What People Say When You Have a Disabled Child - And Maybe What They Should Have Said
Author: Kathleen M. Cleaver | Contact: Disabled World (Disabled-World.com)
Peer-Reviewed Publication: N/A
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Synopsis: I have three daughters; two are normal and one disabled. Most comments about my normal daughters are generic in nature, the most positive being that they were pretty, smart, and compassionate. The worst being I was spoiling them. The negative comments about my daughters disability are difficult to dismiss. Why do these comments stick with me? Is it because I am more sensitive and protective of my disabled daughter? Probably, since she is unable to protect herself. Is it because I fear people are judging me as a parent? The answer is yes. Finally, is it because people do not know what to say when they encounter a disabled person? The answer is definitely!
Parents are sensitive to comments made about their parenting skills and about their children. Sometimes, these words can stick with you like superglue that has accidentally dropped on your fingers. I have three daughters; two are "normal" and one is disabled. Most of the comments directed to me about my normal daughters were generic in nature, the most positive being that they were pretty, smart, and compassionate. The worst being that I was spoiling them. I don't remember most of them.
It is much different with my disabled daughter. Some people have been very supportive. Others feel they have the right to ignore my feelings or give negative comments or ill-informed advice. The negative comments about her disability are difficult to dismiss. Why do these comments stick with me? Is it because I am more sensitive and protective of my disabled daughter? Probably, since she is unable to protect herself. Is it because I fear people are judging me as a parent? The answer is yes. Finally, is it because people do not know what to say when they encounter a disabled person? The answer is definitely!
My sister was born when I was seven years old. She was diagnosed with a visual impairment at birth. That is a devastating diagnosis for any parent. The way my parents were informed was harsh and unprofessional. I remember my mother, describing to friends, how the doctor walked into her hospital room and told her to have my sister's eyes checked. When my mother asked if my sister could see, the doctor turned and walked out of her room. The doctor should have taken the time to sit with my mother, explain the visual impairment and allow my mother to ask questions.
My daughter was diagnosed with cerebral palsy when she was six months old. I remember my husband and I sitting with the neurologist as he examined her. Included in the examination were the usual questions about my health, my pregnancy and my eating and social habits. After answering no to any questions that would adversely affect my pregnancy and the baby I was carrying, my husband added that I didn't even drink Coca Cola. The doctor's response directed to me was, "What did you do?" That comment crushed me more than her diagnosis. A compassionate response would have been sharing his knowledge of the causes of cerebral palsy and how that might relate to our daughter. Finally, the doctor should have asked, ``Do you have questions or how can I help you?" We did not go back to that doctor.
Our daughter spent the first two weeks of her life in a neonatal intensive care unit (NICU) at a children's hospital. The nurses were fabulous. Our daughter spent her final weeks in the hospital in the transitional unit. Because of the distance from the hospital lobby to the transitional unit and the fact that I was still recovering from a blood clot in my leg, my husband would push me in a wheelchair. There was one nurse who questioned my ability to care for my baby because I was in a wheelchair! Upon our daughter's discharge she said our daughter was "slow" and recommended that I enroll our daughter in their early intervention program. Our daughter was three weeks old and was in the process of being weaned off high doses of seizure medication. I took offense to the word, slow. If the nurse explained that babies who experience trauma or a serious illness at birth are eligible for their early intervention program, I might have considered her recommendation.
When your child is disabled, you celebrate every milestone no matter how small it is. Our daughter had many well educated, talented, compassionate therapists and teachers. Then there are the very few who are insensitive to a child's capabilities and the feelings of their parents. I was thrilled when our daughter learned to touch her eyes, nose, and mouth when asked. When I showed the therapist our daughter's new skill, her response was, "You can teach dogs tricks." I was devastated. She could have, at least, smiled and clapped her hands for our daughter.
There are dreams we remember and then there are dreams we would like to forget. When our daughter was in preschool, I had a dream of her growing up to be a nursing assistant. I described my dream to one of the professionals working with my daughter. The professional's response was,"That will never happen!" Our daughter was very young. We didn't know what she would be capable of achieving. She should have said, "That sounds like a nice dream."
Individualized Educational Plans (IEP's)
I have participated in numerous IEP meetings as a teacher and as a parent. An IEP is an important legal document that outlines a student's strengths, goals to work on, accommodations, modifications and services required to achieve the goals. The IEP is presented to the family, usually, at a yearly meeting, attended by the professionals involved in the child's education as well as anyone the family wishes to invite to the meeting. Meetings can be pleasant and productive, or they can be contentious leading to more meetings to resolve disagreements.
Most of the IEP meetings I attended as a parent and as a teacher were cordial, informative, and very professional. There were some remarks along the way that almost derailed a few meetings.
Picture this: A young mother, holding her infant son, is sitting at her dining room table. Her son is blind. Also sitting at the table are five professionals who provide various types of early intervention services. To begin the meeting, one of the professionals asks, "What would you like for your son?". This was a young mother who was grieving her son's disability. Her powerful response was, "What do you mean what would I like for my son? Can you make him see?". In my mind I am thinking, you go girl!! I don't remember the rest of the meeting. I would have opened the meeting with,"tell me about your son". That would have given the professionals much more information and an opening to ask relevant questions in order to develop a plan.
I worked with a toddler who was born with a genetic disorder resulting in numerous physical and medical issues as well as sensory and cognitive impairments. The mother had a lot to deal with and was having a difficult time. While outlining progress and goals at a planning meeting one of the professionals stated, "Sometimes a brain is broken and can't be fixed". The mom did not react to the comment. I knew from working with the mom and her child, she had accepted the physical and medical issues as well as the sensory impairments. She was not ready to see the cognitive impairment. I knew from my own experience with my disabled daughter that a cognitive impairment becomes more obvious as the child develops. This child was very young and the mom still had hope.
Most of the IEP meetings I experienced as a parent of a disabled child were very professional and informative. There were occasions when I requested a goal or a modification to be changed, or a change in related services. These requests were minor adjustments to the IEP. If my requests could not be met, the IEP team explained why with pertinent information.
There was one IEP I did not sign until it was rewritten. It was because of one word that was used multiple times throughout the IEP, especially in the section describing my daughter's progress. The word was "can't!" I acted like a teacher correcting a student's composition assignment. I crossed out every "can't" and asked for the IEP to be rewritten. NEVER USE the word "CAN"T when describing a child's progress. Be careful. It is not only what you say; it is how you say it and when you say it
People You Meet
Sometimes, people do not know how to react when they see a disabled child. Parents experience both positive and negative comments and reactions from family, friends and strangers. Rather than categorizing the comments and reactions as positive or negative, I categorize them as educated or uneducated. I respond graciously to positive or educated comments and reactions with a smile and a word of thanks. I try to ignore negative or uneducated comments and reactions. Most of the time, these comments are not mean; they highlight a person's ignorance about disabilities. My daughter and I are stronger than their ignorance.
When our daughter was a baby, she had strabismus, an eye condition causing one or both eyes to be misaligned. Her eyes were crossed. I had strangers, upon seeing my daughter, tell me to have her eyes checked. I reassured them that she is under the care of an opthamologist. Maybe I should have expounded on my background of eye anatomy and diseases of the eye as a teacher of children who are visually impaired. People were really "freaked out" when our daughter, as part of her treatment for strabismus, was to wear an eye patch. They reacted like something terrible happened to her eye. If someone asked about the patch, I explained its purpose. My husband, on the other hand, grew tired of the questions. His answer to one of the inquiring strangers was, "Her eye fell out and we had to tape it back in"! We still laugh when telling that story.
Someone once asked me, "Was your daughter born that way?". When I responded,"yes," the person responded, "That's good!". I suppose the person thinks that it is better to be born disabled than to become disabled.
Unsolicited advice can often seem critical rather than helpful. It often comes from people who have not experienced your situation. When my disabled sister was young, my parents were advised to place her in a boarding school for the disabled. When she was four-years-old, my parents bought her a tricycle. They were told, because my sister was visually and intellectually impaired, she would never be able to ride a bike. Not only did my sister learn quickly how to ride, she navigated the bike around the block without assistance. When my daughter was born, people offered their opinions about what I could have done to prevent the complications of her birth. We responded to the unsolicited advice, not with words, but with strength and actions to prove the person ill-informed.
People react in different ways when they see a disabled child. Some will be helpful and understanding. Some will react like the disability is a contagious disease and distance themselves from you and your child. Others will feel it is their right to judge you as a parent or your child's abilities and give you unwanted advice. And then there are the people who either stare or ignore you and your child completely.
What do you do? It depends on you, your child, and the situation. You can express your appreciation to those who understand. It can open the door to an informative and supportive conversation. You can choose to educate someone who is uninformed about your child's disability. You can change the subject or ignore the comment completely. Sometimes, you need to confront the person to show that their comment is wrong and hurtful to you and your child. Hang on to the positive reactions and comments. Dismiss the negative and uneducated comments. Connect with the people who understand what a disability means for you, your family, and your child. Share the joy in your child's love and accomplishments.
About Kathleen M. Cleaver
Kathleen M. Cleaver holds a Bachelor’s degree in elementary education and the education of children whose primary disability is a visual impairment (TVI). During her thirty year career as a teacher, Kathleen received the Penn-Del AER Elinor Long Award and the AER Membership Award for her service and contributions to the education of children with visual impairments. She also received the Elizabeth Nolan O’Donnell Achievement Award for years of dedicated service to St. Lucy Day School for Children with Visual Impairments.
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• Cite This Page (APA): Kathleen M. Cleaver. (2022, March 11). What People Say When You Have a Disabled Child - And Maybe What They Should Have Said. Disabled World. Retrieved June 2, 2023 from www.disabled-world.com/disability/blogs/sensitive-supportive.php
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