Sunday, October 31, 2010

My Creep-ing Skeleton!

Those slippery wood floors at Nonny and Grandpa John's house were just the thing Nate needed to show off his new moves! For Nate this is big stuff. You know we joke around a lot about how easy we've got it because Nate isn't walking (or crawling for that matter). But truthfully I think his immobility is getting to us all. Nate clearly wants to go places and his body simply can't cooperate. Although in some areas he's becoming more independent, this is one area in which he is still very dependent on us - and at 25 pounds he's a heavy load! So to see our little skeleton creep and pull on the floor like this was just beautiful. And so very exciting.

Happy Halloween!!!!

Wednesday, October 27, 2010

The first time Nate spoke to me: Written by Nonny

This past weekend,when Crista, Eric, and Nate were visiting for a glorious five days, Nate spoke to me. Now, I had seen Nate sign words and more recently, actually say words. Many of these times the speaking had been a response for a request to "bandstand" for us. For example, we would go, "what does an owl say," and Nate would intelligently respond with something that sounds like "who cooks for you!" Or we would say, "say hi," and Nate would shyly say in a little voice, "hi." But on Saturday night, he actually spoke to me, completely unprompted.I was getting him ready to go to bed by rocking him and singing to him. Foolishly, I thought any song would do. I began singing practice pieces from the choir I sing in. At one point, I sleepily lapsed into "la,la,la" when I heard a little voice slowly and quietly say, "luga, luga." Suddenly I got it. He wanted me to sing Baby Beluga! So I quickly switched into a much more formal singing mode and broke into Baby Beluga. Every once in a while, Nate would join in. Perhaps it was just my own vanity, but I had the sense he was thinking, "Gosh my Nonny is smart. She understands me and can sing any song I ask of her!" I hope this is just the beginning on many long conversations with my grandbean!

(Nate and my mom, "Nonny")

Thursday, October 14, 2010

My list of 21

things about Nate!

1. Nate can have the worst night of sleep and still wake up smiling. He just sits up, looks at us, and says , "hi" with the most beautiful smile.

2. When he's tired , Nate makes these squirty sounds with his mouth. We've actually tried to reproduce these sounds, but can't. Nate will "squirt" and then pull on our ears (not his own). Usually within minutes he's asleep.

3. Nate loves to read books. This has been his most favorite activity since he was just a little bean. Favorite books include The Very Busy Spider, Brown Bear, Whistle for Willie, and More More More. He just started pretending to read which is the most adorable and absolutely sweetest thing in the world. Nate's perfectly happy in the morning with a basket of books and a bowl of cheerios.

4. Nate really wants to do things like a big boy. He tries to put his socks on by laying them on top of his feet. Today he even tried to put his DAFOs on!

5. Nate is working on generalizing his learning. All things red are Elmo and all things that look like balls (like blueberries) are balls.

6. Nate loves laughing so much that he will even go as far as to tickle himself. He totally cracks himself up!

7. Nate is a totally love bug. He gives these big, loud dramatic kisses. I should also tell you that we made the mistake of showing him how mommy kitties clean their babies. You can imagine what Nate also likes to do now!

8. Music is clearly one of Nate's languages. He loves playing his drum, xylophone and toy piano. Nate also has quite the voice! He always chimes in when I sing to him at night. He loves Baby Beluga, My Favorite Things, Row Row Row Your Boat, and Itsy Bitsy Spider.

9. Sometimes it feels that Nate has one personality at home and one out in public. He's mister chatty at home and can be so quiet in new situations. It kills us when he gets that glazed over eye look and his head goes back, resting on his shoulders. I want to say, "that's not my kid"! Really!

10. He's not a multi-tasker. Mid bite (of a delicious chicken nugget, for example) Nate will decide he wants milk. Just thinking about wanting milk seems to make him feel some urgency to spit all of his food out. Aye aye aye!

11. Another big boy skill Nate loves to show-off is his ability to press his munchkin straw milk container shut. Over and over and over again. Then he acts like he's going to give it to us but then tosses off the side of his food tray. Yes, we are still working on this - haha

12. This is hard to explain, but Nate has these little special exchanges he does that are unique to certain people. For example when he sees his SLP, he always makes "fish lips." With me, he makes this scrunched up kissy face. When he sees his grammy, he coughs (because she does!). When he sees his 1:1 at school, he starts doing the little hand rhyme she taught him. These special exchanges with people seem to create much more intimate relationships. It's really pretty amazing.

13. Nate has just discovered (thanks to Grammy) that when you drop something, people will say, "uh oh." Of course Nate has his own variation of this, "uh UH oh."

14. I'm not sure if it is because of the last sound he hears, but Nate is starting to say words by their ending sounds. Milk has become /k/, for example.

15. Nate LOVES Elmo just from seeing a few DVDs on our laptop. He sleeps with his friend, "Mo" every night.

16. Nate is a total water boy. He could easily stay in the bathtub for an hour. He loves to scoop, pour water, and splash splash splash! On of his favorite things to do is pour water on his head. Go figure!

17. Nate is fascinated by light and shadows. At night when I put him to bed he loves to wave his hands in the air and see the shadows dance on the wall. When we're in the car, he loves watching the flickering light coming in through the car windows. I have to say that I love looking at light patterns too....

18. He also likes to identify all light sources by pointing them out to us. We swear he's communicating with some alien friends when he looks up at out dining room light. We also wonder if Nate is destined to be an electrician.

19. Nate isn't big on sweets except for vanilla ICE CREAM!! This summer I think he asked for it by sign every night.

20. His all-time favorite food is yo-yo. He eats yo-yo with Earth's Best's pears and mango every day.

21. More than anything Nate wants to be noticed you. He wants you to make faces with him, read books with him, sing songs, roll around with him, give him snacks or just be silly with him.....

Monday, October 11, 2010

We've been busy!!

So busy that I am having a hard time keeping up with the 31 for 21 challenge!! Yikes!!

It took us about a week to recoup the Brattleboro Buddy Walk. I don't think I had mentioned in the Buddy Walk post that we had been in the ER two nights before the walk because of croup! Nate's airway just closed right up on him! Well during last week Nate's cold got worse again (maybe a new virus - who knows?) and sleep deteriorated for all of us. I only have Nate so don't have much perspective on this but congestion for him is really pretty awful. Is it worse for DS kiddos? I don't know. He (and us) are just miserable when he gets sick. Nate takes these gurgly breaths and then chokes on all that phlegm. When we listen to him it feels like we're drowning. At one point on Saturday night we had to put him back in his crib for an hour just so we could get a little sleep. He snores, chokes a bit, then gasps for air. Just writing about it makes me feel short of breath. Ironically when are completely beat in the mornings Nate wakes up like a bright new penny (in my mom's words). Big green snot runs down onto his lips, eyes are totally crusty, and there's this scab of white snot above his lip and yet he's in the BEST mood! -- Smiling, making faces, giving us loud silly kisses. Just amazing.

Anywho, even though we were completely exhausted Sunday morning we packed up and headed out early to the MDSC Buddy Walk. We had been waiting for it all week!!

Our hero and inspiration Rachel Coleman performed before the walk. Yes, the Rachel Coleman from Signing Times!!! She was incredible with the kids and just as beautiful in person. Just about every sign we know is because of her. Nate can communicate with signs because of those wonderful Signing Time DVDs. Check her out!

Here she is performing......

We even got a picture with her and Hopkins!! --- Of course here I am trying to get Nate to just look at Rachel (not even sign) and all he can do is stare at Hopkins' fingers - hahaha

For the walk we joined our friend Noah's team. Noah's Dad is on the right. He helps to organize the Massachusetts D.A.D.S (Dads Appreciating Down Syndrome) chapter -
How cool is that?

They had over 3000 walkers on Sunday and raised over $326,000! WOW!!

After the walk we enjoyed catching up with old friends. We even got to see our cousin Meghan! She took this picture of us at the end of the day.....

AND.....I can't write a post without mentioning that my two most favorite brothers Jesse and David had birthdays in the last few weeks. Jesse turned 20 and David turned 30! This picture still cracks me up. Yes, there is our Nate, "kiss-a-saurus" magee, going after Jesse! Too cute.

Thursday, October 7, 2010

Wednesday, October 6, 2010

What was your first introduction to inclusion?

Last week Eric participated in a panel discussion through our local childcare association about early childhood inclusion. The panel included a preschool directer, early interventionist, a EEE teacher, child care provider and a parent. Each of the panelists were asked to answer the following questions:
  • What was your first experience with inclusion?
  • What is one example of a time inclusion worked well--what made it go well--what did it look like/sound like/feel like?
  • What is one example of a time when inclusion didn't go so well--what did that look like/sound like/feel like?
  • What is one recommendation/wish/ piece of advice you would give to others regarding inclusion?
When Eric was asked to address his first experience with inclusion he talked about an experience he had in college. He shared that one day when coming home from his classes he found himself on a bus sitting next to a young man with Down syndrome. Being friendly, Eric decided to ask the young man what he was doing. This young man shared with him that he was in the process of building a surfboard. Of course this peaked Eric's interest for two reasons: one because we live in New England and nowhere near the coast and (2) because it isn't very often you hear about an individual with Down syndrome building something like a surfboard!

For Eric that encounter represented the spirit of inclusion. Eric didn't know what kind of education this person had, but he knew from talking to him that something had worked. The fact that this young man was riding a bus to town (independently I might add) and talking to Eric about his surfboard showed that something was right about his education. It was clear that this young man's family, teachers, and community found a way to give him the skills and support he needed to pursue his dreams. Isn't that what inclusion is all about?

What was your first introduction to inclusion?

Tuesday, October 5, 2010

Airbrushing away diversity?

Our friend Jane shared this article with us soon after Nate was born. In light of all the advances in prenatal testing (which we hear is becoming safer and more accurate), we are faced as a culture and as a community to consider what this testing means for individuals with Down syndrome. Will we someday have a world without Nates?

This whole idea of prenatal testing feels a little like pulling a thread on a sweater. First we may be diagnosing Down syndrome prenatally, but down the road it could be the breast cancer gene or something else. It also makes me wonder about "designer" babies with pre-selected genes. Are we saying that there is more value in a certain kind of person or a certain kind of life?

On top of it there is so misinformation expectant mothers receive about Down syndrome. Unfortunately the medical community doesn't always give parents accurate and complete information about DS. Dr. Brian Skotko from Children's Hospital Boston reviewed research that showed a 15% decrease in births of babies with Down syndrome between 1989 and 2005 in the United States. Talk about airbrushing diversity! By no means are Eric and I advocating that prenatal testing not be done, or that other couples should make the same decision we did, but we do want medical staff to have accurate information about Down syndrome and a protocol for how they talk to families about what a Ds diagnosis really means in 2010. Things have changed a lot in the last 30 years!

Below is a picture of our Bean (and hopefully future taxpayer) that was taken at our first trimester screening.