My Heart, My Life & Autism
Updated: Apr 11, 2020
By Dr. Jane Muiruri
If you are a perfectionist and clean freak, you are not welcome into this home. If you cannot follow directions with precision, I suggest we sit outside and just have that cup of tea. If you cannot look at someone who is different from you without pointing and staring for more than a second, please don’t come around here. In fact, there are several other things that will make you persona non-grata around here but the greatest of them is the lack of concern and compassion. You see, I live in a special space and I don’t apologise because this is my life and I have made peace with it.
My name is Jane, I am married to George aka Dee and we have three beautiful daughters Alexia, Ava and Austen, who are literally the centre of my life. Many mothers say their lives revolve around their children but you have nothing on me and other mothers like me. You see, I have two beautiful autistic girls age seven and five years so my life is on the go 24/7.
My life wasn’t always like this. I was looking forward to a simple life with children and work as a health management professional but that all changed with the birth of Ava. She was a beautiful baby simple and sweet only that she was a little behind in her milestones. Everyone around me said she would catch up but something in my heart said it wasn’t so, there was more to it and I began reading and researching.
There is something in a mother’s heart that knows her children no matter how little.
I laid my fears aside until after we had Austen and I just couldn’t sit back and do nothing anymore. It took many doctors’ visits and trips across Nairobi looking for answers before we ended up a psychiatric clinic at Kenyatta National Hospital. Yes, I said psychiatric clinic. The stigma associated with taking my baby to a psychiatrist almost stopped me but I was out of options. This was my last hope and I needed every little bit I could get.
It all came crashing down when the doctor first confirmed my suspicion that she was autistic. On one hand I was ecstatic we now knew what was going on but my mind was reeling with the information. What would we do? How would life change? What lay ahead? On and on…as I battled to recollect myself and get out she snapped her fingers and I raised my head. Her next words startled, when she said ‘We needed to talk about the baby.’ It took a long moment to collect my thoughts and I sat up straighter as she looked pointedly at Austen. Here was my little one, calm and peaceful and she too was autistic. What was I going to do?
Let me lift the curtain for you a little bit.
Autism is a spectrum so no child is the same. Every autistic person has different triggers, challenges, stressors, diet and the list goes on. Their minds receive stimulation at heightened levels but cannot process these signals well. They do not understand danger, moderation, fear, or strength. When exposed to stressful situations or have their routines disrupted they often become volatile and it takes time to get them calm again.
So imagine me walking in the streets of Nairobi on the way to a doctor’s appointment with Ava and Austen. They are wearing headphones that look really cool but they are dampers to minimise sensory exposure. A young man runs by and grabs them off her head and it all breaks loose. Her brain is now overstimulated and she goes into meltdown because she cannot process the situation. I grab both of them and duck into the closest building which is a bank. It takes me more than half an hour to soothe Austen and I am just thankful that day I wasn’t alone or it would have been impossible. Now we can’t get back into that public let alone continue to the doctor’s office so I call a cab and we head back home with Austen’s ears stuffed with tissue.
I must admit that it isn’t always bad because they have the most beautiful hearts, they are genuine, they are real and they mean what they say. They do not judge you unless they associate you with negative emotions based on how you dealt with them at the onset. I watch my daughters and smile as they get increasingly independent even as I know that they are my responsibility for the rest of their lives. I can’t stop the love that wells up in my heart.
Late at night as I clean the house, fold clothes, iron, wash dishes or whatever else needs doing after they have slept and before they wake up at 3am, I recap my day over a cup of black tea with black pepper. I treasure these moments I have with the girls. I treasure every picture painted, word spoken, and hug given. I treasure the fact that I can sit down and work to keep my family fed. I treasure the people God has sent my way to help me keep going.
My life like most autism care givers is on day and night all year round because we need to keep the wheels going no matter what and keep them safe. We need to earn a living as well as care for our children so don’t have the option of letting go. Yet in those moments I wish there were better support structures for us as parents of children with autism, but that is a discussion for another day.
As we commemorate the Autism month, I ask that as you look around and see us, take a moment to pray for us, come over and say hi and just be kind because we need your support now more than ever.