When Inclusion Hurts

Yes I said Inclusion can hurt.  It can be downright painful.  And that’s truth.  The old saying “Nothing Good Comes Easy” can definitely be applied toward the process of including.  And each year, things change (teachers, therapists, kids, the social dynamic increases).  Inclusion in the early years is not as much of a challenge than when hitting second and third grade.  Preschool and Kindergarten are easy relatively speaking.  Everyone is young and cute…drool, tantrums, language on different levels is widely accepted for most as all the children are starting off.

Around the second and third grade, children begin to vocalize their preferences for people and their same age peers.  The age of tolerance shifts with children now stating who they want to play with, who they do not want at their birthday parties.

While our kids are included, they may not really be included in the real goings on of the heartbeat of the classroom, it’s social life.  Who we are can be surmised in three (credit to the first fantatstic ABA Therapist I worked with who is now taking it easy)

    1. Work/Vocation/School

    2. Leisure

    3. Relationships

The benefit of inclusion is unmistakeable and undeniable.  There is benefit of being with others.  It creates community, belonging, collaboration, communication, diversity of thought, acceptance, tolerance, patience, understanding, learning from others  support,partnership and much more.   We need all these ingredients for successful work goals and aspirations and our own interpersonal relationships.  However, these benefits are often overlooked and or ill prepared for beyond the IEP meeting, observations, and data collection.  The core of inclusion of people.  One part of the “people” needs to gain instruction and learn how to “Be”…Belong, Behave, Be.  The other part of the “people” needs to learn how to “Accept”…Accept different.

I watched last nights episode of Parenthood (3.20.2014) on ABC and Max (the character with Aspergers) asked “Why do kids hate me?”.  As I sat on my couch, I was pained by the question.  Max probably outscores, out ranks his classmates academically, but socially he is different.  His parents are visible fixtures at the school and quite involved.  Still Max is lonely, no longer has his only friend, and asks a poignant question.  You see Max has passed the age where his difference was tolerated.  That cute kindergarten, pre-k, even first grade stage has gone.  Gone are the invitations to the parties, the partners at school trips, and now he is the last to be selected at gym class.

Best Buddies and other programs help, but still authentic relationships are not created there.  Not at all.  What is created is duty, tolerance, or the sweet little girl who mother’s the child with special needs.  Our kids don’t need that.  They need

  1. Work
  2. Leisure
  3. Relationships (Real Authentic Relationships where celebration of who they are good, bad, indifferent…exists always).  These relationships with same age peers.

Can they exist?  Absolutely!  I will give you the perspective of having been a specialist who has supported many schools including, a school SLP, a private practitioner and master of autism 🙂 (Yes I said that)

Steps Toward More Successful Inclusion for a School Team

  • Prepare the class.  Not parent preparation where a story is read to introduce the child.  Truth is, kids know who is different on the first day of school.  Instead, someone that represents the school team should introduce a theme (Being Kind, Being Tolerant, Being Human).
  • Talk to the students about differences.  Not about the disability the child being included has.  In fact, don’t point out the child.  The discussion should be about being different being okay.  Being tolerant.  Being kind. Being human.
  • Have this talk several times THROUGHOUT THE YEAR!  Interactive exercises about social cognition and perspective taking.  So often we are teaching children with autism about how to perspective take, you must teach “normals” (a word taken from one of my beloved families…miss you) how to perspective take.
  • Do reverse mainstream for social groups.  Don’t pick the child who “mother’s, the child who hovers”.  Instead, understand the pecking order and social dynamics of the classroom (who is popular, who do all the kids want to sit with, what are the kids talking about)
  • Change the conversation topics of social groups from “What I did over the weekend” to Pop culture, current events, things happening around school, favorite TV shows.  Make your social group so interactive that interrupting, loud voices are continuous…why?  Because that’s what kids do when they talk to each other.
  • Build an IEP that creates a matrix that identifies social opportunities for engagement.  These are not goals. But if math is a strength, there should be a daily goal of making sure your kid is a RockStar and his peers see him as the go to person for help in math.

Advice to Families

  • Decide what’s important.  What are the priorities.
  • Always think about the social implications of the therapy tools we use publicly.  For instance, chewy tubes/wrist bands/tape.  While important, may not present the best picture of social engagement and invitation for a viable social peer from a peer’s perspective.
  • Don’t dilute intervention recommendations by reducing the number of hours recommended.  If the therapist recommends 20 hours a week, get the 20 hours.  Wanting the same results of 20 hours hours per week with 5 hours of ABA per week will not get you the results you seek. Figure it out…and the priorities.
  • Always think with the end in mind.  What are my child’s strengths?  Let’s find social situations and activities that highlight his strengths.  For instance if you have a 12 year train enthusiast, be okay, and find a train enthusiast club in the community that will embrace him because the leisure is a shared interest and common denominator.
  • Don’t read a book to the class at the beginning of the school year.  Your child would say “Mom that’s so embarrasing’ and it is…get the school team to do the above.
  • If there are Inclusion or NET therapy groups in your community that specifically work on the skill of Being in the General Educaton Setting…don’t walk, but RUN and enroll.
  • Use the summer to intensify that which you need to improve.

I spent two years as an SLP in a private school (middle school) for kids with High Functioning Autism, Nonverbal Learning Disabilities, Aspergers.  I had a group of boys and we worked on social skills, social thinking every day.  They are now in college/vocational training/junior college, one drives a Subaru :-).    One of the boys went to a general ed highschool (with some support) after the middle school experience and was a rockstar by my and his definition.  He was comfortable with himself.  He had fun and because he was able to be okay with him, so were his friends.  That’s right I said friends.  He was great with numbers and organized, so he kept statistics for one of the sports teams.  He became important to the other players because of the information he held.  This family knew his strengths…he loved sports, not the most coordinated, but knew numbers.

Max was right lonliness and non acceptance feels like hate.  The responsibility to the child and to the classmates are the school team and the familiy.  These adults become the bridge and have a wonderful opportunity to teach disability is just different.  Of course proactive intervention is the best option.  But, the first meltdown may precede the talk.  Either way, it’s never too late.

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