Inclusion from the Parent’s Perspective

 Inclusion from the Parent’s Perspective

This is an excerpt from a book chapter that I recently wrote. Here is the link to purchase the book: https://www.igi-global.com/book/rethinking-perception-centering-voices-unique/293781

There is also an option to purchase just my chapter of the book. I would love to here your thoughts about this issue that is near and dear to my heart.

Chapter 10

“Brice has exceeded everything I thought I knew about how much autistic kids can accomplish.”  This is a quote that Notbohm (2019) recounts from a parent-teacher conference.  This perception is common.  It is this perception that many parents have become aware of when talking with teachers and other stakeholders in the life of their student with Autism.  This may even be the parent’s perception.  When a parent hears that their child has Autism, the parent has to decide how they are going to react to the diagnosis.  Notbohm (2019) describes the moment as feeling as if someone “scrambled image of my child’s future and sent it into the unknown”.  She remembers the meeting vividly and remembers having to take some time to gather her thoughts.  After the meeting, she decided that she would do everything in her power to “equip [her son] to live in a world without [her]” (Notbohm, 2019).    

Fear was her motivator (Notbohm, 2019).  As a parent of a child with Autism, I understand her motivation; fear is all of our motivators.  We fear for the futures of our children and the people who they will become.  This fear pressures us to fight for our children, get them all of the support they need to be successful, and do whatever it takes to achieve success.  If our children are truly going to be successful, parents need to wipe the “slate clean of preconceived notions” (Notbohm, 2019) and embrace them as they are.  This is essential to the success of our children, because as a parent, “what [I] choose to believe about [my] child with Autism may be the single biggest factor affecting his outcome” (Notbohm, 2019).   The perceptions that parents have of their children cause them to make decisions about their cognitive ability and skill level.  

If parents have a negative perception of the capability of a child, this negative perception will negatively affect the child by impeding his or her progress.  Perceptions are based on stereotypes and ideas that people harbor, both of which may be inaccurate.  It is important for parents to acknowledge that no two children are the same, so drawing conclusions about their child based on things that they have heard or researched is not wise.  Whether the perception that a parent has is negative or positive, the results could stifle the success of the child.  Parents and other stakeholders should erase their perceptions and preconceived notions and focus on the needs of the individual child (Notbohm, 2019).  

This is also true if parents have high expectations and perceptions of their child living with Autism.  This is a lesson that I learned personally.  When my son was first diagnosed with Autism and placed in a self-contained special education class at three years old, it became my goal that he would be placed in a regular education classroom by the time he entered first grade.  After the diagnosis, he started speech therapy and occupational therapy with that goal in mind.  He made steady progress with the additional support.  He moved from non-verbal to verbal and it became clear that he was cognitively gifted.  However, there were several major behaviors that were negatively impacting his ability to move into in a regular education classroom.  

At the end of his five-year-old Kindergarten year, his special education team decided that he was ready to enter a regular education first-grade class. I was elated.  However, as the year started, my son began to regress behaviorally and I was faced with the decision of placing him back in a special education self-contained class.  It was during these first few months of the goal that I had imposed on him, that I realized that I was going to have to let go of my perceptions and preconceived notions and do what was best for my son.  This meant that although he was academically gifted, he would need to be placed in a special education class that could possibly neglect his academic needs in order to focus on his behavioral needs.  By the time I was invited to discuss his placement, I realized that his current setting was not the right one for him and I was open to doing whatever needed to be done to help my child be successful.  

Whether my son displayed academic genius or not, focusing on developing his basic skills, social-emotional health, and behaviors is more important than his perceived academic giftedness.  This is best practice, although it can be difficult. If a parent is harboring a stereotype of their child being a genius, then they may be setting the bar too high for their child to reach (Notbohm, 2019).  This expectation of genius based on a parent’s perception of their child could lead to the child experiencing “feelings of inadequacy” and set them up for failure (Notbohm, 2019).   These feelings of inadequacy are particularly harmful because neither the parent nor the child truly knows what the child is capable of (Notbohm, 2019).   

Another drawback to expecting genius for children living with Autism is that parents may focus on this perception and not focus on developing the other skills that the child may be lacking (Notbohm, 2019).  Neglecting skills that the child needs to be successful such as developing their social skills, soft skills, or independent living skills and solely focusing on the child’s genius would be to the detriment of the child.  Notbohm (2019) states that “genius doesn’t guarantee independence, productivity, or satisfaction in life”.  Although it is important for parents to focus on the child’s cognitive development, it is just as important for them to focus on the characteristics that will help them live lives that are as independent, productive, and satisfying as possible.   

The genius perception should not be pursued blindly and exclusively to the detriment of the other skills that the child needs.  When faced with the choice between a child’s perceived genius and the responsibility of teaching a child to be independent, the answer should first be to make sure that your child has some way to communicate with the world around them and works toward developing their social thinking and interaction skills.  The inability to communicate, whether it is verbally using typical language or echolalia or whether it is non-verbally through sign language or using a technology assisted device, means that the child’s needs will not be met and he or she will be continually frustrated and will compensate for this (Notbohm, 2019).  The inability to appropriately interact with people socially could also lead to continual frustration due to the isolation that it may cause.  Although focusing on the child’s cognitive development is important, providing opportunities for students to develop their communication and social skills is important as well.

  In order to ensure that children living with special needs, in particular Autism, have the best opportunity to develop solutions for any communication delays, sensory processing challenges, or social interaction challenges, parents and other stakeholders in the child’s life should sit down with a designated IEP team at the child’s educational organization.  This team is essential in ensuring that all of the child’s needs are met in his or her educational setting. This team is especially important to a student in an inclusion setting because it can be easy for the student’s needs to be overlooked.  

The parent’s role on the team is to advocate for their child’s needs and to ensure that any perceptions from the other team members don’t negatively affect the child.  This is important because “when people use their own experienced to form opinions on how far they can go; they close the door”. (Notbohm, 2019).  If a teacher is new to the concept of inclusion or does not have the needed training, then they may have some perceptions that will limit the child.  It is important that the parent center the work that the team does around the voice of their child and his or her success.  

Another strategy that a parent can use to provide their child with the support that they need is to not focus on the perception of his or her “breakthrough greatness” or any perceived advanced academic gift, but to focus on the child’s actual strengths and weaknesses (Notbohm, 2019).  Focusing on the child’s actual strengths and weaknesses and providing any known strategies, keeps the child’s voice and needs at the center of the stakeholders’ work.  This is helpful in the Inclusion setting because it gives the Inclusion teacher effective strategies that can be used in the classroom immediately, rather than finding strategies through trial and error.  An example of this is when introducing her son, Notbohm (2019) “never referred to him as autistic, but rather she shared a few communication tactics and accommodations that would give him the best shot at success in each environment”.   She would ask people to speak to her son directly in literal terms without using slang or figures of speech such as metaphors or sarcasm (Notbohm, 2019).  As a parent knowing the strengths and weaknesses of your child that is living with Autism and sharing them with the other stakeholders in his or her life is essential to his or her success.  As Notbohm (2019) states “Autism itself is not awful, not understanding it, not having the people around you that understand it, not getting the help that is out there for your child…that can be awful.”  

Another strategy that parents should embrace and share with others that come into contact with his or her child is to meet the child where he or she is.  As discussed earlier placing expectations that are too high on a child with Autism can lead to feelings of inadequacy.  This includes embracing any skills that they may have or that may develop over time.  Notbohm (2019) talks about how urgent she was to have her child communicate in the same manner as typical children, so much so that she didn’t want him to use echolalia which was his dominant form of communication. When she realized that taking away the echolalia would take away approximately 90% of his speech, she realized that it would mean that his needs would not be met and decided to let his speech develop on its own timeline (Notbohm, 2019). I also experienced a similar situation in my desire to have my son placed in a general education classroom; instead of being content with the progress that he was making, my expectations forced him into a situation for which he was not ready.   This was harmful in the long run and caused him to regress in many areas. 

Centering the stakeholders in the life of a child with Autism around his or her individual voice, simultaneously focusing on the development of their communication skills, life skills, and academic skills, focusing on their concrete strengths and weaknesses, and meeting them where they are strategies that parents of children with Autism can employ to change the perceptions of the people around them.  These strategies are especially helpful in the Inclusion setting because it allows the child to grow at their own pace.  Changing the perceptions of those around them are important in order to change the way that the world views people living with Autism.  When people use their own perceptions and experiences to form opinions on how far people living with Autism go, they close the door of opportunity for them (Notbohm, 2019).