Wednesday, March 20, 2019

2019 World Down Syndrome Awareness Day

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!

Tuesday, March 12, 2019

Happy 8th Birthday Kailey!

Today our beautiful little girl is turning 8! We are so incredibly proud of the kind, caring, ambitious, hard working, fun loving, and special young lady she is becoming! I feel like she has changed in so many significant ways this year but most especially, in taking on the role of "big sister" to both of her brothers. She is helpful and supportive, patient and loving, and cares to always do what is right. She works so hard in school and the activities she participates in. We love watching her take on new challenges. We can't wait to see what this year will bring for her. We love you Kailey! 

Happy Birthday to you!!

Sunday, March 10, 2019

Brick Township Hero Awards

Chris, Colin and I experienced a pretty defining moment in our lives last week when we found out that Colin and his paraprofessional, Mrs. N had been nominated and selected as Brick Township Heroes at the 5th Annual Hero Awards. They were nominated by their school principal as a "dynamic duo" because of the ways in which they complement each other. We were so grateful that all of their hard work over the past few years was acknowledged and that we were able to honor BOTH of them that night. 

Ironically, the following image happened to pop up in my memories on Facebook around the same time of the awards night which was posted not long after we had come off of a very frustrating IEP meeting in our continued fight for an inclusive education for Colin. 

We could only hope at that time that this would ring true for all of us, especially as we truly believed in our hearts that this was best for Colin. We were fighting an administration at that time that did not believe a child like Colin could be educated in a general education classroom. When Colin repeated Kindergarten after our first time in court, Mrs. N was placed with Colin and she, along with his teachers that year, were our "game changers". We knew immediately that Mrs. N was the perfect fit because she was, and continues to, push him to be as independent as possible while learning alongside his "typical" peers. She knows and understands him which means that when he leaves us, we know that the expectations we have for him are followed through at school as well. We have so much love and respect for Mrs. N. because she works so hard to ensure Colin's continued success at school. 

As we have learned, the only way an inclusive education will work is when a school community embraces the philosophy that any child can be successful in a general education classroom when given the right tools. Despite the struggles in the very beginning, and thanks to many wonderful and dedicated students/friends and staff, Colin's education had spiraled to become something I could only have prayed it would become. I LOVE our school community and the people in it; I love the "game changers" who believed that Colin has a rightful place in their classrooms, who nurture his gifts, and have allowed him to be as successful as he is. My heart bursts with gratitude that my child with Down Syndrome has a rightful place learning alongside his typical peers, that he has made meaningful friendships, and has found a community of people that only want what is best for him. 

The night was an amazing night and I was so happy to be there to celebrate ALL of the heroes that were nominated and selected as heroes. It was important for Colin, Kailey and Cody to be there to see what wonderful things all of the nominees did for their community. Colin and Mrs. N had several staff members come out to see them receive their award; I can't tell you enough what an impact Colin's team this year has had on him. 

Going into the night, Colin decided on his own that he wanted to write an acceptance speech. He was the only one that spoke and he told me what to write and I typed it up for him. He practiced and was ready to go once his name was called. There were several things that stand out to me about that moment; one was that he took Mrs. N's arm to escort her up and two, that he felt it was important to thank her for "being the best". I also love that he was concentrating so much on reading his speech that I think he was practicing while he was up there receiving his award!

For Chris and I, this night was such a reward for the journey we have all been on. We have all come so far from where started; it makes this all feel that much more rewarding. Colin's school community is the "beautiful destination" we had hoped for and that is because of the dedicated, hard working, and LOVING staff and students that fill those walls. I wish there were words to truly explain what is on our hearts. Colin is the person he is today because of his team behind him. 

...Mrs. N, you truly are a hero. You are the game changer. You push him to be an independent learner and you push him to be the best he can possibly be. I wish thank you was enough! We love you! 

Thursday, March 7, 2019

Saying Goodbye to Grandma and Explaining Loss to Kids

This past weekend we found out that my Grandma had passed just shy of her 93rd birthday after battling Alzheimer's for some time. She has been such an important person in my life as well as my kids' lives so although it wasn't a complete shock, loss is always hard when you love someone as much as we all loved my Grandma. Chris and I discussed the fact that we were going to need to tell the kids and I wanted to do it early enough on Sunday so that they would have time to really process before school on Monday.

To my kids, she was "Great-Grandma" and I knew they would be impacted by her loss just as much as I was. When Chris and I sat them down, we tried starting by explaining that she had gone to heaven. After some clarification for Kailey, Cody turned to us and said "so, she's dead?" and we couldn't help but laugh at the bluntness of his question. All were emotional as expected but they also carried lots of questions that were challenging for Chris and I to answer. 

I was worried and stressed for a few days about what we should do with the upcoming service for her. They had been to the church service when my other Grandma had passed years ago but this service was going to immediately follow the viewing and I wasn't sure how we would explain or how they would handle an open casket. We felt pretty strongly that it was important for them to be there for the service to have an opportunity to say goodbye. As much as all parents have this feeling of wanting to shelter their kids from pain, we also believe that loss is a part of life and if we give them the tools to handle it, then we can't totally shield them from all of the discomfort. Despite this, I was still pretty worried. It turns out, I didn't need to be as they handled the day as well as can be expected. They hung out in a different room during the viewing, sat with our family during the service, and each made their own choice about whether they wanted to come with us to say our last goodbyes. Kailey opted to go back to the other room but the boys wanted to come with us to say goodbye. Each child handled the day slightly differently, Colin offering comfort to others, Kailey being more of the emotional one, and Cody asking lots of questions. I was really proud of them for being there with us to say goodbye. 

In loving memory of my Grandma...