In this installment of Our Stories, community activist and youth leader, Kereen Allen shares how she has been able to raise her son with Cerebral Palsy. For many people, Jamaica is pictured as an island paradise – white sandy beaches, a beautiful and vivacious culture, rich and wholesome food, and attractive people. And while that image is not far from the truth, if the lens is focused on the inspirational stories of ordinary Jamaicans, you’d find a sharper, richer and truer image of the Jamaican experience…this is Our Stories!
Meet Kereen Allen
Updated reports show that 79.9% of women plan for their first child with their spouse. Kereen Allen was among these women. With a catastrophic Caesarian section and seeing doctors trying to resuscitate her child as he came into the world without the breath of life. At that moment the most important thing to her was getting the chance to touch and hold her newborn baby as doctors rushed out with him.
When pregnant, some women dream of having a safe delivery and a healthy baby, especially if during prenatal you are told that your baby is safe, so you now feel at ease with not much to worry about than hopes of a safe delivery. Kereen Allen learned that her child was diagnosed with Cerebral Palsy, which she later was educated on. This group of disorder that affects her child’s mobility is caused by his body’s inability to get enough oxygen to the brain.
Not every child with this condition looks or even behave the same. Cerebral Palsy may differ due to which part of the brain is affected by the condition, however, each person diagnosed can have the opportunity to live a more comfortable and meaningful future, with the help and support of families and friends. Let us see how Kereen was able to raise a child who was born different along with the struggles she faced as a single mother while providing for the rest of her family.
1. How early did you find out that he would not be different? Moreover, how did it make you feel?
Up until two days after my son Keanu was born, he was still being peruse by doctors in the Intensive labour care room. Later on I was inform that due to complications caused from labour
my son almost died, and they had to keep him in order to commence observation. She continued to say when I realize that, my child was sick; I was left with more questions that answer. As doctors tried to figure out what was wrong with my baby I wondered to myself how and what could have caused something like this to happen to me.
2. Is Cerebral Palsy a genetic disease?
According to what I was told, it is caused by a few risk factors such as prematurity, low birth weight, blood clotting in both mother and child, complications with the placenta or bacterial and viral infection. Up until now, it has not been confirmed about the specific reason but I can tell you that none of my other children, family member or myself was born with this complex disorder.
3. How is Keanu’s case of Cerebral Palsy described?
Keanu has the type of Cerebral Palsy that causes him to lose mobility on one side and this also affect the way he speaks. He has a form of motor disorder that hinders him from walking properly so it is a bit complicated for him to walk strongly on his own.
4. Is he able to speak?
His speech pattern was damaged by the injury to his brain so even understanding somethings can be a challenge, but he does speak enough and communicate with others and they understand him. Being his mother, I do understand him most of the time, because as a mother no matter if your child is deaf, blind or dumb we will find ways to communicate with our child or children.
5. What have you learnt about caring for a child with Cerebral Palsy?
I learnt that his development would have being a little slower than the average child, but I to have patient with him, he walked when he was 5 years old so I had to devote my attention and focused fully on him. The other children were not born until years later, so I had that time where I could spend with him.
6. How is caring for Keanu different from caring for your other children?
He is not able to take care of himself! At 22 years old, he still have the brain of [a] 9 years old. When he was younger, he had to constantly be monitored. Even at his age now when given task he is easily distracted and because of the dysfunction of one side, he moves a bit slower. Things, like brushing teeth, or even walking, is hard for him. Back then, I experienced a significant amount of depression, fear, and anxiety. As a mother, I loved my child but it brought about a lot of question, which I had to prepare myself for mentally and physically which was something I never had to do for any of my others children.
7. How does this take away time from your other children?
It doesn’t that much because, I get my other children involved in his life; this way no one feels left out. Whatever we have to do we do it together as a family. I know sometimes they might feel away that I always gone on the road with him, however they do under[stand] that these visits are not that of a social one. Sometime I even bring them to the doctor with me. Keanu is my first son so the others are a bit younger, the good thing about it is that I am a full time stay at home mom, the bad thing is that it weighs me down financially, but I still move forward serving and thriving even in my worst times.
8. How does Keanu interact he is meeting for the first time?
Keanu is very sociable and vibrant even with his disorder. He is treated just as a regular kid; because of his disorder, he moves a bit slower. He spreads his bed and clean his room and he does it nicely. Whenever I go out with him, he makes friends more than I do and he attracts the girls. Always loves to look clean. When he was growing up there was some rough questions asked, some that even I myself could not answer at that time, because I was just learning about his condition. Now he has become [older], people ask less and just socialize with him, because has grown into a wonderful young man.
9. Does Keanu have a regular social life?
Keanu is loved by everyone in the community to be honest, but I am afraid that he will never get married or even have any intimate relationship with a wife or girlfriend. I am looking at the reality of it from a parent’s standpoint. I have too just prepare myself to take care of him as long as he needs me. One thing about him is that he is confident that he can live a normal life but I am a bit scared for him.
10. He makes friends easily, does any of them stick around?
The people them love him, however no one comes and check him or even come to hang out with him at home. Keanu does not have a circle of friends like that, but he does bathe in the evening and puts on his nice clean clothes and just go hang out with some of the regular young adults. Sharing in a joke or just watching the entertainment around WaterHouse and not because of his condition, he does not want me to stop him, because he is now saying to me, ‘mommy man now’ You know what that means right? (chuckles)
11. Does his father offer support?
Keanu is now 22 years and I am the main supporter of him and my other two children.
His father not so much in the picture a hundred percent, sometimes he shows up, other times I do not see him. He is the father of all my children, however, he still have others outside.
12. How does this affect you financially?
It affects me financially because I am a single parent and I have to be at home with him most of the time, because I have to be monitoring him and ensuring that he gets the attention that his required because he is not so abled-body like the other children.
13. Does he have any special skills that could assist him with getting a job?
Yes, the institution that he use to attend taught them quite a few skills set which includes sewing and painting. He learnt to sew using a machine so with some support he could start a career in tailoring
14. With the right financial support, does he have a chance of increasing his mobility?
He has been through many programs including; early stimulation program, St.John Golding program, physiotherapist. He has come a far from where he started. I am trying to get him involved in a skilled area so it can help him build up his self-confidence. I love my son and I only want the best of him. I believe that and hope one day he will have the opportunity to get a regular job.
15. Where do you see your family in the next 5 years?
I would want my son to have a job and live a better life, but I still have an open mind that I might have to take care of him so I have made up my mind, no matter the age. I would love if there will be more job opportunity for persons with his disorder.
Thank you for sharing your story Kereen! You’re a strong woman.
Stories like these are very inspiring. While not everyone can commit to a child with a disability it is nice to know that some parents have the strength an support to dedicate their lives to children with special needs.