Friday, October 18, 2019

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! 

Thursday, October 17, 2019

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! 


Wednesday, October 16, 2019

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! 



Friday, October 11, 2019

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.

Thursday, October 10, 2019

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! 


Wednesday, October 9, 2019

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


Tuesday, October 8, 2019

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!