Something that often comes up with families who are facing a new diagnosis of Down Syndrome is questioning how the rest of the family will be impacted. Chris and I wondered that very same thing but the bottom line is, Colin is such an important part of our family.
One of the things we have known for a long time about Colin is that he functions best, is happiest, and his behavior is the best when his day is scheduled and he can anticipate what's going to happen next. Because of this, I feel I have become a bit obsessive about our schedule and making sure we stick to it the best we can every week. We have created daily visual schedules, visual schedules for smaller chunks of time, we talk a LOT about each day and what will be in it and we even schedule out an chunks of our days for Colin so he knows exactly what he will be doing. When we are all at our best and things are going as planned, Colin is also doing his best (for the most part). However, we are finding this week and last that because of extra days off, it is throwing him off and he is having a harder time returning to normal routine, especially since he has mostly been home with Daddy on these extra days off. Today was the most challenging so far after school because he was exhausted and off routine and was really showing it through his behaviors. As nice as it is sometimes to have time off, it is really hard for someone like Colin who depends on regular routines to feel at his best.
Our goal for Colin is that one day, he will grow up to be an independent young man to the fullest extent possible. Our hopes and dreams for him include some type of college program (there are so many like this one popping up all over the country - and it happens to be Chris' alma mater!), a career, and living on his own. In order for these goals to become a reality, we feel that it's extremely important, even now, to be working so hard on skills that require Colin to be independent. Whenever possible, we encourage him to do things for himself and he is most proud and confident when he is able to do so.
One of the stereotypes associated with people with Down Syndrome is that they are happy ALL of the time. And while overall Colin is a very happy 7 year old boy, there are many times that he is angry, upset, sad, frustrated, discouraged, annoyed, hurt, disappointed, or mad just like any other little boy. When his expressive language skills were lacking more so than they are now, he would often display these emotions in other ways. However, we are starting to see now that as he continues to develop his skills in this area, he is able to just verbally tell us he is feeling any of these emotions. One day over the summer, Colin was insistent that I sit in a certain spot at the table when he was finishing up a dinner he had previously left behind. I was firm in that I was going to stay where I was. After going back and forth about it a few times, he all of a sudden burst out (half teary half yelling) "I'm so angry with you!". I was so shocked that he actually told me how he was feeling that I was cheering for him and telling him how proud I was. In that moment, he seemed a bit surprised, especially as I came and sat exactly where he wanted me to. We still don't hear him share these emotions that often, but when he does, we are sure to celebrate.
Colin has always had to get blood work done often to monitor his regular cell counts and also because he has been very anemic in the past. We have cycled through years where he's handled it very well and other years where I would have to hold him in a bear hug. He's always been tough when it comes to this stuff because even if he cried, it was only every for a few minutes. Today, however, was a big day. When we left home this morning, all he knew was that he was going to the "doctor". When we pulled up at the lab, he knew where we were and he automatically asked if he was "getting a shot". When I told him yes, his nervous face popped up but he immediately told me he'd be brave. When it came time to go to the back, he was adamant that "he do it himself" and so he sat down in the chair and never needed me at all. He didn't cry once. He was so brave and strong through it all today. I'm so proud of this guy for his strength through the years.
Recently in one of my "memories" on Facebook, it reminded me of a post I wrote after Kailey was born about the sibling relationship I was waiting to blossom. After Kailey was born, it actually took a long time before Colin would even acknowledge that she was there. We slowly watched as their relationship developed into one in which they became friends.
After Cody was born, the transition was a lot easier. We have gone through phases where Colin may not be as patient or understanding of some of the things Cody does, but overall, he really cares for his little brother and we often find sweet moments of him helping, or talking to, or just loving, Cody.
Much like any sibling relationship, there are days that are challenging, but there are also many days that make us so happy to watch them interact with each other.
When Colin was only a few months old, Chris and I decided to enroll him in a parent and me swim class because we wanted him to feel comfortable in the water. The beach was always such a big part of our life and we wanted it to be a part of his life too.
We found at a very early age that Colin was really fond of the water and for as long as we can remember has really not had a fear of any kind. This has been really good and scary at the same time. He feels really comfortable in the water and we have watched the reactions summer after summer from many bystanders as they watch him in the ocean. Even before he could really swim he has found a way to be completely in it.
It has been important to us to continue with swim lessons so that WE would feel more comfortable with him being in the water. We were never sure how it would go with him being in an actual swim class because we were afraid since he loved being in the water so much he would not necessarily follow along with what everyone else was doing.
A year ago, we decided to do a semi-private lesson with Colin and Kailey together with a friend of ours who also taught swim lessons. It went well so this past summer, we decided to enroll them both in a swim lesson class. It ended up only being the two of them and one other child but it was a great transition into the class setting. It was so exciting to see how well it went. The biggest challenges were mostly due to Colin's frustrations when he couldn't keep up with Kailey because he'd be yelling at her in the pool when she was "beating" him. He did really well waiting his turn for swimming, he participated, he followed directions, and he did everything he was asked to do.
We found that by the end of the summer, Colin WAS swimming and we were so proud of that!
This also translated nicely to the summer because then we were more comfortable with him being a little bit more independent in the ocean because we knew that if he lost his footing a bit (mostly when it was high tide), he could at least swim enough to get himself to a point he could stand. The biggest thing still is that he has absolutely NO FEAR of the water.
