Thursday, December 14, 2017

A labour of love

Mom’s struggles caring for autistic child...


DEVOTED MOTHER WITH HER SON: Helen Ramcharan hugs her autistic son Stephan, 22, at the launch of Autism Month, at Autism Place, D’Abadie. –Photo: Stephen Doobay

Mark Fraser

Aranjuez mother Helen Ramcharan has made a silent vow she will always care for her autistic son Stephan, 22, who has the mentality of a one-year-old. 

She was among those who had gathered to commemmorate the launch of Autism Month at Autism Place, D’Abadie, on April 2. She was joined by then-acting Prime Minister Errol McLeod, the Minister of Labour,  Small Business and Micro Enterprises;  president of the Autistic Society of Trinidad and Tobago Teresina Sieunarine; the guest speaker, autism education specialist from Minnesota, United States of America,  Kari Dunn Buron, and Debra Carrington, Republic Bank branch sales manager, Arima. 

Autism is the most common condition in a group of developmental disorders known as the autism spectrum. It is characterised by impaired social interaction, problems with verbal and non-verbal communication and unusual, repetitive or severly limited activities and interests. 

Ramcharan said taking care of Stephan is a labour of love. She also said, at times, she, too, feels stressed out and needs some time out. But she will never abandon him. Ramcharan said, despite the strides made in autism awareness, people are still insensitive and ignorant about differently abled children. 

Coupled with taking care of her son, she has to take care of her husband/part time mechanic Quintien and mother her other  children Christine, 27, Tracy, 25, and Leanna, 14.  

Via a telephone interview, Ramcharan said: “Stephan is 22 years old. But he is like a one-year-old. I found out he had autism when he had a seizure as a baby. Since he is autistic, it is hard for him to do anything for himself. He has absolutely no speech. He does not communicate at all. When he is sick, I cannot tell what is wrong with him. When he has a toothache I don’t know. He does be rolling and bawling. I have to figure out what is wrong with him. He does not have much understanding. I do everything. I bathe him. I brush his teeth. I take him to the toilet. When he is in excrutiating pain, he wants to fight with you. I thank God he can walk.” 

Ramcharan added: “He can identify text. Text is these little pictures they use to identify what they want. He does not understand it much. The only text he understands is KFC. He can show KFC in a picture sign.”

Ramcharan said she realised she was saddled with an autistic child so she sought the best help she could get for him including sending him to school at Lady Hochoy School and signing him up for horseback riding. 

She said: “He went to a number of kindergartens. He is epileptic. His body does not produce calcium (hypocalcaemia). He has to be taking calcium supplements. That is what triggered off more seizures. Because of his calcium levels, his teeth were decayed.”

Ramcharan said it costly to take care of him—especially his dental hygiene. 

She said: “I did a cleaning for him and a tooth extraction. And I paid $17,000. It is costly. I have to raise funds to get things done for him. It’s hard because I don’t have this kind of money.  I installed a urinal. When he wants to ‘pee pee’ I go with him. I know when he wants to pee pee, because he squeezes his penis. He goes to the bathroom. I go and pull down his pants. He will pull me by the hand when he wants to go to the bathroom.  I tried to work but I had to give up my job.”

She also paid kudos to Mt Hope Children’s Hospital  for the help given to him. “I  got good results and treatment,” she said.    

Coupled with the exorbitant bills, Ramcharan said sleep is a luxury for both her and her husband. She also commended her spouse for helping out by giving Stephan his medication and being his caregiver when she has errands to run. 

Ramcharan said: “Sleep is a problem. When he was much smaller, sometimes for days I did not sleep. When Stephan is not  sleeping, I am up all three in the morning. It is hard when I can’t sleep. I feel stressed out. And I feel to scream because I feel something going on inside my head. I can’t think straight. Sometimes I need a little time out. But I can’t turn my back no matter how tired I am. It is a labour of love.”

Then Ramcharan has to assist her elderly  mother Molly Charles, who had suffered a stroke. “I take Stephan and I go and I help out. My husband had a heart attack in 2004. I have to be there for my mother,” she said.  

Many times, Ramcharan has to face the calumny of strangers and their horrid comments. Several people don’t hesistate to refer to him as “retarded” instead of “differently abled.” She felt there was much more work to be done for people to gain a deeper understanding of autistic children. 

Ramcharan said: “I went to PriceSmart on Friday. I had to juggle with the groceries. I admit he is very aggressive at times. A man said ‘if you give him two good belt he would behave himself’. I told him he is autistic. He was just ignorant about it. People just don’t understand. At times, Stephan will be jumping and laughing. People will get so offended. This is what parents with autistic children have to encounter when they go out with children. Some people ignore the  fact the child has a disability.” 

Ramcharan added:  “Quintien took him to the beach. He threw water on a man. The man started to curse and get on. Although my husband explained he is not normal and he is autistic, the man kept cursing. Over the years, people have cursed me in the worse manner and told me why I don’t just keep my retarded child home. It is very hard at times when dealing with him. It hurts when people don’t understand.”

On the flip side, she thanked people like Sieunarine and Republic Bank for their intervention in helping autistic children. Ramcharan said: “That is the beautiful thing about Trinidad. There are more people who will care. There are people who will help. They will offer a kind word.” 

Despite the daily struggles, Ramcharan said she was committed to her son till the day she goes to God’s acre. 

Ramcharan said: “As long as God has given me life and breath, I will take care of  him. I will not put him in a home. I will not abandon him. I will not turn my back on my precious child. My heart will be torn. I will not be able to cope knowing he is there and I am here. I can’t leave him. But I do need some time to take this time out to air out my head. I need time out to deal with it. I am only human. I am just a woman.” 

Ramcharan added: “I am a devoted mother. I would not give him up for all the treasures of the world. God has given him to me and I don’t shirk my responsibility. I don’t want anybody to tell me to put him in a home. I love him too much.” 

Ramcharan said they have even developed a special mother-son bond. 

“He knows me. He communicates with me. When I tell him “Step” I am going out for a little, he will hold my hand. He will start to run behind me. He is a darling. He is very loving. He is the king of the house. I love him with my whole heart. And Step loves me.” 

Health Minister Dr Fuad Khan, in a telephone interview, said: “I am hoping to build two Autism Houses for the Autistic Society in both North and South. They have a piece of land in D’Abadie. All my Carnival fetes are done to bring awareness about autism. And we give a small donation to the Autistic Society. The parents are extremely dedicated. And the autistic children are smart. There is an autistic boy in St Mary’s and he is able to solve puzzles faster than the adults.”