 2012 17:37

Prom at the Packard Children's Hospital

More than 125 young patients and their guests are eagerly anticipating the longest-standing children's hospital prom in the Bay Area.

The Mysteries of the Deep theme begins this Friday night (June 1, 2012) at Lucile Packard Children's Hospital at Stanford, where hospital schoolteachers from the Palo Alto Unified School District are putting the final touches on this year's very special evening. Beyond providing an end-of-school rite of passage, the eighth annual prom offers a rare chance for teens and other patients, many of whom have life-threatening illnesses, to immerse themselves in an age-old, non-hospital experience—this year full of aquatic adventures and treasures.

"It's so important for these kids—some of whom will never go to their school prom—to have a night where they can forget they're in a hospital and just be kids," said teacher Kathy Ho, who leads the coordination of an event that gets bigger and more imaginative every year.

Mysteries of the Deep offers a transformative experience from the moment guests step into the hospital elevator—decked out entirely as an underwater submarine—and descend deep, deep down to the Ground Floor. The school captains have it all charted out. Emerging into a kelp forest, kids will admire schools of fish, jellyfish, and other sea life suspended from the ceiling as they pass through a coral reef and enter prom.

More than 100 volunteers and local businesses have worked tirelessly for months to make this night possible, including DreamWorks (providing much of the art design and decoration), Anthropologie, Selix Formal Wear, Symantec, Genentech, Weir Catering, Feet First Entertainment, Sugar Shack and many more. Because of their generosity, kids will enjoy shaking their fins to tunes spun by a live DJ, diving into delicious catches of the day, throwing their bait out on the casino table, and exploring underwater adventure games including Poseidon's Pearl, Shark Attack, and Tic Tac Tuna.

Anyone attending the hospital school over the past year is invited to bring a guest, including brothers and sisters who relocated to the area while their sibling received care. Even past-year prom goers are hooked, some flying in from as far as Hawaii and Arizona.

"It's amazing how many of our former patients and students are coming back to the hospital to volunteer at prom," marveled Kathy. "The older teens are making plans with the younger students, encircling them with a sense of community, and creating a haven for the sickest of kids. That's what it's all about."

Read more about Lucile Packard Children's Hospital at Stanford here.

Published in social
Monday, 13 February 2012 19:05

Using Music to Improve Social Reading Skills

 

Is my friend happy?



Is my brother sad?



Did I just make the grocery clerk angry?



To read these people's emotions, we need to look at their facial expressions, body language, and tone of voice and feel the tension in the air. It takes a combination of insights to accurately read how a person is feeling. Some children are really good at seeing how people feel and other children walk through life unconcerned about anyone else's emotions or feelings. Using music is a great way to practice social reading.



Music conveys emotions and feelings and we can make a game out of figuring out what the music is trying to tell us.



Does this song sound happy or sad?



Put on some music without lyrics and ask how the music makes you feel. Classical music is full of complex emotions and is a great place to start. Either simply listen to the music or have your child act as the conductor as you play the music. Explain that the conductor doesn't dance but helps the musicians know what emotions and feelings the music is conveying.



Just like our tone of speech tells if we are happy or sad, the key the music is written and played in tells if it is happy or sad. Major tones tend to be happy and carefree. Minor tones are often heard as sad and gloomy.



As you listen to the music, ask:

Is the music fast or slow?

Is it happy or sad?

Is it bouncy like a rabbit or flowing like an ice skater?

Is it loud or soft?

Is it peaceful or agitating?

Is it soothing like a lullaby or upbeat like a marching song?

How does the music make you feel?



Classical music is full of emotions, changing from one emotion to another and then back again. See if you and your child can follow these emotional changes.



In the beginning you should point out these feelings and then after some practice your child might start understanding and pick up on the emotions himself. Music is a great tool for teaching and practicing social reading. With some practice your child will be able to better understand the people around him.



Song ideas to start with:

Bach's Toccata in D Minor – written for the church but because of the minor tones we associate it with Halloween music

Haydn's Surprise Symphony – loud and soft and full of surprises!

Leopold Mozart's Toy Symphony- happy music for children- full of birds and cuckoo clock sounds

Handel's Minuet from Water Music – written for royalty, your child will want to get up and dance the Minuet

Rodeo by Aaron Copeland- very patriotic- your child will want to gallop like a horse

Vivaldi's The Four Seasons – Can you pick out the seasons by the music?

Beethoven's Moonlight Sonata -full of emotion

Published in education
Thursday, 05 January 2012 21:09

Kudos to Target!

Target ad featuring Ryan with Down syndromeDid you see it? On page 9? The one in the orange shirt... Right?

I saw it, but I truthfully nearly missed it (actually, it was the $1 socks that first piqued my interest) -- and I think that's the whole point. That's the beauty of Target's recent placement of a model who has Down syndrome in their Sunday ad.

Flipping through the ad circulars on Sunday, I almost didn't catch "it." After all, Ryan, the child model with DS, isn't wearing a "We're all special" tee-shirt, or even a sweatshirt promoting the R-Word Campaign. He's just a kid. With other kids. Wearing regular ol' clothes.

You can't get much more typical than that.

I have to commend Target for not only featuring a child with DS in their ad, but for the admirable way they did it: with out making a big deal about it. They didn't put a big arrow next to Ryan saying "Hey, look at Target! We're including kids with special needs! This week we're giving you a special ad filled with special clothing for special people!"

Nope. No bells, no whistles. I'd say that's inclusion at it's finest.

Here's hoping that they continue their wonderful effort in more ads to come -- and that other major organizations take heed and follow suit.

Target features a child model who had DS

Noah's Dad published a fantastic blog post about the ad: 5 Things Target Said Without Saying Anything At All. His words are witty, insightful, and definitely worth the read.

Jezebel, a Gawker Media blog, points out that Ryan was also recently featured in a Nordstrom advertisement. They also make a wonderful case that this type of advertising is win/win in their What Happens When A Kid With Down Syndrome Models For Target and Nordstrom post.

So... Did you see it?

Published in everyday life
Sunday, 06 November 2011 07:08

Future Homecoming Queen

Recently, my twitter feed and Facebook time line have been filled with news about high school students blessed with Down syndrome getting voted homecoming king/queen all over the country.  This increase in news has divided my mind in two different directions: a cynical approach and a rational approach.
My cynical mind thinks that the reason why we see an increase in Down syndrome homecoming kings and queens is that high school peers think it’s “cute” that the person with a disability has a onetime chance to be like one of the popular kids.  It is also a chance for the school to feel good about all the wonderful things they are doing to treat all kids like equals.  Trust me, I know this is a deeply cynical view and that is where my rational mind takes over.
My rational mind that knows that all kids -- especially teenagers -- are more alike than different.  It does not matter if they are special needs or not.  Teenagers will be teenagers; they will enjoy football games, hanging out with their peers, and running for homecoming king or queen.  I believe that their friends will not see their classmate as someone who just happens to have Down syndrome, rather they will see their friend who they think is fun, smart, and would be a perfect person to be homecoming king or queen.
Carly has taught me many things about life, that it is always best to wake up smiling, to laugh and love each and every day, and to slow down and enjoy the heck out of life.  As I get older, I am glad that my cynicism is disappearing, and I look forward to Carly having friends who think she is fun, smart, and think that she would be a perfect homecoming queen.
Published in everyday life
Wednesday, 02 November 2011 20:41

There's a Trick to This Treat

We had a such a fun time on Monday night, traipsing through part of our friendly town with our little costumed kids. I am so lucky to have lovely friends with well-behaved children, and family close by to join in on our celebrations. I'm not usually a fan of Halloween, but this year was easy and we all had a good time.

I couldn't help but remember years ago, a Halloween when Jack was just barely walking. He was probably three and still needed to have his hand held to walk more than a few feet, and he tired easily. He was too big for a stroller, but too small for the wheelchair that had been purchased for him to "grow into." Everything was hard. We had therapies every day of one kind or another, and fights with health insurance companies and job changes, and Jack was having a horrible time sleeping. I no longer worked in an office, and was trying to make sense of what free-lancing and working from home meant. Though we had become friends with a few couples in our new-ish neighborhood, we were the only ones in that circle with a child who had special needs, and the special needs program we were a part of was filled with people from all over the bay, none of whom were our neighbors.

We had recently gone through an especially rough couple of weeks, and it felt like we hadn't slept in many, many days. Five o'clock in the afternoon found me exhausted and craving adult conversation, actually, any conversation. As it got closer to dusk, when most kids were putting on their costumes, I had decided that it didn't matter if we went trick-or-treating or not. I was so tired, and Shawn wasn't home from work yet, and we had no invitations to join other families. We didn't know anyone, and I just decided that we didn't need to go out. It made me sad, and a little angry, then guilty, but I rationalized that Jack was little, he wouldn't miss it. And he is non-verbal, so he wasn't going to beg and plead like other children might. I was sort of just done being a mommy that day, and done feeling different and left-out.

My husband Shawn came home and wondered why we weren't ready to go. I started to list all the reasons why we shouldn't go, then all the reasons why it didn't matter if we went, while Shawn got our son dressed in his little green 'scrubs' which made Jack look like one of the bajillion doctors we had seen in the previous three years.

Shawn told me to grab a jacket and we got into the car. We drove just a couple of blocks, down the hill until we were in a nice flat spot with rows of houses. The streets were crowded with parents and children; mostly holding hands, some running ahead, having sprung loose from a grasp. It was a happy scene I didn't think we belonged in.

At the first house, Shawn walked up most of the driveway carrying Jack, then plopped him down on unsteady legs and held his hand as they toddled to the door. When the owners answered our knock,  the woman behind the screen-door brightened with a welcoming smile and a slew of compliments for my son who looked at her slyly from the corner of his eyes and smiled back. She couldn't stop talking about what a handsome young man Jack was, and chattered on, wondering if Jack was a surgeon or a pediatrician. She filled his small bucket and wished us well.

She hadn't noticed the bags under our eyes, or that my son couldn't lift up his treat bag to her reach. She had glossed over the fact that my sweet boy didn't shout "Trick-or-treat," or say "Thank you." What she had seen was a young couple with a beautiful boy, who was dressed up as a doctor. That's all we were. Another family in a stream of families with precious children who would visit her door that evening.

We walked to the next house each of us holding one of Jack's little hands, and made it through the rest of the block before Jack was too tired to walk any more. It was sweet, and that day ended with me being a much happier woman and mom.

***

Eight years later and our gaggle of friends the other night included five families with kids 13 months to 13 years, laughing and taking turns holding hands across the street. On Monday night we were one of those families that I had looked at longingly so many years ago.

I've figured out that most of the time, when I feel lonely or isolated, it's because I've separated myself from the support structures that are there, or pulled back from groups that in my case, have never actually excluded me. Being tired is a different battle, but engaging in the community is a choice I need to make; and every time I've put myself out there, it has paid off in friendship, new experiences, or fun, most of the time I get the "treat" of all three.

Published in everyday life
Dandelion is a free quarterly magazine that serves as a resource for Bay Area and Sacramento families of children with special needs: autism and Asperger’s, cerebral palsy, Down syndrome, those who are blind, deaf, in wheelchairs, learning disorders, sensory issues and every special need in between. Dandelion’s mission is to create and empower a community of local families through a variety of media by providing a database of resources, trusted and thought-provoking editorial content, an up-to-date calendar of special needs-specific events, noteworthy news, as well as contributions to the community.