In ending my blogging experience, I begin to reflect on what I have learned through the blogging process.  We were instructed to begin with inquiry questions based on our own interest and then were responsible for finding our own research to build upon our inquiries.  Through research, our textbook, interviews, powerpoints and fellow colleagues, I have begun to internalize my role as a teacher in families with children with disabilities.  Here is an excerpt from a fellow classmate's blog that had a very similar inquiry to my own:

“…it is not the child’s disability that handicaps and disintegrates families; it is the way they react to it and to each other” (Dickman & Gordon, 1985, p. 109).

Today’s parents face a world of challenges with everything from keeping themselves healthy and happy to providing their children a safe environment that fosters the physical, emotional and social growth of their children in today’s society. Sometimes the everyday demands of life seem too great to overcome and families will experience stress and/or crisis as they try to survive. Often families will fall apart or choose to split up the family unit in response to money struggles, addictions, abuse, health, or just plain unhappiness. It is no surprise then to learn that having a child with a disability can also drive families apart or into a state of chronic stress or crisis. This does not have to be the case. This article addresses not only how having a child with a disability can impact the family system, but also how families can use their circumstances to become a more resilient and healthy family. 

Site that expands on the above topic:http://www.ncaonline.org/monographs/17family.shtml


As a future educator, it is important for me to understand children's backgrounds.  In doing so, I must assist to provide the families with my own professional knowledge to make them feel comfortable with their child in my classroom.  Through the information I have learned through this blogging experience, I have found it is important I research the unknown to fulfill understandings in which I am unfamiliar.

I found a video of an interview with a Physician who discusses the negative impact stress of parents can have on their children.  This interview does not have a sole focus on stress of parents with children with disabilities, but discusses the general concept of stress and it's effect it can have on the parent/child relationship.  What I found the most interesting about this video is that the Physician believes that stress and lead to disabilities.  Can parental stress really lead to disabilities?  This controversial statement has lead me to think about my inquiry in a different aspect.  He states that the development of the brain depends on the psychological and social environment, that the disabilities begin to form through coping mechanisms of the child.  He discusses how his theory relates to research he has encountered and compares it to science.  With all different types of disabilities being diagnosed to children, he feels there is something going on within society.  I found this interview to be very interesting and really thought provoking.

http://www.youtube.com/watch?v=Rof2UQfzUtY

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. 

I have came to be familiar that a stress reducer for parents with children with disabilities could be the use of a peer support group.  Personally, I do not have a child with a disability, but I do experience stress and sometimes I find myself venting to my roommates who are going through similar experiences as myself.  It's also helpful to hear advice as well as to hear the experiences of others to greater grasp how you will handle stress.  I feel peer support groups would definitely be something helpful for most parents.  A paper by Eugene Edgar further expanded my knowledge on peer support groups for parents with children with disabilities.  Within his first couple of paragraphs, he really sums up what these parents may be experiencing.  "The feelings of grief, sadness, anger, frustration, helplessness, and often incompetence lead to a sense of lack of self-worth.  Interpersonal reactions among family members often deteriorate.  Relatives, friends, neighbors often simply do not know how to respond to the situation and withdraw."  His main point is peers provide family members with realistic empathy, an extremely important ingredient in reducin stress as well as sources of information.  Peer support groups meet the needs of parents are met within providing information, emotional support, and having connections with system components.  It is reccommended that theses systems be planned, supported by a formal agency, and maintained over time.  For more information : http://www.eric.ed.gov.proxy.libraries.uc.edu/PDFS/ED242174.pdf

In researching the stress that parents of children with disabilities go through, I found an article based off of a research study of evaluating stress levels of parents of children with disabilities.  Research has shown that the interactions of parents with their children with disabilities can have a profound impact on the progress that a child makes in his or her therapeutic or educational program.  With that being said, this article argues that an important component of the screening and assessment process is a measure of the stress level experienced by the parents providing an overview of the different assessment instruments currently used to evaluate stress in parents of children with disabilities, making recommendations.
The concept of stress can be broken down into four domains; the stressor, strain, coping resources, and coping strategies.  Some coping strategies include attending parent support groups, hiring a care working, or just simply discussing fears and concerns with a friend or family member.  These are all strategies I have been familiarized with through our textbook.  What this article brought my attention to was the number of assessment instruments used to measure and quantify stress.  Each of the four domain of stress is assessed separately or in combination to provide information about the amount of stress a parent is experiencing and his or her reaction to that stress.  This will then assist in determining the type of intervention and services that would be the most beneficial.
Retrieved from:
http://search.proquest.com.proxy.libraries.uc.edu/docview/201221028/fulltextPDF?accountid=2909

Thus far, I feel as if I have almost researched the negative of having stress for caring for a child with a disability.  In a sense, I feel as if i have almost made myself grow sympathy for families of children with disabilities.  But this is not what parents are looking for from their child's classroom teacher.  Are there any positives in dealing with children with disabilities?  What can parents do to make it a positive experience?  How can I assist parents in reducing their stress levels?  Although I know having a child with a disability can have exceptionally rewarding experiences, all I feel I hear about is the negative stress parents deal with.  What can parents do to reduce their stress?  Parents must nurture themselves and meet their own needs as well as the needs of the child.  How can they do that?  Just knowing that I handle my own stress in different ways, there must be different ways in which these parents handle their own.  One way I have learned that seems like it could be a high stress reduce is self-care.

According to an article I found, self-care is the most effective way to reduce caregiver burnout and create a nurturing, loving environment.  Constantly, parents are sacrificing their own needs in order to prioritize their child's needs.  If parents make a plan to meet their own needs, they will be better equipped to recognize the unmet needs of their children.  This article discusses six categories of basic needs such as physical needs, emotional needs, social needs, intellectual needs, spirituality needs, and creativity needs.

http://www.disaboom.com/children-with-disabilities/self-care-why-parents-of-children-with-disabilities-must-nurture-themselves 

In Chapter 4 of Parents and Families of Children with Disabilities, in regards to deepening my knowledge on how families cope with the stress of having a child with a disability, I never put into thought of how the siblings of the child dealt with stress.  My focus before was solely on the parents, but siblings are too a part of the family.  In what ways are they effected?  In what ways do they cope?  Are they as accepting or resilient of their brother/sister with the disability?  In spite of their heterogeneity, including characteristics, needs, interests, and capacity to be involved in supporting family members with special needs, members of a family unit are interrelated in myriad ways.  In this connection, events that affect one member of a family also impact others in the family (Carter & McGoldrich, 1980).  Siblings seemed to be overlooked, when they too are affected.  As a professionals, we must respond to the needs of the siblings of children with disabilities as well.  I've learned that one must provide information to the child about exceptionalities, including the disability that affects their brother/sister, observe and discuss with school personnel the educational program of siblings with a disability, including methods, procedures, curricula, and supports, and communicate with community professionals as well as other siblings of students with disabilities, and individualized opportunities and decision-making roles related to participating in the educational and home-life support of siblings with disabilites (Fiedler, Simpson, & Clark, 2007).

http://www.ccakids.com/Articles/Living%20With%20A%20Sibling%20Who%20Has%20A%20Disability.pdf
This article builds on these concepts in terms of living with a sibling with a disability.