Tuesday, August 15, 2017

Eliminating Down Syndrome - a Scary Thought

My heart is feeling very heavy tonight as news is circulating this week in regards to prenatal testing, positive test results for Down Syndrome, and the percentage of expecting parents that are choosing to terminate their pregnancies. Iceland, Denmark and the United States are countries on the top of the list that are using this new technology (identifying genetic conditions at early stages of pregnancy) to make decisions about the lives of these babies. Most of the news pieces are focusing on Down Syndrome (one of the most common genetic conditions) and particularly in Iceland, a "vast majority of women --close to 100%-- who received a positive test for Down Syndrome terminated their pregnancy".

At the time I was pregnant with Colin, the only prenatal screening that would have given us a definitive answer in regards to whether or not he had Down Syndrome was either the Chronic Villi sampling or an Amniocentesis. Despite having a soft marker for Down Syndrome, we opted out of these invasive tests (which were not presented to us with any sort of bedside manner suitable for parents who were feeling scared and confused) because we knew that regardless of what the outcome was, we were going to raise this baby of ours. In the end, we never knew that he had Down Syndrome until he was born.

I can't say that Down Syndrome was ever part of our plan or even the life we expected for our child, but it has also shattered any sort of belief or expectation of what we thought a child should be like. While there have been many challenges and difficulties along the way, the number of life changing moments have far surpassed anything that has been "hard". Colin has changed our life in such a profound way that I actually hate to think about what I might be like as a parent, and especially as a person, if Down Syndrome wasn't a part of it.

I have not been able to shake this feeling of sadness I have after reading these articles but more, the comments that are being publicly posted on these articles by people who simply cannot accept anyone that is not like them. I am reading things like "they make life hard for those around them", "they are a burden", "they can't live a life like the rest of us", and many more that are just too painful to read. And then, I can't stop the tears from flowing because I look at my beautiful son and I simply CAN NOT imagine what life would be like had he never had an opportunity to live it.

The problem with this new technology is not that it exists. I took advantage of it when I was pregnant with Cody because Chris and I felt that at that time in our life, it would have allowed us an opportunity to be prepared for the baby's birth and what kinds of things it might need medically. What scared us the most when Colin was born was not the diagnosis itself, but some of the things that made him more medically fragile than other babies. The problem with the new technology is the lack of education the medical community provides to their patients when strongly urging them to consent to the prenatal testing. Many friends and family members that have opted out of the genetic testing have been met with heavy questioning by their doctors as to why they would choose not to consent. Even today when there are so many opportunities for people with Down Syndrome, people are still led to believe that terminating a pregnancy is the best option. It is one sided. People do not get to know "the other side" because it appears to be a "one size fits all" option for parents.

Less than 50 years ago, parents of children with Down Syndrome were urged to institutionalize their children because people could not imagine that their lives would amount to much. However, when more parents started to raise their children with Down Syndrome and provide them the same opportunities as a "typical" child, they realized how much they could flourish with LOVE. Today, people with Down Syndrome are being educated in the same classrooms as their peers, they are graduating high school, getting jobs, going to college, and doing so many amazing things.

More times than I can count, I have been told two common phrases, "I don't know how you do it" and "God only gives special people special children". If I was asked the question at any point prior to Colin's birth if I thought I could "do" this, I would have told you NO. I probably would have been the one to say to someone with a child with Down Syndrome "I don't know how you do it". But oh God, I would be missing so much love and wonderfulness if it wasn't for Colin.

When Charles Darwin went on his historical voyage in the 1800s to the Galapagos islands, he discovered that the diversity of living things was far greater than anyone had ever expected and that these living things changed over time. It was never intended for us to be the same in any way. Who decided that a life is not valuable? Who said that someone like Colin doesn't have a place in this world? Who said that your level of intelligence was the only defining characteristic in life? Who said that anyone is perfect? Whether it's God you believe in or just life itself, there is NO evidence anywhere that defines perfection. If you have stumbled across my blog because of the title (which is what I was hoping for when I used it) and are facing a diagnosis of Down Syndrome, I beg you to give your child a chance at life. You will be profoundly changed because your child will surprise you in ways you could never even begin to imagine. There is so much love! You can never anticipate what kind of challenges any. kind. of. child. will bring! There are so many scary things in life but Down Syndrome doesn't have to be one of them.

I am so thankful that God blessed Chris and I with this child with Down Syndrome. He is so much more than the plans I had for myself. He is love.

Monday, June 19, 2017

Last Day of School

Today marked the end of our 2017 school year and as always it left me feeling quite emotional, albeit for good reasons. I am so proud of all 3 of our kids for all of the growth they made from September until now and so thankful to some very dedicated people who played integral roles in all of their progress. I am proud of all of us for getting through this year day after day and feeling as though we've "come out on top" at the end.

Cody finished up another year at his daycare after having been moved upstairs with the "big kids". He's grown so much developmentally but is still 2 so we are in a very tough stage with him. While I was running this morning I was thinking how this will all be a blip on the radar one day (until we are on to new difficulties) but it can all feel pretty overwhelming most days when he is so fiercely independent and wanting to do the opposite of all of the directions he is given. However, I know we are doing something right during the moments of "clarity"; the moments where he uses his manners, follows directions, and it all seems to come together.

Kailey finished up her first year at our elementary school as a Kindergartener and academically did great. She has been a sponge and absorbed so much from her teacher this year which is evident from sentence starters like "Mom, did you know...?". She has been our informant this year and comes home with information about things that took place at school. She seems to know all that's going on around her which has been very helpful in many ways. She loved her teacher, her school, her friends and her experiences this year and we know that she has many great things ahead.

This has been a big year for Colin in 1st grade and we are so proud of all of the growth he has made. Last year was a great year for him for learning how to be a student and function in his environment but this year included a lot of academic growth. One of the biggest areas we see it is in his love for reading and how well he is currently reading. We know that things were not always easy for those working with him but we do know that they worked very hard day after day in ways that have allowed him to be so successful. He really does love school and the people he has spent his year with.

We are also so proud of Colin for becoming very independent and riding the regular bus this year!

I think at the end of the day what leaves me feeling the most emotional is knowing they are part of a community; one in which they love, are happy, have friends, people who look out for them, and teachers/staff that care for them as well. And so, I was emotional today for a good reason...knowing that my kids are cared for, have people that work hard for them in ways that allow them to be successful, and that all of OUR hard work is paying off as well. It's been a great year for all!

Wednesday, June 7, 2017

2017 Dance Recital

This past weekend was Colin and Kailey's dance recital and we were so proud of both of them! It was so much fun watching both of them up on stage together and dancing to one of our favorite songs (Can't Stop the Feeling). This was Kailey's third recital and Colin's second and it was a much talked about event in our house in the weeks leading up to it.

Kailey started dance several years ago when she was 3 and that year we were able to bring her alone without having to bring Colin with us. However, when we signed her the next year, the time was such that I was going to be the one who had to bring her (along with Colin and Cody). In the beginning it was a struggle trying to keep Colin out of the room and then eventually I got him to a point where he would just stand in the doorway and watch. He has always loved music and dancing and so it was a bit of a tease for him to be there but not be able to participate. One day in November, Kailey's teacher Mr. Richard turned to Colin and asked him if he wanted to join the group. I was a little hesitant at first because I wasn't sure how well he would follow the directions and stay with the group at that time, but he pleasantly surprised me so much that Mr. Richard asked Colin to permanently join and he's loved it ever since.

I have always been so incredibly grateful for that moment; for Colin being welcomed into the dance class so that he could do something with his sister that he really enjoyed.

And so, dance has been one of our activities that we have been happy to have the two of them participate in and one that they both have enjoyed.

It was another fun recital watching these two perform with their friends on stage! And without further adieu, the videos! Both of the recital videos were taken from someone else who was focusing on their own children; I can't stop watching! 

Thursday, June 1, 2017

A Heart Full of Pride

Several weeks ago, Chris and I attended an IEP meeting for Colin that was considered his annual review despite the legal process we are currently in with the district. It was far different than the majority of the meetings we have attended when placement is going to be discussed. There were many team members there in addition to some extra attendees that played different roles in the meeting. We walked away that day with smiles that stretched from ear to ear.

In the time between when Colin was born and when he was a month old, Chris and I spent a lot of time visiting different doctors and have evaluations done for various therapies and other services. While I can't remember a time when we were told Colin wouldn't do something, we heard a lot of "it will be very difficult...it will take a long time....he might not be able to...not like other kids..." and it was very overwhelming for us. However, we were determined to do what we needed to do for Colin and so we took every recommendation to heart as something we should do as often as possible (sometimes to a fault). In the mix of our post-meeting feelings, this video popped up as a Facebook "memory" and it reminded me again of our (and Colin's) determination.

I will never forget that moment; Colin was just about a month old and hated tummy time. We were told it would take him a long time to be able to do something as simple as roll over and it was suggested we should put him on his tummy as often as possible (which he hated). And as a 4 week old "weak" little baby, he angrily pushed himself over onto his back and showed Chris and I what he could do.

Colin's entrance into this world scared us more than anything because all we could thing about was how we would "do" this. But thank God for Colin because he showed us the way and so we believed he could...roll over, crawl, walk, talk, run, read, play soccer, be in a regular academic class, have friends, be a typical little boy, etc. We have been as determined as he was that day he ended up on his back just so he didn't have to be on his tummy one minute longer. We have known that Colin is capable because we all work really hard to give him the tools to be successful.

We are so grateful for teachers and therapists that have worked very hard this year so that Colin could make the kind of progress they spoke about at our meeting. We were so proud of Colin as we listened to each essential team member talk about how far he has come this year. He is an active member of his 1st grade class and in many areas he has made such great improvement. One of my favorite things they spoke about was his improvement at "circle time" on the carpet. At the beginning of the year he was an observer in that he listened and paid attention but rarely participated without a lot of help. However, his general education teacher talked about how involved he is now in the discussions that take place during this time. He contributes. His DRA reading level is testing mid-1st grade level and he could have actually tested at the next level had his reading comprehension not held him back. They have been using a new program for math and literacy that we all agree has helped and so it will continue next year.

Another favorite discussion we had was over his independence which they try to give him as much as possible. He's ridden the regular school bus with his sister (although they don't sit together) all year and so he boards the bus, gets off the bus, and goes into the school/his classroom all by himself. His therapy room and classroom are at opposite ends of a long hallway and so they have it all worked out now so that he can walk himself from one room to the other. When he gets to the room he is headed he will turn and either give his teacher/paraprofessional or the therapist he has left two thumbs up. The best part is that they discussed how many kids will walk along the hallway touching different things, dawdling, etc. but he is a man on a mission and gets himself from one place to another without distraction.

Despite how elated and proud we have been with Colin and what this year has brought with it, I have still found that at one of the most positive meetings we have had to date, I have had a writer's block on getting this post written. His progress has been evident when you look at the big picture of academics and being a member of a general education first grade class, but also, in the little things we see along the way that most might miss. The above picture was at Kailey's Kindergarten show and they allowed the 1st graders to also come and watch since it took place during the school day. Colin walked in with a big smile for me, sat in his spot, waved a few times, and then when it was time to go back to his classroom, turned and gave me two thumbs up and left the room. Although it wouldn't have been appropriate at that time, I was actually kind of disappointed he didn't run over to give me a hug but also so proud!

Colin is growing up in front of our eyes and we are so proud of this little boy he is becoming. We truly believe it's because we haven't given up on our life goals we have for Colin which include being educated in a general education classroom. We believe he is being shaped by this inclusive education; by the teachers/therapists and fellow classmates he spends his days learning from. We are so proud to say that he will be a student in a general education 2nd grade classroom with additional supports that will continue to help him be successful. It has been a long journey to get to this meeting we just had but each step of the way is worth the outcomes we are seeing. We are determined to do what is necessary to give Colin exactly what he needs to continue to grow and mature into this independent little boy. So after this one, we could exhale a bit knowing that we have all made progress and will continue to push just as hard knowing we are doing the very best we can for Colin.

Thursday, April 20, 2017

Happy 8th Birthday Colin!

Happy 8th Birthday to our beautiful little boy Colin! I am always so thankful for Colin's birthday as it always reminds me of where we all were when he was first born and just how far we have all come today. I couldn't imagine my life without Colin as he is truly one of the best people I know. He continues to work so hard every day in becoming this grown up little person that he is today. We are so proud of Colin and all of his accomplishments no matter how big or small. Happy Birthday Colin! We love you with all of our hearts!

Monday, April 17, 2017

Making Memories Over Spring Break

We're wrapping up a fun and *mostly* relaxing spring break tonight and I am sad to see it end. We tried to keep busy this week and find some fun things to do and I think we were successful in doing so.

Our first day was a beautiful one so the kids and I spent the morning outside doing some yard work. We ripped out a pricker bush and planted a new hydrangea that I was very excited about.

We also started potty training Cody which went shockingly well over the week (more on that in another post)!

I also had a cleanup in "aisle 3" as one shelf in my china cabinet fell when Kailey ran by shattering most of our wedding items.

Later that day, Colin had an eye doctor appointment and we took a walk up to the beach after he was done. It was much chillier on the beach than it was 5 miles inland!

We were all so excited to get our feet in the sand and start talking about our summer adventures ahead.

On Tuesday, we took a ride up to the Turtle Back Zoo and met my mom. It was beautiful out and so it was super crowded (it was probably our quickest walk through yet!).

Wednesday we met our friends Lauren and Landon for a swim date at the local YMCA for open family swim. We were all splashing around in the pool!

Thursday wasn't necessarily fun but we did make great progress at the dentist. Colin did great for the first time ever and Cody also had his first checkup and did pretty well!

On Friday, we bought a lawnmower and then headed to the boardwalk for the first rides session of the season!

By this past weekend, it was back to soccer, we went to our first BlueClaws game of the season (I shockingly left my phone in the car and didn't get any pictures!) and then it was Easter! We had a very fulfilling spring break and I'm sad to see it end!