Monday, March 25, 2013

Thankful for Gifts

Sometimes I have these thoughts and feelings in my head surrounding Colin, Down Syndrome, our family and even my life that formulate this blog post in my head, but when I sit down to write, I have a hard time articulating my feelings into words.  I don't talk about my religious beliefs on here too much, but our faith plays a large role in our life.  Chris and I were married in our church, had our kids baptized, and have started them out in the Sunday School program.  It's important to me and I am thankful for the community of people we have found in our church.  Colin has always been treated like any other kid there and I feel really proud as they are starting to learn some of the important aspects of just being at the church.  They both walk in the door every day, greet the "greeters" by shaking hands, and say hi to everyone that they pass.  They sit *quietly* when it's appropriate and although the Sunday School thing with Colin has been a bit more of a challenge (he doesn't quite follow the same rules there that he does at school), he does have his good days where he does what he is supposed to.  

This past Sunday, on Palm Sunday, the church had some of the children walk in during the opening hymn waving their palms just like the people did for Jesus when he was entering the city.  My kids followed the rest of the group around the church and when it was time, got up to sing "Hosanna" with the choir.  My heart swelled with pride as tears fell down my cheeks watching Colin and Kailey stand up there.  As you know, Colin's communication skills are a work in progress, so I wasn't sure if he would actually sing, but he DID and he sang the right words too.  When he was born, the common thing that Chris and I were told was that "God doesn't give you more than you can handle" and there was something about that saying that always bothered me.  As the years go by, it becomes even more evident that we weren't given something to handle, we were given a truly amazing gift.  God gave us a very special gift when Down Syndrome entered into our lives through Colin.  

(The first 10 seconds, the choir is still singing and then the kids join in.  I was only getting little snippets because I was enjoying watching so much....but he pretty much sang the entire thing.  In other clip I have, Kailey was up there

For the most part though, are lives are really quite normal.  There are so many times in my day with the kids that I actually think to myself how normal it is.  Down Syndrome isn't there every day.  There are things that we devote  more time to in this house to help Colin learn better, but it's much like you spend time teaching any child how to do certain things.  

I am really, really, really thankful for the blessings in my life and for the things that both Colin and Kailey bring to it from their own personalities.  

I am thankful for the adorable little sass, spunk and love I get from Kailey

Princess shoes at ALL times lately...

...and for the loving, funny spunk I get from Colin.

They BOTH make us proud in their own ways....

So tonight, my heart is thankful for the gifts I received, not because I could "handle" them but because they were true gifts....

Here's one other video of Colin singing his favorite song from public school...Mahalo means thank you.  We literally play it so much I often wake up in the middle of the night and the first thing that pops into my head are the words being sung.....Colin adds his own little personality to it though.  Please don't mind that he's on the potty (this song is an incentive) and you have to wait about 30 seconds before he really gets into it.

Finally, if you have about 15 minutes, I urge you to watch this story about a young man with Down Syndrome who amazes me.  Beautiful story...

Wednesday, March 20, 2013

3-21 World Down Syndrome Awareness Day!

March 21st marks WORLD Down Syndrome awareness day, a day chosen to represent 3 copies of the 21st chromosome.  We are just over one month shy of Colin's 4 year birthday and I am amazed at how far we have all come in this journey.  While we may not always be jumping up and down screaming Down Syndrome to raise awareness, I feel like Colin champions that awareness himself.  Day by day, Colin has shown many people that he really is just like any 4 year old boy out there....and we are so proud of all that he has achieved so far.

(don't mind Kailey in the background....undressing?)
Colin certainly has his challenges when it comes to certain skills, but he works REALLY hard every day to overcome what comes so naturally to other kids.  However, he just fits right in with his typical peers in so many ways.  

One of Colin's biggest supporters is his little sister Kailey.  It has been so amazing watching these two forge a bond with each other and I can see them being the BEST of friends in the future.  Her boom in developmental skills is also helping Colin in so many ways.  

Colin's journey is just getting started and we will continue to support our little guy in everything that he does.  On World Down Syndrome day we really want you to know that while Colin may have some difficulties learning how to do some things, he really is just like his typical peers...and he is one cool little dude.  

Reading his books....

Walking down the steps all by himself!

Thursday, March 14, 2013

Dino Day and Snippets

Today in school, Colin had a dinosaur "dig" and he had to wear safari wear.  Considering we really didn't have any, we did ok!  

We have been seeing progress in the feeding area (very, very slowly) but Colin is more willing to try some new things.  Here he is just munching away on a banana!  This was the "sesame street and bananas" email that I got from Chris the other morning...

Oh the potty training woes!  Some days Colin does so great and other days (like today) he's gone more in his pull up than out!  

Tuesday, March 12, 2013

Happy Birthday Kailey!

Happy 2nd birthday to Kailey!  

The first word that always comes to mind when I think of Kailey is "sassy".  She is one spunky little girl with so much attitude that I fear what the years ahead will bring.  However, she is so incredibly loving and caring that I also look forward to seeing the kind of person she evolves into.  

Just before her 2nd birthday, Kailey's language exploded!  She is just about talking to us in full sentences and has so much to say about everything.  Unfortunately, she also has no problem speaking her mind in whines and cries when she doesn't like something as well.  She surprises us every single day with the things that she says and I think that in many ways, it is really helping with Colin's speech as well.  

Kailey had a very busy day today celebrating her very special day!  She brought cupcakes to school for all of her friends, we hung out at Colin's OT and feeding therapy, went to dinner, went to a friend's middle school championship basketball game, and THEN had some friends and family over for ice cream cake and presents!  

She was so cute about opening her presents because she really seemed to be acting like "is this really for me?!".  She seemed to love EVERYTHING she got and definitely loved the spotlight when she was being sung to.  

I have to say that I was REALLY impressed with how Colin behaved as well.  Although he kept saying "my turn" while she was opening her presents, he was never pushy and only helped when she asked.  He never got upset or acted out and patiently sat there and watched like the rest of us.  We were so proud of him for how well he behaved!

Waiting for cake...

So excited to see it coming!

Couldn't WAIT to blow out the candles!

Dear Kailey, We had SO MUCH FUN celebrating with you today and are so thankful for every bit of the girliness that you have brought to our lives.  We love watching you grow and change every day and look forward to all that is yet to come!  You are one beautiful little girl and we don't know what we would do without you!  We love you so much!! Love, Mommy, Daddy, and Colin xoxoxo

Monday, March 11, 2013

IEP Annual Review

It's so crazy to me to think about how far we have come in one year.  We had Colin's annual review today for his IEP and although we went in really positively, I think we were both pretty nervous.  We've been reading through his current IEP to see what we thought about the progress Colin had been making and although I didn't forsee or anticipate any changes, I've heard how people are often blindsided and find out something they aren't expecting.

We brought with us a box of munchkins and on it we wrote "Thank you for taking care of our munchkin!".  It went over really well so we were happy we thought to do that.  I can honestly say that I really love our team that works with Colin.  We know how hard they work with him to make progress and are also honest when he is struggling with different things.  While we did hear the things that he is struggling with, the meeting focused on all of the things he IS doing and that was a bright spot for us.  It's funny to hear how Colin's personality differs so much from one teacher/therapist to another.

By the end of the meeting, we found out that there really weren't any changes and Colin would continue to stay with his current teacher (we LOVE her) and his therapies would be the same as well.  We were thanked for the smoothness of the meeting (I honestly didn't have anything I wanted to change) so it went well for many reasons!

Phew, another one in the books....

Tuesday, March 5, 2013

Colin Tidbits

I mentioned the other day that we decided to push forward with the potty training and Colin.  He did really great over the weekend and stayed *pretty* dry in between the times (once an hour-ish) that I would put him on the potty.  However, I knew that once we pushed forward at school and daycare it would be more of  a struggle.  He has yet to go on the potty at public school (like, ever...even initially when we were trying) and while he shows much more of an interest at daycare, he really hasn't gone for them yet either.  I know that we can't expect him to be potty trained over night (wouldn't that be nice!), but it is a bit frustrating getting things worked out in terms of figuring out what works for him, what motivates him, and what will keep him from getting deterred.  I am hoping that some switch will flip and he will start telling us when he has to go, but we aren't quite there yet with that yet.  

Feeding therapy with Miss Josie is going REALLY well.  Since Colin started earlier in the year, he has made some progress in terms of what he will put in his mouth and try.  While we aren't in a place where he is eating new foods consistently, he is MUCH more willing to try certain things.  Miss Josie's approach has been great and she has really built up a trust level between her and Colin.  He will still say no to her but she is able to still work through this with different motivators.  Just today he was licking a pretzel rod, has just started trying apple sauce with her, and is more willing to "kiss" and even touch different food items like crackers and teddy grahams.  Over the weekend he had a few bites of pancake (we haven't seen that in about a year!) and tried taking a bite of Chris' chicken patty sandwich.  He is also seeing an OT right before his feeding therapy session which has seemed to help as well.  I REALLY like the OT too so it has been a good mix for Colin.  

Colin's IEP annual review is coming up on Monday and I am a bit nervous this time around.  The first time was hard because I wasn't sure what to expect but this time is just as hard because I feel like it will be important to discuss certain things the year leading up to kindergarten.  This whole thing is a work in progress for us as well as we learn the "ropes" with IEPs and getting what is best for Colin.  He has been in a self-contained class at this time because of the options, it's what is best for him in terms of class size.  I am not ready for him to move to a full inclusive class yet because the option at our school for that is only 2 hours long and there is only one aid in the classroom.  He is exposed to the full inclusive setting in his daycare preschool class anyway.  However, we feel really strongly about moving into the inclusive setting in the future, particularly for kindergarten.  There is just so much to worry about!

Finally, Colin's relationship with Kailey continues to bloom.  They really have become such great friends!

Sunday, March 3, 2013

The Weekend

This weekend was a really nice weekend and not really for any particular reason.  It was just one of those weekends where the behavior issues were pretty minimal, for the *most* part they played nicely together, we got out a bit, and in general were just together.  

I've written on here a bunch of times about the difficulties we have had with potty training which we had started back in late summer.  We tried for awhile, but it got to a point where Colin would just cry and absolutely refuse to sit on the potty.  After a few months, we decided to just stop for awhile because we felt that Colin just wasn't ready.  

I will admit that the potty training weighs heavily on my  mind because while I know that there is no sense holding time tables in my head, they are still always there.  We just started back up again about 2 weeks ago and we decided that we were going to take a slow approach.  We selected 1 time a day that we were going to put him on just to get him comfortable with the idea again.  We kept at that for about 2 weeks but noticed at the end of this past week that although he wasn't telling us he had to go, and although he wasn't always happy about going, there was just something different this time that we weren't seeing last time.  

Yesterday I decided to push a little bit and from waking up until late afternoon, I would put him on the potty about ever hour - 90 minutes and he would go every time and stayed dry in between!  We hit a snag late afternoon and I have to wonder if it's because he was tired and because he knew we were going to see the Hawks basketball (and Daddy) so they were both pretty excited.  The fold up travel potty I have does NOT fit any public toilet so despite trying at the game, he was so nervous at the wobbly seat he wouldn't go and that put an end to the day with it.  

We tried again today and he generally made it the whole day again dry (and that included the couple of hours of going to church and lunch where he refused to go in public again).  I am pleasantly surprised and just going to keep up at this now for as long as it takes.  Unfortunately, he isn't telling us he has to go so the few times he has been wet it's been a bit of a disappointment for me, but I know this will be a long process.  I'm just happy to see we turned a little corner!  

Chris' last basketball game of the season was yesterday so the kids and I went up.   They absolutely love going to see the Hawks (even though they are TERRIFIED of the actual Hawk) and if it were up to Colin and I, we could sit and watch the entire game.  Kailey, on the other hand is very antsy!

They played really well together this weekend so it was really nice for us to watch!  

I love when weekends go by so fast because they are fun!