I'm sitting here with a lot of emotions running through me tonight. We are just coming off of a whirlwind of a holiday week that was one of the best ones yet, I'm feeling disappointed because the Christmas decorations are down, feeling grateful as I look back over 2014 in pictures (video at the bottom!), and also feeling a little sad as I will be returning to work on Monday. I have been so lucky to have been home for as long as I have and I have really enjoyed my time with Cody and being so available for the other kids. 2014 has been so wonderful despite some major challenges and I am a little sad to see it go. However, I love looking forward to all of the things that are in store for all of us. We couldn't have asked for a better ending to 2014.
Tuesday, December 30, 2014
Saturday, December 20, 2014
I recently met up with a mom of a beautiful little girl with Down Syndrome who is a little over a year old. We were chatting about her progress in different areas and talking about Early Intervention. I told her how far removed I felt from that time in Colin's life yet the memories were still so vivid in remembering how far Colin has come in the last 5.5 years. Throw in some #tbt (throwback Thursday) picture digging to find some gems of Colin when he was little and with some of our favorite therapists, and so many things came rushing back.
One thing I have always been so grateful for on our journey with Colin is that we have been given the gift to slow down time. Because things have always happened on his time and when he was ready with all of the necessary skills needed, we have always been able to celebrate the little things that tend to get passed by with typical kids. Watching that little girl crawl around reminded me of each little success we celebrated because the end result always took so long to get to.
Being with that family that day was a good reminder that I needed to take some time to look back and see how far Colin has come. I have to laugh because there were so many things during those years that felt so hard and I had trouble seeing what the end would be like in the future for accomplishing a particular skill. Those things that we struggled with and worried about seem so silly now with the things that we feel are our "bigger issues" (Kindergarten success) BUT it's all part of the journey and I think life has a funny way of preparing you for what's to come.
It's no secret that Colin's year of Kindergarten has been a little bit more of a struggle that we had anticipated and working through can be frustrating and very discouraging at times. However, as I scrolled through some of those YouTube videos of Colin when he was younger, particular that video above, I am reminded how Chris and I have always believed in Colin and have always pushed him through each of those challenges. Colin sat on that little piano bench as I made him stand up over and over and over again. I can honestly say that every day has its own unique challenges where some days I feel like patting myself on the back at the end of it and others, well, let's just say some adult beverages call my name. But the thing is, we keep pushing and working and cheering our way through each challenge knowing that we will all get through to the other side.
I've been asked more than I would like to admit if the current struggles have caused Chris and I to change our minds about Colin's placement in a general education classroom. My answer is no and will continue to be no. The thing is, I believe in Colin and know what he is capable of. We made an educated decision based on the support of 30 years of research for children with disabilities in inclusive settings. We didn't make a decision solely on something that we want but on a combination of research and the belief that our child is capable when given the right tools to support him.
Just like all of those days that we made Colin practice standing over and over again, we will continue to "stand up" over and over again in support of his education and what he needs to be successful. This IS hard and I've cried more tears out of frustration for Colin but I know what he is capable of. We just need to continue to work to set him up in the best possible environment so that he can continue to make the progress we know he can make. The key is a mindset for all involved that he can do it and the tools to make it happen.
While figuring out the academic component is still a work in progress, we have seen so many successes along the way for Colin. It was fun listening to him sing songs the other night and hearing the clarity in his words. It's amazing to hear all of the words, phrases and even sentences that have been pouring out of his mouth lately. I had to pull up a video when Colin was "talking" but we couldn't understand anything he was saying.
...and this is him the other night singing his songs.
While some of the behaviors that have been new this year can be challenging, I have also spent a lot of time researching and have found many strategies that we have been using that have been successful (more on those in another post). Just tonight, while we were on the way to the bathroom, he started rubbing my arm (instead of hitting it out of disgust for having to get ready for bed) and I was focused on something else that I didn't praise him for it right away (we implemented this strategy by asking him to do something we preferred like arm rubbing to replace something we didn't want him doing like hitting). He started saying "Mom! Look what I am doing!" with a big smile and so we did a happy dance because even though he was frustrated for having to get ready for bed, he chose the alternate positive behavior as opposed to one we didn't like without being prompted to do so.
He has been so helpful and loving with Cody and will generally do most things when asked. That's not to say that every day is perfect because there are lots of days when it seems like nothing works, but the progress is there.
Spending that time with the family with the little girl with Down Syndrome the other day was just what I needed to slow down for a minute to look at how far Colin has come and to celebrate the things that ARE going well. I felt like we lost sight of this a little bit because what ISN'T going well is always being highlighted and we are constantly seeing things show up that states it isn't believed that Colin is where he should be in school. I'm praying for answers for this but in the meantime, I am going to continue to be so proud of Colin for how far he has come and for all of the things that he IS accomplishing.
Oh and this HUGE success happened today! Colin's been really into puzzles lately and so we have been working together daily on putting puzzles together. I noticed from afar today that he had taken out the Frozen puzzle and started putting it together all by himself (that in itself was HUGE because he ALWAYS asks for help when he wants to do a puzzle). He got about 3/4 of the way through and then got a little frustrated so I sat with him to offer moral support and he finished the WHOLE thing by himself. We are SO PROUD of him!
Friday, December 12, 2014
Today marks the day that Cody has now been with us for 3 months. I think it's pretty cliché to say, but it's hard to believe that the time has gone by so quickly because it feels like he's always been here with us.
I have really enjoyed my time home with him and am feeling a little sad that I will be going back to work (although I know he will be in GREAT hands at Good Hands Daycare), especially because now he is interacting so much more. He has been smiling and starting to giggle all of the time and loves it when you talk to him. He is just starting to get to the point where he knows when you leave the room and I can often hear him start to whine until I return.
One of the things I love about him is that his cheeks are so rosy and warm. They make me want to kiss them all of the time.
The one thing he hates the most is tummy time, although he is slowly becoming a little bit more tolerant of it. He is not a fan of snuggling tight in your arms (cradled in your arms) but he does like being held "loosely" or sitting in your lap either looking at you or just resting there. The easiest way to get him to go to sleep at times other than bedtime is to have him moving either in his bouncy seat or the car seat. Since we are always on the go, he is generally sleeping most of the time he is in that seat.
I am starting to notice more now that when he is on his play mat he is getting close to rolling from his back to his tummy as he reaches for the some of the toys. I honestly thought Kailey moved him the one day and I reminded her she could only do that when I was around. She kept arguing with me saying that she did NOT move him and now I see that he probably moved himself!
Since the week of Thanksgiving, he's been sleeping 8-9 hours at night although his wake up time is creeping earlier and earlier. We just tried oatmeal for the first time today because he just never seemed content after drinking a bottle even though they are pretty hefty bottles already. He seemed to like it so hopefully it will help a little bit.
Looking forward to the next month with our Cody. We love him so much!
Tuesday, December 9, 2014
The Special Olympics of NJ has been doing an event for the past six years now called the Jingle All the Way 3K. It's such a fun event because there is a short race followed by a holiday inspired party inside afterwards. There is a visit from Santa and lots of fun holiday cheer.
This year was particularly great because they had a 1K so I was able to participate in that with Colin and Kailey.
It's funny because Kailey basically took off from Colin and I and despite my best efforts to get her to wait for us, she went ahead anyway and finished the race ahead of us.
In addition, Colin's Uncle Brian, Aunt Maureen, Aunt Beth and Uncle Jason all participated with support from Nana and Granddad.
By the time we got inside, Colin was tired from a late night the night before and then running the majority of the race by himself. When we got inside, he kept asking me when we were going home so after a little bit, I started packing up to get ready. However, then they started playing music and he started dancing with Aunt Beth. Then it was near impossible to get him to leave!
Sunday, December 7, 2014
I'm sitting here with the Christmas lights glowing, the leftover little mess from a filled house of family, and three little kids sleeping away a busy weekend feeling very happy and "filled". My family celebrated a combination of Thanksgiving, Christmas and my parent's 35th wedding anniversary on Saturday since my one brother and his family will be spending their Christmas traveling. It's very true what they say that the holiday doesn't always have to be celebrated on the specific day as long as you are all together.
We had a really great time together and the kids got their very first taste of opening presents. They were so excited but still understand that Christmas is a few weeks away.
We had a great feast and it was so nice to have all 13 of us around the table together.
We took our series of annual family pictures even though Cody wasn't up for cooperating in the beginning. We love our serious and then silly family photos!
We also celebrated my parent's 35th wedding anniversary. We are really lucky to have such a great example of selfless, true love in my parents.