Thursday, January 12, 2017

The Struggle is Real

At my regular checkup this week at my OBGYN doctor, I had the midwife in the group who was at the hospital with us when Colin was born. No matter how much time has passed or the details that have filled my life since then, I can still remember everything vividly that transpired the day he was born. We spent some time discussing that day and how much has changed since then while looking through pictures of Colin, Kailey and Cody.

Throughout the pregnancy, Chris and I had prepared ourselves to be first time parents but were not prepared for all of the "extra" that would come with Colin's diagnosis of Down Syndrome. There has always been something to worry about and back then it was essentials of life; maintaining his body temperature, eating enough and ruling out any major health complications that he could have been born with. When we got through those humps, then it was worrying about developmental milestones like when he would track toys with his eyes, sit up, crawl, walk, play with toys appropriately, have enough communication to socialize, learn the alphabet and counting.

In the school years, we've been worrying about things like making sure he has appropriate behavior, constantly worrying about academics in all areas, potty training, keeping him involved in activities that are highly motivating, and the glaringly obvious stressor in educating Colin in an inclusive environment. We work through sensory issues, anxieties, physical challenges, minor health issues, and appropriate behavior on a daily basis. Being a parent of a child with special needs is different than being a parent to a child without; this I know because I am both. Since that first day, it has always been a steady stream of people giving us information about Colin that always leaves us feeling uncomfortable from doctors, nurses, therapists of all types, teachers, bus drivers, paraprofessionals, etc. Imagine what it would feel like to always be reminded of the daily struggle by highlighting the things that just aren't going perfectly. That in itself is stressful walking the line between what is a struggle due to Down Syndrome and what is him just being a 7 year old little boy. Chris and I can understand that this information is meant to be helpful but it is always a constant onslaught of "what  needs to be fixed".

Life with Colin is really challenging in that we work really hard to maintain and improve ALL aspects of his life. We want him to be the most independent and successful little person (and eventually big person!) that he can be. This can feel overwhelming at times because he needs a different kind of attention than Kailey and Cody need. There is always the communication with school and the time spent maintaining and practicing skills (homework and his extra practice takes a long time), problem solving on how to help the bus driver (he wants to be social but needs reminder on appropriate socialization/following rules), and our list goes on.

Identifying and talking about the struggle does not, however, diminish how rewarding our life is with Colin. We feed off of the positives we do get from all of those professionals I listed before and keep our eyes open to all of the ways in which we see Colin grow and make progress. There is nothing I love more than sitting with him each night and listening to him read. I am in awe each night that he is reading so well. Everyone that has helped Colin get to THIS point should be so proud of what they have helped him to accomplish.

He has come so far and Chris and I are so proud of him for how much progress he has made in life. He's not the little baby who struggled to drink 2 oz. of formula and keep his body temperature up all of those years ago but rather, a determined little boy who makes progress every no day no matter how big or small.

I thank God every day for giving us this gift; he's so worth the struggle to help him become the best he can be.

Sunday, January 8, 2017

Will You Plunge With Us?

February 25, 2017 will mark CAT Crew's 8th Special Olympics New Jersey Polar Bear Plunge in support of Colin and the thousands of other athletes that compete throughout the state. We can now officially say that we have raised over $300,000 since we began plunging and we are so proud of what our family and friends have accomplished.

Our friend Jorie created our team shortly after Colin was born and our success the very first year connected us to the then president and his wife who was running the Young Athlete Program. When Colin was two, he participated in his very first Young Athlete event despite the fact he wasn't quite walking yet. The program has played an integral part in Colin's social, emotional and skill development and we are so grateful for all of the connections we have made because of it.

This year, we are asking for help in raising money for Special Olympics New Jersey so that athletes like Colin can continue to train and compete in sports they love.

We would love to have YOU join our team! If the cold temps scare you, no need to worry because we are just as happy to have you a part of our team to help us (without actually going in the water)! All you have to do is raise $100 and in doing so, you earn cool incentives!

Event details:
Plunge date: February 25, 2017
Plunge time: 1pm
Location: Seaside Heights, NJ

To register for the plunge and join team CAT Crew, click HERE.
If it's really not your thing but you would still like to help support our efforts, then you can click HERE to go to my donation page and make a donation. ANY amount helps!

Please help us support our New Jersey Special Olympic Athletes!

Tuesday, January 3, 2017

The Owl

Prior to Christmas, we received a notice home from school that they would be doing the holiday shop once again so that the students would have an opportunity to shop for family members and have it wrapped when shopping. On the form, you select a price range and specifically who you wanted your children shopping for and that would aid the volunteers in guiding them towards a gift in the price range they were allotted. The holiday shop was going to span 2-3 days and so I sent in the forms with Colin and Kailey each with $10 to cover two siblings.  

Kailey went with her class on the first day and came home with gifts for Colin, Cody, me, and Chris and me together as well as $5 in change. She hid the gifts with the babysitter and when I got home, was excited to show me where her hiding spot was. She was also asking what Colin had purchased and when she found out he hadn't gone yet, very excitedly discussed this owl she saw that she just loved and asked Colin to purchase it for her. I explained to her that it's not right to ask him to buy her something (as that is not the whole purpose of Christmas) and that it really was up to Colin to pick something he thought she would like.

From then on that night and the next morning, Colin was adamant that he was going to buy the owl for her. I sent in a note to his teacher telling her that I wasn't sure if the owl fell in the price range, but I was pretty confident he was going to want to buy it for her. I was happy the teacher made a decision that helped us out in letting Colin buy the owl which turned out to be $10 itself because when he got home, he was really excited to tell me that he got her the owl. I had to send in a bit more money the next day for him to get something for Cody.

It made us laugh in the end the price differential among the gifts and even harder when we realized that Kailey's gift for Colin was a rubber ducky. However, nothing could take away from the joy we saw on Colin's face by giving Kailey a gift she loves or the joy on her face because of receiving something from Colin that made her so happy.

Monday, January 2, 2017

Returning to Routine

Tomorrow we return back to our normal routine and with that comes disappointment that the season of "magic" has come to an end but also, some relief too. This year has been like many others in which we spend lots of time with family and friends, eat/drink way too much, participate in many holiday traditions, but also, make so many memories as a family. The kids have brought back so much excitement and the time spent between Thanksgiving and New Years is packed with so many fun activities.

However, having a child who has difficulties when his normal day to day routine is disrupted and some anxiety over anything that's "different" (and really, so many things fall into this category) that it can be difficult, especially over the holiday break. Colin is a child who relies on the comfort of knowing what comes next every minute of every day and when that changes, it's hard to know how he might react or handle it. Most of the time, he can adjust fairly well when highly motivating activities and people are involved. There are also many variables that can make any activity challenging (even when it is going well) like sounds, pets, things that make him frustrated, or when others aren't doing what he expects or thinks they should be doing. This anxiety is often evident when he cries, yells, gets very irritable, or even swats/pushes someone. Many times, these things from an outsider's perspective just look like he's cranky, having a meltdown/tantrum, or even not being very nice. While we understand most of the time why he might react the ways that he does and do the best we can to work through it, it can be very frustrating on our end because we can't always "fix" it. Sometimes, the best solution to the problem is just to have a normal routine back and so there is a part of me that is looking forward to returning to that again tomorrow.

It certainly has been a wonderful holiday season and I am so thankful for all of the memories that we were busy making. The end of the holiday break, the removing of the decorations, and the return to the sameness always makes me feel a little bit sad, but with an end always comes a beginning and I am optimistic for all that lies ahead in 2017. Cheers to a happy, healthy and fun new year!