CPSE..you can’t fool me!!

While I noticed my daughter’s sensory issues from the day she was born, I decided to give it until her third birthday to see if she would “grow out of it” as most people suggested, even though I knew she wouldn’t. Plus, by that time, she was halfway thru her first year of school and I figured that it was more than enough time to see how her sensory issues played out in a structured, school setting. So a month after she turned three, I approached her teacher. I was hoping that I’d get the report that all was fine in school even though she was struggling at home. When I asked if there were any problems, the teacher started with, “Welllllll….”  She didn’t need to say anymore. I knew what I had to do. However, her school believed that her behaviors were the result of her being a “typical, spoiled only child who lacked discipline” and suggested that I seek out a counseling program targeted towards parenting. I had already known that going up against CPSE for a child who has sensory issues without any other developmental delay was going to be a battle. But without the support of her classroom teacher, I was really in over my head. So I decided to wait until the summer and, without any school report to back me up, go up against CPSE alone.

To say that my first meeting with CPSE was contentious would be an understatement. It was downright ugly. So much so that my social worker,who had attended thousands of these meetings, called me the next day and said that it was the “most brutal she ever witnessed.” I knew going in I was going to be denied any services but I also knew that I wasn’t leaving the meeting empty handed. And, just as I predicted, we were denied. We went back and forth for an hour. I pointed out that the results of her Sensory Profile showed that my daughter was profoundly deficient in ten of the thirteen sensory categories. If that didn’t qualify a child for services, then what did?  The chairperson asked me for a school report and I told her that I had to do the evaluation without one because her teachers labeled her “spoiled” and would ignore her when she had meltdowns in school. I told her that those kind of judgements were what my daughter was up against and that, in denying her services, district was setting her up for failure. The chairperson  then said that, because my daughter’s issues took place at home and not solely in school, it was not district’s responsibility to provide services for her. So I asked, “Do children with Autism or ADHD only have Autism or ADHD while they are  in school?”  She didn’t have an answer. At that point I simply told her that I did not agree with the committee’s recommendations and that I wasn’t leaving the room without OT. And I sat there, arms crossed, and stared at her until she finally surrendered. And while I knew that my daughter was going to need more than just an hour a week of OT to help her with her issues, I also knew that CPSE hadn’t seen the last of me. And they didn’t!

My second meeting took place four months later. It was halfway thru the 3 year old program in a new school and her issues continued..difficulties with transitions, regular meltdowns throughout the day, hyperactivity, distractibility, etc. So I called a meeting to ask for a formal behavioral assessment and, when district called to schedule the meeting, I found out that my favorite CPSE chairperson had retired and I would be meeting with someone new. The new chairperson called me to introduce himself and I could tell immediately he was much kinder than his predecessor. Yet, I still had to go into that meeting prepared for a fight. At the meeting the classroom teacher gave a very detailed report about how my daughter was not succeeding in the classroom and still, committee denied any formal behavioral observation. They instead suggested that an “informal behavior plan” be put in place and when I asked who should create such a plan, I was told that I should do it! This suggestion sparked a tirade, where I threw in things  like ” FBA’s, BIP’s, ABC data.” At a certain point, I saw the chairperson exchange a glance with the county representative. At that moment I knew I was getting what I wanted. So, a formal behavioral assessment was scheduled and we were to reconvene again to review the results.

My third and fourth meetings went much easier…the committee by then realizing that I knew their system and that I meant business. More importantly, the data collected from the classroom observation showed exactly what was there all along. The behaviors were not only present but seemed to be the result of a lack of emotional regulation. My daughter wasn’t acting this way because she was spoiled and wanted attention. She showed a legitimate inability to control her emotions which could be a result of sensory overload. She was granted a SEIT (a special ed teacher who would shadow her at school) for six weeks and a fourth meeting was scheduled to discuss her progress and come up with recommendations for the 2013-2014 school year. So, six weeks later, we met for the fourth and FINAL time. We sat down and the chairperson simply asked, “So what do you want to do with her?”  I told him I wanted the SEIT to stay for the remainder of the school year as my daughter was showing much progress with her help and that I wanted district to place her in an integrated, preschool class for September because it was clear that she needed more support than a general education setting could provide. Without a fight I was told that the committee agreed and, just like that, the battle was over. I shook the chairperson’s hand and I thanked him. I told him that I was grateful that he came along. He said that he appreciated the effort I put in for my child and was happy that,  in taking the appropriate steps, we were able to prove that services were warranted. In the end, the committee and I parted on a positive note.

In the past year since I began this journey with SPD, I have met so many parents that tell me that their child has the same issues that mine does. And they almost always tell me that they could not get services for their child. Some didn’t know that such a thing as SPD existed and were relieved to put a name to their experiences. Some went so far as to go up against their districts but were denied as I originally was when I first started this process. So I thought that this story was an important one to share because it has a very valuable lesson…No one is going to hand you something for free. You may have to fight to get there but, in the end, the data will speak for itself. You need to know exactly what you want before entering that meeting.  Most importantly, no one knows a child like a parent does. No one has a child’s best interests at heart like a parent does. And, as a parent seeking services for your child, you have the final say.

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