Wednesday, February 24, 2016

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.




Wednesday, February 17, 2016

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.

Tuesday, February 9, 2016

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!)

Tuesday, February 2, 2016

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!