31 for 21 Day 6: Behavior as Communication

On Friday we had a 30 day review meeting at Colin's school to discuss his progress that consisted of a lot of the staff that is working with him.  We also have been in regular communication with his teacher regarding his progress in school.  We are finding that there is a list of challenges that they are working through with him, with the most challenging being his behavior. 

 

In trying to problem solve some of these behaviors, I have been spending a lot of time researching behavior in inclusive classrooms and have come across some helpful information.  I recently came across a great website called Inspire Inclusion by Dr. Julie Causton who has some great information as well as webinars that have been helpful.  Through her site, I signed up for newsletters geared towards teachers and parents which have led me to other resources as well.  One of these newsletters led me to Brooks Publishing Company where I found another webinar called "Supporting Behavior in the Inclusive Class".   The main idea of the webinar was that behavior is communication and it really gets you to look at what may be causing these behaviors.  However, more importantly, it identifies strategies that can be used to try and prevent these behaviors from occurring. 

 

 

A handful of the behaviors that have been a challenge with Colin at school are related to his still progressing social skills.  This is an area of development that does not come easy for him and is something that we spend a lot of time working on.  Because Colin's speech and language is not as developed as his typical peers, he is not able to express wants and needs easily and sometimes appropriately.  For example, it has been reported a few times that Colin has pushed other students on the playground.  We have also been told that he enjoys chasing and being chased on the playground.  We have seen him socially try to initiate play with others by using his hands instead of his words so it is quite possible that Colin is trying to engage with his peers because he wants to play with them by pushing them.  Colin's attempts to initiate play with Kailey have significantly improved but he is also comfortable with her.  With time, and as he improves upon these skills, we hope to see it translate into the school setting. 

 

Colin also displays certain behaviors when it comes to doing more challenging work.  We know that since behavior is a means of communication, he is expressing himself by acting out in certain ways.  If the behaviors worsen, then he is escalating those behaviors to convey what he is thinking or feeling.  In order to find strategies to work on improving these behaviors, we have to get to the root of what is causing them and it also takes some creativity to work through them.  The behaviors are reported to us through a checklist based on the goals written in his IEP.  However, I started thinking that maybe Colin could have a role in reporting his behaviors to us himself.  I created this behavior chart today with the hopes his teachers at school can use it by putting a smiley face to represent how well that period went and then review it with him at the end of the day.  Just like we address whether or not he is the same clothes for potty training when he gets off the bus, we can take the sheet out and have him show us how many smiley faces he has.  He can be rewarded for his progress and we can reinforce the negatives. 

 

We are hoping that we can all work together to figure out what the cause of some of these behaviors are by collecting real data on when, how and with who they occur so that we can find strategies to both prevent them from occurring and to use to correct when they are occurring.  I am grateful for the immense I have gotten from some friends who are more experienced in this than I am...and hoping that we can help Colin to make progress so that he can be successful.

31 for 21 Day 5: Respect





Starting on Monday, Colin's school is going to be celebrating a "week of respect" and in honor of that, families were given a peace sign that they needed to decorate.  The goal of the project was to demonstrate what respect means to your family.  We talked about it with the kids and spent some time discussing about what it means to be a friend, to be kind to others, and to help out whenever they could. 

 

Today, Chris and the kids participated in races in support of the Paul Jackson Fund, which was created in honor of a family member of Aunt Maureen's.  The kids were really excited to cheer for Chris, Uncle Brian and Aunt Maureen and we made sure we were in a few spots in order to do so.  I would tell the kids when I saw them coming but they otherwise cheered and clapped all on their own.  



 

  
The thing was, I found the kids not just cheering for the people that they knew.  As many of the runners ran by, they clapped and cheered and said good job over and over again.  They didn't know who they were cheering for but were showing their support for everyone that was running.  They are 3 and 5 years old, but they have learned how to support others. 

 

The purpose for so many of us to raise awareness during the month of October is so that people see that Colin is just a person like the rest of us.  He has emotions and feelings, likes and dislikes, and he has lots of people who love him.  We raise awareness because we want people to see that there is nothing scary about Down Syndrome.  Teachers spend time talking about respect at school, even at such young ages because they are the ones that get it.  They often don't see the differences that adults do and they know what it's like to be a friend regardless.

 

Raising awareness and respect should also start at home.  Our kids should see it in the way we treat our spouses, the way we support our friends and family, the way we help others, how we speak to those around us, using words like "please" and "thank you", smiling at strangers, holding the door open for others, and how we are otherwise good people. 



 

The Special Olympics has started a movement for athletes to "play unified".  They are igniting a change to take place by saying that if we play unified, then we will begin to live unified.    When we live unified, we are supporting others and seeing past the differences. 

 

 

We just want you to see THIS little boy for who he really is.  He isn't defined by his disability or differences.  Respect.

31 for 21 Day 3: Support



While I was trying to find inspiration for a post today, I was sitting at my desk staring at a blank screen when I looked up and saw this picture hanging on the wall. 

This picture was taken at the Special Olympics of NJ summer games when Colin was running in his future stars race.  When Chris and I saw it for the first time (Thanks Cathy!), we couldn't believe how one picture could have summarized Colin and Kailey's relationship so well. 

When Kailey was born, Colin was just one month shy of turning 2.  When we brought her home, I was expecting to see this instant bond between the two of them form when in actuality, it was the complete opposite.  It took a long time for Colin to start to really acknowledge her existence but once he did, we watched the evolution of what is turning out to be a true friendship form.  It is no secret that in many ways, Kailey has caught up to Colin developmentally and surpassed him in areas like communication.  However, because of their friendship, his social skills in turn taking, communicating, initiating play, expressing feelings, etc. have significantly improved.  What is even better, the support they have for each other is one that could really be used as a model for a lot of adults.  Families are the first people to look past the differences and see us for who we really are. 

...families accept us despite the things that make us so unique from one another.  I hope Colin and Kailey's friendship and unconditional love for each other can serve as a model for others that we should all look past the things that make us so different.  Those things do not define us, but rather, make us into the people that we are. 

31 for 21 Day 2: Inclusion and Acceptance

Before Down Syndrome Awareness month started this year, I took some time to scroll back through some of my earliest posts.  What always hits me is the very first post I ever wrote:

 

"My goal in creating this blog is to write about my thoughts and feelings as my husband and I begin our journey with our new son Colin and his diagnosis of Down Syndrome.  To say that the news was not a shock would be a lie but as time has gone by, we have slowly begun to realize that this is our special mission in life.  Colin has already begun teaching us and so many people around us what a strong and determined little boy he is...and I couldn't be more proud." 

 



 

The post was written just one month after Colin was born and I can vividly remember sitting down at my computer, searching for an outlet to purge all of the things that I was feeling.  I went on in the next post to talk about our "story" and how the diagnosis was one we were not expecting.  We were extremely lucky because even though we felt incredibly emotional and devastated when the diagnosis was confirmed, we had family and friends who rallied behind us and supported us.  We were even luckier because we had this little boy who we loved so much.  We had had the opportunity to hold him in our arms and meet our baby first, before all of the information started to be given to us.  Despite whatever fears and anxieties we had, it was easy to love Colin and just be a family and that's what we started to share with everyone through the blog. As Colin was checking in with new doctors and therapists, we also started to share that as well and pretty soon, the blog just took off. 

 

 

When people are facing the beginning of their journey the way Chris and I once were, I hope that if they stumble upon our blog the first thing that they see is a little boy with the biggest smile in a family that loves him immensely.  If they keep reading and take the time to look around, I hope they see that we are actually a pretty normal family who does fun things but also has challenging days (especially now that we have grown to be a family of 5!) like a lot of families do.  If they start following our blog they will see that we do have days where Down Syndrome is a topic that is discussed and it might highlight some medical issues, behavior issues, or more recently, challenges in school.  

 

A few weeks ago, Colin got on the bus on his first day of Kindergarten all by himself after we had decided to place him in a typical Kindergarten setting.  There was much opposition by our school district to place him there because where we are, students with disabilities are commonly placed in special education classes.  Chris and I wholeheartedly chose this placement because over the past 5 years that we have spent raising Colin, we have treated him as we would any other child. 

After spending many months doing a lot of research on inclusion, Chris and I made an informed decision to put Colin in the classroom we thought he would thrive the most.  We knew when we made this decision that there would certainly be challenges to this, but we were willing to do what it took to make it work.  We made the decision that we did because the benefits to being among his typical peers in a typical setting far outweigh any of the cons. 

Chris and I believe that Colin should be a valued and contributing member of society and to do that, he must be one now.  We believe in Colin's place in this world, in his community, in his Kindergarten class, and most especially, in our family.  We will continue to fight for what we feel Colin deserves. He is after all, just a little boy who happens to have Down Syndrome.   

I will admit that while we are 100% confident in our decision for where we believe Colin belongs, it does not mean that we don't spend time worrying about the mounting challenges.  The anxieties that I feel today, and every day, often feel very heavy because there are lots of things to sort out.  Every night that I lay my little boy down I say a prayer that we will figure out this unchartered road so that he can be as successful as he is capable of being.  I worry that even though we see his potential, others will not see it and I worry about him being accepted for who he is.  Tomorrow we have a meeting to discuss his progress so far and to hopefully brainstorm as a team strategies that will allow him to do just that. 

"The woods would be very silent if no birds sang except those that sang best." 

- Henry Van Dyke 

31 for 21 Day 1: Hi, I'm Colin!



Years ago when I started blogging, there was a challenge among bloggers called "31 for 21" which represented posting every day for 31 days in honor of the fact that those with Down Syndrome have an extra 21st chromosome.  With October being National Down Syndrome Awareness Month, it was a great way to spread awareness and dispel myths about those living with Down Syndrome.  Although I didn't quite make it through the entire month that first year, I have followed through each year and it is something I really enjoy doing.  Every year, I have tried to include posts that are both informative about Down Syndrome and also ones that show that Colin is more like his typical peers than not. 

 



My goal this year is to continue to do that but more importantly, to promote acceptance for the differences that exist among everyone, most especially for those with disabilities.  Yes, Colin has Down Syndrome and yes that makes him different but it does not define the person that he is.  On our end, as Colin's parents, we have pushed for him to be fully included in a typical Kindergarten setting among his typical peers because we passionately believe that Colin should be a valued member of his community.  We believe in Colin and we believe in his potential. 

Throughout the month of October, we are looking forward to reintroducing you to Colin and to showing all of the ways he's just like any other 5 year old little boy. 

 

"Hi!, I'm Colin!"

MVI 6921 from Kelli Tobin on Vimeo.

IMG 6741 from Kelli Tobin on Vimeo.

IMG 6740 from Kelli Tobin on Vimeo.

Life with Colin, Kailey, and Cody

As of today, our new little boy Cody is 1 week old and I can honestly that while there have been some big adjustments at home, we have also slipped into a routine pretty smoothly (so far).  Colin and Kailey are enjoying their little brother and what's nice is that he hasn't seemed to have affected life for them too much (you never can tell what a new addition will do).  Cody is also proving to be a relatively easy going baby, so that has been a tremendous help in the adjustment for everyone. 

 

Colin:

 

Colin started developmental soccer with the Special Olympics last weekend.  We were originally going to try and do town soccer but the time of Colin's practice and games is the worst time of the day for Colin in terms of his tiredness.  We were afraid it would be a wash because he wouldn't be up to being physical at that time so we are giving developmental soccer a whirl.  In this program, you do not have to have special needs in order to participate, although most of the kids that have been participating do. 

 

 

We are still working on transitioning Colin to Kindergarten and there are aspects that I think are going really well. We have seen changes with Colin even in the short 2.5 weeks that he has been there with his communication, behavior at home, and following through with tasks.  We know that even the little things we see here that might not be as big for others means that he IS progressing and we see that as a positive. 

 



 

That's NOT to say, however, that the transition has been without challenges and for us, that is the more difficult part.  We do understand that it is impossible for a child like Colin to start school in a new setting, with new teachers and staff, for a full, solid day of Kindergarten without a need for time to get used to everything.  One of the big challenges, has been establishing a toileting routine at school.  Overall, he has actually done pretty well with staying dry at school and for that he has been rewarded at home each time he comes home in the same clothing.  There have been accidents but we have been working through the logistics and a toileting plan was established by the nurse and principal to assist Colin with this.  The plan is very thorough and we were really excited when we read through.  We hope to see even more progress with this. 

 

 

The other challenges we have seen are much more interconnected and have to do with Colin's difficulties with the academics and the behaviors that we see because of his difficulties.  It can be difficult to keep him on task at times and with activities that are more challenging, it is hard to get him to follow through.  There are also some difficulties with his behavior on the carpet during some of the routines.  Efforts are being made to make adjustments to help improve these areas and different modifications are being made. 

 

 

We are doing well with communicating about these issues so it's really a matter of problem solving to work through different challenges.  To say this wasn't upsetting would be a lie though as it can be hard to go through a list of the things that Colin is having a hard time with.  Even when you know there will be challenges and you brace for them and try to prepare for them, it can still feel overwhelming when you don't have the answers.  I am really grateful to social media and the internet though because there is so much out there.  After being updated most recently from school on how Colin was doing, I took to one of the groups I belong to that is a great resource on inclusion and asked for suggestions on how to tackle some of these challenges.  We have a 30 day review meeting coming up in 2 weeks so I'm hoping to be able to discuss more of these suggestions.  The thing is, I always knew that it was going to be hard for Colin because in all reality, he has to learn everything. Things that come very naturally to other kids don't for Colin and we have to work really hard to teach him many things that other kids just pick up on.  Things as simple as routines at school, what's appropriate and what's not, sitting at a table for a certain period of time, etc. are all things that he needs to be taught (just like the other kids) but for him it takes longer. 

 

When all is said and done, we know he will learn these things, it's just that we need to find the ways that work best for him in order to do that.  For us, things as simple as the series of pictures below show us the progress.  When he gets home from school, he happily tells us about his day in bits and pieces, and follows through with directions and tasked without complaining (here he was asked to put away his sneakers and he did so without a complaint.  Now it's just becoming part of his routine). 

 

Another example is initiating certain activities on his own or with Kailey when before they were a challenge (at home).  Below, he asked for paper to make a picture and then told me what he was making.  He was also asking me what he wanted me to make for him here.  He referenced one of his teachers to tell me that she had him making certain shapes at school and showed me how to make them (even if he couldn't, he tried).  

 

 

 

While Colin loves his little brother, his attention span for it is pretty limited.  He can often be seen giving "passerby" hugs and kisses and will occasionally ask to hold Cody, but you need to stay near because when he is done, he is ready to pass him off to us.  

 

 

Kailey:

 

Kailey is loving being a big sister right now and helping in any way to take care of Cody.  There is a sparkle in her eye when she looks at her little brother and is constantly hugging him, kissing him, and telling us how cute he is.  She asks to hold him all of the time and if I give her a little bit of space with it, I hear her talking quietly and lovingly to Cody.  She is also extremely supportive of Colin and when he recently had some successes with the potty, she told him over and over again how proud she was of him and gave him lots of hugs for it.  

 

She is always hovering near now and asking for Cody and loving on him.  She had only a slight difficulty going back to school after Cody arrived but we've been distracting her by sending new pictures of him with her and then she's ok.  She loves school though and talks about all of the things she does while she is there. 

 

 

 

 

 
Cody has been doing pretty well himself as he is sleeping for pretty long stretches at night (4-5 hours) and is generally pretty easy going.  We checked in with the pediatrician yesterday and he had already surpassed his birth weight so we were happy about that.  We also saw the ENT today because he was tongue tied (discovered by one of the nurses at the hospital) and we found out was the cause of the constant flow of spit up and projectile spit up after eating.  He snipped the tissue (the thin piece beneath your tongue; Cody's attached almost to the tip so it restricted movement) while we were there and it was amazing how much more mobility his tongue had.  The doctor said that would decrease the spit up because then he would get more closure on the bottle and less air in his belly. 

 

 

He's already learning how to live in a house with 2 very active siblings and is generally not phased when they are loud and he is sleeping. 

 

So,  life goes on here and we continue to move forward day by day.   

 

Communication

Chris and I have been really happy with Colin's first few days of school so far but I am trying to keep myself from becoming a crazy parent who writes a million notes and sending emails all of the time.  I know that he only just finished his third day of school but I am having a hard time without knowing more specific information from his day.  In all of the times that we met with the staff he will be working with, we stressed communication as being a key component for us so that we can reinforce everything at home.  We don't want to just reinforce the academic components, but also the social and behavioral aspects as well. 

 

The positives are that he is happy to go to school each day, he has been independent with getting on and off the bus (and according to him, putting on his seatbelt by himself), he's been happy when he comes home, he's been in the same clothes so the potty aspect must be going well, and I am already noticing a change in his communication in terms of telling us more.  These are all great positives and makes me feel confident about his day BUT there are other specifics that swirl around inside my head every day that I am struggling with because I don't know and am not getting an answer from Colin about.  For example, when I asked him today if he was a good listener I got a bunch of different things ranging from "yes" to something about it being "not nice" in connection to the playground, and telling me about rest time. 

 

I am a teacher myself so I understand that it can be challenging in a day to respond to parents immediately and I also understand that I am sure right now, I am not the only parent with questions.   A lot of parents are sending their kids to school for the first time and probably have a lot of the same anxieties that I do.  I am just having a hard time finding the balance between wanting to reach out too much but getting the information we need to help Colin since he is unable to fully communicate it himself. 

As part of Colin's IEP meeting, the staff had requested in June to do a 30 day meeting at the end of September/early October which we were completely open to anyway.  I know that will come on pretty quickly and am trying to be patient to give time because this is a transition for his teachers as well.  Inclusion is new to them in that school so I know they need time to figure things out as well. 

 



I know that I am having some anxieties because I want Colin to be successful and independent but know that he does need help.  I don't want to be a helicopter mom but don't want to pull back too far and then find out that something has been going on when it becomes difficult to correct.  I don't expect a narrative on every part of his day, but also need some assistance with any bit of positives and negatives to address at home. 

 



Sometimes in writing these blog posts it's a reminder to myself to address the things I already know but it also helps me purge some of my anxieties.  Plus, we all know I have a lot of extra time on my hands as I am 7 days late waiting for baby #3.  However, even though I know I need to be a little patient, I also know that I still need to be a proactive parent as well.  Hoping that as everyone gets into a routine we receive a little bit more feedback about his day.