Autism family support system (or lack of)

DR RADICA MAHASE

“I would never be able to take care of my child if I didn’t have the help of my extended family. So many times I depend on my parents to help me with my son; to drop and pick him up from school when I am not feeling well or when something happens. It is very challenging raising a child with autism and I feel mentally drained. Every so often, I need my parents to step in so my husband and I can get a break. I know how fortunate we are, that we both have parents who help out all the time. It makes a big difference in the quality of life that we live.”

Nadia’s situation is one of the happier ones. Her nine-year-old son has two sets of grandparents who have taken a proactive role in his life. He is surrounded by family members who makes sure that he has access to therapies and education and who are actively engaged in his general development. Unfortunately, this situation is not always the norm in TT.

According to Sadie, “I raise my child on my own. She is now 12 years old and her father left when she was about four; her father said that he didn’t plan on having a child like that and he ain’t cut out for that, so he left. Since then it has been me and my daughter alone and it has been very difficult. I work in a supermarket during the day and I pay someone to stay with her while I am at work. Because I have to pay for rent and childcare I can’t afford to send her for any therapy. But she is safe and I do my best to make sure she is healthy and happy. I worry about what will happen to her if something happens to me. But for now, it’s just us alone, this is our little family.”

According to Tony, “My son and I have been alone for the past eight years. His mother stuck around until he was about six years old. She used to be real frustrated taking care of him; it’s wasn’t easy especially as he used to get meltdowns all the time. She didn’t have the patience to deal with him and she would cuss and carry on all the time so I was kinda happy when she left. Now we have some peace. Thankfully, my mother is around and she takes care of him during the day. I work in construction and sometimes when I don’t have work or when I am working nearby I can spend more time with him.”

For many children with autism and other special needs, family support, especially from the extended family, is crucial in their everyday care. Historically, TT has had a strong extended family network, with grandparents, aunts, etc, playing an active role in helping to raise children on the whole. ‘It takes a village to raise a child’ was a reality. For parents of children with autism, especially single parents, the support of the extended family support is needed because of the lack of support at a national level.

For example, when a child with autism doesn’t have the opportunity to attend an educational institution because public school system does not cater to their needs; when an individual cannot access therapies because it is not available in the public healthcare system, when the social welfare system is irregular and difficult to access, the extended family is the one that provides for and takes care of the child.

Nadia is not the only mother of a child with special needs who is grateful for the support of her extended family. Tony is not the only father of a child with autism who relies heavily on his mother to help him take care of his child. Sadie is not the only mother who worries about her child’s future. The support of the family is crucial in raising a special needs child in TT because it helps to cushion the lack of government support for those with special needs.

Last Friday, TT celebrated the International Day of Families. There are many issues relating to special needs families that we in TT have to acknowledge and address so that individuals with special needs can have the opportunity to lead fulfilling lives. Kudos to all family members who take a proactive role in raising an individual with autism/special needs.

Dr Radica Mahase is the founder/director, Support Autism T&T