31 for 21: The Rest

There have been a few times along the way where Chris and I have been asked the question "what advice would you give a parent who has just received a diagnosis of Down Syndrome". For most parents, to receive a diagnosis that was unexpected whether it be during the pregnancy or when the child is born can be one of the most difficult things you could ever go through. I know that for us, the "scariest" thing was what the future would be like both for our family and for Colin.

The best piece of advice I can always offer is simply to love your child because the rest will come with time. Everyone has their own story, their own journey, on how things play out but I am most grateful that our diagnosis did not come until after I was already holding Colin in my arms. I fell in love immediately and that love superseded any of the grief and fear I was facing.

Chris and I have learned along the way a lot of things that we didn't know before and probably wouldn't know as well if it weren't for Colin. We certainly have learned how much we could truly persevere through something and we have been able to learn these things because of our love for Colin.

So I say love with all of your heart because you will figure everything else out as it comes. Colin is one piece of our family puzzle and just like the others, has a very meaningful and valuable place in it. We love him for who he is and for all of the uniqueness he brings to us.

31 for 21 Days 24 and 25: Great Grandparents

This weekend we had an opportunity to visit with my Grandparents while at my parents house. My Poppy is 93 and my Grandma is 92. I always love watching my kids interact with them when we visit.

Colin has always loved listening to Poppy sing his army songs from his time during WWII.

It's crazy to me that there is 92 years between Poppy and Cody!

I am so grateful to have this opportunity for me and my kids!

31 for 21 Days 20-23: Being Honest

Over the course of the past 7 years, Chris and I have been told many times in many different ways phrases like "God only gives you what you can handle", "Colin was given to you because you're special people", or most often "I don't know how you do it" (in reference to having 3 kids with one of them having special needs). I think I can speak on behalf of Chris that although we were not expecting all that Colin would bring with him, this life was our normal and we did everything possible to make it that way.

Over the course of the past 7 years of blogging, I have tried to portray our family as honestly and accurately as possible by including many pictures, stories, activities, events, and just everyday life. I feel as though I don't need a specific month to spread "awareness" of Down Syndrome because I have tried so hard to do that every time I open up the blog and write a post. Most of the time it's been in a very positive light to show what a good, happy, and fulfilling life Colin has but there also have been times when I've used this blog to "vent" or talk about some of the more challenging times. Although we are proud to say that life is very "normal" for us, the bottom line is that being a parent is hard; being a parent of a child with special needs is just a tad bit harder. When people say "I don't know how you do it", I often shrug my shoulders and say that everyone has "stuff" to deal with but I have to be honest and say that some days are extra hard for many different reasons.

Through all of the years of blogging, nothing has needed more venting or relieving of built up frustration, been more challenging, than this journey we have been on in educating Colin. There is an underlining daily stress simply by sending Colin to school anticipating what any day can bring (and that's not all on Colin).  

We have spent 7 years learning all that we can learn about Colin, Down Syndrome, and how we best see him educated and the learning doesn't stop. When there have been behaviors, we try to figure out what's causing them. Even when we feel they're never going to end, we keep pushing through and following on our plans. When he's struggled through eating/feeding and fine motor skills, we have spent hours at therapy. When the district doesn't want to work with us, we exhaust all possible financial resources to hire an attorney to fight for what is best. To determine "best", I have read many peer reviewed scientific research articles, scoured the internet for as much on inclusion as I could find, attended conferences, sat on the phone for "parent chats", watched talks and seminars online, hired educational consultants and tutors, enrolled him in extracurricular activities we thought would help, making tools to help him learn concepts, etc.. Nothing about Colin has been taken lightly, including placing him in a general education setting.

When a district member asked me in court on Monday why I have such "disrespect" for the teachers that have recommended Colin for a self contained placement I was so angry and offended/hurt (although I'm not sure those are really the right words) and I haven't been able to stop thinking about it. What she really wanted to know is why we haven't just accepted at any point the typical placement of self contained for kids with disabilities in our district, especially one like Down Syndrome. We have spent over 7 years now learning about Colin and Down Syndrome and how he learns best and that is never truly taken into consideration in this process. Even when we have been given "what we wanted" in terms of a general education placement, it has always felt like going up the steepest hill ever because there's always a "but" in there. "He's reading but, he's not reading on the same level as the other kids.", "Yes, he's doing great but it's his 2nd year of Kindergarten.", "He had a great start to the day but the afternoon was a little tough for him." Sending our child to school every day is like walking on egg shells because although HE is doing really well, there's always something to worry about. It's more about stockpiling the reasons why he can't be in a general education class than it is on celebrating his successes and finding more reasons to support him so that he can stay. If I was disrespectful of Colin's teachers, it would be evident in ways like talking unprofessionally to them, wanting him in a general education setting but not trying to help in any way or not doing every little thing possible we can at home to support Colin and his progress. However, none of that has happened. Asking me how I could be "disrespectful" of the teachers by now following their recommendation for placement is shameful as we have done nothing more than our very best to earn the right to be part of a team of people all working to do what's best for Colin. The district only focuses on his academics where we focus on academics, social, developmental, behavioral, etc.

 

So when asked "how we do it", the answer is not really clear. The best we can do is pick ourselves up, dust off, and keep going after days like we had last week in court. We're made to feel like we aren't doing what's right for Colin (and certain district people have told us we aren't doing what's right) yet I am proud to say that Chris and I continue to follow our hearts and the knowledge we have acquired in over 7 years now and are trying to persevere to give Colin the very education we can so that he can grow to be an independent, educated, and successful person when he grows up.

31 for 21 Days 17, 18, and 19: Court

I know, I'm cheating. I am lumping 3 days worth of posts into one but there is so much on my mind and I'm having a hard time organizing my thoughts into a semi-legible post. Those that have read this blog already know the journey we have been on in our attempts to include Colin in our public school system.

On Monday, Chris and I were in court for the 2nd time to start a hearing because we have been unable to come to a mutual decision on what the best placement should be for Colin up to that point. We were very close to agreeing to a settlement much like we did last year because a placement option that was proposed to us was something we felt would be of benefit to Colin (although we would have to concede a bit on what we felt overall was the best). When we came back together as a group, the district changed the proposal back to a self contained setting. In addition, my "respect for the staff" was questioned simply because we don't agree with the placement of self contained for Colin.

Next month we will be back to begin the hearing.

31 for 21 Day 16: Colin is a Dancer

After several weeks of standing at the doorway of Kailey's dance class last year, her instructor (pictured here) invited Colin to come in and dance with them one day and it just stuck. He enjoyed himself and wanted to continue dancing with the rest of the girls week after week. He was excited to finish the year up with the dance recital, especially considering how much he loves the stage and performing.

It was natural for us to sign them both up again this year and the class now includes both ballet and tap. During class one week, Chris caught the video below of them dancing and I think it speaks for itself how much Colin and Kailey are enjoying themselves.

We are so thankful for another community program that is welcoming and inclusive of Colin.

31 for 21 Day 15: Colin Attends Church

After years of not attending church other than holidays, Chris and my journey back started just before we were engaged. We were looking for a place that we would feel comfortable in and so one day, we decided to try the "one on the hill" which was close to Chris' apartment at the time. It was right around Christmas time and the church was beautifully decorated. I knew from that first visit that we had found the right place.

Through the years, we then got married there, baptized Chris and Colin, became members of the church and then baptized Kailey and Cody. We were happy with the family we had found and so we continued to involve our kids in other aspects of the church like the nursery, Sunday School and now that Colin is old enough, HillKidz (youth group).

We are so thankful that all members of our family are welcome and included despite some of our differences. People have taken the time to really get to know our family and have accepted all of us for who we are. Sadly, this isn't always the case in many churches. The Sunday School teachers have worked alongside Chris and I to form a place that Colin feels accepted and included and so he has been very successful in the process.

And so many Sundays, you will find this little guy in his pew singing along the best he can as a member of his church family. We are grateful for that...

31 for 21 Day 14: Kailey's Fashion Show

Kailey was invited a few months ago to participate in the American Girl Fashion show which has been a fundraiser for Special Olympics New Jersey for 12 years. Kailey was really excited at the prospect of modeling different clothes and so we decided to sign her up and have her participate.

With all of the talks of "walking the runway", Colin was adamant that he participate as well, so the organizers of the event gave him a job of being the greeter and passing out star wands to all of the kids as they arrived to the event.

She was a little nervous in the beginning of the process as she wasn't quite sure what it would involve, but once she had the opportunity to attend the fitting and try on many outfits, the idea really started to grow on her and she was really excited.

We could tell on her first trip down the runway that she was a little nervous/shy because even though she was smiling, her tongue was sticking out in the way it does when she's feeling that way.

However, with each outfit change, we could see her confidence building and by the end, she was strutting her stuff down the runway.

It was fun watching her doing something she enjoyed and knowing that it was also supporting Special Olympics New Jersey in the process.

What a fun morning!

31 for 21 Day 13: Colin Has a Baseball Card

Colin was one of the lucky few who was selected to be on a baseball card for the Special Olympics as part of a fundraiser with TD Bank (a huge sponsor of Special Olympics). We were excited as the card was part of a card pack with various other athletes from the east coast and spread among many TD Banks.

In conjunction with this, Colin and Kailey made TD Bank visits this summer to talk about their involvement in Special Olympics and it's impact on our family.

Because of one of our visits, we were invited to a BlueClaws game with one of the TD Bank branches we had visited and the kids were given the opportunity to throw out first pitches.

The kids were really excited to be so involved in a place they love so much and were loving the extra attention from Buster (which is usually someone Colin is fearful of!).

 It was such a fun experience for Colin to be on the card and to be invited to the game!