What insight/advice can parents of children with special needs offer each other on the road to acceptance?

Resources:
Allen, J., & Allen, M. (1979). Discovering and accepting hearing impairments: Initial reactions of parents.  Volta Review. 81( ). 279-285.

Atkins, D. (1996). The Social Worlds of Children Adolescents and young Adults: Challenges and Opportunities. Unpublished Manuscript.

Gerst, D. (1991). Trevor is a citizen: Why grieve? Unpublished Manuscript.

Luterman, D., & Ross, M. (1991).  When your child is deaf A Guide for Parents. Parkton: York Press.

Smith, P. (1984). You are not alone: For Parents When They Learn That Their Child Has a Handicap.  National Information Center for Handicapped Children and Youth. March, Washington, D.C. 214-217.

Summary:
“What would have helped me during the days, weeks and months following my son’s diagnosis? First, it would have been helpful if people had seen what I was going through, and helped me to see it as a crisis, rather than grief.  I’ve lived through my share of crisis, but no one helped me to see that the things I had learned from previous crisis could get me through this one (Gerst, 1991, 138).

“Eat well, develop exercise habits, turn off the TV, talk with each other, and relax.” (Luterman &  Ross, 1991, 161).

“At the beginning we usually say, “Believe it or not, you will laugh again.” Often that brings tears, tears for everything that is gone, for everything that never will be the same.  We tell  them to cry and we usually cry with them.” (Allen & Allen, 1979, 279).

“Don’t sit back and accept everything that the professionals tell you about how to educate your child or his or her potential for the future.  Do your own research.  Speak to anyone who may be of help.  Make educated decisions.  Must read books: Choices in Deafness,
Sue Schwartz and Learning to listen, Pat Vaughan” (Luterman & Ross, 1991, 167).

“Kids will have bad days, grumpy days, sad days, tired days, and not hungry days – just like grown-ups.  Days that look like regressing or “ slipping back” are often just resting spots.” (Atkins, 1996).

“A positive attitude will be one of your genuinely valuable tools for dealing with problems.  There is truly always a positive side to what is occurring.” (Smith, 1984, 215).

“ The confirmation of the hearing loss initiates a new phase of adjustment for parents that can be given many names.  For parents who are experiencing feelings of guilt, anger, and even hatred of a  the child, of themselves, and of professionals, it is critical to accept these feelings as normal.” (Allen & Allen, 1979, 283).

“ The pain of discovery never really goes away, but it does dull.  Look at your child very well and make your decisions based on his abilities not your desires.  Always remember that they are normal children in all ways except for their ability to hear.” (Luterman & Ross, 1991, 160).
 

Insights:
Families of children with hearing loss and people who are deaf/hard of hearing are the best at explaining what their lives have been like.  This insight can be a very valuable tool.  It provides people with the realization that they are not alone and gives them a connection with those that have had similar experiences.  It is also comforting for some to understand what kind of things they can expect as they raise their child.  Therefore, I ask that you realize that your advice, experiences and support are valuable.  I pray that this information brings you a bit of comfort.  When you are ready, please contact me and I will assist you in sharing your insight with others!

Bibliography:

Schwartz, Sue. (1996) Choices in Deafness. Bethesda: Woodbine House, Inc.
 
 

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