We Laugh So We Don't Cry: Caring for a Disabled Family Member
Author: Kathleen M. Cleaver | Contact: Disabled World (Disabled-World.com)
Peer-Reviewed Publication: N/A
Library: Blogs - Writings - Stories Publications
Synopsis: When you are disabled or care for a disabled person you often have friends who you can share stories with that others don't find interesting or humorous. These are the friends who laugh with us so we don't cry. Young children often mispronounce words. It is cute at first. If the mispronunciation persists, they are referred to speech therapy for correction. For some disabled children, like my sister and my daughter, the mispronunciations persist even with intensive therapy. We learn to accept, understand and find the humor in what they are saying.
"Friends can help you celebrate good times and provide support during bad times. Friends prevent isolation and loneliness and give you a chance to offer needed companionship, too. Friends can also: Increase your sense of belonging and purpose." (anonymous)
There are different groups of friends. We have our neighborhood friends, school friends, work friends, internet friends, and friends who share similar interests just to name a few. When you are disabled or care for a disabled person you also have your "special' friends. These are the friends who you can share stories with that others don't find interesting or humorous. These are the friends who laugh with us so we don't cry.
A Few of My Stories
Young children often mispronounce words. It is cute at first. If the mispronunciation persists, they are referred to speech therapy for correction. For some disabled children, like my sister and my daughter, the mispronunciations persist even with intensive therapy. We learn to accept, understand and find the humor in what they are saying.
While some of the words they say might sound offensive to some, our special friends understand and laugh with us. They surprise us with how they have trouble pronouncing simple words but pronounce naughty words loud and clear. Here are some examples.
My mother prayed with my sister every night. One of the prayers my sister recited was the "Hail Mary". For my sister, it was not "Hail Mary, full of grace;" it was Hail Mary full of grapes!" Mary did not pray for our sinners; she prayed for our dinner! I guess grapes and dinner were more relevant for my sister than grace and sinners.
My daughter and my sister reside at an intermediate care facility called Divine Providence Village(DPV). Neither girl is able to say the full name of the facility or pronounce all three words correctly. Divine is easy for them to pronounce. Providence is pronounced as "problems" and the word village is nonexistent in their interpretation of the name. Divine Providence Village has been renamed Divine Problems by my family and close friends. The girls are my joy and my divine problems!! We laugh with our divine problems so we don't cry.
When my daughter was diagnosed with cerebral palsy, I was told that she would probably never talk due to part of her brain that was damaged. Boy, were they wrong!! The only problem is she is very selective to whom she talks to, and that's me. I prayed for her to have the ability to talk. God answered my prayer, but I think I may have prayed a little too hard. She talks nonstop to me. Maybe, it's because she knows I can understand what she is saying. My daughter has trouble forming many of the consonant sounds. One sound she cannot pronounce is the hard C which she replaces with a P. When you change the C to a P the words Chris, Christ, and Christmas come out sounding like words that may be offensive to others. It makes the Christmas season very interesting!
There are two words that my daughter pronounces very clearly, much to my embarrassment. She loves dining in restaurants. There are three requirements for taking her to a restaurant. It has to be wheelchair accessible. The menu has to have food that she can eat. And last, we need to sit at a table far away from small children. Like most of us, a child misbehaving or crying can be somewhat upsetting. Usually, we can look away and ignore the behavior. Not my daughter. She expresses her disapproval by saying very loudly "bull shoot, shut up baby" over and over until we can calm her down. We put our heads down and ignore their stares while in our minds we are laughing and thinking, you go girl! Tell that kid to behave!! We Laugh so we don't cry.
Acting as an Interpreter
We often have to act as interpreters for our disabled family members. Sometimes mispronounced words are hard to understand. Sometimes words are used in a different context. Sometimes they make up a nonsense word that we don't understand but has meaning to them. Below is a list of the words and phrases my sister and daughter use. I call it my "Creative Dictionary." We laugh so we don't cry.
- MiMi Mamome - It is not a name; it's leave me alone
- Side 2 - It is not the flip side of a record; it means I put a shirt or bib on backwards.
- Ocean poo - That is not something disgusting; it is the Atlantic Ocean. (Although, it might be a good description of the ocean when they have to close the beach.)
- Big water - the ocean
- Boardwalk - usually associated with the boardwalk at the beach but also refers to wooden decks and park bridges.
- Summer heat - air conditioning that blows through the heating vents in the summer.
- Downstairs - It doesn't matter if you are going up or down; it is always down stairs.
- Little records are CD's
- Daddy's heaven - the cemetery where my father is buried.
- Go to heaven - They understand that when someone goes to heaven they can't see them anymore. If they say they want someone to go to heaven it means they don't like them and don't want to see them.
- A blood cup is a blood test.
- A ratastratafus is a thermostat - Thanks to my brother for teaching my sister the nonsense word.
- Sr. Anna - The movie Sister Act or any woman dressed in religious attire.
- Mr. Big Leg - We have no idea who that is!!!
- The moving bed - a hospital gurney.
- I spilled my food all over the floor, BLA! You will find the answer to this one in the next section, "Bathroom Humor."
Bathroom Humor (But not the kind you are thinking of)
Using the bathroom can be a struggle for a disabled person, especially if they need assistance or use a wheelchair. A disability can also affect how you use the bathroom.
By the age of four, my sister learned that the purpose of the toilet was to eliminate the waste that your body no longer needs; i.e. She was potty trained. She also understood the urgency of using the toilet when nauseated, but she didn't get the position quite right for that function. She sat on the toilet and proceeded to vomit. Proud of herself for making it to the bathroom she announced proudly, "I spilled the food all over the floor, BLA!" Fortunately, she was sick infrequently. Unfortunately, it took quite a while to teach her the correct position for eliminating unwanted stomach contents.
When you care for someone with a physical disability, bathroom humor can center around toilets, toilet seats, bathtubs, shower sprays and using public bathrooms.
Did you ever notice that most public bathrooms only have one accessible bathroom? If the accessible bathroom is occupied, you either hope that the disabled person you are assisting can wait, or you try to squeeze two people and a wheelchair into a stall while trying to provide modesty by attempting to hold the door closed. It is quite a feat!! Using an accessible bathroom is fun too. There are the usual concerns; is the bathroom clean, and is there toilet paper? You start to help your loved one out of their wheelchair only to realize, "oh sh_t", the grab bars are only one one side. That is fine if you have the use of two hands. My daughter does not, making bars mounted on the right useless for her. Why do the people who design accessible bathrooms think everyone has two usable hands, especially someone who is disabled? With much planning, strength, sweat and coaxing and several minutes, We finally finish the job. I open the stall door to find the bathroom full of people waiting to use any stall available. I smile, and thank them as they part like Moses and the Red Sea. That is how it is with my daughter. We laugh so we don't cry.
Did you know that the direction a bathtub faces can make it difficult for a physically disabled person to access? When shopping for a new home the realtor was puzzled when I questioned the direction of the bathtub. The position of a bathtub determines on which side grab bars can be placed. Our daughter can only use bars that are to her left. I could tell by the realtor's face that I just destroyed his sales pitch for a fully renovated bathroom! We laugh so we don't cry.
Toilets are another issue. Thank goodness someone invented the high rise toilet with grab bars. It makes it much easier and safer for the disabled person. My family has renamed our accessible toilet the easy chair. I like to call it the throne. We purchased the grab bars after our daughter lost her balance and fell off the toilet. Fortunately, she wasn't hurt and laughed as we struggled together to lift her up from the floor.
The seat is another issue. Have you ever had a discussion with a friend about the sturdiness of toilet seats? A physical disability can limit the control a person has over their body. While we able-bodied people can control our ability to sit down gently, a physically disabled person may not be able to. They plop down with all their weight causing the hinges on plastic toilet sets to break. A friend of mine has a son who is physically disabled and, yes, we have had conversations about toilet seats. Conversations about how many toilet seats we've had to replace. What is the strongest toilet seat that would withstand the shock of someone plopping down on it? Is it better to buy one with or without a lid? The seats without a lid tend to be stronger although not as sanitary for flushing. We laugh so we don't cry as we share our toilet seat research.
A physical disability not only affects the nerves and muscles that help you to move, it can also affect the muscles inside your body. Our daughter has trouble with her bowels, but not in the way you think. Her bowels move so well she often stops up the toilet. We call them "hopper stoppers." I am now an expert plunger!! Recently, we had to replace one of our toilets. I learned that you can buy a toilet with an industrial flush, guaranteed not to clog, for your home. The only problem is that the flush is so loud it can be heard by the neighbors. I opted for the normal flush and the use of my plunging skills.
I have learned that it takes skill and practice to use a shower hose when bathing someone, a skill I have not yet mastered. Do you keep the shower hose running or turn it off while lathering your loved one? If I keep the hose running I usually manage to accidentally move it and squirt myself. If I turn it off, my loved one has to sit and shiver while I adjust the temperature and wait for the water to warm up. I choose to keep it running. I can always change my clothes! We laugh so we don't cry.
To the General Population
Everyone has challenges in life. These are only a few of mine. Caring for a disabled person can create challenges you may not realize. You may not understand my humor, but it is what keeps me strong. It is wrong to laugh at someone. It is correct to laugh with someone. I hope you can laugh with me. " When life gives you a hundred reasons to break down and cry, show life that you have a million reasons to smile and laugh. STAY STRONG." (messages.365greetings.com) We laugh so we don't cry.
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, January 26). We Laugh So We Don't Cry: Caring for a Disabled Family Member. Disabled World. Retrieved March 25, 2023 from www.disabled-world.com/disability/blogs/laugh-cry.php
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