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Magazine Features
Dealing with Difference
by Leisha Maw
As a mother of two disabled children, I have learned that most people want to include those of differing abilities, but they don’t know how. Here are some suggestions to help put everyone at ease.
I pushed the cart through the crowded aisles, shaking my head at the squeaking whine coming from the left front wheel. All around me people turned to stare. I pasted on a smile and tried to convince myself they were staring at the anguished grocery cart, but I knew - they were staring at my children.
My two boys were crying, tears streaming down their red faces like the first trickle of a dam about to burst. There was too much stimulation in grocery stores. Too many noises, smells, sights, and people.
I pushed my whining cart and weeping children more quickly so we could get the most necessary items on my list before they had a complete meltdown. I knew it was coming. Soon.
We didn't make it. I abandoned my cart, my groceries, and my pride in the middle of the checkout line when a woman asked, "What is wrong with your children?" Perhaps she had never seen a six- and four-year-old throw a synchronized tantrum.
I have to admit, it was a good one, complete with head-banging. The other shoppers were lucky I didn't start screaming as well. I wanted to - that or cry - as I carried both my rather large children out to the car, one under each arm. In fact, I did cry. I sobbed all the way home.
A Kinder Way
Most parents, at one time or another, have had the dubious opportunity of accompanying a screaming toddler through a checkout stand, or fielding the curious looks thrown their way when their children misbehave in public. For me, it isn't an occasional episode to be laughed about over dinner later that night - it is an ever-present threat.
I am the mother of two disabled children. This sets me apart from most mothers. It can distance me from the comfortable playground chatter, the proud comparing at the doctor's office, and the friendly waves in line at the store. Other parents may want to include me, but they don't know how to bridge the gulf that separates our lives.
Many try, but awkwardness usually results. One of the most common attempts to span the gap is that question - "What is wrong with your child?" Most of the time this is a well-meant, uncertain query intended to bring my world and theirs together. Occasionally it feels like a cold condemnation implying that my parenting is somehow responsible for my children's behavior.
I also abhor the word wrong. It is a word that should never be applied to children, especially if they are present. No child should have to hear his or her parent confirm that something is wrong.
Several years ago a woman who worked at my children's school taught me a kinder way to broach the subject. As she approached me, I recognized the curiosity in her eyes and braced myself for that question.
But what actually happened with this woman surprised me.
The woman simply smiled warmly and said, "Tell me about your boys." It took me a moment to respond. Frankly, I was overcome with relief. This had never happened before. I had grown so accustomed to defending my children that I hadn't realized how desperate I was to talk about them.
Almost all parents enjoy talking about their children. They yearn to brag about a new accomplishment or complain about a messy room. I did, too. And now, like a gift, this woman had given me the opportunity to do so with no strings attached.
I love that woman. I don't know where she is now, but I love her because she opened a door to my soul. She gave me the opportunity to share my joy and concern for my little ones without having to defend them.
When To Ask about Disabled Children
There are three groups of people: strangers; acquaintances and co-workers; and close friends, family, and professionals who work with children.
While I'd like to think that the woman in the grocery store meant the best and only wanted to help, as a stranger, she had no vested interest in my family. It was inappropriate for her to inquire about my children in such a manner. Strangers shouldn't ask. If you see someone with disabled children, treat them exactly the same as you would anyone else. Kindly curb your curiosity, and keep the conversation light and neutral.
When you are acquainted with a child with disabilities or his or her parents, you do have a vested interest in them. It is natural to feel concern for the family. Asking about the disability in a polite, caring, non-threatening manner, at an appropriate time, shows genuine interest in your friend or co-worker.
If you are a close friend, family member, or professional to someone with disabled children, you hold a unique position. You are part of their support system. The more you know about the disability, the better you can help them. Seek out reliable information about the disability from the Internet and books. Sincerely ask how the family is doing. Show an interest in their lives, but be sensitive to the grief the parents may be experiencing, and let them grieve. Be perceptive, understanding, and patient.
Addressing the Disability
People generally respond in one of two ways when encountering those with disabilities: they stare at or they overlook the individual. The latter is a common and understandable reaction stemming from a desire to not offend. While I understand this, ignoring a person with a disability is as offensive as saying the wrong thing. When dealing with individuals with disabilities, ignore the disability, not the person. Meet their eyes; don't pretend they don't exist.
A good example of this is my dear friend Melissa. She has dedicated her life to teaching children with severe disabilities. To her they aren't different; they are simply children with distinct personalities, interests, and talents. She tempers her expectations to the unique abilities of each child, but treats them like everyone else. She has learned to see past the disability to the child. She focuses on what they can do. That, I think, is the secret.
In learning to approach and interact with those who struggle with outward differences, we must recognize that inwardly, we are all the same. When we focus on what we have in common, the disabilities fade to the background, leaving only the person and all their glorious abilities.
Gaining the Appropriate Skills
I have learned that most people do want to include those of differing abilities, but they lack the knowledge of how to approach either the individuals themselves, or, as in my case, the parents. This lack of experience leads to uncomfortable, even painful encounters. You will need practice in ignoring the disability and focusing on the individual. Being aware of your actions and attitude is the first step.
But inclusion is a partnership that works only if both parties are trying. Parents share in the responsibility of assimilating their children into society, which I recognize with my boys. It has taken me years to school my feelings and reactions. I have learned to see the intent behind the overture.
As you strive to perfect your skills, keep in mind that every parent of a child with a disability has bad days. Sometimes even the most carefully worded, genuine inquiry may be met with tears or anger. Remember, they are learning, too; it takes a lot of practice to face the world with a cheerful heart when your most prized possession, your child, is hurting.
Be courageous as you meet and befriend people with disabilities and their families. Never forget that your words and actions have immense power; carefully craft them to avoid injury. Always think of how your message could be received. Be friendly, genuine, and honest, and you will be remembered for enriching lives.
I will always be grateful to the many dear friends, family, and professionals who treat me and my family as equals and grant us the blessing of acceptance - this, along with abundant blessings from above, fills my heart with hope.
Dos and Don'ts
Do
Say hello
Smile
Be friendly
Treat disabled people like everyone else
Act naturally
Make eye contact
Be genuine
Ask appropriate questions
Teach your children how to ask appropriate questions
Include the disabled
Don't
Point
Stare
Laugh
Ask what is "wrong"
Ignore
Avoid
Whisper
Label people with disabilities as "special"
Say you understand
Joke about the disability
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Veronica in USA
My husband told me about an article he read by a columnist called, "Mr. Manners". In it, Mr. Manners said that the best way to deal with someone who asks an inappropriate question (such as "What's wrong with your child?" or "how much money do you make?") is to look bewildered at them for a silent moment, then go about doing what you were doing as if the person didn't ask anything. If the person asks again (which is very unlikely to happen) you can respond by saying, "Oh I'm sorry. I didn't realize you were being serious when you asked that question just now." Then continue going back to whatever you were doing/talking about without ever answering the question. I thought that was a very good way of dealing with impertinent questions.
Melissa in Rexburg, Id.
Leisha, Thank you so much. I am in the same boat and have felt the eyes of judgement cross me more than once. I have charge of some very special people (potentially challenging yet very AWESOME people) and no one really seems to understand that. Thank you for explaining!!!
Stephanie in ?
I forget the title. But saying that parents of such children need their room to grieve??? Why would they be grieving? I'm confused. It would be a sad day to think that parents of mentally challenged people were grieving because of their children and the way they may be acting due to their label. I love working with people that are mentally challenged because it actually challenges me to learn of them and their abilities at a whole. It makes me step outside myself and see things from their perspective. We should never "Expect" anyone to conform to us just because we or they believe it is the Right way. It never is or will be.
Hellen Spijkerman in Netherlands
I am a mother of a disabled child. I do recognize all the things in the story. My heart breaks when I read the comments from people around us. As a mother I feel sometimes lost, heartfelt plead, a broken heart because I try to do my best and it just won't work. The Lord trusted His special children in our care. But that doesn't mean that it is always easy. It sometimes kills us or brings us some many frustrations and sometimes into tears. Many people have pointed a finger to us. But we could use at those times a kind and loving helping hand. Love is what a mother needs, understanding and compassion. Not our judgment(s). Through our son I learned a whole other side of human beings and those who are truely friends. I had to rely on the Lord more often at times when others would let me down. It's still hard at times and sometimes I am even desperated because I don't know always the why's and the how's too. But it's my challange to help my/our child to feel that he is loved, welcomed, wanted. But most of all that he is also a child of Our Heavenly Father.
Katie in California
From what I understand (from some academic study on disabilities, not from experience), parents of children with disabilities grieve because the hopes, dreams, and expectations they originally had for their child (when they found out they were pregnant, or when they had their child) have been crushed once the disability is discovered. It isn't because they don't love the child as he or she is - it's because their original hopes and expectations are so different from reality. They go through the grieving process (sometimes several times during life), just as someone would in losing a loved one to death. Again, this is just what I understand from listening to parents describe their experiences; maybe other parents understand or experienced it differently. In any case, I thought this was a wonderful article. It helped me to better understand the perspective and needs of not only an individual with disabilities, but of the people who love and support them.
Lisa in Salt Lake
First let me say I really enjoyed the article. "Tell me about your children," is such a great way to allow parents to share what they wish to share about their children. I wanted to comment about grieving, as a parent of a child with disabilities. When we received the diagnosis, I cried for three days, grieving as was mentioned for the adult he would never become and the dreams that would never be realized. I have grieved again over the years momentarily - when his peers were getting baptized, graduating from Primary, passing the sacrament, etc. - as these are milestones he may never reach. But I have never grieved that this child is in our family. He has brought so many other blessings along with his challenges. I have never grieved because of his behavior in public. He has made me and our family better people because of his sweet influence on us and I wouldn't wish that away. Thank you for this article to help us all interact with each other in a loving, accepting way.
S in Utah
Thank you to this mother as I cry in great agony...because I am disabled and know the horrible treatment others send day in and day out! She is right, to be ignored is more horrible than to be told you are stupid and "special" at least the words say what they think of you. The medical profession and all persons in the communities ignore and treat me like I am some invisible monster from another galaxy! I AM a person! I have real feelings! I am the one who must curb the other's laughter AT me. I am the one who must walk in the ditch in order for the others to have the right of way. I am the one whose calls are never answered and ignored and then told by a very few "if you ever need anything just call"! Why should I call? you never answer! I walked in the recent down pouring rain over ten miles each way just to get to an office to leave a letter soaked through and through with rain water pouring in my eyes and mouth and lungs drenched wet and freezing still forced to walk only made others more and more rude and ignoring...actually walking taking their cell phones off their ears while their glares told me to get lost and good riddence! I stepped off the curb to allow them to pass. Then heard and felt their stinging intentional stabs. I was so exhausted and ill but had to do for myself the best I could. On the return trip I stopped at the local grocery store briefly to post the letter I did not make in time before the place closed. Startling a young lady who was busy mopping the floor I asked it the store had a mail drop in it. She said yes and pointed to the counter where there was a whole to put mail. I appologized for scaring her and tried to make converstation by telling her that the weather outside was undecided...the young angel asked me about being there and I told her I walked it was not raining when I started out hours ago. She one in millions of people - told me she got off in a half an hour and she would give me a ride back to where I stay if I wanted her to do this for me. I was shocked and grateful! NO ONE helps me! NO ONE assists me. I must try to get by going without everything and if I go somewhere I must walk best I can if I can't get back who cares! NO ONE. To this greater ignorance and NO room in the inn in people's hearts ONE angel sent from God above gave me relief and because she offered a ride I could also obtain a couple of groceries. When she took me to the basement she also brought in the sack of groceries! To this mother, thank you. I can cry with you and because you speak the truth! I am a professional special needs instructor and have never seen anyone with less than full whole eyes, now it is my life to be treated as I have fought against and am too disabled to be any better off than to have to go without, not able to work more than a meager amount as medical difficulties increase. So as all services are denied to me who will bury me when I do die? Answer: NO ONE..they will deny me this "luxury" too. But for the moment I am a cheerful hopeful person. So do not wish to complain or murmur...one day everyone will have the same opportunity to receive as well as give. I hope I may continue to give to all who are unable to have a "good hair day" no matter how they treat and mistreat others. For all who say they "don't know how or what to do" read this article and do as the author instructs you to do.
Julie in Idaho Falls
We have a 10-year-old daughter with special needs; she does not walk or talk or feed herself or do a million other things that other 10-year-old girls do. She has the most infectious laugh and can help anyone feel good just by being near her. She has the amazing ability to love EVERYONE, even strangers. What's more, they feel it. Sure, we've had to endure our share of tactless comments ("Is she mentally insane?" "Why can't she talk yet?" "What happened to her head?"), but I wanted to share one experience that will remain with me forever. It is sometimes difficult taking our daughter out in public, because we never know when she will yell or scream - not because there is anything wrong, but because that's just what she does. It's sort of like a baby yelling just to hear the sound if its voice. At any rate, we were in a restaurant when she started yelling -- just because! -- and I was steeling myself for the looks and possible comments, when this total stranger approached me, put her hand on my shoulder, and said, "Aren't these children just precious? They come straight from Heaven, so filled with love! And aren't you one of the lucky ones that she was able to come to you." She then leaned over, looked right into my daughter's eyes, and said, "Oh, you are a beautiful thing. Just beautiful." My daughter stopped yelling, looked at this lady, and they smiled at each other. A pat on the arm, another smile at me, and then she was gone. It was a moment of reassurance for me, and acceptance for my daughter. I will be forever grateful to this woman for her kind words to us that day.
kehumile Nkabina in Botswana
I have a seven year old who is differently abled. She cannot walk or talk. Most of the times we carry her when going for shopping. I used to get so hurt when people stare at us. One shop attendant once said, "How can you carry such a big girl?" I looked at her and wanted to tell her a bit of my mind. Something blocked my throat and i chose to keep quiet. I read a lot of books about coping with disabled children. Bit by bit i started to heal. I started smiling at people who stare and answer those who ask. When we are around who seem to question my child's condition. I talk to her, we converse though she bubbles and shouts we continue in our conversation and laugh together, they eventually give up and join our laughter. What still bothers is i rarely get chance to take the sacrament on sundays. The reason being my girl shouts and makes noise because of her condition. I cannot sit with her in the chapel because some people get so irritated even if im seated at the far back- which i always do anyway. I sit in a room where there is a mic to listen to what is happening in the chapel. Sometimes the mic will be out of order and i will not get what is happening or even announcements. The good thing is that when it all quiet in that small room i will pray for the lesson im going to teach, i pray for her and pray for everything i want to pray for. I have told myself that i should work hard to turn everything that presents itself as an adversary into an opportunity to something to do something good. Kehumile Nkabina Masala [ Botswana- Gaborone West Ward}