Recently, I have conducted an interview with a parent with a child of a disability.  While interviewing with the parent, I was interested in getting further insight about my inquiry through this interview.   Here is a few excerpts from an essay I wrote post to this particular interview.

I interviewed a mother that has a daughter with Autism.  The child is now nineteen years of age and has graduated high school.  When beginning the interview, I wanted to learn about her daughter’s personality.   What are her strengths?  What is she interested in?  I was interested to know of her child’s personality.  The parent began by informing me that her daughter is “extremely independent, she remembers absolutely everything and has a big heart.”  As a future educator, I feel it is important for me to gain an understanding of the child’s temperament, for this will help me to building a trusting relationship with the student. 

            Building upon what I have been learning through the content of this course, I was curious to know what kind of support the child as well as the parent had.  It was very apparent to me through discussing support that this family had a lot of support internally and externally.  “XXXX is very close with myself, her father and two brothers.  We also have a lot of support from her grandparents, aunts, uncles, and cousins.”  For children with disabilities, having support from family is especially important.  She also shared with me that a Para-professional has been working with XXXX and her family for the last seven years.  The mother didn’t expand much on what the Para-professional does for the child and her family, but just knowing that they have an outside source working with the XXXX and her family seems as if it would be very beneficial.

I then began asking questions about the history of her child, before XXXX was diagnosed with Autism.  Prior to the diagnosis, the mother was very shocked when her child was diagnosed.  XXXX was the only child at the time, being the mother’s first born, she said that she began to walk early and was very independent from the beginning.  When XXXX was born, they had just moved away so the mother did not recognize any social deficiencies.  “We didn’t realize anything was wrong, until she lost what little speech she had, in fact, XXXX was in a video that described how well she was developing for her age.  When her speech did not come as it was supposed to, we finally made an appointment and had her see a psychologist.” The mother was very upset with hearing that her child was being diagnosed with Autism, “my heart sank.”  She had no knowledge of Autism; she only heard about it in a movie and was not aware of how broad the spectrum was.  “I was devastated, I cried for weeks.” 

As I sat talking with the mother, my heart went out to her.  I know from my studies, that parents with children with disabilities are not out looking for sympathy, but I could understand how hearing that your child has some kind of disability could be heart wrenching.  She also informed me that this took place in the year of 1995, so XXXX was not diagnosed with Autism right away for this was something that was still fairly new.  “XXXX was first diagnosed with Pervasive Development Delay in which I don’t even think they use that any more.”  XXXX was diagnosed at two and a half years old; she was first taken to a speech therapist first and then referred to a psychologist.   I, myself, have only little knowledge about Autism and just am aware of the broad spectrum.  I do know that this is a disability still under research so I can imagine the frustration the family may have went through since not much was known about this disability.

As the interview continued, she began to tell me how her family is very supportive now, but when it all began, she had very little support.  “My parents were in denial about XXXX’s diagnosis, so there was no support there.  My in-laws were very good but we lived in Colorado at the time and did not have a core group of friends.”  I was very shocked to hear this being when we first began talking it seemed as if there was so much support from her family.  How does one find support if the closest people to you such as your parents, the child’s grandparents, are in complete denial about your child’s disability?  I could only imagine how rough that could have been for the mother.

Since I am a future educator, I was very interested to hear about XXXX school experiences.  The mother was very please with many of XXXX’s teachers and other professionals at school.  “I did not make excuses for XXXX’s behavior, if she did something wrong at school, she got into trouble for it at home, I always followed through.”  The mother also shared with me that she was very involved in XXXX’s education.  “I always made sure the school was meeting my child’s needs.”  As a parent, “if you do not stay on top of what your child needs, no one else will.”  I found that to be a very strong statement as I found some truth in that.  The mother works in a public school herself and she felt from her experiences that some schools will give little to no effort in meeting children the needs of children with special needs.  “I had to fight for an aide and I had to fight for XXXX to be able to participate in things that she was not capable of doing.  I also had to fight to make sure some, not all, teachers did their jobs.”  This was hard for me to hear, that there are educators that do not provide for children like they should.  The mother also discussed that she did not feel that parents are aware of their rights as parents and should fight for their children no matter what.

This was a parent who was very strong willed, as she described herself, “a hands on mom.”  There was constant communication between her and the school at all times, she said she even “sat in through XXXX’s classes and made sure I knew everything that was going on and made sure her IEP was followed.”  From this statement, I could tell that she was very involved with her child’s public school experience, “I am the only real advocate for my child.”  As we continued talking, school budgeting was brought up.  The mother felt the schools were more concerned with their budgets rather than meeting the needs of special children.  For the mother as well as myself, find that very frustrating.  I am in total agreement with her on that statement, as I have seen this issue in my Kindergarten practicum.  A child in my classroom is in need of an aide but because the school is on a budget, they cannot afford this.  She also stated that her child had been on a waiting list for years to receive special services.

In closing the interview, I asked the mother a few questions concerning the goals for her child’s future, advice she would pass on to other parents with children with Autism, and simply just anything else she felt she should share with me about her experiences.  Her main goal for XXXX was “to become a contributing member of society.”  As of right now, XXXX is on working on job training at a school now and the mother hopes that by XXXX’s mid twenties, she can have an assisted living arrangement.  Her advice to other parents was, “do not make excuses for their behavior, even if they are high functioning like my child.  We are the only ones that can help our children survive in society.”  This is the mindset I feel all children should have regarding their children.  All children will one day be active citizens in society.   “I treat her just like my other two children, she will always be different, but it has made her more socially acceptable to her peers.”  In discussing XXXX’s independence, “she has to be able to know how to do some things herself.”  Her special advice to me as a future educator was “enjoy every moment, they have such a unique view of the world, never feel bad for losing patience, no one is perfect.”  This is a quote that will stick with me forever.