Educators need to be able to empathize with families and understand their feelings in order to best support them. Families are unique and face a variety challenges that are specific to them. I found an article written by a parent of a child diagnosed with disabilities. The article brings to light the emotions, stressors, and feelings experienced by this parent. I felt the article was heart- warming and allowed me to gain an appreciation for what this family is experiencing. Getting to know the family on a more personal level will increase the success of collaborative efforts and will build trusting relationships. It’s important to recognize the child and family as just that, a child and a family, not as a disability.

 http://www.realsimple.com/work-life/life-strategies/parenting-child-disability-00000000010773/index.html

Parenting a Child with a Disability by Judith Scott

We discussed collaborating and supporting families of children diagnosed with disabilities in class this week. In order to do this, teachers must be knowledgeable of the disability and the resources available. I found this site, http://womenshealth.gov/illnesses-disabilities/parenting/parenting-child-with-disability.cfm. It has information about parenting, programs and services, interventions, education, laws, legal rights, and organizations. There are links to all these resources. This site along with the NICHCY would be valuable resources for parents and educators.

I interviewed a friend for our assignment and we discussed education. Her son is diagnosed with Autism and is in the second grade. She said that one of her biggest challenges and worries is transitioning to a new classroom and teacher each year (our chapter readings focused on this). She said that every year she feels like they are starting over and she has to “spell out” everything for the new teacher. It doesn’t and shouldn’t have to be that way. Teachers need to collaborate and make plans well in advance to ensure a smooth transition. I would allow the student to frequently visit the new teacher and classroom, if necessary, before the end of the year. I would want to do everything I could for the family and child to make it a positive and easy experience. We need to be mindful of the child’s and family’s needs throughout the entire school year and into the following year.

I referred to Chapter 5 of our text for this post because it focuses on providing coping and stress supports for families of children with disabilities. This chapter should be read by all educators because it highlights the benefits for effective collaboration and the need for teachers to be informed of resources available to families.  The text states that, “families of children with disabilities who access various support services – personal and professional – are able to cope more successfully with stress.” (pg. 115) Educators need to be able to link families to school related and community services that will increase the likelihood of the family feeling some relief from stress and the child achieving their goals. Collaboration with all families is essential to the development and growth of children. It is even more critical when the child is diagnosed with a disability. For this reason, educators must empathize with the family; understand the family dynamic and culture, have in-depth knowledge of the disability, and know what resources are available.

Fiedler C.R., Simpson, R.L., & Clark, D.M. Parents and Families of Children with Disabilities.       (2007). Pearson. Upper Saddle River: NJ.

I visited my preschool mentor teacher the other day and our discussion got me thinking. The preschool is designed for children with disabilities. When I was there it was challenging at times. There were several students with severe disabilities. As we were talking about some of the children that were in the class last year and how they are doing, my thoughts turned to one particular student. He was diagnosed with severe emotional and behavioral disabilities. I found out that he did not transition to a general education kindergarten classroom. His parents are struggling to give him the support he needs along with his two siblings. What got me thinking was that this young boy was adopted as an infant by this couple. They knew at the time that the birth mother did use drugs when she was pregnant but I don’t know if they or anyone could have expected or predicted the extent of his disabilities. Does this cause even greater stress? Some may adopt a child knowing that there may be disabilities present but what if you are unaware when you adopt?

There was a wealth of information about adopting children with disabilities and/or how to cope with having adopted a child with a disability online. The NICHCY had an 8 page resource guide specifically for foster or adoptive families.  The NICHCY provides links to more resources, information, and organizations that families can utilize. I found the information to be thorough and very informative.

I plan on looking into this topic a bit more. I did not find any research studies during my initial search but I will continue to explore.

The NICHCY site is a wonderful resource for families and educators. I will use this site in the future to assist with finding resources, support groups, organizations, and information. It would be beneficial to visit this site.

http://nichcy.org

I found a study conducted by researchers at the Texas A&M University Center on Disability and Development that examined challenges faced by parents of children with disabilities. The data collected from seven focus groups with 40 parents each revealed common themes. The parents identified that a “fundamental lack of match between their needs and the resources and supports available to meet those needs. This lack of a match seems to be one of the greatest impediments to optimal wellbeing for these parents.” Parents in the study did not identify child-specific disabilities as the most significant challenge. They also did not describe their experience of raising a child with a disability as a burden. The findings of the study confirmed the need for family-centered services.

This study is interesting because it supports the information found in our text and the significance of family-centered practice. The parents in the study felt that not having the necessary resources and supports to assist with caring for their child was a major cause of stress. This study highlights the important role we have as educators in supporting families and being informed about the resources available to them.

Texas A&M University (2010, June 24). Researchers call for Support for Parents of Children

      With Disabilities. ScienceDaily. Retrieved May 17, 2012, from http://www.sciencedaily.com

I found an article that I thought was interesting and decided to share it. In the article, Dr. Bankar examines the important role of parents in the rehabilitation process of a child with a disability. He studied factors that influence and increase the success of children with disabilities. He states that “Parental acceptance and parental involvement for the child with disability can be effective only if parents and (the most importantly) the rehabilitation professionals would look after the following issues in the rehabilitation process.”

1.    Stress of parents of child with disability

2.    Factors affecting parental acceptance and involvement

3.    Facilitating parental acceptance and involvement in rehabilitation process

Basically, parents must accept their child’s disability and be committed and involved in order for the child to experience success. This may seem so simple but if a parent is overwhelmed or cannot cope, it will prove difficult to meet the needs of the child. Parents and families need an outlet to express their feelings and emotions to help manage stress. Most of what I have read and found confirms that parents and families need to take time for themselves and find ways to relieve the pressures, stress, and possible demands of having a child with a disability.

Role of Parental Acceptance and Involvement in the Rehabilitation Process of Child with Disability. Bankar, Neelkanth // Golden Research Thoughts; Jan2012, Vol. 2 Issue 1, Special section p1 b

While inquiring into stress and parenting a child with a disability I found an article about the dilemmas of genetic testing. I did not contemplate this as a stressor when I began this blog but it most definitely should be considered as one. If a genetic screening comes back with a positive result, parents are forced to make decisions about carrying the pregnancy to full term. Parents are faced with a stressful, possibly life altering decision. Expectant mothers do not have to agree to genetic testing but it is recommended by most obstetricians. The article I read was written by Shelley Burtt who has taught at Yale University and the London School of Economics and Political Science. She is also the author of Virtue Transformed (Cambridge, 1992). Burtt gave birth to a son diagnosed with Down’s Syndrome and can appreciate the challenges of parenting a child with a disability. She stated that, “Parenting this child forced us to reconsider our conception of what qualities and capacities made life worth living; the joy my son clearly took in life and the joy he gave us compelled such a re-evaluation.” This article made me stop and think about the magnitude of deciding, what constitutes a life worth living and who should decide? I did have prenatal screenings with both of my pregnancies. Regardless of the results, I would not have terminated my pregnancies. I wanted the tests in order to be better prepared and informed. If a positive result occurred I wanted to be ready to fully support and take care of my child.

“Genetic testing gives us the tools to choose in advance against certain sorts of lives. How are these tools to be used? What sort of lives are worth living?” (Burtt, 2012)

Which Babies? Burtt, Shelley // Tikkun; Jan/Feb2001, Vol. 16 Issue 1, p45

I spoke with Jim Carter, CEO of Child Focus, Inc. about stressors parents of a child with a disability encounter. He has worked in the mental health profession for over 30 years and is a wonderful resource. I simply asked him what major stressors he has observed over the years. He stated that one “universally chronic” stressor is the overriding concern about what will happen in the future. How will their child manage when they are either unable to take care of them anymore or after they are gone? Carter said that this is a source of stress throughout the entire time. He also mentioned that families worry about having enough money saved and set aside to pay for all of the child’s expenses for their whole life. Next, Carter talked about feelings of blame, blaming oneself, blaming your spouse for the disability. Eventually this may cause couples to be at odds. Along with this blame, parents may grieve the “death of the perfect child”. Families go through a grieving process and lament the loss of having a “typical” child. Families may have to adjust their dreams of the future and create new hopes and dreams. Lastly he discussed managing having a child with a disability and other children without. The sibling without disabilities may feel forgotten, less important, develop emotional problems, and become bitter. Parents have to find a way to find a balance and that can be extremely challenging and stressful. Child Focus, Inc. helps parents, siblings, and families cope and manage these and other stressors. (This is an abbreviation of our conversation.)

Child Focus, Inc. (CFI) directly serves over 5,000 youth, ages prenatal to young adulthood annually. Child Focus also serves over 20,000 people when including the families of youth served, prevention, training and other community services including Crisis Hotline and Crisis Response Team. A private, not-for-profit 501(c)(3) agency, its 745 volunteers, 242 staff and 30 foster families help provide a broad range of early learning, mental health, school, foster care and community services. With an agency budget of over $15 million dollars, the spectrum of services includes Head Start and early learning programs for children ages 0-5, parenting education and support, partial hospitalization, mental health prevention and support services in schools, foster care, independent living and Life Skills preparation, family stability, outpatient individual, family and group therapy, diagnostic testing, psychiatric services, management of a county-wide 24-hour crisis hotline (528-SAVE), community programs and professional training. CFI provides these services in over 70 locations and in hundreds of homes in Clermont County and surrounding southwest Ohio communities, including an outpatient mental health office in Brown County and foster homes in Clermont, Hamilton, Brown and Warren counties. In addition to serving the Greater Cincinnati area, Child Focus community programs and trainings, including school violence and bullying prevention, reach tri-state and national markets.

http://www.child-focus.org/

This week I visited the Union Township Branch of the Clermont County library to see what books I could find on stress and parenting a child with a disability. I wanted to experience what the library had to offer and to decide if it would be a valuable resource to offer to parents. I first tried using the keyword, “disabilities” for my search. I was provided with 813 results. A bit overwhelming, so I narrowed my search to “parenting a child with a disability” and was provided with 3963 results. Worse!  As I scrolled through the 80 pages, I soon discovered that many of the book listings did not have anything to do with my search. I did find books that met my needs but it would take a considerable amount of time to look through the catalog. I asked a librarian about my inquiry and she stated that it may be beneficial to have something specific in mind or an author when searching such a broad topic. I did find books pertaining to a specific disability. Searching in that manner may be a better way for parents. Books addressing disabilities written for children are also available at the library. It may benefit siblings to check out some of these books. I do feel the public library is a good resource for families but they should be prepared to do some research if they do not have something specific in mind.

I decided to look on Amazon, just to see what I could find searching in a similar way. I did feel I was a little less overwhelmed. Some of the books I found at Amazon were available at the library. Parents could search online and then check with their local library for availability.

My reason for this inquiry was to be better prepared to support parents and families. What books would or could I recommend? Where would I tell families to get the book? I think it would be beneficial as an educator to start a list of books, magazines, websites, peer journals, organizations, support groups, etc. that you discover. The list could include anything that has been recommended by families, educators, support staff, school psychologists. Having a readily available list of resources may help reduce stress in families.