Sunday, October 31, 2010
Wednesday, October 27, 2010
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!
Thursday, October 14, 2010
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
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! http://www.signingtime.com/
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 - http://www.dadsmass.org/home
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.
Wednesday, October 6, 2010
- 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?
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
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.
Monday, October 4, 2010
Thank you to Bill and Ria (http://billandria.blogspot.com/2010/08/downs-syndrome-boy.html) for sharing this language guide written by the United Parent Support for Down Syndrome: Go to
http://www.upsfordowns.org/home.aspx. Click on "Information" in the drop down menu and then "Brochures" and "How do I talk."
Good words to use:
Baby/Child/Person with Down Syndrome - the emphasis should always be on the person first, not the disability. When we take care to put children first, and let the disability remain in the background, we are teaching others where the emphasis needs to be.
Developmentally Delayed - This term is the common reference to describe delays in development, such as language, walking and all other areas of a child's learning process. Most families find it less offensive than the term mentally retarded.
Has Down Syndrome - Someone who has Down syndrome is not a victim of, diseased by, nor do they suffer from or are they afflicted with Down Syndrome. They simply have Down syndrome.
Mental Retardation - This is an accurate term to describe developmental functioning level, but is less acceptable to many parents than the term "developmentally delayed". Use it with caution.
Typically developing/ Non-disabled child - Both of these terms are acceptable and positive ways to refer to people who do not have Down syndrome or another disability.
A Down(s) - A person with Down syndrome is not the disability. There are many things that should, and do, define that person. It is dehumanizing and strips people of their dignity to be referred to as a disability. Instead of saying "He is a Down" or "She is a Downs", try "He or she has Down syndrome."
Down Syndrome Child/Baby - This goes back to referring to the person first, not the disability.
Normal kids - Please realize that we perceive our children as being pretty normal kids. Comparing them to normal children implies that a child with Down syndrome is something less than normal.
Retard/Retarded - The best reference is developmentally delayed (for children) and developmentally disabled (for adults).
Mongolism - As most of us know, this is an extremely outdated term that was once used to refer to people with Down syndrome. This word should never be used when referring to or about someone with Down syndrome.
"They" as in "they are so loving; they smile all the time; they are always happy." - Please don't generalize about people with Down syndrome. "They" are not all alike; nor are people with Down syndrome "eternal children."
"How mild/severe is it?" - A person either has Down syndrome or they do not. Down syndrome is not an illness. Having Down syndrome does not mean a person is sick.
"But you're so young!" - Although the chances of a woman having a child with Down syndrome increase significantly over the age of 35, there are far more children with Down syndrome born to younger mothers - they are having more babies.
Handicapped - Use "has a disability" instead.
Downs or Down's Syndrome - There is no "s" or "'s" in the name of this syndrome.
Suffers From/ Afflicted With Down Syndrome - Our children are not suffering or afflicted. We must instill a great sense of pride and self-esteem in all children, so should ensure that we do not make anyone feel that Down syndrome is something terrible or something to be ashamed about.
I imagine that there are different opinions about whether or not some of this terminology is acceptable. More than anything, we want our friends, family and community to be thoughtful about the language they use about our sweet Bean.
Sunday, October 3, 2010
We do. It's Green Mountain Orchard in Putney,Vermont. Besides the fact that they have the most amazing apple cider doughnuts, sticky buns, pumpkin muffins, and apple pies, they have gorgeous rolling hills with beautiful apple trees --- And blueberries, plums and a pumpkin patch too!
I'm not sure how exactly this happened, but we've now been there every weekend since the last weekend in July. Sometimes we just walk and visit with the horses and chickens and have a snack. Other visits we load up on their fruit. I am loving those Macouns.
The vastness of the orchard seems to open us up. We find respite from our daily unfinished to-do list. Breathing in that sweet apple air, we fall into that happy, sleepy, silly, no worries kind of place. We walk, talk, listen, and laugh.
The pictures above are from today's visit with our love-bug. What a kiss-a-saurus!
Saturday, October 2, 2010
I have to say that today was pretty amazing. It was a cool crisp morning with bright blue skies and a warming sun. Nate was up early like last year - and so was I. This is a day we'd been waiting! We had a few minutes of family snuggling time (which these days mostly involves making funny sounds and funny faces) and then we were up and moving.
This day came together pretty perfectly.......Dedicated volunteers, amazing supporters, great vendors, an inspiring key note speech, lovely walk, great music and yummy lunch. Not only did we get to see old friends, but we made many new friends today as well. It just felt so good to be there. I think we must have had at least 300 people attend and had over $9500 in donations. Wow.
The best part of this magical day is that everywhere I looked I saw people smiling. It was just one of those days....
Thank you my family..thank you friends...thank you beautiful sunshine.
And most of all, thank you Bean for being you. We love every one of your 47 chromosomes.
Friday, October 1, 2010
Did you know October is Down Syndrome Awareness month??
We've decided to accept the 31 for 21 Blog Challenge from Unringing the Bell! (I'm having some difficulty connecting her link to this post).
It may be late -- but we're in ; )
Quote of the day....
“If we are to achieve a richer culture, rich in contrasting values, we must recognize the whole gamut of human potentialities,
and so weave a less arbitrary social fabric,
one in which each diverse human gift will find a fitting place.”
....now off to get some sleep before our 2nd Annual Brattleboro Buddy Walk tomorrow!!!