Sleep: Down Syndrome Awareness Month (10)

Colin has always been a child who needs a pretty rigid routine when it comes to sleep at night. For most of his life, he has always gotten up early (on average, 5:30am is his wake time), needs a specific amount of sleep (9ish hours) and so it has always been important for us to make sure he is in bed and asleep by 8:30pm every night (it used to be 7/7:30 before activities, homework, and reading). For a pretty long stretch years ago, we used to be able to do the nighttime routine and leave him while he was still awake to fall asleep by himself. However, this started to become more difficult around the time Cody was born and ever since, we have had some other variables that play a role.

It generally has always been pretty easy to get him to sleep, but now he depends on one of us to be with him while he falls asleep. In addition, because Cody is pretty loud at night and takes a long time to stop doing whatever it is he's doing that makes noise every night, Colin can not tolerate going to bed in his bed. He got so frustrated by Cody's antics that it became easier to allow him to fall asleep in our bed; we would then transfer him to his bed when we went to bed. In addition, for the past 6 months to a year, he typically gets up at least one time a night and it takes us allowing him into our bed or one of us walking him back to his bed (and laying with him) to get him back to sleep. We have always felt very strongly about the kids being in their own beds, but now that we depend on what little sleep we get, we have become lax on our rules for ourselves. We also have to weigh out the pros against the cons. We feel that for the time being, what we are doing is working enough and now is not the time to break him out of some of his habits/routines. We are just happy for the time being that he gets the sleep he needs by keeping rigid bedtime routines.

Cody's Birthday Party: Down Syndrome Awareness Month (6-9)

This weekend we celebrated Cody turning 3 with a baseball themed party at our house. Cody was really excited to have a day just for him and is still talking about it today. We love our little Cody-man!

Shrek the Musical - Down Syndrome Awareness Month (5)

This spring, my high school put on the production "Shrek the Musical" and like we usually try to do, we brought the kids to watch. Although Colin loves watching "shows" on stage, he can sometimes get nervous and start becoming repetitive with things he says/does. At that time, he would continuously tell me he needed to use the bathroom and so we would need to get up and leave several times. Once the show started and he became more comfortable, he started to really get in the show. By the end, he was dancing in the aisle along with the cast members.

The show "stuck" with him that day and so I purchased the soundtrack from when it was on Broadway. We then later realized the Broadway musical was on Netflix and so both the soundtrack and the show became daily tunes we listened to. Colin asked for it over and over again to the point that it became one of his favorite things to do. We heard from his teachers/para regularly last year that it was something he talked about daily last year and it has continued into this year as well. He likes to assign all of us a character/role that we will play however it MUST be the one we are assigned. If he asks you "who will you be?" and you don't answer who he thinks, he will make sure you know who he thinks you should play.

We recently started discussing Halloween and quite expectedly, Colin requested to be Shrek. It took me awhile to locate a costume that I would be happy with him wearing and low and behold, we found THE one that fit him perfectly.

Now that the costume has arrived, Colin is now prepared to BE in a Shrek the Musical Show. Maybe one day he will have that opportunity! For now, we will enjoy our regular shows here!

Down Syndrome Awareness Month - Love For Reading (4)

Ever since Colin was really little, reading books has always been a regular part of our day to day routine. We have always read to him before bed and as he got older, he would often bring us a book when he wanted to be read to. When Colin hit Kindergarten for the first time, learning sight words was a daily assignment we needed to practice. That first year, I found this to be a little challenging but overall, he learned about 50-60% of the Kindergarten word list. By the second year of Kindergarten, this number significantly increased and I found the task to be much easier for him to complete. There were subtle clues last year in 1st grade that started to emerge that showed his love for reading and we found that as he became more confident in reading these words, he wanted to read more and more. We started out with simple level books and then he started to read whatever he could get his hands on. In addition, the school purchased a new reading program for Colin about half way through the year called Edmark that benefitted students with Down Syndrome because it was a sight word based program (typically easier than decoding). As this program was incorporated into his day along with the phonetics program they were already using, we started to notice even more progress (and saw that his DRA level was increasing as well).

One of Colin's most favorite activities to do these days is read (and that makes this book worm Mom SO happy). We are so proud of him because he reads so confidently and the more he reads, the more his fluency increases as well. We were told by his teachers last year at the IEP meeting that his reading comprehension is what affects his DRA level but we are even noticing an improvement in his ability to answer these types of questions. In addition to reading books of his choice before bed, we have also been reading the Raz kids books on the iPad (these are leveled books on readinga-z.com that are first read to you, then the student reads, and then there are 5 follow up reading comprehension questions). I am even noticing progress in his ability to answer these questions independently. At a meeting we had this week with Colin's teachers, they told us that his only difficulty with transitions comes when he is reading a book; he doesn't want to transition if he enjoying the book he is reading (not a bad problem to have!). Reading has become a clear area of strength for him and we just love seeing/hearing him read every day!

The first video below is from this morning. When Colin wakes up every day he knows that he needs to get himself dressed (his clothes are already in the bathroom), brush his teeth, do his hair, take his medicine (reflux) and then he can have the iPad to watch the videos he enjoys watching on YouTube kids. However this morning, he carried his stack of books to the bathroom while he got ready and then carried the same stack to the living room so that he could read them instead. He did this for quite awhile before asking for the iPad.

The next series of videos are clips from homework tonight. Colin had to reread the story "Dogs" (informational text) that his class has been working on because he will have a test tomorrow. He knows he needs his glasses to read and will make sure he has them on now so he can see well enough to read. I know if you are watching, it may be difficult to understand what he is saying but when he reads slow and you are with him, it is far easier to understand his words. I also love how he uses his figure to read; even a simple task like this was something we had to model for him.

We are SO PROUD of Colin and his reading!

Down Syndrome Awareness Month - Colin (3)

Colin is 8 years old and is in 2nd grade. He attends our neighborhood school on the regular bus and in a typical class. He loves to read, sing and dance. He plays soccer, takes Karate two days a week, and loves basketball and baseball. He craves structure and routine and thrives best under the conditions in which he knows what to expect next. He enjoys watching all different kinds of videos on YouTube kids (Sesame Place parades/shows, Shred the Musical, sports videos, etc.). He's funny, happy, and loves to make others laugh.

My favorite thing about Colin is how sweet, sensitive and attentive to others' feelings he is. He gives the best hugs and is the most loving person I know.

Down Syndrome Awareness Month - Our Family (2)

When Colin was first born and we were still reeling from his diagnosis of Down Syndrome, one of the things we used to think about was the impact it was going to have on the family we had planned to have. What would it be like for us, his possible siblings, extended family, etc? I think THE hardest thing we were facing at the time was the unknown of what each day would bring, let alone, the future we were facing. We were grateful to have some very supportive friends and family who all showed us the power of love but there was no greater teacher on how to be a family than Colin himself.

The challenges we face here are the things that most families have difficulties with; growing schedules, parents who work full time, financial difficulties, etc. Of course there have been some added challenges but our family doesn't look much different than anyone else's. We are 5 people who all bring something different to the table and love each other very much.

Down Syndrome Awareness Month - 1

October 1st is here and that means it is the start of Down Syndrome Awareness month! It is a month dedicated to promoting acceptance and inclusion for those with Down Syndrome which for me, also means showing just how special our son Colin is. In the past, I have participated in the 31 for 21 challenge where I would blog for 31 days in representation of the 21st chromosome. I enjoy sharing so much about Colin's life and I want to do the same this October but my plan is to do as much as I can this month without stressing if I miss a day or two here and there. The thing is, now that we are 8 years into this journey, our life is pretty "normal" and that means that at times, there's really not THAT much to talk about when it comes to Down Syndrome (it actually makes me laugh to say that out loud now because that also shows MY growth in this journey). However, I DO want to share Colin with the world because now more than ever, I want to show just how valuable and meaningful his life is after just 8 short years. By the end of this month, I hope you get to know Colin a little more as I share with you his special life!