Down Syndrome Awareness Month - Muscles (Day 18)

Updating the blog tonight was on my mind because I was trying to think about what I was going to talk about. But then, Colin was getting ready to take a shower and I couldn't help but think about my chubby little boy (a picutre that I can't find, but was similar to this popped into my head) and I was once again surprised at how much his body is changing lately. This was 4....

...and this is 10. (just don't pay attention to his facial expressions)

What amazes me is how muscular his body is becoming. I think this is a product of all of the physical activities he is doing lately but also, how determined he is to do different things. I really think he is motivated by things he sees on TV (American Ninja Warrior) and by doing things he really WANTS to do.

One of the things that is most ironic to me is the fact that when the first photo was taken, Colin was at a point in time that he was on his most restrictive diet. He was not that interested in trying other foods and he was mostly eating cottage cheese and strawberries for the majority of his meals. These days, he primarily eats cottage cheese and strawberries for breakfast and maybe lunch but he loves eating all different things for dinner. We actually don't need to worry too much about making something different for him because he will eat any meat (it's the sides that are the issue) and any pasta dish. His favorite meal now is a taco dish I make that he calls "taco shells"; taco meat, shell noodles, and cheese. He will take a lot of leftovers in for lunch the next day so his lunch is pretty hearty as well. What's the most exciting is the fact that he WANTS to try different things. 

I am thankful for how much Colin continues to grow and change but also, I feel a little sad missing that little boy! 

Down Syndrome Awareness Month - Colin's Eyes (Day 17)

A common characteristic among children with Down Sydrome is Brushfield spots. If you look closely at Colin's eyes in this picture, they are the white speckled spots that surround the iris of his eye. When you look up the definition, it basically says that it is an aggregation of connective tissue which is commonly found in the iris. Basically, it means nothing other than adding a pretty speckling to his beautiful blues! 

Down Syndrome Awareness Month - Activities (Days 12-16)

I REALLY thought I could do it and keep up my posting every night but life happened and here I am getting caught up on 5 days of blogging for DS awareness. One of the reasons is because the kids are each doing their thing this season and keeping busy with their activities. Fortunately scheduling has generally been working and we enjoy watching them in participate in things they love to do. It has always been important for us to find things for the kids to do that would keep them active but what they would also enjoy doing. 

Colin has been participating in Karate since around this time 5 years ago. It has been activity that has really good for him in so many ways including building his self confidence, making him stronger, improving his focus and attention and being able to defend himself. He is currently a purple belt and while things are getting more technical as time goes by, he is still working hard and making progress in the right direction. 

This season he started a new activity which is participating in a Challenger flag football league. This league brings students with disabilities and high school football students together on the football field each week. Colin is really enjoying himself while learning a new sport and there are lots of great moments of kids playing together and having fun! 

Kailey also continues to participate in Karate and has been doing so for the past 3 years. She is currently a half blue belt and we love watching her transform into a strong and confident little girl in all areas of her life. There are so many benefits to her participation and we have seen so many positive changes over the past 3 years. 

Kailey is also a member of a travel soccer team and they have been playing together since last season. There was a big learning curve for all involved, but this season has been really fun to watch as their improvements are happening right in front of us. In the beginning, Kailey seemed very hesitant and afraid and now she is tough and aggressive and we love watching her play! 

Cody is participating in an activity he chose which is fall baseball. He absolutely loves playing and is so excited for each game each week. We have noticed some changes in him also because he has gone from being very silly in all of the down time, to taking things much more seriously. He always has a huge smile on his face while he is playing! 

Down Syndrome Awareness Month - Siblings (Day 11)

Just like any other set of siblings, our kids have the best of days together as well as the worst of days when they just can't get along. In the grand scheme of life, they truly are friends and I have enjoyed watching their relationships grow and change throughout the years. I think most new parents of a child with a disability worry and stress over what life will be like for the siblings (and we were no different) but I truly believe that Colin having Down Syndrome is making my children better people for this world. Because of Colin they are learning to communicate in different ways with others, have empathy, be patient and understanding, more inclusive of all people, more helpful, and so many other things. Most especially, they are learning how to support Colin (and each other) in ways that they each need love and support. They say and do things daily that surprise me like these few examples. 

- Over the summer at the Special Olympics Summer Games, Cody enjoyed hanging out with one of Colin's teammates who cannot communicate with words, but rather, inflection of sounds and hand gestures. He's an older athlete and he's always making sure everyone is where they should be/when. He was trying to say something to me this summer and I wasn't really sure what that was and Cody turned to me and said "Duh Mom, he said...." and then explained to me what it was he was saying. 

- On the first day of football practice this season, Colin said hi to a teammate but she didn't respond. Her dad explained that she is deaf and showed Colin how to say hi to her (bend down to her eye level and wave so that she can see him) which he then did. He continued to do this every time he would see her. One day, Chris was at a practice or game and said hi to her (without waving). Colin immediately spoke up to him and said "Daadd! She's deaf! You need to do this (and bent down to her level and waved - she waved back) so that she knows you are talking to her!"

- Kailey says things almost daily because she is probably the MOST aware. Colin's teacher told us that she noticed Colin crying on the playground the other day (this is a whole separate post in itself) and she went up to the teacher to ask/let them know. She was worried and wanted to make sure they knew. She is also incredibly helpful to Colin and will often step in to help him with things before Chris and I are even able. 

I don't think that I could have predicted at the time of Colin's birth, when I unnecessarily worried about how my other kids would be affected, what the outcome would be on our children. The outcome is better siblings, better children, better friends and one day, better people. I am so thankful for that.

Down Syndrome Awareness Month - Writing (Day 10)

Colin has been working really hard on his handwriting for a long time. For the most part, his handwriting has been pretty intelligible and only starts to slacken some when he's tired. He's always been pretty interested in writing but it seems like he's had a big surge lately of really wanting to practice writing. This has actually been serving two purposes; he's practicing writing, but also practicing copying sentences which is a skill he is also working really hard on (forming his own sentences). The way he does this is by copying his Dog Man books onto random pieces of paper or into composition notebooks that he has. Most often, he can be found either reading or copying! He can not be interrupted either! 

Down Syndrome Awareness Month - Love (Day 9)

I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. - Psalm 139:14

Down Syndrome Awareness Month - Braces (Day 8)

Last spring after a routine cleaning, the dentist recommended we take Colin to an orthodontist out of concern for a terrible underbite he had. Colin's teeth started falling out late and are VERY late to grow in the adult teeth so we were aware that this was probably going to be an issue. He recommended a specific orthodontist that he thought would be a great fit for Colin and so off we went. 

At the initial visit, Colin handled all of the imaging and evaluations like a pro, but there was very little that actually went into his mouth at that time. He recommended that Colin get braces on the top row of teeth as soon as possible because the underbite was damaging to the adult top tooth that had already grown in (the bottom teeth were biting into the top adult tooth every time he chewed). We decided on a date over spring break and showed up for the appointment to get his braces on. Colin started off really well but in order to get the braces on, he needed some gauze in his mouth, the usage of equipment, etc. and I think he started to get really overwhelmed at all that was happening at the same time. 

He started to have a little bit of a meltdown. We were all worried and after some thought, the doctor and his wife asked if we would be ok to come back at the end of the day when the office was closing; there would be only staff left and they would give Colin the time that he needed to process everything. We left and started talking about it as much as we could and practicing with whatever we could find that resembled tools like the doctor's tools. We were even practicing at the beach! 

We showed back up to the appointment at the end of the day armed with a movie on my phone and what we hoped would be sufficient practice for the actual appointment. I think there were many factors that contributed to the success of that visit; a quiet office, a VERY patient doctor and assistant, Mama Mia streaming on my phone, supportive siblings, and a doctor that modified when possible and worked as fast as humanly possible. 

The braces were put on successfully and Colin was proud of himself. However, the days that followed were really tough as he got a HUUUUGGE blister on the inside of one of his cheeks (and would NOT put any wax or medication in his mouth) and he swelled up. 

He was miserable and acted similar to being sick. We felt TERRIBLE and it was made worse because there was nothing we could do to make him feel better. We FINALLY got him to do some basic salt water rinses and the things started to turn around. Once we got past the initial swelling, things started to improve and then it was almost like he didn't have them at all. He's been really great about brushing and doing rinses (he does one specifically for braces at night and then just Listerine in the morning) and after many follow up visits, his tooth is where it needs to be. What we are working on now is making space for other adult teeth to come down (which are taking a REALLY long time to do so). We know that this is a "temporary" set to fix some issues and then a full set will come later once all of the teeth are in. We are SO incredibly lucky to have found such a patient, accommodating, and awesome doctor! 

Down Syndrome Awareness Month - Noncompliance (Day 7)

I think that one of the most frustrating challenges we face with Colin is noncompliance. It is certainly not like what it used to be because at this age, Colin understands exactly what he is doing in response to an undesired task or just decides that he doesn't want to follow a direction. At any given time, he will intentionally take his time when he knows you are rushing him, will ignore you or pretend like he doesn't hear you or is just plain stubborn. We have some strategies that we use in any given situation and most of the time I can rationalize why he might be doing what he's doing, but it doesn't make it any easier when it's just frustrating. I think what makes it most frustrating is that these behaviors are not consistent and they often crop up after a period of things going pretty well (like today). I snapped a few pictures today as examples. First, we were rushing to squeeze in an errand before Cody's baseball game and I had calmly asked Colin several times to get in the car. He was not ready, so he continued to swing in the tree. 

Then, when we were in Target, he kept stopping at random displays and although I would ask him to move it along he would look right at me and continue looking at what he wanted to at his own pace. Sometimes simple strategies like placing my hand on his shoulder, trying to take his hand, or directing his attention works, but not always.

One of the ways I show Colin that I am not happy with his not listening is by giving him this "look". Every time I do it, he asks me to stop because he "doesn't like it". He asks me to "make the lines on my head go away". I happened to catch part of my conversation with him about it. In the second video he was being a little bit more silly.

Even at some of the most frustrating moments, he still finds a way to make me laugh! 

Down Syndrome Awareness Month - Ears (Day 6)

When we were at the Ear Nose and Throat doctor's office in late summer for a follow up visit, we were all amazed at the fact that Colin has been going there for 10 years. For the most part, we've been really lucky but this is probably the one area that he's needed the most attention medically. As a baby and toddler, Colin never had ear infections but by the time he was 6, he needed to have his tonsils and adenoids out because his sleep was terrible and it was determined that was a result of his tonsils being too big for his airway. When he would lay flat, his tonsils would cover most of his airway and then it was difficult for his body to get the oxygen he needed when sleeping. After awhile later around 7, one of his ears was not testing well and it was determined that he had fluid that was starting to solidify and so that was cleared out and a tube was put in just in his left ear. The tube lasted for just over it's liftetime (3.5 years) and came out at the start of this summer. He made it through the whole rest of the summer without any issues so the doctor feels that as he's aged and his body is physically maturing, that he should be good without having a tube any longer. Let's hope for continued success! 

Down Syndrome Awareness Month - Attitude (Day 5)

There are so many different things I want to talk about this month but I couldn't decide on what order I wanted to tackle them. My organized brain thought there should be some kind of theme but then my exhausted self said to just do the first thing that came to mind. There are so many awesome things that Colin is doing right now that I can't wait to talk about this month, but unfortunately, the first thing that comes to mind is the most developmentally appropriate issue we are dealing with right now...Colin's attitude. 

Throughout most of last school year, Colin was probably our "easiest" child (relatively speaking) because he was always the most compliant. He was given directions and he followed through. School was going great, socially he was doing great, etc. When summer came along, the feeling that came over me was "whoa, when did we get to the tween phase?". One of my friends makes me laugh all of the time because when I'm venting over certain things she always says to me "didn't you raise him to be like this? Didn't you raise him to be as much like his peers as he can be?". Soooo, here we are, in the tween phase. What defines this phase do you ask? Well, it's the attitude, the disgust for certain things Mom and Dad ask of him, the talking back, frustration when things don't go his way, wanting things when he wants them, rolling his eyes, etc. Chris and I often have a really hard time containing our giggles/laughter when some of these things happen because they ARE so typical but also, sometimes it's a little harder to go through typical phases with Colin because of how we have to approach our response to them. Homework has always been a relatively smooth time period of our day, but lately, Colin gets so frustrated if it's not exactly how he wants it to be. I happened to snap some quick videos of Colin during homework the other day. Please note, eye rolling and responses to things I'm saying. But also, how can you not laugh? 

Down Syndrome Awareness Month - Cody (Day 4)

The last of this part of the series is Cody! He is our youngest, and also deemed our "wild child". Chris and I laugh to ourselves all of the time when we look at our kids and the progression of how things changed for us from oldest to youngest. We truly thought that Colin was going to be our hardest child out of any of the kids we had, of COURSE, because he had Down Syndrome. There certainly have been challenges along the way because of that but we will tell you to this day that without a doubt, Cody has been our most difficult child to parent. 

Cody is filled with so much energy and he is our most adventurous child. He is willing to try so many different things and isn't scared to do so. When you look at his body, he is covered in so many different cuts, scrapes and bruises because he is just so active and always so willing to do things as fast or as hard as he can. He has always tried so hard to keep up with Kailey and Colin that I think it is where so many of the challenges we faced stems from. I can remember him sitting in a high chair at such a young age (6 - 9 month range)  and just reaching across and grabbing food off the closest plate. He has always wanted to do what everyone else is doing and tries very hard to do so. He loves to learn and share what he is learning with all of us. He is kind and loving and fiercely determined. We love watching how much he has been growing and changing lately, especially since starting Kindergarten. He has learned so much from being Colin's brother and we get so excited to see how he uses that in so many different ways. He is one special little boy! 

Down Syndrome Awareness Month - Kailey (Day 3)

I know that this month is called Down Syndrome Awareness month, but Down Syndrome is really just one small piece to our family's puzzle. Each of our three children bring their own specialness to this world and so talking about Kailey and Cody this month is just as important. In fact, while they are not the children WITH Down Syndrome, in some ways, it does play a role in who they are becoming as well. 

Kailey is our "oldest" middle child and I say that because she has many personality traits similar to that of an oldest child in birth order. She is incredibly helpful, she likes to take the lead/take charge (which at times can also be deemed "bossy"), and she watches out for others, especially Colin and Cody. At 8.5 years old, she is very "aware" of things that happen around her. She is very sensitive and at times, emotional, but she does a good job at pulling herself together. She likes to please adults whether that is Chris and I, her teachers, coaches, etc. and she cares very much what they think. She works hard to make sure she is doing things the right way. She has become very athletic and currently takes Karate classes two times a week (she is a half blue belt), plays on a travel soccer team, and also plays basketball and softball. She enjoys reading and is very artistic (which definitely doesn't come from Chris or me!). We love what Kailey being the only daughter adds to our family! 

Down Syndrome Awareness Month - Colin (Day 2)

Over the past 10 years of blogging, I have spent a LOT of time sharing so much related to Colin's development, hitting milestones, successes, challenges, etc. The very first time I hit "publish" on a blog post, my thought process was that it was going to be a place I needed to vent, but I very quickly realized that Colin was a very determined little boy and there was so many reasons for celebration. The blog turned into just that; a place to celebrate and at times, a space that allowed me to work through some of the emotions that Chris and I were working through. His diagnosis of Down Syndrome at birth came as a complete shock to both of us and I know the feelings that we felt that day, and for weeks following, were feelings of grief that we will never forget. What we thought would be the hardest thing we'd ever go through turned into the greatest blessing we never realized we were missing. 

Colin is just about 10.5 years old and he has such an incredible personality. He's really funny and witty and loves to make others laugh. He has ONE joke he loves to tell over and over right now that's a knock knock joke asking why the chicken likes to cross the road. The punch line is so old right now (to get to Chick-Fil-A of course!) we have a hard time laughing, but he still cracks himself up every time. He has always been and continues to be so observant and arguably, a significant skill of his that allows him to learn so much. Along with that comes determination to accomplish anything he decides he wants to accomplish. With patience and time, he continuously observes whatever it is (watching others, carefully practicing, etc.) until he feels comfortable enough to try it/practice it on his own. He's strong and lean and we've been amazed lately at how his body is shaping and becoming quite muscular! A lot of this is because he loves to participate in sports and play, he keeps practicing/trying different exercises (more on that in another post) and is very active. He still loves music, acting, being the center of attention to "perform" and is determined to have a job at Sesame Place one day in the parade. He's sensitive to others' emotions (particularly our family) and wants to comfort us if he's aware that we're not feeling the best. He's often seen putting his arm around others, sneaking kisses to the cheek, giving hugs, etc (mostly family again). He loves his school community; his teachers and his friends that he's made. 

Down Syndrome Awareness Month - Day 1

Today, October 1st, marks the beginning of Down Syndrome Awareness Month and it is a time dedicated to education and awareness about all things related to Trisomy 21 (Down Syndrome). For many years, I would participate in a challenge sponsored by another blogger to blog for all 31 days of October but as time has gone by, it has gotten more difficult for me. I am hanging on to this blog for many personal/emotional reasons but finding the time to sit down and share the way I used to has become increasingly more challenging. Each year of the past 10 of raising Colin have all brought different challenges and achievement of milestones and this year is no different. My goal is to spend this month highlighting some of those, but also, ones related to raising three very different and unique children. 

Join me as I re-acquaint you to Colin, our 10 year old son with Down Syndrome and his 8 year old sister Kailey and 5 year old brother Cody!