On advocating

         I believe that G-d gives you children according to how you, as a person needs to grow. When we began having children, I always felt like I would be a horrible advocate for them, and would often kick myself for not standing up a little stronger. Then we were blessed with Sruly. Children with special needs require everything that typical kids need, but very often on a greater level. G-d really knew what he was doing when he blessed us with Sruly and his special needs. Every parent with kids with special needs has to advocate for their children, and if they don't know how, well, hold on to G-d's hand and He will show you.

      When our son was in pre-school we were blessed to find an awesome program for him with such incredible teachers and therapists that I will forever be grateful for. These teachers, part of the public school program, taught, not only the children with special needs but also the parents. They took us by the hand and helped us through accepting the diagnosis, understanding sensory needs, conducted parent support groups, provided classes for parents on understanding and handling different behaviors, toileting, sensory, visual supports and much more. Despite everything I learned, our son learned even more. Than he graduated to kindergarten. We looked at just 2 public schools and applied for the one that happen to be closer to our home. I was a little unsure as I learned that they did not do ABA, among other things but everyone was so nice, and to be honest, I didn't know of any other options at the time. So he began kindergarten in his new public school.

      When our son was in pre-school he was there for just a few hours a day, then came home and worked with his TSS. In the beginning the most important thing he needed was to come out of his world and experience friendship and love. Little by little his TSS and BSC added some great programming as well as incorporated the skills he was learning in school and brought them home to create consistency and provide a more wholesome learning experience. After a couple of years our TSS began a family of her own and needed to leave the agency. We decided to switch agencies and were blessed, yet again, to find another great team. We felt that now he was ready for ABA and a more intensive program. There were many specific skills which his new TSS and BSC addressed and they also took a lot of data. When our son began a full day of kindergarten we noticed that he was forgetting skills and not developing at the pace that he was. The school was very focused on maintaining appropriate behavior, socialization and having Sruly spend as much time as possible in a typical classroom surrounded by typical kids. Being in a typical classroom around typical kids was not my goal. I wanted much more for him.

      Around that time we heard of a private school just a short distance from our house that was a school just for kids on the spectrum.  Around early November we took our first tour  and were so impressed by what we saw. The director was genuinely warm and gave us her time to give us a thorough tour and answer all of our questions. My last question to her on our way out was, "How difficult is it to get in?"

      "Which district are you in?" she asked.  I told her, and she answered, "They can be pretty difficult, you are going to have to put up a fight." With my husband, dear friends and G-d holding my hand, I did.

            As soon as we let Sruly's public school know why we wanted to switch him a a private school, they asked us to check out some other public schools first. One in particular stands out in my mind. It was a large school just for kids with special needs. As soon as we walked in I was overwhelmed by the size and how many students they had. It almost seemed more like a money making business than a school. They had two autism classrooms, one with the ABA approach. Someone gave us a tour and brought us into the classrooms. Immediately I did not like the teacher, for reasons I will not explain here. The staff to student ratio was poor. The classroom set up was cold and very institutionalized. I had a tall order. In addition to a classroom that provided the appropriate therapies I was also looking for an excess amount of visual supports and a classroom that felt very warm and homey. With kids on the spectrum, everything matters from the colors to the lighting. I was looking for warm colors, soft lighting and teachers and therapist who would compliment that environment. (And again, as well as the appropriate therapies.) This was certainly not the school. When we were done in the classrooms, our tour guide showed us the time out room, or the "cool down" room for kids who would tantrum so much and needed to be placed in there. The room was the size of a small walk in closet with nothing in it but wall to wall padding. The idea scared me. On our way out we got to see their sensory room, which was not impressive, and we got a quick hi and hello from the principal who was clearly busy trying to keep law and order in such a large and noisy facility.

     I was so grateful it was a sunny and beautiful day. As soon as we got outside I tried to let the warmth of the sun and the beautiful day embrace me, but I was still near tears at the thought of our son going to a school like this. I turned to look at our BSC who had come along and get her opinion as well. She took one look at me and said, "Don't worry, I am not impressed either. You don't have to send him here." The pubic school that our son was currently in needed to tell the private school that we chose, to come and observe our son and begin the necessary motions so he can attend.... but they (our son's current public school), were dragging their feet. We contacted an educational advocate who encouraged us to set a date for a meeting with the public school and their staff and explain why we want our son in the private school that we chose. The first meeting we had did not address the point. There was beating around the bush, and parent pleasing "data" collected to show us how he has been "improving" since we first mentioned our plans. We set a date for a second meeting.

      Before the second meeting took place, I spoke with Sruly's pre-school teacher. She told me she had gotten a phone call from one of the people in the public school's board of ED. The woman had asked her if she thought (since she had taught Sruly for a few years and knew him quite well), if he would do well in the private school that we were looking to send him. Sruly's teacher said yes. Next I was in contact with our Educational Advocate who went over our rights as a parent, what to expect if things went "south" at the next meeting (we had to be prepared to take our case to court), the data that we needed to bring and what we could expect from him as an Educational Advocate. He knew the laws well and that was his job. A few weeks before our second and final meeting I spoke with a dear friend. I needed to vent. I explained what was going on, to which she answered she'll see what she can do. I wasn't so sure but she explained her husband had a lot of connections. A few days later she told me her husband had spoken to someone on the public school's board of ED and briefly explained to her what we were trying to do. (I was beginning to think maybe we were crazy for entertaining this whole idea!) She answered that if this is what we felt would be the best choice for our son, that we need to be firm, stick to our guns and not let them push us around. We would get it. (She also asked to remain anonymous in fear of her job.) My friend told us to do one more thing. We needed to write a letter to our state representative. She gave me his e-mail address and I immediately began writing a letter.

      Here is a copy of the letter. If you are a parent or caregiver and would like to copy this or part of this letter to help advocate for your child, please feel free to do so, I ask that you just e-mail me first. Also, please note that I have kept the names of the schools anonymous to protect their privacy.

       We are parents of a 6 year old little boy with autism. Our son is currently in kindergarten and attends MP public school. He is part of the autistic support class which they offer there. MP does not offer an ABA (Applied Behavior Analysis)  program in their classroom, a type of therapy which is very popular and very effective in helping kids with autism learn and thrive. We have collected data throughout this past school year indicating that academically he is not thriving as he has in the past and is forgetting skills which he previously learned and mastered in an ABA environment. We have looked into three other schools (with the help of our son's Behavior Specialist), CP which is part of the public schools, and a private school at.... We found that CP does a "modified ABA" program, they do not follow the standard protocol, where as the private school follows it to the tee. There are other issues as well, such as CP does not push visual supports, which our son needs and has proven to thrive beautifully with, and the private school literally breaths visual supports and applies them at every opportunity possible. When our son is in an environment with a lot of visual supports his verbal and non verbal communication really thrives. The private school makes sure the kids with autism get a lot of sensory input throughout the day, whereas with CP it is secondary consideration. Again, sensory input throughout the day is so important in helping our son be calmer, more focused and ready to learn. The private school recognizes the importance of this which is why they are so diligent in providing it throughout the day and not just when kids seem to need it. The private school can really provide so much more for our son and they have an educational plan that our son can not only thrive in, but can truly reach his full potential with. The last issue for us is the distance of the schools from our home. CP will be about a 45 min bus ride and the private school is about a 25-30 min walk or about a 6 min car ride. The distance of CP will also be challenging for our son regarding potty training (Again, he is 6 going on 7 and we are actively working on this skill). The other challenge with the distance of CP is that I (mom) only drive locally as I am not a confident driver and can not merge in heavy traffic or on highways very well. I need to be able to visit his classroom often to be a part of his education and learn from his teachers so I can incorporate as many new skills and teaching techniques as possible at home. 

         The problem we are now facing is that the Public Schools are seemingly intent on keeping him in their system regardless of whether or not this is the absolute best choice for our son needs. We have spent hours interviewing the schools, their teachers and staff and have found that the private school will be able to guide and help our son fulfill his true potential in every way. We are asking for help in influencing the Public Schools to allow him to attend the private school which has been deemed most suitable for his educational needs by us and his team of therapists who work with him outside of the school. Thank you in advance.

Sincerely,

A and  B

p.s. We are scheduled to meet at his current public school this Mon, April 26th at 12:30 with a representative of the Public Schools, D.G. If you feel you can be of assistance to us in this matter please feel free to attend. 

     We later heard that yes, he read it and let the public school know that he read it and was watching our case. The day of the meeting came. We explained as diplomatically as possible (again), why we wanted a different school and why the other public school they chose for us was not an option. They began asking us to take a look at other public schools in the surrounding areas, all at least a 45-70 min bus ride for our son and again, not nearly as good as a school. (In total we had looked into 3 other schools.) I was beginning to doubt my ability to continue to keep it together. My stomach was in knots and I was getting close to yelling with all of the beating around the bush. The educational advocate was quiet, focused, listening and taking notes, which I knew meant he was confident with how things were going so far, but for my nerves I needed this whole thing to end.

      With a prayer to G-d to help me stay calm and not fall apart, I looked around the room and said said as calmly as I could, "We have a lawyer and are prepared to take this to Due Process."

      The representative from the public school said, "In all of my years on the job I have not had a case go to Due Process and as I am nearing retirement I am not about to let this be the first."

      The meeting was soon ended in the agreement that yes, our son could go to the private school. Of course we didn't know if there was still space and the director of the private school needed to first observe him and decide if the fit would be a good one. In the end, yes, they welcomed our son with open arms and have been incredible for both our son as well as our family. It has truly been a blessing.

      On our way out of the building I was going over the meeting in my head, thinking of how I could have said this and should have said that etc, when our Educational Advocate came over to say good bye.

      "By the way," he said, "you did a great job. I just sat there taking notes and didn't have to say anything. Usually I need to jump in and advocate for the parents. Best wishes and good luck."

I thank all of our friends, family and most of all my husband who stood by my side the whole way.