Our Trip to Chicago

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Doing my part

As part of World Down Sydrome Day I decided to volunteer diversity and inclusion units at Marble School. Over the next 2 weeks I will visit 6 classrooms. I know that I am best suited for the university classroom but WOW did I enjoy working with the third graders. They were so interested and so engaged! Yesterday I met with Ms. Daley's third grade class and I talked with the students about what makes all of us unique. I divided the students into pairs (except one group had three!) and they talked to each other about what makes them unique. When we came together as a group each student had a chance to say something about themselves and during the discussion we discovered that we would rather be called unique than "different." Then we looked at a chart of the 23 chromosomes and we talked about how chromosomes function and we noticed that they kind of look like worms. I explained that Joe has an extra chromosome on the 21st pair (I drew it in) and we talked about what that might mean for his health, his development, and other aspects of his life. The students were very interested and they particularly liked learning the term trisomy 21 and practicing it with other chromosomes (trisomy 7, trisomy 12, etc). They were interested to know if it was a good or bad thing that Joe has an extra chromosome. I said it was neither, it was just a thing, just what happened. One student said, "Hey, our class is sort of like Down Syndrome! You asked us to divide into pairs but it just happened that we had a group of three!" (I was hoping someone would notice that). I said, "Was that a good thing of a bad thing?" They said, "Just a thing."

I also told them that sometimes my feelings are hurt when other adults stare at Joe, or ask me what is wrong with him, or don't want to talk to him. When I asked if they could make suggestions about what I should say to them they said: "That is bullying! Just say that he has trisomy 21! Say nothing is wrong, he just isn't talking yet! You can report them to Ms. Preston (the principle)." Finally someone said, "Just say he is UNIQUE!"

Class dismissed.

World Down Syndrome Day!

Today is World Down Syndrome Day: 3.21. = 3 chromosomes on the 21st pair. I am posting a photo of Joe at six months that I found as I have been looking through the pictures of the past four years. Unfortunately all of his birth photos were taken before Tutu & Papou gave us a digital camera!

Easter Photos

We went to the MSU butterfly house to take our annual Easter photo. Besides Joe & I being locked out in the cold of half an hour when Joe went to use the potty, and then Joe spilling the butterfly juice all over the front of his outfit, and Emma being deeply disappointed that she wasn't able to hold more than one butterfly....if was a fun visit. Here are some of the photos taken today. We are saving the best photo for our card.

Bedtime

Cookies

Joe & Emma made alphabet cookies after a 1/2 day of school. Here they are pursuing their artistic talents by painting on the frosting.

Sunny Day

Emma & Jelimo enjoyed the unseasonably warm weather last week.

Mr. Dry Pants

It's a big party at our house now that we are on Day #2 of Joe being dry in big boy pants (except for that one incident this morning...that doesn't really count).

"Lost Tomb": Why the Fuss?

Chris wrote an Op Ed in the Orlando Sentinel on the "Lost Tomb" documentary that aired last Sunday. Click HERE to read his insightful comments!

Rollerskating

On Saturday we went roller skating with Mike, Stacy, Daniel, Molly and baby Charlie. Emma and Joe loved it! They both fell a number of times but they kept getting back up and by the time we left they were both skating without holding on to a parent's hand or the rail! Emma was very pleased by her progress and Joe continues to surprise us. Who knew he would learn to roller skate in a few minutes? Wow.

Look at Joe go!

Joe the rolling wonder

Emma finding her balance

Daniel & Emma

Joe & Molly

R.I.P. Spotty

Sad news from our household. After less than a week, Spotty Lucky DeRogatis-Frilingos was discovered floating aimlessly behind the faux grass on the left side of the goldfish bowl. Emma was very sad and announced (despite evidence to the contrary) that "Spotty was my most lucky fish!" We gave Spotty a traditional goldfish burial at sea (you know what I mean) and now we are down to two. Emma has changed Ariel's name to Lucky because it is a gender neutral name and who can really tell with goldfish? In her words, "it's both a girl and boy name and that seems right because I think the brown spot on the tail means he is a boy, but who knows?" So now we have Speedy and Lucky who seem to be enjoying the extra space in the bowl. Also, Emma is no longer eating fish sticks.

B & N Event

Amy reading "We'll Paint the Octopus Red."

Eva

What is Joe doing?

Emma & Julia

Joe & Bennet

Joe and Bennet

We had a good time at the Barnes & Noble event this afternoon. Emma's friends Julia, Grace, and Kelsey came with their families. We also met some new people (including Eva in the picture). I read the book "We'll Paint the Octopus Red" and the kids colored octopus pictures and ate cupcakes and cookies. Overall, it was a fun afternoon.

Snowy Day

Emma & Joe were home from school again today. We made rice krispie treats, visited the public library, played hide-&-seek, and finally I agreed to go with them outside to play in the snow. It took us about 15 minutes to put on snow pants, boots, hats, mittens (it is so aggravating trying to get Joe's little thumbs into mittens!), coats and scarves. Joe was outside less than two minutes when he put his boot in the snow and said, "Oh no, no, no!" We asked him if he wanted to sled, he answered, "no, thank you!" And then, "bye, bye, mama, bye, bye, Emma," and he walked back inside, took off his boots, mittens, coat, hat (not snow pants), and marched downstairs to play with his cars in the warm, dry playroom. Emma tried out her sled in the backyard and built a snow girl. Hurray! Public school is back in session tomorrow.

Barnes & Noble Event

This Sunday, 2 PM at the East Lansing Barnes & Noble our family will be helping out with the first annual Down Syndrome awareness event. It is inspired by Melissa Riggio, the 18-year-old daughter of B & N's CEO Steve Riggio. She wrote an article for National Geographic Kids about living a full life with DS and she is also an accomplished musician. At the event we will read the book, We'll Paint the Octopus Red, and do a craft. USA Today published an article this week about Melissa. Click HERE to read the article.

Speedy, Spotty, & Ariel

Emma had a great day yesterday. In the morning we purchased a fish bowl and 3 gold fish. The newest members of our family are named Speedy Lucky DeRogatis-Frilingos, Spotty Lucky DeRogatis-Frilingos, and Ariel Lucky DeRogatis-Frilingos. We were very happy to find that all three fish were with us this morning. In the afternoon Emma and her pal Annie went to the kid's theatre production "Sleeping Beauty and the 12 Dancing Princesses." Above is a photo of Emma with fish and Emma waiting for Annie to arrive at our house.

Fun with Photos

Cool Slideshows

Prince Joseph Attends a Princess Party!

No Time to Read

This month it is my turn to choose the book for the "No Time to Read" bookclub. My choice is Mark Slazman's, Lying Awake. Click here to order from Amazon and read the reviews.

Daddy & Daughter Valentine's Day Dance

Emma & Chris went to the daddy-daughter dance tonight. Emma bought Chris 4 truffles to celebrate the special night. I am happy to report that the double heart tattoo that she hoped to wear this evening didn't work when we tried to rub it on her cheek. As I type they are dancing the night away at the Hannah Community Center.

Lucy is Learning

Beverly Beckham writes about her 3-year-old granddaughter and the persistent misinformation given to parents about children with DS. The article "Lucy is Learning. But Are the Doctors?" was recently published in the Boston Globe. Click here to read the article. The article promotes the book Gifts, recently republished by Woodbine Press. Many of my blog friends (see links on right) have contributed essays in this book.