The Healing Powers of Fresh Air

Last weekend we saw the start of our first real stretch of warmer weather this spring and it felt fantastic.  It's amazing how good fresh air is for the soul and even as the weather has been changing, I have seen a nice change in my kids' overall demeanors lately.  We decided to take the kids to the beach even though it's always a bit cooler as you get closer to the ocean because the kids had some new sand toys and we figured the salty sea air would just add to the medicine we so desperately needed.  

 

 

The sun was actually warm enough to take our shoes and socks off and dip our feet into the sand for the very first time this year.  The one that started that trend was Colin himself!

 

 

I really don't want to "jinx" it too much by saying this, but we have seen a really nice shift lately in Colin's overall behavior and demeanor and we have been getting a lot of nice positive reports on it from both schools in how well he has been doing. That's not to say there haven't been some comments here and there (I think today's note mentioned that he was "tapping friend's faces but got it together" which I can actually picture how he likes to be silly with that sometimes).  He has been doing well with transitions and his speech therapist sent home a note and an email this week that said when it was his turn to go to speech the other day, he said "oh man" but got up and went with her.  Typically, if he is in a preferred activity, this can be very difficult.  She even commented how it's hard to tell some days why he can be so compliant while other days the very same thing can be a challenge. 

 



 Chris and I talk about this very same thing at times and even though we go through these really positive times, we continue to reinforce the behaviors and the things that can cause difficult for him.  I truly believe, however, that the end of this really long winter brought a little slump for both kids that legitimately affected their moods and behavior. In NO way am I making an excuse, but now that we are getting outside a lot more we definitely see a big difference. 

 

We have also been seeing a really nice trend in how the kids are playing together overall.  Colin has always had some difficulties with initiating appropriate play with his peers so we really hope that as he continues to make really big strides at home, this will translate to school as well.  

 

We had a really great 1st day at the beach and are looking forward to many more still yet to come!

Birthday Celebrations

Last weekend we celebrated both kids' birthdays with a family/friend party at our house.  Now that the kids understand birthdays, they were both talking about it nonstop leading up to the day and even when some of the preparations started to go up, they grew even more excited.  

 

 

We are extremely grateful for the friends and family that we have in our life as they were extremely generous in celebrating Kailey turning 3 and Colin turning 5 (yikes, in just 2 weeks!).  Even more important for us is the fact that we are all together and that means more than anything.  

One thing that I do find interesting about our kids is the fact that after so much stimulation and celebrating, they do need their down time as well.  At one point, both Colin and Kailey were missing and were found in their own bedrooms sitting there reading books.  I guess they just needed to take a break.  

 

So far we have only truly celebrated Kaiiley's actual birthday, but one thing that I have been pleasantly surprised about is the fact that the kids get it when it's just one of their birthdays.  Although they both got gifts at the joint party, they both understand when it's not about them and are willing to forgo the spotlight to celebrate the other.  

 

We had a great time!  Happy Birthday to Kailey and Colin!

Special Olympics of NJ Spring Festival

This past weekend, the Special Olympics of NJ hosted their annual Spring Sports Festival in Wildwood, NJ.  Last year was the first year that we attended so that Colin could participate in the Young Athlete Program and had such a great time that we signed up to go back again this year.  It's a bit of a drive to Wildwood, but we thought we could make a day out of attending the events and then hitting up a great zoo in the area.  Unfortunately, the weather put a damper on those plans, but we still had a great time at the event.  

 

 

The session was approximately 45 minutes long and Colin and Kailey both did a great job at following directions during some of the activities and free play.  There are times that Colin decides he'd rather do his own thing, but we try to keep him on task because in school, this is what he needs to do a lot of the time (and one area he can struggle with).  

 

One area that Colin has really excelled in lately is with his gross motor skills and he really enjoys participating in sports related activities.  The only downside is that Colin does tire more easily than other kids (Kailey included) so when he has reached his limit, you will often find him sitting down to take a break, or he will decide that he is just done and "doesn't want to" participate any longer.  He typically has a solid 30 minutes in him and you can usually tell when this time is up because his internal timer must go off and he will sit down. 

 

One of the activities that Miss Andrea had the kids participate in was a relay activity where they had to hold a basketball, jump over 3 bars set up, bounce the basketball in 3 different hoops a certain amount of times depending on the number in the ring and then run back to tag their partner.  

 

Being the typical Mother Hen that I am, I found myself hovering during the activity directing Colin at certain points because I wanted to make sure he was following directions the correct way.  However, I realized that Colin was being really attentive to Miss Andrea and actually following HER directions, that I backed up.  I have to remind myself sometimes that Colin doesn't always need me butting in to help him.  I got a video of the very end (I missed the great part in the beginning where Colin jumped over the bars holding the basketball and did awesome!).  At the end of the video, you even hear me giving instructions when Miss Andrea is already doing so.  I'm learning! 

 



 

 

 

When we were done with the Young Athlete Program, we grabbed some lunch and then went to cheer on some of the teams that were playing basketball in their tournament.  The kids had a great time and were really supportive!

 

We have some REALLY exciting events coming up with the Special Olympics in May and June that I can't wait to chat about!

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...