For my last post, I decided to share the site http://www.goodjobbuddy.org/Good-Job-Buddy. Sarah L. is friends with this family and she suggested that I look at it. It is a wonderful site dedicated to their son Isaac who is diagnosed with Down Syndrome. Our focus this quarter has been on family-centered practice and developing an understanding and appreciation of the diverse needs that families possess. This site offers a family’s perspective and personal story. I was moved by what the family chronicles and found the site to be extremely informative. Everyone should take some time and visit the site as it exemplifies the importance of getting to know the families we will be working and collaborating with.

I have learned so much this quarter about appreciating families and their unique situations and how this increases the child’s opportunity to achieve success. I will refer to the many resources I discovered during my inquiry. I enjoyed reading many other blogs and found helpful information and resources that I will also utilize.

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.

I had the rare opportunity to sit and watch mindless television the other day when I saw that Holly Robinson Peete (a celebrity) was going to be interviewed. Her son is diagnosed with autism. She spoke a lot about how unique each family and person’s situation is and how her family copes with her son’s disability. Something that struck me was her worry about the future. She said that discussions about autism and disabilities usually focus on children. Her son is now fourteen and her worries and stress are beginning to change. Will her son transition into being a happy adult with a fulfilling life that is able to contribute to society? What will happen when they are gone? Who will take care of him? When I decided to inquire about stress and parenting a child with a disability, I really didn’t consider all of this but the child does eventually grow up. Then what? This type of transition, as we read in our text, is a major stress factor.

I pulled up her website dedicated to autism and Parkinson’s disease, http://www.hollyrod.org/. The site offered an abundance of information and referenced the NICHY, IDEA, and Autism Speaks. I looked at the Transition Tool Kit designed by Autism Speaks. It is a comprehensive, step-by-step guide for families. Families need a transition plan to help manage stress and to ensure that their child will have a smooth transition into adulthood. I am posting an excerpt from Autism Speaks: Autism in the Workplace demonstrating why this transition can be so stressful for families;

“Unemployment and underemployment remain challenges for people with autism and other disabilities. A 2004 Louis Harris Poll found that only 38% of individuals with a disability were employed, as compared to 78% of those who did not have a disability. It is estimated that more than a quarter of adults with a disability live in poverty, and more than seventy-five percent earn less than $20,000 per year (Bowe, 2006). Yet research has shown that employers tend to be highly satisfied with the productivity and dependability of their employees who have disabilities.”

What startling statistics! I know we are elementary education majors but I feel this is something to be aware of as educators and members of society. I would recommend looking at the website and visiting the many links the site offers.

I was looking for peer reviewed journals and articles in the UC Library and came across a research article that shared interviews that were conducted with fifteen parents and two grandparents of children with developmental disabilities. The interviews concentrated on the specific ways they made positive adaptions to their lives. I thought that this article was a good source for parents and families to refer to when attempting to cope with stress. Common themes found by Maul and Singer included:

1. Lost opportunities replaced by new opportunities: families choose to look at changes as new opportunities that are different but good and satisfying.

2. The family as a team: the whole family works together to create a “team”.

3. Time adaptations: slow down general pace of life, avoid unscheduled time, adjust work schedules, need for advanced planning.

4. The idiosyncratic nature of family accommodations: family – specific accommodations and individualized approaches.

5. Insistence on normalcy with a resistance to stigma: belief that the sacrifices they made were not much different from what parents do for any child.

All of the families also stated that in order to find what worked for their family and child they used trial and error. The article listed examples of  family-generated accommodations made for children with developmental disabilities. Some of the issues listed are behavior difficulties, family fun, pets, sleeping at night, and work with examples of accommodations that can be made. (This is a brief overview of the article.)

As I inquire into the topic of stress and parenting a child with a disability, I am finding that coping strategies, adaptations, and accommodations are very personal. There is a wide range of family dynamics, needs, and disabilities. Families need support in finding what works best for their family situation.

Maul, C. A., & Singer, G. H. S. (2009). "Just good different things". Topics in Early Childhood Special Education, 29(3), 155-170. doi:10.1177/0271121408328516

While inquiring online for my last post, I found the website The National Center on Accessibility (NCA), http://www.ncaonline.org/. “The National Center on Accessibility promotes access and inclusion for people with disabilities in parks, recreation and tourism.” It is an awesome resource for families and individuals with disabilities. When I pulled up the link  Access A to Z, it allowed me to look at information from beaches, museums, picnic areas, to golf course that are accessible to all. The site offers an abundance of helpful tips and information for families and individuals.

My blog’s focus is parenting a child with a disability and stressors that they may experience. I can’t imagine wanting to go somewhere or do something but being worried that there won’t be the necessary accommodations for your child. I believe that the NCA site could help families with the stress of vacationing, weekend getaways, and recreational possibilities. I would definitely recommend this site to families.  

Traveling with my family, we have to make allowances for my daughter’s allergies. She is limited on what and where she can eat. We love to go to Disney Florida. Disney goes out of their way to make accommodations for individuals with special needs and disabilities. All of the restaurants affiliated with Disney that we have visited have made my daughter feel welcome. The chef comes out and speaks to us and ensures us that every precaution will be taken to prevent cross contamination. The restaurants at the parks provide a book that lists all the ingredients in their food and you can make requests. Snack bars also offer fresh fruit, which allows Kirsten to get a treat with her brother (he doesn’t have allergies). I may sound like a spokesperson for Disney but they do a wonderful job!

When inquiring about stressors placed on parents when coping with having a child with a disability, I found the issue of divorce to be a subject of debate. There is conflicting research about whether marriages are more likely to end in divorce due to the increased stress of having a child with a disability. I looked at numerous websites and articles and could not find a definitive answer. Most research indicated that the divorce rate is higher for couples parenting a child with a disability but the rate varied depending on the severity of and type of disability. Some possible increased strains on the marriage include blame, guilt, decreased time spent together in and out of the home, a breakdown in communication, differing coping strategies, opinions, and expectations, and the sharing of responsibilities. I wonder if the added stress may also exacerbate underlying issues that already existed in the marriage.

In contrast to studies about the increase of divorce and stress, many studies also highlighted that parenting a child with a disability created a closer bond between parents. Parents felt supported by their spouse and believed there to be a mutual understanding shared between them. In an article, found at http://www.disaboom.com/children-with-disabilities/for-better-or-worse-and-kids-with-disabilities, Karen Putz discusses strategies to keeping a marriage strong developed by Dr. Laura Marshak co-author of Married with Special-Needs Children. Marshak believes that parents have to make a decision to protect their marriage. In her book she offers advice to parents about how to work on marital issues while juggling the demands of raising a child with a developmental disability, serious medical condition, or mental illness.

I am referencing several of the websites and articles I found while inquiring into this topic. They provide information in regards to research studies conducted, where couples can find support, and helpful advice to maintaining a healthy marriage.

http://parent2parentnetwork.org/

http://voices.washingtonpost.com/checkup/2010/05/childs_autism_doesnt_raise_par.html
http://drgrcevich.wordpress.com/2011/04/12/special-needs-and-divorce-what-does-the-data-say/

http://blogs.wsj.com/juggle/2008/11/25/does-having-a-special-needs-child-strain-marriage/

http://www.disabilityscoop.com/2010/08/06/autism-parents-divorce/9680/

As I began my inquiry I thought I would look at how parents may feel when their child is first diagnosed with a disability and where they can go for information and support. I found a News Digest article published by The National Information Center for Children and Youth with Disabilities (NICHCY) that addresses what parents experience when they learn that their child has a disability. The author, Patricia McGill Smith is a parent of a child with a disability and she draws on her personal experiences and research to offer advice and support. As a parent I know the excitement, joy, nerves, dreams, and hopes when you first have a child. How would you react to finding out that your child has a disability? The author discusses common reactions experienced by parents of children with disabilities. Some of these reactions include; denial, anger, grief, loss, fear, guilt, rejection, and confusion. It is small in comparison but when we discovered my daughter's allergies I worried that maybe I caused it because I didn't eat the right foods when I was pregnant. I was terrified to feed her anything but whole foods and I was really upset. My extended family had many questions and their own ideas about how to handle her allergies. It was overwhelming. Smith states that by working through these emotions and acceptance, is the beginning to finding the positives and blessings of having a child with a disability.

The article stresses the importance of seeking out support from your mate, family, significant other, other parents with children with disabilities, and to research any and all information available about the disability. The author discovered that speaking with parents that could relate to what she was experiencing and taking everything one day at a time she found hope. Smith highlights the importance of not going through the journey of having a child with a disability alone, staying informed, and accepting the journey with love.

http://nichcy.org/

nichcy.org/wp-content/uploads/docs/nd20.pdf

When deciding on a focus of inquiry for this blog, I thought about the stress parents experience on a daily basis and how these stressors may be magnified when your child is diagnosed with a disability. Though I can not fully relate, I can appreciate what these parents may go through. My daughter has severe allergies. She is allergic to dairy, eggs, peanuts, tree nuts, penicillin, most animals, and just about everything in the environment (grass, pollen, dust, etc). She has an Epi-Pen available at all times and wears a medical bracelet. She is a healthy, bright, athletic, funny, happy eleven year old and I know her allergies pale in comparison to what some children endure but her allergies are something I think about and make accommodations for every day. I have to make sure that wherever she goes she has something to eat (we call it "Kirsten Friendly" foods), her Epi-Pen, and that I trust the adult(s) she is with has an understanding of and is prepared to deal with her allergies. She will be starting middle school next year which brings added worry for me. The teachers don't know her, there are new students and staff that may not appreciate the severity of her allergies, and I have to schedule meetings with the school to discuss her medical and emergency plan. I have found advice, suggestions, recipes, and help from online resources, talking with other parents that have children with severe allergies, and books. Through this inquiry blog, I hope to learn about the stressors placed on parents having a child with a disability and the resources available to them to help them cope.