Autism super mothers

DR RADICA MAHASE

SHARLENE is a 28-year-old, single mother of Liam. At age three Liam was diagnosed with autism and Sharlene has been struggling to cater to his needs.

She lives with her grandmother who helps as much as possible – grandma drops/picks him up from school and keeps him with her while Sharlene is at work. During the day she works at a clothing store and four nights per week she works in a casino. She gets no financial assistance from Liam’s dad or social welfare and every cent she earns goes towards taking care of Liam.

Sharlene said, “I don’t have any financial support from anyone but as long as I am healthy and strong and can work, I will work and provide for my child. Sometimes it’s really hard and I can’t give him a lot of things that I want to, but I provide for him as best as I can. When I look at him, he gives me the strength to go out there and work, even on the days when I feel like giving up. His love for me keeps me going.” Sharlene struggles on a daily basis but she doesn’t complain, she simple works hard and provides for her child and hope for better days.

Sharlene said, “When Liam was just a baby and I wasn’t working everybody kept telling me to give him away. There was a very rich family who wanted him and I know they would take good care of him. But he is my baby, how can I give away my baby? Then when Liam was diagnosed with autism, I was told that he will need a lot of extra care and therapy and all that. My uncle told me that children like him will never be able to have a normal life and I should give him away, maybe to a home or something. But how can I live knowing that I gave away my child and he’s in a home somewhere? It doesn’t matter if he has autism or anything else they tell me, he is my son and I love him and I will do everything to take care of him.

Sharlene is not the only mother to a child with special needs who struggles on a daily basis. Even those mothers who are from upper economic group and who can provide for their children financially, struggle on a daily basis. They struggle with the emotional aspect of raising a child with special needs, family criticisms, etc.

Maria, a manager in a top company and the mother of a six-year-old girl with autism said, “My husband and I have good jobs. We are financially secure. We take Elena for various therapies, she’s attending a really good private school and we travel twice a year. But I just feel like I failed my child. I always think that I am the reason why she was born with special needs, that maybe I did not do something that I was supposed to do, didn’t take good enough care of her when she was in my belly. I blame myself for her having autism. And everybody blamed me too. Even now the extended family thinks that it’s my fault.”

Generally, being a good mother is difficult but being a mother to a child with special needs poses a whole set of different challenges. We tend to overlook the emotional needs of special needs mothers, especially those who are with their children all day, every day. Many are exhausted, they have no time for self-care and they struggle to cope emotionally and physically.

That is why it is very important that we have a proper support system in place within the healthcare system. This should start even before a baby is born – sessions where mothers are educated about the child’s development and emotional preparation for having a baby. If a child is diagnosed with any kind of special needs, then mothers (and father) should have access to counselling services to help them understand the diagnosis.

We also need health care professionals who are approachable, accommodating and knowledgable; parent training sessions, etc. These should be equally available to every mother (and father), regardless of economic background and geographic locations. No matter how much of a super mom Charlene and Maria are, they still need support! Happy Mother’s Day to all the special needs super moms!

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