31 for 21: Monkeying Around (28)

Our little monkey...

31 for 21: Reach for the Sky (27)

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Dear Colin,

The world is yours for rockin'.
No looking back, no stopping.
Make it everything you want it to be.
I like to play guitar, 
I think I'll go far.
We'll share our music in every city.

You gotta love what you do.
Make every note ring true, now.
Sing it from your heart.
Inside we are all stars.

Reach for the sky.
Show everybody what we can do.
It's our time to shine.
Just take a chance and believe in you.
The music's contagious,
This feelings outrageous,
We're making our dreams come true.
Hold your hopes high.
Reach for the sky.

Keep the music playing.
turn the volume up, crank it.
We got so many tools to share with you.
Yeah! Move to the beat
Get Up! Dane in the street.
Watch out! The Fresh Beat Band's coming through.


You gotta love what you do.
Make every note ring true, now.
Sing it from your heart.
Inside we are all stars.



Reach for the sky.
Show everybody what we can do.
It's our time to shine.
Just take a chance and believe in you.
The music's contagious,
This feelings outrageous,
We're making our dreams come true.
Hold your hopes high.
Reach for the sky.

We love you!!
Love,
Mommy, Daddy, and Kailey

31 for 21: Friday (26)

So many things are swirling around in my head on this Friday.  I am completely filled with worry over this upcoming Hurricane that is about to hit the coast of NJ on Monday.  It's one thing when it's just you and your husband hunkering down somewhere but throw some little kids into the mix and the anxiety level goes through the roof!  I have as many supplies that will help us as I can, but I also worry about the power going out and the ONLY foods Colin eats are refrigerated.  So, lots to think about and only hope that things are not as bad as they are making it seem.  "Historic proportions" did not feel so encouraging when I read it earlier today.  

Colin's language has really been continuing to improve lately.  There are so many words that are emerging and with time, I know that it will come easier to him.  I just wish sometimes I could understand some of the things he has been trying to say because the poor guy gets so frustrated when we don't know.  

It's hard to believe Down Syndrome awareness month is coming to a close soon! More to come over the last few days (given that I still have an internet connection/power!)!

31 for 21: Retarded - NOT Acceptable

It is simply NOT acceptable to use the word retarded.  It is hurtful, mean, and derogatory towards anyone who has an intellectual disability.  

I think this is the most powerful video out there regarding the use of the word retarded.  Please spread the word and tell those around you who DO use it that it's NOT ok.  Please....

31 for 21: Behavior (24)

Last night Chris and I attended a seminar that was at the Special Olympics facility, put on by the Central New Jersey Down Syndrome Association, and presented by Dr. Pipan, the clinical director of the Trisomy 21 clinic at CHOP.  Those of you that were at the the NDSC conference this past summer in Washington DC may have heard this talk by Dr. Pipan on behavior issues in children with Down Syndrome, and I didn't realize that Chris and I had heard some of it until she started speaking.  We didn't actually hear much of that talk because that was one of the seminars that we were worrying about what the kids were doing.  I was really interested in this topic as we have been presented with some behavior issues lately that we have been addressing and just wanted as much information as possible.  

I found this presentation to be extremely useful for us, but it's also one of those situations where I have an abundance of information and not really sure on where to start with it in our own house!  Dr. Pipan first addressed the multitude of behavior issues seen in children with DS (and typical children as well).  Most of us could identify different behaviors without needing a list.  The interesting thing was that she also discussed the "why" which included sensory, cognitive, social, communication and emotional issues for children with DS and other things like to get what the child wants, get out of doing something they don't want, and getting attention in ALL children.  After speaking about the all of the possible "whys", she also addressed possible solutions to these issues.  

There were a couple of things that stood out for us specifically addressing behaviors we see in Colin.  One of the behaviors that was listed was something called "dangling" and she explained it as though the child was literally hanging an object in front of them and just letting it dangle or hang there.  I never thought of this as a behavior before, but is something that Colin does all. the. time.  Most of the time, Colin seems to do it when he is bored or most especially, tired.  He typically will take a stuffed animal and just let it hang in front of him and will bounce it up and down over and over again.  She addressed possible reasons for this behavior as sensory seeking (definitely an issue for Colin), sensory processing difficulties, inability to organize activities or just boredom.  What I found interesting is that this is a behavior that we have literally seen Colin do for 30+ minutes straight but NEVER thought much of this.  While I think this may be a boredom/being tired issue, I can see it being a self-soothing sort of mechanism and also potentially being because of an inability to organize activities.  Now, this is not saying that Colin never decides on activities himself because he certainly does (especially when it comes to causing trouble) or initiates activities with Kailey, however, I have noticed through the past few years that there has never been a specific toy or activity that Colin will try or seek out on his own.  In addition, I will often see Colin on the camera at the daycare sitting off by himself "dangling" and then sitting there by himself the entire time.  Sometimes I think he just needs help figuring out what activity he could do instead.  Some of the solutions were obvious like helping him organize an activity, ignore/redirect, have an activities schedule to keep him busy or just ignore it when there are things you want to get done (because it's not necessarily a bad behavior but there are certainly reasons behind it).  

Another issue we are starting to face lately is the "eloping" behavior, or going off in a different direction than intended.  Now, I don't think that Colin is necessarily a runner, but, I think that he sees this behavior as a game (he is usually laughing when he darts from the driveway to the street, or when we are walking down a sidewalk and he turns and runs in the other direction).  However, it clearly is a safety issue which we are addressing.  In fact, for the first time since April, Colin was scolded at school (public school) for walking out of the classroom.  They watched him walk out and let him go a ways to see where he would head and noticed that he was smiling/laughing.  When they got him, they talked about safety in a stern voice.  He knows this is something he shouldn't do which is evident by his behavior, but he still needs to learn.  

So why this behavior?  Well, another reason could be the cognitive delays like difficulty shifting attention (behaviors like kids don't want to leave preferred activities, slow processing (takes a longer time to think things through, selective attention to preferred interests, difficulty problem solving, etc.  These are definitely things that we face (particularly with potty training - there is ALWAYS something he would rather do) and I can see that he has some difficulty thinking things through sometimes.  As Dr. Pipan said, ALL kids never think about the past or see the future, it's only the present.  I could literally comment on these things for paragraphs in things I see in Colin.  

Solutions to the cognitive aspect are helpful.  She mentioned things like visual cues (Chris and I are going to get a stop sign for the end of our driveway, right in the middle since Colin knows what stop means), social stories (taking pictures so that you can prepare your kids for what will happen next - I was thinking I could do this for potty training, showing Colin that he will sit on potty, then ____ preferred activity he would like to do) so he sees what comes next, transition songs (like "clean up clean up everybody everywhere!", etc.), allow time for processing, visual timer so the kids see the color change when it's time to move on to next activity, etc.  

There is so much I got from this, so we need to figure out how and when we should try some of these solutions.  It's always helpful to know "why" some of the behaviors happen the way they do...If you are interested in more information, feel free to email me and I can send you more of my notes!  There is just way too much to keep organized in a post without babbling!

31 for 21: Oh These Two (23)

These two kids are the most fun, cute, adorable but exhausting little kids.  We are constantly keeping busy on the weekends because inactivity in the house often leads to disaster.  There are days when they can play and get along really well, and other times, I feel like I am in the center of the ring keeping them apart.  Some days are pretty "easy", while other days, I am dealing with something like this...

or aptly titled "grocery shopping hell" because I had to pull Kailey out of the car when Colin was hurting her. And then, she was crying because I had to put the items she was playing with on the belt, and Colin wanted to get "down" and Kailey was just crying because...And I know people were staring at me and giving me that look (you know, the judgmental one) because it's obviously unsafe to have Kailey sitting in the short little basket on TOP of the car, but you know what, I was monitoring it and in that moment, it's the only thing I could do to keep Colin from hitting her in the car.  

But then other days, they are little friends that actually communicate and play together nicely. He calls her "yay-yee" and she calls him "Cah-een".  The other day when we were going to the Special Olympics event, I took a few pictures of the kids in their t-shirts posing together nicely.  

Here he's telling her to look at the camera...

Cah-een, you are so funny!

They sure keep me busy and on my toes, and exhaust me completely, but I love 'em...

31 for 21: Self Help Skills (22)

I stopped looking at the developmental charts a long time ago, so I'm not exactly sure where "undressing" falls age wise on the charts, but Colin is slowly starting to accomplish some of these skills.  He is REALLY into the self help skills of taking off his clothes, particularly his shirt, and working on the pants and the diapers now too.  He uses his shoes against us in the car because he takes those off with ease (even the ones with laces) and often chucks them at us in the front (to be funny, not mean of course).

We took it as a sign that maybe he was more ready than we thought for potty training, but we have seen no change in terms of his undressing and being put on the potty.  The response we get is the same, that he will go, but we still don't see much in terms of his telling us he has to go.  

Some days we literally can't keep the clothes on him and thankfully, we have not come across a scene that I have read about on some of the other blogs (regardless of whether or not the child has special needs) where the child has left some nice presents all over.  Please help us if it ever gets that bad because Colin's poop is not something that would be a fun present to find given that he only eats dairy.  I don't think i need to explain any more...

While yay! Colin's accomplishing some self-help skills, it is difficult to teach him the difference between when it's Ok to take off the clothes, and when it's not.  

I definitely get a chuckle each time, but let's home we get the reverse skill too where he can easily put the clothes back on...

31 for 21: Special Olympics Fall Festival (21)

Colin had his Special Olympics fall festival in which he participated in the Young Athlete Program with Miss Andrea and Coach Greg.  Just to remind you, this was the first event Colin ever participated in last year...

...the one where he wasn't walking yet and was still being stubborn in how much he wanted to stand up...

...and today  he was running all over the place, being just as stubborn, but in other ways.  

Again, I am reminded about how much changes in one year.  I can't believe the feelings that I was going through this time last year when I just wanted Colin to get up and go and this year, I was running after him trying to keep him AND his sister contained in one spot.  

When Colin got there, he was one of the only athletes (with Kailey) and was being very stubborn because he seemed a bit overwhelmed (ALL of the volunteers wanted to help him, which was great, but he often needs to ease into things like this first).  However, he eventually warmed up a bit and had a great time!

The volunteers were really nice and helpful and some of the ones that succeeded the most with Colin were the ones that slowly joined in in what he was doing, or sat with him on the ground and just started talking to him.  

Colin LOVES Coach Greg and usually tries to butter him up to get out of doing something by giving him hugs.  Coach Greg isn't a fool...

Kailey is really shy around people she doesn't know to the point it almost comes off as rude, but she warmed up too and got involved in some of the activities...

It was another fun year! 

31 for 21: Friends (20)

I wish I knew back when Colin was born how lucky I was going to be because of the friends that I would meet along the way.  Back when Colin had just turned one, we had the opportunity to meet a blogging friend, Adrienne, and her family at the beach.  Our boys are only 1 month apart and have many similar challenges, so it's been nice to have someone to relate to and talk to along the way.  

We have since now met a handful of times in the past few years and I feel lucky because it's one of the types of friends that when you "meet", it feels like you have been friends with for a long time.  We met up today as they were visiting their old hometown and although it was a little more stressful this time (my kids like to run in OPPOSITE directions), it was great as always to spend time together.  I even got to meet some new friends too! 

Looking forward to the next time Adrienne!

thanks Barbara for the pictures!

31 for 21: Potty Training (19)

Of all of the things I have had to do so far as a parent in the short 3.5 years, I hate strongly dislike potty training the most.  Chris and I decided to wait to start potty training Colin until after the summer (when he was about 3 years and 5 months).  We had briefly introduced a small potty to Colin somewhere around 2.5 but he absolutely hated the thing.  We also decided to wait because he never even said any sort of words to indicate he had to go, or had gone.  And to be quite honest, we really were just avoiding the whole issue.  

We decided to try out a potty seat that went on the toilet when we finally gave in and started. So far, Colin seems to be the most comfortable with that.  Overall, I don't think the process has been that  bad but I don't think we are anywhere near underwear and independence just yet.  

We are at a point right now where Colin will go on the potty as long as we put him there.  We have specific times in the day when he goes at home and then his teachers continue to follow through at school.  It's really interesting to me because Colin's behaviors regarding potty training are completely different in each location. 

At home lately, he will fight and cry and put up a fight getting there, but once he is on it, he will go 99% of the time.  He loves the celebrating and cheering.  At the public school, he has not got once in a month and a half and up until yesterday when I sent in a potty seat (apparently even the toddler toilet was too big) he wouldn't even sit there very long.  At the daycare (which is the most shocking of all), he independently walks into the bathroom, says "bath", gets on the potty and goes all by himself.  

Based on all of my prior experience with accomplishing skills, I know that this will happen but I think I am the most impatient (internally of course) with this one.  He will do it when he is ready, but it's so interesting to me to see so many different things surrounding it every day!

31 for 21: Throwback Thursday (18)

One year ago today...my how things change!!

31 for 21: Normal (17)

Long before Kailey was born, things started to become pretty "normal" for us as a family.  We started thinking less about Down Syndrome as we realized that we really were just a typical family.  However, this became even more evident when Kailey was born because there were so many issues that we faced just BECAUSE we had an infant and a toddler in the house.  

Kailey is so different than Colin in many ways.  For as calm and relaxed as Colin always was as a baby, Kailey has not been.  Can I just say drama?!  Kailey is the throw yourself on the floor and see if anyone is looking but then if no one is looking get right back up kind of girl.  She loves her shoes (Chris, I think you are in BIG trouble), loves carrying anything around hooked on her arm like a purse, and is really starting to become more interested in dolls and stuffed animals as "babies".  

In every sense of the word, she IS a girl, but, also loves to run around and play games and throw a ball like the rest of them.  Her language is emerging and really taking off which is so new to us. It has been interesting just because we have never experienced a skill explosion quite like this before.  

She is sassy and silly and gives the best hugs and kisses.  She can already count to 10 unprompted and I won't be surprised if the letters aren't far behind.  I guess all of that focus we have put on those things in our house have been picked up by a curious little girl...

We may have some extra chromosomes here in addition to a "typical" child, but we really are just like any other "normal" (ha!) family out there...