Miss Sue's PT Update

We love when Miss Sue checks in to show us what Colin is working on at school!

CAT Crew's 4th Plunge

On February 23, 2013, team CAT Crew participated in our 4th Special Olympics of NJ Polar Bear Plunge. While the experience this year was particularly wet and cold, it was still a HUGE success as we were 46 members strong raising just over $35,000.  In our 4 years as a united team, we have managed to raise approximately $150,000.  To say that I am proud of that number would be an understatement.  

The success of our team is due to each individual member who participated in the fundraising efforts by seeking out donations from family members, friends, coworkers, local businesses, and complete strangers and setting goals to do all that they can to help.  I am so grateful to every single one of you for every penny that you have contributed to the Special Olympics because your efforts combined with the rest of the participants of the Polar Bear Plunge to raise over $1,000,000!  Colin has already benefited from all that you have contributed and will continue to for many years to come.  So, from the bottom of Chris and my hearts, we thank you...

This year the conditions were pretty sub par   The day brought temperatures of 41 degrees, steady (but light) rain and a water temperature of 37 degrees.  The rain came with a storm so the sea did not have the gentleness we have experienced in the past.  

We spent the morning with many of our team members at a buffet breakfast and had a great view overlooking the area of the beach where we were to be plunging.  Colin was so cute as we were walking along the boardwalk and into the breakfast waving at as many people as he could.  It was as if he was saying...."thank you".  

Unfortunately, Chris was unable to be here for it this year as he was away with work on a long road trip.  He was, however, there with us in spirit and "checked in" with us via skype.  As you can see by the look on his face, Colin was more than thrilled to talk to Daddy.  

At first it appeared that the conditions may have deterred plungers as the beach seemed more quiet than normal, however, the closer it got to plunge time, the more crowded it got.  This year, the plunge brought in more than 4,000 plungers!

No matter what the conditions have brought us through the years, the one thing that never changes is the excitement on the beach.  I have to admit that this year brought me some hesitation since I did not have Chris by my side to plunge with me and it was just so cold.  However, I felt my usual rush of overwhelming emotion as I watch the beach filled with so many people who contributed.  I sort of felt like an outsider looking in as I scanned my group and felt so grateful for all that my friends, family, and new team members (ones that I never even met) did to support Colin.  We are just so lucky to have this support...

The stranger from another group that was chosen to take our team picture this year did NOT do a very good job so unfortunately, all of the pictures cut off parts of the group....

I had pretty much told myself that I was not going to go under this  year since I didn't have Chris to help me and since I have still been fighting being sick.  So, when I went down to the water I went in up to my shins and then turned around and came out.  However, as I stood there in my towel, I felt this overwhelming feeling of guilt and so I ran back in and went under.  Although it was cold and shocking, it felt so much better by going all the way in...

Chris and I have been so blessed since we began this journey with Colin.  From the moment our friends and family found out that Colin was born with Down Syndrome, they have rallied around us and been his (and ours) biggest supporters.  On top of that, year after year, they have jumped into ocean water that has never been more than 38 degrees after raising money for the Special Olympics.  We are SO grateful.  

My cup runneth over...

The Special Olympics of NJ

This morning we packed up and headed out to the Special Olympics of NJ complex so that Colin (and Kailey) could participate in the Young Athlete Program.  Any time I bring up the Special Olympics and ask Colin if he wants to go, he immediately starts saying excitedly "mom! dad! basketball! soccer! jumping!" so I knew that he would be happy to go.  

In order to control them running in different directions anywhere we go, I am able to make them hold hands with each other since they don't want to hold hands with me.  It works so well in getting in out of stores and other places, especially when we have to walk through a parking lot.  

While the program is for Colin, Kailey enjoys herself as well while we are there too.  Typically, Kailey is more of my shy one and in places like this, she often hesitantly walks around afraid to talk to anyone, or will cling to my side.  However, it was really nice to see her today have some more independence and willing to hold hands and work with some of the volunteers.   

I can't help but giggle to myself because the volunteers love to help, but Colin often lasts 10 seconds and is often to the next station.  They can barely pass him the ball before he is running somewhere else.  

Things were going really well with them today up until the end.  There is a circle time with the parachute in the beginning and then a circle time at the end where they have to listen and follow directions.  Typically, they both make it through both circle times, but at the end of the 2nd one today, both were done and then would go limp when I would try to pick them up and bring them back.  Oh how I love toddlers sometimes!

The Special Olympics of Polar Bear Plunge is just 1 week away from today!  The money raised DIRECTLY benefits Colin as some of the money is used to fund programs like the YAP!  If you are interested in donating (which we would be so appreciative of), please click here to go to my personal page.  Thank you for your support!

Love and Friendship

On my way in to work today, I was feeling a bit sentimental and emotional as the sun was rising above the horizon and I was thinking about how thankful I am for all of the little blessings in my life.  I often become distracted along this route when "life" gets in the way; busy at work, busy at home, sicknesses, long winter, mundane routines, and so on.  However, I am so grateful for how much ~love~ fills my life and the unordinary places I often see it: sharing a laugh with a friend, watching my children fall into fits of giggles as they happily play with each other, speaking to a parent experiencing a new diagnosis of DS,  having abundant help from family, and the sweet little things Chris does for me....  

Not to sound cliche, but love really is all around us, but we become so busy in our everyday lives that we miss the little signs left for us.  

So today on this Valentine's day, I am thankful for being reminded of that love.  I am thankful for parents who raise their children to be sweet little friends, to look past any differences and learn how to play together even when they can't communicate in the same ways.  I am thankful for real, innocent, pure friendships...

I used to think Valentine's day was about romantic dinners and gifts from your loved ones, but today I know that it IS all about the gifts, just those that we receive when we aren't expecting them.  

Happy Valentine's day to my family, my friends that have been a part of my life journey, and most especially, to Chris, Colin, and Kailey for my gift of love every. single. day.  

Feeding Therapy Update

Colin has been attending feeding therapy at the new location for awhile now and it has been going really well.  While we haven't seen any big jumps, the gains that he has made have been very subtle.  For example, Colin has been more interested in the food that we are eating, it's just that if it gets anywhere close to his lips, he isn't sure what to do with it and then decides to refuse.  We have items on our list that we are working on and while they are challenging to do at home (because we have a very stubborn little boy), he is more willing to do them at school.  These items include: putting things he regularly eats (pudding, yogurt) in a different container like a regular bowl to improve upon his flexibility, messy food play (this doesn't go well when he has no interest), and exposing him to different foods with the idea of simply just getting him to touch it at first.  Miss Josie is great and I am really comfortable with the things that she is doing with Colin.  

At Josie's suggestion, we got an eval for OT through the same rehabilitation facility with the hopes that working on some sensory input prior to the feeding therapy would help the feeding sessions.  Miss Marybeth has been great and I can tell that Colin really likes her as well.  We chatted for awhile today and I immediately felt as though I could share different things with her.  She has a plan for Colin each time so that he knows exactly what they will be working on and although she says he has been "lightly" testing her, he is willing to follow through with the task when the demand is placed again.  She is REALLY happy with his behavior and the tasks he is working on.  She said more than once what a pleasure it is to work with Colin.  

While I wish progress happened "quickly", I am really happy so far with having started this up again at the location we are going to.  Not to mention, although I wasn't originally thrilled with an hour and half sitting in a waiting room, I am now more than happy to spend 90 minutes alone getting some paperwork and reading accomplished!  Win-win!

Behavior, Continued

During a normal school and work week, one of the hardest parts of our day is the time just after getting home until we all sit down for dinner.  It's a tough transition here because Colin and Kailey can't seem to get themselves into playing independently and for obvious reasons, are both vying for our attention (which is a challenge as we unpack from the day and get dinner ready).  The majority of the behavior issues we see are due to the fact that they cannot play nicely together at this time.  Colin often is in trouble or timeout during this time, not because he is being malicious to her, but because she wants nothing to do with his attention (in her face wanting to play with her).  As I mentioned yesterday, she is DRAMA and often displays her displeasure with foul faces and and whining/crying.  

While I know that this is a time for both to test their limits (and us!), it is not always easy.  One of the series of pictures I caught tonight at dinner show how much Colin is imitating right now.  I am sure that a lot of his behaviors have to do with Colin imitating others (good and bad) and is trying these things out.  I also think that once the communication barrier starts to fall down, he will then be able to express himself more easily.  

During dinner, Colin wanted to sit as close to Chris as possible.  Every motion that Chris did with his fork and food, Colin watched carefully and did the same thing at the same time.  

I just desperately wish this imitating of behaviors w.orked for potty training as well!  I know that I posted a few months back about how much of a challenge potty training was because Colin became increasingly agitated with it.  We eventually decided to take a break and revisit this issue at a later time when we thought he would be more ready.  During these past few months, nothing has changed in terms of his interest level or even talking about going.  Occasionally, he will tell us that he is going pee-pees in his diaper, but that's really the extent.

I am not going to lie, but the anxiety level surrounding the accomplishing of this skill is through the roof.  I know that he will do this in his own time when he is ready, but I also think we need to start exposing him more and more so that it just becomes part of his routine.  I went to the store tonight and bought some supplies to create some sort of "potty chart".  We need to come up with some symbols or pictures that Colxin can adhere to the chart (I bought velcro stickers to apply to whatever laminated pictures we come up with).  I want this to be fun, but after night #1 starting with anger tears from him, I just feel overwhelmed in terms of how we are going to get through this.  We know that the method of many times in a day is just not going to work with him.  In any skill, he has never been ok with overwhelming him when he just doesn't want to do something.  So, we are going to start with after dinner every night for awhile until he adjusts to that and then just starting adding more per day.

Sigh, I REALLY wish I didn't have to do this one!

Behavior

We are now at the ages with both kids that we spend a LOT of time working on behavior for both of them.   While we do spend a good time in "wedded bliss", i.e., they happily play together, this is certainly not the majority.  I feel that our biggest issue right now in terms of Colin's behavior is his continued difficulty in communication.  While we have seen some good progress since he started back up at school again in September, he still lacks the ability to effectively tell someone when he doesn't want them doing something to him, with him, for him, etc.  For example, our biggest hurdle we are tackling right now is the fact that instead of using words to tell someone he doesn't want something when they are in his personal space, he will push instead.  This happens a LOT with Kailey because she will get too close or ask Colin for something and his immediate response some of those times is just to push her away.  He uses key words like "no, stop, go" but often can't connect them to WHAT he is staying no, stop, or go (go away) to.  

While Kailey's responses aren't so physical, her behavior is just as evident as Colin's.  Kailey is Miss DRAMA!  She can hold a solid "grudge" (hands over her face, huffing, not looking at you) for a solid 5-10 minutes before she will speak again.  We are trying not to feed into the drama at all because just like we don't want Colin thinking pushing is ok, we also don't want her thinking that HER behaviors are ok either.  

While many times I feel like I am out of my chair every 2 seconds, I do think that Chris and I are consistent with our discipline.  Some days it feels really frustrating because we don't feel like we are doing anything right (especially when they continue a behavior over and over and over again) I do know and try to remind myself that a lot of it IS their ages and as long as we continue to be consistent and follow through, I think we will see the rewards when the time comes.  Colin KNOWS when he does something wrong which is evident with his body language, Kailey quickly reacts and tries to butter back up, and even if it takes 10 times of telling them to pick up the mess they just made, with assistance, they will do it.  I just keep in the back of my mind something one of the teachers at Colin's school said at a behavior talk...."if you make a demand of the child (pick _______ up), you keep the demand going until they follow through no matter how long it takes".  However, she did also say that you shouldn't place a demand on a child that you want them to follow through with if you don't have the time to follow through (for example, rushing to get out the door).  So, we just keep the demand going around here! (Even though we don't always FEEL like getting up 100 times!).

Colin's Progress in PT

Every once in awhile we are surprised with an email from Colin's physical therapist at school telling us about something exciting he is working on or accomplishing.  When I get emails like this lately, I can't help but think "JUST one year ago Colin started walking".  She wanted to tell us that he has been working on the trapeze and he has been able to hold on and swing for a few seconds with assistance.  Love seeing how strong he's becoming!

In the next video, she told us not to mind her excited squeaky voice (she said she gets just as excited as when her kids were making these sorts of accomplishments) but she was so happy because it takes a lot of balance and core strength in order to jump consecutively the way he does at the end of the video.  Not only do I love the accomplishments he is making in the video, but I also the love the fact he just keeps going back to the "start line" to try again.  

Feeding Therapy Update

Colin has been at the feeding therapy route this time around for awhile now.  While I can not report on any significant gains, we do occasionally see little glimmers of hope that there might be a change coming in the future.  Overall, Colin seems more interested in different foods, it's just that if they get close to his mouth he suddenly realizes he doesn't want it (or necessarily know what to do with it).  Miss Josie has been working really hard with him, however, her philosophy is never to force anything, so it is a slow process.  

At Miss Josie's suggestion, we had an OT eval done at the same rehab facility and just today, Colin started OT prior to his feeding therapy session.  While it is a lot at once, he has been really receptive to working with new people and his new therapist today that he was a good listener and did what was asked of him.  She is going to continue to work on the same things he does in school OT (handwriting, hand strengthening, isolating digits, particularly the pointer, etc.) but add in some sensory components as well.  I REALLY liked her approach in the fact that she set up a  little picture "schedule" for Colin so that he knew exactly what he was going to be doing while with her.  He was really  hesitant to go with her and let out a small cry when it was time for me to separate but when I peeked back, he was happily walking with her.  

It's crazy though...how often do I send my child off with "complete strangers" when it's time to start these new therapies.  I guess it's just something that we get used to in this realm of the world.  

Overall, we are really happy with how things are going and stick to the philosophy "slow and steady wins the race".  

Climbing the Bus Steps

I got a voice message from Chris that was absolutely adorable because it was filled with excitement as he told me that  Colin walked up to the bus and climbed the bus steps ALL by himself today!!  This is such a big accomplishment because the bottom step is a tough one since it's so much higher up.  He has come such a long way between gross motor skills AND his confidence to leave Daddy to get on the bus for school by himself!!  

It's the little things we celebrate around here!