Saturday, October 31, 2009

Is that James Dean, or...?

Yesterday was Greta's preschool's Halloween Party.
Greta was a cowgirl and John Michael was James Dean, minus the cigarette.
I'd originally planned to dress him as a cuddly teddy bear, but when I stumbled upon this faux leather jacket for $2 while searching for Halloween dress-up stuff for Nic and Anna at Goodwill, I couldn't resist!

I love how the light and shadows play upon his sweet face.

Whenever I ask John Michael to smile, this is the face he gives me.

He loves taking Greta to preschool. There are always fun, tactile things to play with.

Greta and her friends had fun hammering golf tees into a pumpkin.

I wonder what the pumpkin looked like at the end of the day :-)

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Wednesday, October 28, 2009

Clip of John Michael playing piano

I just missed it... John Michael said "Mama" two times just as I started recording.

What I love is how he mixes up the sounds, changes the tempo and dynamics to suit his mood. And he really listens to the notes as he ascends the scale with his sweet, chubby little fingers. Music has been one of the greatest gifts to our family and a common language we all speak. Words are not necessary...

Monday, October 26, 2009

John Michael's Friends "Stepped Up" for Down Syndrome

Yesterday's "Step Up for Down Syndrome" walk was wonderful! The weather was perfect and we had a great turnout of almost 40 walking alongside our family.

Totally appropriate for the occasion, John Michael spent a lot of time "steppin' up" and walking on his own. He got to about 16 steps and was enjoying interacting with people.
He especially loves his Oma (Doug's mom). I love this photo of them walking slowly hand-in-hand.

Greta and her BFF holding up a poster made by the NDSC.

Many of Nic and Anna's classmates and their siblings joined us. It was great to see so many tweens and teens at the event. Thanks to Joanne for making posters. The one on the right says, "John Michael, You are something to crow about." It cracked me up because John Michael makes the funniest rooster sound.

Here's our team. John Michael rode in style in the wagon, waving a flag.

We couldn't pass up a quick photo op with his little buddies. Look how our group is growing! Gracie, Joaquin, John Michael, Gabby, Joey and Sheridan are some of the luckiest kids to be growing up together.

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Thursday, October 22, 2009



Now what?

I'm guessing that look on Mom's face means get down...

I think I'll just walk away and be cute... She can't be mad at for me for long.
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Tuesday, October 20, 2009

My Poster Boy for the More Alike Than Different Campaign

I love this! It came just in time for our Step Up for Down Syndrome walk this coming Sunday, October 25th. Maybe I can get some posters printed in time...

The NDSC is offering this fun, free service to anyone who submits a photo of their child or an adult with Down syndrome and a short blurb on something that they like to do or some special talent they have.

This was a no-brainer for me. While John Michael loves to do many things, his first and foremost all-time favorite activity is to make music, sing and dance. This boy has music in his soul.

While music is in his genes, I like to think that some of his musical interest developed while I was pregnant with him. I was 4 1/2 months pregnant when I toured with my vocal group, RSVP (Reconciliation Singers Voices of Peace) to Houma, New Orleans and Slidell, Louisiana, the summer of 2007. That boy lived and breathed and developed while listening to some gorgeous vocal music as well as instrumental sounds from the United Nations Youth Symphony, all the while uplifting victims of Hurricane Katrina.

If you'd like to have NDSC make a poster for your child, here's the link
It takes a few weeks for them to get it back to you.

Thursday, October 15, 2009

My talk to 7th Graders about Down syndrome

This past Tuesday, I went to Nic's 7th grade class to speak about Down syndrome. The purpose for my visit, was to prepare those 7th graders who are participating on John Michael's team in the Step Up for Down Syndrome Walk coming up on October 25th.

It was an easy audience to do my inaugural talk on Ds. They all love John Michael, who was in the classroom with us, but none have ever asked anything about him or Down syndrome.

I only had about 25 minutes to speak before the end of the school day, so I opened up by talking a little about what Down syndrome was and how the extra chromosome affects John Michael physicially as well as his ability to learn, that it's not a disease that you can catch and it can't be cured. I showed them a quick PowerPoint slide show that I made up with some Ds facts and photos of John Michael.

Once I had them hooked into the topic, I spoke about the R word. I acknowledged that everyone in the room, at one time in their lives, has probably said the R word to mean something was stupid or dumb. I told them that the R word is like hate speech to people with intellectual disabilities and that we need to replace the R word with the word Respect. When you use the R word around people with intellectual disabilities, it is a cowardly act, because their feelings will be very hurt, but they probably won't fight back. I don't know if they ever thought about the R word and John Michael at the same time, but I asked them to think about him if they were ever tempted to say the word. I then showed them 2 short PSAs about the R word. They really liked that.

The Arc "Respect" PSA

End the R-Word

Finally, I wanted to talk to them about the many different faces they'll see at the Walk. I told them that it's OK if seeing older children and adults with Ds makes them uncomfortable. Acknowledge and accept the fact that you're uncomfortable, but resist the urge to make fun of people just because they look or act differently than you. If someone with Ds approaches them at the Walk, I suggested the best thing to do is smile and say 'hi' and realize that they are more like you than different.

At the end, I showed a 4 1/2 minute video essay called "Difference is an Artist's Game" presented by an 8th grade girl who has a younger brother with Down syndrome. This is a very powerful video and she asks some very deep, pointed questions of the young audience. She relates her brother to a Picasso painting. It's very beautiful and moving.

Difference is an Artist’s Game. Must see!

We didn't have time for questions and answers as this brought us up to the very last minute. I even had 2 more PSAs to show and couldn't get to them. I could have easily spoken and shared with them another 10 to 15 minutes if we'd had the time. The room was silent throughout the talk. Afterwards, several came up to me thanking me and some told me they really wanted to do the Walk. So far, we have 8 families registered from Nic's class, bringing our team total to over 25.

The links below are also excellent and I didn't get to show them. That evening, the 3rd grade teacher whose classroom we had used for the Smart Board, asked if I could come talk to her class, too. She was very moved by the talk. Yes! I would love to!

More Alike Than Different


Wednesday, October 14, 2009

Wordless Wednesday -- Dancing Like the Stars

John Michael this morning... he LOVES this toy.
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Greta and John Michael dancing like the stars...

Who wouldn't want to dance to music like that?

Tuesday, October 13, 2009

Some cool PSAs and a video essay on Ds

I'm preparing a short talk on Down syndrome for Nic's 7th grade class this afternoon and have compiled a few PSAs and a beautiful video essay from a sister to a boy with Ds.

Difference is an Artist’s Game. Must see!

More Alike Than Different


End the R-Word

The Arc "Respect" PSA

Slideshare show on T21:

Wednesday, October 7, 2009

Wordless Wednesday -- My Piano Man

John Michael could easily sit and play piano for 30 minutes at a time. He loves it! It's great for his fine motor skills as he's tinkering on the black keys. It's also great for his concentration and listening skills. He loves mixing up the sounds going from pianissimo to forte and from dolce to pesante. Adding to the fun is John Michael swaying to his music and singing along. I think we just might have the beginnings of a music maestro.
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Tuesday, October 6, 2009

What do you see?

What do you see?

I see a beautiful boy, who is full of love in its purest form, sitting contentedly with his Opa (my dad), who's originally from Germany. I used to be afraid of the diagnosis of Down syndrome. I didn't want my child to be different from his three older siblings. What I didn't know then, and what I know now, is that he is not a diagnosis. Not even close. Yes, he has some of the characteristics of someone with Down syndrome, but he is first a brother, a son, a grandson, and a great grandson (to Granny in Holland) and an all-around important member of this family and our community.

My parents were here this weekend for the Oktoberfest and my birthday. John Michael couldn't get enough of kissing his Opa. When they arrived on Friday for Kaffee und Kuchen (coffee and cake), he recognized him right away and when we asked him to say, "Opa," he said "Ah-pa!" And not just one time, either. That was very cool!

I found this link, below, at the NDSC website. It might take a moment to open, but it's worth it.

What do you see? I only see beautiful faces.

Thursday, October 1, 2009

Thankful Thursday

(Here's our family at a beautiful wedding a couple weeks ago)


I just can't get over this thought...

There are so many wonderful people that have come into our lives this past year.

I'm in AWE! And so thankful!

All it took was for one little boy to be born at the right time in history, to the right family, in the right order, with a particular extra chromosome in the right place.


I am thankful to my incredible family, all the people who read my blog, and to those whom I've met in person, or through blogging, Facebook, and the NDSC Convention in Sacramento this past July.

Thanks for being there for me! The journey is so much sweeter with friends in all the right places.


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