The Big Ones

While I cannot deny the many positive things that are happening these days with both kids, the challenges, AKA "big ones", often overshadow those things.  Each child has one bigger issue that we are dealing with right now and some days it feels like it's all consuming. 

 

 

For Colin, the big issue is behavior.  One of the biggest stereotypes for people with Down Syndrome is that they can be overly affectionate and like a lot of personal contact.  These days, Colin actually does not like this and people that try to be affectionate to him can actually cause some of his behaviors to emerge.  At school, we've often received notes that another student was too close and he would attempt to push them away (don't get me wrong, he has been known to initiate the contact a good amount of time as well).  These are never overly aggressive behaviors but we have been working on teaching him to use his words and say things like "no thank you" when other kids are trying to hug him or touch him when he does not want to.  Obviously it's not appropriate to use his hands to get someone to stop doing something he doesn't want.  We see his frustrations when he wants something to stop but doesn't exactly know how to ask to get it to stop.  For example, the other night at the dinner table, Kailey was banging her fork on the table and it was getting Colin really frustrated.  He was yelling at her and just saying "no" over and over again but she was continuing with the behavior.  His voice was getting louder and louder until I told him to say "please stop Kailey" and then she actually did.  I know that we need to just continue with the modifications and techniques that we've been using but it can be frustrating at times!

 

Kailey's big one is the potty training!  Ugh, she knows exactly what she is doing and absolutely refusing to use the potty for us.  She is continuously having accidents on purpose and is really resistant to being cooperative with the potty.  The downside is that with both Chris and I working full time, we are unable to devote the time that we need to to just get it done.  My plan is to try a bootcamp type activity over spring break to get her on the right track.  She is exhausting with this potty business! 

Sight Words

We have been working really hard with Colin on sight words and in the past two weeks he's up to 9.  Tonight I started putting the words to create sentences with what he knows and was SO EXCITED and SUPER PROUD of what he could do!  The best part is he is really motivated by how excited WE get and he wants to keep going. 

I didn't do the greatest job recording but hopefully you can hear it a little bit. 

Celebrating World Down Syndrome Day (3:21)

I've been thinking all week about what kind of post I wanted to do for World Down Syndrome Day, which is celebrated on March 21st in representation of the 3 copies of the 21st chromosome in those with Down Syndrome.  I was having trouble coming up with a direction until I actually uploaded these pictures with the intent to talk about some of our "daily battles" in having TWO toddlers, one of which has Down Syndrome.  

 

 

The more I thought about it, the more I realized that the message I wanted to send THIS March 21st was one of hope, determination, love, and inclusion in a community in which those living with disabilities are a VITAL part of the world in which they are growing up in.  Our "daily battles" show that our life is really quite normal. 

 

Yes, we DO have our challenges because of the fact that Colin has a disability but those challenges are the very same ones that we all work hard to overcome, with no one working harder than Colin himself.  While children born with Down Syndrome can often have various health problems because of that extra chromosome, we were fortunate to discover that Colin's medical history is actually quite good!  We have dabbled in some minor things here and there but overall, a lot of the challenges we have faced have been ones that we can handle with medications or interventions, including the feeding challenges we have been dealing with since Colin was born.  

 

However, Colin has been working hard for YEARS and we are slowly starting to see progress with the variety of foods in which Colin will eat.  For the longest time it was only cottage cheese with berries, yogurt, pudding and ice cream and we have now added in (depending on the day) string cheese, cut up strawberries, fruit snacks, pasta with sauce and just TODAY he ate chicken nuggets for lunch at school (he would only ever eat them for his feeding therapist)!  

 

 

Chris and I have been on the receiving end of many conversations in which fellow parents have made comments like "I don't how know you do it" in reference to raising a child with a disability and I have always had mixed feelings about it, particularly in how I wanted to respond.  When Colin was born, we were unsuspecting parents of the diagnosis with which Colin was bringing.  That was a scary time for Chris and I because we had no idea as to what the future would hold for all of us.  However, nothing could take away from the feelings we had immediately when holding our baby for the first time and that love continued to pour out of our hearts.  No matter how scared we were, we KNEW we were going to do whatever it took to make sure Colin was loved and had whatever he needed to  be the little boy we knew he could be.  Isn't that what all parents want for their children? 



 

Once Kailey joined our family (our typically developing child), I quickly realized that life will ALWAYS bring us challenges that we need to deal with regardless of the genetic makeup of those we love.  While we all can agree that sometimes there are challenges we face that are more significant than others, we all do what we can with what we have in the moments we are in.  Chris and I do what we do simply because we love Colin.  

 

Now that we are turning a developmental corner in our journey with Colin, we have realized more than ever how important it is to show through all of our actions that those with disabilities should be included in their society the same as everyone.  We are attempting to figure out the best plan for Colin's academic future and no matter which way we look at it, we always come back to the thought that while he may have challenges and "differences", he is still more alike than different and belongs with his typically developing peers.  

 

We raise BOTH of our children so that one day, they will be independent adults heading out into a world in which they have a job, work hard at what they do, have a family, a home, and a life in the community in which they choose to live.  Our job is to give them the skills so that they BOTH may be able to do this.  The only difference lies in the ways in which we present those skills to them because of the unique differences in their learning styles.  

 

Would you like to know what life is like in a family of 4 with two toddlers, one of which as Down Syndrome?  

 

It's really quite great!  We love to laugh and have fun....

 

We have days that are really challenging because no one wants to listen and there are timeouts and battles...

 

We work hard on what we need to but make sure we have fun doing it...



 

We LOVE with all that we have.  

 

When encountering those with disabilities, please remember that they are people just like you and I and they have feelings which can be hurt. It might be hard to have a conversation or communicate in the ways you are used to but I promise you that it's worth the effort to communicate in the universal ways that we all know how...a smile goes a really long way. 

 

While World Down Syndrome Day is a day to bring awareness to those with Down Syndrome, it's also a day to highlight the fact that WE ALL have differences and those differences should not define who we are or how we are viewed in society.  

 

Colin may have a disability but we view him just like we would any other little boy; we view him knowing he has the potential to be something pretty great in his life.  

 

...and that's the exact same way we look at Kailey.  

 

On this World Down Syndrome Day we ask that you see the potential in EVERYONE...

Kailey's Birthday Follow up

Last week we celebrated Kailey's 3rd birthday with a day of fun after work and school was over.  

 

 

Ever since Kailey was a newborn, she pretty consistently wakes up on the wrong side of the bed every day.  Seriously, she has never been a happy girl for the first 30 minutes of the morning so we are always pleasantly surprised when she comes walking out with something to say and is relatively cheery.  Just yesterday morning, she came walking out saying "Mommy, I have a lot of boogies in my hair" (she mistook the eczema in her scalp for boogies).  However, on her birthday, she wasn't quite ready for Chris' and my birthday singing ordeal and it took awhile for her to actually be happy about her birthday despite the fact she had been counting down.  

 

 

Chris dropped her off at her school with her hot pink cupcakes and she was happy to announce to everyone that it was her birthday and she would be having a cake.  From what we were told, she had a really great morning but woke up on the cranky side of the mat in the afternoon. 

 

 

 

Unfortunately, I had arrived to pick the kids up right when they were lined up in the hallway to play outside so both totally lost it when they saw me (now THAT is a great feeling!).  On top of that, I had stupidly scheduled Kailey's 3 year checkup for that afternoon so I was also in a rush to get there on time (seriously, what Mom schedules a doctor's visit ON their kid's birthday?!). 

 

 

 

Both of my kids are actually really good with doctor visits thanks to Doc McStuffins, and Kailey did great right up until the nurse came in to give a needed vaccine.  Thankfully, Colin is the one who needs regular blood drawn (he takes it like a champ) because Kailey was that child you hear screaming bloody murder and you wonder what's actually going on in that other room.  

 

However, we improved on the afternoon when we took her and the kids to the boardwalk to play games in the arcade with Mo, Tim, and Aunt Kimmy.  They had a great time roaming around from game to game (Kailey had no problems asking for more money) and especially had a great time playing air hockey.  Despite the fact the game is rather slow when they play, they are actually pretty decent at it and get the concept. 

 

 

 

Because our pizza/chicken finger joint was closed, we took the party back to our house for dinner, cake and presents. 

 

 

 

While it's tough celebrating birthdays on weeknights (especially when we push the kids past bedtime), we had a really good day celebrating Kailey turning 3.  She is such a sweet and loving little girl and we are so lucky she has blessed our lives with her presence.  Fun times!









 

Happy 3rd Birthday Kailey!!

Kailey is turning 3 today!!!  Happy birthday to a beautiful, loving, smart, sassy, full of energy, always snuggling, and most especially, dramatic little girl.  I should have known when we went to the hospital the day before with her because of contractions all night long, only to be sent home after 12 hours because she wasn't making a move that she was going to be LOTS of drama!  That drama though is what brings a lot of excitement to our lives and we wouldn't ask for her to be any different.  She amazes us every day with the things that she says and does and are constantly impressed with what she can do and is capable of. 

We look forward to all that is yet to come!  We love you Kailey!

)

More on the IEP Process

I've waited a few days until I have actually drafted this post to give myself a chance for my emotions to die down.  I wanted to write this as informatively as possibly without dragging the FULL load of how I was feeling after my day on Thursday was spent in Colin's IEP meeting, informally discussing placement, and then touring placement options.  

 

 

The IEP meeting itself went really well as we discussed Colin's progress over the course of the last year and also discussed test results.  As it has been since the day we first began the road of testing and placement years ago with Early Intervention, I have always hated hearing the results of Colin's tests but I am also in a place now where I sort of half listen to the numbers.  Colin's PT brought up a good point as it's all about what he can do functionally and not what a test tells us.  This is especially true when he wasn't always the most cooperative after having to do it over the course of several days.  We signed off on keeping the current IEP in place for the remainder of the school year and then a new one will be drafted in May for his placement into Kindergarten.

 

After the meeting was over, I was shown the self contained LLD (learning language delayed class) that is in the building that Colin is currently in now.  This is the same special education class I have mentioned in earlier posts that is segregated from the rest of the Kindergarten population by being housed in a different building than any typical Kindergartener.  I am currently working on this as I have written a letter, spoken up at a parent's forum and the next step is a Board of Education meeting.  During this tour, an informal discussion came up with the interim case manager and our new case manager (it was her 2nd day on the job in this building) about what my expectations were for next year and I said that it was inclusion.  The new case manager had a point to say about every single one of my (research backed) comments about inclusion (which got my back up because she doesn't even know me or my child yet).  Unfortunately, I am a really emotional person so despite my best efforts to remain strong (and continue to stand my ground), a few tears leaked out (I hate when weakness shows through that way!). 

 

Later in the day, I had an opportunity to look at the general education in class support Kindergarten class.  In this classroom option, a special education teacher comes in two times a day during literacy and math and there can be up to 8 students with an IEP with a total of about 22 students in the class.  While the higher class number can be a bit intimidating, I STILL think Colin can be successful with the right support.  I know our team has Colin's best interest at heart and I do value and respect their educational opinion.  However, I have felt very strongly about the benefits of inclusion since I first began my research and my gut tells me that it is the right thing for Colin.  I have listened to all of the points that have been made about why Colin should be in a self contained special education class and while I agree that there are challenges that could make this a good placement for him, I also believe that we will never know what he is capable of until we push him to try.  Like any child, starting Kindergarten may be overwhelming and frustrating but that is why we would put a plan in place (an individualized plan) to support him to allow him to succeed.  I feel like the worst thing that will happen is that we may need to back off a little bit a little bit down the road if that's the case but here's the thing; all Chris and I ever expect of Colin is to the best that HE can do.  This might not necessarily be what society thinks is the norm but this is what COLIN is capable of doing.  

 

This decision is not one that we are taking lightly, nor is it an easy one.  I challenge myself every day but I still come back to the same answer every time and that is the one that I feel is the best option for Colin.  This will be continued as the biggest part of the IEP journey is still ahead...