Warming up Party

Well, the Special Olympics' Polar Bear Plunge was postponed to next week due to inclimate weather, but we still had the warming up party today! It was a great time to get everyone together for raising over $30,000 for the Special Olympics of NJ and the total is still climbing! I will have more pictures to post later, but for now, I'm too tired....

National Down Syndrome Congress - We're More Alike

Awhile back, Monica at Monkey Musings wrote a post about the National Down Syndrome Congress' We're More Alike than Different poster campaign. The poster campaign allowed us to create a poster spotlighting our children in a way that we felt depicted them best. Colin's poster was titled "Who Likes to Smile More, You or Me?"

Well, the National Down Syndrome Congress has listed these posters that were created in their gallery and is starting a vote! If you visit the page, you have the opportunity to vote on your 3 favorite posters and those selected will be made part of the We're More Alike campaign by mid-summer!

To vote:

1. Go to the National Down Syndrome Congress' More Alike Poster campaign headquarters and click the link to view the gallery.

2. Colin is #75!!

3. Once you have selected your 3 favorite (colin is #75!), go back to the headquarters home page and under Pick a poster click the link for cast your vote here.

4. Some of Colin's blog friends are there too! Lila is #42 from Lila's Miracle Life and John Michael #66 from Monkey Musings!

Did I miss any?!

You have until April 1, 2010!!

Aimee Mullins: The opportunity of adversity | Video on TED.com

My friend Leslie shared this video with me regarding adversity. The talk was done by Aimee Mullins who was born without fibular bones, and had both of her legs amputated below the knee when she was an infant. She learned to walk on prosthetics, then to run -- competing at the national and international level as a champion sprinter, and setting world records at the 1996 Paralympics in Atlanta. At Georgetown, she became the first double amputee to compete in NCAA Division 1 track and field.

It gives lots of interesting perspective to words that are used to describe someone, including the use of the word disabled.

Aimee Mullins: The opportunity of adversity Video on TED.com

A Grandparent Kind of Love

Nobody can do for little children what grandparents do. Grandparents sort of sprinkle stardust over the lives of little children.

-- Alex Haley

Colin is one lucky little boy because he has a Nana, Grandad, Gammy, Grandpa, a Great-Grammy, Great-Grandma and a Great-Poppy, plus pseudo-grandparents with a Mema and a Penka!! If only we could all be so lucky! There is something very special about the bond of a grandchild and a grandparent.

I have very fond memories growing up because I got to see my grandparents all of the time! They are all very special people in my life and I am still fortunate to have 3 of my 4 grandparents! My Pop-Pop passed away when I was in 5th grade but I had a special love for him as well.

Colin will grow up knowing his grandparents and great-grandparents very well and will have very special bonds with them, just like I do with mine...They have all been so supportive of Colin in his short 10 months of life. Thank you Nana, Grandad, Gammy, Grandpa, Great-Grammy, Great-Grandma, Great-Poppy, Mema and Penka!!

My parents, Colin's Nana and Grandad

Chris' parents, Colin's Gammy and Grandpa

My Mom's Mom, Colin's Great-Grandma

My Mom's dad, Colin's Great-Poppy

My dad's mom, Colin's Great-Grammy

Colin's pseudo grandparents, very special people to me, Mema and Penka (not pictured)

The history of our grandparents is remembered not with rose petals but in the laughter and tears of their children and their children's children. It is into us that the lives of grandparents have gone. It is in us that their history becomes a future. ~Charles and Ann Morse

Colin is 10 Months Old!

Colin is 10 months old today! I feel like I just wrote the post saying he was 9 months old! It's amazing how fast time goes by!

Unfortunately, Colin's day was overshadowed by a quickly moving stomach virus that hit us yesterday and is lingering around today. Fortunately (knock on wood), Colin has been ok so far aside from less of an appetite the past few days. Let's hope it stays that way! So, Colin and I went for a quick walk around the neighborhood because fresh air always does good when there are pesky germs around.

As Colin is nearing his 1st birthday, we have been trying to transition him into more "adult" and solid foods. To be quite honest, this is not going well at all. He is having trouble with textures including puffs, yogurt melts, cheerios, fruits (occassionally he does ok with banana, peaches and pineapple), vegetables, etc. I think we jumped too soon into trying feeding him actual chunks, so I started putting vegetables and fruits in the food processor and leaving them with texture but not as much as if you were to give him a piece. He will do better with this, but still not great.

When he doesn't want something, he blows raspberries so hard he spits it right out of his mouth. Let me tell you, this gets old real fast.

We are also transitioning him into drinking from a straw and practicing with the honey bear cup.

Colin does not like this either and will often complain and push it out of his mouth. We also started trying a small juice box (with a smaller straw) and he will do better with this. Practicing this only lasts a few minutes at a time but we are working on it.

Other things we are working on:

- Getting Colin to start rolling from back to tummy again.

This was a skill he did months ago, but one of those skills he never really did again after a few days. We find so many different ways to motivate him and have seen him do it more often the past week, but it still occurs pretty sporatically.

He loves this ball that Meredith, Mo and Tim got him. It's the "crawling" ball, so it's supposed to be motivating to get the baby to start crawling to it. For now, it's been helping to motivate Colin to roll towards to it.
- Getting Colin up onto all fours so that he will eventually be able to crawl.

This is something that Colin is still lacking the strength to be able to do efficiently, but we find as many moments as we can to "lift" him under his pec muscles onto all fours. We find that a lot of times, we get him to do this if he is on our chests looking at our face. I am hoping this is a skill Colin will accomplish by his 1st birthday, but I will not feel too upset if it doesn't happen because he is trying and working towards it.

You can tell that Colin wants to go and start moving, but he just doesn't have the strength. His attempts at crawling actually resemble a fish out of water...flopping all over the place. I'll have to get a video of that one of these days.

- Imitation

We try to get Colin to imiate as many things as possible. Examples of this include sounds, mouth movements, kissy faces (we LOVE that he will "kiss" us now when he looks at us), tongue clicks, clapping hands, clapping blocks together, "making music", etc. Here is a video of Colin imiating "shaking". He loves to do this with his new "music making rattles" that make different sounds. In this video, he is using his octopus tamborine to imitate sounds.

Here we all are making "music" together shaking our instruments.

- Practicing fine motor skills and pincer grip

Even though Colin won't necessarily eat these kinds of snacks, we still practice with them so that he works on picking them up with his thumb and index finger.

Colin enjoys moving things around his tray or picking them up in the palm of his hand, but occassionally, you will catch him picking them up the correct way.

It cracks me up when a cheerio will get stuck to his finger and he will just sit there and inspect it.

- Identifying facial features

Colin enjoys pointing to 3 main features on our faces right now: eyes, nose and mouth. Every time he does, we make sure we say the feature clearly and then help him point to that feature on his own face. Here you can see Colin pointing to the frog's eyes.

- Reading

Miss D told us that she learned you should read to your child for 30 minutes every day. Colin enjoys books and recently we pulled this one out. It's called Olivia and was given to us as a present when Colin was born by a local elementary school.

We are working on pointing to specific things on the pages with his index finger and emphasizing different sounds when we do that.

- Identifying people in pictures

One night I was sitting at the computer with Colin trying to get Daddy on skype. Colin looked up and saw the big picture of Chris and I that our guests signed on our wedding day. Colin was getting so excited squealing and making noises. Now, if I hold Colin up to the picture and say "where is daddy?", Colin will put his finger on Daddy. If I ask "where is Mommy?", Colin will point at me! It's so exciting to watch him do that.


We are working on a lot of things, but most especially, we are showing Colin how much we love him.

Happy 10 month birthday Colin!

Last Weekend

It's about time! I have started this post several times, but other things have kept me from finishing...

We had a kind of long, extended weekend last week between the snow and the holiday on Monday. Because Colin hasn't been taking very good naps lately, during the snow days we decided to start changing them around a little bit. We tried keeping Colin up all morning, eating lunch and then going down for a nap after lunch. However, this is what ended up happening:

Colin would fall asleep DURING lunch. We are still trying to avoid the morning naps, unless Colin falls asleep in the car on the way to school. It still hasn't made the afternoon naps any longer though. I honestly think Colin doesn't want to miss anything.

He had his Valentine's Day party on Friday at school and he brought ice cream cups for everyone! He had filled out his Clifford Valentines for all of his friends and was so excited to hand them out! Unfortunately, Colin actually slept through his party. Here he is getting ready for his party...

Can't you tell how excited he was? I think he was just excited to see his girlfriend Allison.

On Saturday, we went up and visited with Colin's cousin Penelope. Penelope's daddy is my 1st cousin and Penelope's mommy and I planned a day of relaxing and chatting. We all had so much fun!

Colin and Penelope got along so well with each other sharing toys and getting to know each other better.

Colin really enjoyed touching Brian's beard and Penelope was so nice to share her Daddy with Colin.Samantha gave Colin lots of great Mommy snuggles just like she gives Penelope. We were so lucky to have such a fun, relaxing day!That's where I learned how much Colin loved this toy!On Sunday, we got to see Rob and Corinne! We haven't seen them since the SUMMER! (GASP!)

We met up at Surf Taco where we had a yummy lunch!

Then we had some yummy ice cream!!

* I'm not so sure that colin enjoyed the ice cream *

There were LOTS of smiles to go around!

When we got home, Colin helped Daddy get his work done. Colin read the info while Daddy typed.

But then Daddy needed a little bit more help putting the information for the game programs into the computer.On Monday, Nana and Grandad stopped by after driving 8.5 hours from visiting Uncle Timmy in North Carolina! They came all the way to see Colin and then still had to drive another hour and a half to get home! They needed their hugs and kisses!

After they left, it was a little bit more playing with his new toy......and then put a fork in him, for he was done!

Living in the Moment

I have been thinking a lot the past few days about the pressures we have to make sure that Colin "does his homework" on a daily basis so that we can continue to help make him stronger. I often get myself so worried about days when he complains and it's just impossible to work on the specific things we need to or when life happens and there just isn't enough time in a day to do everything we need to practice.

Colin and I went to visit our cousins on Saturday (more on that later) and Colin's cousin Penelope had a toy that he got so excited about and was so curious to touch different things and try them out. So, I used a gift card and went out and bought it on Monday. I was worried that I would bring it home and Colin wouldn't be as interested, but low and behold, he LOVES it. I was sitting there watching him this morning thinking how happy he was and how curious he was about this new toy. I kept trying to put him on his hands and knees to practice the crawling skills, but he wanted nothing to do with it today. So I let him just play and be happy and that he was...

So while I have been sitting here at work catching up on blogs (and once again, not doing what I should be doing) I came across this website about the I'm Down with You Project, thanks to Chrystal at One More, More than One. I read through the whole thing and was so moved. These pictures are some of the most beautiful pictures I have ever seen and I think the project is amazing.

At the end of the website there is a link titled "video" and it is behind the scenes footage of the documentary "I'm Down with You". I watched this video again and in it, heard something I had previously missed. Jagatjoti Khalsa describes people with Down Syndrome as individuals that "live in the moment".

And so I realized...sometimes, we need to just play and be happy in this moment and not worry about what we should be doing. That's what Colin tells me some times. "Mommy, let's just play and be happy".

Something to Share...

Chris received this forward today from one of his friends who specifically sent it for him also with the intent to share it with me. I was very touched by the thoughfulness and appreciated the words to it. Here it is:

Subject: A Newborn's Conversation with God

A baby asked God, "They tell me you are sending me to earth tomorrow, but how am I going to live there being so small and helpless?" God said, "Your angel will be waiting for you and will take care of you."

The child further inquired, "But tell me, here in heaven I don't have to do anything but sing and smile to be happy." God said, "Your angel will sing for you and will also smile for you. And you will feel your angel's love and be very happy."

Again the small child asked, "And how am I going to be able to understand when people talk to me if I don't know the language?" God said, "Your angel will tell you the most beautiful and sweet words you will ever hear, and with much patience and care, your angel will teach you how to speak."

"And what am I going to do when I want to talk to you?" God said, "Your angel will place your hands together and will teach you how to pray." "Who will protect me?" God said, "Your angel will defend you even if it means risking its life."

"But I will always be sad because I will not see you anymore." God said, "Your angel will always talk to you about Me and will teach you the way to come back to Me, even though I will always be next to you."

At that moment there was much peace in Heaven, but voices from Earth could be heard and the child hurriedly asked, "God, if I am to leave now, please tell me my angel's name." God said, You will simply call her, "Mom." (and I think it's important to put Dad in here as well)

We're More Alike Than Different The Documentary

I am on the mailing list for the National Down Syndrome Congress and received this email today. The campaign is working hard to spread awareness and asks that we spread the word, as I am choosing to do today by posting this to the blog.

From the National Down Syndrome Congress:

Busting Myths about People with Down Syndrome Begins with Us: Let's Get Started

As a community, one of the biggest - and most frustrating - challenges we face is dispelling or combating myths about people with Down syndrome. Once upon a time, we had to change attitudes one person at a time, but, thanks to the Internet, there's a better way.

In fact, with the emergence and popularity of social networking, we have the power to reach hundreds, even thousands of people with just one well-crafted message. It's called viral networking and it has changed everything.

The National Down Syndrome Congress is poised to enter the world of viral networking to take advantage of its power to reach a huge audience at virtually no cost. We have a serious story to tell and people need to hear it.

Our goal is to get people's attention, and then encourage them to forward our message to others. We have the tools to make this happen, but we need you to make it work. Done right, the results can be dramatic. We can bust a myth a month.

In every edition of the Communicator, we'll provide a link to an article or video covering a different topic related to people with Down syndrome. The subject matter will vary and most will be targeted to a specific audience, such as educators, physicians, human resource professionals, school board members, local and state governmental leaders, etc. You can then forward these emails to friends and family members and others you think might benefit from viewing them. Just remember that you don't need to email everybody, every month, so be selective when choosing your recipients and respect their inbox.

Working together, we can make some myths fall in 2010. And, we're ready to get started.

Myths that have to compete against NDSC's highly acclaimed We're More Alike Than Different national awareness campaign don't stand a chance. That's because it tells the truth about people with Down syndrome and that changes minds.

...and the Light Shines In!

I grew up going to church every single Sunday for as long as I can remember. I was baptized as a baby, made my confirmation in 8th grade, and went to Sunday school. While I was in college, I usually only went if I was home for the weekend or during holidays. My family sat in the same section with my Mom's parents, my mom's aunt and uncle, my dad's mom, my mom's sister and her kids, and my mom's other sister sang in the choir as did my dad's dad before he passed away. My parents were married in the church and grew up going to Sunday school there as well. As you can see, religion always played a role in my life.

When Chris and I met and eventually got engaged, our initial plan was to have our ceremony on the bay in Lavallette at the gazeebo that I loved so much at sunset-ish in the summer. However, with different things not working out, worrying about the heat, and me starting to have that feeling that I would like to get married in a church, we slowly started to change our mind. We decided that we wanted to start going to church again and find our own place where we would be comfortable. We showed up on Christimas Eve morning in 2006 and fell in love. The church is just BEAUTIFUL with light shining in all of the large stained glass windows. We loved the Pastor from the 1st day and just knew that was where we wanted to start our family. We slowly found our "niche", had a beautiful wedding ceremony, and then Colin's baptism.

I love having Colin there with us now. He is so loved! Sometimes when we are there with him, I wonder what he "sees". He looks around and just smiles. He loves the music, especially when we all sing together. He looks around at the beautiful windows and the light shining in. And he smiles some more...
This weeks sermon had a lot to do with whether or not you are "listening" and "seeing" when God is speaking to you. Pastor Bill referenced "climbing the moutain" from Matthew 17 where Jesus takes disciples to the top of the mountain. I was thinking a lot about my own life with Colin and how when I found out that Colin had Down Syndrome I surely did not want to "listen" or "see" what God was telling me. Chris and I were put on top of a mountain and exposed to the elements. We couldn't look past the Down Syndrome at first.

But I do listen now...and I "see" it. Colin was our gift meant just for Chris and me. We see so far beyond the Down Syndrome. We can see and hear every single day as Colin teaches us new things and tells us to slow down and be patient. We see and feel God's love from the unconditional love of our child. The sun may not always be shining bright on top of that mountain, but we will keep climbing and slow down to listen and see.

Valentine's Day Party

...and the lil' guy slept through his whole Valentine's Day party!!

When Daddy got there to pick him up, this is the happy, well rested face that greeted him. No need to worry, he still got to try some of the party foods, including the ice cream which he LOVES. He also brought home a little bag of Valentine's from his friends AND made his Mommy and Daddy a GREAT card!

Kiss! Kiss!

My lil' boy is ready for his Valentine's Day party today! Isn't he just so handsome?

...melts my heart!

Special Olympics of NJ Young Athlete Program

One thing my parents have been saying to us since the beginning is that Colin was going to "make a difference". We are proud because Colin HAS been making a difference by increasing awareness among friends and family about Down Syndrome. Because he is loved, people have become more educated, are attempting to erase stereotypes, use terminology correctly and have become involved.

This is clearly evident by ALL of the people that have joined CAT Crew, donated money and time to the Special Olympics, and simply just supported us. To date, we have 48 team members and have raised $26,112. We are honored that people have supported us and the Special Olympics the way they have.

I am thankful for this support because through this, I received an exciting email this week. Kathy Edenzen, the manager of the Young Athlete Program of the Special Olympics of NJ contacted me. She saw how well CAT Crew was doing, found Colin's blog, and contacted me to spread some information regarding the Young Athlete Program.

Here is a piece from her email:

"The Young Athlete Program (YAP) was created in consultation with the University of Medicine and Dentistry of New Jersey, to meet the physical and developmental needs of children, ages 2 ½ to 7, in the areas of physical activity and play, with an emphasis on sports skill development. The activities presented in the program are designed to develop the fundamental prerequisite skills to prepare athletes for future participation in sports. The program includes user-friendly instructions and a complete kit of sports activity equipment. The design of this program provides flexibility for the parent, sibling, paraprofessional, teacher, and volunteer to conduct activities. The Young Athlete Program is designed to be used by parents in the home and can be used in a preschool / school environment, playgroup or one-on-one situation. Enrollment in YAP provides a kit with activity equipment, an activity guide and DVD all free of charge."

I wanted to share this information with all of you because personally, I think it's wonderful! I know that Colin will not be using some of these pieces of equipment just yet, but they are things that we can all grow into as Colin grows and develops. We can begin to work on sport specific skills so that one day, Colin will be ready to participate in different sports activities. I know that a lot of you live in different states, but I am in the process of finding out more information for you regarding the Young Athlete Program.

In the meantime, you can get more information by clicking here. I have not quite figured out how to attach documents to my posts, but this link will take you directly to the Young Athlete Program page through the Special Olympics of NJ website. On this page, you will find information regarding registration forms and activity guides for the program. It's an exciting opportunity!

Rob Johnson on the R-Word

I'm so glad this video was posted on some of the blogs that I read because I was thankful that Rob Johnson did this piece on the "R" word.

What he says is so true...

Superbowl Sunday

We had a fun day at our house for Superbowl Sunday!

Colin spent the morning playing with his toys.

When it was time for his normal nap, he cried and cried and even after many attempts of head rubbing, he still did not sleep. He must have been so excited that his friends were coming over!

The Gallagher family came! Colin got lots of quality time with Jorie...

...he even fell asleep on Jorie but that only lasted about 20 minutes and then he was up and at em' again!

..and play time with Zach.

He snuggled with Kaia (do you catch the wink he's giving her in this picture?)

And played with his buddy Liam!

Later Leslie and Simon and Meredith and Tim came over...

Colin asked Leslie to feed him his dinner...

Played with Meredith...
Tried out wrestling moves with Simon...

..and then just couldn't stay awake one more minute.