Sunday, April 28, 2019

Spring Break 2019

This year with spring break being so much later, it was MUCH needed for all of us. The week leading up to break, our kids were having a harder time waking up each morning and were exhibiting some behaviors that were not as typical for such a prolonged period of time. On Friday morning, they were so happy to be able to stay in their pajamas (as was I) and not have to rush anywhere. 

Our first event to start our break was an egg hung at a friend's house. The kids were so excited and had a great time with their friends. 

On Saturday, we celebrated Colin's 10th birthday with dinner out at one of our favorite restaurants and cake back at the house before heading over to a friend's house to decorate eggs. 

On Easter morning, the Easter bunny dropped off our eggs at a different house, so we went to find them there before hosting family back at our house for Easter dinner. 

It was a BEAUTIFUL day so we spent a lot of time outside. 

Colin had such a great day on Monday celebrating his birthday with a few friends from his class. He had a blast dancing the night away! 

I had so many adventures planned for the week in addition to a few things I wanted to accomplish, but as with any best laid plans, it doesn't always work out the way you want it to. There were parts of our week spent hanging around at home or running around doing errands...

We took a quick trip to the beach...

After Colin got his braces on, we had to play the days by ear based on how he was feeling but we still managed to visit Barnegat Lighthouse...

squeeze in some playdates...

...and finish up the week with Colin's track practice and Kailey's soccer practice and game. 

The week went fast but was filled with lots of memories. I'm sorry to see it end! 

Friday, April 26, 2019

Colin: This is 10

There was a lot on my mind leading up to and subsequently following Colin's 10th birthday. This year was extra sentimental for me but mostly because I can't help but notice how much we have all changed. In the beginning, we were focused so much on milestones and helping him achieve them in addition to the things that he wasn't quite able to do yet. In the middle, there were challenges associated with Colin being a toddler and then transitioning into elementary school where we were fighting for an inclusive education. And at the end of this decade, I can't help but notice that things are pretty much "normal" now around here. I didn't really want to link his birthday post with everything else, so this post is focusing on Colin being 10!  

As a 10 year old, Colin is pretty typical! He loves all things sports, enjoys reading, and loves singing/acting to some of his favorite tunes/musicals (he currently loves Aladdin and Mamma Mia!), and also loves video games.

He's ready to perform "One Jump Ahead" for the Talent Show! 

He's so excited to start golf lessons! 

He's participating in Special Olympics Track this season!

His balance is still a work in progress but he's always willing to try to keep up with everyone else. We recently visited the skatepark and I was so surprised to see him stick with it for as long as he did. He is always willing to try and that's one thing I love about him.

He is so polite and confident; he will walk right into a room up to friends or strangers and shake hands to say hi. He asks how they are doing and is genuinely interested in what they have to say. However, along with being a typical 10 year old comes pretty typical behaviors as well. For the past few months, Colin has been trying out some words or phrases that he has picked up on. In all honesty, to hear him say these things at times makes it difficult to stay serious and not laugh. It is a work in progress and a lot of consistency to remind him that it is not appropriate to say some of these things. Some of my favorite phrases have been...

Me giving a direction. 
"That's crap!"
Me reprimanding.
"Well, it is!"

Me giving a direction. 
"I don't like you right now!"
"Colin, that's not a very nice thing to say to me."
"Well, I said it under my breath."

Me giving a direction.
"I'm not happy with you right now and you're mean!"
Me making a comment. 
"Well, you make me very frustrated!"

A long time ago, someone said to me that kids like Colin don't always have the filter of knowing when it's appropriate to say things out loud and when to "mumble them under their breath". Although I don't always like his responses to me, I've actually started trying to teach him that if he's frustrated, he needs to say things quietly to himself so that he can't be heard. He almost always will come and apologize and tell me he loves me when he knows I am not happy with something he has said. 

In terms of his education, he is having another phenomenal year. We are so lucky that Colin has such a dedicated team that is working so hard to ensure his success. He loves school and I think that is because he is feels so happy and comfortable there; that only is possible because he is such a valued member of his community. He works really hard at school and at home and we are so proud of him! 

There are 2 health issues we are dealing with at the moment. Over the summer, we found out that Colin was iron deficient on the verge of being anemic. We had difficulty giving him the iron supplement and so he took it sporadically. However, about a month or so ago, we took him for a blood draw and found his numbers hadn't rebounded that well and so we have really been pushing it hard with him and are finding he's been significantly better with it (it is part of our nighttime "meds" routine now). The smell of it is terrible so I know it isn't easy to take! 

The other newest health issue is the fact Colin just got braces. We were referred to the orthodontist by our dentist because the adult teeth that are growing in are not growing in correctly (teeth issues are common with people with DS). After our initial eval, we realized that one of his front adult upper teeth goes behind the bottom teeth when he chews so he's actually biting into the tooth each time. We took him on Wednesday to have the braces put on for a morning appointment. He went right into the chair, had his teeth cleaned but then I think went into sensory overload when the doctor started working and started crying. We gave him some space but we couldn't "get him back" so the doctor suggested we come back later when it was quieter in the office. We spent the day practicing using special "tools" (a straw as a spit sucker and a tool from Kailey's bracelet making kit) to practice putting the braces on. When we got back later, everyone gave him the space and time he needed and eventually he got into the chair and with a little help from Mamma Mia! on my phone, we got the braces put on. We were very thankful to the team who were very patient and accommodating. Unfortunately, we are now dealing with big sores in his mouth and as expected with him and his sensory issues in his mouth, he's not letting us put the wax on or treat the sores. I feel terrible for him and hope things improve soon! 

In thinking about what I wanted to say for this post, there are obviously things that are specific to Colin and where he is at developmentally right now, but that really is true for each of our kids. They all have things that are more challenging than others and I think Chris and I have gotten to a point now where it's all just our "normal". In some ways, things we deal with the other kids are more challenging than what we deal with with Colin! 

It was fun watching Colin celebrate his birthday the other night with his friends from school. I love watching him with them and I love seeing how much they support him and love him for who he is. We truly are lucky to be where we are with Colin in this place, in this town, in this moment with him. Here's to 10 years of loving a truly special little guy! 

Saturday, April 20, 2019

Happy 10th Birthday Colin!

Today is Colin's 10th birthday and I am having a really hard time wrapping my brain around that! I can't believe that this perfect little human has blessed our lives for 10 years! Colin has changed so much in the last year and we are so proud of all of the amazing things he has been able to accomplish. God knew Colin was a perfect fit for our family and he was perfectly placed with us. 

Happy birthday to Colin! We love you so much and we are so thankful for you!