Colin's Part in a Global Initiative



At the end of last week, we received a call asking if we would be interested in speaking at a meeting at the Special Olympics International Headquarters in Washington D.C. about Colin's involvement in the Young Athlete Program.  The meeting would involve numerous members of the Board of Directors, including Tim Shriver and Kim Samuel, former president of the Special Olympics of NJ Marc Edenzon, other Special Olympics staff members, and another family who would be speaking as well. We were so honored to be asked to share our story about Colin's involvement in the SONJ Young Athlete Program which allowed him to develop his skills and then subsequently participate in the community soccer program as well as Karate.  We jumped at the chance and drove down on Sunday night, stopping once to wake Colin up, for us to get some dinner, and Colin a treat.

 

 

We explained to Colin that we would be staying in a hotel and then attending a meeting where he would talk about the Special Olympics and see his old friend Mr. Marc. He was excited to have a packed suitcase and an adventure with both Mommy and Daddy.

 



It was a long ride down but there was so much excitement surrounding the trip, especially because we would all have the opportunity to speak to some very influential people in the Special Olympics unified sports movement. This movement is all about having sport bring together people of all ability levels in a fun way to break down barriers and stereotypes for those with disabilities.

 



 

We arrived at the hotel pretty late, but Colin was so excited and brought his suitcase all the way from the garage up to our room by himself (he was very adamant about doing this too). The suitcase became the thing Colin was obsessed with during the entire trip. When we left for the meeting the next day, we would walk a ways and then he'd stop and say "Wait! My suitcase! Let's get it from the hotel!". We'd have to assure him that his suitcase was safe.  At one point during the meeting when the other family was talking, Colin leaned over to me and whispered "Mom! My suitcase! We need to get it from the hotel!". I once again assured him that it was safe.

 



The next morning, we met Marc across the street for breakfast so we could be briefed a bit on the goal of the meeting and then walked around the corner to the Special Olympics International Headquarters with our buddy Logan and his mom Julie.

 

After arriving, we had the opportunity to tour one floor of the offices and meet some of the staff as we awaited the start of the meeting.

 



The focus of the meeting was on Kim Samuel and her significant contributions to the Special Olympics organization, particularly to their work in the unified and young athlete programs. These contributions have allowed the movement to work with and train many families in countries throughout the world to combat the stigma and isolation associated with people with disabilities. This movement is working to make these areas more unified. During the meeting, Chris and I spoke about our journey since Colin was born through not knowing about his diagnosis, our involvement in the Polar Bear Plunge, and then Colin's participation in the Young Athlete program.  We described how this program allowed Colin to build upon skills starting at the age of 2 which ultimately allowed him to be able to participate in the community sports programs that he is now participating in. We talked about how we feel about inclusion and they asked questions about our current battles educationally in including him. They found this particularly baffling considering the work and progress the movement has made across the world, particularly in African villages. Yet here we are in NJ facing significant struggles. We were so proud of Colin because he also talked about the sports he really enjoys.  He shook everyone's hands on the way in all the way around the table and was so well behaved during the meeting.  He sat with us at the table, listened intently and answered questions when asked. He did awesome! Julie and Logan also spoke about their journey during the meeting as well. 

 

It truly was an honor to play a part in such a global initiative and we must give Kim Samuel a big heartfelt thank you for HER role in this movement.  It truly was an amazing experience.

We are SO PROUD of this little man and the many successes he has already had in his short life. It's amazing that Colin can sit in a board room, extremely well behaved, speak to many influential adults in a large room yet "he can't be educated in a general education classroom". I must be missing something...

Due to limited time after the meeting was over, we went back to the room to get changed (and assure Colin his suitcase was still there), took a quick walk to the closest landmark which was the White House, snapped a few pictures (we couldn't get very close), and then grabbed lunch with Logan and Julie before getting back on the road to NJ.

 



Whatever it is that Colin chooses to do with his life, Chris and I will fully support him but we want him to know that anything is possible. We work so hard to make sure that Colin always knows that and will continue to do so no matter how many roadblocks we face.  We are so proud of the Special Olympics for their efforts for all of those with disabilities in working to change attitudes. This was an amazing opportunity for all of us and we are so thankful!

 



On Being a Mommy

When I think back to some of my biggest accomplishments growing up, the things that come to mind are mostly related to the grades I earned while in school and how hard I worked to get two different degrees that allowed me to work in two different fields.  There were some bigger defining moments like meeting Chris and marrying him, but prior to children, my life was just different.  

 

Now, after children, my life has become defined by my 3 most meaningful accomplishments who have made me the Mommy I am. I think when you become a Mom, you realize just how resilient you really are and what you can do when little lives are depending on you. I still look at pictures sometimes of the three kids and am amazed that I am the Mom of 3 children.

 

Each one of them has brought something so different to my life and caused me to grow in ways I never knew I could.

 

This mother's day, I am thankful for 3 little people who depend on me, who need me, and who make me feel like I am one of the most important people in the world. 

 

I am also thankful to my own Mom, and all of the other women in my life (Grandmas, mother in law, sister, sister in laws, pseudo moms, aunts, cousins, and friends), who have inspired me to be the kind of Mom I am today. 

 

My mom has always been there for me, for Chris, and now for Colin, Kailey and Cody. She has always gone above and beyond for all of us and loved us all unconditionally. There are so many other women in my life who have also been role models and been there to help me be the person that I am.

 

Garth Brooks: "Mom"

Little baby told God, hey I'm kind of scared.
Don't really know if I want to go down there.
From here it looks like a little blue ball
That's a great big place and I'm so small.

Why can't I just, stay here with you?
Did I make you mad, don't you want me too?
God said oh child, of course I do
But there's somebody special waiting for you

 

 

So hush now baby, don't you cry
'Cause there's someone down there waiting whose only goal in life
Is making sure you're always gonna be alright
A loving angel tender, tough and strong
It's almost time to go and meet your mom.

You'll never have a better friend
Or a warmer touch to tuck you in
She'll kiss your bruises, your bumps and scrapes
And anytime you hurt
Her heart's gonna break

So hush now baby, don't you cry
'Cause there's someone down there waiting whose only goal in life
Is making sure you're always gonna be alright
A loving angel tender, tough and strong
It's almost time to go and meet your mom.

And when she's talking to you make sure you listen close
'Cause she's gonna teach you everything you'll ever need to know
Like how to mind your manners, to love and laugh and dream
She'll put you on the path that bring you back to me

 

So, hush now little baby, don't you cry
'Cause there's someone down there waiting whose only goal in life
Is making sure you're always gonna be alright
A loving angel tender, tough and strong
Come on child it's time, to meet your mom

Happy Mother's Day to all of you Moms out there, and all of the people who are like Moms to special kids you know.  Don't forget that you are a special kind of superhero...

 

 

Advocating for a Bright and Successful Future

Prior to having Colin, Kailey, and Cody, Chris and I had discussions about the kinds of things we hoped for and the expectations we had for our kids' futures. Each time we got pregnant, we imagined what their lives would be like and how they would change ours. 

 

When Colin was born, it felt like his future wouldn't entail what we expected but we very quickly learned that wasn't the case.  We have raised and supported Colin in all of the ways we know how so that he knows he is capable to be and do whatever it is he wants in his life.

 

We have become Colin's biggest advocates when it comes to educating him in an inclusive classroom because we truly believe that when exposed to the same curriculum, learning alongside his peers, in the same way they are, he will be just as capable to be successful.  It is no secret that because of the differences between Colin and his peers developmentally, he needs more support to get to the same places his peers are headed. We are advocating because we have seen evidence over and over again that shows that when you believe someone is capable, very simply, they ARE.

This year has been a very trying year for us because of the limits that have been placed on educating Colin. Sadly, we are not alone in our struggles and are finding that despite the research that has been supporting inclusive education for decades, in addition to the LAWS that support educating students in the least restrictive environment, many families are faced with school districts that still segregate their students with disabilities and place limits on them.

 

It has taken me a week since reading the post "They Wash the Football Team's Uniforms" written by a friend at the blog Big Blueberry Eyes to share and post about the content of the post. Her post left me feeling so sad and discouraged that I was unsure how to adequately share my feelings on the issue. I urge you to read it because I don't think I can appropriately convey how I feel about this and she does an excellent job in it.

 

The gist of the post is that during an IEP meeting in preparation for her daughter's transition to middle school, they learned that the self contained classroom she would be spending most of her day in (more restrictive than her setting up until this point in her education) was formerly the home Ec room in the middle school.  Therefore, because of the functional kitchen, they sometimes learn how to cook (not part of the curriculum for the general education students). These students do not receive their own lockers like the rest of the students. And even worse, because of the washer and dryer in the classroom, "sometimes they wash the football team's uniforms. They learn how to measure and do laundry, and the football team gets clean uniforms and it's....great!".

 

I'll let you absorb that one for a moment.

 

Just like she did, I would like you to now imagine asking your typical child how they would feel if ONLY their class in the school was responsible for a task such as washing the uniforms of the football team. Imagine that ONLY their class needed to complete a chore that no one else in the school needed to do. And now I want you to imagine how your typical child would feel if ONLY their class did not receive a locker to decorate and store their supplies for the day like the rest of the school did. I am sure they wouldn't feel good about the fact they had to do chores other students did not need to do and did not receive things like a locker that the rest of the school got.

 

So why is it ok for students with disabilities?

 

Every day, limits are placed on people with disabilities. We are advocating for Colin because we BELIEVE in him.  Just because it may take someone longer to get to the end point, doesn't mean they CAN'T do it. Belief is a powerful thing...

Fist Bump

On a typical morning, I am the first one up shortly followed by everyone else. By the time I leave for work, everyone is pretty much dressed and basically fed.  Thankfully, Chris' schedule allows him to put Colin on the bus and then drop Kailey and Cody off at school before heading to work himself. It makes for a less stressful morning for me. Once in awhile, when he is traveling for work, I am on my own (or have to seek out help from my sister). Because of my later start time this year and Colin's bus schedule, I technically can put him on the bus and drop the other two off if necessary; it just makes my arrival time at work cutting it within minutes of when I am supposed to be signing in by. Today was one of those mornings where I was on my own and had to make sure everyone got where they needed to go.

 

I posted this picture after I finished dropping everyone off this morning because I felt like jumping in the air and fist bumping for a pretty successful morning.  I felt so proud that I got everyone up, dressed, fed, lunches packed, myself ready, the car loaded, Colin on the bus, the kids to daycare, and myself to work with 3 minutes to spare.  It was just one of those days where everyone was cooperative, I hit every green light, the bus was on time, and drop off went smoothly.  I was so thankful for that (and even MORE thankful I don't have to do this every day!).

Some days I feel like crying because the day is so overwhelming and stressful and nothing is going right...

...but then there are the days like today where I could cry because everything DID go right and I'm just so thankful. From wakeup to bedtime, it really was a good day. So, fist bumps all around for that!

Independence

This morning turned out to be a pretty challenging morning, but not for the reasons you would think. In the midst of getting lunches packed, bags ready for school and getting myself ready, Colin decided that he needed to get ready so that he could go to "Karate, BlueClaws, the pool, and then school". Although I had already had a shirt on him for school, he got another shirt on over that, his pants on, one shoe, and Kailey's BlueClaws hat. We kept telling him over and over again that he wasn't going to any of those places, just school, but he was working really hard to convince us otherwise. 

 

Once he was dressed, he made his way to the bathroom where he appropriately loaded up his toothbrush with toothpaste, brushed his teeth, and then went to the bathroom.

Once he was done with that, he got Kailey's backpack and kept telling us where he was going.  I went to go and get changed for work when I heard the front door open and so I had to throw on a shirt and go and remind him that he wasn't actually going to the BlueClaws and he could only go outside with us.  I finished changing and when I came out, he had on a different pair of sneakers, socks on and was loading up the backpack with more items.
 

 



He was really read to go once he had the Spiderman wrapping paper in the bag and then he was off.

 

 

 

We are so proud of this newfound independence that Colin has been finding lately (although it's not always easy) because a lot of these things he's been doing have taken him awhile to get here.  What's exciting too is that these are things he really wants to do; they are things he is really working really hard at so that he can do them.  



 

"Take your child to work day" at my school

We are so proud of this guy (although it did make for a challenging morning!).

Happy 6th Birthday Colin!

 

Today, our beautiful little boy turns 6 and it's hard to believe that our once tiny little guy is turning into the handsome, happy, talkative, active, and funny boy that he is.  We were profoundly changed the day he entered into our lives and because of him, we will never be the same. While we have spent the past 6 years watching him grow and change, we have also been changing ourselves. We have learned what it means to be patient, to appreciate everything (even the little things), and to fight for what's right for Colin even if it means it is emotional and hard for us. We believe in Colin, we know he is capable of anything, and we will ALWAYS make sure he has every opportunity to shine. 

 

In the past 6 years, Colin has come so far and has really been making some big gains in the past two months.  He is talking in full sentences most of the time and when we don't understand something he is saying, he tries really hard to make sure we do. He has come a long way since the school year started in terms of math concepts and counting and is working really hard on learning sight words and other literacy concepts.  He has also been writing with improved strength and coloring within specific boundaries. These were things that were extremely challenging at the beginning of the year.

 

While Colin is social and happy and willing to talk to most, the skills needed to have a prolonged conversation and actively play with other children have been slow to come, but they have been coming. His biggest teacher for this has been Kailey along with his classmates from school. He is learning social rules and boundaries and has made a lot of progress.

 

He has always been active, but this year he has picked up Karate and now soccer.  At home, he is constantly asking to play some sport activity like baseball, basketball or soccer.  He is also always choosing sports on TV over any of his other favorite shows. His common phrase to us is "will you play ____ with me" and it's typically some sport activity he's asking us to play. He is riding a big boy bike now and while he is wobbly, he will only get better from here.

He has always been, and continues to be, a learner through observing.  While it may not seem like he is participating, he always watches first and then will eventually try whatever it is he is watching. He doesn't always feel comfortable or confident to try anything he is unsure of, but that's why observation is so important for him because he just needs time before he is ready.   

 

That is the key for Colin...he just needs TIME and he will be ready.

 

We have been enjoying his sense of humor and the laughter that fills a room when he is happy. He is one of the most polite kids you will ever meet as he uses his please and thank yous for everything he does and asks for. Just the other day at his birthday party, he got Chris' and my attention while he was eating his birthday cake and said thank you to both of us.  He wasn't specific on what he was thanking us for, but in that moment, Chris and I knew he was happy.

We have learned SO MANY things this year because of Colin and we will continue to learn for him. We are so thankful for him and his love and for the extra dose of special he has brought to our lives.

 

Happy 6th birthday to our beautiful little boy...we love you more than words can describe! 

 

Cody is 7 Months!

Every time I sit down to write one of these updates, I immediately want to say things like "I can't believe Cody is 7 months old" or "time is flying by" because it is! Our little man is no longer the baby that he JUST was not that long again.  It's also amazing to me how much he is changing so quickly.  It feels like we go through little lulls and then all of a sudden, he hits a spurt where so many things are happening at the same time. 

 

A little bit after Cody turned 6 months, we took him for his well visit (actually, it was probably closer to his 7 month birthday) and he weighed in at 18 pounds and 27 inches long.  He is our biggest baby at this age and he feels quite solid! We were expecting to get his 6 month vaccines however, we learned that he had an ear infection (first one ever in our family!) and so we are still waiting for to get those.  

In the past month, Cody has become quite mobile in that he is rolling farther distances and when he is on his stomach, he is scooting himself backwards.  He hasn't quite figured out getting onto his knees yet, but we are TOTALLY ok with this because we aren't quite ready for him to be more mobile. He also just started sitting independently in the past few weeks so overall, that has made him happier because he can interact more and see everything he wants to see. 

 





Overall, his demeanor is pretty happy and easy going, although he does have his moments.  He is almost always smiling (even when he had an ear infection that we didn't even notice!) and his laugh is quite infectious when he being tickled or entertained by Colin and Kailey. He LOVES when Colin and Kailey play with him and it almost looks like he's trying to get in on the action the way he watches them so intently sometimes.  Some of my most favorite times are when the 3 of them are all giggling at each other in the backseat of the car.

 



He is babbling and making different sounds quite a bit, but the most popular babble is "dada". He makes noises when he is content and eating to the point I can almost hear him saying "mmmm, this is so good". He is an excellent eater and we are very slowly introducing him to different types of textures and table foods.  He has tried ice cream a few times and smacks his lips to get every last drop off of them.

 



His fussiest time of the day is the end of the day and that is typically because he is tired and ready for bed by 6:30. That makes it challenging because we don't often get home until 6pm at the earliest due to the kids' activities. He is pretty much asleep within minutes after being put to bed and then sleeps through the night until about 6/6:30, sometimes 7 everyday.

He has already figured out that the camera is always out in our family and has learned like the rest of them that you better smile for mom and dad.

We love our little Cody man and all of the things he has brought to our family.  He has definitely made things interesting at times, but what child hasn't? We look forward to what the next month will bring us!