Caring for a child with a disability
“IMAGINE you being an intelligent person, but your body is not able to do what it needs to do. You see the cup of juice, you want the cup of juice, your brain says let’s get that cup of juice, but your limbs refuse to move or they move in a haphazard way. It’s frustrating,” expressed Dr Kay-Ann Bookall, loving single mother of a passionate, smart 13-year-old boy with cerebral palsy. We will call him Tommy to protect his identity.
“I witness that frustration with growing him. He would be frustrated and start crying,” the physician & university lecturer explained.
Additionally, people’s attitudes can be quite off-putting.
“I remember going to KFC (before the pandemic) and he was eating, and because he drools the worker started saying, ‘yuh see seh him drooling?’ Clearly I see it. He is right in front of me. People’s attitude is a major challenge,” the good-natured doctor said.
Dr Bookall adopted Tommy over 18 months ago and has been very committed to helping him gain regular functioning. “In order to attain regular functioning he needs a lot of assistive devices – some children need more assistive devices than he does but he does need help to walk. His fine motor skills have improved and we try and encourage him to do as much on his own as possible. He can feed himself – some kids with disabilities are unable to feed themselves. And he can go to the bathroom for himself. He can learn. He can put on his clothes for himself. He can play his favourite YouTube video for himself,” Dr Bookall listed proudly.
Indeed, the single mother enjoys many positive, gratifying moments on her journey as parent of a child with a disability.
“When he finally does something that he couldn’t do before, there is a sense of accomplishment that ‘yes I can do it.’ Of course, progress builds Tommy’s confidence. ‘See I can do it. I can learn. I am smart,’ he would conclude. You don’t take the simple things for granted anymore. You appreciate those things. It brings joy to my heart like any parent to see their child successful at something. It gives me great joy when he sings a gospel song from start to finish. He has a good affinity for music and he catches on really quickly.”
The arts are in fact key to improving Tommy’s functioning.
“It has been proven that the arts, whether it be music or drawing, helps children with disability express themselves because again people who don’t have a disability have a hard enough time expressing what they feel, can you imagine a child with a disability? So it helps them to become emotionally stable and it helps their fine motor skills which it has with my child. So I send him to music class and I have seen improvements with how he uses his hands. And he paints his frustration. He paints his joy. He is so focused, and from the colours he chooses and where he puts each stroke you can see that he is very intentional. So, yes, I see improvement,” Dr Bookall, also an avid painter, revealed.
But the jovial doctor admits that raising a child with a disability can be very challenging. That’s why a loving community is so important.
“I don’t like to ask for help and it has blown me away how certain people just see Tommy and fall in love with him and want to help. My friends who help at church, for example Peter, who comes and takes care of Tommy the whole time that I am at church so that I can focus on the Word, and Tommy also gets some male interaction. It really helps,” she smiled.
Of course, financial help is crucial. “People helping out financially is a big deal, because with the amount of doctors’ visits, assisted devices that you need, parents with a child with disability end up being bankrupt because the cost of care far outweighs their income,” she explained, adding that, thankfully, there is now assistance from the government. “If I didn’t have that I wouldn’t be able to do things that I do with Tommy at all. Our government helps with a shadow (school assistant) and they do provide school fee and I am grateful for that,” she shared.
The big-hearted single mother concluded that, “It takes a community to raise a child, even moreso a child with a disability. Just having people around (is essential) because you can get burnout. You are doing a lot more things and you really don’t get a break, so I am cherishing community that comes around me. It’s amazing.”
Mother of four girls, Shelly-Ann Harris is author of God’s Woman , president & founder of Family and Faith Magazine , and a media, communication, change management professional. Connect with her on Twitter @Harrisshellyann.
