Tuesday, May 27, 2014

An Educational Battle Worth Fighting

I've now sat here for quite a bit of time staring at a blinking cursor trying to decide how best to formulate the words that have been swirling around in my head today.  Today is when my walls broke and I cried the tears that haven't been there until now.  Today is one of those days when I ask why we have to fight so hard for our child to be a part of a community in which he belongs. 

On May 15th, I posted about how we chose to place Colin in the least restrictive environment which for him, we determined to be an inclusive setting in which an in class support teacher came in for part of the day during Math and Literacy.  It had been discussed in meetings in the past that Colin would benefit from inclusive opportunities, but the district has currently been unable to provide that because of the fact that the Kindergarteners in special education are currently segregated in a building without their typical peers.  The recommendation from the district was a more restrictive environment in an LLD self-contained class and we were told that there would be inclusive opportunities next year (no guarantee to that yet).  Even if this was an option, we have felt all along that he should be included to the fullest extent possible and only use the special education classroom as a resource option.  After our choice was made, we asked for a paraprofessional to be in the classroom as 1:3, 4, or even 5 for the times of the day in which the special education teacher would not be in there.  Given the fact that this is an in-class support class with other children with IEPs, we felt this would be beneficial. 

We were told from the case manager that the decision about a paraprofessional would have to come from the Director of Special Services.  We chose not to sign to consent to the implementation of the IEP until we knew what kind of decision had been made regarding the paraprofessional.  Since the 15 days we have to sign is going to be up on Friday, I contacted the case manager today via email asking if a decision had been made.  She informed me we would not be granted a paraprofessional for Colin.  When I asked why she said to me "if you feel he is ready for inclusion then he doesn't need one".  Wow. Ok. 

That's not what immediately got me upset.  Initially, this just felt like another bump in the road that I would have to sort out.  So, in the meantime, I pulled up the law that I have read a bazillion times now. 

6A 14-4.2 Placement in the least restrictive environment

(a) Students with disabilities shall be educated in the least restrictive environment. Each
district board of education shall ensure that:

1. To the maximum extent appropriate, a student with a disability is educated with
children who are not disabled;

2. Special classes, separate schooling or other removal of a student with a disability
from the student's general education class occurs only when the nature or severity
of the educational disability is such that education in the student's general
education class with the use of appropriate supplementary aids and services
cannot be achieved satisfactorily;

In addition,

6A 14-4.3 Program Options

(a) All students shall be considered for placement in the general education class with
supplementary aids and services including, but not limited to, the following
1. Curricular or instructional modifications or specialized instructional strategies;
2. Assistive technology devices and services as defined in N.J.A.C. 6A:14-1.3;

3. Teacher aides;
4. Related services;
5. Integrated therapies;
6. Consultation services; and
7. In-class resource programs.

In reading further:

(b) If it is determined that a student with a disability cannot remain in the general education
setting with supplementary aids and services for all or a portion of the school day, a full
continuum of alternative placements as set forth below shall be available to meet the
needs of the student. Alternative educational program options include placement in the
1. Single subject resource programs outside the general education class;

2. A special class program in the student's local school district;

Hmmm, ok. 

I called the case manager back to ask a few questions regarding some minor issues like busing, summer school and to confirm what his school diagnosis was so that I could contact the Director of Special Services to discuss why he wasn't entitled to the same rights the law outlines for him. 

I wasn't clear on whether Colin would ride the "regular" bus to school next year or if he would continue to have door to door service.  She suggested maybe we start with door to door service since this was going to be a "big change" for Colin next year with a "LOT of challenges" so we should try and make a smooth transition for him. 

Right! Exactly!  From there the discussion ensued because I suggested that as the same reason why it would be beneficial for Colin to have another support staff in the classroom to at least start the year out.  Without getting into too many details, key phrases were dropped on me like "this is what you chose", "you got what you wanted", "everyone else thinks this isn't where he belongs", "this is going to be really hard for him", and again, "if you think he's ready for inclusion, then he doesn't need it". 


I'll be honest;  Chris and I pride ourselves on the positive relationship we have established with Colin's support staff.  We know that they have worked hard and are a lot of the reason why Colin has come as far as he has.  But I will say, I have never felt as hurt and heartbroken as I have today after what this case manager said to me because I feel that the message that came across was one that is setting Colin up to fail because "this is what we chose".  Where oh where in that law that I posted does it say that the least restrictive environment is one that if chosen means he "doesn't need support"? 

Let me point out that Chris and I clearly understand the fact Colin has an intellectual disability which presents many academic challenges for him.  We have spent many, many months reading up on the law, reading scientific studies, taken into account the opinions of other parents, teachers, and support service staff and made a decision that supported all of the many benefits to an inclusive setting (for Colin AND for the students without disabilities). 

Do you know WHY we made this decision?  We have refused to let a diagnosis define Colin and who he is.  We have underestimated Colin before and he has proven us wrong.  We have refused to let things remain status quo for him and we continue to push him and set the bar high.  Does ANYONE (Chris and myself included) KNOW what Colin is capable of right now?  Does anyone truly know how next year will go?  You can do every test in the book that you choose, but you never know how much can change with time.  The same challenges he faces now might mean nothing in Kindergarten but new challenges and difficulties can find themselves at the forefront.  Do these challenges mean that he is not entitled?  Why does he have to earn his way into general education?  As a teacher myself, I did not walk into a job expecting that every student was going to be the same.  I have had to adapt and change the way I do things EACH YEAR because of the unique differences all students bring.  Maybe in some ways Colin's difficulties might be MORE challenging but that doesn't exclude him from learning from and modeling after his typical peers. 

Do you know how much Colin has learned because of Kailey? Do you know how much Colin has learned by spending the first 5 YEARS of his life in a general education day care setting?  Do you know how well Colin has done in his Sunday School class with his typical peers?  What about the social settings we have and continue to place him in?  Colin is a smart little boy.  He knows what is expected of him yet pushes the boundaries just like other kids his age.  And you know what?  He DOES need help sometimes. 

Today, I am going to let myself cry and feel sad over the clear differences that still exist. 

Tomorrow, however, I will pick up the pieces and take the next step for Colin because I know he is capable if just given the opportunity. 

Monday, May 26, 2014

Memorial Day Weekend 2014

It's been a busy weekend around here as our unofficial start to summer began.  Unfortunately, Chris worked half of it but we still had a lot of fun with friends and family.  The weather ended up making it feel as though summer has already begun and is making us feel a little bit itchy for the real part of summer to get here! 
Colin, Kailey and I started the weekend off with some ice cream at the ice cream store!  Colin had been missing Daddy so much he sort of adopted a different Daddy while we were there and snuggled right in with him.  It was a little bit awkward for me, but the family though it was totally cute.  

On Saturday, we met up with our friend Charlee and her Mommy and Daddy at the boardwalk to catch a few rides together.  We had so much fun!

Sunday was beautiful all day long and we first hit up the beach where Colin had no problem jumping right in and riding the waves even though the water is still in the low 60s. 

Later that day we had a BBQ with our friend Becker, his Mommy and Daddy and some family.  Unfortunately, Daddy's work day ran longer than it was supposed to so he missed dinner with us. 

Today was another BEAUTIFUL day and it felt just like old times when our friend Mer came to visit us in her lifeguard truck on the beach.  Colin got his first ride of the summer!

It was a fun but exhausting weekend!  Looking forward to many more like it!

We did not forget, however, WHY we were able to celebrate with our family this weekend...we are extremely grateful to our Grammy and Poppy and all of the other veterans who have made many sacrifices so that we could enjoy our time together.  THANK YOU!

Monday, May 19, 2014

The Best of Birthdays

Today was a really good day spent with my family celebrating my 33rd birthday (although I TECHNICALLY don't turn 33 until midnight).  What makes these birthdays fun is not so much the excitement for myself but rather, the excitement that Colin and Kailey have in celebrating it FOR me.  

Even better, Colin was able to sing me an entire version of Happy Birthday very clearly and with lots of love.  THAT makes for a really good birthday.

To celebrate, we walked down to the restaurant on the river by our house and had dinner out on the patio (which did get interrupted by some rain late in the dinner).  The restaurant has a "Family Funday Monday" with a DJ playing music in one of the rooms and the kids just joined right in.  Our jaws dropped to see Colin and Kailey do THIS without any bit of prompting...

Sunday, May 18, 2014

"Summer" Fun

Today we decided to break out some of our "summer" toys even though it wasn't AS warm as it could have been.  I had two little tots requesting some water play and I wasn't about to turn them down (clothes and all!).  

By the time they were done, they were shaking so hard from being cold we had to run inside for a warm bath!  Looking forward to much warmer weather ahead!

And THIS is the kind of attitude we are dealing with when it comes to Kailey.  And by the way, I NEVER should have posted so soon about her being potty trained.  Oy vey....she is tough to handle!

Thursday, May 15, 2014

The Road Less Traveled

Today we had Colin's final IEP meeting with our team to determine his placement for next year.  After many months of doing our own research, listening to the progress updates about Colin, hearing/touring our options, and discussing the recommendation by his team, Chris and I ultimately decided to place Colin in an inclusive setting with an in-class support teacher for math and literacy.  For us, this decision was not taken lightly and even now there are some fears of the unknown in what the future will bring for Colin.  However, we feel confident that we have made the best decision.  

We have weighed all of the options and while we know there are clear positives to a special education classroom with smaller class sizes and more individualized attention, there are also many benefits to being in a classroom with his typical peers and having positive peer models.  We DON'T know how Colin will do but we feel that it is something we need to try and give him the chance to show us what he is capable of. 

This has been a very emotional journey for us and we know it is really only just beginning.  When you pick a route that is not the "common" way, there are anxieties to how things will work and how he will do but what we DO know is that we will continue to support and push Colin to make sure he is as successful as he can be.  Worst case scenario?  We reassess and figure out what we need to do as little challenges may pop up. 

We are about to start a new adventure with Colin in the fall and look forward to seeing all of the ways he will shine.  We are so grateful for the foundations that his "team" at school have built for him that allows us to confidently make this decision to take this road.  We will continue to take one step at a time and make sure we do all that we can for Colin to be successful. 

Monday, May 12, 2014

Take Me out to the Ballgame!

We had a really great opportunity on Friday night thanks to my Dad and his company, New Jersey Manufacturer's Insurance Company, to attend a Trenton Thunder baseball game as part of their annual fundraiser for the Special Olympics of NJ.  NJM has become a big sponsor for the Special Olympics through the years, including for the upcoming National Games. 
On Friday night, the company sold tickets to attend the game as a group for employees and family members where they would then donate the money raised to the Special Olympics.  Because my Dad has been one of the top fundraisers for our Polar Bear Plunge team CAT Crew for the Special Olympics year after year (and one of the overall top fundraisers for the event) and because he has a grandson who directly benefits from the Special Olympics (whose photo is actually featured on some NJM awards they've received), his company invited my dad and his family to be a part of the check presentation on the field prior to the game actually starting.  We were honored to be a part of such a prestigious group of people on the field presenting a donation to the SONJ. 
My dad is over my right shoulder along with the President of SONJ, his son (holding the check) and the CEO of NJM (with other company employees). 
 Another benefit of the evening, was the fact that Colin and Kailey were able to throw out first pitches prior to the game starting. 

What was even more fun for Chris was that he used to work for the Trenton Thunder years ago and coincidentally they were celebrating their 20th anniversary where Chris was able to run into some of the staff members he used to work with during that time.  
As always, we were thankful to be awarded such a great opportunity thanks to Colin and his involvement with the Special Olympics, in addition to the hard work of my dad, his company,  and people like him who raise money for the SONJ.  These funds directly benefit Colin as he participates in many programs the Special Olympics have to offer for him. 


Thanks Dad, NJM and the SONJ for another great event!  Also, a special thanks to our friend, Dave Schofield for some great pictures from the night!