WITH World Physical Therapy Day set for this Saturday, the Disability and Rehabilitation unit of the Ministry of Public Health (MoPH) on Wednesday held a support group session for parents of special needs children, at Cara Lodge, Quamina Street.

Some 25 parents of children with disabilities, particularly microcephaly, were hosted at the event which aimed to show the parents that they are not alone, and remind them that there are ways to deal with the psychological challenges of handling a child with disability.
“The main goal is to help the parents cope, show them coping skills, and to speak to the; sometimes it’s hard and you just want someone to listen to you. Disability, it will not go away, it is life-long, so they will need the psychological support. They will develop a lot of anxiety and depression, this is not an easy thing to deal with. To have a child who is disabled, and have to basically do everything for them, every day for the rest of their lives, it’s hard, so we’re here to give them the emotional support,” explained Ariane Mangar, Director of the Disability and Rehabilitation unit, and president of the Guyana Physio Association.

Several psychologists were on hand at the event to speak with the parents on how to cope and keep themselves going, through their daily struggle of loving and caring for their children. The programme saw talks being delivered by psychologists Dr Renita Savory and Dr Diana Carratge.

A few parents attending the events shared their story of how hard it has been for them.
“I feel real bad, I cry, I cry a lot of times because people was telling me a lot of things, that she wouldn’t live, that she wouldn’t look like a child, she would look like something else. So I cry a lot, but now I can’t do without her,” attested Davie Hussein, whose 20-month-old daughter suffers from microcephaly.

Microcephaly is a condition where the head is smaller than normal. Other symptoms include  dwarfism or short stature, delayed motor and speech functions, mental retardation, seizures, facial distortions, hyperactivity, balance and coordination problems, and other brain-related or neurological problems. Hussein learnt about her daughter’s condition when she was 32 weeks pregnant.

“I found out she had microcephaly from the ultrasound, that’s when I find out about it, and I was thinking there might have been a cure, but there’s no cure for it,” Hussein recalled.
Oneka Charles’ two-year-old son suffers from a brain problem, he does not walk or talk, he is her only child. She first began to suspect a problem with her son when he was four months old; she was eventually referred to the Georgetown Public Hospital where a brain scan confirmed her fears.

It brings her almost to tears to speak of how much it pains her to see her child like that.
“I feel sorry for he. He can’t sit by he self, most of the time he cry, if people deh round he don’t cry, but when you put him down he cry. If he see people he would make sound, but he can’t talk,” she shared.

The children themselves are at varying stages of physiotherapy being offered through the MoPH, to see how close to normal the children can become, despite their condition.

““It depends on which developmental stage the child is at. So if the child cannot hold up their head we will work on holding up their head, then to get them sitting if they can’t sit. Once we get them sitting, then we want them to interact, we want them to roll over, we want them to do everything that a normal child can do. But they usually need help to be able to do it. They all present differently, so there’s no one protocol for all, but we try to get them as close to normal as possible,” Mangar said.

This is not the first time the ministry has embarked on a support group of this kind, but it is the first time in a long time that one has been held.