Inclusion: A Journey So Far & Lessons Learned

By Lisa Ackerman
April 2005

Inclusion – the process of taking a special needs individual and including them in a typical education setting - is a tough, delicate, extremely complex subject to address. Each situation is unique to the child and the desired setting. 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 be applicable to all that read 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 these considerations. Properly preparing the child and the support staff is crucial for success. Having a plan and a working IEP (Individualized Education Plan) and detailed indepepent assessments are the first important steps of the inclusion process.

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 with 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 will be a part of everyone’s life today or in the near future -- it is just a reality we face given the numbers 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 the school setting.

First, it is important to define inclusion and mainstreaming. Inclusion is where a child with an IEP is placed in a “typical education setting with typical peers” for some or all of their educational day. Mainstreaming is where a child with an IEP is placed in a “typical education setting with typical peers” for a designated portion of their 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 for proper execution and to address the unique needs of the child. These four areas outline things 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. These reports, findings and recommendations should be reviewed in the IEP process and provided to the teacher, aides and any 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. Areas to review are:

• How distracting is the classroom?
• Is it a contained classroom (i.e. a rectangle) or does it have adjacent hallways, opening dividers, 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?)
• Where is the location of the classroom in the school relative to access to exits, playgrounds, lunch rooms, and restrooms?
• How is the “friendliness” of the children at school and in the classroom?
• What type of playground and recess areas are available to all the children? (i.e. is their a separate recess time, playground area for this child’s group? What other children will be out on the play ground at the same time as the special needs child?)

All of these play a key factor in the child’s comfort level in school setting. Exploring the facility with the child well before school starts and it 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. His/her involvement on the child’s case, 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, evaluate for fluency and flow back and forth from the other support staff.

Some considerations with your key team member include:

• The regular education teacher need to attend IEP meetings
• Occasionally it is recommended they should attend supervisorial / home program or clinic meetings (if there is an outside program in place for the child.)
• Parents and professionals who work with your child inside or outside of school should work with the teachers in:
• Making them an important part of the team
• Supporting their efforts by helping in the classroom and/or tasks needed for the child’s placement needs.
• Assisting them in obtaining any necessary training or materials
• Providing on-going support, their critical input, and troubleshooting as needed

4. SUPPORT: The school site support staff play a pivotal role in the child’s inclusion experience. These key players include: aides, resources, the principal, and the school administration staff. These people should look at inclusion as something to grow to and believe in for all the children on campus when applicable at some point in the education process.

Each of these items depend on each other and cannot go alone or without all “ 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 including special needs children included) 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 these general, blanket statements. A team of experts (who know and have worked with the special needs child) should be involved in this process

Key placement tools unique to the child also include a review of the following:

• A behavior plan
• If the child has any behaviors – denote a plan on how to address them, a mechanism to log progress/issues and educate the staff on how to decrease or eliminate these over time. In addition – addressing in any new behaviors that crop up.
  
• Required visual or auditory supports for the child
• If the child is has visual or auditory issues or strengths. It is important to identify ways to use any strengths and 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 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 arise that need to be addressed to assist the child in their typical education setting.

Note: are some great resources via the web or in book form on all of these topics at the conclusion of this article.

The moment a child starts school and the frequency they attend should also be considerations included in the planning process. You may wish to start the child off slow with the goal of moving towards a full day / five day school week. Sometimes this is not possible due to other interventions and therapies being done with the child. 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 (i.e. three days a week in the mornings, moving to full five day attendance / entire school day)

Building community, awareness and parent involvement is 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 PTA, the child’s classroom, assisting the teacher, and the district’s Community Advisory Committee (CAC) for special education should be including in your child’s program. Whatever time a parent spends at the school will pay back 10 fold to their family and especially their child.

With these considerations in place, planning and executing inclusion can be more successful than “just trying inclusion” out for a child.

CASE STUDY OF ONE

Here is my personal story about my son, Jeff. Jeff was diagnosed with Autism in September 1999, and following quickly were some additional diagnoses of Apraxia and auditory processing issues. Since he was 2 ½ 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, lost them and did not speak again until he was almost 5 years old.

In 2003, when Jeff was 5 ½, 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 talk, 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 setting to typical setting to repeat Kindergarten with an aide and this year to typical first grade with an aide. These experiences have been a dream for our family and especially 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 recent lesson of 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.

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 and Jeff wears what appears to look like a hearing aid. Data has demonstrated his response time and ability to work more independently was greatly increased.

In 2005, Jeff is completely included in a typical first grade classroom. The aides that work with Jeff now see a considerable decrease in the time they have to support Jeff. It has gone from 100% aide dependency in the SDC Kindergarten to first grade with somewhere south of 50% dependency during a typical school day. Jeff loves his routine at school and is learning new items and reinforcing already taught items in his school day.

School is not all that happens in Jeff’s day. His home program in still in place with areas including: ABA, Speech, Occupational therapy, social skills classes, and play dates are still in place after school hours.

To get Jeff into typical kindergarten 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 will evaluate in 30 and 60 days to see how he is doing and decide as a team at his triennial IEP in November 2002. Everyone got a vote: 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 kindergarten just fine. At the end of kindergarten, they recommended to move him up to typical first grade – not an SDC class. (Note: both speech delayed and autism SDC classes were offered by the school district before typical kindergarten was presented to the team.)

On the 1-2 times a year when I know Jeff is NOT sick but is 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 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 for at the most 2-10 minutes, 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 talk, and was not even able to pay attention with a teacher teaching him one-on-one. And oh yeah, he has autism, apraxia and auditory processing disorder! No wonder this process called inclusion was tough! The preparation work took thousands of hours of ABA, Speech, OT, biomedical intervention, social skills training, facilitated / scripted play dates, consultations with professionals and prayer 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 entire first grade, second grade and beyond at this time. We take it day by 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 items listed above look good and the team that works with your child think 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 the special needs child.

The stories I have heard have been heartbreaking. So as parents the “CEO’s” of these amazing children, we have to decide when to make these decisions and to push things forward. And even more important – know when to adjust if things are not quite working out as we would like or was 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!

Conclusion:

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 as long as Jeff continues to learn from the typical environment. Every day, Jeff learns more and loves being part of his environment, his school and the community around him.

Resources:

Web sites

General Information:

• Applied Behavioral Analysis: www.lovaas.com
• Apraxia: www.apraxia-kids.org
• Auditory Processing Information: www.ncapd.org

Inclusion web resources:

Books for You, the Teacher & Professionals:

Inclusive Programming For Elementary Students with Autism
by Sheila Wagner , 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 , Rebecca A. Moyes

Transition as a vehicle: moving from high school to an adult vocational service provider. : An article from: Journal of Disability Policy Studies [HTML]
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 [HTML]
by DIANE ADREON , 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

Inclusive Programming for Middle School Students with Autism by Sheila Wagner

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

Author Information :

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.

TACA Family Stories

Before		During		After

I had Christian when I was 19 years old.  For the first year of his life I couldn’t imagine anything being wrong with my baby.  He smiled; he laughed; he rolled, crawled and walked on time.  At age one he had a massive overload for his little immune system.  He had two ear infections, a high fever, back to back treatment of major antibiotics and he was given his MMR, varicella and HIB vaccines while he was still very sick.  Christian faded away for the next 6 months.

At age two he was diagnosed with full syndrome Autism.  I met an amazing mother who introduced me to the group Talk About Curing Autism.  Before I found out about TACA, I had no clue that there was hope for my child. From that day on I knew that it was my job to get my son back and undue what had been done to him.

It has been three years since Christian was diagnosed with Autism.  I had taken what I had learned from TACA, found wonderful therapists, began a diet, found a DAN! Doctor, and took control of my child’s health.  I heard his first word when he was 38 months old, and let me tell you, it was worth the wait.   

Today Christian attends a typical private preschool. He is the only child in the class with a diagnosis…and none of the other parents know that.  He speaks clearly, has friends, reads, pretends on the playground and even knows what he wants to be when he grows up (which of course changes weekly). 

I can honestly say, if I had not found that mom (you know who you are), and not been introduced to TACA, I don’t know where Christian would be today and I don’t know if I would ever have been able to help other parents starting this journey.  Thank you TACA, thank you my hero mom, and thank you Christian for fighting this with me.  I love you.

Chelsi, Washington State