"In ancient Rome, the Gladiators went into the arena with these words on their lips: Let me win, but if I cannot win, let me be brave in the attempt. Today, all of you young athletes are in the arena. Many of you will win. But even more important, I know you will be brave and bring credit to your parents and to your country. Let us begin the Olympics. Thank you."
In 2013, Colin participated in his very first Special Olympics Summer Games as a young athlete and this past weekend, Colin ran in his first track races as an official Special Olympic athlete. It is hard to articulate just how amazing the weekend was from the opening ceremonies through both days of competition. We are so proud of all of the many wonderful things that Colin was able to accomplish (2 bronze medals for the 50 meter dash and the 100 meter dash and one 6th place finish for the 4x100 relay) but we are even more proud of the athlete that Colin became. He stood up on the medal stands and supported all of the other competitors and that means more to us than any medal he could ever earn. There were so many moments that I was fortunate enough to witness of people being amazing human beings and there was just so much good that was happening.
If you have never had the opportunity to attend a Special Olympics event, I urge you to give it a try.
"If you seek joy, come and see the Special Olympics. There can no longer be any doubt that people with intellectual disabilities can achieve anything." - Eunice Kennedy Shriver
I've been sitting on this blog post for the past week and every time I sit down, I can't find the words to adequately describe how I have been feeling. I thought that it would be fitting on the eve of teacher appreciation week to finally say what's been on my mind all week.
This past week was Colin's annual review IEP meeting in conjunction with the discussion of his reevaluation testing. Although we were confident going into the meeting because of how well things have been going, there is still always a certain level of discomfort going into any of these meetings and as always, we were feeling it. In fact, Chris and I both commented that even seeing "see you tomorrow" in an email prior to the meeting gave us "that" feeling. Back in the fall at a meeting, Chris and I were presented with reevaluation testing for Colin which included an IQ test by a school psychologist (his case manager), an educational test by an LDTC (learning disabilities teacher consultant - someone from a different elementary school) and a speech evaluation by his speech therapist. We deliberated over this for over a week because we felt like deep down we did not want it to be done (specifically the IQ test) and talked to/read in blog posts the perspectives of many different people in different positions. While there were many pros and cons our list, we ultimately decided to consent to all testing for several reasons. The primary reason was that over the past few years, things have grown increasingly more positive with our team working with Colin and we felt that no matter what the results were, his team would continue to look for his strengths and would not use these test results as any defining piece to who he was. Leading up to the meeting, we had received the results to all of the tests and in all honesty, we really just skimmed through it all and focused on the positive pieces we could take away.
One of the positive changes that the district has implemented over the past year is giving families an agenda for the meeting at the start. This is a simple tool to knowing what is coming and when throughout the meeting. Our meeting included our case manager (school psychologist), the LDTC from the other school who did the educational testing, the school principal, general education teacher, special education teacher, physical therapist, occupational therapist, and the substitute speech therapist. Our meeting began with the results of the testing that was done and everyone highlighted Colin's strengths. While there was some discussion on where he did not do well, this was not of course, the focus. Many years ago, this would have had a far different effect on me, but I know more than ever that these tests do not give the most accurate picture of who Colin is or what he is capable of.
Once we got through the results of the tests, the meeting turned to what I enjoy the most, listening to the members of Colin's team share all things related to the progress he is making. Colin is making SO much progress academically, socially, and personally and there is nothing more exciting that listening to Colin's teachers and therapists share that with us. Chris commented how amazing it is to listening to the teachers feed off of each other in their excitement of what techniques and strategies they are utilizing with Colin and what they are finding is working with him. We also LOVE listening to their stories about him in school and in all of the ways his personality shines so bright there. He's a funny guy! They work SO HARD for him and Chris and I couldn't be happier to be in this moment with this school community of people who love and care for our special little boy.
On Tuesday when I went for a run after the meeting, I was reflecting on this journey we've been on over the past 10 years, particularly, our journey with including Colin and what popped into my mind made me laugh to myself. I started thinking about a flash mob; at first, there is just one person that starts dancing to the music, and then one after the other more and more join in until there is a large group of people dancing together following the original one who started it. When we first started pushing to have Colin included in elementary school, we felt so alone and often questioned whether we were making the right decision. We were that lone person that starts the flash mob. Over the past 2 years, Colin's team has strengthened so immensely and there have are so many people who are truly behind him that our hearts are filled with so much gratitude. There is so much progress and Colin is a valued, contributing, and special member of his school community because the staff at his school have made it that way. He is included. Our flash mob is filled with so many people dancing together behind Colin because we support and love him so much.
There is absolutely no way to express just how thankful we are for that. We are still coming off of the high of another amazing meeting thanks to an amazing IEP team!
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!
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!
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!
I was in the midst of getting ready for World Down Syndrome Day earlier today with Colin when I opened the folder in his backpack and came across the Educational Evaluation report we consented to a few months back. As I read through the report, I couldn't help but reflect how far I have come in this journey from where we started. In the past, I would have cried over the actual results over the test and admittedly I did cry today. I cried, however, because I was proud of what he was able to accomplish. I cried the most over comments like "...was friendly and spoke respectfully", "...completing to the best of his abilities", "...appeared confident in his skills and responded well to positive feedback". No longer are we the parents who are stunned and scared at a diagnosis we thought we didn't deserve (how it pains me to even say that out loud). We are not the parents who cry over reports that show weaknesses (not that it's always easy to read over those reports, but we have a different feeling on them now). We are parents who are so proud to say that Colin is our son, Colin has Down Syndrome, and we are so thankful for this gift he brought to our lives. He is amazing!
World Down Syndrome Day is held on March 21st (3/21) to represent the three copies of the 21st chromosome that individuals with Down Syndrome have (instead of a pair of chromosomes). People all over the world wear bright, colorful, mismatched, crazy socks to represent chromosomes, and the ways in which those chromosomes make all of us unique and special.
Our family will be celebrating tomorrow by rocking our socks but we will not only be celebrating Colin, but also, the friends, family, classmates, teachers, coaches, instructors, and community members that support Colin by demonstrating acceptance and inclusion for everyone!
We are so thankful for Colin and are so incredibly proud of him for the progress that he makes daily to be the best little boy he can be. We will celebrate diversity, acceptance, inclusion, and most especially LOVE on World Down Syndrome day. Let's see you Rock your Socks!
