31 for 21 Day 10: Gross Motor Activities

Even though Colin's gross motor skills were at one time slow to develop, it is by the far the area of development that Colin enjoys the most and has really caught up with time.  He is really motivated by physical activity and specifically enjoys playing a variety of sport activities.  During some activities, Colin's interest level far exceeds other ones and he can play for longer periods of times during these games.  However, there are times where Colin will be really excited to start but then quickly loses interest or wants to sit down because of some other factors.  

 

 

One of these factors affecting Colin is that he has difficulties regulating his body temperature during more extreme temperatures.  This was actually something that kept him in the hospital for extra time because he was not able to keep a steady body temperature when he was first born.  We find this to be especially challenging in the summer because he does not handle the heat as well.  He will be interested in starting an activity, but because of the sun and the temperatures on the beach some days, it is very short lived because he starts to overheat really easily.  You can tell this with him because his face gets pretty red but he very rarely sweats.  Although he loves the water, he then cools off too quickly and is often shivering shortly after getting in, even on the hottest days.

 

Colin really loves running, especially when participating in races, but a factor that has resurfaced again is that Colin has anemia.  Colin's hemoglobin count (carries iron in your blood) is very low as well as his iron stores are really low.  Iron is really important because the oxygen is carried this way throughout your body.  Two things that we have noticed with Colin is that he gets dark circles under his eyes when he is anemic and he fatigues much more easily than is normal for him.  He often doesn't last as long during physical activity because he tires out and if this is combined with higher temperatures, he definitely loses stamina very quickly.  We are working on finding answers to this problem through some tests we have had done recently (celiac test was negative and his thyroid levels were normal).  One of these tests is a stool study to see if he is losing blood through his intestines (his reflux may play a role with this).  We are just waiting for the results on that one and to see if we need to have a scope done to look more closely.  

 

 

 

A few years ago we had tried Colin out in the town soccer league which was great, but his interest level for sustained periods of time was very low.  He enjoyed aspects of it but didn't necessarily enjoy having to do specific tasks during the first half hour that was more like a clinic.  This year, we enrolled Colin in the developmental soccer through the Special Olympics of NJ because of the timing with the town soccer.  Unfortunately, we have now lost 2 weeks due to rain but it has been going pretty well.  Colin needs more frequent breaks and often won't participate unless one of us are out there with him.  I think part of this has to do with the fact there is a lot going on at the same time.  

 

He also enjoys WATCHING sports just as much as he enjoys playing.  I think a lot of this can be attributed to the fact that for much of Colin's life, both Chris and I worked in Athletics so he spent a lot of time at sporting events.  Even though my career has changed, Chris works at the local university so we are at his sporting events all of the time. 

 

 

Earlier this summer, Colin had the opportunity to participate in a golf clinic and he really enjoyed it.  We are actually interested in getting him more involved in this in the future.  There may be some opportunities through the Special Olympics next fall so it will be fun to get him involved. 

 

Colin has taken a BIG interest in baseball this summer.  At first, he was hitting the ball off of the tee independently but then my Dad and Chris started pitching to him.  It took some time before he worked out the coordination of all of it but once he did, he's been doing GREAT.  I can't seem to get the good moments on camera, but here's a snippet of him hitting the ball.  We've been losing a lot of balls over the fence lately!

 



 

 

 

Colin is pretty fearless and is willing to try most physical activities.  He loves climbing on structures at the playground and his strength and speed are really getting better very quickly.  It's been a lot of fun to watch!

 

31 for 21 Day 6: Behavior as Communication

On Friday we had a 30 day review meeting at Colin's school to discuss his progress that consisted of a lot of the staff that is working with him.  We also have been in regular communication with his teacher regarding his progress in school.  We are finding that there is a list of challenges that they are working through with him, with the most challenging being his behavior. 

 

In trying to problem solve some of these behaviors, I have been spending a lot of time researching behavior in inclusive classrooms and have come across some helpful information.  I recently came across a great website called Inspire Inclusion by Dr. Julie Causton who has some great information as well as webinars that have been helpful.  Through her site, I signed up for newsletters geared towards teachers and parents which have led me to other resources as well.  One of these newsletters led me to Brooks Publishing Company where I found another webinar called "Supporting Behavior in the Inclusive Class".   The main idea of the webinar was that behavior is communication and it really gets you to look at what may be causing these behaviors.  However, more importantly, it identifies strategies that can be used to try and prevent these behaviors from occurring. 

 

 

A handful of the behaviors that have been a challenge with Colin at school are related to his still progressing social skills.  This is an area of development that does not come easy for him and is something that we spend a lot of time working on.  Because Colin's speech and language is not as developed as his typical peers, he is not able to express wants and needs easily and sometimes appropriately.  For example, it has been reported a few times that Colin has pushed other students on the playground.  We have also been told that he enjoys chasing and being chased on the playground.  We have seen him socially try to initiate play with others by using his hands instead of his words so it is quite possible that Colin is trying to engage with his peers because he wants to play with them by pushing them.  Colin's attempts to initiate play with Kailey have significantly improved but he is also comfortable with her.  With time, and as he improves upon these skills, we hope to see it translate into the school setting. 

 

Colin also displays certain behaviors when it comes to doing more challenging work.  We know that since behavior is a means of communication, he is expressing himself by acting out in certain ways.  If the behaviors worsen, then he is escalating those behaviors to convey what he is thinking or feeling.  In order to find strategies to work on improving these behaviors, we have to get to the root of what is causing them and it also takes some creativity to work through them.  The behaviors are reported to us through a checklist based on the goals written in his IEP.  However, I started thinking that maybe Colin could have a role in reporting his behaviors to us himself.  I created this behavior chart today with the hopes his teachers at school can use it by putting a smiley face to represent how well that period went and then review it with him at the end of the day.  Just like we address whether or not he is the same clothes for potty training when he gets off the bus, we can take the sheet out and have him show us how many smiley faces he has.  He can be rewarded for his progress and we can reinforce the negatives. 

 

We are hoping that we can all work together to figure out what the cause of some of these behaviors are by collecting real data on when, how and with who they occur so that we can find strategies to both prevent them from occurring and to use to correct when they are occurring.  I am grateful for the immense I have gotten from some friends who are more experienced in this than I am...and hoping that we can help Colin to make progress so that he can be successful.

31 for 21 Day 5: Respect





Starting on Monday, Colin's school is going to be celebrating a "week of respect" and in honor of that, families were given a peace sign that they needed to decorate.  The goal of the project was to demonstrate what respect means to your family.  We talked about it with the kids and spent some time discussing about what it means to be a friend, to be kind to others, and to help out whenever they could. 

 

Today, Chris and the kids participated in races in support of the Paul Jackson Fund, which was created in honor of a family member of Aunt Maureen's.  The kids were really excited to cheer for Chris, Uncle Brian and Aunt Maureen and we made sure we were in a few spots in order to do so.  I would tell the kids when I saw them coming but they otherwise cheered and clapped all on their own.  



 

  
The thing was, I found the kids not just cheering for the people that they knew.  As many of the runners ran by, they clapped and cheered and said good job over and over again.  They didn't know who they were cheering for but were showing their support for everyone that was running.  They are 3 and 5 years old, but they have learned how to support others. 

 

The purpose for so many of us to raise awareness during the month of October is so that people see that Colin is just a person like the rest of us.  He has emotions and feelings, likes and dislikes, and he has lots of people who love him.  We raise awareness because we want people to see that there is nothing scary about Down Syndrome.  Teachers spend time talking about respect at school, even at such young ages because they are the ones that get it.  They often don't see the differences that adults do and they know what it's like to be a friend regardless.

 

Raising awareness and respect should also start at home.  Our kids should see it in the way we treat our spouses, the way we support our friends and family, the way we help others, how we speak to those around us, using words like "please" and "thank you", smiling at strangers, holding the door open for others, and how we are otherwise good people. 



 

The Special Olympics has started a movement for athletes to "play unified".  They are igniting a change to take place by saying that if we play unified, then we will begin to live unified.    When we live unified, we are supporting others and seeing past the differences. 

 

 

We just want you to see THIS little boy for who he really is.  He isn't defined by his disability or differences.  Respect.

31 for 21 Day 4: Developmental Soccer

 

As we got closer to the end of the summer this year, Chris and I started discussing what we were going to do with Colin in the fall.  We knew that we wanted him to participate in soccer and were actually hoping that both Colin and Kailey could participate on the same team together on the town soccer league.  Unfortunately, when we started looking into that further, we realized that because of their age difference, they would be playing on separate teams at separate times.  Colin's time wasn't until 1:30 pm and for him, that is a really tough time of the day.  It does not matter what we are doing on any given day but that 1pm hour range typically finds Colin looking tired.  We also just found out this week that Colin is severely anemic (more on that in another post) which contributes to him fatiguing more easily.  

 

We discovered that Special Olympics NJ had a developmental soccer program designed for kids with and without disabilities that was set up clinic style to teach soccer fundamentals.  It was scheduled for 9am which was perfect for Colin so we signed him up. 

Colin has now participated for 3 weeks and seems to be enjoying it.  However, despite the fact that he loves physical activity, particularly anything sport related, he still fatigues easily and needs to take frequent breaks.  Last week was on the warmer side and since he does have a little bit of trouble regulating heat, he seemed to struggle a little bit more.  However, once he gets into a specific activity that he likes, he can last for longer periods of time. 

The program is a great way for Colin to work on his skills and learn how to follow directions from his coaches.  We are looking forward to seeing how Colin progresses through the season. 

 

If you are a NJ resident and are interested in finding out what Special Olympics has to offer, check out their website by clicking here. 

31 for 21 Day 3: Support



While I was trying to find inspiration for a post today, I was sitting at my desk staring at a blank screen when I looked up and saw this picture hanging on the wall. 

This picture was taken at the Special Olympics of NJ summer games when Colin was running in his future stars race.  When Chris and I saw it for the first time (Thanks Cathy!), we couldn't believe how one picture could have summarized Colin and Kailey's relationship so well. 

When Kailey was born, Colin was just one month shy of turning 2.  When we brought her home, I was expecting to see this instant bond between the two of them form when in actuality, it was the complete opposite.  It took a long time for Colin to start to really acknowledge her existence but once he did, we watched the evolution of what is turning out to be a true friendship form.  It is no secret that in many ways, Kailey has caught up to Colin developmentally and surpassed him in areas like communication.  However, because of their friendship, his social skills in turn taking, communicating, initiating play, expressing feelings, etc. have significantly improved.  What is even better, the support they have for each other is one that could really be used as a model for a lot of adults.  Families are the first people to look past the differences and see us for who we really are. 

...families accept us despite the things that make us so unique from one another.  I hope Colin and Kailey's friendship and unconditional love for each other can serve as a model for others that we should all look past the things that make us so different.  Those things do not define us, but rather, make us into the people that we are. 

31 for 21 Day 2: Inclusion and Acceptance

Before Down Syndrome Awareness month started this year, I took some time to scroll back through some of my earliest posts.  What always hits me is the very first post I ever wrote:

 

"My goal in creating this blog is to write about my thoughts and feelings as my husband and I begin our journey with our new son Colin and his diagnosis of Down Syndrome.  To say that the news was not a shock would be a lie but as time has gone by, we have slowly begun to realize that this is our special mission in life.  Colin has already begun teaching us and so many people around us what a strong and determined little boy he is...and I couldn't be more proud." 

 



 

The post was written just one month after Colin was born and I can vividly remember sitting down at my computer, searching for an outlet to purge all of the things that I was feeling.  I went on in the next post to talk about our "story" and how the diagnosis was one we were not expecting.  We were extremely lucky because even though we felt incredibly emotional and devastated when the diagnosis was confirmed, we had family and friends who rallied behind us and supported us.  We were even luckier because we had this little boy who we loved so much.  We had had the opportunity to hold him in our arms and meet our baby first, before all of the information started to be given to us.  Despite whatever fears and anxieties we had, it was easy to love Colin and just be a family and that's what we started to share with everyone through the blog. As Colin was checking in with new doctors and therapists, we also started to share that as well and pretty soon, the blog just took off. 

 

 

When people are facing the beginning of their journey the way Chris and I once were, I hope that if they stumble upon our blog the first thing that they see is a little boy with the biggest smile in a family that loves him immensely.  If they keep reading and take the time to look around, I hope they see that we are actually a pretty normal family who does fun things but also has challenging days (especially now that we have grown to be a family of 5!) like a lot of families do.  If they start following our blog they will see that we do have days where Down Syndrome is a topic that is discussed and it might highlight some medical issues, behavior issues, or more recently, challenges in school.  

 

A few weeks ago, Colin got on the bus on his first day of Kindergarten all by himself after we had decided to place him in a typical Kindergarten setting.  There was much opposition by our school district to place him there because where we are, students with disabilities are commonly placed in special education classes.  Chris and I wholeheartedly chose this placement because over the past 5 years that we have spent raising Colin, we have treated him as we would any other child. 

After spending many months doing a lot of research on inclusion, Chris and I made an informed decision to put Colin in the classroom we thought he would thrive the most.  We knew when we made this decision that there would certainly be challenges to this, but we were willing to do what it took to make it work.  We made the decision that we did because the benefits to being among his typical peers in a typical setting far outweigh any of the cons. 

Chris and I believe that Colin should be a valued and contributing member of society and to do that, he must be one now.  We believe in Colin's place in this world, in his community, in his Kindergarten class, and most especially, in our family.  We will continue to fight for what we feel Colin deserves. He is after all, just a little boy who happens to have Down Syndrome.   

I will admit that while we are 100% confident in our decision for where we believe Colin belongs, it does not mean that we don't spend time worrying about the mounting challenges.  The anxieties that I feel today, and every day, often feel very heavy because there are lots of things to sort out.  Every night that I lay my little boy down I say a prayer that we will figure out this unchartered road so that he can be as successful as he is capable of being.  I worry that even though we see his potential, others will not see it and I worry about him being accepted for who he is.  Tomorrow we have a meeting to discuss his progress so far and to hopefully brainstorm as a team strategies that will allow him to do just that. 

"The woods would be very silent if no birds sang except those that sang best." 

- Henry Van Dyke 

31 for 21 Day 1: Hi, I'm Colin!



Years ago when I started blogging, there was a challenge among bloggers called "31 for 21" which represented posting every day for 31 days in honor of the fact that those with Down Syndrome have an extra 21st chromosome.  With October being National Down Syndrome Awareness Month, it was a great way to spread awareness and dispel myths about those living with Down Syndrome.  Although I didn't quite make it through the entire month that first year, I have followed through each year and it is something I really enjoy doing.  Every year, I have tried to include posts that are both informative about Down Syndrome and also ones that show that Colin is more like his typical peers than not. 

 



My goal this year is to continue to do that but more importantly, to promote acceptance for the differences that exist among everyone, most especially for those with disabilities.  Yes, Colin has Down Syndrome and yes that makes him different but it does not define the person that he is.  On our end, as Colin's parents, we have pushed for him to be fully included in a typical Kindergarten setting among his typical peers because we passionately believe that Colin should be a valued member of his community.  We believe in Colin and we believe in his potential. 

Throughout the month of October, we are looking forward to reintroducing you to Colin and to showing all of the ways he's just like any other 5 year old little boy. 

 

"Hi!, I'm Colin!"

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