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.