31 for 21 Day 9: Love and Stereotypes





One of the things Chris and I had decided on early on with Colin was that we wanted to make sure we taught him appropriate social interactions with people, especially because of many of the stereotypes surrounding people with Down Syndrome. We felt it was important for Colin to be able to show his love to people in his life that he knew but we wanted to create boundaries for him with those that he didn't. We encouraged hugging when appropriate but also started teaching him handshakes, high fives, and pounds for people he was meeting for the first time. 

 

We are so proud of the respectful, well mannered little boy we have raised. We really feel he has a nice balance between being affectionate and using alternate methods of greetings like handshakes when appropriate. However, this little guy can give the best hugs and if asked, he has no problem dishing them out! 



 

31 for 21 Day 8: Way Back Wednesday (2009)

This picture was taken of Colin on his first day of school in September of 2009. We had finally selected a school that we felt would be a good fit for him but were also incredibly nervous to drop him off and then walk away. We had finally gotten a handle on everything between Colin's therapies and needs and then felt scared to entrust those "duties" to someone else. However, we have been lucky along the way to have found some pretty incredible people taking care of our little boy and realized pretty quickly what a village we have had...

 

31 for 21 Day 7: Inclusion = Acceptance

Sometime back around the when Colin had transitioned into Karate classes on a regular basis, there was a 9 year old boy and his brother who were also attending. We started to notice that the boy would go out of his way to make sure he gave Colin a high five when they were celebrating accomplishments during class. With time, he would also go up to Colin before leaving after class was over to tell him what a good job he did or just simply to say goodbye. I also noticed moments where the boy would also try to keep Colin on track in class, remind him what he should be doing, or to tell him to pay attention to the instructors. 

Since that time, their friendship has evolved. They were together at a big party the Karate school had, when the boy invited Colin to his birthday party (he specifically told his mom he wanted to invite Colin), and then recently at the perfect attendance party this past weekend. Each time, they seek each other out and play together without limitations or boundaries. As parents of a child who often struggles socially to initiate and follow through with play with his peers, this relationship has been beautiful to see. This friend has quietly been spreading a message of inclusion simply by befriending Colin and accepting him for who he is and despite the differences that may exist between the two of them. We can only hope that Colin will have more friends like this in his future.

We are so thankful to special people like this friend...for defining inclusion, acceptance, and respect.

31 for 21 Day 6: Smile

Just prior to the Special Olympics of NJ Summer Games, we were contacted and asked if we would be interested in participating in an interview with some producers from ESPN who were going to be putting together a piece to air for the World Games in July. Of course we jumped at the chance and were really excited to be a part of it. We are always proud to participate in anything related to the Special Olympics and share Colin with others.

 

It was such a great experience that was made even better because Colin was perfect through the whole time we were there. He was even interviewed himself and did everything that was asked of him.

We were not sure what (if anything) would get used from the interview and didn't even know when anything would air. It all ended up being a big surprise to us. It was so exciting because on the day of the opening ceremonies for the World Games, we started getting texts right after it started because a short clip of Colin appeared in the introductory video. Then, a few days later when the piece called "Smile" aired on Sportscenter, we started getting contacted from friends and family saying they saw Chris and Colin.

 

When we learned what Colin and Chris' footage was actually used in, we were so proud and honored to be a part of it and are thankful to the producers for putting together a piece with such a strong message. I shared the video with all of my students the first week of school (I always spend some time talking about the importance of respect and sharing about Colin and Down Syndrome) because I thought there was something everyone could walk away having learned. It was so interesting to me to watch the reactions of my students as they watched and then to hear responses about it after it was over.

The first week of October is always celebrated as a week of Respect, and many schools participle in activities to help promote the inclusion and acceptance of others as well as to promote anti-bullying. What better way to talk about Respect than to share this video!

 

Unfortunately, due to privacy settings, I am not able to embed the video here, but I urge you to follow THIS LINK to check it out on the site where it can be accessed. We are so proud of Colin for spreading such a strong message of respect and acceptance of others and their differences!

 

 

31 for 21 Day 5: The Congratulations Project

I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. - Psalm 139:14

 

The moments surrounding all of my kids' births are ones that I will never forget. I can recall details about being in labor for each and their unique entrances into this world. However, the moments involved in Colin's birth story are ones that I can recall differently and in vivid details that are not the same for Kailey and Cody.

 

For the most part, my pregnancy with Colin was quite normal and uneventful aside from a short blip when we were referred to a high risk doctor for a level II ultrasound because of a "bright spot on the baby's heart". After a lengthy visit with a doctor who had a bedside manner that was much to be desired, he explained it was a calcium deposit that was a soft marker for Down Syndrome. He slapped a paper on the desk and slid it across the way to us and basically said that the only way we could know for sure was if we had an amnio followed by "what is your decision?". We declined and followed up 6 weeks later; the deposit was gone and the doctor said "see, everything is fine! You're baby doesn't have Down Syndrome!".

 

The people that left home that day Colin was born were not the same people that arrived back 3 days later..;

 



Colin made his entrance into this world after scaring us half to death when his heart rate dropped for an extended period of time and the moment he was here I knew something was different. I knew that the doctors and nurses were acting funny and I knew because when he opened his eyes and looked at me for the first time, his eyes looked "different". Shortly after Colin's birth, his pediatrician told us they were testing him for Down Syndrome and everything changed.

Chris and I were frightened and emotional but had immediately fallen in love with Colin. Despite the emotions that were bubbling over inside of both of us, Chris and I just knew that he was ours and we were going to do whatever it took so that he knew we loved him (no matter how scared and hurt we felt). And so began this beautiful life together...

The other day, this video popped up in my news feed and it brought back so many feelings from those early days that I hadn't thought about or felt in so long. It is called The Congratulations Project and is "an initiative in which members of the PALS family write letters to new members of the Down Syndrome community. These letters are designed to inspire, encourage, welcome, and most importantly, congratulate parents and siblings of a child with Down Syndrome".

 

 

 

I know that looking back on those frightened parents who were in love with their baby, we would have loved to have received a letter like this one. What a wonderful project... #thecongratulationsproject







31 for 21 Day 4: Paul Prendergast Karate

Almost a year ago, when Colin was having a difficult time at school, Chris and I were feeling a little bit lost on what we could do to help improve the behaviors we hadn't seen before. We felt as though we were doing everything we could at school but were searching for something else outside of school that would help on our end. We had heard about Karate from the kids' daycare because once a month, the karate school would go in and do a lesson with the kids. We got the contact information for Paul Prendergast Karate and gave them a call for a trial lesson. They were aware that Colin had a disability from when I called, but they assured me that Colin was welcome to join them. 

 

 



 

After the trial lesson, Colin was immediately interested and so we set it up for him to begin taking lessons. Although lessons are typically done in a class, we all felt it would be best for Colin to begin in private lessons until he had learned some of the basics and the routines of Karate before entering into the class. In addition, private lessons were a bit shorter than the class, so that was another reason we thought it would be better. Our goal in having Colin participate in Karate was for him to learn and get into a routine with the activity and physical fitness part of it but also, take away lessons like discipline, respect, and confidence since Karate is integrated with those major components. After his private lessons, he would always take a few minutes to watch the class and eventually, he started expressing interest on his own in participating in class. He naturally progressed on his own into the class and demonstrated he was ready by talking about it and asking to join.

 

 

 



We have been so proud of Colin for all that he has learned in the past (almost) year and it has been fun watching him progress from class to class. However, what surpasses these feelings are the ones that have to do with the instructors and the level of patience and understanding they have in working with Colin. There are classes where Colin is perfect and other classes where he might need a little bit of extra help. By the end of the summer, Colin was making it an entire 45 minute class with very rarely so much as a hiccup, but when school started, we found that since he was so exhausted at the end of the day, he didn't want to participate. After a month, and a LOT of patience and work by the instructors, he is finally getting back into a routine again.

 

 



 

Despite the fact we all struggled this past month, not one person made us feel like it was time for Colin to go. In fact, we had many conversations about how we could continue to push through and what modifications could be done to make so that Colin COULD be successful and eventually, get back to the place he had been.

I am filled with gratitude when I think about Paul Prendergast Karate because they have welcomed Colin into their dojo (as well as other students with disabilities) and work hard to make sure that he is a valued and successful member of each class he attends. They treat Colin like he is any other student in there, but also recognize that there are times when HIS challenges make things a little bit more difficult for him and are flexible to help him in those moments.

When a student is included into their community, it means that community accepts them for their differences and recognize the individual they are. It means that they teach others that differences are ok (just by welcoming them and including them) and that although they sometimes might act different or need more assistance, it doesn't mean they don't have a place there with everyone.  

 

Colin is accepted, he is valued, he is included at Paul Prendergast Karate.

 

 

 

31 for 21 Day 3: Feeding Therapy and Inclusion

I had planned to continue on talking about inclusion today more formally, until I received a note from Colin's teacher about something exciting that happened at school yesterday. Then I decided to switch gears and go with the flow when I realized that it all has to do with inclusion anyway. 

 

Despite having some difficulties with drinking from a bottle as a newborn, Colin still progressed through early foods quite normally when it was time to start with baby food. We noticed, though, that he did not like some of the typical baby snacks that most kids ate like cheerios or puffs. We hit a halt when we started to introduce the stage 3 foods (which I am not even sure are even made anymore). We were able to get him to eat some types of table food like pastina and cottage cheese but we struggled to get him to move beyond those soft foods.

 

One of our speech therapists through Early Intervention referred us to a feeding clinic in North Jersey that we worked with for over a year but made very little progress with. We felt a lot of it had to do with the forceful approach that was utilized to get Colin to eat. We took a break from it for awhile and saw tiny bits of progress with time. He had more willingness to try different foods but we still were stuck with his eating cottage cheese and strawberries for three meals a day.

 



 

We finally started therapy again a clinic closer to our home with a therapist who has been FANTASTIC. Through the past 2 years, Colin has slowly tried different foods and has even added new foods to his rotation. He no longer eats cottage cheese 3 meals a day, but has added in some choices with dinner. We find that he is more likely to try new foods if he is curious about what we are eating when we eat at times that are not at the dinner table formally as a family. For example, the other night, he ate quite a bit of Chinese food that Chris and I were eating much later than the other 2. He is now eating (regularly) pasta with sauce, pizza, perdue chicken nuggets with strawberries, ice cream, yogurt, sandwich (regular white bread) with various lunch meats, and pancakes.  

Colin @ Feeding Therapy from Kelli Tobin on Vimeo.

Yesterday in Colin's notebook, there was a note that said:

"FYI: A lot of kids were buying today and he said he was too...we let him and he did great AND he ate the pizza and drank the milk (skim). The fruit was apples so he didn't want it but _ and _ said he did great!"

He wanted to do what the other kids were doing, and he did! It was so exciting for Chris and I to receive this type of note because of the years of difficulties we have had with Colin's eating. While we still have a long ways to go, this was HUGE! I guess now I actually have to start looking at the lunch menu instead of throwing it right in the garbage!