During recess I’d park my car and watch the kids play. My heart would go out to Kevin who I observed standing alone by the fence on the perimeter of the school yard.
by Debra Muzikar
“Inclusion is not an option,” says the Special Education case manager at Kevin’s Kindergarten IEP. “We have center-based instruction here. The students with special needs are placed in one class.”
“Center-based instruction sounds like a Special Education day class,” I say.
“We prefer to call it center-based instruction,” she responds.
The reauthorization of IDEA (Individuals with Disabilities Education Act) passed four years earlier. There was a mandate special needs students be placed in the least restrictive environment (LRE) – for many that meant regular education classrooms.
Dr. Lynn Koegel of the UCSB Koegel Autism Center is at this IEP on behalf of Kevin. Kevin was a participant in a long-term coordination of services grant with the Koegel Center.
“The research shows students with autism have better outcomes when fully included,” Lynn says. The administrator is reluctant. However, the team decides Kevin will be fully included in a regular education classroom with the help of a one-on-one instructional assistant.
Over the years I discovered inclusion isn’t about occupying space in a classroom. It’s about attitude – team work, cooperation, and communication. It’s not an easy concept to implement. The quality of the special education student’s experience depends upon the willingness of all team members to participate in a collaborative manner in the process. Granted teachers are busy. A special education student comes with unwanted paperwork and extra meetings. It makes a teacher’s job more difficult.
During recess I’d park my car and watch the kids play. My heart would go out to Kevin who I observed standing alone by the fence on the perimeter of the school yard. The other kids were jumping rope or running around playing tag. All were engaged except for Kevin.
Recess was the time the instructional assistant was expected to take a break. At our monthly meeting I mention recess is the most important time of the day for Kevin. If they could structure activities maybe Kevin will learn how to bond with other students. As usual my words seem to fall on deaf ears. An aide at recess costs money.
Towards the end of Kevin’s first grade year I visit the playground. I’m delighted to see Kevin jumping rope with a couple of kids. His new aide Gayle is swinging one end of the rope while instructing Kevin on the techniques of rope jumping.
That year the school contracts with the UCSB Koegel Autism Center. The visiting therapists are all impressed with Gayle. Gayle not only listens to their suggestions but welcomes them. I’m sure Gayle gave up many a break to facilitate Kevin’s social interactions during recess. Gayle likes to share what she’s learning about autism and Kevin. That doesn’t seem to go over very well with some teachers, nor the inclusion “specialist.” Gayle and I have a communication notebook that goes back and forth every day.
“I’m not allowed to talk to you anymore,” Gayle says. “And the communication notebook is being censored.”
Even though my communication with Gayle is now limited, I request her as Kevin’s aide the next year. The Principal denies my request. In the first two months of second grade, Kevin goes through at least four aides. The lack of consistency and training causes many meltdowns. He develops a reputation as a difficult child. One of Kevin’s aides Chris, who has his Master’s in Special Education, writes a scathing letter about not being supported or heard when he quits.
It wasn’t only Kevin who wasn’t being supported. The instructional assistants also felt unsupported. Kevin communicates, as always, through his behavior. I receive weekly notices from the school Kevin’s disrupting the class. They continually find a need to put him in restraining holds. This is usually a last resort for students with behavior problems; the need for such a drastic response occurs because of lack of training and a functional behavior plan.
“Kevin kicked a student at a fire drill,” the inclusion specialist tells me.
“The sound of the fire drill probably unnerved him,” I say. “What can we do to better prepare him?”
“He has to learn how to respond to a fire drill. It’s a safety issue,” she says. “We’re having a fire drill this Friday. Please prime him for it.” Priming means role-playing.
For the next week every day when he comes home from school, I tell Kevin “When the bell rings – BEEP BEEP BEEP, what does that mean?”
“Fire drill,” he responds.
“You line up with the other kids. Hands and feet to yourself. And walk outside staying in line.”
We practice this exercise at home. On Friday I receive notice from the school.
“Kevin had a major meltdown in the cafeteria. We had to put him another restraining hold. Please come and pick him up immediately.”
“What happened?” I ask.
“I decided to keep him out of the fire drill. I took him to the office and sat him in a chair. He became very agitated when the bell went off. Later at lunch he had a major meltdown in the cafeteria,” the inclusion specialist says.
My jaw drops. I’m mortified Kevin had a meltdown in front of all the other students in the school.
“Didn’t we agree on this? Kevin practiced that fire drill all week,” I say.
“Well…yes, but we didn’t want him kicking another student.”
I was able to convince the Special Education Director the school was placing Kevin at risk because of lack of cooperation and training.
“What if it were a real fire?” I ask.
Soon thereafter, Gayle returns as Kevin’s aide. The rest of the year goes smoothly. Kevin’s happy and doesn’t have another meltdown at school. That was the last time he’s placed in a restraining hold in elementary school.
As Kevin’s mom, I’ve learned how to adapt and change. Over the years, I’ve observed teachers and aides who easily learn and adapt. One teacher decides to teach the class in small groups because of Kevin.
“At the beginning of each year, I look at who’s going to be in my class and decide how I’m going to teach that class,” he says. I’m impressed. That was Kevin’s best year in school.
When you have a child like Kevin in the class flexibility is key.
We’ve been part of many different teams, some more functional than others. I’ve found the strength of the team and Kevin’s success depends on certain factors:
1. Students comes first.
2. Each team member is a valued participant.
3. Training is critical. Education isn’t limited to the students. Yet training will not work if the employees being trained are resistant to learning new techniques or the administrators don’t believe training is necessary. A good teacher will challenge herself as well as her students.
4. Flexibility and creativity are key factors in creating a healthy, inclusive classroom.
5. Open and honest communication is critical.
An IEP is a group process. We come together to teach and learn from one another for the betterment of the student. A good “expert” knows his limitations and will challenge himself to learn as well.
When Kevin was in elementary school I insisted on the aide attending team meetings. I would love if the teacher developed a relationship with Kevin, but this often was not the case. The person who knew Kevin best and ended up teaching him was almost always his one-on-one instructional assistant. Best practices says the teacher should be the person in charge of the included child’s education. Yet if the teacher feels resentment for the extra work that is required but insists on being the main point of contact, there’s not much chance for success.
Kevin has been in the same school district for 13 years and is moving out. It’s not been an easy journey. Yet we’ve made many long-lasting friends along the way. Gayle was at Kevin’s 20th birthday party last week when he came to California for an interview at a new placement. Why he’s been attending school in Ohio this last year is a long story. The restraining order placed upon him by his teacher was a reflection of our history at this school district. I don’t believe the restraining order was about Kevin at all. Being an outspoken parent advocate has its price.
Leadership in a school district is a huge factor in the outcome for students. Adult power struggles will always work against the students. Entitlement is an easy word to throw around when talking about special education students. Entitlement goes beyond the students.
I will be bringing Kevin to his new home this week. We’ve been challenged this last year, yet we’re grateful for the lessons learned.
We look forward to a bright future.
Debra Muzikar is writing a book about her journey with Kevin.
This story here is important, Debbie! It took me back to my own observations of my son’s recess-experiences before I even knew he was on the spectrum. It brought tears to my eyes for Kevin, for you. Anytime we see individuals in positions of authority exercising inflexibility and/or an attitude of knowing more than the rest of us, we are in the presence of entitlement. Children with special needs and their parents have are too often branded “entitled.” What about teachers and administrators who simply don’t want to adjust, don’t want to learn what they need to learn to better serve ALL of their students? You, Debbie, pointed this out to me and it’s true. Our children are here as much to teach others as they are here to be educated and INCLUDED in our educational processes and our CULTURE! There is too much richness in diversity to ignore it any longer. Those unable to adapt need to wake up and smell the roses. Their scent is as refreshing as it is impossible to ignore.
Wow! My heart broke again and again reading this, from the vision of your child alone at recess (one i have shared) to the way the district treated you and Kevin to the beautiful and positive stuff like your contiued efforts, and Gayle’s work.
Thank you for sharing,
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