31 for 21 Day 3: Feeding Therapy and Inclusion

I had planned to continue on talking about inclusion today more formally, until I received a note from Colin's teacher about something exciting that happened at school yesterday. Then I decided to switch gears and go with the flow when I realized that it all has to do with inclusion anyway. 

 

Despite having some difficulties with drinking from a bottle as a newborn, Colin still progressed through early foods quite normally when it was time to start with baby food. We noticed, though, that he did not like some of the typical baby snacks that most kids ate like cheerios or puffs. We hit a halt when we started to introduce the stage 3 foods (which I am not even sure are even made anymore). We were able to get him to eat some types of table food like pastina and cottage cheese but we struggled to get him to move beyond those soft foods.

 

One of our speech therapists through Early Intervention referred us to a feeding clinic in North Jersey that we worked with for over a year but made very little progress with. We felt a lot of it had to do with the forceful approach that was utilized to get Colin to eat. We took a break from it for awhile and saw tiny bits of progress with time. He had more willingness to try different foods but we still were stuck with his eating cottage cheese and strawberries for three meals a day.

 



 

We finally started therapy again a clinic closer to our home with a therapist who has been FANTASTIC. Through the past 2 years, Colin has slowly tried different foods and has even added new foods to his rotation. He no longer eats cottage cheese 3 meals a day, but has added in some choices with dinner. We find that he is more likely to try new foods if he is curious about what we are eating when we eat at times that are not at the dinner table formally as a family. For example, the other night, he ate quite a bit of Chinese food that Chris and I were eating much later than the other 2. He is now eating (regularly) pasta with sauce, pizza, perdue chicken nuggets with strawberries, ice cream, yogurt, sandwich (regular white bread) with various lunch meats, and pancakes.  

Colin @ Feeding Therapy from Kelli Tobin on Vimeo.

Yesterday in Colin's notebook, there was a note that said:

"FYI: A lot of kids were buying today and he said he was too...we let him and he did great AND he ate the pizza and drank the milk (skim). The fruit was apples so he didn't want it but _ and _ said he did great!"

He wanted to do what the other kids were doing, and he did! It was so exciting for Chris and I to receive this type of note because of the years of difficulties we have had with Colin's eating. While we still have a long ways to go, this was HUGE! I guess now I actually have to start looking at the lunch menu instead of throwing it right in the garbage!

31 for 21 Day 2: Colin as a Kindergartener

Unless you are totally new to this blog, you have been familiar with our journey in Colin's education over the past year and a half. Chris and I have always felt that an inclusive education would be best for Colin, and were even more confident in that after spending years doing research on including students with Down Syndrome. 

 

Colin started Kindergarten last year in a general education class and we found the entire year to be challenging and filled with anxiety. Half way through the year at an IEP meeting in which we had hired an advocate for, we were presented with an IEP that would place Colin in a self contained setting for the majority of the day (instead of supporting him in the setting he was already in). Because we didn't agree, we filed for mediation and eventually due process when we couldn't come to an agreement with the district on where Colin should be placed.

 

Our hearing (trial) was set to start the last week of August but after arriving, the judge initiated the beginning of a settlement which we ultimately agreed to. While I can't really speak on all terms of the settlement, the biggest issue was having Colin retained in Kindergarten with new teachers. In addition, there will be some evaluations done that could ultimately result in more supports if needed.

Four weeks into the school year as a Kindergartener (again), we are finding that Colin is having the year we had hoped for last year. The dynamic between the main three people working with him seems to be very cohesive and collaborative on finding ways to allow him to be successful. In addition, he is happy to go and be at school and enjoys to tell us about his day. We had an informal meeting today just to discuss his progress and I was moved to tears a few times listening to them talk about all of the creative ways they have attempted to make things work for him. It is evident that they are embracing this opportunity to help Colin succeed in a way we always knew he could.

 

Colin has made such progress in just 4 weeks of time, all of which was presented to us in a very positive and upbeat manner. I found myself breathing out a little bit each minute that ticked by in the meeting listening to his teachers share stories about Colin being a "character", being more productive than not, how smart he is, and even better, how there have been instances of him being rewarded for being the "best listener". He's been talking a bit at home about a girl that he has become friends with but it was interesting listening to the teachers share stories about how she can actually be distracting to him at times (like on the carpet) because she wants to be close to him and talk to him. His paraprofessional went out and bought a few things to create a "reward box" that she uses as a motivator to get him to finish tasks and they have various charts and cards to help him with transitions. They were telling us about ideas they had to help with the glasses wearing. What I heard in that meeting was that we had a group of people that were trying really hard with Colin.

 

 

Colin is a Kindergartener now and we are so happy with how this year is going. We are so proud of him and of all the progress he has made. And most especially, we are thankful to a group of people who are accepting Colin for who he is, for knowing that he is capable, and for being patient with him.

31 for 21 Day 1: Meet Colin!

Welcome to October, also known as Down Syndrome Awareness Month! I am so happy you've come to check out the blog because I have so much about Colin I'd love to share over the course of the next month. Today's post is all about introducing (or re-introducing) Colin to you. 

 

Colin is a 6 year old little boy with Down Syndrome, or Trisomy 21. Down Syndrome is a genetic condition in which all of the cells in the body have an extra copy of chromosome 21.  This added chromosome alters development and causes some of the common characteristics known to people with Down Syndrome. We didn't know that Colin had Down Syndrome until his birth and that fact initially scared us. However, from where we stand 6 years later, I can only assure you that he has changed our life in so many profound ways and we are better people because of him.

 

Colin is happy, loving, funny, spunky, athletic and empathetic towards others' feelings. His favorite food is vanilla ice cream and cottage cheese with strawberries. He loves playing and watching sports, especially soccer, basketball and baseball. He loves being with his family most of all. He is currently in Kindergarten (repeating) and has a very busy after school activity schedule. He loves singing and dancing and has a great ability of memorizing the lyrics to songs.

 

We want people to know after this week that Colin is like most 6 year old little boys but we also want people to recognize that he has challenges that make aspects of life more difficult than those same peers. I look forward to sharing this next month with you!

31 for 21 Challenge

October is National Down Syndrome Awareness month and every year, a group of bloggers take on the challenge of blogging every day for the entire month of October (31 days for Trisomy 21 - 3 copies of the 21st chromosome). While I have struggled lately with my blogging personally (lots of stress has felt like it's blocked my ability to write), I look forward to this challenge and for raising awareness for Down Syndrome. 

 

Some of the topics I plan to tackle over the next month:

• Inclusion (this alone has a lot of sub topics)
• Colin's 2nd year of Kindergarten
• Due Process
• Colin's difficulties with transitions
• Colin's activities

• Colin's current eye status (he has glasses!)
• Feeding therapy
• Colin's general progress in life

• Life as a family of 5
• Kailey and Cody

And whatever else may spur my writing. I'm not going to feel stressed about it but I do feel I have a lot to talk about so we will see what happens starting on Thursday!

SONJ One More Tri

 

 

A little while back, we received an email asking Young Athlete families about an opportunity to volunteer together for Special Olympics New Jersey's One More Tri event. We were excited at the chance to be on the other end of things, to volunteer together as a family for the event. When we first signed up, we were assigned to a water station at the start of the running portion of the race. However, we ended up getting moved to the finish line so the kids could hand out medals to all of the finishers.  

 

It was such a great day and a great opportunity for the kids to learn about being helpers. They were so good today, especially considering we arrived at the check-in at 6:30am. They walked to our first station, "helped" get set up with water, and then handed out the medals from the first finisher to the last.

It was pretty neat because Chris knew the top finisher and Colin gave him his medal.

Even better, Colin's Uncle Brian competed in the event, so they were able to give him his medal too (and a hug!).

 

 

What I enjoyed today was seeing the excitement on the kids' faces as they helped pass out the medals and then even more so, the reactions of some of the finishers as they accepted their medals. Despite being exhausted at the finish, many stopped and bent down so the kids could put the medals over their heads. A few came back and asked to take pictures with Colin or just to thank him.

 

It was such a great day supporting Special Olympics and all of the participating athletes! 

 

 

Getting Back in the Swing of Things



 

Every year over the course of the last few weeks of the summer, I start to get anxious to get back into a "normal" routine again with structure where everyone follows a day to day schedule. It is always coming off of a GREAT summer (this summer was a fantastic one) but I start to find that everyone breaks down a little bit and I always attribute it to the lack of real schedule we follow over the summer. I happily anticipate the new routine and then find myself emotional (like today) when that routine gets going again and everyone has a lot of difficulty getting the hang of it again. I stumbled across this graphic I had saved from last year and I found it fitting to apply to my post today. 

 

The summer was so fantastic for many reasons, but also mostly because we got to take a real break for awhile from the exhaustion of the past school year and all of the legal stuff we were going through. While things are definitely starting off on a positive foot, a lot of the anxieties have crept back a bit as we transition back to this routine again. On day three for Colin returning back to school, we are finding that while he seems to be really enjoying school, he has also become extremely emotional at times he isn't typically affected.

 

Colin's heightened emotions are attributed to several things. First, this new schedule takes some getting used to again and Colin is left feeling pretty exhausted at the end of each day. Secondly, he has spent his entire summer with one of both of us and now he is transitioning to an entire day spent separated from us. Since we started the process of talking about, introducing him to, and starting school again last week, he has cried at his last two karate classes and then today, cried when his occupational therapist came to get him from the waiting area at therapy today (he is always so happy to go with her so that came as a surprise).

 

We know Colin is tired and exhausted when we see some behaviors start to appear. He is a child who seeks sensory stimulation on a regular basis (likes to rub his hands and fingers along strings, the edge of clothing or paper, rub eyelashes, etc.) and when he is more tired than usual, these sensory seeking behaviors occur more often and for greater lengths of time. In talking with his private occupational therapist today, she was explaining that while he is still sensory seeking, he then uses those behaviors because he finds them to be calming. He came home today with some pretty shredded socks because he must have been playing with the strings along the edges of the socks to make himself feel better.

 



 

We also start to see a little blip on his overall behavior because of this exhaustion (digging his heels in a little more during transitions at home, behavior with his sister, etc.) but he also becomes more aware of the effects of his behavior. For example, Kailey was upset because he wasn't sharing toys with her tonight. Since SHE was ALSO tired, she went on about how sad she was and started crying. Watching her cry and explaining how sad she felt caused him to start crying. After forcing him to apologize and her give forgiveness, I left the room and observed from afar as he watched her and then asked her if she stopped crying. When she answered yes and said she was now happy, he turned to her and said "Kailey, I'm really sorry" and she answered with "that's ok Colin, I forgive you" and they hugged it out all on their own.

 

Overall, from Colin's perspective, it seems as though he is enjoying school and is happy with his new teachers. He happily gets on the bus in the morning and waves goodbye and is happy when the bus pulls up at the end of the day. He talks about them with a big smile on his face and gives me tiny tidbits from his day. I know this is a new transition and something he needs to get used to but I always find myself having a hard time (and feeling more emotional myself) because I just want to speed up time and get us all through this hardest part (wouldn't that be nice!).  

 

In the meantime, we are trying to help him in any way we can. I have made a visual schedule for the big picture of his day which we go over before he leaves for school in the morning, I made a social story about him going back to Kindergarten, and we talk about school and his new teachers as much as possible. I also made a sheet with a list of the things we did over the weekend with attached pictures so that he has some assistance in communicating with this teachers and friends at school.

I know that change is never easy and I can talk myself through the fact we will all come out on the other side. I look forward to see all of the things that Colin is going to do and accomplish this year in Kindergarten, but I also think it's going to require him to learn a new way of doing things and in some ways, forget a little bit about how he did them last year. I know it's just going to take us all some time to get used to the transition.

 



I can understand why Colin was particularly emotional today as we had a pretty great ending to our summer this past weekend!

 

1st Day of School

Today was Colin's first official day of school and from the way it sounded, it was a pretty positive day. That came as much relief to this Mommy who was on edge all day waiting to see my little boy again. I've gotten a really good positive feeling from the 3 new people who will be working with Colin as he repeats Kindergarten this year. We just have to have faith that things are as they should be right now. 

 

Since my last time writing, a lot has happened over here (and yes, Colin got glasses!). Instead of beginning the due process hearing, we ended up spending 8.5 hours at court to ultimately settle with the district. There is a lot about that I can't discuss at this time, but Chris and I feel we made a decision that was best for Colin for his immediate future.  

 

Colin is now repeating Kindergarten in an inclusion Kindergarten class in his home school with a new general education teacher, special education teacher and paraprofessional. After a positive first day, we are hoping for a positive year. Colin has grown up so much over this summer that on his end, we think things will just be different. 

 

 

He was so excited to get on the bus this morning and happily waved goodbye. During out bedtime talks tonight, he did tell me he cried on the bus, but it sounds like he got it together by the time he got to school. 

 

 

Back in February, when we had the IEP meeting where a self contained placement was recommended, we sat in the car with our advocate after the meeting where she told us that we would have to have the "stomach for this". This has been a very difficult time for us in our advocating what we believe is right for Colin. However deep down, we still believe it's what's best. And so, onward we move...

 

 

 

Colin started a new adventure today and we couldn't be more proud...

 

 

Kailey and Cody also started school this week and although it's been a transition for both, they did pretty well. 

 

 

Kailey has been crying for weeks now that she was ready to go back, but had a bit of crying at school after waking up from her nap (she missed us). However, she loves going and is happy to be back.

 

It's been a bit tough for Cody, but he's made progress of transitioning over the past 2 days. We know it's going to be a great school year for all!