Thursday, January 18, 2018

So Proud of Colin!

My heart has been bursting with pride lately for Colin because I feel like he's been going through such a period of growth lately. One of the biggest lessons Chris and I learned early on with Colin was attention to detail; we learned to celebrate ALL of Colin's progress no matter how big or small. I am so grateful for this gift because we have learned to pay attention to so many things that we have missed otherwise.


He's been doing great lately in school, with his behavior, following directions, compliance, self-advocacy, and just speaking up in general. Here are some of my favorite things I've picked up on lately...

- At bed time last night, he told me he didn't like the new juice box (grape juice) I sent him for lunch and that he DID NOT want that juice box again. (self advocacy!)

- Tonight at Karate, Master Paul (owner of the karate school) went over to Colin and said hi to him and he said hi back like he always does; Master Paul then said "how are you?". Colin said good and then paused and responded with "how are you?" back. I know this does not seem like a big deal but I was so proud of him. That is so huge! (continued communication!)

- When it was time for bed last night, Colin asked to watch the new Beauty and the Beast (which he's obsessed with); I said no and he started to get upset and said "don't talk to me right now, I'm really  mad at you!". (self advocacy! communication!)

- At basketball the other day, Chris observed a few boys bumping into Colin a few times. Each time, Colin would turn around and look at the boys. I guess it happened a few too many times because he turned around and said something (Chris wasn't close enough to hear) and then they stopped. (self advocacy!)

- He's become so funny lately and he knows it!

- He's become such a great reader and loves reading! We've been flying through chapter books!

I wish I could remember all of the little things that have been making me smile lately but I'm SO proud!

Wednesday, January 10, 2018

Disney on Ice

For Christmas this year, Chris and I were trying to focus a little bit on experiences over too much "stuff" and so we decided to get the kids tickets to Disney on Ice. Colin and Kailey had been once before when they were much younger and we knew it would be something that we could all enjoy.



 Shortly after getting the tickets, we were also offered another set of tickets that had become available to my dad and so we went this past weekend with my parents. All 3 kids were really excited and it was talked a lot beforehand. Colin especially, was really excited to go.



While Colin has come so far from so many of the challenges he has faced in his younger years, there are still some things that crop up from time to time that remind me of so many difficulties he has had. One of those challenges that I think will continue to be something Colin will deal with for a long time is his discomfort over the "unknown". He is very comfortable in his routines and structure and although he was really excited right up until getting there, it all started to fall apart about 45 minutes before the show when he didn't know exactly what to expect.




During this time, Colin became very upset and his "go to" response is to ask to go to the bathroom many times. I think that one of the triggers was that it was dark and he didn't know what would be coming out next and it's very difficult to comfort him at this time.



Once the show actually got started, I needed to give him some time to relax but also, be a little forceful in getting him to stay in our section. I knew that once he saw the characters come out that his anxiety would ease some which is exactly what happened. As the show really got going, he started to get excited once again and even waved to some of the characters as they came out. However, there were a few effects that would set him off again and then it would take some time before he calmed down once again.



I am really proud of Colin because as he grows and matures, he is really making so much progress in so many areas. However, there are still times where we are reminded that he still has difficulties that we need to be patient and continue to work through. In the end, we all had a great time at the show and despite Colin's earlier anxieties, he pulled through in the end!



Saturday, January 6, 2018

The 2018 Special Olympics NJ Polar Bear Plunge

On Saturday, February 24th, CAT Crew is going to be making our 9th plunge into the (very) icy Atlantic Ocean in support of all of our NJ Special Olympic Athletes, including our special athlete, Colin! We are so proud of all that our unified CAT Crew team have been able to accomplish through the years and we are hopeful to continue that streak this year in 2018!


This  year, the Polar Bear Plunge for SONJ will be celebrating it's 25th year and is hoping to make this year the biggest one yet! Last year, all of the participants of the plunge helped to raise over $1.9 million dollars and these funds are so important for programming and events for the 25,000 Special Olympic athletes in NJ!


The Polar Bear Plunge is very near and dear to our hearts as our team was created in 2009 shortly after Colin was born by our friend Jorie (our special friend and team historian). In that first year, we raised over $30,000 and were joined by more than 40 friends and family who showed their support. We were so blown away by what all of our people were able to accomplish and so CAT Crew was "born". Each year we find some of the team members who have been here since day one in addition to many new team members that cycle in and out through the years. We all come together for the same cause; to show our support for OUR NJ athletes!


We would love to have YOU join CAT Crew for our 9th plunge! All you need to do is raise $100 ($75 after your $25 registration fee!) to be able to plunge and in addition you'll score some really cool incentives as well! And in all honesty, if plunging into the ocean in February makes you nervous, that's ok too! We'd still love to have you join the team and join us on the beach (but you don't HAVE to jump in)! Signing up is super easy!

1. Visit my fundraising page by visiting: https://give.classy.org/ktobincatcrew

2. From here you can either click "donate" (if this is easier for you than joining!) or the little symbol that the arrows are pointing to in the picture to register and join a team.

3. When you are prompted to register, you select "Join a Team".


4. In order to join our team, search for CAT Crew and then follow the prompts from there!


Please help us to support Colin, but also, the 25,000 Special Olympic athletes competing in NJ with intellectual disabilities! Your support is so appreciated! We look forward to plunging with you!


Tuesday, January 2, 2018

Heading Back Into Routine

When we started taking down the Christmas decorations yesterday, Kailey started sobbing and Colin was celebrating. There is so much excitement around the holidays but this also makes it extremely challenging for Colin being off routine and out of his comfort zone. Through the past few years we have really noticed how much a rigid routine is important for Colin because he is happiest when he knows what to expect and what is coming next in his schedule. Every day he asks us for a list of what he's doing tomorrow and as many days moving forward as possible. He was so happy to go back to school today because he knew it meant a return to his comfort zone. While it takes some adjustment, we are definitely heading back into routine this week!


Monday, January 1, 2018

Looking Back on 2017

It's been an embarrassingly long time since I last posted and in all honesty, I am surprised that I have let this amount of time go by. My brain still thinks in terms of what would make a suitable blog post but there are times that I sit down at the end of the night and I let my exhaustion dictate what I am going to do next. There are also times where I feel like I am ready to write about something that has been on my mind but when I actually sit down to do so, I can't find the words.


When I look back at the closing of 2017 I can't help but think of so many positive things where our steps have moved us all in the right direction. We have had so many wonderful memories as a family this year and even when I look at some of our biggest struggles, I see positive outcomes and successes.


I also see my children growing up right in front of my eyes that seems to accelerate with each passing day. Thanks to technology, I am reminded daily about how much they have changed when photos pop up from a year or more ago. Through  many of the tough days I am smart enough to say to myself that it won't be like this forever (although very tough to do IN the moment).


Our year ended on a wonderful note with the holidays bringing so much joy to our home. It's always sad to see it go with the stark reminders of empty rooms that no longer contain the glow of the lights twinkling in all of the decorations. But, as Chris tried to eloquently explain to Kailey over her tears this morning, there are so many wonderful things ahead to look forward to.



I have enjoyed sifting through photos from the past two months and all of the smiles with friends and families. I am thankful for the opportunities we have had and look forward to all that is yet to come!





Wednesday, October 25, 2017

School - Down Syndrome Awareness Month: 19-25

It's been quite a few days since my last post (which Chris jokingly commented on tonight) and there are a few reasons. One is that I have been wanting to talk about Colin and school since it's really been a long time since I've truly updated on that but I worry about having the words to convey the good place we're in right now. The other reason is simply just life and the exhaustion that comes with being a family that is constantly on the "go".


In Sunday School the other day, the topic was "prayer" and the discussion gave me a really good picture of how much I have grown as a person in the past 8 years. Before Colin was born, I had this expectation of what he would/should be like and it was completely rocked when he was born with Down Syndrome. However, my life was quickly filled with so many "wow" moments when we celebrated accomplishments like rolling, sitting, crawling, walking, talking, etc. that took longer than others to happen but were filled with so much determination. Colin taught us that although the journey was challenging, the outcomes were always worth the wait of getting there.


Because of Colin, we kept raising the bar. We gradually shifted our perspective from "what if he never does this..." to "WHEN he does this..." and the possibilities became endless. He went from being our child with Down Syndrome to just our child. (Side note...I have to sit here and chuckle to myself because we actually went through a phase where we weren't sure if we were supposed to bring up the fact he had DS to anyone/everyone that commented on him being a cute baby/toddler/etc. I vividly remember being in the grocery store and after someone cooed over my cute baby thinking, do I tell them?) We enrolled him in a typical daycare, he attended our church, had playdates with our friends' kids, and did everything you would typically do with your child.


When it became time for him to transition to the pre-k program in the district, we made decisions based on our expectations for him and his future. We knew that we wanted to continue to build on skills that were challenging for him but also prepare him for an academic future that included learning among his typical peers in a general education class. There were many bumps in the road in setting that up for Kindergarten, but September of 2014 came around and he started in a typical Kindergarten class.


If you have followed our blog for a long time, you have probably read many posts over the course of a few years that were written out of pure frustration because of the resistance on behalf of the district to Colin's placement in a typical classroom. These posts included difficult meetings, frustrating phone calls, and then eventual due process hearings (twice). We spent tons of money advocating for Colin because we knew he was capable. In the moment, it was often overwhelming and emotional but Colin himself kept moving us forward. Despite the biggest challenge (the district as a whole), we started to see so much positivity that came from staff he was working with and from Colin as he really began to mature. Even though there were so many roadblocks, there were many more reasons to keep moving.



This school year has been the first time we feel like we can completely let go of a lot of the anxiety now that we have resolved things with the district and he has remained in a placement that he has been incredibly successful in. We are so happy and thankful for his school community; for the staff who work so hard to facilitate success, his peers who accept him for who he is, the parents of his peers for treating him just like one of the kids, and for this place that he is excited to go to every day. He feels safe, cared for, and encouraged to do his best. We are so happy.

At his annual checkup today, the doctor asked how school was going and my response is a standard one these days; school is great. She made the assumption he was in a self contained class and when I told her he's in a typical 2nd grade class she turned to Colin and said, "wow Colin, that is so wonderful! You are doing so great!"

I have to say a regular prayer of thanks because Colin continues to be the one to show us all that there is so much possibility when he is given opportunities. I am so proud of all of us for working so hard to get to this day and thankful I can look back to see just how far we have all come. There will always be challenges but Colin reminds us to keep pushing through to get to the other side.

Wednesday, October 18, 2017

Some Simple Reasons for Inclusion: Down Syndrome Awareness Month (18)

For several years now, I have spent a LOT of time talking about the reasons why we have pushed so hard for inclusion. Most of the posts on this topic have mainly included the academic and social reasons behind this but there are a lot of simple reasons as well. These are simple things he has "picked up" just by being around other "typical" 2nd graders (or whatever grade he's been in at the time).

Example #1: This morning while I was helping Colin get dressed for school, he started doing the motion of sticking his hand in his armpit and flapping his arm (like a chicken wing) up and down. He told me his friend "L" did it at school. This was the first time I ever saw Colin do this so I asked him if "L" made a noise while doing that. He said yes and that his teacher told him not to do that anymore. I told Colin it's not something we do at school (but inside I was totally laughing).

Example #2: There have been a few words that Colin has "thrown around" that aren't words we use at home and aren't exactly appropriate (loser, stupid, etc.). We obviously don't approve of him using these words and have addressed them immediately. Colin definitely understands which words he should and shouldn't use and so occasionally  when he's not thrilled about something, he will actually mutter a somewhat inappropriate word under his breath to "try it out". I know he knows it's not appropriate because he completely understands saying this word quietly (almost as a whisper). I will then say to him "excuse me?" and he always answers by putting his hands up and saying "never mind, never mind!".

After laughing about these two examples tonight while writing this post, we tried to come up with some other examples but there have been so many that are so simple that we were drawing a blank. Every time something like this happens with Colin we can't help but (sometimes discreetly) laugh about it because we know they are things he's picked up just by being exposed to all of the "typical" things kids do. One of my favorite things his teacher said to us at a meeting we had a few weeks back was "we don't feel the need to tell you every little thing that happens at school because sometimes it's just Colin being a typical 8 year old boy!".