Tuesday, February 24, 2015

Colin's Karate Progress

In late fall, Chris and I decided to sign Colin up for Karate after contemplating it for quite awhile.  Colin had tried it once at the daycare last year and so it had always been on the back of our minds.  When the challenges started at school, we thought it would be worth trying as an alternative to working on following directions and discipline as well as the natural benefits of exercise.  Colin picked it up very quickly and was very interested.  After discussing it with Colin's instructor, we all thought it would be best to do private lessons for awhile so that Colin could learn the gist before being in a class. 

Colin has had a group of really great instructors who all have the same background but slightly different styles when they work with him.  It has been good for him to work with all 3 as it allows him to adjust to the differences before going to a class.  He has two 30 minute sessions a week and has been working really hard.  Occasionally, some behaviors will pop up but they tend to be more silliness type behaviors than anything else.  Most of the time he is easy to get back into focus again quickly and other times it takes a little bit more creativity and patience to do that. 
After about two months, Colin's main teacher thought he was ready to test for his half yellow belt so that's what he did on Thursday and we are proud to say that he successfully completed the test and earned the new belt!  It was so neat to see him make this progress and then accomplish the first goal. 

We are so thankful that we have found a place that is supportive, patient and creative when it comes to working with Colin and are open to the challenge.  They are tough but kind and work him hard during every session.  They know he can accomplish the same things the other kids do, even if it takes him longer to do so. 

Below you will find a video of the test.  It took place at the end of the session so I don't think he performed some of the moves as well as he has but he knew all of them when asked which was exciting to see.  We are SO PROUD of Colin and his positive progress!

Sunday, February 22, 2015

2015 Special Olympics Polar Bear Plunge

Yesterday was CAT Crew's 6th year participating in the Special Olympics of NJ Polar Bear Plunge and I am so proud to say that it was another incredibly successful year! This year we had a team of 46 members raising just over $36,000 for the Special Olympics adding to our grand total of approximately $250,000. 

When Colin was born, Chris and I were so scared but we were so lucky because we had a group of friends and family who rallied around us and loved the 3 of us unconditionally.   CAT Crew was "born" that first year when our friend Jorie created a team in honor of Colin.  That team has grown in so many ways as it is filled with family, friends, friends of friends, former students, coworkers, etc. All of these people raised money and jumped into the ocean on a day the ocean temperature was 32 degrees and the air temperature was 27.  These 46 team members, and ALL of the people who made donations, did it for a little boy whose love spread.  In addition, the 6,000+ plungers raised over 1.5 million dollars for the thousands of Special Olympic athletes throughout NJ. 

It's amazing what people can do when they band together and have a lot of determination...

This year's plunge was the coldest and most challenging yet.  There was still snow on the beach and ice chunks down by the water.  The most painful part was actually my feet as I didn't think jumping into the water was that bad.  However, my feet hurt so badly as they warmed back up and as we walked back to the car.  However, there's nothing quite like running down to the water with THOUSANDS of people in support of a cause that directly benefits our child.

I am so thankful for all of the people who WERE CAT Crew and who have continuously SUPPORTED CAT Crew.  We are so lucky and so thankful for the love and support we have been so lucky to receive each year.  Thank you for all that you have done for Colin and all of the Special Olympic athletes.  My heart swells this weekend...

Tuesday, February 17, 2015

The Latest (and Most Disappointing) IEP Meeting to Date

I have purposely waited quite a few days to write this post because I wanted to make sure I presented an overview of our situation without so much of the emotions that would have been included had I written this the day we had our last IEP meeting.  In fact, I've also spent a few days in writing it because I keep changing around how I am approaching the subject.  The thing is, I do know that inclusion is a tough topic.  While research in this area has been supporting the inclusion of students with disabilities for many years now, the actual implementation of it has been so varied throughout the country, in each state, and even more so from district to district.  It's hardest to change the mentalities of administrators who believe in the segregated model and aren't supporting their staff members when it comes to including students with disabilities in their classrooms.  However, inclusion can only be successful if the students and staff working with those students with disabilities are supported through education, resources, training, etc. 
Just a little background first about how we got to this point...

After Colin's IEP annual review in the spring where we chose to place Colin in a general education class against the recommendation from the case manager there were a few things that needed to be solidified in order for that to happen.  One of those issues was whether or not Colin would be given a paraprofessional to assist him.  A follow up meeting was set up for June, right before school was letting out, to finalize these details and was being held at the elementary school that Colin would be attending in the fall.  Instead of this meeting being a meeting to discuss the paraprofessional and to meet the new staff, it was instead what I called an "ambush" in THIS POST because our decision was scrutinized by the new case manager (in her words, "Help me to understand why you would make this decision.") The meeting felt like an approach to get us to change our minds because after Colin's current academic progress was discussed by his teacher, the Kindergarten teacher highlighted all of the things that their Kindergarteners were able to do by the end of the year (and at what levels they were reading at). We left the meeting incredibly discouraged because although his placement was staying as we had decided, Chris and I knew that the belief was he didn't belong in a general education placement. 

When the challenges started this year, we were setting up regular meetings so that we could hopefully collaborate with the team on strategies that would assist Colin and the staff working with him improve upon where the difficulties were.  I spent a lot of time researching behavior during this time and kept stumbling across the same answer; behavior was a sign of communication.  We consented to a FBA at one of the meetings (Functional Behavior Assessment) where someone from the district (in our case it was a social worker) would come in and observe Colin and then propose a list of strategies to support Colin in the classroom. A lot of the communication we were receiving about Colin was very negative and very rarely focused on what he COULD do. 

Just before Christmas, we had set up another meeting.  We had tried to bring in a resource with experience in Down Syndrome and behaviors in the classroom who would collaborate with the staff on ways that would help Colin and those working with him.  However, we received a certified letter from the director of special services stating the resource could only come in to observe for 3 hours (not the two day plan that was requested) and they could have no communication while there with any of the staff working with him.  The goal of the meeting on our end was to discuss this further with the hopes that they would see this as a tool to help everyone but with the district's attorney present, we knew that this would not change.  We left the meeting very discouraged because we were feeling less and less like we were all collaborating together.  Most of the dialogue about Colin in the classroom was very negative and documents that we received stated or suggested he didn't belong in the general education classroom. 

At this point, Chris and I were so discouraged because we felt like we weren't getting anywhere despite all the work we were doing on our end to support Colin and the staff working with him.  We ultimately decided to enlist the help of an advocate, someone with specific experience in this very thing that could help navigate us through.  A meeting was called by us to further discuss the FBA report, the suggestions that were made, as well as to request more supports for Colin and the staff working with him.

The meeting included the district's attorney, director of special services, supervisor of special services, case manager, social worker, principal, 3 therapists, and 2 teachers.  As soon as the meeting began, I knew the direction it was going to take.  All of the staff members came with progress reports, most of which highlighted Colin's behavior and lack of progress academically.  The therapists spoke first and were dismissed from the meeting before anyone else had spoken. I was thankful to have the advocate there because she asked a lot of great questions particularly at times when I was so nervous I had trouble coming up with ones at the appropriate times.  Towards the end of the meeting, the discussion turned into the fact that 1. they felt Colin's progress was too slow compared to the other kids (this alone makes my blood boil) 2. his behavior was impacting his progress 3. they felt he belonged in a self contained classroom which was written into a new IEP. 

Chris and I would agree that Colin's progress is not what we believe it could be.  We also know that Colin needs more support than your typical child.  We know that including children with disabilities in our district is not a common practice and in fact, students are most often placed in segregated settings.  We knew that when we chose to place Colin in this setting, it was going to be a new experience (and were told it was by staff members working with him) so we knew it wasn't going to be a perfect scenario.  However, we believed that we would work together with  the team to find ways to make it work.  We didn't expect anyone to have all of the answers, but we were na├»ve enough to think it was something as simple as open communication and collaboration that would walk us all down this road.  What upset and disappointed us the most were the comments that were made in regards to his lack of tangible progress and their lack of true collaboration and effort to support "our little boy's" right to an inclusive education. Some of the members in the meeting were constantly checking their phone, whispering, and getting up while others were speaking.  Those that did the most talking were the social worker and attorney, and any suggestion we had to continue to work together was just shot down.  The attorney didn't understand why we would request training and inclusive supports for staff. In their words, it's just not working and they don't feel he "belongs" in a general education classroom. We know the staff is doing the best they can with what they have but there is always more to learn.  Inclusion is about accepting the differences of all students and supporting them as they learn and work towards their goals alongside their peers.  It's not deciding one day that it's not working and segregating them without attempting more supports, more training, more education. 

While we left the meeting heartbroken and defeated, we are not going to give up on fighting for what's right for Colin.  He shouldn't have to earn his way to learn alongside his peers. 

Saturday, February 14, 2015

Cody is 5 Months!

I'm sure I've started every post when it comes to Cody with "it's hard to believe", but it is hard to believe that Cody has already been with us for 5 months now. Newborn/baby stages seem to pass by so quickly, especially now that life has taken on the craziness that it has.  
Cody is a happy, relaxed, and loving little baby.  He's on a pretty good schedule now between bottles and food.  We're still working on adding a "dinner" but it is a little bit challenging because he's usually so tired by the time dinner time rolls around.  


He is my first baby who is really not a consistent napper.  On average, he takes a morning and afternoon nap that only last 45 minutes to an hour each.  If we are lucky, we might get a slightly longer stretch for one of the naps, but he has been this way since he's been home with us.  We can't complain too much though because he goes to bed around 6:30pm every night (he started that one) and sleeps until 5:30/6am every day. 

He eats a pretty hearty breakfast of cereal and fruit but much less at dinner and hasn't started a "lunch" yet. 

He is also the first baby of ours who will occasionally try to suck his thumb.  It's hard to tell if that's something that's going to stick, but it seems to be more lately now that we think he's teething.  None of our kids have used a pacifier (we actually tried with Colin but he couldn't suck hard enough and Kailey had no interest).  We didn't bother trying with Cody. 
While he is pretty easy going, he does like the attention and can often be heard whining if he is left alone and not getting the attention he wants.  

There is no denying how much he loves Colin and Kailey and particularly enjoys the attention from them.  He is often heard laughing and cooing at them and they provide him a lot of entertainment. 

While he has rolled over from stomach to back and back to stomach, he does not do this often.  He really despises tummy time and still to this day does last for very long when he's placed on his stomach. 


He really doesn't last that long in most structures when he is home with us because he prefers to be held and played with versus being in a seat or play structure.  


Up until a few weeks ago, he screamed every time he took a bath (I think it was mostly due to being cold).  However now, he is more than happy to take one and laughs and kicks a lot while he is in there.
He is really attracted to technology and as soon as a phone is within his reach, he trying to grab at it or get as close as he can. 
Being the third child, we've had to improvise with him at times when he's not the only one that needs something.  The toughest time of the day is between when we get home (4:30ish) and when he goes to bed (but mostly until he has the last bottle around 5:30pm).  This is very challenging because that's the time I also need to be making dinner and unpacking everyone's bags from the day.  While I was making dinner the other day, I set up a mat on the floor in the kitchen, propped up a blanket, and figured out how to give him the bottle he couldn't wait for while I made dinner.  
We just love Cody so much and love the personality and love he brings to our home.  He has the most kissable cheeks and gives the best smiles to everyone...we can't wait to see what the next month brings!



Monday, February 9, 2015

Our Journey in Including Colin

The formation of this post has really been a long time coming but it has been extremely difficult for me to find the words to express adequately how I have been feeling.  In all honesty, I have been really struggling emotionally because what Chris and I believe in and think is best for Colin is faced with so many challenges. 

When Colin was born and we were faced with his diagnosis of Down Syndrome, Chris and I struggled with what felt like a loss; a loss of a "typical" child, a loss because of what we thought he wouldn't be able to do, a loss of a "normal" future, and because now we felt like we were no longer "normal" parents.  However, we held Colin and despite our fears, fell hopelessly in love with our little boy.  Although we had to do things "normal" parents typically didn't do like welcome therapists into our home, schedule endless specialist appointments, and wait longer for milestones that happened easily with other babies, we still just saw our baby and believed in him. 

For us, life WAS normal.  Colin attended sporting events, restaurants, family parties, was never put down when we were with friends, went on vacations, sat on Santa's lap, attended a normal daycare, took swim lessons, spent summers on the beach, made new friends, attended birthday parties, rode on the train to the city, learned how to ride a bike, joined a soccer team, rode the carousel on the boardwalk, swam in the ocean and countless other things that "normal" people did.  He was easy going and happy, strong and determined, and in many ways, just a typical little boy. There was no holding Colin back; we included him just as we would any other child of ours. 
When the planning for preschool started, so did the discussions at home as to where we saw Colin in the future.  It was no longer a future that scared us, but rather, one with so much hope and potential.  We saw preschool as a time to prepare him for the years of schooling that would follow, so we embraced the special education program that worked to improve upon skills that came more naturally to other children.  However, through all of our meetings and discussions, we shared our ambitions to fully include him once he got to Kindergarten.  Despite feeling so strongly about an inclusive education for Colin, we still spent years researching the topic to ensure we were making the right decision.  The research supported how we felt. 
Despite a lot of resistance from the school district about the decision we were making, Colin was placed in an inclusive setting in his home school.  Chris and I were excited at what Colin could gain from this setting and had so much hope.  It has been no secret that this year has been so much more challenging than we could have ever imagined.  We quickly learned that including Colin was not as simple as two parties "agreeing" on the same placement.  This year has brought with it so much stress and anxiety as we have encountered behaviors and challenges along the way.
There has never been a topic in my entire life that has taken up so much of my thoughts and feelings as this inclusion topic has.  I struggle with what I feel so strongly about is best for my child and with the way others make me feel for choosing this route for Colin.  I often feel very lonely as we walk this path despite the support and love from family and friends because no one can make the hard decisions that we need to do for us, no one can solve the problems and challenges we are facing, and no one can really make things better for us.  Despite how much people love Colin, no one wants what's best for him more than his Mommy and Daddy do.  It's a challenging road to walk, especially when it's not done very often in our district or among many people that surround us.  Even with all of the opportunities out there to gain perspective on others' journey's, no two are exactly the same. 
Things finally got to a point where Chris and I had to seek out help we were not anticipating we would need to use.  There have been times I have sat back and really thought about whether I still believed this placement was the best one for him.  I have made my lists of the pros and cons, I have thought about what it would be like to "just give up on" inclusion and put him in a self contained special education class, and I still arrive at the same conclusion each time.  If I believe that Colin can be fully included in life, and have raised him that way, then I stand firm in my belief that he can be educated alongside his peers just the same.  In fact, I actually feel uncomfortable with the idea of giving up and feel that I would be making the wrong decision. I don't believe that a self contained setting is wrong for everyone; I believe that it is not the right setting for Colin. 

It makes me feel sad at times to know that many things are hard for Colin, right down to socializing with his peers.  He has to learn everything. Even though making and playing with friends, having a conversation, knowing how to behave, acquiring academic skills, physically doing things, writing, eating, etc. are hard for him, it does not mean he can't learn these things in the same place everyone else is learning.  The key here is finding the supports that he needs in order to be able to do this successfully.  This takes a lot of work from all sides of the table that sits down together to find what's best for him. 

Chris and I are going to continue to fight for and push for what we truly believe in for Colin.  We believe in him and know that anything is possible.  However, this will probably not come without many tears and struggles because that belief is not viewed the same by all. 

In preparing for an inclusive education for Colin, I read a book written by Sandra Assimotos McElwee that chronicled her son's journey from preschool to his high school graduation called Who's the Slow Learner.  It was such an insightful book as it detailed each year of her son Sean's education and the challenges that she faced.  It's interesting to me to find how many similarities our current journey contains compared to hers with a difference of at least 15 years in between when her son attended Kindergarten and Colin now.  I have enjoyed following her on facebook and through her website, Who's the Slow Learner.  Just today, as I was getting ready to attempt this post, she shared the following...

...and I couldn't have said it better myself. 

This is hard and emotional and more frustrating than I could ever have imagined.  However, we BELIEVE in Colin and so we will keep pushing and fighting for an educational setting that is same as the one in which his peers learn in and the one that we feel the benefits far outweigh any segregated setting.  It will just take some more planning and collaborating to find what he needs for that to happen successfully.  I know it can be done. 

Thursday, February 5, 2015

A (crazy) Day in the Life

Chris is working a little later tonight so earlier in the day when we were texting, he asked me if I would send him pictures throughout the evening of the kids since he wouldn't see them before they went to bed.  On the way to get them, I started thinking it might be funny to highlight what a day of ours looked like.  While today was unique for its own reasons, it's uniqueness is just what we experience on a daily basis.  So, without further ado, a (crazy) day in the life of our family...
I am the first one up every day by 5:30am and am typically followed by Kailey, Colin, Chris and then Cody at various times following.  I get everyone's lunches packed, kids all dressed (takes some creativity every day to get Colin and Kailey to cooperate), myself ready, notes filled out in Colin's notebook, breakfast on the table (with help from Chris who feeds Cody) and then am out the door by 7:20am.  Chris sent me this picture after I left... 

Chris then takes Colin and Kailey outside for the arrival of Colin's bus which comes right around 8am (this was a picture from December when I was still around putting Colin on the bus)...

Chris then takes Cody and Kailey to school and drops them off around 8:30/9am. 

Chris then heads to work and depending on the week, could have anywhere from 1 - 3 late nights a week due to basketball games (tonight is one of those nights).   
Colin took this picture at the game the other day of "Daddy working" (he's on the end of the table in the blue shirt).
I typically get to work by 7:45am and on my early days can leave by 3:10 and my late days leave by 3:45.  I work hard to get everything done while I am there so that I don't have to bring anything home most days. 
This picture is from "bring your child to work day" last year.
 The "crazy" part of my day begins once I get to the daycare to pick up the kids and am usually in a rush when I get there.  Mondays and Thursdays Colin has Karate, Tuesdays he has OT and feeding therapy, and Wednesdays Kailey has dance.  All 3 are on 3 different floors.  After figuring things out the first few days after going back to work, I ended up deciding on going to the top floor for Kailey first, then the main floor for Cody, and then we all head downstairs for Colin.  Since Colin and Kailey did not listen when I said "stop" at the end of the sidewalk, we had to backtrack and "try again" so that they would listen to me.  I got everyone in and buckled for the 1 mile drive to Karate. 

Today was an earlier Karate day than on Mondays which meant I had to feed Cody once we got there.  The ipad was not charged, so I had to keep Kailey from being a distraction to Colin (at one point they kissed each other through the glass).  Today was a challenging day because Colin was in the bigger room with more distractions so he was not as cooperative.  That stressed me out so I was mouthing "be a good listener" through the glass. 

Kailey helped to keep Cody entertained when he was done with his bottle. 

Colin decided to be a very stubborn and resistant little boy at the end of Karate (he kicked the book I was holding and the one I asked him to hold for me) so his teachers stepped in to help me discuss/reprimand/retry his behavior.  That took a solid 10 minutes and one of the teachers finally got him to cooperate.  I got everyone loaded back up in the car again with seatbelts for the 1 mile trip down to Target because there were a few things I needed to get today that couldn't wait. 

Despite multiple attempts telling Kailey to stop blowing rasberries/spitting at Colin, she continued. 

I get everyone unloaded from the car and holding onto Cody's carseat as we walk across the parking lot to the store.  When we get inside, there are no big carts with multiple seats left for the bigger kids so I'm stuck with a normal size cart and walking children (my worst nightmare alone).  Colin wants to help push and Kailey wants to ride on the back. 

As we walk past the card section, I remembered I had signed up for Valentine's stickers for Kailey's class so I stop to pick out a few.  I turn my back for a second and when I look back, Colin is pushing Kailey and Cody down the aisle. 

I run to catch them from going too far, steer them back to the stickers and then remembered I was getting low on diapers and wipes.  We headed over to the baby section, grab those items, and then I totally blanked on why I was there in the first place (what I actually needed).  I texted Chris and asked why I was there, got no response so head over to check out.  Of course, the lady in front of me decided to open a credit card so in the meantime, my kids were laying on the floor making faces in the mirror at the bottom of the next aisle. 

As we are walking to the car, Chris texts me back and reminded me why I actually went (dishwasher cleaner and coffee - we have none of either).  Load everyone back up in the car and start to head home. 

Before we get all strapped in, Colin and Kailey were fighting over who was sitting in each seat and then I had to discuss with Kailey how it's not nice to talk back to me (she wasn't putting her seat belt on and when I rose my voice and said lets go she said "take a chill pill mom, this is ridiculous"). 

Despite the fact the store is 5 minutes down the road, it took almost 15 minutes with all of the lights and traffic. 

For once, Colin and Kailey were making each other laugh hysterically and Cody fell asleep. 

At one point I looked back at a light and Kailey was saying to Colin "listen to me Colin! I need you to hold my hand because I have something important to tell you". 

 Once we got home we had to unload everyone and everything...

Despite the fact Cody was sound asleep, he woke up as soon as I hauled everything in (only one trip because I'm too stubborn to make numerous trips). 

I quickly made Colin and Kailey dinner since it was getting late but Colin had a mini tantrum because he didn't want the noodles I gave him. 

Meanwhile, Cody was screaming because despite the fact he had only finished his bottle an hour before, it was 5:30 which meant he was ready to eat right then. 

I had to cheer for Kailey who was eating fine to get Colin to sit at the table and eat the noodles. 


While Cody's bottle was warming up, I quickly unpacked all of the lunch boxes and sort of put things away. 

Once Cody was done, Colin and Kailey asked for their ice cream so I had to put Cody down (who was not happy about that). 

While Colin and Kailey were watching their show/finishing their ice cream, I quickly gave Cody a bath. 

By 6:30, Cody was ready to go to bed so I had to put a new sheet on the mattress (he wet it the night before) and got him to sleep (this is his classic "I'm tired" pose).   Thankfully, he was out within a few minutes. 

Meanwhile, Colin and Kailey needed a bath which went relatively well. 

They were cooperative when it was time to get out and were happy and cute (for a few moments). 

While I was getting them dried and dressed, Kailey asked me for a kiss and then a "nose kiss".  She then gave Colin one.  I thought it was so cute so I said "wait! do it again for a picture!". 

Colin leaned in for the kiss and then laughed and pushed Kailey into the tub.  She screamed and cried.

I told Colin that wasn't nice and then he cried. 

While they watched their last show, I tackled the day's dishes.

After the show it was teeth and potty time.  Typically we practice Colin's sight words at this time. 

Then I do separate books, prayers and songs with each of them. 

I got Colin settled and walked in to read Kailey her book...

She usually tries to bargain with me at this time but I stood my ground. 

After bedtime, I got myself settled with a glass of wine, the computer, and TV. 

However, an hour and a half after I left Kailey's room, she came walking in the living room....

She had 10 random things to tell me and then I finally got her to back to her room...
And then we do it all again tomorrow!