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!  

1,001

Today's post marks the milestone of 1,001 posts that I have written since I started this blog just over a month after Colin was born.  I only just discovered this number two posts ago on accident and it seemed like a little something for me to celebrate.  While I hadn't initially intended for this blog to become what it did, I have been so grateful for this outlet because it has chronicled the life of our family since Colin first came into it.  

 

 

Chris and I started out using this blog primarily as a way to share information about Colin as we navigated a new world of having a child with special needs but it very quickly turned into more than that.  After awhile, life was more than just about having a child with a disability; it was about family time and vacations, proud moments, challenges, smiles and laughter, events we participated in, and it was also about the daily things that can be difficult for anyone that has children.  We started sharing our life to show that it was defined by so much more than having a child with Down Syndrome.  Don't get me wrong, sharing the things related to the fact that Colin HAS Down Syndrome is incredibly beneficial as well because of a community of people I have found who can give advice, make suggestions, or sometimes just say "I get it". 

 

This journey that our family is on together is marked by lots of memorable events, but it's also filled with all of the little in between things that make every day something new, something great, and often times something really challenging.  I'm thankful to have this outlet so that I can share....because I do it for me, I do it to advocate for Colin, and I do it with hopes that maybe it can help someone else too, just like so many other blogs do for me.  Here's to 1,001 more posts about all of those moments that make our life together what it is...cheers!

Tiny Dancer

Earlier in the summer out of nowhere, Kailey started asking us to go to dance class.  She was even showing us some ballet dance moves and saying things like "this is how we do this, mom and you hold your leg like this".  We assumed she must have been picking it up on one of the shows she watches because she had otherwise not been exposed to any sort of dance class.  I had always had it in my head that I wanted her to at least try it at some point so I started looking around at local dance schools to sign her up.  

 

After finding a school that fit our schedule once I go back to work, I took her to sign her up and even had to purchase her a "uniform" that she would wear to class every week.  Words cannot begin to describe how excited she was to tell people that she was going to be starting dance class and every day she would ask me when she would get to go.  Well, the day finally arrived yesterday so we got her in her ballet "uniform" and I took her to class.  The teacher had the parents get involved to start since some of the girls were shy and timid but then eventually phased us out.  Kailey phased me out much more quickly than even the teacher phased us out (which I was thrilled about) and had a big beaming smile the ENTIRE time she participated.  It was absolutely adorable and the way she looked so happy and participated reiterated that this was a good decision for us to have her try it out.  Looking forward to seeing how much more she loves it each week!

 



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.