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Advice to Families with Disabled Children
September 8, 2011
Talent is insignificant. I know a lot of talented ruins. Beyond talent lie all the usual words: discipline, love, luck, but most of all, endurance.
-James Baldwin, 1924-1987, American writer
In the Winter 2002 issue of Educating Children for Democracy, the journal of the International Step by Step Association, Mykola Swarnyk, a parent from Lviv, Ukraine offered this advice to parents who have disabled children:

"Each of us has the right to show our feelings, including anger, frustration, and hurt.  It is no secret that a child with a disability can be a source of frustration that can lead to feelings both of guilt and of being wronged by the world.  Sometimes with this comes the laying of blame on a family member.  However, we must also think about how this affects others in the family — the husband or wife or mother or mother-in-law who is being made to take the brunt of our feelings of guilt.

"Often we extend great latitude to the child with the disability, while at the same time placing unrealistic demands on other members of the family, such as an older child.  It is here that we must be extremely careful, even though it may be hard to imagine that a healthy child could be jealous of a sibling with disabilities.  If a parent is delivering sweets, toys, and kisses only to the child with special needs and reserving the dustpan, mop, and dirty dishes for the sibling, it can lead to jealousy expressed covertly or through outright rebellion.

"This is true for other family members as well.  The father, eldest child, or grandmother who is not excluded from the tired mother's attention, but allowed to be part of the family, will be more likely to help care for the child with a disability and share in the love of the family.  Love is such a wondrous thing, because when it is divided it does not become smaller, but multiplies in volume."






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Comments (16)

Displaying All 16 Comments
Exchange Press · September 13, 2011
Redmond, WA, United States


Thank you for your comments regarding the title of this EED. Please see the September 13, 2011 EED for our response.

Deborah Newmark · September 09, 2011
The Children's Project
United States


I am pleased to add that a wonderful book How To Raise Emotionally Healthy Children based on five critical emotional needs that ALL children have: the need to feel RESPECTED, IMPORTANT, ACCEPTED, INCLUDED and SECURE has been a successful foundation used with many families raising children with special needs. We do not distinguish special needs children to children without special needs as ALL children and parents have these same five needs.

I agree with many of the comments above as a member on our Board who does speaking engagements on How To Raise Emotionally Healthy Children has a wonderful, beautiful, intelligent visually impaired child....and a family that has always incorporated these five needs.

http://www.emotionallyhealthychildren.org

Michele · September 09, 2011
Romulus, MI, United States


People/Child first language. The title should read, "Advice to families who have a child with a disability."

Viviana · September 09, 2011
United States


I am glad several of us in the field immediately responded to the article. I also was disappointed in the language used. We as the leaders in our field have to be sensitive to our children. We must advocate for all children.

LeAnne Lorenzo · September 08, 2011
Schnecksville, PA, United States


The message of this article is very important but the authors may want to begin to think about the language used when writing about people with disabilities. Children with disabilities and other special needs are children first. They are not disabled children. The disability is only an attribute of the child, not the child. Does this make sense. There are many resources on People First language. If you would like information, please contact me.

Brenda Dennis · September 08, 2011
Durham, NC, United States


Parent perspectives are always valuable so thank you for sharing this article and resource. A suggestion - Mykola Swarnyk uses People First Language (e.g., "child with a disability," "sibling with disabilities"); however, the title and introduction to the article do not. People First Language is a way to write and talk about persons with disabilities keeping the focus on the person - not the disability (e.g., "families of children who have disabilities" rather than "families with disabled children.")

Linda Leonhart · September 08, 2011
Madison, WI, United States


Thank your for sharing this important parent perspective.
It was diminished only by the choice of words in the title. From now on, please implement a policy of modeling "people first' language in all of your communications. It will take minimal effort and have a profound significance!
Thanks for your attention to this critical detail.

Leslie · September 08, 2011
United States


I must agree with all those who have also raised their disappointment in YOUR choice to DEVALUE the image of the child by your choice of wording. Shocked as well as very disappointed by "Exchange's" actions and the choice that YOU made by highlighting it as well- by wording it as such in the title of the article. To be "leaders" in the field -- you lead us astray today!

Upon closer look at the article -- the parent clearly got it right -- but the words that the exchange included and wrote - the "leader" in the field -- clearly did not! Again it epitomizes that it was YOUR words (exchanges) and YOUR choice (exchanges) in the use of the wording -- disappointing to say the least.

I wonder what is your image of the child?

Kimberly Railey · September 08, 2011
Mariah Group Unlimited
Phila, PA, United States


Thank you for this timely article. As an Early Childhood Specialist, I facilitate a training entitled" "Parents in Denial". I have found this workshop to be very much in demand. While practitioners are justifiably concerned about children in their care, attention needs to be given to why parent's struggle with acceptance of a disability; the stages of denial; how it impacts relationships and support systems needed to help them through the process.

Debbie Bruns · September 08, 2011
Southern Illinois University Carbondale
Carbondale, IL, United States


Article raises some important points but title MUST include person first language to meet the Individuals with Disabilities Education Act which adopted person first language in 1990 and the resulting orientation of the field.

The first thing I tell my Early Childhood students is to use person first language. Parent with a child with a disability can refer to their child in any way they choose but we, as professionals, must use the correct and respectful terminology. Exchange Everyday must model this as well.

Debbie Bruns, Ph.D.
Associate Professor
Department of Educational Psychology and Special Education
Southern Illinois University Carbondale

Jean · September 08, 2011
Rolla, MO, United States


It is 2011--time for people-first language! Also, the article presented some important topics in a very negative manner.

Sarah Norris · September 08, 2011
Savannah, GA, United States


Really...professionals in the field of young children and no People First Language--a re-write of your title..."Advice to Families with Children who are Disabled" or let’s take it one step farther..."Advice for Families with Children of Differing Abilities."

Dayana G · September 08, 2011
Miami, FL, United States


I enjoyed reading this article, great for families. However, I was very dissapointed to see how you're not using "People First Language" when talking about children with disabilities. Disabilities is something people HAVE it does not defined who they are. The right way to say this is children WITH disabilities. I'm schocked that the appropriate way to say this was not used in your article today, and I'm sure many families are dissapointed as well.

Jennifer Viets · September 08, 2011
United States


I was surprised by the bold title and later the references in your article to a disabled child. I would like to gently remind the "Exchange" that when talking with or about people with disabilities you should use "People First" language. It is a child first who happens to have a disability - not a disabled child. Not a visually impaired teacher but a teacher who has a visual impairment.

Thank you,
Jennifer Viets

http://www.disabilityisnatural.com/explore/pfl

Karen Lock · September 08, 2011
United States


I usually cannot wait to open the Daily Child Care Exchange email for some great new information on the ECE field. Today however I was very disappointed. The title is very discriminatory and does not use people first language. As an early childhood professional I am constantly reminding everyone that the child is first. Children with differing abilities or a disability as your article states are afterall children first. We must view the child first and then their disability otherwise the uniqueness of each child is lost with the disability label and you miss the opportunity to get to know what makes every child "special", their strengths, needs and interests. I would hope in the future that this error is corrected and people first language prevails. It should be Advice to Families of Children with Diabilities. Yes the order does make all the difference in the world and is more respectful of the child and family.

Susan Burns · September 08, 2011
United States


I read your exchanges most days and find them helpful and inspiring. When I saw this one I was excited to see your message but got distracted by the bias language. Please always, your are addressing "children with disabilities" - the child is first - never use "disabled children" because the disability is not primary. Children with disabilities are children first.

Thanks, Susan

http://www.disabilityisnatural.com/explore/pfl/



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