Saturday, January 14, 2012

"Tut-tut, it looks like rain."

How sweet to be a Cloud
Floating in the Blue!
Every little cloud
Always sings aloud.
"How sweet to be a Cloud
Floating in the Blue!"
It makes him very proud
To be a little cloud.

A couple of days after Christmas, one of our neighbors/friends stopped by the house and spoke with my husband Jacques.
She came by to share the fact that a friend of hers recently had a baby boy who was born with Down syndrome. She and Jacques spoke for quite a while and he told our friend to please share our information, that we would be more than happy to talk with the new parents and share our experience thus far.
Fast forward three weeks, to this evening... Today, this beautiful, Saturday afternoon, was one of complete laziness in the Barbey household! We all slept in, chores were moving along in a very s...l...o...w.... motion. I was the only one to shower today, and yet the hair dooo did the ah-natural drying thing... anyway, you get the picture, a lazy day at the Barbey household! So, come to the end of the afternoon, while I'm thinking of dinner and OH NO! There is not enough creamer for our coffee tomorrow!!!! MAYDAY! So difficult to start your day without creamer in your coffee, whats more, smiling and making small talk with our friends at church... Definitely need creamer!
More information than is needed nor cared about, the story continues on... when I return from the grocery store, Noah is wanting to help me bring the groceries in and then he see's his bike. Lets ride my bike "Moommm". Keep in mind, little guy is still in pajamas from last night, but heck, it's almost 6 pm, the neighbors will think I'm so on it that I've already given my little man a bath and he is dressed for bed for tonight!
So, off we go for the 20 minute stroll around our neighborhood block. 3/4 of the way around the block a black suv pulls up beside us. Turns out she is the mom of our neighbor friend who recently had the baby boy with Down syndrome. So she gets out to meet Noah and we begin to talk. First thing she does when she sees my little man is that she begins to cry. Uh-oh, I knew I should have given him a bath! :) No, I completely understood where she was coming from. Now since my little guy is so damn cute, I still haven't figured out if she was crying because he was so adorable or because he wasn't what she expected of her little man in the future... we'll leave that to the universe.
However, she and I had a wonderful conversation... Jacques came out to meet her as well... and Noah said "bye bye"to her.

This evening had me thinking though, a lot. After Noah went to bed, I decided that he should write a note to his new friend, Peter...

Dear Peter,

Hi! My name is Noah. Your mom and my mom met today for the first time. I found out that you and I have something special in common.

We were both born on very special days... You were born on the Holiest of all days, the Birth of our Lord Jesus Christ! I was born on the Celebration of the Arch Angel day; that makes both of us pretty darn special. Oh yeah, and something else that makes us extra special, we were both born with Down syndrome.

I wanted to share with you what things were like when I was born. I thought by sharing what my parents and sister went through would help you to navigate your family as well through the challenges of the future.. :)

I think that when special gifts from God, like us, come into the typical world, it takes a while for everyone to recognize this gift. That's where you and I come in to show the world that it's awesome to be ourselves, to be special, and to teach the world to accept EVERYONE, even a little cloud!

My mom says that you have five older brother's and sister's... that's awesome! What a gift! You will learn so much just from being with your family every day! I am so blessed to have an older sister too, but she only lives here part time now; she is away at college. I love it when she comes home to visit... she is the best "sissy" ever! I can't wait until I get to go to college too!

There were a couple of things that my parents did to help me to succeed a little easier in growing up and I wanted to share these with you... the first thing was that they had me begin to take special vitamins and enzymes when I was only five weeks old. (I still take them today, as well as others). I only drank breast milk for the first 12.5 months, but my mom would put her milk in a bottle for me mixed with these special vitamins three times a day. Boy, have they ever helped me! I am very healthy, and my body has grown at a typical rate, which makes me and my parents believe that my brain cells are developing and learning really well too!

The other thing that really helped me was that my parents motivated my body learn to move in that perfect "cross pattern" crawl. See Peter, one thing that happens with Down syndrome, and having that extra chromosome, is it makes our muscle tone a little softer than everyone else's. Because of this, sometimes it is more difficult for us to learn to do things, like sit up, crawl and walk, in the typical manner that your brother's and sister's learned. But, your family can help you with this, because learning how to move our body properly is such a fabulous foundation; not only for our muscles, but for our brain connections as well.

I remember my parents, every day, moving my arms and legs in a cross pattern movement. Even though I was only six months old, by doing this movement, every day, it helped to program my brain so that when I was strong enough to begin to crawl, I did the perfect cross pattern crawl! That was the first time I saw my parents cry and scream with joy! They knew that they could help me to learn to be the very best I could be!!!

Some other things that really have helped me learn to grow and develop well is that I am on a special diet. I drink goat milk and eat goat yogurt and goat cheeses. I also don't eat anything with gluten in it. It's really not bad Peter, I mean, this is the only way I've ever known to eat. I don't eat sugar, so I don't know that I'm missing anything.
The thing is, having an extra chromosome in every cell of our body makes everything a little bit more challenging. So, the research that my parents have done has shown that having a diet of simple, natural foods, makes it easier for my system to digest, therefore giving more opportunity for my brain to develop!
What are my favorite foods? Ha! I love anything with a strong flavor... I love kale, spinach, broccoli; the darker the green the better :) I love all fruits and I eat chicken, tofu, and ham. Mom makes rice pasta with vegetables, and I like that too, but I prefer to just eat the vegetables by themselves. My favorite crackers are vegi-booty and snap peas! Yum!!!

Regarding typical developmental milestones, not that we care much about them but our parents sure do... I was able to properly get myself into and out of a sitting position at 13 months. I crawled the perfect cross pattern crawl at 16 months. I was walking by 29 months. I was also reading words by 29 months! I was potty trained at 33 months.

I am currently 5 years old. I attended my first two years of school at a private Montessori pre-school in Phoenix and this year I moved to a school called Montessori Academy in Paradise Valley. This is a private/charter school that goes from Pre-K to 8th grade and next year they will begin to offer grades 9th - 10th as well. (they will be the first Montessori High School in the State of Arizona).

I am in Pre-K, and I have a full time tutor that attends class with me. I am the only child in the school with Down syndrome. I am doing very well :)
I know all of my letters, upper case and lower case and I know all of the phonic sounds associated with them. I also know my numbers/quantitative consistently up to 13 and I am working on 14-20. I love working with numbers and I love to succeed. I have a little bit of a perfectionist streak in often I will watch and observe something until I feel confident enough to try it myself. That may also be partially due to the fact that I am a very visual learner, as most people with Down syndrome are.
I have so many friends at school, I just love going there every day!

Right now I am attending Pre-K part time, 8:30 - 11:30 - next year I will probably repeat Pre-K and go full time to ensure I am truly ready for Kindergarten when I am 6.

Every day after school I have something special that I get to do. I go to speech therapy four times a week, but that is because I also have Verbal Apraxia. Don't worry Peter, this has nothing to do with having Down syndrome, I just got a lucky dual diagnosis... It is a motor processing disorder, meaning that I understand everything that is being said to me, I just have difficulty expressing myself verbally. But I am blessed that there is an Apraxia specialist in the State of Arizona out in Chandler, and my mom takes me to her almost every day.
I also get to ride horses once a week; that helps me with my balance, my core strength and my speech. I get to do a tumbling class once a week; that helps me with my coordination. I also swim twice a week in the spring through fall, which helps me with my physical strength as well as my processing skills.

My favorite passion Peter is music!!! Oh my goodness, I remember my first Music Together class when I was only six months old... music makes my heart sing! I love to play the guitar, play the drums, and soon I will be taking piano lessons. I love to dance and listen to all kinds of music. Mom and Dad play classical music all the time and I love listening to the different instruments! I also love books and playing with my iPad!

However, one of my greatest passions is my family! I love to hug and kiss them, make sure they are happy and smiling, and to help out whenever I can!

I am so happy to have another friend like you Peter! Even though we are five years apart, we are like twins in the eye in dinosaur time! I can't wait to meet you and have our mom's become good friends!

And always remember... How sweet to be a cloud, floating in the Blue, a cloud that defines a Friendship, a special bond between Me and You!

In peace and friendship to you,

Noah Bryce Barbey xoxo

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