Walking in the Shoes of My Ward: Story of Supporting People with Disability - CUHK MDW

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Walking in the Shoes of My Ward: Story of Supporting People with Disability

13 May, 2024

Written by Inna Abrogena

Edited by Michelle Yau

Updated on 20 April 2023

Is your ward diagnosed with a developmental disability like autism, ADHD, intellectual disability, or cerebral palsy?

Perhaps they don’t have a diagnosis but show severe intellectual difficulty or they cannot do daily self-care tasks independently compared to others their age. Developmental disability refers to severe and chronic disability of an individual who has a mental or physical impairment from childhood and is likely to continue indefinitely which leads to great limitations in life. This is why parents or family members of persons with developmental disabilities really need your support to provide care for your ward.
Similar to starting work for any new family, there is a lot to learn about your ward, the family members, the dynamic of their relationships with each other, and where you fit in. In this article, let’s talk about how to get to know your ward better and how to talk to your employers about your ward.

Get to know your ward as an individual.

If you have never met or cared for a person with a developmental disability, working and living with them can seem very overwhelming. I have worked with people with disabilities for almost a decade and what has been the most helpful for me is having the mindset of, “They are people who are no different from me.” This means that even if your ward has a disability, we all have the same needs and wants–to be happy, loved, and feel safe. When I started adopting this mindset, working with them felt less overwhelming and felt less like a burden.
One of the women I have worked with recently has severe cerebral palsy. She has very poor cognitive ability and she cannot speak. She cannot move most of her body by herself and so she cannot do any daily tasks independently and she uses a wheelchair. It was very difficult to know how to interact with her because she could not respond verbally or through gesturing or pointing. Approaching her with the mindset that she is no different from me and that she also has similar wants and needs as myself, I would treat her similarly as any other person. I would greet her hello and talk to her even if she cannot respond because by having her see and listen to my voice, we can be more familiar with each other. It took me a few weeks but with enough observation, I was able to become more familiar with her facial expressions and what they may mean. By presenting her with different activities she can participate in such as watching videos, listening to music, assisted arts and crafts, I can better understand her own likes and dislikes and adjust. This goes to show that no matter how severe your ward’s disability is, they are still similar to us in many ways and we can interact and build a relationship with them as with any other person.

Sometimes what can also help you get to know your ward is through doing research and asking for help.

Picture illustrated by Inna Abrogena
Many years ago when I was volunteering at a shelter for abandoned boys and men with disabilities, I was assigned to work with a man who was recently brought to the shelter after being found left alone at a bus terminal. He has severe intellectual disability but has no physical limitations. He cannot speak and he does not show any interest in activities aside from basic daily needs such as eating food, sleeping, and going to the toilet. It was very challenging because it feels like we do not connect and he ignores any activity I try to engage him in like drawing, coloring, music, or games. And since he had no ID or other information, we also don’t know his diagnosis and anything about his background. I asked for advice from my supervisor and what she told me was really helpful and gave me motivation to keep going. She said, “I understand working with him is difficult because nothing seems to work but give it time and don’t rush. What you’re doing now–talking to him, being with him, trying to play games with him–is already helping him even if you cannot see any outward change.”

When working with people with disabilities, try to connect with them as individuals

Afterwards, I tried to research what games do people with special needs in general like to play and one of the suggestions is to do jigsaw puzzles. Because of the man’s severe intellectual disability, I doubted he could do it but still, I looked for a very easy puzzle for young kids with only 12 pieces. I planned to do it together with him and help him but to my and everyone’s surprise, he immediately knew what to do! His eyes were wide while his hands moved quickly to put the puzzle pieces together and in no time at all, he was able to complete it! I remember feeling so moved because I realized if we didn’t give it a try, believing that he cannot do this because of his disability, then we wouldn’t know how skilled and talented he is.
To sum it up, when working with people with disabilities, try to connect with them as individuals. They each have their own wants, skills, and preferences just like you have your own. And much like us, they also get stressed, anxious, and have bad days. The more time we spend with them, we will get to know them better and how best to interact with them. Give it time because there is no need to rush.

Ask the family members about your ward’s disability.

Another good way to learn how to care for your ward with disability is by talking with your employer. Most employers will disclose about the ward’s disability when looking for a helper but may not give you all of the details before you begin your work. Sometimes the family members may not disclose it to you or it may take time for them to be able to brief you with all of the things you need to know. If this is your first time caring for a ward with disability, it will be better to ask your employer about the needs of your ward so that you can provide the best care. Make sure to write it in a notebook or paper so that you can always refer back to it.
Things to ask your employer:
● What is the diagnosis of your ward?
● Any health/medical condition you need to be aware of? (E.g. epilepsy)
● Any medication for your ward and when are they taken?
● What is the diet of your ward? Any food to avoid?
● How does your ward communicate their needs? (E.g. few words, gestures, etc.)
● What activities does your ward like to do? And what activities do they dislike?
● What makes your ward upset? What calms them down when they get upset?
● What is their daily routine?
● What activities does your ward need physical support? (e.g. dressing up, feeding, bathing)
● What behavioral challenges does your ward have? (E.g. breaking things in the house, screaming, playing with switches at home)

With enough time with your ward, you may even learn things about your ward which can be new information to their parents or family members. Keep them updated not only when there are problems but also when your ward has made some progress! To conclude, caring for a ward with a disability is challenging and sometimes it can be very stressful or lonely.

At the same time it can be very rewarding because of how much your support means to your ward and their family. You are making a real impact in your ward’s life. Give yourself a pat on the back for doing the best you can!

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