"Courage is not the absence of fear, but rather the judgement that something else is more important than fear." ~ Ambrose Redmoon ~
I have attended CSE meetings since my son was in special education pre-school. It's always a nerve racking experience no matter how much preparation I do. My stress level is way up but I try to use it to my advantage. As always, I'm walking into a meeting heavily outnumbered. When I attended the Education in Advocacy workshop to become a lay advocate, one thing mentioned is that there is usually one person on the school side who is a "friend" to your concern. One person who sees not only with clarity, the challenges your child has but able to help identify with you possible solutions. For me, it is not that easy.
The situation I have in this district is extremely challenging. Although every parent who has a child with special needs must make it their personal mission to understand the laws to the best of their ability, it might not be enough. Why is this? As a parent, it's extremely challenging to separate the emotional investment we have in our children. Unless the emotions are appropriately channeled, we're at risk of "losing it" at meetings. Our judgement is at risk of being clouded by our emotions. I try to offset this "disadvantage" by channeling the energy into educating myself and by aligning myself with as many other parents and professionals on the side of advocating for children. It's a process. Although I know a lot more now, have built up my confidence by educating myself, I need to monitor my emotions. I force my logical and rational mind to drive at the meetings and keep things in perspective. It is a challenge.
This district has a agenda not to give one more resource without a fight. It seems not to matter that their opposition to the obvious is hindering on breaking the law. They appear to have little concern for it. I know what I'm up against and although I have tried in numerous ways to work out my differences in a business like manner, it is not good enough. As a result, I've made an appropriate attempt of leveling the playing field by arming myself with a special education advocate. A person who is supposed to be on the side of children, who has a great amount of experience reciting the law and advocating for families.
What do you do when the advocate you're depending on, flips to the side of the district? This is what happened to me. The advocate I recruited read all the compelling information I have in defense of changing my son's classification from OHI to Autism. In addition, the advocate was in agreement of seeking out of district referrals. I thought I had someone who I could count on to help me navigate the shark infested district. I want to say here, an out of district placement wouldn't be necessary if this district would provide the resources my child needs. Further, it's a challenge where I live to find an appropriate placement for my child because he is high functioning. Many of the schools in the surrounding area work with children who's disability tend to be moderate - severe.
At the insistence of the district, my special education advocate was asked to observe my son in his classroom. I was opposed to this but want to work with the district for my son's sake. Unfortunately, often when adults are disputing over "things" where kids are involved, children tend to be negatively impacted the most. With misgivings, I gave my "blessing" to the advocate with the promise from her that she'll remain objective. Further, the advocate assured me her opinion wouldn't change; that the large file and documentation I've amassed substantiates the need for changes in classification and placement.
When you're getting ready to have company,what do most people do? I know for me, I like things to be neat and tidy. I feel good when my home is presentable. It creates a welcoming environment for my guests so that they feel more comfortable. Well, I can't imagine that any classroom teacher wouldn't want to present their environment in the best possible light. That everything will be neatly arranged and prepared so as to demonstrate a positive and well managed classroom. It's on the same level of bringing out your best china for your guests. In fact, my advocate said to me that she's aware there is a tendency to "stage" in preparation for visits. And, she is aware of this tactic and will not be phased by it because after all, we have compelling documentation.
As I stated above, my advocate flipped. After spending one whole hour in the classroom, and seeing my son getting along so nicely, she decided he is appropriately placed. I want you to know, the visit was set for 10:00 AM and it just so happens my child is at his best in the mornings. The lessons/information presented during the visit where about things my son was very comfortable with. In fact, it was material that my son worked on previously as demonstrated through his homework assignments. How do I know this? The advocate shared with me the things that were being discussed. My advocate also told me how impressed she was with the book my son read to her. However, when I asked her what grade/reading level the book was, she never answered my question. I never found out what questions she asked the teachers about my child regarding tools used to help him learn, for instance. Or, what areas are the most challenging for him and what ideas the teacher has for addressing it. I never found out any of it. In fact, I got the impression that all she did was sit, look and listen but not press for more relevant information.
Why am I telling you all of this? After talking with my advocate, expressing my disappointment in her assessment, she assured me once again that when we go into the CSE meeting, the focus will be on classification change and necessary tools to meet my son's needs. For instance, my son is behind 12 - 18 months on many academics including math. We need to have a resource in place to help bring him up. We agreed together, daily math tutoring is necessary. It's clear my son's needs intensive remedial work in reading, writing and math - the three big ones. If out of district placement is off the table, minimally, Aren's needs the additional resources in the present setting.
I had the CSE meeting on Thursday at 2:00 PM. At around 9:00 AM, the secretary from my advocates office called to tell us, she was sick and not able to attend the meeting. My advocate has my email address, in fact, we have corresponded often through it. Do you think I received an email from my advocate with an apology for leaving me high and dry at what was considered to be a very important meeting? Well, as I'm sure you have guessed, the resounding answer is a big, fat, "no". In fact, I don't expect to hear from her again.
What I will tell you is that "yes", I went to the meeting with my husband and two children. And, I stiffened my back, held my head high and indicated to the CSE chair, my advocate called in sick. I remained undaunted because my son needs strong people to advocate for him. I stated my case for my son. I started by asking for the classification change from OHI to Autism. It was refused because, a more suitable classification from the district's point of view is MR and that is based solely on an IQ score. So, I guess I should feel comfortable with either OHI or MR. Let me just say, that neither classification is suitable. Those classifications do not speak to my son's disability, challenges and strengths. My son is on the spectrum and his disability is probably best described as pervasive because he is splintered in his abilities. I have in my possession documentation from several professionals that offer opinion that points in the same direction. The school psychologist who was the first person to advocate for the MR change in June, argues that my son doesn't demonstrate the social challenges associated with many children who have autism. I'm so sorry to disappoint the psychologist that my son doesn't present in a stereotypical way. And, it's troubling that I, as a lay parent in regards to Aren's disability, is required to tell her to do more research in autism and that one size doesn't fit all. That autism manifests differently and by varying degrees in children who have the diagnosis. And, her assessment and gross misinformation doesn't dismiss the fact that my son, indeed presents with challenges associated with children on the spectrum.
The district doesn't want to change the classification to autism because it would require them to provide more resources. At any rate, by law, they are required to educate our children at the same level as non-disabled children. However, if you were to ask Aren's special education teacher, she would tell you classification doesn't guarantee additional services. Well, she can hold on to that argument because I have one that's better:
Prepare Children for Employment, Independent Living – and Further Education
In “Purposes” of IDEA 2004 (Section 1400(d)), Congress describes what they intend the law to accomplish. In IDEA 2004, Congress added “further education” as a purpose of the law:
“The purposes of this title are to ensure that all children with disabilities have available to them a free appropriate public education that emphasizes special education and related services designed to meet their unique needs and prepare them for further education, employment and independent living.” (Section 1400(d)(1)(A))
When Congress added “further education” to the Purposes of IDEA 2004, they established a new outcome for special education, an outcome that had never been identified before.
When you read in “Findings” that disabled children should be given the opportunity to meet the “challenging expectations that have been established for all children” and “improve academic achievement and functional performance… to the maximum extent possible” (Section 1400(c)(5)(E)) and you read that one Purpose of the law is to prepare children for “further education,” you are looking at a new legal standard for a free appropriate public education. ~ Wrights Law ~
Standoff defined: The act of repulsing or repelling an attack; a successful defensive stand.
First of all if your advocate is not a psychologist or social worker there is no way she would be able to evaluate what disability your child has or how truly effective he is int hat classroom.How he functions in a classroom for one hour also dos not indicate what is happening the rest of the day. In fact it is not allowable under law. If your child has a diagnosed disability it has to come from the psychiatrist not the school. This is NY state law. Also there is no MR designation any longer. It is intellectually disabled. Only if your child's IQ is below 70 is that appropriate. Also children can exhibit social appropriateness without understanding how to actually interact with others in their peer group. That is understood on the autism spectrum.
ReplyDeleteI would recommend two basic things for you. See if there is somewhere you can file a complaint against that advocate.If you signed a contact outlining her duties and obligations and she did not fulfill them I would sue her for the return of your money or refuse to pay her any outstanding balance.
Next I would get a real lawyer. Someone who is not dependent on the school district for their living or who does not have children in the district itself. Advocates for the most part have no idea what they are doing. They take a short course in special education advocacy and that is all. If you need to go to court you need to be prepared with someone who will kick butt. You can start with the COPPA website and see if there are any in your area or close by.Or go to Martindale Hubbel which is a listing of attorneys.
Good luck.
Elise, thank you for the detailed response to my post. When I started this blog, my intention is not only to share my experiences but to hear about the experiences from other people; to read the thoughts, opinions and insights from anyone in the special education system. So, I thank you very much for sharing your thoughts on the law here.
ReplyDeleteI agree with your comments and observation about the situation. It's mind boggling to think a school district will attempt to add validity to the "professional" opinion regarding placement from an advocate. Further, it's unsettling the advocate didn't stick to her guns and refuse the visit on the basis she isn't qualified to offer concrete opinion on placement. I will add the reason the school district pressed for the advocate's participation is they are disputing the findings from the NYU Child Study Center!
Your response to my post is meaningful and enlightening. I will be writing another post about the recent meeting so please check in and comment.