The pain of raising an autistic child is indescribable and I know this all too well. When I met and fell in love with the father of my only child, the relationship was set for a marriage and a happy family or that’s what I thought. But it was never to be when I discovered that the father of my child was married and yet I was already pregnant. The fate of my child Drusilla Ainembabazi, who is now 13 years old, was sealed much earlier in the womb. When I was six months pregnant, I was involved in a "boda-boda" accident, after which I bled for two weeks. Fortunately, I survived the bleeding but gave birth to the baby prematurely.
When my bundle of joy was born,I had a lot of hope and so many dreams for my baby. However, the castle of any expectations started to crumble when my child failed to achieve the developmental milestones. My baby could not maintain eye contact or concentrate. She would tip-toe, cover her ears and examine food by smelling. This forced me to seek medical help for my daughter after thinking she had a tongue tie and would not speak. As a mother, I was so desperate and had done everything I though would help, including changing to different religion, spending nights at prayer mountains, traditional healers all to no avail. It was much later that I decided to go to Mulago Hospital.
At the hospital, I was referred to ward A1, the Speech and Language therapy ward. It was there there that I was referred for a CT scan of the brain at Imaging Centre where series of tests were carried out. The tests showed my daughter had a developmental problem which had resulted in Autism according to Doctor Janet Martha Akullo, a Psychiatric clinical officer with specialized training in child and adolescent mental health. It’s a diagnosis made at 3 years when a child persistently exhibits difficulty in core areas of communication ( both verbal and non verbal), behavior and social interaction. Worst of all,I was told there is no cure for Autism. In the subsequent weeks,I lived in denial about my daughter’s diagnosis. I later gathered courage and went online to learn more about the condition (Autism).
Not everyone else came to terms with the diagnosis, opening the door for stigma for me and my daughter. First, it was my daughter’s father who disowned her because of her condition. (In his statement, he said they don’t give birth to such children in their family). Secondly, there was no solace at my work place with close friends and workmates including my managers. I remember a time at work when one of my immediate managers insulted me. He ostracized me for having a disabled kid which was none of his business. The insult came after I had made a small mistake which could be easily solved. I would cry everyday whenever I remembered all these things. I decided to file a law suit with Labor Uganda against him for the insult, unfortunately nothing was done.
The new vision came in to interview us and my story was published. Everyone was concerned including my cousin who is working with autistic kids in the UK. He was more bitter than I was. He posted my story on social media and somehow it got back to the people at my work place. I felt dehumanized and had to quit the job. I requested for two weeks of annual leave and when it was almost time to go back to work, one of the General manager gave me the condition to never talk about my child again if I was to return. I battled with humiliation and hurt. Being part of the front desk staff, it was difficult to act like my daughter did not exist just to protect my job (my job included a lot of talking, when asked by a client if I have kids, I couldn’t say no. My children are my life and they are the reason to why I even went to work). The abuse was not only restricted to me but also to my daughter.
My daughter now goes to Dorna Centre Home for Autism; the Director Miss Dorothy Nambi and the school have done a lot and are still working hard on improving her social communication, social interaction and empowering her with vocational skills that are aimed at preparing her for an independent life in future. Drusilla has improved a lot, she has started saying some words out loud, she can sing almost all the advert songs on television as part of gaining her speech. She eats most of the food and is not selective like before,she can do some house chores like washing dishes, doing laundry, showers herself. She concentrates and is not jumpy, she goes to toilet herself, she sleeps in the night...all this is the effort of Dorna centre Home for Autism. As a mother who has been through it all with her, this progress gives me hope of a good future for her.
Loving, accepting and understanding Drusilla...its the only medication. These children are Flowers, they are blessings and innocent Gifts from God. Let us treat them that way.
About the author: Antonnate Amooti is a single mum and a Hotelier by profession. She has been in the Hotel business for over a decade, and is resuming work after two years off. She loves sharing and making new friends. She is also a volunteer at Dorna Centre Home for Autism where she does marketing, operations and raises awareness as an advocate for autism.