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!".

Tuesday, October 17, 2017

A Challenge With Colin: Down Syndrome Awareness Month (16-17)

As Colin has matured through the years, especially through this past summer, we have noticed that when it comes to compliance, his behavior has significantly improved. If given a direction, especially when it requires him to transition from one task to another, he is much more likely to comply than in the past. For the most part, he is also pretty easy going and goes with the flow from day to day.

However, what we currently find the most challenging with him is when something "sets him off" whether it is because he is tired, not feeling great, hot/cold, or just not how HE wants "it" to go. The way he handles things can be difficult because he is very rigid and set in his ways.

Example #1 (see first picture) - When we were at the pumpkin farm the other day, he got overheated/tired and just became "done". When he was told what the plan was for the rest of the time there, he didn't like it and as you can see, just sat down. He also got a little whiney about what was taking place. While this is pretty typical of kids in general, he is rigid in that it's hard to get him away from what HE has in his head.

Example #2: Tonight he was asked to clean up at bedtime. He was asked several times. He just kept ignoring us because he was set on building a "Hulk" out of the Legos he was playing with. I knew that even if I told him he wasn't going to be able to read a book if he didn't clean up, he would still continue to do what he was doing so I sat down with him and very sternly told him to start cleaning up and was helping; he still ignored me. I raised my voice and then he started to get upset as he started angrily throwing the Legos into the bucket (in a way that actually made me giggle on the inside - it was such a "typical" kid thing to do). Here's my favorite part which speaks to his maturity; in the bathroom he apologized for not listening on his own without ever being prompted to do so. And then, the rest of the night went pretty smoothly.

So while he is difficult at times because of his rigidity, he is also growing up and changing in so many ways. Daily, I am amazed at how far he has come!

Sunday, October 15, 2017

A Visit to the Farm: Down Syndrome Awareness Month (12-15)

Today we visited the farm for some fun fall activities and pumpkin picking with Cody's buddy Landon! We had a lot of fun!

Wednesday, October 11, 2017

Homework: Down Syndrome Awareness Month (11)

As the years have passed from one grade to the next, the homework that Colin has had to complete has varied. For the first two years of Kindergarten, the homework mostly consisted of the practice of sight words as well as some kind of Math task. Usually, the Math task was a skill set that needed to be practiced. Last year in first grade, the nightly homework continued to include the memorization of sight words, practice in Math skills, and a decoding book to read however, by mid-year, homework also came in a variety of modalities. Colin's teachers would send home a lot fun activities for us to use to practice these skills that didn't necessarily require him to write. These activities worked really well for us each night especially because by the end of the day, Colin would be exhausted and homework would sometimes be challenging for us to complete.

Now that Colin is in second grade and he has continued to mature, I am finding that homework is going even better than it has in the past. This year also brought the addition of agenda books and as a teacher, this really excited me because I love that even at this young age it is teaching responsibility. Each night, we use the agenda book as a checklist and it helps him to see what he has accomplished and what he still has yet to complete. On average, it takes approximately 30-45 minutes to complete the homework depending on the tasks that need to be done. Colin's homework is generally the same as the rest of the class but some of the assignments are shortened.

His homework usually consists of the following:

- Spelling (each night is a different task) - rewrite list 2 times, use spelling words in 5 sentences, alphabetize list, and practice to prepare for spelling test
- Math - usually a few practice problems using his touch points for addition (Touch Math program) and a number line for subtraction
- Vocabulary words - practicing/studying
- Science - we've only had one science assignment with a 2-3 window to complete (STEM challenge: make an envelope into anything)
- Social Studies (new addition) - studying words, simple assignment

At bedtime, we usually read one book on Raz-kids and complete the 5 comprehension questions that go with it and another book of his choice.

Sometimes in order to complete homework, we need to role play as teacher/student (the roles often switch) and it always includes an incentive when done but the majority of the time, it is completed pretty seamlessly. There are a few times where he gets frustrated and/or is tired and not fully into doing it, but overall, he has been very cooperative and willing to complete the tasks presented to him.

I am so proud of him and how far he has come!

Spelling (5 sentences using spelling words) - He picks the spelling word and attempts a sentence, I "clean it up" and then we spell each word out on the white board. He then copies the sentence onto his paper.

His teachers have been sending home this alternative writing paper recommended by the OT; the yellow highlighted areas on the lines help him to recognize where he should be forming his letters.

Vocabulary word practice - he usually reads through the list one time and then I will "quiz" him.

Math worksheet - his teacher will highlight which problems we need to complete and/or information in a word problem that is most important for him to recognize. He uses touch points (Touch Math) that help him to have a visual for counting/adding.

Writing spelling words two times each.

Tuesday, October 10, 2017

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.

Monday, October 9, 2017

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!

Thursday, October 5, 2017

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!

Wednesday, October 4, 2017

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 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!

Tuesday, October 3, 2017

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.

Monday, October 2, 2017

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.

Sunday, October 1, 2017

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!