Inclusion: A Journey So Far & Lessons Learned
By Lisa Ackerman
Inclusion – the process of taking a special needs individual and including them in a typical education setting – is a tough, delicate, and extremely complex subject to address. Each situation is unique to the child as well as the desired setting – which can change year to year. This statement can especially be true for children with autism and other developmental and behavioral issues. My goal is to give parents and professionals a viewpoint on inclusion for their own use so they may benefit from a parent’s perspective.
It is also important to note that my beliefs for children may not apply to everyone who reads this article. In many situations, I believe most children–typical or otherwise – should be fully included or mainstreamed at some point in their school experience. The process of inclusion should incorporate many steps in planning, preparation and support of the classroom experience. I am not a big believer in throwing the child into “the deep end of the pool” of inclusion without those prior considerations and preparations. Properly preparing the child and the support staff is crucial for success. Having a plan, a working IEP (Individualized Education Plan), choosing the most Least Restrictive Environment (LRE) possible (within the available school setting), and detailed independent assessments are the first important steps of the inclusion process.
This article was written with having my son spend one year in a Special Day Class in Kindergarten, repeating the next year in typical education Kindergarten and having him in a typical educational setting ever since (at the time of this printing, my son is in 8th grade.) How long will my son remain in a typical educational setting? The answer is simple: as long as the placement is appropriate, progress is made, and he continues to learn from the curriculum presented. All the elements for my son’s success are detailed in this article. It is my hope that other parents can utilize this as a launching pad for their team to review the options right for their child.
Inclusion programming does not just benefit the special needs child but helps all the children and adults in the classroom. With the overwhelming rise of autism in the past two decades and no end in sight for newly diagnosed children, we are all going to encounter people “on the spectrum” during our life. Interaction with children, teens, and adults affected by autism will be a part of everyone’s life today or in the near future–it is just a reality we face given the numbers of individuals affected. Getting familiar with special needs individuals early on in one’s life can make a large difference for everyone’s future in all communities and especially in a school setting.
First, it is important to define inclusion and mainstreaming. Inclusion is a process in which a child with an IEP is placed in a “typical education setting with typical peers” for some or all of their educational days. Mainstreaming is process in which a child with an IEP is placed in a “typical education setting with typical peers” for a designated portion of each school day, such as art, physical education, music, story time, etc.
Second, proper supports in the classroom are also key for inclusionary programming to be successful. Supports could include some of the following:
- Instructional Aides who assist the child in a dedicated or part-time fashion
- Visual supports for curriculum, activities, schedules and other key areas
- Curriculum pre-training or homework help
The prospects for inclusion greatly depend on THE BIG FOUR components for proper execution and to address the unique needs of the child. These four components outline different details to review, address in a plan, and understand before placing a child in any classroom. These big four areas include:
1. Assessment A complete assessment of the child to address both their strengths and disabilities (including desires to be social, ability to learn from peers, behaviors, and disabilities unique to the child.) Assessments for children on the spectrum should include: behavioral, speech, academic, and psychological aspects. These reports, findings, and recommendations should be reviewed in the IEP process and provided to the teacher, aides, and any other personnel assisting in the classroom. Related reading on assessments.
2. Environment The classroom & playground setting should be studied and reviewed for the needs of the child and assessed as a proper LRE. Areas to review are:
- How distracting is the classroom? (i.e., are there classroom pets?)
- Is it a contained classroom (i.e., a rectangle) or does it have adjacent hallways, opening dividers, and/or easy access to exits?
- How busy is the classroom? (i.e., are there a lot of interruptions?)
- How many children are currently in the classroom? (i.e., is the classroom at full capacity? Will more students be placed in the classroom?)
- Where is the location of the classroom in the school relative to access to exits, playgrounds, lunchrooms, and restrooms?
- How is the level of “friendliness” of the children at the school and in the classroom?
- What type of playground and recess areas is available to all the children? (i.e., is there a separate recess time and/or playground area for your child’s age group(s)? What other children will be out on the playground at the same time with your special needs child?)
- How is access to typical school activities presented to the student population, including my child? (i.e. assemblies, dances, off site activities.) During these activities, we often would have an aide assist Jeff or a designated school friend that was helpful in guiding my son along during the activity.
All of these details play key roles in the child’s comfort level in a school setting. Exploring the facility with the child well before school starts and is packed with children is highly recommended. Watch what the child is drawn to, shies away from, and how they interact. These responses will provide important clues in preparation and planning for their first day of school.
3. Teacher The teacher is one of the most important parts of the child’s team. Technology also plays a big role with the teacher in what they use to engage students. His/her involvement with your child, teaching style such as visual supports, willingness to adjust learning presentations as needed, and willingness in general to learn, is a crucial consideration. Finding an easy way to communicate information back and forth is important to set up, and evaluate for fluency and flow of communication back and forth from the other support staff.
Some considerations to review with your key team member include:
- The regular education teacher need to attend IEP meetings
- Occasionally, it is recommended for teachers to attend supervisorial/home program or clinic meetings. This is necessary if there is an outside program in place involving in-classroom aides and supervision of a behavioral program. If teacher attendance cannot be arranged, it is important to share any meeting minutes and/or have follow-up conversations between the program supervisor and teacher to keep them apprised of changes in the child’s program.
- Parents and professionals who work with your child inside or outside of school should work with the teachers at:
- Making them an important part of the team.
- Supporting their efforts by helping in the classroom and/or with tasks needed for the child’s placement needs.
- Assisting them with obtaining any necessary training or materials.
- Providing on-going support, receiving their critical input, and troubleshooting as needed.
4. Support The school’s support staff plays a pivotal role in the child’s inclusion experience. These key players include: aides, resources, the principal, and the school administration staff. All of the school’s staff should look at inclusion as something to grow used to and should believe it to be possible for all the children all children with autism at some point in the education process.
Each of these items depends on each other and cannot work alone without all of “ the big four” items in place and fully assessed. There are some great articles on the importance of inclusion. Of the ones I have read, all have been written: A) with a leaning towards typical kids (and not having any outside distractions such as including special needs children in the classroom) and B) from the perspective that every child should be included, period–no exceptions. There must be careful planning, preparation and evaluation for each child without making any general, blanket statements. A team of experts (who know and have worked with your special needs child) should be involved in this process
Key placement tools unique to the child may also include a review of the following:
- A behavior plan: If the child has any negative behaviors–denote a plan on how to address them, create a mechanism to log progress/issues, and educate the staff on how to decrease or eliminate these over time. In addition, educate staff on how to address any new behaviors that crop up.
- Required visual or auditory supports for the child: If the child has visual or auditory issues, it is important to identify ways to use any strengths and to shore up the deficits in the classroom setting.
- Primers to prepare the child for all aspects of their day: Prepare your child by visiting the school site, discussing how the day will be scheduled, and most importantly, when mom or dad is coming to pick them up!
- Social stories for addressing and understanding new situations: Prepare social stories for situations that may arise that need to be addressed to assist the child in their future typical education setting.
- Technology: Technology may be implemented to assist learning and engage the student. These may include augmentative communication or listening devices so pre-verbal children can participate in classroom activities. Devices could include: iPads or other touch screen technology or FM auditory trainers/listening devices.
The moment a child starts school and the frequency of their attendance should also be considerations included in the planning process. You may wish to start your child slowly with the goal of moving towards a full day to five days of school per week. Sometimes this is not possible due to other interventions and therapies that your child needs. Key considerations include:
- Starting school: when a child should start (the first day of school, after the first month, etc.)
- How often should they attend and grow to attending more and more days (i.e., first, three days a week in the mornings and then progressing to full five days of attendance, each for an entire school day)
Building community, awareness, and parent involvement are key during the inclusion process. School should not be viewed as your child’s placement, but your child’s school and community. Parental involvement in the PTA and the child’s classroom, assisting the teacher and working with the district’s Community Advisory Committee (CAC) for special education should be included in your child’s program. Whatever amount of time a parent spends at the school will be paid back tenfold to their family and especially, to their child.
With these considerations in place, planning and executing inclusion can be more successful than “just trying out” inclusion for your child.
Case Study Sample
Here is my personal story about my son, Jeff. Jeff was diagnosed with autism in September 1999, and quickly following that diagnosis were some additional diagnoses of apraxia and auditory processing issues. Since he was 2.5 years of age, Jeff has received thousands of hours of ABA (Applied Behavioral Analysis), speech therapy, occupational therapy, and other intensive therapies such as Fast ForWord, Tomatis, social skills training classes, and biomedical interventions to address his unique needs. Jeff also acquired an auditory trainer to address his auditory processing needs in December 2003. It is also important to note that Jeff had words at 15 months, then abruptly lost them, and did not speak again until he was almost 5 years old.
In 2003, when Jeff was 5.5, he started in an SDC (special day class–speech delay) kindergarten. There were seven kids and one teacher (who was a speech pathologist), a classroom aide and Jeff’s individual aide. This was a hard year because Jeff was still learning to speak, as well as learning the structure in the classroom. These concepts and conditions were all new to him and the transition proved to be difficult. He participated in preschool prior to his SDC kindergarten, but this was his first experience with full day education. We worked with Jeff slowly through the process and he started to enjoy school, especially once he understood what was expected from him. Over a two-month period, Jeff integrated into his classroom, but still had many issues with attention, activities, and behaviors.
In 2004, Jeff went from that SDC setting to a typical classroom setting to repeat kindergarten with an aide and in 2005,he was placed in a typical first grade classroom with an aide. These experiences have been a dream for our family and especially for Jeff. He loves school, loves his teachers, and has friends who like him. He is thriving and learning in these typical classroom environments.
Every month, we have to pre-teach some of the abstract curriculum (for example: a sample pre-lesson was about how an egg turns into a chicken.) From the teacher, I would obtain certain curriculum in advance, make copies and use it in Jeff’s in-home program for teaching some advanced concepts ahead of time.
In addition to curriculum preloading, we also incorporate a major classroom modification with a personal auditory trainer/FM device. This device is where the teacher and aides are microphoned with a special device while Jeff wears what looks like a hearing aid. Data has demonstrated his response time and ability to work more independently was greatly increased.
In 2011, Jeff entered 8th grade in a typical educational setting. Jeff still has his aides for most of his school day. The aides that have worked with Jeff for years see a considerable decrease in the time they have to support him. It has gone from 100% dependency in the SDC Kindergarten class to around 30% dependency in 8th grade during a typical school day.
School is not all that happens in Jeff’s day. His home program in still in place with areas including ABA, speech and occupational therapy, social skills classes, and play dates which are all still in place after school hours.
Getting Jeff into a typical kindergarten setting was a challenge. At our IEP, we basically said, “Please put Jeff in typical kindergarten with our trained aides that know him well.” Most of our team agreed and suggested this placement in their expertly penned assessments and reports. We explained we would evaluate both 30 and 60 days later to see how he was doing and decide as a team at his triennial IEP in November 2002. Everyone got a vote including the behaviorist/supervisor, speech pathologist, occupational therapist, his SDC kindergarten teacher, school administrator, school psychologist, and both parents. All the votes came in and most of the team agreed Jeff was doing well in kindergarten, but we had to keep the other services in place to augment his needs. Jeff stayed in typical education from the second round of Kindergarten through the grade he is in today. He is able to keep up academically and now his mom cannot help him with his math and science homework – they’re past my ability!
On the 1-2 days a year when I know Jeff is NOT sick, but is in line for a bad day (call it mother’s intuition), I keep him home. Let’s just say it is a good idea to listen to this intuition. This is a rare occasion. Because of these occasional “preventive strikes”, I have never received a call to pick up Jeff from school due to behaviors or any other related issues. I can only recall aides saying less than a dozen times in three years that Jeff needed to be removed from class for inappropriate behaviors at the most, for 2-10 minutes, and then he was back on track, ready to learn, and be a part of the class.
Could we have done inclusion from the beginning? I don’t believe so. Due to his diagnosis and issues, Jeff had major behaviors, learning and attention issues, could not speak, and was not even able to pay attention to a teacher teaching him one-on-one. And oh yes, he has autism, apraxia, reading comprehension and auditory processing disorders. No wonder this process called inclusion was tough! The preparation work took thousands of hours of ABA, speech therapy, occupational therapy, biomedical intervention, social skills training, facilitated/scripted play dates, consultations with professionals, and prayers to get this started and help Jeff be successful. The goal was setting him up to be successful–not throwing him in the deep end of the pool with a concrete anchor.
No one knows if Jeff will be able to handle the entire first grade, second grade and beyond at this time. We take it day to day, month by month. That’s autism and the myriad of other disorders. I know this is true. Each time the bar is raised for Jeff, he rises to the occasion. He also loves his friends. We just have to give him that chance and set him up for success. And I will continue to raise the bar and expect him to take that step. There is a team there to help–including me, his biggest cheerleader. We take the time to celebrate his victories and brainstorm on any issues that arise. This has proven to be a powerful combination for his success.
While I realize that this scenario is not ideal for everyone and does not work for every child, if the BIG FOUR (assessment, environment, teacher(s), and support) items listed above look good and the team that works with your child thinks he or she is ready, inclusion deserves an evaluation and a possible good college try. But if the BIG FOUR listed above are not totally in line and ready to go, inclusion can be a nightmare for all parties involved–especially for the special needs child.
For academic subjects that need help (such as English and Math word problems), we have integrated outside augmentative programming to shore up these areas of need. These providers have included: Learning Rx, Lindamood Bell Learning Centers, and after school study hall with trained teachers to assist in acquiring the curriculum and reinforcing teacher instruction.
The stories I have heard have been heartbreaking. So as parents, the “CEOs” of these amazing children, we have to decide when to make these decisions and to push things forward. And even more importantly, we need to know when to adjust if things are not quite working out as we would like or as planned. Having a Plan A, Plan B, and Plan C for school placement options is truly important, but don’t be married to any of them. The odds are placement will change and be modified to meet your kid’s individual unique needs. (Hey, wait a minute! That sounds like an IEP!)
While not everyone’s inclusion experience is perfect, our family has been fortunate to experience the good side of inclusion. Our goal is to continue this process for as long as Jeff continues to learn from the typical environment. Every day, Jeff learns more and loves being a part of his environment, his school and the community around him.
- Transition as a vehicle: moving from high school to an adult vocational service provider. : An article from: Journal of Disability Policy Studies, by Michelle L. Nuehring , Patricia L. Sitlington
- Transition to Middle and High School: Increasing the Success of Students with Asperger Syndrome. : An article from: Intervention in School & Clinic, by Diane Aderon , Jennifer Stella
- The Influence of gender patterns and grade level on friendship expectations of middle school students toward peers with severe disabilities, by Kyoung Gun Han , Janis G. Chadsey
Books for You, the Teacher & Professionals
- Inclusive Programming For Elementary Students with Autism, by Sheila Wagner
- Inclusive Programming For Middle School Students with Autism/Asperger's Syndrome, by Sheila Wagner
- Visual Strategies for Improving Communication : Practical Supports for School & Home, by Linda A. Hodgdon
- You're Going to Love This Kid!: Teaching Students With Autism in the Inclusive Classroom, by Paula Kluth
- Addressing the Challenging Behavior of Children with High-Functioning Autism/Asperger Syndrome in the Classroom: A Guide for Teachers and Parents, by Rebecca A. Moyes
- The New Social Story Book : Illustrated Edition, by Carol Gray
- The “Bible” for aides:
How To Be A Para Pro : A Comprehensive Training Manual For Paraprofessionals, by Diane Twachtman-Cullen , David DeLorenzo
Lisa Ackerman is a parent, not a professional with any credentials or background in inclusion or teaching special needs children. Her experience includes one child: her son, Jeff. She has quit her full-time job in management to work full-time with her son and other families with a group she founded called Talk About Curing Autism (TACA) in California. TACA started with 10 families in November 2000, and by April 2005, had more than 2000 families and seven meeting locations in California.