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!
School was back in session for all of us on September 5th and while it was hard to say goodbye to summer, we were all ready to transition back to a time of regular routines and schedules. We mapped out a plan on a white board so everyone knew what they needed to accomplish on the first day before heading to the bus stop. We continue to use that daily to help all of us with what is on our agenda for the day ahead.
What made the start of this school year especially exciting for everyone was the fact that Cody was going to be attending the same school as Colin and Kailey. He was so excited to join them (although also quite nervous) and he was ready to get up and get going on the first morning before school. This year, I went out at 10pm the night before to make the chalk drawing in the driveway to save on time in the morning. It's funny because the chalk drawing started one year because I didn't have any signs for the kids to hold and I liked it so much that I continue with it each year.
Overall, the transition for everyone has gone pretty smoothly, but they all handle the exhaustion that comes with the new schedule very differently. Colin was thrilled to head back to school knowing that he would see his friends but also because he would have the same paraprofessional and special education teacher again in addition to his new general education 4th grade teacher. He was SO excited that he came to my bedside fully dressed and ready for school...only, it was 1:00am. He was so adamant that he was ready that I couldn't get him back into his pajamas and he slept the rest of the night in his school clothes. As we start the 2nd full week of school, he wakes up each morning ready to go, follows his checklist (better than the other two), and happily anticipates the start of the day (especially when he knows what he has in front of him). Some of the more challenging things we face with Colin currently have to do with some new behaviors that have started to pop up as he starts to transition into that "tween" phase. There is some talking back, easily getting frustrated when things don't go his way, and some physical behaviors (primarily amongst siblings - he certainly isn't the only one). It seems to (thankfully) be a mostly "at home" issue but I am trying to talk to him about strategies he should be utilizing more so than some of the ones he is choosing. I see that some of the behaviors are more enhanced after school when the exhaustion starts to set in; it seems the exhaustion makes him more irritable. I am hoping that as September progresses on, these things will start to "die down" a bit.
Kailey was also very excited and ready to start school. She was happy to start the year with a new teacher and generally has transitioned incredibly well to the start of the year. While she is also tired and exhausted at the end of the day, especially with her activities schedule, she handles it a lot better behaviorally than Colin and Cody. The biggest challenge we face with her is just a general lack of paying attention/following directions. She can become "spacey" and will immediately forget a task asked of her moments after being asked because she is not totally focused on us. She is the busiest with Karate two nights a week and soccer three days a week (one of them being a weekend game day) but is really enjoying being involved in those activities.
Cody is such a big boy now that he just turned 5 and is in Kindergarten. He loves his teachers (he has a co-taught class with a general education teacher, special education teacher and paraprofessional) and is constantly telling us about different classmates that are his friends. He is excited to tell us about all of the things he is learning and all of the teachers that are "looking out for him" that know Colin and Kailey. The first progress we received noted some minor behaviors that we need to work on with him, but overall it was very positive. On the surface he is transitioning pretty smoothly but he is so tired at the end of the day and that is when we see the most challenging behaviors. He can easily be set off into being upset if something does not go his way and it's hard to get him to transition to some of the activities he needs to attend for Colin and Kailey. I know this transition period can take several weeks, but I do hope we start to see a bigger change for the positive soon. The plus side though is we very rarely see visits from him after bedtime!
As with any change in routines, it is always an adjustment and we are trying to work through it together as much as we can. There is a lot to manage with both of us working full time, getting the kids to all of their activities (sometimes multiple on the same day; thank goodness for helpful friends and family!), making sure the house doesn't full apart, everyone is fed WHILE eating together at dinner, and getting to bed at a normal time with each getting time to read. I often feel like I am running from one task to another to stay on the "schedule" (it can be a flaw of my personality) but we're getting there the more "normal" this all becomes.
We are hoping for a very successful year for all three of them and look forward to the year ahead!
It's so hard to believe that our little boy is turning 5 today! It feels like just yesterday we were anxiously awaiting his arrival (which came 10 days late) and welcoming him into our lives. As the years have gone by, he has become such a loving, determined, spunky, playful, full of life, fun-loving special guy and we are so thankful he is a part of all of our lives. The toddler years were difficult because he has always desperately tried to keep up with Colin and Kailey and has gotten very frustrated when he is unable to do things the same way they do. But this determination is also what makes him willing to try anything and is not afraid to do so either. We are still going through a new transition period as he just started Kindergarten last week, but we are so happy that he is loving school, his teacher, and making new friends on this journey. We are so proud of him and greatly enjoy watching him grow. Happy 5th birthday, Cody! We all love you so very much!
Last weekend brought with it the official end of summer as we transitioned into a new school year. This year was particularly bittersweet for me because although we were ready to have structure and routine back in our life, we were not quite ready to let go of the amazing summer we had this year. Our summer was filled with lots of adventures with family and friends, plenty of sun and our favorite place, the beach. I am grateful for the memories we made together as a family and greatly appreciated the time we spent together. It is always hard to say goodbye to summer!
The end of this school year also brought a very big change for all of us as Cody finished pre-K at Good Hands Childcare Center, a place we came to love very much. Cody's end of the school year came in two parts which included the end of the year show and his very last day of school. Both of these events left us feeling very emotional for lots of reasons but primarily because it was evident that our little boy was also transitioning from toddler into "big boy" status. It has been no secret that Cody can be our difficult one but although things are not always easy, he has changed a lot over the course of the last year in so many positive ways.
I think what has always been so difficult with him is that since he was a baby, he has been desperately trying to keep up with Colin and Kailey. Because of that we saw him accomplish skills this year like teach himself to ride a bike without training wheels, he's been fiercely independent, and he wants to do things his way. In the beginning of the year, he was much more likely to handle things that didn't go his way with crying and/or tantrums and although we still see that at times, it had vastly improved by the end of the year. We have been questioned at times at why we are sending him to Kindergarten when he won't turn 5 until mid-September and the reason why is because we absolutely KNOW he is ready. Although he will be a young Kindergartener, we know (based on experience) what readiness skills are needed and Cody definitely has those (again, due to his personality in trying to keep up with the others). We also know this because we are grateful that Cody had a very special pre-K teacher that helped him to prepare for this upcoming transition.
It was so much fun to watch him and his friends at the end of year show. As always, the staff and students put on such a great show with a great theme and we had so much fun watching Cody up on the stage. It was very clear to us that he greatly enjoyed himself.
A few days after the show was Cody's last day of school, but also, our family's last day at the school. This was emotional for me because we started Good Hands after having already been at a daycare we loved and after we had a rough experience with Colin in a place he attended for a very short period. When we first met with the owner of the school, I remember asking about having a student with needs like Colin's and there was no hesitation in her voice when she said she would be happy to have him. We have cared for all of the teachers that have had all of our children because of how much they loved and supported them. Choosing a daycare facility can be a very difficult process because you want to find a place that will care for your children in the same ways you would if you could have them at home with you. We have trusted the women who have cared for the kids with our whole hearts and we know that they all had a significant impact on the development of our kids as they transitioned from babies to toddlers and then to children. Saying goodbye was difficult and there were LOTS of tears shed on our end but I am so grateful for all they did and for our wonderful experiences while we were there.
Cody has had the hardest time because although he is excited at being a big boy and going to Kindergarten, I think he's nervous about leaving a place he has been comfortable at and the only place he has known (he started when he was 4 months old!). I know he will be fine once the time comes to get on the bus with his brother and sister but just like anyone, the anticipation can be difficult!
It is so hard to believe our "baby" is going to Kindergarten! However, nothing excites me more than having all 3 of our kids in the same building for 2 whole years!
I have been seriously negligent in keeping this blog up to date and I was reminded of how important it was to me recently when I had the opportunity to meet up with some friends I met through the blog 10 years ago. With the rise in the use of social media (especially for me), it has become easier to put up a quick post on a day to day basis then to sit down and put thought behind the things that I feel and want to say. If I look back even a few years ago, I was posting on an almost daily basis about the things that were happening. In the beginning, the blog was a designated to share specifically about Colin having Down Syndrome but as time went by, it was such a part of our normal life that it was actually almost hard to find things to talk about related to that. The posts have become so few and far between and I need to, if only for myself, get back in the wagon to continue to document our journey.
The end of this school year saw Colin finishing up 3rd grade, Kailey finishing 2nd grade and Cody (which will be in Part II), finishing up pre-k. We were so fortunate because it was another great year for both of them and their teachers played such an integral role in the progress and successes they had throughout the school year.
It's always so amazing to me to look at the beginning and end of school year photos to see how much the kids have changed physically, but then to recognize all of the other ways in which they have grown and matured as well. We were so incredibly grateful for Colin's team this year, comprised of a general education teacher (Kailey had her in Kindergarten), a special education teacher we hadn't had before (A-MAZING), his paraprofessional he has had for 4 years now, a physical therapist, occupational therapist, speech therapist (all therapists that have been with him for 5 years), case manager, various specials teachers, and a principal who continues to support him in so many ways. In school, Colin has classmates that recognize his differences but support and love him for who he is and allow him to feel safe and happy. We saw academic growth in many areas but continue to push through the most challenging areas to find ways that will allow him to make growth. His behavior has been "typical"; this year brought us some new things to work through which has primarily been the transition to "pre-teen". At times it was funny to laugh at (without him noticing) the things he would say when "talking back" but also frustrating because although they are "developmentally appropriate", handling them often times takes different/repetitive approaches. He remained involved in various different sports activities throughout the school year both with his typical peers and in communities with other athletes with special needs. Overall, he had a really great year and we are grateful for that!
I am really proud of Kailey and how much she has grown and matured this year. She had a teacher we all adored (she was Colin's 2nd grade teacher last year) and Kailey so much so that she cried when the year ended because she was going to miss her so much. She did really well academically and in all honesty, we don't have to worry so much about that with her. She cares about doing well but appropriately so. We are grateful because she has a nice group of friends that she enjoys to spend time with. This year we saw a lot of changes in her because of our discussions related to Colin having Down Syndrome, which in turn, led to a lot of talks about differences and disability. We saw so many wonderful things out of her because of this new understanding and many instances of her being kind. What I love about our school community is that even though it's small, and Kailey is only a grade behind Colin, she has her own experiences, is her own person, and loves her school and where she is. This year, she has increased her involvement in different sports activities. She joined a travel soccer team and made a lot of growth playing defense (sometimes goalie!), she continued with her quest for black belt in Karate, completed a basketball clinic, and tried softball for the first time. She is becoming an athlete and I love that about her. At times she is still shy and bashful but I hope to see this change as her confidence continues to grow.
While we are so proud of both Colin and Kailey for all they have been able to accomplish this year, we know they are able to have the successes they do because they feel safe, supported and loved in their school community. I can't say enough how much I love their school and how thankful I am for that. It's been an awesome 2018-2019 school year!
"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
