The Christmas Tree is Up!

There is a family owned farm market near where I work that sells Christmas trees every year and is where we like to buy our trees from.  We tried once or twice to all go out as a family through the years to pick out trees, but trying to coordinate our schedules to do that was very difficult.  A couple of years ago, I swung by the farm market after work, picked one out in two minutes, it was put on my car for me and I brought it home to decorate on a weekday night.  It worked out so well that we've done that year after year.  Cody and I drove down earlier this week and picked out a tree (it was the first tree I held up) and went to Kailey's school to pick her up.  I told her I had a surprise for her (they had been asking about a Christmas tree for awhile) and I knew she would be excited. 

 

 

Her reaction when we got out to the car was priceless and she literally jumped up and down for joy.  

 

 

Chris had been away with work for days and didn't get home until too late in the evening that night to decorate, so we left it out in the garage until the kids went to bed.  We got it up in the stand that night and the next day when Colin and Kailey woke up, they were so excited to see it up in their living room.  They were pretending to decorate it before school.  

 

 

 

It was difficult to hold them off until after school, and then we had some technical difficulties getting the lights on the tree (we always do), so they could barely contain themselves by the time it was ready to decorate.  

 

They went and picked out their own ornaments, happily posed for a picture, and then very excitedly ran to put it on the tree. 

Each time they would exclaim that it was "just perfect" and then would run back for more. 

Last year they liked to clump all of their ornaments right in the front bottom of the tree but this year, they expanded their "clumps" to other areas of the tree.  I actually haven't moved too many because I love the way THEIR arrangement of decorations look and think it gives the tree a lot of character.

 

 Listening to the two of them interact as they decided on placement and then hung the ornaments up was hysterical.  There was a lot of "good job Colin/Kailey!", "that's perfect!", "there! I loooovvvee it!". 

Despite the stresses and challenges from that day, it was easy (for the moment) to let it all disappear as I watched the two them excitedly decorate their tree.  It truly is something to see how much happiness pours out of them through different traditions so far this holiday season. 

 

 

 

 

Now we just have to remind them of their daily "rules": 1. Don't touch the tree. 2. Don't touch the ornaments.  (Rules 1 and 2 are broken daily.)

 

The Holidays are Here!

There really is nothing quite like the holiday season, especially when the kids understand what is happening.  EVERYTHING to them is something to marvel at or get excited over and it really starts to bring back those feelings for me that I used to have when I was younger.  The holidays have always been an exciting time, but the magic really returns with the kids involved.  It's so nice to have so many wonderful things going on through the month of December to help deal with all of the other things in life that are so challenging and bring on so much stress. 

 

To kick off the holiday season, I brought the kids to see Santa at Colin's Karate school.  While Colin DID sit on Santa's lap last year, he was extremely nervous and it was short lived.  Even at the mention of seeing Santa this year, we got a lot of "no! I don't want to" from him because I just don't think he knew what to expect.  These are very typical responses for Colin when he just doesn't know or is uncomfortable about something he might not fully understand.  Chris was away with work and so I had my parents come to help not knowing who would interact with Santa, who would need me, and so on.  It was a big help that it was at Colin's Karate school since he is comfortable with the location and he had time to warm up to being there before Santa even arrived.  We were actually in the bathroom when Santa walked in ringing bells and their faces lit up and they ran out of the room.   

 

Kailey seemed really nervous at first, but Santa cautiously walked over and very calmly started talking to her and then she warmed up enough to give him a hug. 

I honestly thought Colin was going to have a hard time until he warmed up and got used to Santa being in the room.  He actually surprised me and he didn't get upset at all and when it was his turn, very happily walked over and gave Santa a hug.  I think Santa was extremely helpful in how he approached the kids and got down to their level when talking to them. 

He was so happy to see him and there was not one tear or nervous look on Colin's face which was great progress for him!

Santa then went and sat in his chair and we waited on line for the kids to actually sit on his lap.  They ran right over and climbed up so I didn't have any difficulty in getting a picture with him. 

Even Cody cooperated so that I could get a picture of all three together with Santa!

Kailey easily answered that she wanted a "dolly" for Christmas but I am not sure that Colin really understands that telling Santa what you want means that he will bring a gift and leave it under the Christmas tree.  We're getting there though!

Thanksgiving Post

The first thing I think of when I hear the word thankfulness is my little family of five.  

 

Life with three kids these days is crazy and hectic (and makes me want to pull my hair out some days) BUT, I wouldn't trade it for anything.  There's a lot of love in this house and I am so grateful to have so much.  This Thanksgiving I had a lot to be thankful for. 

Taking family photos was surprisingly easy!

Although I'm not so sure Cody would agree...

This year for Thanksgiving we had Chris' family over.  We had a full turkey dinner and lots of good company.  It's exciting that the holiday season has begun and I'm looking forward to all of the wonderful things that lie ahead. 

Karate Lessons

Sometime last year, a local Karate school went to Colin's daycare on a day he wasn't in public school and did a Karate lesson with his class (they still do this 2x a month).  He had talked a lot about it then and so the thought had crossed my mind to sign him up for lessons but I never followed through.  This year when the behavior issues associated with school started, the idea came into my head again and so we called and set up a trial lesson with Master Dave.  Chris took him to the first lesson and he LOVED it.  

 

 

 

 

Because the lesson went so well, we decided to sign Colin up for private lessons with Master Dave.  We really think Master Dave is PERFECT for Colin as he has a lot of patience, is great with praising him for the things he does well and for following directions, but is also stern with him when necessary.  I could tell from the first day that Dave felt comfortable working with Colin and the simplest thing to say is that he is just really great with him.  Colin works the entire 30 minutes with him and does a really good job listening to what he has to say.  

 

  

We are looking forward to all of the many things that Colin will learn from participating in Karate.  There are so many benefits to it and it's appearing to be an activity Colin really likes.

 

 

 

Potty Business

Before Colin started his second full year of pre-k (he was 4), I made a book for him to have at school that he could use for speech therapy or in class.  The book was all about his summer vacation and loaded with pictures that he could use to talk about while in school.  When Colin finished pre-k last year, the book came home and it's been hanging around and occasionally read.  One of Kailey's choices the other night at bedtime was the book and on one of the pages, I had highlighted the fact the kids spent several days in potty training "boot camp" (3 day method).  While Chris was reading the book, I had to laugh because it was so long ago that we had started working on potty training (Colin was around 3 when he started) and here we are  just finally getting to a place where I can confidently say that Colin is just about there.  There have been SO MANY posts about our trials and tribulations when it came to this process (Kailey wasn't easy either, my *typically* developing child - for the record) and in fact, I was really nervous when Colin started Kindergarten this year because he still wasn't fully communicating the fact he had to go.  

 

I can honestly say that we have come SO FAR and although it takes a lot of work every day, Colin has really made such great progress.  When school first started, Colin did really well and only had a few accidents (but only because of having to poop) but it prompted the nurse to set up a "potty plan" for him.  We really scheduled his bathroom breaks to ensure that he went enough during the day so that he wouldn't have an accident.  It has worked really well and I can count on one hand (or less) how many accidents he has had since school started.  In addition, while he is still mostly schedule trained, he is finally communicating the majority of the time when he has to go and we are seeing fewer and fewer accidents (and they usually are related to poop accidents).  We are doing a lot of celebrating around here when he does tell us because of how well he is doing.  I still feel that we really have to be on top of him because depending on how tired he is or what activity he is doing, he may not say anything and go for a long period of time (which then causes an accident).  We just make sure that he goes plenty of times and then if he tells us, it's a bonus. We are so happy with this progress! 

More About Colin's Behavior

In the last post that I wrote, I eluded to the fact that we have been dealing with some challenging behaviors with Colin.  This has become a more recent challenge for us as they have worsened a bit with time.  This has been quite stressful for me because it's never easy to hear the negative things that he does in a day.  While we can actually explain most of the reasons to the behaviors, it's still difficult.  At the last meeting we had with school, we were all in agreement that a lot of the causes to the behaviors were stemming from frustration.  Some changes were made to his IEP and in addition, we consented to a FBA (functional behavior assessment) to be done by the district.  In this case, a behaviorist comes in, observes the child in their environment and then develops a plan to deal with the behaviors. 

 

In the meantime, I have spent a lot of time researching this topic, speaking with people more experienced with this than me, watching videos/webinars, and scouring different internet sites with the hopes that I may find some strategies that could assist us at home and Colin's teachers at school.  I recently posted in a facebook group that I belong to specifically about inclusion for kids with Down Syndrome and received a lot of feedback but in particular, the most helpful piece of advice I got was to watch a video of a talk given by Dr. David Stein at a conference on the topic of behavior in children with Down Syndrome.  It was EXCELLENT and provided me with so much information that I found to be incredibly helpful.  I included that video below because it truly is a valuable piece of research on this topic. 

 

I have been hesitant on posting the specifics about Colin's behavior because I wasn't sure how I could post about the topic without my frustrations pouring out in the form of words on the screen.  I have been incredibly emotional on the topic as I have seen so much change in Colin and fear that I haven't been able to "fix" it.  However, this talk shed a LOT of light as to the scientific/medical reasons (differences in the brains of kids with DS versus their typical peers) behind the behaviors as well as other influencing factors.  Because of the brain differences among kids with DS, the influencing factors include things like difficulty with executive functioning (reasons why kids with DS tend to be more impulsive), language, socially, information processing, and motivationally.  

 

I felt better after watching the talk just because I had a better understanding as to why this is so challenging with Colin.  Because of these differences, when things are frustrating and overwhelming for him, he is going to communicate in ways that might be different for him than they would be for typically developing children.  The easy part is now in understanding but the hard part is still in the execution of the strategies to help improve upon the behaviors.  I really liked Dr. Stein because he addressed some things that I found to be helpful for me emotionally.  One point he touched on was the fact that while it's easy for him to explain all of this, he understands that the execution IS hard. 

 

Some of the challenging behaviors include: yelling, hitting (when he's REALLY frustrated and it's mostly me that deals with that), running (he's doing it on purpose because he knows he's getting a reaction out of us) and avoiding doing things asked of him.  A lot of the time you can tell he's frustrated.  In school, the behaviors include crawling on the floor or going under his desk to avoid work, using his hands inappropriately, etc. 

One simple change we have made at home is in utilizing a visual schedule.  This is helpful because Colin can SEE what is coming next and we give him time to prepare and transition to the next thing.  This is helpful for tasks he DOESN'T want to complete because then he usually sees something more motivational following the nonpreferred activity.  Another strategy that Dr. Stein talks about is really in emphasizing the positive behaviors.  In addition, unless it's something that needs to be addressed immediately because of a safety issue, trying not to address the negative behaviors (because even negative attention IS attention to that behavior). 

The thing is, despite the fact that these behaviors are occurring, Colin is still his lovable sweet self.  Even on the hardest days that I have had with him, he still has so many moments where he is being really good and we see our hard work paying off.  He is helpful, loving, playful, fun, etc.  It's not all bad and discouraging. 

 

In an alternate way to work on Colin following directions, we tried out an introductory lesson to Karate today.  It was something we've been wanting to do for awhile and felt that  Colin might benefit from it.  He LOVED it and so we are looking forward to seeing the benefits of this kind of activity for him.  I'll definitely keep you posted on that one!  

 

 

So yes, dealing with this current challenge IS hard because it's a job that requires CONSTANT attention.  We still see the positives and we will keep working...