Thursday, June 25, 2015


Chris and I just spent the past 2 days at the New Jersey Coalition for Inclusive Education's annual inclusion conference and I was left with the push I needed to keep going in supporting Colin in his education. This educational conference is designed for administrators, educators (both general education and special education), CST members, and parents. The conference included two nationally known speakers for inclusive education and they were so good that I sat through ever single talk the gave over the past two days (they each gave 3).

The first presenter was Dr. Julie Causton and the second was Dr. Patrick Schwarz and they were both so inspiring, engaging, and informative. I urge you to check out their websites (both are linked in their names) because they contain so much great information about inclusive education. In addition, Chris and I had the opportunity to hear two keynote speakers, both self-advocates (one with Down Syndrome and the other with Autism), who have such great success stories on transitioning from inclusive education to inclusion in their communities as adults. Their stories really resonated with me because they are living the same dreams we have for Colin in his future; an adult who is a valued, independent, contributing member of his community.

I listened to administrators and educators share experiences about their inclusive schools; places where no segregation exists and all students are educated together. We shared our story with some of those administrators, educators and parents whose children are now older and we got the same response every time; keep fighting because it IS worth it, Colin IS capable and the benefits far outweigh any "negative" that is thrown at us. Most were so baffled that Colin's education was handled the way it was this year because it is just so wrong.

I could sit here and go on and on about all of the things I learned but instead, I'm going to list the top
10 things that I was either reminded of or learned at this conference.

1. There is SUBSTANTIAL evidence over DECADES that supports educating students inclusively but yet school systems are STILL separating students based on disability. This includes scientific research that actually demonstrates that those that are segregated perform less well than their peers and staggering statistics that show that these segregated settings actually negatively impact how these students will do as adults (acquisition of jobs, independent living, etc.).

2. We are showing students in schools that it's ok to separate and segregate people with disabilities. They often have separate busing, separate classrooms, separate tables in the classrooms/lunchrooms, separate places they go, etc.  Life doesn't have "self contained" shopping stores, jobs, living so why is it ok to be educated that way?

3. You should always start with what a student is ABLE to do and build from there.

4. Disability should be seen as an attribute, not something that needs to be fixed or "normalized".

5. Education for ALL students should be connected to their interests; it is amazing what students can accomplish when the content is made meaningful for them.

6. Every single person has a RIGHT to belong.

7.  Students with disabilities like Colin often have difficulty with transitions, yet they are ones with the MOST transitions.

8.  Behavior is a sign of communication; you should ALWAYS figure out what a student is trying to communicate when they are exhibiting certain behaviors.

9.  Inclusion is a philosophy that values the diversity within a community and provides all children with an authentic sense of belonging.

10. As an educator, you should examine your attitude by practice saying things like "how CAN this work?" and "how CAN this child be successful?".

Tuesday, June 23, 2015

Father's Day 2015

"A truly rich man is one whose children run into his arms when his hands are empty." - author unknown
I do not ever doubt that my children love me, however, there is something different about my kids and their daddy. Whenever they see Chris when he's been away from them, even if it's only for a short time, their eyes light up and they scream "Daddy!" and run to him...always. Even Cody who is not yet talking, lights up and starts moving like crazy when he sees Chris with his noise that sounds like he's gasping for air. It is true, genuine, love. 
This father's day, we started out with breakfast at home, church, and then played in the backyard for a few hours. Despite having his own little setup, Cody just wanted to do what everyone else was doing, and kept making a break for the "big" pool. 

(Don't you love Kailey's "floaty" in the picture know, in that big gigantic pool we have in the backyard?)

When Cody started to get a little fussy, Chris rocked and sang to him and he fell right asleep in his arms.

After dinner, we surprised the kids with a trip to the boardwalk for a few games and some rides. We figured it was going to be a perfect day for it even though it was Sunday because it hadn't been the best weather all weekend so the crowds were lighter.

We are pretty lucky because the kids have learned that we always set limits on how many games and rides they can do and don't ever lose their cool when they are done with either. Occasionally they can get "one more" out of us, but don't push us when we say they're done. It's nice having the boardwalk so close by and it's a nice treat every once in awhile.

That night was fun because Colin and Kailey LOVE air hockey and their games are actually pretty competitive. They've gotten pretty good so it's fun to watch the 2 of them play.

Cody is anxiously awaiting his time to play!

My favorite to watch, however, is skee ball. While they have greatly improved, sometimes they can't keep that incredibly hard ball on their track and it will fly off to another lane or hit (very loudly) the fencing that covers the scoring area.

After we were done playing games, we went over to the rides for a little bit. Colin LOVES roller coasters, so we let him go first with Chris while Kailey and I watched. She's such a great little cheerleader!

I have watched this video over and over again because I LOVE seeing Colin on this.  I actually can't wait to take him on some bigger rollercoasters in the future! I think he screams just because...he's definitely not afraid!


We tried to get our annual train ride picture, but we can't seem to get everyone in the shot...and looking at the same time!

Happy post-father's day to Chris, and to all of the other important men in our life....Granddad, Grandpa, Poppy, uncles, cousins, and friends....we love you!

Monday, June 22, 2015

Cody is 9 Months

Watching Cody today move all over the yard to try and do what the big kids were doing, I couldn't believe how quickly he changed and is not a little baby anymore! We have seen so many changes from 7 months until now and those changes continue to exponentially take place. 

He is turning out to be our most rambunctious one at this age, getting into EVERYTHING, especially now that he is mobile.  He only started crawling a few weeks ago; he literally just started one day. What was interesting to me is that he didn't have any other kind of in between crawl (ex: army crawl) like the other two had. 

Now that he's on the move, he's already pulling up to stand along everything and is even trying to stand up without holding onto anything. We have got to lower the mattress in his crib because he's standing up in there, especially when he's not happy.

He's pretty much done with baby food at this point. He can spot food from a distance and has tried anything visible to him. If he's in close range, you need to be careful of his grabby hands. So far, of all of the things he has tried, there hasn't been anything this kid doesn't like. He is a great eater and is now starting to be able to feed himself certain kinds of foods that are foods that can be picked up.

He loves playing peek-a-boo and when you ask him how big he is. He will sometimes try to initiate "hiding" by turning his face so that you ask him where he went and then gets this big smile on his face. When he is happy about something or someone makes him smile, he makes this funny  noise like he's sucking in air.  It almost sounds like he can't breathe, but it really just means he's super happy.

He's now had 2 ear infections since April that were not very obvious to us other than him being a little bit cranky. We think it's because he's teething and hopefully he will get a tooth through very soon!

We do consider him to be a very happy baby, however, he's been particularly difficult lately in that he's whining a lot of the time. We think it's because he's teething, but also because he wants to be doing what the other two are doing most of the time and I think he's just very frustrated because we either don't let him or he just can't. We thought this stage would die down a little once he became mobile, but now that he is, it's like it's not enough. Now we think he just needs to be walking so he can do more that he wants to do!

He's got very kissable cheeks is just our handsome little man.

We love him so much and can't wait to see all of the changes that are yet to come!

Friday, June 19, 2015

Reflections on a Long Year

Typically at this time of year, there is so much excitement for our family surrounding the last day of school for all of us. Summer is my most favorite time of the year and while I really enjoy my job, it is nice to have a break from teaching to be able to spend time with my own children. However, instead of excitement, this week has honestly left me in a little bit of a funk. 
1st Day of School - September 2014
Instead of happily anticipating summer, I am stressing over where we are going to find a very large sum of money to pay the attorney we have hired whose job it is to help us prove that Colin can be educated in a general education classroom at the hearing we have in August. Do you want to know what's so crappy about that? First of all, there is a law that supports Colin learning in a general education classroom. This law says that students with disabilities should be educated in the least restrictive environment to the fullest extent possible. The law also says that before a student can be pulled out of that least restrictive environment, various supports should be implemented to allow that student to be successful. This law is based on decades of research that fully supports an inclusive education for students like Colin because the research demonstrates the benefits that far outweigh a secluded setting. Yet we are still left in this position having to fight against a district who is actually taking us to a hearing instead of working with us to find ways for Colin to be successful. I see how it's easier sometimes to just do what the district wants you to do instead of what's right.

This is also crappy because we have now sat in countless meetings in which Colin's district adamantly refuses to support him in a general education setting. They have adamantly refused training for their staff, an inclusion specialist who would assist in appropriately modifying work for Colin and work with the staff on any challenges that arise and although the behaviors (as per the educational consultant we hired) are a result of how he was actually "included", they still won't bring in a behaviorist to develop a positive behavior plan.
Last day of school - June 2015
It's been a hard week for me as I look at all of the posts that have been going up regarding the completion of a school year for so many kids with the excitement of what grade their children are now entering. It's just so easy for so many people while Chris and I actually have no idea what grade Colin will be in, what school he will be attending, and whether or not he will be in a general education class. There have been so many wonderful posts about so many great accomplishments but yet many of the papers that have come home for Colin hardly show any progress (even though there most definitely has been progress). Colin's 4th marking period comments on his report card simply says "read everyday with your family!" and his "Farewell to Kindergarten" paper was colored blue with none of the boxes filled in with Colin's favorites and things he learned this year.  I am just so utterly disappointed in what this year has been like yet so proud of Colin for his resilience despite the fact no one believed he belonged where he was.

I know that I will be able to get myself out of this funk (I have 3 beautiful little kids that will help me do that) but it's so hard to not be emotional this week when so many of my reflections are based on an entire year of negativity and so much unknown ahead. I know we will get through...(just stinks). 

Monday, June 15, 2015

2015 Special Olympics New Jersey Summer Games

This past weekend was our 4th Special Olympics New Jersey Summer Games in which Colin competed and just like every other year, this one was filled with lots of inspiration. If you have never attended a Special Olympics event, I urge you to attend. You will never experience anything like it; athletes who compete giving all they have for the pure and genuine love of sport and competition.  

Unfortunately, Chris was unable to attend the opening ceremonies this year, but the kids and I made our way out there after school, attended the VIP reception, and then met our fellow Young Athletes for their introduction to the night.

The whole evening is amazing, but watching the law enforcement officials parade in just before the athletes with the bag pipes leading the way always give me chills (and tears!).

The Young Athletes, "future stars", are the first introduction to the parade of athletes and they make their way around the field giving lots of high fives and waves to the crowd and law enforcement officials. This year we actually had to cut out a little bit early because the heat really got to Colin (as well as the guns that went off to start the parade) and it being past his bedtime, but the experience was still amazing nonetheless. 


Saturday was Colin's day of competition. The Young Athlete Program was set up with a variety of sport stations in which the athletes rotated through with their designated group. Each athlete was paired with a buddy; we were lucky to again have our buddy Destinee as she is so good with Colin and Kailey! 

After a few hours of "competition" for the Young Athletes, they made their way to the track with their buddies for the Future Stars Race. This race is a 25m race on the track in which law enforcement officials are waiting for them at the end with a medal for their hard work and efforts.

This is probably Colin's absolute favorite part of the games. He took his competition very seriously, got himself set on the line, stretched, and got in position to start the race. The best part about watching compete is seeing Kailey cheer so proudly for her big brother. Athletes of all levels of skill compete and there is nothing like seeing the smiles of all of our Young Athletes as they give their best effort (which comes in all shapes and sizes) to participate in the event.

It truly was another amazing year and we are so lucky to be involved in such a great event. We are so grateful to all of the SONJ staff for their hard work in setting up and running this event as well as to all of the volunteers who give of their time and love to support athletes like Colin.


Thursday, June 11, 2015

Carrying The Flame of Hope

Last week, Chris and Colin had an amazing opportunity to participate in the Unified Relay Across America and play a role in passing the Flame of Hope as it makes its way to the Special Olympics World Games in Los Angeles. Colin, along with some of his other Young Athlete friends and families, participated in the torch run with Toys R Us, who is a Games Sponsor. 
It was such a special opportunity for them because the Flame of Hope symbolizes the Special Olympics goal of shining a light on the talents and abilities of people with intellectual disabilities. The flame is lit by the sun's rays at the Sacred Site of the Pnyx near the Temple of Olympius in Athens, Greece and then traveled to the United States in special canisters via airline. It was such an amazing opportunity for them to be a part of the ceremony as the Flame of Hope continues on its journey to the World Games in July.
While there, they met many people through Toys R Us and the Unified Relay. They even got to see Geoffrey the Giraffe and Colin was so brave and interacted with him. If you remember from last year in preparing for the National Games, Colin was very scared of Geoffrey! 


They were part of a ceremony and got to spend time with some of their friends! 


After they were done with the ceremony at Toys R Us, Chris and Colin got in the car and raced down to the Princeton/Lawrenceville area where they met up with Colin's Aunt Beth and friend Jen. Aunt Beth signed up to become a part of the Unified Relay Across America in a leg through that area by raising the money she needed to. It was such an awesome thing she did and we are so proud that her and Jen supported the Special Olympics to carry the Flame of Hope. Chris and Colin even got to join them as they carried the torch on their journey.



What made their leg even more special was that unbeknownst to all of them, they actually passed the Flame off to Colin's Coach Megan from the Special Olympics!

It was such a special day!