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.

October is National Down Syndrome Awareness Month!

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.   

 

Welcome to the World Cody Allan Tobin!

On Friday, September 12th, our family welcomed to the world our little boy Cody Allan Tobin who surprised us by being 11 days late (and I still needed to be induced!).  He now completes our family by making us a family of 5 and adds a little brother for Colin and Kailey.  

 

 

 

Cody gets his own unique birth experience that compared very little to Colin and Kailey's, but that's what makes this guy special in his own way.  I can honestly tell you that aside from the surprise of finding out Cody's sex being memorable, Colin and Kailey's reaction to meeting their new brother was one of the best moments of my life.  Kailey is completely smitten and was so in shock to see him here in person and while Colin was excited, his attention span just lasted much less than Kailey's.  

 

They have both been extremely loving towards Cody and giving him lots of hugs and kisses.  Colin can be heard saying "awwww, cute baby" a lot while Kailey just asks to hold him all of the time. 

The funny thing with Kailey though is that she initially had to be convinced when told she had a new brother before coming to the hospital (she has always insisted she was having a sister).  After being told his name several times, she still walked in and asked for "Joe" which seemed to stick the first day a little bit but has now started to disappear.  We have no idea where that name came from.   We thought Cody's nickname was going to be Joe for a little while there. 

We were able to bring Cody home yesterday and even after just one day and night of being home I can assure you this will be an adjustment (for Chris and I!).  It's a little bit different having a sleepless night when there are two others with schedules and bus and school and needs.  I know once we are all in a routine we will all adjust and it will feel "normal".  

 

 

One of my biggest concerns was having Colin and Kailey woken in the middle of the night but so far they seem to be sleeping through which is good.  For the most part, while they know he is here, it's "business as usual".  

 

 

 

 

...but I am starting to see very quickly I have a little Mommy on my hands! 

 

Looking forward to our new family of 5 growing and changing with our beautiful little addition.  Chris and I are certainly blessed with the three greatest gifts we have ever been given!