Wednesday, August 26, 2009

ArtBeast!

We took the morning off from all chores and therapies and headed to midtown to check out ArtBeast Studio on the recommendations of three friends.

John Michael and Greta had a blast. Within seconds of letting John Michael try his hand at painting (I'm bummed I didn't get a photo), he grabbed the white paint loaded brush from my hand and put it in his mouth. If I didn't have to go wash out his white tongue and lips, I would've snapped a photo. He reminded me of some tribal boy or an old-fashioned black and white film actor.

Abandoning the art room for John Michael until he's a little older, we went out back to the shady courtyard. He quickly decided to (literally) try the sand and rocks. The next photo shows him trying to scrape sand off his tongue.


ArtBeast Studio is a dynamic, super-fun, new hands-on art exploratorium for children 6 and under. It is located in an old wooden house, maybe from the 1920's?, and boasts three stories of activities to encourage creativity, including music, pretend play, puppet theatre, a stage for the "actors", doll house loft and kitchen play area, art and craft tables with clay, paper, collage, paint, etc., upstairs dance studio with tumble mats for infants and a separate room for toddlers & preschoolers, and an outdoor courtyard for more water play to wash babies, scoop sand and gravel, and to bang these old pots and pans as loud as their heart's desire.


John Michael LOVED banging on the huge drum. I'm pretty sure he'll be a drummer some day! The metal structure behind him is made up of aluminum tubing, dryer hoses, large tomato sauce cans and other aluminum objects to make a cool hideout.

Greta loved playing the guitar and performing on the stage. I couldn't believe how much fun it was! We stayed 2 hours, left for lunch at a nearby restaurant, and returned for another round of play for Greta while John Michael napped in my arms.

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Monday, August 24, 2009

i did it

Our local blogging friend, Jennifer of Three's a Charm, came up with a brilliant idea. She made up these darling t-shirts that say "i did it" which have become our mantra for everything new John Michael is doing. For each t-shirt purchased, Jennifer will donate the book Gifts 2, to which she's a contributing author, to a local hospital or pediatrician or genetic counselor's office. What a positive way to spread the news that children with Down syndrome are more like typical kids than different. To learn more about the "i did it" project, click here.

Below is our recent list of "i did it's"...


i did it #1: John Michael climbed into my rocking chair using a footstool. He has been working hard on this skill for a long time now and last week, he did it! When he gets in, he carefully turns forward and begins to rock back and forth. The look on his face is too funny.

i did it #2: John Michael (and his family) makes friends. Here's John Michael with our local blogging friend, Jennifer's, "i did it" twin, Joaquin. Through blogging this past year and the NDSC Convention last month, we've met some wonderful families and all because of an extra chromosome, the connections are very deep. I'm amazed at how John Michael and his little friends with Ds seem to bring the best out of all of us. Yes, that's the T21 Traveling Afghan on their laps. :-)

i did it #3: John Michael loves to go to the park and swing. He's starting to go down slides, too. When I ask him to "swing", he rocks the swing back and forth. His receptive language skills are really good.

i did it #4: John Michael can climb into his music therapist's box chair, turn around and sit forward all on his own now. He's been working on that for a long time. Before, he was able to stand up and climb onto the chair, but couldn't figure out how to turn around and sit forward. Last week, he did it!

i did it #5: John Michael can blow into a harmonica and make sounds. This is a difficult skill to learn. He's been vocalizing into a kazoo for a long time (over a year) and recently started blowing air into a recorder. The harmonica takes a lot more forced air to make a sound. Last week, he did it!

i did it #6: John Michael plays well independently. He loves to pull out his xylophone and play either with the attached mallet or with two drumsticks. Last week he started really paying attention to the different sounds the keys make and play different sounds, e.g., striking the red and then the dark blue to hear the contrast in sounds. I'm so proud of this "i did it".

While I could go on about his cognitive and motor skills growth spurt, I think you get the point. John Michael seemed to be at a standstill for a couple months, even retreating backwards in verbalizations while his gross motor skills were in the forefront. I guess that's pretty common. These past 2 weeks, all of a sudden, it seemed like a lightbulb lit up in his brain and he's doing so many wonderful new things. Even some not wonderful things... like climbing up onto a chair and then onto a table and sitting there. OK, it's a wonderful motor skill, but not great for safety purposes.

I have some cute videos to go with the post, but I've been so behind lately that I wanted to share this. Cheers!

Wednesday, August 19, 2009

T21 Traveling Afghan! + John Michael and Joaquin "did it"

Today was our day to pass on the love of the T21 Traveling Afghan to our local blogging buddies, Jennifer of Three's a Charm and her precious Joaquin.
If you don't know about this project, click the link above. It's an afghan that is traveling the world (literally!) to be shared by families who have a child with Down syndrome. It's like the tie that binds us together -- one family at a time. We are honored to have been a part of this and look forward to hearing the many adventures of the afghan for years to come.


We had the afghan for 10 days and it was very loved in our home. Mostly, John Michael cuddled with the afghan during naps and bedtime, but it also found its way on our living room floor to play hide and seek and offer cuddles while he was teething last week.

I have to say, CJ did a beautiful job crocheting this afghan. It's very cozy and durable, which is great since it has so many more families to touch and be touched by.

There is a journal that travels along with the afghan. It's so cool to read what others have written before us and to recognize some familiar bloggers who share this connection with us. Here's what I wrote. I also attached some photos.


Joaquin is now the lucky recipient of the T21 Traveling Afghan.
Doesn't he look like he's happy to have it?

Finally, we didn't plan this, REALLY, but John Michael and Joaquin are both sporting their "i did it" shirts. I'll post about JM's "i did it" separately, but what a great photo op to get our cute boys together with their shirts AND the T21 Traveling Afghan. LOVE IT!

You can jump on the "i did it" bandwagon over at this post: Three's A Charm. The t-shirts, designed by Jennifer, are $21 (for Trisomy 21) and for each shirt sold, she will donate a copy of the book, Gifts 2, to a local hospital, genetic counselor's office or pediatrician's office. I think pregnancy counseling centers and OB offices would be great, too.

How awesome is that?

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Sunday, August 16, 2009

Good-byes -- Army relocation

This post is dedicated to my husband's brother, US Army Capt. John Paul Crumley and his wife, Dana, and my darling nephew, Cole.

John served in Iraq for 15 months until one month ago when he finally returned home safely. It was a long and difficult journey for Dana and Cole, but also for John, who missed so many of his son's many "firsts" while he was away. Cole is now 2 1/2.


The family is going to be spending at least until April 2010 at Fort Leonard Wood army base in St. Robert, Missouri for John Paul's captain training program. Church friends of ours who are also an Army family tell us that St. Roberts is a very family-friendly base, so we hope their experience is positive and that Cole transitions into his new home easily.


While John was serving in Iraq, Dana and Cole moved from their previous home in Germany to live close to us and my mother-in-law. It's been very nice getting to know Dana better and watching Cole grow from a 14 month old babbling toddler to a walking/running/bike-riding/swimming/talking active little guy. My Greta will surely miss him the most. At 4 years old, she was like the big sister to him and they became good buddies fast. She also enjoyed bossing him around and he usually followed her lead.


(John Michael taking a dip with his Uncle John Paul)


And for all the military men and women who serve this country, I want to give a big, heartfelt thank you for your sacrifice. I saw firsthand how difficult it can be on families and yet you make the choice to serve selflessly. We'll miss you guys. Love you lots!

Tuesday, August 11, 2009

John Michael's eye appt & Brushfield Spots

Today was John Michael's 2nd eye exam with his pediatric ophthalmologist, Dr. Satterfield. She also specializes in strabismus, or crossed eyes, which John Michael doesn't have, but if you have questions about it, she has a website. www.satterfieldmd.com

Thankfully, the visit was quick and efficient and John Michael cooperated very well to the different lights and lenses flashed before his eyes.
She noted that he still has a slight astigmatism in one eye, but it is milder than last year. So, although he may need glasses at some point in his life as do many children with Down syndrome, his vision is great and he won't need to visit her for two years. Hurray!

I've always been struck by John Michael's eyes. Last year at our first eye appointment, I learned that John Michael has Brushfield Spots. I'd first heard of them in Jennifer Graf Groneberg's book Road Map to Holland.

From Wikipedia, "Brushfield spots are small white or grayish/brown spots on the periphery of the iris in the human eye due to aggregation of connective tissue, a normal iris element. These spots are normal in children but are also a feature of the chromosomal disorder Down syndrome. They occur in 35-78% of newborn infants with Down syndrome.[1] They are much more likely to occur in Down syndrome children of the Caucasian race than children of Asian heritage.[2] Brushfield spots are named after the physician, Thomas Brushfield, who first described them in his 1924 M.D. thesis.[3]"

I was looking at the sources used to come up with this short definition. Source #3 comes from Hugh R.E. Wallis' The Significance of Brushfield's Spots in the Diagnosis of Mongolism in Infancy, 1951. There's that word... "Mongolism." Man, that bugs me! Every now and then I still hear the word Mongoloid. That's another word that needs to go.

I even read that Dr. Down himself classified our children as "Mongoloid Idiots". If he were still alive, I think the Down syndrome community would have something to say about that! We'd be sending emails, calling and correcting him. If he could just see our children and adults with Down syndrome now, he'd be amazed at how far they've come... and he'd be busy doing a whole bunch of re-writing!

This photo, above, is one of my favorites taken recently at the water spray park that really show off John Michael's Brushfield Spots. There are so many wonderfully unique things about John Michael, but his eyes truly transport me sometimes to another place. A beautiful, peaceful place. I call it heaven.

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Sunday, August 9, 2009

Guess who has the T21 Traveling Afghan now...

Could it really be the official T21 Traveling Afghan? You bet!


Our little buddy, Sheridan, and his mom, Lisa, brought the official T21 Traveling Afghan to our house last Friday for a playdate. We didn't actually get to keep it over the weekend, but I wanted to include pics. Lisa officially handed over the afghan to us today at the park.

Not actually being able to open a box that came in the mail, John Michael, upon seeing the blanket for the first time, put his head right down on it and cuddled up with it...


then paused to examine it a bit closer. I'm guessing he really likes the muted color scheme and the stitches :-)



Knowing that this afghan has already traveled to many states and has been loved by many of our blogging friends and their chromosomally enhanced children is a wonderful feeling. And knowing that this very same afghan will be loved by more children in the rest of the states and other countries as well is amazing. A lasting connection being made, like a spider building her web one strand at a time.


John Michael is going to have some great cuddles with this afghan as we patiently wait for CJ to finish our own afghan.



Today at the park we officially received the afghan to take home for a week! I hope you don't miss it too much, Sheridan! I'll post some more photos when John Michael is alone with the blanket. :-)



John Michael also made a new friend today. Jase is 10 months old and son to another Lisa. I met Lisa at the mom's sharing session at the NDSC Conference last weekend. Her little guy is such a cutie! John Michael, at the ripe age of almost 21 months, is going to teach him all kinds of new stuff!



Even Jase got to hang out with the afghan for a little while in the park today :-)


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Friday, August 7, 2009

John Michael can Boogie!

video

Older siblings are great for teaching the younger ones how to do fun things.

Two days ago, Anna taught John Michael how to dance and move to music. He's even starting to sway to electronic music books on his own. Very cute!

I hope this puts a smile on your face. It sure does mine!

Wednesday, August 5, 2009

NDSC Final Day

4 little cutie pies on the final day... Joey (sorry, I cut you off!), Brennan in the back, Joaquin and John Michael.

John Michael kept bolting... it's like he's saying "No more pictures, I have other things to do..."



Cori holding Joey, Me holding John Michael, Sharon holding Brennan, and Jennifer holding Joaquin.

Nicolas (2nd from left) had an excellent time at the Brothers/Sisters segment of the NDSC Convention.
Even though we all live in other parts of the country, these are friendships that will last a lifetime because of a common bond. It's awesome to see these young people chatting with older teens and young adults who have Down syndrome. At the dinner, Greta danced with a boy who has Ds and Anna had a nice conversation with a self-advocate and his fiancee sitting at our dinner table. Awesome!
Next year we're in Orlando (think positive!) Well, at least I'm hoping to make it!
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Saturday, August 1, 2009

NDSC Convention Update

All talk and no play is no fun...
John Michael taking a break in the play area.
John Michael with Brad Hennefer (Golf for Life). Brad's an accomplished athlete and helps teach golf to kids with Down syndrome. If we lived closer, Brad, we'd definitely sign up!

Me with Kathryn Lynard Soper. She's soooo nice in person -- don't let her Teletubby persona fool you :-) We had a nice chat after the birth to 2 year old sharing session for moms. I also enjoyed sitting in on Kathryn's talk today on Sharing your Gifts.

Today we had lunch with about 11 other DS Bloggers and their families! That was excellent! But, wouldn't you know it, I didn't get a photo. Jennifer from Three's a Charm took a photo, so hopefully she'll post that.

It's been amazing to see all these faces with Down syndrome and the people who love them. Nicolas is participating in the sibling workshop and made friends within the first minute of walking in the room on Friday. These guys are so great -- they all range from 11 to 12, 6th to 7th grade. I so wish they all lived here so Nic would have them as regular friends. What a difference that would make to have a friend who shares something unique in life. It's awesome that his friends just come up to John Michael to give high fives, shake hands, to hold him or hug him or tell me he's awesome. (I know I've overused the word "awesome" but that's how it feels.) Some adults with Ds or older children w/ Ds have come up to John Michael and said hello. JM's face lights up, as does theirs, and I sense a deeper connection than what I can comprehend. Ben and Alex's mom from Colorado told me that Alex (Ds), who's only 7, can tell who has Ds and who doesn't. She said she's never actually told him what features to look for, but she thinks he senses something as well. Interesting...
Anna chatted with an adult w/ Ds at dinner and Greta danced with a 7 year old boy with Ds. The girls are having a fun time, too, although they spent most of the day at a nearby friend's house. I'm so proud of my girls!

Tomorrow is the final day. It will be bittersweet, as is the end of anything great. I've made some great new friends and look forward to keeping in touch and watching our children grow via blogs and Facebook.

On a final note, but definitely not last on my mind, Gabby did well in her heart surgery in San Francisco. Thank you for your thoughts and prayers for the family! I know it means a lot to them!