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.