Getting Down with Nate

My Creep-ing Skeleton!

2010-10-31T09:40:00.000-07:00

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!!!!

The first time Nate spoke to me: Written by Nonny

2010-10-27T18:16:00.000-07:00

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")

My list of 21

2010-10-14T17:26:00.000-07:00

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.....

We've been busy!!

2010-10-11T04:25:00.001-07:00

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! 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.

Happy Birthday Nonny!

2010-10-07T17:41:00.000-07:00

Love, Nate

What was your first introduction to inclusion?

2010-10-06T18:49:00.000-07:00

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?

Airbrushing away diversity?

2010-10-05T17:40:00.000-07:00

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?

http://www.canada.com/ottawacitizen/news/story.html?id=7ef9c418-70c1-49cc-bbbf-cb1ae997b326&p=1

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!

http://www.childrenshospital.org/newsroom/Site1339/mainpageS1339P1sublevel560.html

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

The language we use...

2010-10-04T16:51:00.000-07:00

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.

Big No-No's:
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.

Do you have a favorite place?

2010-10-03T17:36:00.001-07:00

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!

The 2nd Annual Brattleboro Buddy Walk!

2010-10-02T18:17:00.000-07:00

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.

31 for 21 Blog Challenge!!

2010-10-01T18:09:00.000-07:00

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.”
-Margaret Mead

....now off to get some sleep before our 2nd Annual Brattleboro Buddy Walk tomorrow!!!

http://brattleborobuddywalk.org/

Having a voice....

2010-08-18T10:33:00.000-07:00

In the last few months, Nate has really started to talk. At night before Nate falls asleep we hear him babbling up a storm in his crib (mostly to his friend, "Mo"). It takes all of us not to go in there and just swoop him up into our arms and start yakking away with him. It's just too damn sweet. There's some level of seriousness to what he's saying and yet it's so silly and playful at the same time. He babbles out a clear story and then inserts a few good raspberries at the end.

This is a video from over a month ago... I think Nate's vocabulary has tripled (at least) in the last few weeks, probably with his return to school. Even though it's sometimes hard to understand Nate, it's clear that he has something to say. The more words (and signs) he learns, the less frustrated he seems. Nate just seems like such a different kid now that he has some communication tools....

All we can hope is that Nate always feels this joyful about talking..........We want our Bean to know that what he has to say is important and that when he talks, we will always listen....

Yep, our Bean has a voice!

Relationships & Collaboration- The Bridges to Inclusion...

2010-07-23T10:53:00.000-07:00

A follow-up to our January post on inclusion (click link below to read)...

http://gettingdownwithnate.blogspot.com/2010/01/including-nate.html

This weekend a friend and former colleague and I were talking about issues that are important to us as we head into the new school year. I excitedly shared that our school district will be showing a free screening of the documentary, Including Samuel at our local theater and having presentation by the associate director of the Institute on Disability at UNH (Dr. Mary Schuh) during our opening day district meeting. I talked about how we have been working to create a more inclusive school district. My friend shared that inclusion doesn't always work - and may not always be what is best for a child all the time.

The bottom line is that inclusion is complicated....there are so many pieces to it. In some ways I feel like it's just become this blanket term about students with disabilities being able to learn with their non-disabled peers (that inclusion just happens and students are successful if you do this). Of course we want that for Nate when it works. But how we think about how Nate is included and learning is more than just having him in a classroom alongside of his peers. It's of about how we work together. Also, as we have mentioned before....having Nate participate in all general education programing and classrooms may not always be best for him at times during his schooling. Of course we don't want Nate to be excluded from opportunities with his peers and feel he should always have the choice to participate with his peers -- but we also know that for Nate participating in tenth grade Biology may not be providing him the optimal learning environment for where he is developmentally (then again, Science could be Nate's thing - who knows!). The point is that we don't know where Nate will be in his learning from year to year. More than just seeking inclusion for Nate, we hope that he has the opportunity to work with a team of teachers who are thoughtful, creative, and caring about his school programming. We want to learn and work together with his teachers and specialists to make thoughtful decisions about how Nate participates in school. This collaboration, like a beautifully woven quilt, is what creates a meaningful school experience for Nate. It is what ultimately helps Nate become a productive and included member in his community...

So what makes this collaboration work?

Relationships.

How we work together...How we listen...How we share we share our opinions...How we share our knowledge and expertise...How we respect each other...How we value what each member of his IEP team brings to the table.

The relationships I have with Nate's teachers and the relationships his teachers have with him are just so very important to our work together...

I am not sure Nate would have had the kinds of successes he had last year if it weren't for his amazing teachers and specialists and the time they took to work with us...for Nate.

Yes, relationships and collaboration are the bridges to inclusion....

Here is Nate with his beloved teacher, "Aggy."

Thank you to all of Nate's team ...
You have done so much to help Nate learn and grow
and be included in his classroom community...

2 years ago today...

2010-07-11T11:19:00.000-07:00

we welcomed our sweet Bean into our family!

Happy Birthday Nate!!

The night before you arrived...

Born at 7:06 on July 11, 2008...

One!

....And our now two year old!

We love our Daddies...

2010-06-20T04:22:00.000-07:00

...Nate with his Daddy

with Grampy...

with Grandpa John..

with his Papi...

and his Papi with me....

So much love!

He ate a whaaa?

2010-06-16T04:59:00.001-07:00

A cinnamon raisin bagel.......

and a BLACK.....

BEAN....

QUESADILLA!!

So essentially Nate went from eating 4 foods, to about 8 in a week! We're over the moon! I actually got a little teary when he put the quesadilla in his mouth. Any of you who have dealt with picky eaters who try new foods know the feeling I am sure..

"Look Ma, I can even eat it with no hands!"

Becoming a Momma....

2010-05-12T17:53:00.000-07:00

took a very long time for me. I remember when Eric and I started trying to get pregnant. We were so sure that first night of unprotected sex would surely knock me up. We laugh about it now.

It's hard to describe the pain of infertility to those who haven't experienced it. I felt broke...incapable...and end...not enough...and so very alone. I was an outsider to a club I wanted so desperately to be a part of. So many nights I would put my hand to my belly trying to will life out of it. It felt so cruel and unfair to me. I felt like a misfit. Each month I didn't get pregnant I felt myself giving in more to the anger and hopelessness. I secretly cursed my pregnant friends. Although I knew it wasn't their faults (that they had what I wanted), I hated and envied them anyway.And I just couldn't (or wouldn't) accept being childless.....

Four years later, after 8 IUIs, an IVF and subsequent miscarriage, and a FET (Frozen Embryo Transfer), I became pregnant with Nate. Although I had taken about 8 pregnancies tests (at least!) I got the official HCG blood test results the day before Thanksgiving. Yes, how perfect is that?

Becoming a momma...and more specifically becoming Nate's momma has been a journey into love.

I still remember the first time Nate really saw me (and not just my boobs!). We were out apple picking and Nate was in the baby bjourn. Eric likes to characterize this time as the beginning of "momma worshipping." That look was full of anticipation...curiosity and vulnerability (Or maybe it was me who felt vulnerable with those eyes locking into mine...)

Over the last two years, we have learned how to communicate with the most subtle of looks or touches....I know all of the ridiculous faces he makes by heart...I know what will make him laugh and that tears won't last as long if I sing My Favorite Things (yes, this is one of Nate's most favorite songs). I feel phantom touches - little fingers pinching my neck - or hands gliding up and down my arm - when we're apart. I know him (as he knows me)...

This love we share is intimate, full of trust, knowing and belonging....

for both of us.

More cheese pizza please!

2010-03-11T04:10:00.000-08:00

After his surgery Nate would only eat a handful of things...yogurt, baby cereal, Earth's Best Turkey Dinner, pureed fruit (only in jars), Pirate Booty and Goldfish. AND he hardly had an appetite. It was like we had taken a few steps back again with his eating and we were already feeling behind. There seemed to be so many issues to address with his eating - desire, texture, quantity (for calories), and movement towards some self feeding. Ugh. We felt super stuck and rather depressed about it all. Eric and I kept telling ourselves to keep plugging away with the food we offered Nate. That's all we could do - Right? We were reminded that it sometimes takes 10 tries to get a little one to start eating a new food.

As some of you know, Nate and I took a wonderful trip down to B-more to see my family. We're not exactly sure what magic happened while we were there, but it seemed like Nate changed during that trip. Besides just being in the sweetest mood ever, he was more active, more communicative, and more hungry!! By the time we left, he was eating peas again and a lot more snacks. Whew!

When we came back, everyone seemed to notice something different about Nate (besides his new haircut - hehe). The ENT we saw for his post adenoidectomy follow-up remarked that Nate seemed older. At school, his teachers shared that Nate was signing like crazy and moving around on the floor a lot more - -He could sit and pivot around to get something! Also they were able to get him to eat some regular fruit, English muffin, and waffle. Super exciting.

BUT, Nate still wouldn't try anything for us at home.........

....Well until last Friday........

We were shot from the week and neither us felt like cooking, so Eric threw an Amy's cheese pizza into the oven. After Nate had some pureed peas and a jar of turkey dinner, I decided to offer him a little cheese pizza. Now I should tell you that one of Nate's favorite songs is from a Signing Time DVD. It is the famous Silly Pizza Song. I know some of you will know what song I'm talking about. Since watching those the Signing Time DVDs, Nate has been signing many foods he hasn't tried yet, one of them being cheese. He also was familiar with pizza - and for him, the sign for pizza kinda looked like snake too - a new favorite sign (which also kind of looked like Nate giving us the middle finger too! haha).

Here are both signs:
Pizza (Nate does variation 3): http://www.lifeprint.com/asl101/pages-signs/p/pizza.htm
Snake: http://www.lifeprint.com/asl101/pages-signs/s/snake.htm

Once I offered Nate one bite of pizza, he asked for more and more and more until he ate an entire piece of pizza! I nearly cried.

So without further adieu --- More cheese pizza please - starring Nate!!

My joy......

2010-03-03T04:28:00.001-08:00

Tubes In Adenoids Out

2010-01-26T18:05:00.000-08:00

Since his birth, Nate has had chronic congestion. On top of that, recent hearing tests (specifically tympanometry) indicated that he has fluid in his middle ear. Very often people with Down syndrome have poor Eustachian tube function. This tube connects the middle ear to the pharynx and allows for ventilation. When the tube is shorter (which is often the case with in children with T21), there is increased potential for fluid to collect (instead of drain). The gunky fluid that collects in the middle ear can make children more prone to ear infections and can cause conductive hearing loss. According to the book, Early Communication Skills for Children with Down Syndrome, an estimated 65 - 80 percent of children with Down syndrome have conductive hearing loss. Even though the hearing loss varies, a build-up of middle ear fluid may make a child hear, "It's fine to go get fed" when you said, "It's time to go to bed."

At our recent ENT visit in January, the doc still couldn't see in Nate's ears. Based on his hearing test, chronic congestion, sleep apnea, and ear infections she recommended long term ear tubes and an adenoidectomy. Well, she said she'd at least try to get tubes in and take his adenoids out.

Well the good news is that Nate had his surgery on Tuesday and it was a success -the tubes are in and the adenoids out. Our amazing doc was pretty determined. She also mentioned that his tonsils were bigger than she thought. It could be another factor contributing to his sleep apnea. Hopefully we'll know more about that after his sleep study in May.

The not-so-good news is that Nate has had a pretty high fever since his surgery. He had some difficulty waking up from anesthesia and did need extra oxygen. After a few hours (with lots of singing and us reading his favorite books to him), we finally got him to stop crying and eat some pureed pears and drink a little milk. We thought he was perking up! Well we got home and felt super hot. He had a lot of difficulty breathing and developed a yucky croupy cough. I think some of that is expected after surgery. Though what is not expected, is that Nate has basically had a fever daily (spiking to 103 and higher) since Tuesday and has been quite lethargic. He's been up for only a few hours each day. Just not his spunky little self.

Today, Saturday, his pediatrician had us come in again. We decided to go ahead and get a CBC on him. This afternoon we got the good news that his white blood cell count is in the normal range, indicating that Nate probably has a virus. He has been more thirsty today and finally ate a little of his favorite snack - Pirate Booty! Of course he crashed again by 5, falling asleep in our arms, poor Beanaroni.

I am trying not to worry....I keep reminding myself that children get sick. They all do. We've just never seen Nate quite so tired - he can't keep his eyes open. He's like a little droopy flower. When he is wake, he has a continuous little whimper. Oh it is just awful. He clearly doesn't feel well and he can't tell us where it hurts. And the worst part -we can't fix it - which is what we really want to do. He looks at us with those big teary eyes and all we can do is hold him tight and say, "I know, I know, it's going to be okay, you'll be better soon...Mommy and Daddy love you..."
(Boy, I wish all it took was love!)

***Edited Tuesday --- Nate's fever is gone!! Wahoo! --***

So here are a few pictures from our week. They seem to capture it all........

Ooooohh - toe light (the highlight of surgery day)

After the novelty of the toe light wore off and Nate realized
that he would rather be home.....

Our sick little boy sleeping in Mommy and Daddy's bed.

Including Nate

2010-01-19T18:01:00.000-08:00

As some of you know, I am a special educator. Recently, our school district participated in a study that included taking a closer look at our special education delivery model, how we use paras in relationship to providing FAPE (Free and Appropriate Public Education) and LRE
( Least Restrictive Environment). The study was headed up by UVM professor, Michael Giangreco (see his work at http://vtcite.info/~mgiangre/). The dialog between our special education coordinator, our school principal, and speech language pathologist brought up many questions for me both as a teacher and as a parent about what inclusion means. Do I think all students should be working towards grade level expectations? Or should some students work on life skills? Is the LRE always the general education classroom? How do we fit therapies into a student's day (especially when it often means that students are coming out of their classrooms)? Should all students with disabilities be learning alongside their non-disabled peers most of the time?

Micheal Ginagreco recommended the documentary, Including Samuel. If you haven't seen it, find it and watch it. It is powerful and thought provoking.

Here is the trailer:
http://www.includingsamuel.com/media/Video/ExtendedTrailer.aspx

After watching the film, Eric and I started to talk more about how we wanted Nate to be included. We realized that it was much easier to talk about what we wanted for Nate, rather than focus on the model.

We want Nate to feel included and part of a meaningful learning community. We want Nate to have friends. We want Nate's friends to know and appreciate who he is. We want Nate to develop his reading, writing, and math skills. We want Nate to have the opportunity to participate in the general education curriculum whenever he can (and it seems appropriate). We want Nate to have times in his day where he doesn't have a 1:1 stuck to him. We want teachers to see his strengths and build on them. We want a strong collaborative team that is able to be reflective and think creatively about how to help Nate have a successful school experience. We want Nate to develop life skills so that he can be independent in his adult life.
If I give myself a few more minutes I am sure the list go on....

It's difficult for me to say that there is one way or one model to work with children who are differently abled. Besides there being such a range of disabilities, our children are unique as well. On top of it, there are such differences in the size of our schools, the resources they have, and the teachers they employ. Also what is best for Nate one year may not be what's best for him next year. Needs change (I guess that could be interpreted two ways!).

I am not sure I can say what inclusion means to us in a three paragraph blog entry. It's complicated and full of layers. I do know that after I watched the documentary, I know that how Nate is included has to be fluid, flexible and full of creativity.....

What does inclusion mean to you? What do you want for your children?

Our Little Champ

2010-01-14T18:51:00.000-08:00

It's hard to imagine that learning to get into the sit position could be so difficult. Just look at how hard he's working!

What a champ!-- And also check out those signs too! Go Bean Go!

Nate's presence....

2010-01-02T11:52:00.000-08:00

When I was about 11 weeks pregnant with Nate, I lost control of my car on a major highway. It was around 5 o'clock on a cold January afternoon. I had stayed at work late and was driving home completely exhausted. I remember driving in the right hand lane thinking there was a car approaching me to the left. I quickly jerked the car to the right so much so that I lost control of the car. I overcompensated for this and pulled the car left until I spun around crashing into the guard rail in the passing lane. It all happened so fast. Then there was silence. My heart raced and I took a huge gasp of air. I was alive. Somehow in those few moments there was a break in traffic. It still doesn't seem possible. My mind was already working at double speed. Again and again I played it over in my mind. Surely I was dead. I had to be - right? I was convinced that if I were alive I must have killed our unborn baby. There's no way we could both live through the accident. Maybe I wasn't meant to be a mother. How would Eric forgive me?

The next few seconds were a blur to me. I continued to try and reconcile how and why I was still alive. I shouldn't have been. What about my baby? As the lights from the increasing traffic got brighter I realized that I needed to get out of the car - fast. Trucks and cars were speeding by to the point where I could feel the ground shudder beneath my feet. A family had pulled up behind me and put on their hazard lights. A man (a dad I soon realized) jumped out of the car and asked if I was okay. I was breathing so hard I could barely get a word out. He told me that he would call 911. After he made the call, he headed back to his car to leave. At that point I did something so selfish that I still regret today. I asked the man to stay. I told him I was pregnant and completely terrified. It was like it finally clicked that I was alive. I had to protect my baby. The man quickly herded his wife and two kids out of the car and had them stand by me off in the median until the police came. They could have been killed. It all was terribly unsafe.

The police arrived within 5 minutes or so - Thank goodness. My car was turned in the complete opposite direction, so all traffic on the highway had to be stopped. The man and his family started heading back to their car. I hugged the man and cried. "Thank you for not leaving me," I said to him, "Thank you so much." That was the last I saw of the man and his family. I don't know how I would have gotten through any of it without him.

This event continues to live in me today. I can still recall that split second when I lost control of the car. My heart starts racing and I feel this raw, burning feeling in my gut. It is more than amazing that I survived. A split second before or after that moment and I would have been dead and my Nate-Bean would have just been a dream.

After the accident, Nate's presence in my body and heart became more pronounced. We had survived the accident together. I also felt like in some strange way, it was the intent of his little spirit that kept us both alive. He was supposed to be...

I am not 100% why I have been thinking about the accident.....Perhaps it is all the traveling we've been doing or my father dying so unexpectedly. I do have to say that it strikes me how I was in a situation (car spinning out of control on the highway) in which I should have died (or at least been hurt) and my dad did something that we all do most nights -- he simply fell asleep and yet he died. Based on our experiences we develop some rational about how things work. Neither of these events make sense to me. What or who determines how our lives will unfold or end?

One thing I do know, is that Nate's presence in my life then and now is incredibly strong and healing. Even though it has been difficult understanding my dad's death, I know it would be so much harder if I didn't have Nate in my life. He is determined, willful, curious, engaging, and just so alive.

He is our sweet and very special Bean.

Now for some pictures.......

Heading down to Baltimore...

Nate aspirating Daddy's nose...

Nate with his Grandma-ma on Christmas...

Cuddled up to Uncle David...

My sweet family......

Forgiveness....

2009-10-28T03:50:00.000-07:00

My father and I didn't always have the easiest of relationships. He lived a "hard" life - - drank and smoked for many years. I am sure I didn't always help situations either. We were close, but definitely had bumps along the way........

At some point I just decided to not put these unreasonable expectations on my dad. I let go of the little stuff and decided to focus on what was good....I realized that he's had a tough life and I became more forgiving...That shift in my thinking changed a lot of things for us....

When I got pregnant with Nate, he vowed to call me every single night. I think there have only been a handful of days in the last few years that we haven't spoke. In fact I think I can count those evenings on my fingers. He hasn't come up to visit me often, but he does know everything about our days - From what we are having for dinner --to the weather (always a favorite topic), and course that daily scoop on the "Bean." My dad could tell you all of the things that Nate can do. He has been incredibly supportive and so just so confident that we will get through our toughest days. My dad seemed to have more faith in us than we had in ourselves....

My two cents for the day -----For those family relationships that are challenging -Look at where you can let go a bit - Hold the line with things that are very important, but also find opportunities to be forgiving. There is a reason your family members became the people they are -----My mom once shared with me a profound (yet so simple) revelation she had: Find forgiveness and have faith in the power of love.

You just never know when you'll have to say goodbye........

Dad and Lorie came to see us the day after Nate was born....

This was the first time he got to meet his grandson...

I love this picture.

Goodbye Papi

2009-10-27T15:12:00.000-07:00

At 2:30 this afternoon, my brother and stepmother called me at work to tell me that my father had passed away in his sleep. It was very unexpected --- Truthfully I think we're all still in shock.I am so glad that my dad got to meet and spend time with Nate. He was definitely a proud Papi!

We love you and will miss you so much.........

Bean's Buddies....

2009-10-19T17:41:00.000-07:00

On Saturday, we woke up to a cool crisp autumn morning. There was that sweet smell of wood stove which almost made us believe there were eggs and bacon already cooking for us in the kitchen. I actually woke up at 5 a.m. and remarked to Eric that it somehow felt like Christmas morning. I am not sure what exactly it was - Perhaps it was a combination of the sweet smell of burning wood and that all encompassing quiet of early morning. You know that kind of quiet that you take in knowing that your day will be exciting, and that somehow your day will change you. And yes it was an exciting day. A day in fact to celebrate all that Nate brings to our lives. A day to celebrate every one of his perfect 47 chromosomes!

Eric set off early in the morning to help set-up. Nate's cold was pretty bad still so we took our time getting over to the park. Nate enjoyed a steamy bath and a big bowl of oatmeal and peaches.

As soon as we got there, Eric waved me over to do an interview with him for our local radio station. Even though we had been talking and planning this day for months, in that moment it was so hard to find a few words that captured what this day meant to us. How do we explain this day to people who don't even really know what Down syndrome is? (I should tell you that Nate was quite fascinated by the big black foam-topped microphone that the dj had -and boy he really looked like he had something he wanted to say- perhaps he'll have a future on the radio!)

There was our walk, fantastic music, an amazing key note speech, and wonderful performances. In some ways the day was a blur --- so much love, so many family and friends, so many hugs, so much to celebrate. Looking back on the day, Eric and I felt like we needed more time to connect with folks. There are many people we wanted to talk to and didn't. Eric actually thought a potluck the night before could have been fun. We have also talked about setting up a parent group for the Valley. One day just isn't enough to meet and talk to people in our "tribe."

Although there are probably things that could be improved for next year, all in all, this year's Buddy Walk was a great success. The time and commitment that the planning team dedicated to this event was evident --The day was quite special. Over 200 people came and I think we raised over $6000! Pretty impressive for our first walk!!?? Right??!!

Of course minutes into the walk itself, Nate feel asleep. I guess that is what a steamy bath and a big bowl of oatmeal will do to you on a cool crisp autumn morning.....Yes, it was a pretty perfect day for all........

Brattleboro Buddy Walk!

2009-10-15T17:06:00.000-07:00

Is in two days -------October 17th!

So the weather forecast doesn't appear to be so great (Mother Nature is not looking like our Buddy), but we are still hopeful that we will have a great turn out and a truly special day!!

Listen here for my interview with Monte from WRSI, 93.9 The River:
http://www.wrsi.com/pages/3243131.php

Click on "Buddy Walk" under podcasts.

At the orchard with our Bean.......
It's just impossible to think of our lives without our sweet Nate....

Belonging

2009-10-14T17:13:00.000-07:00

Have you been wondering how school (Daycare - but don't tell Nate) is going???

Well it's been going great!! Our month long transition into Winston Prouty was worth every minute. The school community is pretty awesome. Nate is in a very diverse class with some pretty cute 15 month to 2 year old kiddos. His teachers are incredibly caring and supportive. They are also quite skilled in what they do. They participate in regular professional development and believe that all students in their program are unique and special little beings. So true.
Here is more info about the program (pretty cool - right?):
http://www.winstonprouty.org/early_learning_center.htm

Now that we're here....2 weeks into it, I can say that we are feeling like this is right for Nate. Truthfully I don't think we could find another daycare situation quite like this. Nate's interventionists work right there in the school. They can provide intervention right in his classroom and model strategies for his teachers to use. It doesn't mean that all is perfect every day...We still find ourselves needing to advocate for Nate - or even just speak up when things don't seem to be handled appropriately for him. For example this week, a 16 month developmental questionnaire came home for us to fill out. Out of about 50 things listed on the questionnaire, Nate could do about two of the listed developmental skills. A big oops on their part. However, they are always ready to listen to our concerns, respect our knowledge of Nate, and support our goals for him.

What really is exciting is that Nate is becoming a part of an inclusive classroom community. Nate's new friends want to play games with him, want to pull him around in the wagon - grab his glasses off his face. When Nate arrives in the morning, they all hurry over to the classroom entrance calling out his name. I am not sure he gets their excitement -It probably means more to us at this moment than Nate. But our hope is that someday he will be able to understand that his classmates like him and care that he's a part of their day. That his presence in is important -- That they would notice if he wasn't there.

What more could we ask for. Isn't that what a lot of us want? To belong?

Thank you Winston Prouty - You are a pretty special place!

Ch-ch-changes.....

2009-09-12T09:30:00.000-07:00

So after the 30th person asked us how old our little girl was, we decided it was time to get Nate's hair cut..... (Nate and his "new look" below)

Speaking of changes......after many drippy sippy cup drinks, Eric decided to try a straw cup with Nate.

And guess what??!!

He LOVED it!!!! Nate's great with a straw! No more sippy cups for Bean!! Wahoo!!

Finding pace...

2009-09-12T08:21:00.000-07:00

Sitting back and reflecting, I am struck at how positively rushed our life feels right now. I have to say this pace is very unsettling. Our transitions (Nate to school and mine to work) have felt hard to say the least. We all miss those summer days when we had no idea of the time or day. We were spontaneous and just living in the moment, letting Nate be our guide. Now it feels like we carry the weight of some superimposed granite clock in our days, counting minutes, following calendars, and attempting to check things off an endless to-do list. I just have to note that as I write this I am hearing "the ants go marching one by one, hurrah, hurrah" in my head (lack of sleep? or my delirium from our crazed week?) . And even though I know we know that we are not the only ones who feel this way, I am still finding myself feeling so resentful and angry that this is the way we are living our life. Where's the peace in this pace? (yea say that ten times!).

And then there's Nate, a guy who definitely moves at his own pace. Eric and I have felt so conflicted about these changes in our lives. Should I have stayed home longer with Nate? Although we know there are many benefits to Nate starting preschool/day care, we also wonder if he would be better at home a little longer. Unless Nate has a corner to himself, preschool is a pretty hostile environment for our Bean. In his class of 9 children, Nate is the only one who isn't mobile at all. Not only is he having to get used to all the sounds that other little ones are making (talking, crying to screaming), he also has limited ways to defend himself when other kids come into his space and touch him. Nate can't crawl or walk away, he can cry and that's about it. His mobility issues also impact his play. He needs to get "placed" in play situations when other kiddos can move in and out of play choices. I know there are many benefits to preschool too- don't get me wrong. I just wonder if Nate would get more out of preschool if he were mobile. I have to tell you if there's one thing we've learned from other families about Down syndrome, it is that Down syndrome children learn to do all the same things that other kids do, but just at their own pace.

So I feel conflicted. Is it better to let Nate be the guide? Or is it better to have him in preschool, a place which may be a more challenging environment for him?

Packing and Unpacking

2009-08-23T04:45:00.001-07:00

Packing.........

It is hard to believe that this is the last weekend of a truly wonderful summer with Bean. Our summer began with me packing up my corner of the Learning Lab in Conway and saying goodbye to the many good friends I made there along the way. In June I accepted the position of special educator in my K-8 hometown school. No longer will I be 40 to 45 minutes away from my dear Bean; my new school is only a mere 8 minutes from my house. It is also only about a 15 minute drive to Nate's school/daycare that he'll be attending in the fall. Such a serendipitous blessing for us all!

We also packed our suitcases for two wonderful summer vacations - One to Maine and the other to my hometown in Baltimore, MD. Nate got to share precious time with his grandparents and uncles. He also spent time with great aunts and uncles, cousins, and his great- grandma. We visited many friends and even found time for a trip to the zoo! Though I have to say that Nate, as a "puller" and "grabber" these days, was more interested in the plants and bushes he could reach out to while in his stroller than the animals.

In August, we packed up our towels and sunscreen and headed to a town pool with our local gang (Mommies and toddlers). It was a first for Nate! We lathered him up in sunscreen, put on shirt and hat, packed up our toys and towels and enjoyed playing in the pool on a hot summer day. I think we stayed in the water for over 2 hours. It was heavenly for us both.

This summer we also packed up Nate's portable high chair and headed out to meet several new families who have little ones with Down syndrome. We hope to find a way to create a playgroup with these boys who are so close in age. In addition to meeting new friends, we so enjoyed seeing our old friends - R-man in Bratt and big boy P all the way up from DC.

And there was unpacking too......

So starts a season of many big transitions for us all. Unpacking also represents change and new beginnings. My heart sinks when I think about it. It's all good, but new. I start working full-time again (and sadly have to say good-bye to my days with Nate), Eric is home with Bean for the month of September, and Nate begins the transition to preschool. Lots of unpacking, shifting, and settling into new routines.

Speaking of transitions (and unpacking), we think Nate is on the verge of another milestone. Usually right before something big changes for him, we see a bit of regression and plateauing of skills. Perhaps putting together some new skill takes all of his focus -- he's working so hard at one thing, other skills lose priority for him. Because motor skills in general are so challenging for Nate, we've come to really appreciate all that goes into a motor milestone. I watch toddlers move effortlessly from sitting, to side lying, to squirming on the floor. It's fluid and so natural for them. Yet for Nate, we have to break-down the skill into all the prerequisite steps that go into the action. So we practice helping him move to side-lying when transitioning to a sitting position. We provide hip support to work his mid section muscles. We also continue to work on strengthening his upper body so that he can use his arms to support his body. For Nate, this work is hard. I don't mean a little hard, but red-cheek-heart racing hard. A real workout. Essentially we have to unpack all these developmental milestones for him. Luckily, the wonderful book, "Gross Motor Skills in Children with Down Syndrome, A Guide for Parents and Professionals," by Patricia C. Winders does a lot of the work for us. Thank you!

So yes, lots of packing and unpacking this summer. So many new experiences for all of us...

And now for some pictures.......

Pushing up is getting easier ; )

Quadruped --- Not a favorite position to be placed in...

At the pool....Ahhhhhhhhh

Happy visiting his Richmond cousins! Bye bye!

Our 1 year well visit...

2009-07-23T05:02:00.000-07:00

went well! I again was asked to educate a medical student about Nate and his Down syndrome. I am of course happy to do this, however, sometimes I would like us to just have a regular visit with our doc. Our doc always asks me to point out all of Nate's physical characteristics that are related to DS. I kind of go into automatic pilot now when I do this. Maybe it bugs me because I want the visit to really be about Nate...not just his Down syndrome. Does that make sense?

Anywho, here are his current stats:

Weight: 21.1 lbs
Height: 29 1/2 in.
Head Circumference: 45 cm

Yes, thank goodness, our Bean continues to be healthy. Our big issues now are with his swallowing and possible reflux. Today we meet with the nutritionist and will introduce "thick-it." Thick-it will hopefully help Nate be able to better swallow water. We also got a prescription for a reflux med, Ranitidine, to try. Nate does need to get his hearing tested again, but we have decided to wait and have that done at our next trip to Beantown and BCH.

AND of course we need to give a glasses update! Nate can now keep them on for 10-15 minutes at a time! We actually think he likes them!

I wonder what his world looks like now.........

Nate's new glasses!

2009-07-22T09:31:00.000-07:00

Nate's glasses finally came in yesterday. I think the verdict is still out on them. Unfortunately we don't think they fit him very well. Not only is he still a peanut, his ears are lower set and the bridge of his nose isn't as defined. There are wonderful glasses for kiddos with DS, but they don't have sizes small enough for little ones like Nate-Bean. Right now we're just working on keeping them on!

A week ago yesterday....

2009-07-19T07:15:00.000-07:00

Our little boy turned one!

There is so much to say about our year with him. It's interesting to us that although we of course loved him dearly since the day he was born (well truthfully conceived!), he felt a little bit like a stranger to us. In the past year his personality has started to reveal itself. Nate Bean is clearly a little person with his own place in our family. He is curious, busy, funny, and just so musical. He loves his yo-baby yogurt but detests spinach and potatoes. Sometimes before he falls asleep, Nate gets super silly and can end up in a fit of giggles. Favorite toys include butterfly, dad's nose, the big white spoon and of course the mirror. He's a talker too --- Dadadadada and some new monkey noises too!

We can't imagine our days without our sweet Bean.
We love you Nate!

Perspective

2009-05-20T12:36:00.000-07:00

I have been thinking a lot about perspective. Sometimes it is shifting the way we see something (literally in Bean's case) or life's backdrop that changes our perspective and ultimately our experiences with ourselves and one another.

Nate's big shift is that he's pretty much sitting on his own. About two weeks ago he basically sat all by himself for his whole music class!! It was amazing to follow his eyes and see what he noticed. He played with all the instruments and just loved looking at all the other children. And the cool thing is - once he started engaging more, the other children wanted to engage with him more. At one point, a little girl decided that Nate's lap would be the perfect place to sit. You should have seen Nate's face - It was priceless!

Just a simple shift in in our thinking allows us to see all the things Nate can do.
Again, it is all in perspective.

This and That

2009-05-19T03:38:00.000-07:00

The last few weeks -- or has it been a month (yikes) have felt like a blur. Lots of sun...laughing...sleepless nights...and baby babble....

First the swallowing study....Here's a pic:

The good news is that all is well on the swallowing front. Nate still can only handle pureed food. Looks like we may have to talk to a SLP or feeding specialist about that. In general eating is going better. He is eating 3 meals now!

Also - the EEG came back, "relatively normal" - however, the doc still recommended that we follow-up with a neurologist. I should note that at first we thought we would just wait to see a neuro. But over the last few weeks, Nate's odd behavior continues to increase -and not just when he is eating. He also is doing some weird eye-rolling-in the back of his head stuff. Not sure what to make of it, but are thinking we really do need to see someone.

Ahh - the sleepless nights. It's still so funny to me how many times I heard that Down syndrome babies sleep well. Ha! Last night was our hardest night yet. I am not sure how any of us will function today. I think Nate was up every 30-45 minutes last night. At this point we just want something to show for all of our hours awake. A tooth would be nice.

Pictures that make me smile

2009-04-29T18:17:00.000-07:00

Nate's nighttime routine: bath, story, snuggle with Mommy

My nighttime routine: tea, pumping, & pictures of Nate

Nate discovers himself in the mirror.....hehe

Peek-a boo! (By the way we love playing in the laundry basket!)

Nate recently became a more proficient roller
and you can see where this got him!

This is an oldie that always makes us laugh -
We saw this face a lot for a couple of weeks.

Eye to eye with the giraffe..horse..what the heck are you anyway animal??

Beantown continued...

2009-04-25T10:50:00.000-07:00

Friday was such a beautiful day. We got ready early and walked over to the hospital. Nate did really well with the EEG. First his head was measured and marked (for correct electrode placement). Next the nurse used sticky tape to place about the 20 or so electrodes to his head. These were attached to many different colored wires. We sang our whole repertoire of songs to Nate -- and as long as were singing, Nate was happy. After he was hooked up, the nurse used a strobe light with Nate. It hurt our eyes, but Nate loved it - ha! Then we fed him to see if he would do the concerning behavior. Unfortunately by this point Nate was super sleepy and just wanted to nurse. So I nursed him and his brain activity was recorded while he slept. Poor Bean only got to sleep a few minutes before the nurse wanted to see him aroused. When calling his name didn't work, the nurse tickled his ear. That woke him right up --- I could tell by the look on his face that he knew he got gypped on his nap. We don't think the results will show much --- but I guess we'll get the official word from the doc next week.
Here's Nate with his head wrapped up.

Nate's eye appointment was long...but very interesting. You may remember that at Nate's PT appointment yesterday we mentioned that he tilts his head to one side. Well the doc thinks that when Nate tilts his head he is actually able to focus and coordinate his eyes better. So rather than this being an issue perhaps related to torticolis, in fact it is an adaptation that Nate is doing to help him see better. The eye doctor also noted that Nate's eyes turn inward when he's trying to focus - and that this too is another way he is coping with being far-sighted. The doc thinks glasses will really help --It'll just be a matter of us finding a way to keep them on!

Here are some more pics of our Boston visit.....

Side sitting with PT, Priscilla Osborne:

Snuggling with Papa after clinic day....

Nate's grandparents came to visit us at the hotel and brought him a new pair of shoes!

Beantown!

2009-04-23T18:10:00.000-07:00

On our way into Boston we stopped by my cousin's house. Truthfully they really feel like my aunt and uncle. We hadn't seen each other in over twenty years! We had a delicious dinner and told stories of Great Grandma Zimroot and Peter. What a lovely way to start our Boston visit! Thank you Cheryl and Richie.

So the clinic. First of all, Angela, the DS clinic coordinator is amazing. She made everything about this day feel easy. Second, our little Bean did remarkably well. He was his sweet self from 9 - until 2! Pretty amazing.

When we arrived, a nurse came and did a weight and length check on Bean. He is 19 lbs, 6 ounces and 27 1/2 inched long.

Our first appointment was with the dentist. She talked to us about the importance of preventing cavities in Nate's baby teeth. The dentist swabbed both Nate and I for Streptococcus bacteria (http://en.wikipedia.org/wiki/Streptococcus_mutans). She also did an oral exam - Low and behold she saw several tooth buds on the top and bottom of Nate's mouth!!! Besides seeing the outlines of these baby teeth, we learned that dry red cheeks and smelly pee pee diapers can indicate that teeth are on their way. Just the other day E and I were noting just how pungent Nate's diaper was (sans poop). With the increase of drool, the theory is that babies tend to get a little more dehydrated when they are teething. Maybe this explains our difficult nights! Poor baby!

Next we saw the nutritionist. Nate ate (and of course didn't do his funny behavior stuff or choking). He 's right where he should be in terms of weight and length. We talked food and milk. She did give us the go ahead to start yogurt - yummy!

After this appointment Nate got super sleepy and took a short shnoozey. He then went to see the physical therapist. She was great - so experienced and insightful. On cue Nate rolled from his belly to his back and then from his back to his belly. Such a performer. She had a whole bunch of toys and put him in all kinds of positions. He loved it! At one point she used a little wooden chair as a little desk for him. His legs were tucked under and he could play with his toys on the flat part of the chair seat. I think we really need to build him something like that. The physical therapist did notice that he is tilting his head a bit to one side. Because if this and some of his other gross motor challenges, she recommended weekly PT for him.

Next Nate went to see the developmental pediatrician. The doc asked lots of questions and did a thorough examination of Nate. He recommended that we get a post natal genetic work-up with Nate to see if there was anything else going on w/him and if we were likely to another child with DS. Also the doc talked about accessing more services for Nate. Last, we spent a good amount of time talking about that strange behavior Nate does - mostly when in his high chair. Prior to our visit we shared this video with Angela (http://www.youtube.com/watch?v=dql00S-7sS0) and then she sent it to the docs we saw on Thursday. I guess there was enough concern about the behavior that the doc and Angela wanted us to see a pediatric neurologist. Because we are here an extra day, Angela was able to schedule an EEG this morning for Nate before his eye appointment.

Speaking of our appointments today....we need to get ready! We'll post pics tomorrow.

Nuk Brush

2009-04-22T06:59:00.000-07:00

I feel like I have this running commentary on my life going on all the time in my head. And I think if only I could write that down! Is this just a human characteristic? Are you constantly narrating your life? This chatter would make perfect blogging. So much I want to say...and yet I find it so hard to find time to write. It always sounds so much better in my head too. Maybe that's why I keep it there!

I can't write without sharing something about our sweet boy. So here's a video - Nate lovin' the nuk brush. What a cutie!

9 months

2009-04-12T04:16:00.000-07:00

Happy 9 months Bean!

Before Nate

2009-04-09T18:13:00.000-07:00

It's hard to reflect back to the person I was before Nate. The love I have for him is so overwhelming and scares me at times. I sometimes find myself praying out loud when I am driving -Please please keep Nate safe. Please big truck just stay in your lane...Don't pass me. Just leave Nate and I alone. Inevitably the prayer always ends with -Just please don't ever take him from us.

I can't imagine my life without him.

I don't think I understood selflessness before Nate. God I would do anything for my boy.I sometimes daydream about these awful scenarios in which Nate is in danger. These dreams are so terrible that I don't even want to say them aloud. You probably have had these kinds of dreams before too. I would do anything for Nate. I would give him anything I had.

I am also not sure I really saw (I mean really took the time to notice) people with disabilities like I do now. When I see children or adults with special needs I look for something now...Some kind of gesture or expression that tells me about who they are....what their essence is. Who are you? What is important to you? I am not afraid of what makes you different. What is your story?

I also don't think I really understood what it meant to be present in my life. Boy my days would fly by! Well ...they did before Nate arrived. Now I move from one moment to the next with Nate, never quite knowing where we'll end up. Today I decided to pack up Bean and head into Brattleboro after some snuggle time in bed today didn't result in Nate taking a nap. We ended up walking around (with him in the Ergo carrier) until almost 7 o'clock - This was way past Nate's dinner and bath time. Yes, bad Mommy. BUT we had such a lovey time together. Nate did what I call "mommy worshiping." He leaned his head back and just watched my every move..my every expression. We made funny sounds back and forth to one another. I did my "Oh Boy" surprised look over and over again just so that I could just hear his little grunt of a laugh.

Nate just being Nate is truly the most beautiful expression of what it means to live in the present.

Thank you my Bean for all you have already taught me. I am so glad you're here.

Music Class

2009-04-08T13:23:00.001-07:00

Last Fall Nate and I tried music class. Even though he loves music, the classes inevitably put him right to sleep. Yes these were pretty expensive naps. So today Nate and I tried Music Together again. It was nice seeing familiar faces. So many of the babies we had met were now toddlers. Most were walking - or wobbling around now. Nate did pretty well. He seemed more interested in the other children. He really liked it when the teacher broke out the scarves. Of course Nate was interested in tasting the scarves. After about 4 songs (with various percussive shakers), Nate started to cry. I saw that quivering pout and his eyes just filled up with tears. My poor baby! Was it too much for him? I nursed him for about ten minutes and was able to make it back to the group for the parachute (with glow-in-the dark stars underneath). That was definitely fun!

I think today was a success, but I am not 100% sure. Is music class really good for him or is it something that I want to be good for him? Did he like it?

Well it definitely tired him out. Nate and I came home and promptly took an hour and a half nap together. I love sleeping next to him...His hand was tucked under my chin and his feet curled up between my thighs. Snuggled up tight together. So warm ...so happy.

February 28, 2008

2009-04-07T12:39:00.000-07:00

I recently found a part of a post I wrote the day after we found out about Nate's Down Syndrome. From 2/28/08

Can you tell I am practicing saying it? Last night we got the call we had been anticipating. Little Bean has Trisomy 21. It is so hard to explain all the emotions....... It's amazing how protective I already feel about my little guy - I don't want people to feel sorry for him or for us. I know Bean will bring great joy to our lives and we can make him very happy. We have no doubt. Everyone has life challenges....from parents with cancer, to house fires, to brothers in Iraq, poverty, to drug addiction (this list goes on..)..... This is just our story. So today begins a new journey for us. In some ways, I am still similar to you...pregnant and totally in love with my baby. In other ways, I am on a different road. I have a lot of learning to do.

It's hard to explain where our emotions are now. In some ways we are just new parents who are totally consumed with our son. We take a gazillion pictures of Nate and call to each other constantly to come see one of the million of cute things Nate is doing. We talk about the consistency of peas...what to do for constipation, sleeping through the night and our quest for the perfect sock "booty." On the other hand we are part of a new family --- the world of parenting a special needs child. In this family we celebrate our small and sometimes unconventional milestones (this week it was Nate grunting if we grunted)...We talk doctor appointments and early intervention. We embrace our differences and try to figure out how to navigate this life that has been given to us.

Right now we are still in what we call the "baby" bubble. At nine months, Nate's differences are still perhaps not as obvious to all (unless you are familiar with Down Syndrome). And truthfully, we don't even really know what others see. We just see our beautiful boy -with his big blue eyes, long lashes, beautiful smile, and delicious cheeks. Eric and I know Nate's Down Syndrome will continue to become more visible. Will our way of seeing Nate change?

The beginning of blogging....

2009-04-07T12:09:00.001-07:00

Eric and I have thought about starting a blog for several months now. We hope it'll be a good place to talk about our Nate-Bean and adventures in parenting.

I just love this picture of him.