By Naomi Marshall

CEREBRAL palsy is a disorder that prevents persons from speaking, walking or even writing at times, But Usha Persuad and Lorette Payne are mothers who refuse to let this disorder prevent their daughters from becoming academically successful.

Three months after giving birth to a beautiful baby girl by the name of Rajni Persaud, Usha observed that her daughter was not doing things a normal three-year-old should do.
Subsequently, Rajni was diagnosed with Cerebral palsy at only six-months-old.

According to Michigan Cerebral Palsy attorneys, Cerebral palsy is a term that refers to “a group of non-progressive motor conditions often caused by brain damage.” These disorders are characterised by a loss or impairment of body movement, reflexes, balance, muscle control, muscle coordination, muscle tone, and posture. There are four types of Cerebral Palsy – Spastic, Ataxic, Dyskinetic and Mixed Cerebral Palsy.

In Rajni’s case, she has spastic triplegia cerebral palsy which causes stiffness in the muscles of the lower parts of her body, particularly her legs, in addition to her left arm. As such, she depends heavily on a wheelchair to move around.

After deciding to send her daughter to school, Usha recalled having to push her daughter in a wheelchair from one village to another in order for Rajni to have nursery and primary education.

Running tired of the hassle to get Rajni to school, Usha had decided not to send her daughter to secondary school after Rajni came out successful at the National Grade Six Assessment, copping a spot at St. Joseph High School.

“When she write Common Entrance I didn’t decide to send her to school back, tell you the honest truth. I use to walk from here (Coldingen), pushing her in a wheelchair from here to meet Enterprise Primary School, everyday fah go and come. When the rain fall then we tek taxi,” Usha said.

Usha described transportation as one of her challenges, calling it a “sacrifice”.
However, with motivation from others, Usha allowed her daughter to attend President’s College instead because of the availability of transportation, and as a result she paid $5,000 per week for a taxi to take Rajni to school. It paid off, Rajni graduated from President’s College in 2017 with eight Grade Ones and three Grade Twos.

Determined to give her daughter a fair chance of attending university, Usha and her husband Khanai, agreed to foot the hefty taxi bill.

Today, 18-year-old Rajni is a first-year student of the University of Guyana, who is pursuing a Diploma in Accounting. However, transportation still remains an issue, says Usha.

“It’s really expensive, to be honest for a week it’s $18,000 I pay now for UG. When she used to go President’s College I used to pay $5,000 a week, every week,” said the mother, who has given up working to facilitate the movement of her daughter.
In addition to taking her daughter to university, Usha also sits in Rajni’s classes in order to make her daughter feel comfortable.

“When I take her to UG I stay there because I think she’s more comfortable for me to be there with her, than just carry her and leave her. She wouldn’t be comfortable there, and I usually see her go from class to class and if I need assistance I ask anybody there to help her. The students there they do assist,” the mother, who has given up working to accommodate her daughter, explained.

In order to involve her daughter in society, Usha would take her daughter to the movies, zoo, mall and the park. The mother of two is advising parents of children with disabilities to involve them in society.

“I am telling people that have disabled children [that] they should come out. I know it’s hard but someday it will pay off. I think many parents don’t take out their children that have disability. When you go out there, everybody is not positive but I think if more parents go out with their children and meet with people out there, there can be changes for people with disability. Because with people’s advice that I am getting that’s why I am this far with her,” Usha said.

Usha expressed sincere gratitude to the teachers of President College, Sir Daeraj, Enterprise Nursery and Primary School and to Ganesh Singh.
While Rajni has spastic triplegia cerebral palsy and cannot walk, 13-year-old Trinity Payne of Linden was diagnosed with Spastic quadriplegia – a disorder that affects all four limbs, however, therapy has enabled her to walk. She, on the other hand, does not speak.

TOP PERFORMER
With the help of her mother, Lorette Payne, a teacher, Trinity has remained the top performer of her class at Harmony Secondary in Linden.

Lorette has been the main source of communication between Trinity and the school system, using her limited knowledge of sign language to teach her daughter.
Just like Usha, Lorette observed that her three- month-old daughter was not doing the things a normal baby her age should be doing, afterwards, Trinity was diagnosed with Cerebral palsy.

“I know that at three months a baby was supposed to be holding up her head and I wasn’t seeing that, and I was noticing that she used one side more than the next side. She was born in August and this was the November, we went to a private doctor and as soon as the doctor saw her, he told us that the condition was Cerebral Palsy,” Lorette told this newspaper.

Being told that her firstborn may walk until age five and may not speak, Lorette felt devastated.

“When I found out that this is what she had, that was really devastating to me, because I’m like ‘God why me”’,” she expressed.

Lorette placed her daughter in the mainstream education and set out to ensure her daughter does her best in the education sector. Lorette started writing her daughter’s school notes since writing became difficult for her.
“The writing part was a little difficult, sometimes I would have to go and write for her when I go to collect her, or collect somebody’s book to get the notes,” Lorette said.
Due to her daughter not being able to speak, Lorette proceeded to learn sign language in order to communicate with her daughter, however, Lorette noted that her knowledge of signing is limited.

She said, “Because of her disability I end up going to check out to see how I can best communicate with her with signs. I was able to teach her the alphabet, days of the week, months of the year and all those. For Grade six, like I said, I would normally go in from time to time and collect the notes and work with her.”

Being a teacher at Harmony Secondary School, the same school that Trinity attends, Lorette shared with the Pepperpot Magazine how she prepares her daughter for exams.
“I’m at the school so I would help out with her, if she has a test or so, we would study the night before and then I would work with here at the test, taking into consideration, persons might say oh you cheating for your child,” Lorette noted.

But she stated that getting persons to sign for Trinity is difficult, which is one of the reasons she delayed attending the University of Guyana.
She said, “This is one of the reasons that I delayed going to the university because I’m thinking there is nothing, nobody is there, no interpreter for her at the school.”
Lorette also shared that she delayed having another child for years because she wanted to place her attention on herTrinity.

The mother of two is urging “persons who have a child with disability, they need family support because if you ain’t get your own to help you, who else will help you, and that is one of the things I got from my family and my husband’s family.”
She has also encouraged parents to “push” for their children and to “appreciate” them.