Dealing with Disable Children and their families
With the need to understand what parents of children with disabilities undergo, I had to embark on a journey to identify the parents who have these children and possibly share their experiences.
The identification process was a bit challenging as I wouldn’t have to go knocking at every door asking if the owners had a child with disabilities. I had to come up with a plan of finding out without wasting so much resource. I remembered my Aunt Josephine had a child with disability.
Her 2nd born child, Kelvin was deaf. I also had to find another one so that I can get a clear picture on how one lives with a disabled member. I came up with a plan that I should go to a school for the handicapped, take a sample of the children and find a parent with disabled children.
I located a nearby school (Brooklyn School for Children with Disabilities).I was to go there and talk to the children and possibly take the home address .Embarking on a journey; I went to school and realized that the children were on their holidays. Fortunately I met one of the teachers whom managed to give me the contacts of a parent with a child with disabilities who lived close to the school.
The next day, I went to the house the teacher gave me the contacts; I was welcomed by the gate keeper and directed me to a room where I am to meet the parents of the child.
Me: My names are Wayne Chrishner and I am here to get to know some things from you regarding your child with disability.
Christine: Welcome very much Mr. Wayne; I will be ready to help you with answers of what you want to know.
Me: Thanks Christine. Do you live alone in this house with ……. (What’s the name of the Child)?
Christine: Her name is Emma.
Me: Thank you. As I was asking you, do you live with Emma alone or there are other family members?
Christine: For now, we are just the two of us, me and Emma and of course the gateman. My husband works far and he usually visits us during the weekends. The other two of my children are still in school. The eldest Called Cynthia is Studying in Colorado State University while, Edward is in high school is coming home next week. Emma is the youngest and its very unfortunate that she is disabled.
Me: It’s ok Madam. The reason why I am here. Kindly tell me how it feels to be with a person with a disability and what it takes to take care of such a person. And what disability does Emma have?
Christine: Emma has a walking disability, she doesn’t walk. She is now confined to a wheel chair. The moment I discovered that my Emma was disable, I couldn’t believe. After taking long as compared to other children to stand on her own, I realized there was a problem. I went to the doctor and confirmed to me that she indeed was suffering from Cerebral palsy which affects the brain and leads to uncoordinated movements thus difficulty in walking. Gathering for my daughter has been a very challenging task for me. I have to make sure she is comfortable and happy all the time. I take her to the toilet when she feels like, clean her and do all kinds of work she could have done on her own if she had no disability. But she eats on her own.
Me: And as we speak, where is Emma at the moment?
Christine: She is on the other side of the compound playing with a neighbors’ daughter.
Me: Wow! That’s good. I will have to check on her if you don’t mind but let me ask you one thing…..
Christine: No problem. Ask me, it’s my pleasure to be of great help to you.
Me: What has greatly helped you to take care of her without straining and what is hindering you in carrying out this duties.
Christine: My job has helped me a lot. Having my own business has contributed a lot for ma ability to help since I am flexible. Any time Emma needs me, I am at her doorstep for any assistance she needs. Sometimes I don’t go to work just to help her like now when she is at home, I find hard to leave her alone.
Me: O.k. will plan on getting someone to help you so that she can take cre of your child while you work.
Christine: I will appreciate so much.
Me: No problem. Now let me go watch Emma play is I depart. Thanks a lot for your time and we will be communicate as often as possible to know how Emma is doing.(Exchanging Contacts).Bye.
As I exited from the door to the other side, I saw Emma playing. Though with so much difficulty, she seems to be happy and not bothered by her disability. I greeted them and I realized that also the wheel chair she had was worn out and she required a new one. Walking crutches also from my view was also required. I bade them goodbye as I went back to my office.
The encounter generally was successful as I had a portion of how one feels to have a member of family being disable. I will have to buy Emma a commode wheel chair and a pair of adjustable elbow crutches. For Christine, I will find a professional to take care of Emma while she is out working.
The next stop was to go to my aunt’s house. I found Josephine digging her vegetable garden. She was surprised to see me as shown by her face.
Josephine: Welcome Wayne, what do I owe this surprise visit?
Me: No problem Aunt, I just felt that is should visit you. It’s been a long time you know!
Josephine: Ok. Welcome inside.
Me: Thank you very much. How have you been doing? How is Kelvin doing?
Josephine: Just struggling as usual. Nothing is getting better as days proceed. Anyway, that is life. Kelvin is fine he is in his room.
Me: Josephine, I am here on a special mission. I want to know (that is if you don’t mind) how you feel having your only son being disable, what is your daily chores with respect to him.
Josephine: Wayne, if you don’t have anything to say, just get out and mind your business.
Me: Ok, I will go but at least let me see Kelvin.
Josephine then went and called Kelvin for me. Kelvin looked disturbed but he managed to stay calm. After a few moments of gestures I called Josephine and asked him to allow me go into Kelvin’s room which she didn’t object.
In Kelvin’s room, I noticed that Kelvin was locked indoors not to go out as he might get lost. He only slept in his room. The only time he goes out is when going to bathroom and toilet. All other activities are within his room. I felt I should speak to my aunt whether she will like it or not since the environment where Kevin lives is unfriendly.
Me: Give me a little of you time so that I can elaborate the real reason why I am here.
Josephine: Ok go ahead, you have five minutes.
Me: Thanks a lot, you know Kelvin being deaf doesn’t mean he has lost all in life, he has opportunities in life like his age mates. He should be given opportunity to socialize with others so that he can develop himself socially. Locking him up in his room will only make him worse and would not know the real meaning of life. Now, I want to help you if you’re ready.
Josephine: How will you help me?
Me: Let me first ask you some questions and answer me frankly.
Me: Tell me what you feel having your only son being a deaf, what do you go through every day to ensure he is fine and apart from parental responsibilities, what other responsibilities and challenges have you experienced with regards to Kelvin.
Josephine: Having a disable son has driven me insane; I asked myself why these happened to me. I feel ashamed of myself and it’s like I have failed in my life. He doesn’t talk to anybody since he doesn’t hear anything. Sometimes I don’t understand him and I might not get what he means. So I find it better to lock him in his room so that he cannot be a nuisance to me.
Me: Thanks for speaking your heart out. First, you have to thank God for giving you such child. You cannot be ashamed of yourself. Think of people who have struggled to have their own children but they couldn’t. Being disable, Kelvin doesn’t mean he cannot do anything constructive in life, allow him to socialize and play with his age mates and schoolmates so that he can get to know his true self. Leave him to choose what he wants in life. Above all you have to learn to communicate well with him since communication opens almost all the doors.
Josephine: Thanks for your inspiring words. How do I get to learn to communicate with hands? I don’t know anything…?
Me: I will help you to learn the sign language. I will hire somebody for you to train you on such. Any assistance you may need, do not hesitate to let me know.
Josephine: Thanks a lot. I am so sorry for my initial attitude towards you. I am really sorry.
Me: No problem aunty. Everything is ok. Let me go we will communicate. Thanks a lot.
I left my aunt’s house and felt that I could do a lot more to help my aunt. I have to find a way of getting her employed so that she will be able to take good care of her son. Though at the beginning I felt my mission has failed, it had finally succeeded and is very happy. Putting myself in her shoes, her husband left her when he realized that their son was deaf. Now she lives a depressed life. I will do anything to help them.
The next planning I scheduled to take place in two weeks time from the day I first visited. But first I had to talk to persons who had a experience dealing with disable children. To request them that I needed her to help Christine and my aunt Josephine to take care of their children while they are away. I knew this was going to be a hard task for me but my feelings to help couldn’t allow me to back down. I talked to these girls and they agreed to do that job for me.
I embarked on buying the requirements for the kids, Emma needed a wheel chair and crutches while Kelvin needed nothing but I felt I should buy him a bike which will enable him interact much with his age mates. Also a ball was necessary since it will engage him in trying to talk to his friends. After buying all these things which deemed necessary, I picked the girls to accompany me and possibly to start their duties.
We started visiting Christine; we found her preparing food for her daughter as her other children had taken a walk. She was happy to see us. She served us with lunch then thereafter I presented the things I had bought for Emma. Emma herself felt very happy and thankful. I presented the commode chair and showed them that she can relief herself without necessarily getting out of the wheel chair. For Christine, I introduced to her the lady who was to take care of her daughter to enable her work harder to provide. Thereafter we bade each other good bye and I promised to sometimes pass by to see how they are doing.
The next stop was my auntie’s house, unlike the last time; she was excited to see me this time round. She welcomed us very much and welcomed us inside. Kelvin on the other hand was playing with a child’s neighbor inside his room. When Kelvin saw me, he was very happy. I hugged him and smiled to each other. After a short conversation with my aunt, I introduced Mary, the lady who will teach her the sign language to enable her communicate well with her son. I handed Kelvin the bike and the ball and gestured to him to go and play with her friend outside. I bade my aunty good bye and promised to come sometimes to check on them. I assured her that I will always be of help when she needs me.
After all this was over, I realized that people having members of their families being disable perceive this fact in different ways but above all, they have a lot of challenges. Despite these challenges, they must live. Christine seems to accept the fact that her daughter was disable and would do anything to make her comfortable. My aunt on the other hand viewed this as a curse and felt her life was all shameful.
learned that we should be of help to these people as we see, they have a lot of challenges and need to be encouraged to live a happy life’s like others. In general, my mission proved successful and I feel like doing more of things like this to these members.
Dealing with Disable Children and their families