Sunday, May 31, 2015

"That Down Syndrome Child"

This weekend, we were invited to a birthday party for a little boy who was in Colin's daycare class last year and now is also in Colin's karate class.  This particular little boy has always been one of those kids who makes me feel hopeful for Colin because he has always been patient and kind with him. It was going to be held at a local park in town that had an adjoining playground. We were all looking forward to attending and spending time with his family. 

We are in a particularly tough phase with Colin right now because he seems to be stuck in the middle socially between WANTING to be a part of the group or playing with peers, but really lacking the skills to effectively carry through on a social interaction. While his communication has come a long way, he is still not able to consistently initiate a conversation or play interaction and follow through. It is easier for him to play by himself most of the time because peers either don't want to do what he is doing (once he gets something into his head, he's pretty set on what he wants to do) or he just isn't able to effectively ask them to play with him. Even when kids try to get him to play, he doesn't always follow through because it's a task he's not interested in or comfortable with. On the flip side, when he DOES try to initiate a conversation or interaction, he's not always understood so even in his attempt, he's not always able to get others to play with him. A few weeks ago when we were with friends of ours for the parade and parked at one of THEIR friend's houses, Colin tried to go up to the little boy of his friend and so I tried to help him initiate the conversation.  However, he didn't want me helping and he kept saying "I do by myself!". His phrases were so choppy that the other little boy (although very nice), didn't understand what he was saying.

On a daily basis, we are working with Colin to remind him that it is not acceptable to use his hands to communicate and that he must use his words. This is usually surrounding incidences with Kailey out of frustration because she is bossing him around, not giving him something he wants, is using something of his, etc. This typically occurs due to a few types of scenarios. For example, Kailey had a book that Colin had been using and wanted back. He kept saying "I want my book" to her but she flat out ignored him. I watched him say it again to her and she kept reading pretending that she didn't hear him despite the fact he was standing right next to her and so finally he just grabbed it out of her hands. It obviously was not an appropriate action (and I had to remind him how to ask appropriately, and her to actually listen), but the only way he could effectively get what he wanted in that moment. Another incident occurred yesterday; they were in the bathroom together and I walked out for a minute to get something.  Kailey was making obnoxious noises and Colin asked her to stop, a request she ignored and continued to get louder. He asked her to stop again and when she didn't, he hit her in the leg, an action she responded to by crying. It wasn't appropriate, but he DID try to use his words and again, she didn't listen.

In addition, there are other times Colin will initiate play using his hands because he THINKS it's what's right to get someone to play with him. For example, in times of "free" play where kids are just running around, Colin will often run up to them and push/hit. It is not out of attempt to be mean, but rather, because he is trying to initiate some sort of play with them like a game of tag or "come and get me!". If you watch kids play, this is actually a pretty typical action that kids do, however, with the typical child, it usually coincides with the appropriate words initiating what they are looking for. For example, on the playground at the party yesterday, there were times the kids were rough with each other but it was all out of fun. I watched Colin get pushed a few times out of fun or play with other kids saying "I got you" or "come and get me". I saw another child (not with the party) take the ball he was playing with and chuck it over the side of the play structure). Colin's same actions are not always followed up with words so he is often scolded for it (you'd be surprised how many times kids will tattle on him when he's had the same thing done to him). A little boy recently got a time out for pushing Colin so hard on the playground at daycare that he fell down. Colin later pushed him and every day that I pick Colin up since the incident the same boy runs over to tell me that Colin pushed him. A dad even stopped me at daycare one day to tell me he felt bad for Colin because I had yelled at Colin for hitting Kailey when the father watched Kailey hit him first; an action I never saw.

It takes a lot of work with Colin every day to help him appropriately socialize, even with his own sister. He just doesn't understand the social rules the same way other kids do, so we often have to practice scenarios, set up sentences for him, and remind him to use his words and not his hands every single day. It's frustrating for us as well because even when he DOES use his words, he is not effective in getting his point across. You can tell that HE has become very frustrated lately.

We ended up being at the birthday party for over 3 hours. For much of those 3 hours, the kids were all running around on the playground playing different activities. Chris and I followed them around through much of the party, especially because Colin likes to climb now and with the flip flops on, we were worried about him slipping and falling. I do not like them to be out of my sight, particularly Colin, because although he's not a true runner, he can get something in his head that he wants to do and just sets off to do it. In addition, I just feel like I need to control situations with Colin and help him with appropriate play. Kailey was playing with the group, but for most of the beginning, Colin was parallel playing or off by himself away from the other kids. After a long time, and a LOT of observing, Colin finally started to work his way into playing with the group. The birthday boy tried a lot to get Colin to play and participate and even with our urging or help, Colin never fully immersed himself into the group. However, he finally started to play with an older boy that came with his lacrosse stick, and then Kailey and the birthday boy and their friends, and so we slowly started to ease ourselves out of being right on top of him.  I was so happy that Colin was actually playing WITH the kids and that it was going so well, that I let my guard down of having one of us follow his every move. We had been taking turns or following them around together, and then we started watching from the outskirts (it was a fenced in playground), as were most of the parents.
Right near the end, we were standing at the side of the playground talking with another mom and I had just seen Colin and Kailey run through the middle of the play structure and then head towards the slide. An older man and his wife came storming over carrying the little girl (not with the party) who had been playing in the midst of Colin's game of lacrosse asking for the parents of that "down syndrome child". I actually couldn't speak for a second because I was still processing what he was asking. So he says again, "where are the parents of that Down Syndrome child?". I finally answered with, "well, he's my son". I immediately felt as though I were going to throw up.
He went on to tell me that Colin pushed his granddaughter and she fell down on the stairs. He demanded to know why I wasn't watching Colin more closely to which I responded with the fact he was in my line of sight. I asked them to explain exactly what happened and all they would say was that Colin pushed her. I apologized for the incident and for her falling but explained that Colin had difficulties effectively communicating so it was probably more than him just pushing her. He continued to tell me I should have been watching and stormed away. I went to find Colin and asked him what happened. He said "I pushed" and looked down at the ground. My emotions were in overdrive and so I said/rose my voice "why did you push?!" to which he responded with "she poked me". I took Colin to their car to apologize. Before we could get to where the Grandmother was putting her in her carseat, Colin said "I'm sorry" to the Grandfather and he just said to him "don't apologize to me!". He wouldn't even look at us so I finally said that I was sorry the incident happened but they needed to remember that Colin was a little boy and not the "down syndrome child" they were calling him. I couldn't even stand there for another minute. He clearly didn't want to listen to anything I had to say. Thinking back now, there are so many other things I would say and ask but I just had so many feelings running through me in that moment.

Another person came up to me and said that she wanted me to know it wasn't exactly as the man described and Colin didn't even really push her the way they said. However, in Colin's mind, a poke warranted a push, an action that is clearly not appropriate. This is where I feel so sad for Colin because while he knows right from wrong, he does not always handle things the way he is supposed to. I feel so sad and really haven't stopped crying much about it since it happened. I feel sad that these kinds of things don't come so easily to him and I feel sad that he doesn't always understand the same way other kids do. Most especially, I'm sad that I let my guard down and watched from further away instead of up close since it was going so well because then something like this happened. I feel Colin's frustration as my own.
He is a little boy who didn't handle a social interaction appropriately; but all they saw was "that down syndrome child". This a scenario that makes my heart hurt in many ways.

Tuesday, May 26, 2015

Moving Forward

I've been trying to write a post now for a few weeks, ever since we had the first part of due process at the Office of Administrative Law. It was started, halfway written, edited a bunch of times, but I just can't seem to finish it. Instead, I decided to start a whole new one.  I've been having a particularly difficult time with all of this because I am just so utterly disappointed in how this entire year has gone for Colin in school. I am most especially disappointed because our case is officially headed to a hearing (trial) in late August because the district is adamant that Colin cannot be educated in a general education setting but refuses to support him in the ways that would allow him to be successful. I have read and reread IDEA so many times, still continue to research inclusion and the many benefits, and yet here we are headed to a hearing. I know that Colin can be successful but he has to be given a real chance. It all starts with a belief that a child like Colin is capable.   

It was nice to have a little bit extra of a break this weekend with it being Memorial Day. We were invited to walk in a parade in our friend's hometown of Hillsborough with their new Gigi's Playhouse.  We were so proud to support all those who were marching with Down Syndrome. It was also so nice to spend some time with great friends later that day after the parade.

For our family, summer sort of begins with our first official beach day. This year had some new dynamics with Cody being just about mobile but it felt so nice to be in the sand again. There is something refreshing about time spent near the ocean and I am so grateful we have that opportunity every summer.

My parents started a tradition many years ago during our summers at the beach where on our first day, we (my siblings and I) would take a picture of the 4 of us facing forward on the beach and then again facing the water (with the picture taken from behind). I am looking forward to continuing that tradition with my own kids.

While I am having a tough time right now, I know God has a plan for Colin and our family. While I can't understand all of the parts to that plan right now, I have faith that there is a purpose to these trials Colin is facing. I truly hope we can all come to an agreement that will benefit Colin and his future success.
"Every child has a different learning style and pace. Each child is unique, not only capable of learning but also capable of succeeding." 

Thursday, May 14, 2015

Colin's Part in a Global Initiative

At the end of last week, we received a call asking if we would be interested in speaking at a meeting at the Special Olympics International Headquarters in Washington D.C. about Colin's involvement in the Young Athlete Program.  The meeting would involve numerous members of the Board of Directors, including Tim Shriver and Kim Samuel, former president of the Special Olympics of NJ Marc Edenzon, other Special Olympics staff members, and another family who would be speaking as well. We were so honored to be asked to share our story about Colin's involvement in the SONJ Young Athlete Program which allowed him to develop his skills and then subsequently participate in the community soccer program as well as Karate.  We jumped at the chance and drove down on Sunday night, stopping once to wake Colin up, for us to get some dinner, and Colin a treat.
We explained to Colin that we would be staying in a hotel and then attending a meeting where he would talk about the Special Olympics and see his old friend Mr. Marc. He was excited to have a packed suitcase and an adventure with both Mommy and Daddy.

It was a long ride down but there was so much excitement surrounding the trip, especially because we would all have the opportunity to speak to some very influential people in the Special Olympics unified sports movement. This movement is all about having sport bring together people of all ability levels in a fun way to break down barriers and stereotypes for those with disabilities.

We arrived at the hotel pretty late, but Colin was so excited and brought his suitcase all the way from the garage up to our room by himself (he was very adamant about doing this too). The suitcase became the thing Colin was obsessed with during the entire trip. When we left for the meeting the next day, we would walk a ways and then he'd stop and say "Wait! My suitcase! Let's get it from the hotel!". We'd have to assure him that his suitcase was safe.  At one point during the meeting when the other family was talking, Colin leaned over to me and whispered "Mom! My suitcase! We need to get it from the hotel!". I once again assured him that it was safe.

The next morning, we met Marc across the street for breakfast so we could be briefed a bit on the goal of the meeting and then walked around the corner to the Special Olympics International Headquarters with our buddy Logan and his mom Julie.

After arriving, we had the opportunity to tour one floor of the offices and meet some of the staff as we awaited the start of the meeting.

The focus of the meeting was on Kim Samuel and her significant contributions to the Special Olympics organization, particularly to their work in the unified and young athlete programs. These contributions have allowed the movement to work with and train many families in countries throughout the world to combat the stigma and isolation associated with people with disabilities. This movement is working to make these areas more unified. During the meeting, Chris and I spoke about our journey since Colin was born through not knowing about his diagnosis, our involvement in the Polar Bear Plunge, and then Colin's participation in the Young Athlete program.  We described how this program allowed Colin to build upon skills starting at the age of 2 which ultimately allowed him to be able to participate in the community sports programs that he is now participating in. We talked about how we feel about inclusion and they asked questions about our current battles educationally in including him. They found this particularly baffling considering the work and progress the movement has made across the world, particularly in African villages. Yet here we are in NJ facing significant struggles. We were so proud of Colin because he also talked about the sports he really enjoys.  He shook everyone's hands on the way in all the way around the table and was so well behaved during the meeting.  He sat with us at the table, listened intently and answered questions when asked. He did awesome! Julie and Logan also spoke about their journey during the meeting as well. 

It truly was an honor to play a part in such a global initiative and we must give Kim Samuel a big heartfelt thank you for HER role in this movement.  It truly was an amazing experience.

We are SO PROUD of this little man and the many successes he has already had in his short life. It's amazing that Colin can sit in a board room, extremely well behaved, speak to many influential adults in a large room yet "he can't be educated in a general education classroom". I must be missing something...

Due to limited time after the meeting was over, we went back to the room to get changed (and assure Colin his suitcase was still there), took a quick walk to the closest landmark which was the White House, snapped a few pictures (we couldn't get very close), and then grabbed lunch with Logan and Julie before getting back on the road to NJ.

Whatever it is that Colin chooses to do with his life, Chris and I will fully support him but we want him to know that anything is possible. We work so hard to make sure that Colin always knows that and will continue to do so no matter how many roadblocks we face.  We are so proud of the Special Olympics for their efforts for all of those with disabilities in working to change attitudes. This was an amazing opportunity for all of us and we are so thankful!

Friday, May 8, 2015

On Being a Mommy

When I think back to some of my biggest accomplishments growing up, the things that come to mind are mostly related to the grades I earned while in school and how hard I worked to get two different degrees that allowed me to work in two different fields.  There were some bigger defining moments like meeting Chris and marrying him, but prior to children, my life was just different.  

Now, after children, my life has become defined by my 3 most meaningful accomplishments who have made me the Mommy I am. I think when you become a Mom, you realize just how resilient you really are and what you can do when little lives are depending on you. I still look at pictures sometimes of the three kids and am amazed that I am the Mom of 3 children.

Each one of them has brought something so different to my life and caused me to grow in ways I never knew I could.

This mother's day, I am thankful for 3 little people who depend on me, who need me, and who make me feel like I am one of the most important people in the world. 

I am also thankful to my own Mom, and all of the other women in my life (Grandmas, mother in law, sister, sister in laws, pseudo moms, aunts, cousins, and friends), who have inspired me to be the kind of Mom I am today. 

My mom has always been there for me, for Chris, and now for Colin, Kailey and Cody. She has always gone above and beyond for all of us and loved us all unconditionally. There are so many other women in my life who have also been role models and been there to help me be the person that I am.

Garth Brooks: "Mom"

Little baby told God, hey I'm kind of scared.
Don't really know if I want to go down there.
From here it looks like a little blue ball
That's a great big place and I'm so small.

Why can't I just, stay here with you?
Did I make you mad, don't you want me too?
God said oh child, of course I do
But there's somebody special waiting for you

So hush now baby, don't you cry
'Cause there's someone down there waiting whose only goal in life
Is making sure you're always gonna be alright
A loving angel tender, tough and strong
It's almost time to go and meet your mom.

You'll never have a better friend
Or a warmer touch to tuck you in
She'll kiss your bruises, your bumps and scrapes
And anytime you hurt
Her heart's gonna break

So hush now baby, don't you cry
'Cause there's someone down there waiting whose only goal in life
Is making sure you're always gonna be alright
A loving angel tender, tough and strong
It's almost time to go and meet your mom.

And when she's talking to you make sure you listen close
'Cause she's gonna teach you everything you'll ever need to know
Like how to mind your manners, to love and laugh and dream
She'll put you on the path that bring you back to me


So, hush now little baby, don't you cry
'Cause there's someone down there waiting whose only goal in life
Is making sure you're always gonna be alright
A loving angel tender, tough and strong
Come on child it's time, to meet your mom

Happy Mother's Day to all of you Moms out there, and all of the people who are like Moms to special kids you know.  Don't forget that you are a special kind of superhero...


Tuesday, May 5, 2015

Advocating for a Bright and Successful Future

Prior to having Colin, Kailey, and Cody, Chris and I had discussions about the kinds of things we hoped for and the expectations we had for our kids' futures. Each time we got pregnant, we imagined what their lives would be like and how they would change ours. 
When Colin was born, it felt like his future wouldn't entail what we expected but we very quickly learned that wasn't the case.  We have raised and supported Colin in all of the ways we know how so that he knows he is capable to be and do whatever it is he wants in his life.

We have become Colin's biggest advocates when it comes to educating him in an inclusive classroom because we truly believe that when exposed to the same curriculum, learning alongside his peers, in the same way they are, he will be just as capable to be successful.  It is no secret that because of the differences between Colin and his peers developmentally, he needs more support to get to the same places his peers are headed. We are advocating because we have seen evidence over and over again that shows that when you believe someone is capable, very simply, they ARE.

This year has been a very trying year for us because of the limits that have been placed on educating Colin. Sadly, we are not alone in our struggles and are finding that despite the research that has been supporting inclusive education for decades, in addition to the LAWS that support educating students in the least restrictive environment, many families are faced with school districts that still segregate their students with disabilities and place limits on them.

It has taken me a week since reading the post "They Wash the Football Team's Uniforms" written by a friend at the blog Big Blueberry Eyes to share and post about the content of the post. Her post left me feeling so sad and discouraged that I was unsure how to adequately share my feelings on the issue. I urge you to read it because I don't think I can appropriately convey how I feel about this and she does an excellent job in it.
The gist of the post is that during an IEP meeting in preparation for her daughter's transition to middle school, they learned that the self contained classroom she would be spending most of her day in (more restrictive than her setting up until this point in her education) was formerly the home Ec room in the middle school.  Therefore, because of the functional kitchen, they sometimes learn how to cook (not part of the curriculum for the general education students). These students do not receive their own lockers like the rest of the students. And even worse, because of the washer and dryer in the classroom, "sometimes they wash the football team's uniforms. They learn how to measure and do laundry, and the football team gets clean uniforms and it's....great!".
I'll let you absorb that one for a moment.
Just like she did, I would like you to now imagine asking your typical child how they would feel if ONLY their class in the school was responsible for a task such as washing the uniforms of the football team. Imagine that ONLY their class needed to complete a chore that no one else in the school needed to do. And now I want you to imagine how your typical child would feel if ONLY their class did not receive a locker to decorate and store their supplies for the day like the rest of the school did. I am sure they wouldn't feel good about the fact they had to do chores other students did not need to do and did not receive things like a locker that the rest of the school got.
So why is it ok for students with disabilities?
Every day, limits are placed on people with disabilities. We are advocating for Colin because we BELIEVE in him.  Just because it may take someone longer to get to the end point, doesn't mean they CAN'T do it. Belief is a powerful thing...