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!