Challenged financially with the task of caring for her 19-year-old son who has cerebral palsy has forced Alethia Buckley to make tough decisions, such as sacrificing the education of her other children.

The 47-year-old mother of five, who also cares for her godson whose father struggles with mental health and mother is deceased, said it was the intervention of the Early Stimulation Programme (ESP) on Hanover Street in Kingston that has helped her to make ends meet monthly.

But there are certain necessities that would make her living condition easier, which she simply cannot afford. One of those needs is a special wheelchair designed to carry her son with the disability, Miguel Heslop, around.

“That would be the best gift for Christmas. I cannot place him in a normal wheelchair because he cannot sit up. I would need a special needs chair with the straps for his chest and his waist, but I cannot afford a chair like that,” she told the Sunday Observer.

“I used to carry him on my back, but I am having a lot of back pains, so I don’t carry him up and about anymore and he is just trapped inside the house and that’s not good for him. Him small but weighty, so it is not easy for someone to lift him up and carry him,” said Buckley.

“As simple as it may sound, it is really difficult for me. If the Government had a place we could go to get second-hand special chairs, it would be great,” she said.

She mentioned that when Miguel was much younger, she would transport him in a baby stroller before receiving a second-hand special-needs wheelchair.

“One of the mothers from ESP had a special chair and she gave it to me as she got a new one for her child, but it began to rust and started to affect Miguel’s skin, and the straps were not holding him in place properly. I tried to get someone to transform a stroller, but it was very expensive,” she explained.

Addtionally, due to the severity of her son’s disorder that affects muscle tone, movement, and motor skills, he is unable to talk, eat independently, and is not being potty trained, which causes him to demand 24-hour care.

A visit to Buckley’s two-bedroom board house in Tapper Hill, Rock Hall, in St Andrew, where she has lived for the past 20 years, revealed a leaky roof, no running water, torn ceiling, and an outside bathroom. She took the Sunday Observer team to one of the rooms, where Miguel was seen lying on a bed looking on attentively.

She explained that after realising her social and financial struggles, the ESP, which offers assistance to children up to six years old with various types of developmental disabilities, decided to offer consistent support even though her son has passed the age limit.

“The ESP started assisting when Miguel was about two years old. When I went there with my referral I didn’t know what to expect there. They examined him and started sessions with him, and they taught me how to feed him because whenever you put the meal in his mouth he pushes it out,” she said.

“They also assist me with meals at times, clothing and diapers. They have been sticking with me through thick and thin, and if it wasn’t for them, I wouldn’t be where I am today. Having a child with disability and other kids are around and you are not financially stable can be really depressing,” she said.

She said she was provided with a job from the programme as a shadow assistant, but more than half her pay is used for transportation cost, which is approximately $1,200 per day, and the remainder for groceries, making it difficult to send her other children to school consistently.

“Sometimes I can’t even send the rest of kids to school because mi affi mek sure Miguel have enough pampers, meals, cause he eats a lot. The other day I got a complaint from the school saying one of my son is absent too often, but if he should go to school for the whole week, Miguel probably won’t have any pampers or not enough to eat,” she said, noting that Miguel’s dad and relatives provide support occasionally.

Only one of her sons, aged 15, and her 17-year-old godson are attending school, while her two daughters, aged 24 and 21, and her other son, who is 27, would visit and offer assistance with Miguel.

She mentioned that even her older children endured the same challenge of attending school regularly, which hindered their chances of pursuing their dreams.

“Mi would stop one of the girls today and another one tomorrow. It really affected their studies because both of them have left school with no CXC [Caribbean Examinations Council]. Now they both want to do a skill, one want to do practical nursing and the other want to do cosmetology, and I can’t even afford it, so they are just there,” she said.

“When I check out practical nursing, some schools say $80,000 while some say $100,000, and the cosmetology is from $40,000 up. Getting the registration fee is no problem but getting the resources for school and sending them would be the issue. Sometimes I blame myself for not letting them get the education they should have,” she added.

Despite not being able to provide for her children in abundance, she said she is grateful for the journey and assistance she has received so far.

“I cannot afford beyond giving meals and clothes. There is nothing more I can do for him and there is so much more that he needs. If he was getting physiotherapy, maybe he would be able to hold a cup right now or sit up on his own, but because I cannot afford to take him to a physiotherapy or get home visits because of the transportation cost, he has been bedridden for the last eight years,” she said.

“My greatest fear is if something should happen to him. It would be really traumatising, but the help and comfort from the ESP has helped me to work through the situation I am in. I may not have much, but I am trying to do the best I can for my family,” she said as tears streamed down her face.