Parenting a Child with Asperger’s Syndrome and How it Affects Life
For the past 13 years, I’ve had the privilege to be a parent of an amazing, talented and beautiful girl named Hailey with who has Asperger’s Syndrome. Life with a child whom has a disability like hers can be very challenging, life changing, rewarding and a learning experience. I have two other daughters as well. They are ten and one years of age. My paper will focus on diagnosis, education, trials and tribulations; parenting and learning how to cope with a child who has Asperger’s Syndrome.
Diagnosis
It’s not very easy as a parent to hear your child has an autism spectrum disorder. On the other hand, after five years of neurologists, psychiatrists, and a psychologist, hearing the proper diagnosis of Asperger’s Syndrome at the age of nine was rewarding. When my daughter was four and in pre-school, her teacher told me she had a problem sitting still in her chair and focusing. I immediately brought her to a neurologist since ADD was on both sides of the family. That was the beginning to a roller coaster ride that’s been quite difficult, emotional and educational.
Hailey was previously diagnosed with ADD, ADHD, ODD, Bipolar Disorder, Sensory Processing Disorder; or combinations of them before being properly diagnosed with Asperger’s Syndrome. What are these disorders? Attention Deficit Disorder (ADD) “A syndrome, usually diagnosed in childhood, characterized by a persistent pattern of impulsiveness, a short attention span, and sometimes hyperactivity, and interfering especially with academic, occupational, and social performance.” (Farlex, 2004-2013)
Attention-Deficit Hyperactivity Disorder (ADHD) “A condition in which a person (usually a child) has an unusually high activity level and a short attention span. People with the disorder may act impulsively and may have learning and behavioral problems.” (Farlex, 2004-2013) Oppositional Defiant Disorder (ODD) “is defined by the Diagnostic and Statistical Manual of Mental Disorders, fourth edition (DSM-IV), as a recurring pattern of negative, hostile, disobedient, and defiant behavior in a child or adolescent, lasting for at least six months without serious violation of the basic rights of others. The incidence of ODD in the American population varies somewhat according to the sample studied; DSM-IV gives the rate as between 2-16% while the American Academy of Child and Adolescent Psychiatry (AACAP) gives a figure of 5%-15%, and a researcher at a children’s hospital gives a rate of 6-10%.” (Farlex, 2004-2013)
Bipolar Disorder “Bipolar disorder, formerly known as manic depression, is a mood disorder that causes radical emotional changes and mood swings, from manic, restless highs to depressive, listless lows. Most bipolar individuals experience alternating episodes of mania and depression.” (Farlex, 2004-2013) Sensory Processing Disorder ”A neurological disorder characterized by disruption in the processing and organization of sensory information by the central nervous system, characterized by impaired sensitivity to sensory input, motor control problems, unusually high or low activity levels, and emotional instability.” (Farlex, 2004-2013)
Asperger’s Syndrome “A pervasive developmental disorder, usually of childhood, characterized by impairments in social interactions and repetitive behavior patterns. (Medicine / Pathology) a form of autism in which the sufferer has limited but obsessive interests, and has difficulty relating to other people [named after Hans Asperger (20th century), Austrian physician who first described it]” (Farlex, 2004-2013)
When I changed to her final neurologist, whom was highly recommended, he was shocked her disorder was not previously clinically diagnosed. All of what I explained to him about her and her behaviors was nothing different than previously explained to all the other health care professionals.
Some of what I explained about Hailey was: she liked to flap her hands, she had certain things she would obsess over, certain textures or fabrics bothered her; foods had to look a certain way or she wouldn’t eat them, her temperament could be very challenging and more. When he told me she had an autism spectrum disorder called Asperger’s Syndrome, my heart sank; but I was relieved to finally know what was wrong with her. A checklist for Asperger’s Syndrome can be found at http://autism.lovetoknow.com/Aspergers_Checklist. The checklist gives you an idea of the criteria to receive a diagnosis for Asperger’s Syndrome.
“You must understand that people with Asperger’s don’t lack feelings; their brains just function in such a way that they have trouble accessing and expressing feelings to others in a traditional manner.” (Shore & Rastelli, 2006)
Education
Some children with a disability or classification usually receive an Individualized Education Program (IEP). The schools child study team gets involved in order to create an IEP for a student. “The IEP details the educational objectives for a particular child, as well as methods to obtain these objectives within the coming year. These goals should be clearly linked to the child’s strengths and weaknesses discovered during the evaluation process.” (Bruey, 2004)
The evaluation process is a series of tests which generally takes a couple of weeks to complete. The evaluation is done during normal school hours and the student is removed from his/her regular class and brought into another room for one on one tests. Upon evaluation completion, the student’s parent(s) is asked to come in for a meeting with the child study team. Of course the final say is completely up to the parent(s), the school can only give their opinion.
At the meeting, the evaluation findings are gone over and a determination is made to decide on the best course of action in order to help aid in a better education for the child.
The student can either stay in a regular mainstream class or be placed in a special education class. With regular mainstream class, which is taught by a general education teacher, there may be a teacher’s assistant or resource room needed depending on the student’s weakness/weaknesses. “General education teachers are trained to work within the mainstream classrooms. They work in both public and private settings and deliver the majority of education throughout the world. Their function is to teach a group of children the curriculum chosen by either the teacher or the school. Teachers have a tremendous responsibility because they have to meet the needs of a large number of students and often have little outside support to do so.” (Curtis, 2008)
A teacher’s assistant is there to help students who require additional instruction or attention during lesson. The assistant gives a more hands on help when needed by the student. Resource room, which can be taught by either a general or special education teacher, is a much smaller class size where the student is taken from his/her regular mainstream class and receives almost one on one help in a more specialized room setting. With resource classes, the school tries to collaborate and orchestrate them at the same time the student would be receiving the lesson if he/she would be in their regular mainstream class.
A special education class is taught by a special education teacher. “A special education teacher is a professional who has specialized in working with children with special needs. These teachers work directly with students, collaborate with general education teachers, and often manage a team of paraprofessionals who are providing services to a number of students in need. These teachers are specialists in working with such difficulties as reading delays, cognitive delays, or behavioral challenges. Special education teachers provide much of the instruction as mandated by the student’s special education individualized education plan (IEP).” (Curtis, 2008)
The difference between the two teachers is the special education teacher has received additional educational training in the field of special education over a general education teacher. A special education teacher will also have a higher degree in education over a general education teacher but maybe not always. In my humble opinion, I feel all teachers should be required to take a class to learn about behaviors and disabilities in general.
The reason I say that is with a personal experience, as well as other family and friends, there’s a lack of empathy from some teachers toward students who have a disability or classification and are in mainstream classes. Why is that? Could it be the teacher lacks the knowledge of behaviors or disabilities? That way maybe with a better understanding, certain students wouldn’t be treated as poorly as they are and the teacher could have a better understanding and handle on things.
I can associate that to an experience I had with Hailey in the first grade. The teacher felt my daughter was disruptive in class because she was unable to stay still and focus. Long story short, I knew where Hailey’s desk was from meeting her teacher on back to school night. I went to the school for the Halloween parade and classroom party.
At the end of the day, I went to move her desk back to where it belonged and Hailey said “mommy what are you doing? That’s where my desk belongs.” I sank and became pretty upset. Her teacher, rather than calling me, took it upon herself to ostracize my daughter by moving her to the front of the classroom facing the chalk board away from all the other students. That didn’t set very well with me. That was the beginning to an awful roller coaster ride, which I’ll explain under trials and tribulations.
I distinctly remember telling her teacher when I met her that if there’s any problems with Hailey to please let me know so I could take care of them. Clearly she didn’t understand that. Of course the school was contacted and Hailey was not placed in another class. This is the point in time when the awful roller coaster ride began.
I can’t say it’s only teachers who need proper education. I believe there are some people and parent(s) who do too. I know I did. It’s pretty unfair to an individual who can’t help but be the way they are and their parent(s) or teacher(s) do absolutely nothing about it. How can that help the individual? For that individual, how is it fair to be treated so unfairly?
I don’t believe it is. In some cases, I strongly believe that children who are not properly dealt with as a child and miss treated growing up don’t always turn out to be good people. They tend to grow up to become the abuser since they were bullied growing up or something even more severe. That’s just my personal humble opinion.
Trials and Tribulations