2016 Special Olympics NJ Polar Bear Plunge

Seven years ago this month, I stood on the beach in Seaside Heights while my friend Zach plunged for the very first time after raising money for Special Olympics NJ. I was pregnant with Colin but did not yet know how my little boy was going to impact our life because of the something "extra" he had. I can remember joking around with Zach how crazy he was for plunging in the ocean in February because of how cold it was (I mean, look how bundled up I am in this picture!).  

 

Me with CAT Crew Team Captain Jorie

I sit here tonight now, after CAT Crew's 7th Special Olympics NJ Polar Bear Plunge, and I can't believe that we have raised exactly $289,001 (with some more slowly rolling in). I can't even begin to describe how thankful I am for another successful year with 48 team members raising just over $42,500. This year was a beautiful day in the 50s with the water temperature in the 30s, and a record year with 6,000 people raising over $1.7 million dollars. This money directly benefits the thousands of Special Olympic athletes in NJ.

To all CAT Crew team members and supporters, thank you.

 

 

 

 

 

 



When Progress Doesn't Equal Progress



"I envision a world where any question of school inclusion is answered with a resounding OF COURSE! and the details of that inclusion are joyfully, creatively, and skillfully planned and carried out in direct collaboration with the person receiving support." - Dr. Julie Causton

 



 

Ironically, the above quote showed up in my inbox today in reference to the New Jersey Coalition for Inclusive Education's summer inclusion conference. Dr. Julie Causton is an expert in inclusion who we heard speak last year at the conference and has written many valuable resources for everyone involved in supporting a child with a disability in an inclusive setting. Today is also the day we showed up at an IEP meeting and sat and listened for an hour about how much progress Colin has made and how well he is doing. He is doing far better in many areas than he was doing at the beginning of the year. We have Colin's teachers and therapists in part to thank for that. There were challenges discussed; challenges that have carried through his entire life like difficulties when socializing, some difficulty with transitions, and academically, how he is at a lower level in both literacy and math compared to his typical peers. However, most of what was discussed was Colin's progress, and that made Chris and I feel so proud.

After listening to this progress, the case manager then started to discuss Colin's placement for next year. Even though he had made progress, it wasn't "at the same level" as his typical peers. Even though he made progress, his curriculum was modified too much. Even though he made progress, he repeated Kindergarten. Even though he's made progress, it's not good enough in their eyes. After an hour of discussing how well Colin is doing this year the bomb dropped; another self contained LLD placement for first grade.

When is it good enough? When will Colin get to stop having to prove himself and just get to be in a general education setting with his peers without having to prove that he can be there? When will Colin's progress be something to celebrate? When will Chris and I get to stop fighting for a basic RIGHT of Colin's and ALL students with a disability? This district has missed the boat somewhere along the line. Even though Colin has made progress he is being discriminated against because he comes with a diagnosis of Down Syndrome and it has been made clear to us that in this district, students like Colin have a specific place; a place that is separate and segregated from their non-disabled peers.

 

Here's the thing, the Individuals with Disabilities Act (IDEA) is a federal law that supports the education of students with disabilities in the Least Restrictive Environment.

 

Title I/B/612/a/5 - In general, to the maximum extent appropriate, children with disabilities...are educated with children who are not disabled, and special classes, separate schooling, or other removal of children with disabilities from the regular education environment occurs only when the nature or severity of the disability of a child is such that education in regular classes with the use of supplementary aids and services CANNOT BE ACHIEVED SATISFACTORLY.

 

Part 300.116 - A child with  disability is not removed from education in age-appropriate regular classrooms SOLELY because of needed modifications in the general education curriculum.

 

In addition, students with disabilities do not need to be removed from a general education setting simply because they are not on grade level. That is why they have an individualized education plan.

 

 

Chris and I have been left, once again, to fight for what is RIGHT for Colin which is physically, emotionally and financially draining.





We Are So Proud of You Colin!



When Colin was born, Chris and I were given developmental charts listing milestones that typical kids would reach and what the timelines were compared to children with Down Syndrome. Because of that, we felt like we were always waiting for Colin to accomplish certain skills like stacking blocks, saying words, stringing beads, sitting up, crawling, walking, talking, etc.  For him, some things happened more easily and/or quickly while other things took a really long time for him to accomplish. We were always practicing and working with him because we wanted to make sure we were doing everything we could for Colin with endless amounts of tummy time, exercises, etc.

 

 

Chris and I had to learn a very important lesson early on in those days that we were just going to have slow down to Colin's pace and be patient with him through every step of each milestone we were trying to help him accomplish. There were many tears shed as we felt every struggle of Colin's but even more through all of his successes. We learned to celebrate everything no matter how big or small because of how much work went into each thing he did. 

 

When Colin started school, the same lessons applied but to different kinds of milestones and learning goals. Through the last few years, there have been things he has picked up more quickly but just like when he was younger, there are many things that take him longer to learn and understand. While we still have to remind ourselves that he will get there, it is often challenging in the moment through the struggles of doing homework and practicing skills that come so much more easily to other kids. In addition, we feel like we have some added stress of always having something to prove in order to keep his placement in a general education setting that we so strongly believe in. With each "off" day behavior wise, each report card and IEP goals progress report, we fall off track a little bit from what we have already spent over 6 years learning. There have been so many improvements this year solely from the open mindedness of the people working with him but in all honesty, the road ahead feels daunting at times and that does NOT have anything to do with Colin himself.

 



 



The other night I was working with Colin doing his homework and I let my own frustrations and fears get the best of me through his struggles in practicing a particular skill. At the end of the day, he's tired and shutting down yet I still try to push through and practice sight words, phonics, math concepts, counting, etc. because I worry. I realized I needed to take a step back for a minute and praise him for the progress he has made. His progress is not as fast, not as big or noticeable at times but it's Colin's progress and I can't let myself, or anyone, lose sight of that. I am so proud of Colin for how far he has come. He has been so motivated by these leveled reading books lately and asks to go through them independently. So tonight, I'm sharing my little guy's newest accomplishment....reading. 

 

(did you pick up on what he said in that video?? I have NO IDEA where he got that from!)

 

 

Happy 40th Birthday Chris!!

Today we celebrated (part 1) 40 years of Chris, the guy we love with all of our hearts! Happy birthday to one very special husband and daddy! We love you!

 

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!

"Thanksmas"

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... 



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!