Tuesday, January 26, 2016

Sleep Troubles

Throughout most of the summer, all three of the kids were sleeping exceptionally well because they were so tired from the day that no one got up much at night, if at all. Just after school started, when we started to notice some behavioral signs from Colin (loud noises affected him, he complained his ears/throat hurt, etc.) we also started to notice some big changes in his sleep patterns. He was getting up multiple times at night which we attributed at first to him having to go to the bathroom, but then we started to notice the frequency of him getting up was increasing and when we would lay with him to get him back to sleep, we found that his sleep was extremely restless. Coinciding with this was the trip to the ENT where we found out that his tonsils and adenoids needed to come out because they were blocking his airway when sleeping as well as causing a buildup of fluid in his ears

We had the tonsillectomy scheduled but the sleep issue got so bad that we started to break one of our rules for ourselves and let Colin start getting in our bed because we were just so tired from getting up so many times a night with him. We also felt bad for him because he was clearly uncomfortable from everything going on that we wanted to do whatever we could to make him feel comfortable.

After the surgery and recovery, we honestly expected to see this issue ALMOST disappear because we thought it would have "cured" the sleep problem. However, at Colin's follow up visit to the ENT (when things had only SLIGHTLY improved), we found out that the fluid filled back up in one of his ears causing a failed hearing test in that ear and the need for a tube to be put in (going in on Feb. 15th).

Lately, it has felt as though we have a newborn in the house again because he's been getting up every 2 hours at night and is not sleeping well at all. Combined with the symptoms he's probably experiencing from the fluid build-up, the behaviors from the habit of being allowed to get in our bed, and the horrible cold he's had has made for some pretty tough nights lately. We have started to transition back to putting him back in his bed each time but it's hard when we are up so many times at night. Tonight I tried making his bed with the same flannel sheets we have on our bed with the hopes he finds some comfort in that (he was VERY excited when he got in bed tonight). I am also hoping this next surgery gives him the relief he doesn't even know he's seeking from all of his discomfort.

For Colin, his discomfort manifests itself in different ways than most kids. After having this cold for over a week, I took him to urgent care over the weekend to make sure he didn't have an ear infection and because of some of the signs he was exhibiting. However, we found it to still be a cold and so we were trying to give him some relief in other ways. However, since the weekend, his obvious discomfort has been displayed through behaviors we haven't seen in a really long time that are non-stop. It really came to a head today when I got to daycare to pick him up (his school was still closed due to snow) and he just had a weepy meltdown mess that took a long time to calm him down from. On a whim I decided to take him to the pediatrician because I knew he had not made any improvements and last night was the worst night yet. Now he's being treated for a sinus infection so I'm praying this little man gets some relief he desperately needs.

Despite the challenging afternoon, there was a bright spot because he actually ate an entire plate of chicken nuggets and French fries! For Colin, this is bigger than I could adequately put into words! One more little step in this feeding challenge journey we have been on with him.

Hoping and praying for a more restful night of sleep for ALL of us and also praying for some answers to all of this very soon!

Tuesday, January 19, 2016


When my family started to spread out a little bit more and some of us had other parts of family to get together with, it became a little bit difficult to be together ON Christmas or Thanksgiving all together every year. One year, we came up with a date that fell somewhere in between Thanksgiving and Christmas and we endearingly named it "Thanksmas". This year, that date actually fell after Christmas and we decided to try and meet in the middle (both of my brothers and families living in North Carolina) in Washington D.C. for a family weekend. We've learned through the years that you can make a holiday happen whenever you want it to and so this year, Thanksmas in D.C. was our holiday.
After some debate, Chris and I decided to leave with the kids after school on Friday to prevent us from having to get up too early on Saturday. Everyone stayed awake the entire trip until Cody fell asleep with only a short distance to go. Apparently, that was enough of a power nap and we couldn't get him to go down until after midnight sometime and we had to let him cry it out with hopes he wouldn't wake Colin or Kailey.

Thankfully we had an adjoining room with my parents so Chis and I walked the hallway with him and when that didn't work, I took him for a long walk in the underground mall of the hotel (which didn't work either).

Thankfully the repercussions of a late night were minimal the next day while we were out and about. We all boarded the Metro and visited the Museum of Natural History, some of the monuments and the White House which Kailey named the "United States House". 


In search of the "perfect spot" for a family photo, we decided on a location at the bottom of the hill from the Washington Monument and found someone we deemed trustworthy to take the photo. It was a great shot of the family but we realized afterwards that she actually missed the entire monument. We really could have been anywhere in that photo.

After some downtime back at the hotel, we had a big family dinner out and then spent the night back at the hotel together playing games and exchanging gifts. It was nice there was the option for the adjoining rooms so we could put the kids down and then still hang out with the rest of the family.

There were some challenges traveling with three young children (that in itself is worthy of its own blog post) but overall it was such a wonderful "Thanksmas". Holidays with family are what you make of them and WHEN you make them... 

Tuesday, January 12, 2016

Behavior (Colin, Kailey, AND Cody)

Through the years, a lot of the posts I have done in regards to behavior have been mostly about Colin because his behaviors had more of an impact outside of our home. I talked a lot about it last year because they were the "elephant in the room" so to speak when it came to school. I think that something we are always going to talk about with Colin will be behavior because for him, they are always a sign of communication and it's often a result of some of his "life challenges" (for example - transitions) or difficulties with certain aspects of life. However, Chris and I are facing some challenges in general with all 3 of the kids in terms of their behavior. 
During late fall this year, Colin was observed by a BCBA certified behaviorist in school several times. During this time, she collected data on behaviors he was most commonly exhibiting as well as data that would help her to determine the functions of the behaviors. From these observations, she determined that a BIP (behavior intervention plan) was warranted so she developed one specific to him and his behaviors and trained the staff on a system that was to be utilized in school. In addition, the staff is collecting daily data which is being reviewed by the behaviorist regularly. The system they are using is a positive reward system where he earns tokens for good behavior towards a reward of his choosing. What is motivating to Colin often changes, so we are all working to find ideas that will formulate a good choice board for him. 
The majority of the behaviors that are seen at school are task avoidance behaviors but as mentioned, there are now strategies in place to tackle these behaviors. At home, the behaviors we see more often are noncompliance over anything else. However, we also use different strategies that make this better like racing to the bathroom for baths, bedtime, etc., giving him a warning about what's coming next, talking out our schedules, and various other "games" to get him to comply to different things. For the most part, we've got things in a pretty good routine, but that's not to say that it's not frustrating at different times (like the morning) when he's slow to comply or doesn't want to at all. This year, we've got a really good routine with homework and he's always compliant to get it done. 

I feel that at this point, I can anticipate a lot of Colin's next moves and know what we need to do to keep things flowing at home. It is essential that our routines and schedules are consistent and for the most part, Colin knows what to expect. Our other difficulty is the bickering among siblings, but that's equal among ALL of them.

Our challenges with Kailey feel like we shouldn't be dealing with them for another 8 years or so because they mostly have to do with her attitude and compliance. At school, this is not something they deal with at all but at home, there is a lot of whining, complaining, and "whimpering" (this drives me the craziest).

I find that my patience level for Kailey and her behaviors is a lot less than it is for Colin. I think this is because in some ways, hers are actually more challenging because there is so much more verbal behaviors involved. She has also started ignoring us in ways that's more like selective hearing. We have to repeat ourselves many times just to get her to complete a task.

I also think that some of her behaviors at the end of the day are because she's tired and her whininess is how she communicates this tiredness. With her, there's a lot of stomping and arms crossed when she's unhappy and at her extremes, there's a lot of crying.

However, we do depend on her a lot because she is so extremely helpful, especially with Cody, and I think sometimes we forget that she IS only 4 years old.

Finally, with Cody, our biggest difficulties lie in the fact that he is 16 months old and desperately wants to be as independent as Colin and Kailey and wants to be doing exactly what they are doing. He is our most advanced child at this age simply because he is always trying to copy Colin and Kailey and what they are doing. This can be very challenging for us because he CAN'T always be as independent as he THINKS he is.

This most challenging behavior we deal with is the crying because we aren't letting him do something he wants to do or thinks he can do. He's the child of ours that makes the dramatic scenes of crying or throwing himself down on the floor (gently) when something doesn't go his way. He insists on carrying his own lunch box and backpack (just like the other 2) at daycare even when it's too heavy for him.

He also doesn't like to be carried anywhere because he wants to walk by himself even when it's not safe for him to do so. He wants to feed himself and if you try to help him? Oh no, the world is ending.

I think they all have their challenges, but right now, Cody is the variable that makes things the most difficult. He's just at a point where he wants to be like Colin and Kailey, but can't be, and then that frustrates him immensely.

Even with all of their challenges, there are also the things we love about each of them the most...the things we try to remember when they are making things so difficult!

Saturday, January 9, 2016

Special Olympics Young Athlete Floor Hockey Tournament

Today was the annual Special Olympics New Jersey Floor Hockey Tournament held at Stockton College. Included in this tournament is a section devoted to the young athletes and as always, we had a great experience! 

It's been a little bit since we have participated in a Special Olympics event and it felt great to be back and seeing some of our friends. The kids' had such a great time playing hockey as well as the many other activities that were set up for them.

In addition, it was a nice surprise because the NJ Devil was there along with Grant Marshall, NJ Devils alumnus. They both played with the Young Athletes, snapped pictures with Special Olympic Athletes and signed autographs. Kailey was so enamored with the NJ Devil that she spent a lot of time running after him and he made her happy by playing wit her a lot. I was so proud of Colin because he's typically so nervous and fearful around any mascot but he was brave enough to snap a picture, give a high five and even wait for an autograph.

As always, it was another great event put on by Special Olympics! We are grateful for our friends and connections we have made through there! 


Saturday, January 2, 2016

The Holidays

Tonight as I sit here, the Christmas decorations are all packed up and life is about to resume into the normal every day grind but I'm going through pictures and reflecting on the 2015 Christmas season. The buildup is always so exciting but busy with the rush of getting ready and participating in all of the holiday activities. Afterwards, it always feels as though it passed by so quickly leaving a little bit of disappointment that the "magical" season is over. 

While each year seems to get better as the kids get older, this year was not quite what we were expecting due to some illnesses that passed through most of the vacation. However, there were many moments to be thankful for as we were all together and got to spend the holidays celebrating with family.

This year was unique and fun because Cody was really into everything just like the other two (except for Santa - he liked him from afar but NOT up close). We're in an interesting phase right now because he desperately wants to do everything that Colin and Kailey are doing but "forgets" that he is only 15 months old. It makes for some challenging times but also keeps us on our toes! 

For Colin, this week has been a disruption in his normal routines which can be more difficult for him than for anyone else. Colin has an easier time when he knows what to expect and when things are pretty consistent day after day. He does have an ability to go with the flow, but we often need to explain or give him time to transition through the difficulties of something different. 

While I greatly enjoy my time with my family during vacation, I can always tell when it's time to go back to our normal routines because everyone starts to have some difficulty. Despite the disappointing parts of vacation, there have been lots of great moments too and I am thankful for this magical season with my family. There is NOTHING like the joy of Christmas through the eyes of children.

We are looking forward to all that is in store for our family in 2016!