At times, as a parent advocate for a child with intractable epilepsy, we must become warriors. Your school age child is entitled to a Free and Appropriate Education (FAPE) beginning at age 3 years old in most states.
Below is an example of a letter written to advocate for a child to be placed in a private pre-school.
Special Education Program
November 1, 2009
I hope you had a good couple of days off for fall break. I’m writing to request an IEP meeting to include you, ______________, and teachers/therapists that may be appropriate to discuss my child’soptions within and outside of the school system. Three weeks have passed since she has been to class at the _________ School and she is not receiving school provided therapy services (although she still receives outpatient speech and OT through private pay).
Our overt concern regarding the programs offered by the school system for my child outside of the most restrictive environments of _______School and __________ School is the lack of a full time registered nurse (RN) at other schools throughout the county. As you are aware, my child’s fragile medical condition that includes unpredictable and often prolonged seizures requires intervention by a trained medical professional. The powerful medication utilized to stop a seizure and the potential for CPR/ advanced CPR intervention from breathing complications associated with seizures, medication, or the combination thereof necessitate a continued need for nursing back up for the one-on-one assistant and the teachers of the classroom. Since her third birthday, the school system has provided a one-on-one assistant for her safety in the most restrictive school settings that have a nurse. Back up nursing assistance for her one-on-one was available at all times at _____School since there were two nurses (one RN and one licensed practical nurse (LPN)). To my surprise and concern, _____ School had a nurse but when she was off there was no back up and a nurse was not available . I was told that both ______ School and ________School, the two schools you suggested I visit, had a nurse visit the school one day a week. My child needs to be at a school that has a nurse available at all times to assist with safe seizure and respiratory management until an ambulance arrives.
We are also concerned that behaviorally and/or emotionally impaired children are eligible for the blended programs at ______School and _______School and may enroll in either classroom at any time. Although we respect the right for these children to receive a free and appropriate education from the school system, we found that children with behavioral and emotional impairments are more likely to hit our child, scream, and cause the chaos that precipitated seizures at the ____ School. We should avoid placing her in an environment that will make it difficult to impossible for her to learn as her seizures, both obvious and less conspicuous (sub-clinical seizures) are triggered by the noise, chaos and physical abuse I witnessed with this peer group at _______ School.
While the overall development of children in both classes I visited last week at ______ School and ______School is better than the overall development of children at either school she has attended, my child benefits most from an environment of socially appropriate children, most of which are typically developing and can raise the bar for her intellectual, behavioral, social and emotional development. We have witnessed this first hand by allowing her to attend typical ½ day summer camps this past summer and witnessing the developmental progress through peer interaction.
Over the last two years we have placed our child in the school system’s most restrictive environments, which have failed to provide her the most appropriate learning environment. She had more frequent seizures at ________ School due to unavoidable triggers including noise, chaos, and physical abuse by other children and stress. This is evidenced by the increase in seizure activity beginning at the end of August and ceasing once she discontinued participating in that environment. Over the last two years, her seizure frequency has been one seizure every 7-10 days lasting under 2 minutes most of the time. While at ________ School, her seizure frequency increased to about every 3-4 days and she would sometimes have two to three seizures in the same day. Since we removed her from this environment, she has gone 18 days without having a seizure, despite the onset of a bronchial pneumonia that precipitated seizures on the 18th day and provoked an admission to the hospital. During this time, as you know, she was extended an invitation to visit a private pre-school to see how she could adapt to the environment. While at the previous school, on most days by 9:30 – 10 am, she had to be removed from the classroom due to excessive “eyeblinks”, which are myoclonic seizures due to excessive noise, chaos, stress, or physical abuse from a peer (often manifested as hitting or pulling toys roughly). During a week long period of visiting the private pre-school from 9 am – noon, she did not have to be removed from the environment due to seizure triggers at all. Her fluency and articulation, as well as social interaction and movement to direct play vs. parallel play greatly improved.
My child thrives in a structured environment that offers multiple activities and opportunities outside of one contained classroom with typically developing peers who can raise the bar to her educational and social/emotional development. She needs a one-on-one assistant to for safety and re-direction, and she needs to be at a school that can provide medical back up with an RN when needed. She cannot begin her day early as rest is important for seizure prevention and often she has trouble sleeping. Riding a bus is not an option for her, as she is extremely heat and noise sensitive and when we inquired about a bus while she was at ________ Center, we were told she would have to get on the bus at the end of our street, in the middle of an intersection in which a traffic light is about to be placed due to excessive car wrecks. She rests better in her own bed and when she can make it through an entire morning to nap time, she is exhausted. She needs a school close to her home so she can nap and rest in her bed. Dravet syndrome is rare and so are her needs. She is at risk for developmental regression at each seizure, and we want to ensure she is educated to her full potential in the most comprehensively appropriate environment.
As I left each classroom I visited on your request last week, I asked both teacjers a simple question. They had been given detailed information about my child’s learning style, medical condition, and seizure triggers. My question was “If she could be placed in a structured learning environment with well-behaved, typically developing children, would that environment be more appropriate for her than the blended classroom I’m visiting today.” I was told by both of these teachers that the environment I alluded to would be preferable to the blended classroom for her, but that the blended classroom was the closest to what was ideal as the public school system did not offer an ideal environment for my child. Thank you for taking this information into consideration as you consider recommendations of placement for my child in an appropriate Pre-K classroom.
According to NC 1501-7.1, the LEA can refer a child with disabilities to a private school. Further, NC 1501 – 7.2 describes that when the LEA places or refers a child to a private school, the IEP requirements must be met and there is no cost to the parents. Further, the child with a disability has all the rights of a child with a disability who is served by a public agency.
We believe FAPE (free and appropriate education) is at issue due to the following:
1) The ______school provided the most appropriate medical environment with availability of nurses as back up for my child’s assistant; however, the peer stimulation was lacking; the principle would not make accommodations for well document seizure triggers in the school building; and the school started at 7:55 am, an impossible time for my child to be there on time and participate in learning activities while living 32 minutes from the school.
2) The ______ School was too unstructured, chaotic, loud, and my child was physically abused by her classmates, all which prompted additional seizures and hindered learning. There was one nurse at this school and when she was out of the office there was no back up for my child’s one one assistant should a medical emergency arise. My child needs school placement that has a nurse available at all times, in the least restrictive environment so her opportunities for learning are optimal.
3) _______School and _______School offer blended self contained programs. We believe this is too restrictive of a learning environment for our child at this point in her development. Behaviorally and/or emotionally impaired students may enroll in the classroom and cause harm to our child by exacerbating her seizure condition and/or physically harming her. The classroom start time is prior to 8:30 am and the facilities are 20 – 25 minutes from our home. Our child sleeps from 8 pm – 8 am and often has disturbed sleep. There is not a full time nurse at either school and a nurse may visit one time a week. At _____school, the therapists spend one day twice a month in the classroom. With our child’s unpredictable seizures, we cannot predict when she will be out of school and feel this therapy schedule will limit or potentially void her therapy time.
FAPE is at issue in our child’s case. We have not enrolled her because we believe the LEA should take our child’s individual needs into consideration along with the evidence submitted and place her in a private pre-school along with her one-on-one assistant for the following reasons:
1) There is a full time nurse and a back up nurse at school at all times to assist with seizure and respiratory management.
2) During her visits to the classroom, she was able to stay in the classroom until lunch. At the _______ School, she had to be removed from the classroom almost daily due to excessive stimulation from hitting, screaming, chaos, or stress.
3) She remained seizure free for 18 days following her last day of class at the ________School, while visiting the Pre-K classroom at the private preschool.
4) The private preschool classroom is the least restrictive, is structured, the children are well behaved, and are good role models for developmental, social, emotional, and behavioral growth. This group of typical peers raise the bar for herand she strives to meet them where they are.
5) The teachers and administration are willing and eager to work with the school system to implement her IEP and manage her developmental needs. There is a full time speech and occupational therapist on staff to follow her closely and work with her on her time, when she can, at whatever stage she is going through with her syndrome.
6) She is happy visiting the private preschool classroom and talks about her teacher and the children there. Her verbal and social skills are improved after each visit. She is interested in more “typical” toys and play. She wants to go back to visit, even on the weekends she asks.
Please consider LEA placement at private preschool for my child effective immediately. The private preschool is the appropriate environment for my child’s education.
I look forward to hearing from you and scheduling the IEP meeting at the earliest time available.