This is the experience we're having with Cason. Cason has been dealt such a crappy hand. He was born to a mother who had such a troubled past that she didn't have to tools to care for him appropriately and keep him safe. I don't believe that she is a bad person, I don't believe that she sought out harm to Cason, she just was ALSO dealt a really crappy hand in life. They were homeless at times, they jumped from home to home and then he was hurt...hurt in a way that in an INSTANT changed everything about his life forever. He almost died...it was thought that was going to be the likely outcome, but he didn't. He fought and lived. He was removed from everything he knew...good or bad, it was what he knew. He was in the hospital and then moved in with a family he had never met, forced to endure hours upon hours of therapy. He was an innocent child who didn't bring any of this on himself. He suffered for so long. He was then moved again, to our home where he continued to endure hours upon hours of therapy and doctor appointments each week, he was forced to wear a helmet 23 hours a day that was sweaty and compressed his skull to help reshape his head. He had to sleep in the helmet, it was uncomfortable for him. We vowed that we would spend the rest of our lives doing anything and everything we could to make things in his life as good as we could for him...so he could grow and progress to his maximum potential. He deserves nothing less. Period.
Throughout the first year when Cason was with us, we changed several of his doctors and therapists to better suit Cason's needs. There were never any questions asked...these medical professionals who had years of training and experience, many of who contributed to saving Cason's life RESPECTED OUR OPINION AND WISHES as his parents. They never made us feel like they knew better than us what he needed. We educated ourselves and made decisions according to all of the facts, what we knew as his parents and all of the research we did. We don't take lightly his medical care and therapy he receives...we don't take any care he receives from others lightly. We are very particular about his environment and that his needs are being met in the healthiest way possible to help him progress in all areas. It is our job as his parents and his advocates and we want nothing other than the best for him.
So we feel the exact same way about his education. We know Cason better than anyone else, we know what triggers his sensory issues, we know what environments are comfortable to him and what environments will set him off. We know that if he is distracted or uncomfortable, there is no way he can learn and grow to his maximum potential. So the classroom environment was very important to us. We had specific types of instruction that we wanted him to receive every day and we were invited to do a tour and visit the classrooms at Children's Village West where he would be attending preschool. To turn over care of him when I've had him by my side all day every day since the day he came to live with us was going to be extremely difficult. Not only was I personally going to have to adjust and let go a little, but in order to do so willingly, Sean and I wanted to make sure that we were comfortable with the place where he would be going, where he would be spending his days.
Our visit revealed a lot to us. It was clear where he was comfortable, where he let us put him down and he explored. It was so obvious where he was uncomfortable and distracted, where he was nervous. It was also an obvious decision as to where WE were comfortable, the environment that we knew we would not be afraid to put him in each day, the environment that provided a very healthy learning environment for Cason's individualized needs. We took several factors into consideration...the factors that would affect Cason's sensory issues, the size of the classroom, the other children in the classroom, the environment where Cason would be receiving his one on one instruction and Cason's demeanor in each room. We wanted to be educated on what was out there and as it was always stressed in his IEP meetings, we are an equal part of the team so we felt it was important to be fully informed not only for our peace of mind, but in order to help make the best decisions on Cason's behalf as a PART OF THE TEAM.
After that visit, we left the school feeling pretty good. We spoke with the principal that it seemed clear to all of us that Cason would fit best in a certain room. The principal stated that she could tell as well and we left looking forward to Cason starting school...for the first time ever. We had been nervous for months about it prior to this.
At Cason's eligibility meeting it was again stressed how we are an important part of the team. We were joined by many therapists and Cason's teacher, each who had worked with Cason weekly for the last couple of years. Each of these people being in the room brought me comfort...they KNOW Cason, we know them, trust them and know that they only want what's best for Cason...that he isn't just a number to them. There were a few people in the room from the district whom we did not know as well as the principal, nurse and a special education teacher. The meeting was formal and uncomfortable. It felt almost like a courtroom setting...so strange. Everyone had their faces buried in paperwork that detailed Cason's history. One of Cason's teachers, when his vision was brought up just casually said something about how the only accommodations necessary in regard to his vision would be that he has adequate lighting. Well obviously...wouldn't that be the case for all classrooms to have adequate lighting? I didn't really think much of it. Apparently the district took that statement by the horns and went running.
Following the meeting, every person who has worked with Cason and KNOWS Cason was excused from the room so that the others could "make a decision for classroom placement". We were not a part of the team in THAT decision. Rather, the principal asked if she could take us to another room that she didn't originally invite us to visit previously because she felt like it was brighter. We agreed to visit the room with her and the minute we walked in, we knew this was not a great environment for Cason. The room is in the basement part of the school and is very large with not a single window and TONS of fluorescent lighting. That lighting is not good for Cason with his sensory issues...a softer, natural light needs to be present. In an environment like that, Cason's self stimulation behaviors are enhanced and he will bang his head, spin around, fling his head back and forth, hit himself, etc.. Furthermore, the so called "classroom" where Cason would be receiving his intensive one on one instruction was in the stairway...with a major echo. Cason HATES echoes. He can't be in a hotel swimming pool area because of the echo, he cries, his senses go crazy and he certainly isn't able to focus. We were confused as to why the principal felt this classroom would meet Cason's needs. We explained that the light in that room was not good for him and we still knew that the other classroom was the best fit for him. Her response, "okay, well we'll just get some more lamps in there then!" Again, we left feeling like we were all on the same page and excited for Cason to start preschool.
An hour or so later, after the ever so private placement meeting was complete, the principal called me to tell me that despite our concerns, the district knows that the basement classroom was the best fit for Cason. I expressed that this was not going to work for him, that WE know Cason best and only are looking out for him, that we aren't trying to cause a problem, but we did not want him in that classroom. She kept bringing up the light and how it's brighter in there. I asked if she would like me to have Cason's teacher for the visually impaired contact her to discuss this matter as I knew he agreed with US on this topic. She agreed and said she would get back to me after talking with him.
10 days passed and she never contacted me. Meanwhile, Cason's 3rd birthday had come and gone and Cason was not receiving his services that he typically received weekly and he hadn't started school. We waited long enough...I called the principal and was given her voicemail. I asked when he would be starting, asked her to call me and discussed how we wanted to get the ball rolling to get him in school. I mentioned again our concerns with the basement classroom and went over why the environment in the other classroom was a very healthy one for Cason with his individual needs. Another week and a half went by after that with no return call. Finally, one of Cason's therapists mentioned to someone on the team that I had heard nothing and was getting frustrated. I then received a call, NOT from the principal, but an AEA staff person...19 days AFTER the eligibility meeting and 2 weeks after Cason had turned 3 to tell us that the district did not change their mind and Cason would be placed in the basement classroom. I said that this would be a deal breaker and that we would not put him in that classroom. I asked again why they selected that classroom and I was told again, it was because of the lighting. I mentioned yet again that this was one of the reasons we DID NOT want him placed in that class...that lighting would increase Cason's sensory behaviors. Then I asked how much say I do have, I expressed my disappointment in the system and having been told that we were an equal part of the team, but they were not taking our concerns into consideration. I was told that placement is the districts decision and we don't get to have a say in that...only a say in programming. I was then told that they are not denying Cason an education because they have given him this placement, but that if we decide to not send him, that is our choice. And I am hearing all of this from the AEA employee and still have never heard a word from ANYONE from the district. This employee then suggested that we put him in this basement classroom right away and then we can meet in 2 weeks to go over our classroom placement concerns and see how things are going. She apologized that the first time the district special education representative could attend the meeting would not be for 2 weeks. We explained that there was no way we would be putting him in that classroom for a single day. Period.
So as of now, Cason will not be going to school. We are so disappointed in the Davenport School District's special education program. We will not quit fighting this. As Cason's parents and advocates and the people who know him BEST, we will make SURE he receives the educational environment that is best for him to help him grow and learn to his maximum potential. We will accept nothing less for this child. He deserves an education and with his individual needs, the environment he is placed in is imperative to his ability to focus and learn. I believe that to the district, he is a number. I believe that to the principal of Children's Village West, he is a number. I have been disappointed with the professionalism and choices of Children's Village West's principal since the day we met. I will not keep my concerns quiet when it comes to the well being of my children and children that follow them. Unfortunately, due to the boys' needs, the only schools they are able to attend that can accommodate their needs are schools that this principal oversees. We have made it clear that if there were another option for us, we would be there. Unfortunately, there is not. I will fight for my boys until they get what they deserve!