31 for 21 Days 28-31: "You Were Born"

For the past 5 years since Colin was born, we have spent every October blogging about Down Syndrome Awareness.  Although a lot of the people that read the blog have children of their own with Down Syndrome (and it's sort of like preaching to the choir), I have still found it be enjoyable and important because you never know who might stumble upon the blog one day....a new parent, an educator, or someone that finds it by accident.  You never know what anyone may be going through on any given day and what they might need to get from seeing something on the blog. 

 

This year I sort of faltered a bit on the actual challenge (blogging every day for 31 days) and there's a million and one reasons I can list for that.  Chris and I decided a long time ago that it did not matter that Colin came sporting an extra chromosome because we believed in our hearts that he was just a little boy, like any other.  We knew that we were going to raise him just like we would (and do for) any other child.  That means that on some days, we have to work extra hard so that Colin can learn the same things that come pretty naturally for others.  Some days Down Syndrome isn't there; some days we are just a family of five.  However, there are times when the struggle is real because we haven't quite figured out how to get through a challenge we are facing.  We believe that one day, Colin will live and work in a world alongside his peers and be the special person we know that he is.  To do that, we believe that he should be learning right alongside those same peers. 

 

Colin is a special, loving, smart, funny, happy, caring, charismatic, fun-loving, active, theatrical, unique, and stubborn little boy with Down Syndrome.  We want people to know that Colin is perfect the way he is and we wouldn't ask to change a thing about him. Do we wish that things were easier for him? Of course we do, but we believe that with the right support and guidance, he CAN and WILL do anything he sets his mind to. 
 

31 for 21 Day 27: Loving on Cody

 

 

 

 

31 for 21 Day 26: Fun Day with Friends!

"One of the most beautiful qualities of true friendship is to understand and to be understood." -Lucius Annaeus Seneca



We had a lot of fun today (as always) with our good friends, the Gallaghers.  I love that both the kids and the adults have a true, everlasting friendship with this family! 



31 for 21 Day 25: Smiley

Lately, Cody has been giving us a lot of smiles when we talk to him.  He will watch you very intently for a few minutes and then break out into a big smile.  He's also been cooing as though it's in response to what you are saying to him.  Now that he is staying awake for slightly longer periods of time, it's been fun interacting with him this way.  The only thing that is difficult with him is that for most of his awake time, he needs to be moving to be completely happy. Chris and I will surely have strong shin and calf muscles from the amount of time we sit and use our feet to bounce the bouncy seat!  

 

 

31 for 21 Day 24: More Practice

Every day after Colin has had some time to rest and decompress after school, I have been working on different things with him.  Although there is no true homework aside from learning sight words, I have been working on similar things to what Colin is working on in school.  One day after this past week, we were working on fine motor skills in combination with some content (number identification and counting).  While he still has a long ways to go in terms of his fine motor control and strength, he has come a long way since the end of the school year last year.  I've noticed that because he has better control, his patience for different tasks has greatly improved and I have also found that because his strength is improving, he is more interested in tasks like handwriting practice and coloring because it is easier than it was before.  

 

I got these number tiles/puzzles over the summer and the first few times that I tried working with Colin on it he was getting incredibly frustrated because he was having trouble manipulating the pieces exactly into their spot in the tile.  A lot of the pieces were small and had to be exactly placed in order for him to be able to do it.  I could not get him to work for too long on it because he was getting so frustrated and then crying because he was really struggling.  This past week I took them back out and he was incredibly patient and was able to work through all of the tiles up through number 10 because it was so much easier for him.  In addition, he worked much more quickly than he did the last time. 

 

As you can tell in the video, he is more patient to figure out the direction the little truck needs to be in before placing it in the puzzle and will work through until he gets the piece in the tile.

 



 

A suggestion that both of our OTs have made (both private and at school) when it comes to handwriting practice is to tape the paper to the wall so that Colin is working against gravity and therefore helping to build strength when writing.  He worked through quite a few worksheets this way until he tired out when we practiced the other day.  

 

I often change up the location with him to keep him interested so after he started tiring out with the wall, we moved into his room onto his bed where he did quite a few more. 

I'm always changing up my approach and the activity that we do to keep him interested, especially after a long day of school.  It's challenging at times because by the time he gets off the bus and relaxes, we often have to pick up Kailey from school and then throw in there dinner, baths, and bed not to mention, caring for a newborn.  I also think that while it's important for Colin to have extra practice, I also don't want to burn him out either. 

31 for 21 Day 23: Special Olympics National Games



 

This past June, we had the unique opportunity of being involved in the Special Olympics National Games which was held here in NJ.  It was such an awesome experience and there were so many different things we were able to do that week (and prior) including the opening ceremonies, Colin's Young Athlete Program, and then finally the closing ceremonies.  There were so many aspects that were inspiring and we also met some pretty incredible people as well.

 





 

Just prior to the beginning of the National Games, we were invited along with a few other Young Athletes to the Toys R Us (sponsors of the Young Athlete Festival for the National Games) in Times Square to help cheer on the runners of the Law Enforcement Torch Run.  This group of special runners were taking the torch on its journey to the opening ceremonies where it would be used to light the cauldron.  We had the opportunity to meet some pretty great people who loved what they were doing for the Special Olympics.

 

Another exciting moment from the day was when we were interviewed by Fox 5 news regarding our involvement in the Special Olympics and what it has meant to us since Colin first started.

The next event was the opening ceremonies held at the Prudential Center in Newark.  To say that night was inspiring was an understatement as we watched the parade of athletes representing their states, performances, speeches, and a show like none other when the cauldron was lit.  Colin really enjoyed himself that night and still talks about the "Special Olympics show".  The best part was, we got to watch the show with other athletes and SONJ staff members. 



 

 

Throughout the week at the SONJ complex, Toys R Us had sponsored a Young Athlete Festival complete with various tents and sports activities for the athletes to participate in.  Each day of the festival, there was also a 25 meter race for the athletes to participate in. 



 

During that week, we also had the opportunity to meet members of the International Special Olympic Committee while on their visit to the games.  We spent time with Tim Shriver and Bart Connor, along with other members during the visit.  It was such a great experience!

 

Finally, the week ended with the closing ceremonies where Colin and some other Young Athletes literally closed out the ceremonies as the "future of Special Olympics".  The theme for the night was "play unified, live unified" and was another great experience.