Desiring a better world for my children

DR RADICA MAHASE

In commemoration of International Women’s Day 2022, I am happy to highlight one very proud autism mom, Rebecca Fortune. She has been working quietly in the background, supporting other autism parents, doing her part to make Trinidad and Tobago inclusive for those with special needs/disabilities.

Her daughter Alexia is nine years old and her son Alex is seven. Fortune staid, “Alex was diagnosed as on the autism spectrum when he was two years old. He was experiencing speech delays. In fact, after a decent vocabulary, his words shrunk over some time. He made very little eye contact but we caught the signs early and we got him the support he needed.

“My initial reaction was fear. We all know how unkind and cruel the world can be. I have fears for my neurotypical daughter, much less Alex. But amidst this fear was relief – I liked knowing so (he) could get the tools needed. I do not do well with uncertainty, so that subconscious wonder as to what I was missing was very distressing. However, although I felt relief, I was over overwhelmed – I felt like there is so much to do, so much to learn. I felt inundated, I had to think about therapies, vetting therapists, finding tools for his support, possible schools and programmes.

“I am a mother amongst other things, but being an autism mother is my most fulfilling and challenging role to date – challenging in a good way as I have grown because of it. My son Alex is incredible – very playful, loving and intelligent. He loves machines and is fascinated with A/C units and lights. He loves his sister and she is so incredible with him.

"I get that the world works by labels but sometimes I feel it is a sign of ignorance. It is convenient to label people and put them in boxes so we can assume we know what they feel, think and what they believe. Sometimes it works and sometimes it just does not. When we place people in boxes (we) miss out on so many perspectives and experiences.”

As a working mother, her journey has not always been easy. Fortune said, “To say I had it easy would really diminish the journey thus far, but in comparison to some of the issues other special-needs parents undergo, I have been really blessed. My struggle comes from my fear for what the world will throw at him. I am not sure what type of society Alex will meet as a man. I just focus on pouring into him goodness and support. I also try to educate myself; having a kid on the spectrum in no way gives me all the answers and experiences, but I try to keep up. I am no more exhausted than the average mother or parent and I feel blessed.

“Trials have always been therapies; the cost, logistics. Generally, Alex’s dad and I manage to get him the therapy he needs but I think of all the other parents who cannot afford therapies and how many kids are missing out. Another challenge is to balance work and being a mother. I rely on his dad and grandfather to drop/pick up; we crammed a lot into weekends; took time off from work, just to get him the help he needed. I worked for a company that was really compassionate and supportive and I have transitioned into another organisation where my manager supports me. Alex is in primary school and he hates online school but I feel blessed that he has had such excellent teachers thus far. It really does take a village and Alex is blessed to have an incredible village.

"Raising a child with autism – sometimes I am winging it. I am just trying to do as little damage as possible. I can be his advocate, but as he grows, he will have to learn to advocate for himself as well. I am continuously learning and reading to be able to be responsive to his needs. To other parents, I have to say, I know it is tough (some have it tougher than others), I know you are tired, but it is really the process of waking up every day and moving forward, sometimes it feels like we are not doing enough and we have failed in some way but that’s just self-doubt.

"Find a community of people who will understand and allow you to break down and will build you back up; give you and your kid(s) support; share tips and experiences; help you navigate bureaucracy if you need to access social services. Time is longer than twine. We have to put in the work now to ensure a better future for our kids.”

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