Wednesday, June 25, 2014

Understanding Inclusion (Part 1 of 3)

I'm glad that it has now taken me a bit of time to write this post after a meeting last week because some of the anger has now worn off and I can talk about it a little bit more calmly.  It also helps that I am fresh off of a conference held today by the New Jersey Coalition for Inclusive Education that was geared mainly towards teachers but had a lot of components for parents like myself.  I am feeling more determined than ever and although I am wary about what challenges lie ahead, am still 100% confident that Chris and I have made the best possible decision for Colin in choosing an inclusive education. 

After our last IEP meeting, there were some hold-ups that I had discussed regarding the acquiring of a paraprofessional for the times of the day in Colin's classroom when a special education teacher would not be in there supporting the classroom teacher (which is all but 80 minutes of the day).  When we initially asked, we were looking for a ratio of 1:3 or even higher because Chris and I did not want someone who could ultimately be doing TOO much for Colin.  As I mentioned in one of the last blog posts on the topic, comments were made but in the end after speaking with the Director of Special Services, they were going to grant us what they dubbed a "program paraprofessional" who would be in the classroom for any of the students with IEPs (essentially the ratio that I had asked for).  A meeting was set up for the last week of school so that we could meet with some members of the home school that Colin would be attending to be able to put in writing exactly what times of the day the para would be in the classroom.  We were excited to be able to meet at the new school and had actually been looking forward to the discussion.  
The day of the meeting, Chris and I pulled into the parking lot just as Colin's current teacher and speech therapist (she ended up being "dismissed" from the meeting because I guess they only needed the teacher's input) were and we immediately became suspicious as to why they would be there when we were only supposed to be discussing the paraprofessional schedule for the day.  After introductions were made (the meeting included Colin's current teacher, the case manager we finished the year off with, Director of Special Services, principal of the new school, school psychologist, Kindergarten teacher, and what would be our new case manager) the meeting took a quick change from what we were expecting when the new case manager took over.  I will tell you that from that moment forward, Chris and I felt as though we were ambushed (I do realize that this is a harsh word to use but I will remind you that we only were told we were attending the meeting to discuss a program para) because the case manager immediately had a "tone" when she wanted to discuss their "concerns" about our decision to place Colin in a general education classroom.  In her words, "I just want to understand why you would make this decision".
To approach this issue, they asked Colin's current teacher to discuss his progress in the classroom and while there were some positives discussed, the subsequent questions centered around the challenges that she has faced with Colin this year.  I felt that she gave a really good overview of Colin's behavioral challenges this year (mostly due to transitions) and also discussed tactics she used to combat these challenges.  The new staff brought up concerns that focused on these behavioral challenges, potty training, and his current academic level.  Academically, they were concerned that a gen ed classroom would be overwhelming and frustrating for Colin so to further pursue this issue, they had the Kindergarten teacher discuss how "rigorous" and "demanding" the class is including the fact that it's a "really long day" for someone like Colin.  In fact, "what do you think the other kids will be thinking when Colin has a tantrum".  We immediately cleared up the fact that Colin doesn't have tantrums but rather difficulty with some transitions (thankfully Colin's current teacher backed us up on that one).  So I asked her if any of the other students in the classroom ever had any behavior issues through the year and they all said "No, actually, this has been a really great class this year".  Riiigghhhttttt, not one reprimand, time out, loss of privileges, etc.!?  As Chris has said, these students must have been "handpicked by God"!

By that point, my blood was boiling.  I was the most angry I had ever been in the process and couldn't believe the tone that the case manager had taken with us (it wasn't just what she said, it was how she said it).  I finally interjected and gave a spiel about all of the things I have openly discussed here on the blog as to why we chose this route and how we came to this decision.  I discussed the many benefits to inclusion, that his challenges were things we could work through together, our expectations for the future, the law, etc.  I truly believe after listening to them talk in that meeting that they have some perception of a little boy with down syndrome (particularly because behavioral challenges were discussed) and until they actually meet Colin and have them in their school, this perception will not change.  This is why WE need to show them who Colin really is. 
So why did we choose inclusion?  We chose inclusion because we have absolute proof that it works.  From day one, we have raised Colin to be surrounded by his typical peers in typical environments.  He has attended a typical day care setting where he has made friendships with children who don't see the perceptions that adults have created.  
Colin and one of his first friend's Lilly
I am not saying that these friends have not seen some differences with Colin but it hasn't changed anything.  They have not acted any differently.  They have played and loved and helped Colin just like they would any of their "typical" friends. 

Another one of Colin's first friends Tommy
Colin has ALWAYS learned best by observing first and these children have been models for appropriate behavior, speech, social interaction, and other skills that Colin has been working on.  

 If you ask any one of the numerous teachers that Colin has had since he was 6 months old, they will ALL tell that there have been challenges they have had to work through and guess what?  They have all worked through these challenges and have been integral parts in Colin becoming who he is.   We KNOW without a doubt that Colin will be successful in a Kindergarten class with his typical peers but it might take some time for all of us to work through some of the challenges that Colin faces.  After the meeting was over, I sent an email to the principal (she seemed to ask the most productive questions towards accepting this) and (hopefully) painted a better picture as to who Colin was than what was presented in the meeting with pictures and a video.  

If only kids could teach ADULTS a thing or two on inclusion!!  They are the ones that show it works.  They already show what compassionate, helpful, loving human beings they are...

Saturday, June 21, 2014

Another Special Thank You

Not only did yesterday mark the end of Colin's education at his pre-school setting with the teachers he has had for over two years, it also was the end of his year with Miss Teresa at the daycare that we had started in September.  While this daycare had come highly recommended by lots of people, Chris and I were still a bit wary to change from a place we had been a part of for years (which coincidentally just closed down yesterday) and because of a bad experience we had had last year at another location we had tried. 
However, we soon realized that Good Hands was a place that we could completely trust to care for our children and we even found some pretty special people who have been a part of our children's lives now for the past year.  While we are extremely grateful for ALL of Colin and Kailey's teachers that they have had there since September, we need to send a special thank you to Miss Teresa, Colin's teacher for the past year.  
For this past year, Miss Teresa has been openly communicating with us about Colin when different challenges arose and she was more than willing to work with him in areas that he may have needed the most.  She did exactly what we would have expected with him and that was what he needed the most; he needed someone to push him and remain consistent when it came to discipline but she was also incredibly loving which is something he always needs.  We were so grateful that Miss Teresa worked with us and Colin to ensure Colin had a successful year this year.
Unexpectedly, Miss Teresa just wrote us a letter the other day that left me feeling very emotional, in a happy way.  It was a letter I wish I could take to some of the members of Colin's new school (that's a whole new post in itself that has been brewing) to show that it might be a little intimidating to know you are going to be getting a student who doesn't quite "fit the mold" but as long as you are willing to work together with us, everything will be fine.  Miss Teresa proved just what a real teacher is; she's someone who might have to change how she does things because of a student's unique challenges but can still find success because of working to figure out what works best.  And for that, we are extremely grateful. 

Wednesday, June 18, 2014

A Heartfelt Thank You

"I would thank you from the bottom of my heart but for you my heart has no bottom."
This week will be Colin's last week as a preschooler and he will be headed off to Kindergarten next year.  Just over two years ago, we put our little 3 year old on a bus for the first time and sent him off to public school (well, we actually had to drive him there, but that's a different story!) and left him with new teachers in a new school.  On Friday, we will be saying goodbye to the teachers who have loved him and helped him grow into the little boy that he is today.  I have no words to truly express how grateful we are to those people, but I will try to say it the best that I can...
First day of school: April 20, 2012
Meeting Miss Liz for the first time
To Colin's teachers and support staff at the EEC,
It's hard to believe that it's time for us to say goodbye to all of you as it seems like just yesterday we were starting a new journey with Colin by putting him on a bus and sending him to public school.  Chris and I were excited for this new adventure Colin would be taking but also nervous about how he would do and handle the change.  However, from the first day  he was with you, we could clearly see how much you cared for him and made sure he felt like a very special and valuable part of your class and school.  Even more so, you made US feel incredibly comfortable and trusted you to know that he was in great hands while with you every day. 
Colin and his teacher for 2+ years, Miss Liz
We want you to know that we appreciate all of the time, effort and love you have put in to making sure Colin has gotten everything that he could out of his time with you in school.  We know that it hasn't always been easy as he has found different ways to challenge you, but we appreciate the open communication with us so that we could find ways to overcome those challenges. 
Colin's Speech therapist: Miss Shannon
We believe that Colin is ready to tackle this next hurdle in his life and know that we owe so much of that to you and all that you have done to get him ready for Kindergarten. 

Colin's Physical Therapist: Miss Sue
"A teacher affects eternity; he can never tell where his influence stops."
Colin's Occupational Therapist: Miss Sue
We will miss you all greatly and hope you know how much we thank you for all that you do.  Enjoy your much deserved time off this summer!  
Colin's paraprofessional: Miss Charlene

Colin's paraprofessional: Miss Denise
 "There's no one quite like a special teacher, and no teacher quite as special as you."

Colin's Gen Ed Teacher: Miss Nancey

Colin's School Nurse: Mrs. Bonk

Colin's Principal: Mrs. DiGrigoli
 With hearts full of love, Chris and Kelli (and Colin too!)

Tuesday, June 17, 2014

2014 Special Olympics USA Games Young Athlete Festival (Part 1)

The 2014 Special Olympics USA games kicked off in many areas around the state with various athletic events on Monday, but it was also the beginning of a very unique program called the Young Athlete Festival which is presented by Toys R Us (a founding partner of the games).  We signed Colin up to participate on Monday and Thursday and were very excited at what it would entail for BOTH Colin and Kailey. 

We know that a lot of time and hard work has been put into this Young Athlete Festival and were excited for the kids to take part in such a great event.  Let me just tell you, it's awesome!  There are so many great activities for the kids to participate in and what makes it even better are the countless volunteers who have and continue to give of their time to make sure the young athletes are having fun.  These days, any time we mention the Special Olympics, the kids are excited regardless of the activity.  It was a pretty warm day so it took Colin awhile to adjust to the heat but once he did, he rallied and really had fun with the different tents and activities. 

The event had various tents set up with a variety of themes and activities in addition to fields/courts set up for events like bike riding, soccer, and basketball.  One of the tents that was set up followed the theme of a funhouse with mirrors to start that lead into an area with an inflatable set up for bouncing.  
From there, the kids continued into the "car wash" which was an area set up with bubble wrap and a bubble machine that blew bubbles into the hallway.  
From there, the kids walked through the rest of the car wash (hanging pool noodles) to the exit.  

The next tent was set up as a rainforest with various bridges and balance beams to walk through followed by a dark area where the mission was to find the missing jewel.   Kailey spent a lot of time in this tent and enjoyed finding the jewel over and over and over again. 


The balance beam required some assistance and went through an area of dripping water which Kailey was happy to tackle, but Colin avoided. 

 The last of the 3 larger tents was the mountain region where there were again a variety of obstacles to attempt followed by a slide down the mountain into the snow.  We found that Colin was pretty hesitant at first to try some of the parts to the course but if he saw Kailey doing it, then he was much more willing to try. 


After the 3 large tents, there were a variety of smaller sport specific tents that the kids really enjoyed moving through.  Colin particularly enjoyed the throwing station and the soccer station, but tried all of the activities.



Strider Bikes also had an obstacle course set up which Kailey absolutely loved and completed more than once.  They had a variety of bikes and sizes for kids of various ages to use.   

Colin also played soccer for a short bit but I think gave up on that pretty quick because of how much hotter it was on the turf than in the rest of the areas. 

After a quick break inside, a bus full of very special guests, some members of the International Special Olympic Board of Directors arrived to tour the Young Athlete Festival and interact with some of the families that were there.  We had an idea ahead of time that it might happen but it was an even more awesome experience than I had anticipated.  The members toured the venue as the kids were participating and a lot of them really took the time to interact with the athletes themselves.  While we had the opportunity to meet a lot of great people, two that stood out the most to Chris and I were Bart Conner (Olympic Gold Medalist for gymnastics, married to Nadia Comaneci) and Tim Shriver (son of Eunice Kennedy Shriver). 

Bart Conner suggesting gymnastics for Colin as a way to really build gross motor skills.

Tim Shriver cheering on Kailey on the Strider Bike Course

SUPER excited to spend time talking with Tim Shriver.
Shortly after, it was time for the Future Stars race (they have a track set up in the parking lot!) and the Board of Directors were there at the finish line to hand out medals to the runners.  As always, Kailey was a great cheerleader for Colin (good thing we found the pom pom that I had accidentally left in the bathroom!).  This is the event that Colin REALLY loves and certainly gave it all he had!  Bart Conner was even there at the finish to give Colin his medal. 

We were so proud of Colin and his friends for running such a great race!  Colin even went right into Tim Shriver's arms for a congratulatory hug!

2014 USA games Future Stars Race from Kelli Tobin on Vimeo.


Afterwards, we had to head back inside to get our stuff and had the opportunity to spend some time chatting with the members of the Board of Directors.  This was a really great experience and you could tell they were genuinely interested in talking with Colin and us about how he was doing and our involvement in the Special Olympics.  Colin really hammed it up with them too and gave out plenty of smiles, high-fives, hand shakes and hugs. 


However, we were also extremely thankful to our special crew of people who make the Young Athlete program what it is on a regular basis.  We were able to give them a big thank you on our way out as well. 

Coach Greg

Colin's personal volunteer Katie
Miss Andrea, director of the Young Athlete Program
We also said goodbye to our friend Tori who we've gotten to spend a lot of fun times with lately!  
The Young Athlete Festival is truly a great experience and we are so excited that Colin and Kailey were both able to participate.  We are so grateful to the many HOURS of work that have gone into make it what it is from so many people.  Even more so, we are grateful for the opportunities Colin is receiving because of being a part of the Special Olympics!  More fun things to come this week!