DR RADICA MAHASE
JOSHUA and Talia are parents to 11-year-old Hannah and seven-year-old Leah. Hannah was born with a rare liver disease called biliary atresia and needed a liver transplant to save her life. When Hannah was one-year-old, Joshua donated one fifth of his liver to her at the Johns Hopkins Hospital in Baltimore, Maryland. Due to complications because of strong antibiotics used at such a young age, she became profoundly deaf post transplant.
Challenges of speech disorders and getting her implanted with coclear implants were some of the hurdles the family faced later on. The financial strain has remained over the years as the family had to repay loans that they taken for the surgeries and after care. To make things worse, Joshua lost his job when Petrotrin closed down.
Obika is a single father to Precious who is eight year old. Precious was diagnosed with autism at age three. She is low functioning on the spectrum and needs constant care. Her mother could not deal with the stress of raising a special needs child and she left Precious and her dad when Precious was five years old. For the past three years it has been a struggle for Obika. He lost his job so he opened his own garage, he hired someone to stay with Precious and he constantly checks in with her during the day. His life revolves around his work and his daughter.
Joshua and Obika are just two of the many fathers of children with special needs whose lives revolve around their children. They are just two of the super dads who do everything they can to provide for their children on a daily basis. Obika said, “I don’t see it as I have a choice. It is my child and I have to provide for my child. If I don’t who else will do it? If you have a child it is your responsibility to take care of their child regardless of your situation. And I am so tired of people acting like it is only fathers who desert their children. When Precious mother left us, someone told me how she was so surprised; she thought I would have been the one to leave.”
Sometimes it’s more difficult for a father to deal with a special needs diagnosis and with raising a child with special needs. Although we live in the 21st century we still have 19th century mentality where fathers are expected to be strong and everyone depend on them to handle the situation, make the decisions, provide for the family, etc. As a society we still believe that men who show emotions are weak men. This entire stigma and perceptions can be even worse for those fathers of special needs children who struggle on a daily basis to provide for all the extra therapies, medical care, private special needs school, etc.
Special needs fathers are called up to make extra sacrifices, they have more restrictions on their lives and often they have no one to turn to for support. Sometimes the tasks become too much for them and they crack under pressure. In fact, we cannot assume that they are handling everything well, especially if they do not talk about it. A study done on special needs fathers in New Zealand, called Perilous Passage shows that when fathers received a special needs diagnosis for their children they almost immediately begin to worry about their child’s long-term future. It also shows that fathers consumed more alcohol, more frequently as a way of dealing with their emotional trauma.
In TT we need to have effective support systems in place to help fathers in general and special needs father specifically. In many situations fathers needs counselling but because of the financial strains of raising a child with special needs, they cannot afford this. Counselling should be made available and easily accessible through the public health care system. Also, we need support groups for special needs fathers so they will have opportunities to interact, discuss their situations and support each other.
As Joshua said, “Having a child with special need is indeed a challenge but a special joy when you see their determination to survive. The best that we can give them is our unending love and support. My advice to other fathers is to cherish the gift of your children and spend quality time with them for it is the best gift a child will ever want.”
Dr Radica Mahase founder/director, Support Autism T&T