Wed | Sep 20, 2017

'S' is for super mom

Published:Sunday | May 8, 2016 | 5:00 AMJody-Anne Lawrence and Kimberly Goodall
Ingrid Drummond and her daughter Gracie-Ann.
Gracie-Ann was not diagnosed with Cerebral Palsy until she was two years old.
Harris and her now nine year old twins.
Harris' twins Shantoi and Samoi
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What makes someone a superwoman? For us, it's not about her physical strength but the strength of her heart and her power to overcome. To celebrate Mother's Day, we take a look at two mothers who are really super in many ways as they conquer battle after battle every day while nurturing and loving their children with special needs. In our books, they are true superwomen.

Ingrid Drummond

Ingrid Drummond, mother to six-year-old Gracie-Ann Williams, is the epitome of strength. She has experienced every mother's fear - having a child born with special needs.

At the age of 30, on April 7, 2010, Drummond went into labour a month earlier than expected. During delivery, she found out that she had lost one of her blessings (one of twins she had been carrying) four days before, and had no idea. One would think it could not have got any worse, but the heartache did not stop there for her.

On the day she was released from the hospital, Drummond realised that Gracie-Ann, her surviving twin's head constantly tilted to one side. Though concerned, she hoped for the best and watched and waited. At two months, Gracie-Ann was not reaching her milestones. In addition, her head was always upward, her hands were stiff and she never smiled. Drummond took her to a paediatrician, who decided to watch her for another four to five months.

After seeing no improvement during that time, Drummond was referred to a paediatric neurologist at the University Hospital of the West Indies (UHWI). There, Gracie-Ann began receiving therapy for her stiff limbs but at six months she became very ill with meningitis and was admitted to the Bustamante Hospital for Children.

As Drummond recalled the experience to Outlook, she told us of her first true meltdown. While at the hospital, she overhead the doctor refer to her daughter as a "CP baby". Even as an early-childhood educator who has worked with special-needs children, she had no knowledge or experience with cerebral palsy. With that, she went home, did her research and sought advice.

She felt completely helpless, especially after her husband who had vowed to be there for better or worse, learnt of their daughter's illness and was less than supportive. "I felt like I had no one and no support. I had sleepless nights and no one to help with Gracie."

Cerebral palsy is a disease that can be hard to diagnose as some of its symptoms are similar to other illnesses. For this reason, Gracie-Ann visited a number of doctors and was not diagnosed with until 2012, when she was two years old and referred to Professor Robert Gray and Dr Roxanne Melbourne Chambers.

Even though caring for Gracie-Ann is difficult, Drummond takes pride in caring for her daughter. She had to give up her job to be the sole care provider for her daughter. As a result of her financial constraints, she is not able to send her to a special-needs school, but still has faith in the unknown.

"I don't cope 100 per cent, but I have formed a support group that will not only help me but support other mothers out there like me," she expressed.

On May 7, she launched the Gracie's Hope support group, which happens to be Drummond's birthday. She looks to this day to stand for hope, faith and joy.

To learn more about the support group, visit https://m.facebook.com/Gracies-Hope-464163280433475/

Samantha Harris

 

Finding out that she was pregnant was a joyous moment for Samantha Harris. She was even more thrilled when she found out that she was having twins.

But Harris' world was turned upside down when her daughters were born and one contracted meningitis and the other, hydrocephalus (water on her brain).

Shantoi was diagnosed with hydrocephalus when she was only a few months old. Harris' initial reaction was fear - fear of what would happen to her daughter and what it would take to make her better.

Then there was Samoi with meningitis. She was plagued with guilt that she was not able to pay as much attention to her she would have liked.

When Shantoi was only eight months old, she had to do a ventriculostomy (making a hole in a cerebral ventricle to drain the fluid). Harris remembers her being in the intensive care unit for months. The visits were hectic, but she could not miss a day without seeing her baby girl. One day, she was ill and not able to visit her at the hospital on the Sunday but was there first thing Monday morning.

"I knew her eyes hurt but she opened them and looked straight at me. It was as if she knew I was not there the day before and she was saying that to me. She looked at me as if to say she knew I was there now and then closed them," Harris recalled to Outlook.

But she was confident that her daughter would fight through it; and she did fight. She had to visit almost every clinic in the hospital from the eye clinic to a neurologist.

But despite her numerous health issues, Harris admits that she was in denial, she enrolled her daughter in a regular prep school with the expectation that she would keep up.

"It was not until I became a mother that I was made aware that by a certain age a child needed to know certain things. She was behind, and because of her illness, that school was just not the right fit and they were no longer able to accommodate her," Harris said.

She moved her daughter to Stimulation Plus at the age of five. There they were better equipped to assist her. But as Shantoi began to improve, Samoi began lagging in school. "They are identical twins, so I was not sure what was the cause. However, the doctor admitted that the separation could have affected her; it could also be as a result of the meningitis that she had as a baby," she mentioned.

It is remarkable how Shantoi recovered, but even more so the amount of faith Harris had that she would. She said that what held her together all this time was the belief that her daughter would make it. The now seven-year-old is a vivacious bundle of joy. She still requires observation, being troubled with fevers, and Harris has to ensure that she does not get an infection in the area that she had surgery done.

"It is hard, but the thing that keeps me going is my daughter. She did not have to be here. She could have given up but she fought. I cannot give up on her," she said.

Therapy and Support Groups

According to occupational and behaviour therapist Lisa McDaniel, early intervention is essential for children with special needs. Parents need to be extremely vigilant especially if the child is born premature.

She notes that there are many tools on the Internet and it is important that parents are educated on developmental milestones and check these and remain in constant dialogue with their paediatrician.

"These children can grow up to be very functional so we have to help them to be the best they can be," she advised.

McDaniel also said that it is important for parents of children with special needs to work with a therapist if even for a very short period of time, who can give them pointers on ways to improve their children's motor skills, etc. She noted that time should be allotted each day to work with the children as consistency and repetition are very important for these children.

"I say rejoice in all the improvements that they make."

Support Groups

According to McDaniel, being part of a support group is very important for the parents. There they are able to keep up to date with what is happening and share ideas on what works.