The Holidays Have Begun

This weekend was a rare few days of family time where we had more time together at home than expected. It was coming off of a nice Thanksgiving together with family and then was the beginning of Christmas time preparations. Each year has been better than the last because of how excited the kids have been and only being a few days into this holiday season I can tell this one is going to far exceed the rest. 

 

 

 

This has been the second year that we attended a breakfast with Santa at Colin's Karate school. All three kids were so excited when Santa walked into the door, but Colin seemed to be in such awe and even ran over to give him a hug, just like he did last year. 

 

 However, despite the fact that Cody was thrilled to see Santa when he walked in the door, he had absolutely no interest in sitting on his lap.  

 

I'm looking forward to the month ahead and sharing in all of the excitement with the kids this season. The holidays are coming!

 

 

2016 Special Olympics of NJ Polar Bear Plunge

On February 20, 2016 team CAT Crew is going to be taking the plunge into the icy Atlantic Ocean for the 7th time in support of the Special Olympics of NJ and in honor of Colin.

 

 



Chris and I are not the same parents we were that first year when we jumped into the ocean when Colin was just a baby. We still didn't know what the future would bring for Colin or even how involved in the Special Olympics he would become. 

 

Colin first started participating in the Young Athlete Program at the age of 2 when he wasn't even walking yet. It was a place for him to continue to develop skills for both life and for the sports we hoped he would play one day in a fun and supportive way. Colin has had so many wonderful opportunities because of this program and we have watched him grow through the years in his participation.

More recently, Colin has started to become more involved in specific sport activities through developmental and clinic programs and the skills he has developed have allowed him to become involved in some community sport programs in our town like soccer and karate.

 

 

 

It is because of events like the Polar Bear Plunge, Colin and many other athletes have directly benefited from the generosity of many people who have made donations. We love being on both ends of this with our participation in the plunge; those who are fundraising for the very programs that Colin is directly involved in.

 

Please help us with the 2016 Special Olympics Polar Bear Plunge!

 

To make a donation to my page, follow this link.

 

To join CAT Crew, follow this link and then click "register" at the top of the page. From there, join a team and select CAT Crew as the team you'd like to plunge with!

Colin and His Apologies



Colin is very much aware lately when he does something he shouldn't be. At home, we use a lot of positive reinforcement but when his behaviors deserve a consequence, we address the behavior and use simple methods like time outs and occasionally, taking something "away" (that could mean not being able to play a game on the ipad he wants, less TV time, etc.). I would say we use a time out most often but I have not allowed him to watch a show if the behavior was more severe (that usually happens when he is most tired like at the end of the night) or play the game he wants.

 



In time out on the boardwalk for yelling at me because I said we were all done with games.

I usually give him a warning if his behavior is nearing a consequence in saying something like "I'm going to count to 5 and if you ___, then you won't be able to ___". It usually gets him to react quickly but if he lets me get to 5, then I have to follow through with the consequence. However lately, he has become smarter in that he will quickly apologize in hopes that he can "get out of" the consequence. He's even throwing in some "love" with it too.

 

For example, after yelling pretty loudly on the boardwalk that he wanted to keep playing his games in the arcade and I gave him the warning that he needed to stop, he continued to yell one more time and then spit his tongue at me. He was put in time out on the boardwalk and when we got back to the car, he asked very nicely if he could play his Jake game (Jake and the Neverland pirates on the ipad). I told him no and why and he said to me "but Mommy, I'm sorry for screaming. I love you so much."

The video below was my attempt at repeating the conversation. In all honesty, it's really hard not to laugh sometimes.

#4 and #6

A few of my Facebook friends from the disability community shared this article from The Mighty called 7 Things I Wish My Friends Knew About Raising a Child With Special Needs and reading it struck a chord with me because of how I've been feeling about some things lately. I shared a lot over Down Syndrome Awareness Month about all of the great things that have been going on with Colin, but I would be remiss if I didn't also talk about the things that I personally have a hard time with. You know, sometimes I just truck on through life and deal with things as they come, but there are also times (like recently) where things are just a little more challenging than normal.

 

In the article, the item that stood out the most was #6 I worry all of the time. This couldn't ring more true than it does for me. I worry about everything when it comes to Colin and not in the same way that I do for my other children. The main things that I worry about lately are:

 

- Inclusion: Colin is only 6 years old, but his education thus far has been a very challenging road. It was clear how our year last year went based on some of my old blog posts and while it is significantly better this year, there is never an end to the worry about many things. We are currently in the middle of following the terms of our settlement which includes some independent evaluations. These will ultimately lead to the addition of some supports that will be very beneficial to Colin and his education. However, it also includes some very detailed information about Colin and sometimes, it's just a bit hard to get through.

 

 

Chris and I feel very strongly about an inclusive education for Colin but it is a road that will never be easy. It is a journey that feels very much like always swimming against the current. I do feel like we are getting somewhere now and I am thankful for the people who are currently working with him but the worry never stops.

 

 

- Everything else: This is pretty general but that's what my worry is like with Colin. I worry about him having the tonsils and adenoids out and how that's going to impact school. I worry about what his blood work results are going to show; does he have anemia again? (he's got some signs that have been creeping up of that). I worry why he might have an off day or about little behaviors we see. I have to think ahead and anticipate his moves when we are out and about in public. I worry about what variables he might have a hard time with depending on where we are. Did he have a good day? What did he mean when he said that? Will he follow the directions at Sunday School? Why doesn't he want to participate in Karate today?

 

 

The second thing that really stood out to me in the article was #4 I am jealous of how normal your life is. Don't get me wrong, I love my life and I love the Mom that I am because of the uniqueness of each of my children. It was discussed in the article that everyone has their own struggles and this much is very true. However, I am, at times, "envious of the simplicity". I would love to go to someone else's house and just be there; not feel like I have to constantly have an eye on Colin. I would love to sit and watch an activity of Colin's and not have to coax him into returning after a break. I would love to not have to plan ahead or talk it through with Colin.

And such is life....so we just keep moving along!

Eye Doctor Checkup

We've been seeing an eye doctor for Colin since he was only a few weeks old to monitor the health of his eye. It is common for children with Down Syndrome to have an assortment of health issues related to the eye and their vision, so it is something we have been following yearly at the most. We have always noticed that Colin's eyes are not always on the same "track" (sometimes one eye appears to be looking in a slightly different direction than the other). Colin's private occupational therapist referred us to a different doctor than the one we were seeing to check on the progress of the development of the eye (looking at eye muscles, tracking, focusing, etc.). We saw the doctor at the very end of the summer and he gave us as prescription for the glasses. Much like many other areas of his body, Colin's muscles in his eyes are weaker than others. 

 

It has been a struggle getting Colin to keep the glasses on consistently, especially at school. The doctor found at his follow up visit today that he is making progress (the eyes look better than at the initial visit) so we just need to keep trucking along. I suppose the times he is wearing them is better than not at all but it is very frustrating knowing that it is something that is needed for him and will help further develop the muscles in his eye. This guy always likes to make things challenging!

Any suggestions on keeping the glasses on are welcome!

31 for 21 Day 31: Halloween

One of the biggest challenges we face with Colin is his difficulty in handling things that are not what he is expecting or part of a normal routine. We talk a lot about upcoming events within a time frame that makes sense to him to prepare him for whatever activity or event is coming up. For the most part, he can handle an activity not part of a regular routine that is with friends or family as long as there isn't anything that is particularly frightening or uncomfortable for him (pets, loud/unexpected noises, etc.). However, if it becomes loud, hot, and/or overstimulating, then he has a really hard time. For example, we were at a Halloween party at his Karate school on Friday and he had a really hard time because there were a lot of people in a somewhat small space, it was hot, and loud. 

 

 

While he loves dressing up for Halloween, trick or treating is not necessarily something he enjoys doing. There are so many variables that make it very challenging for him. 

 

We had a bit of a rough start trick or treating and it took us quite a bit to go two blocks up, but by the end, Colin could follow Kailey's lead and go up to a few houses (that was after skipping a bunch).

Overall, it was a little challenging but an enjoyable day nonetheless.