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 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