A mother’s quest to make autistic son independent

Esther Mwendwa during an interview. [Elvis Ogina, Standard]

Esther Mwende was a mother in turmoil. How could she ensure that her son, rapidly getting into adulthood, would somehow lead a full life despite the challenges the disorder posed? Enter sensory rooms.  

We learned that my son Dennis Mwendwa was autistic when he was just 18-months-old.  We had noted that he wasn’t hitting his milestones and that prompted us to visit a paediatrician who confirmed that indeed Dennis had a developmental challenge.

He explained to us that normal function that babies would otherwise pick up such as walking and sitting would be delayed as our son was autistic. Indeed, it took him close to two years to just sit. To get him to walk, we enrolled him through several physio therapies that cost us an arm and a leg.

When he reached school-going age, we decided to keep him home as he would unconsciously struggle interacting with his peers. Nevertheless, we did our best to offer him a semblance of a  a real childhood experience. I had to juggle my work and taking care of Dennis. There were instances I had to take him to work with me because I felt that only I and his father could understand him. The house helps had no patience with him.

The situation with house helps is what got me thinking that as he grew up, he would also face the same from the society. They wouldn’t understand his limitations as a person living with autism. I had to find a way to equip him with some social skills. But how?  I racked my brains day and night, and after some research, I learnt that in developed countries, most buildings had special rooms where special children (mostly those suffering from autism) could while the time away as their parents did their chores or performed other activities. They called them sensory rooms. The rooms had  fibre optics and lights, UV light panels, aquatic bubble tubes, trampolines, floor cushions, colour match panels, all of which were supervised by adults but ultimately controlled by children. And the special lighting, sounds and even specially designed toys were fashioned to appeal to autistic children. The science behind it was that through inspiring and activating their senses, they learnt to respond socially and to external stimuli.

This discovery intrigued me. This was especially after one episode with Dennis after he turned 15. One day when we were out and about, Dennis saw a bouncing castle. It was the very first time he had seen one. And it got him curious. He jumped onto it and the other kids, probably a little astonished, started stomping all over him as they played. But nevertheless, my boy seemed so happy. He was having the time of his life.  I wanted him to lead a normal full life, and at that point, even going to church with him had become almost impossible as he was always restless and disrupting the service.  

  I realised then that if there was any way I could find make him fit into the society better, I would do my best. And maybe the sensory rooms would be a good start. Since I could not incorporate the room in my house thanks to the technical aspects involved,  I talked to my local church, the International Christian Church, hoping they would to assist in coming up with this meaningful project that would help so many families. Fortunately, they were sold, and the mission started. The first sensory room was completed earlier this year in the Imara church’s campus. As soon as it was done,I made sure Dennis spent as much time there as he possibly could.

Dennis is 19 now, and I am a proud mum. In the few months he has used the room, he has become a sociable young man. Dennis can now be considered conscious enough to comply appropriately with his social environment with minimum assistance. He even goes to school now, and has friends. I didn’t think this was possible. Even in my wildest dreams.  He interacts well with his peers and unless you put him under intense scrutiny, you can barely tell he is autistic. He is capable of assessing his environment and making sound decisions. This means he can compose himself in social scenes, and that means the world to me.

The sensory rooms are something any parent of an autistic child could use. And the church one is accessible to all children at no cost. I wish many other organisations can pick this up and make them available everywhere. I am a happy mother now that I don’t have to worry about Dennis every second of every day.

Why create a sensoryroom or space?

Individuals with autism, ADHD, cerebral palsy and Down syndrome often struggle to cope with the world around them. Loud noises, bright lights, rough patterns or foods with unwelcome textures are just some of the things that can cause distress. Because their condition can magnify seemingly small sensory encounters, they are prone to meltdowns, tantrums or negative attempts at self-soothing.

How does a sensory room help? It can provide a place for an individual with special needs to go when a meltdown occurs. But, it’s not just a place for a time-out. While it can be a calm space where they can regain control of their emotions, a sensory room can also provide a low-stress, fun environment for an individual to work through their emotions and reactions to certain stimuli.

While they can’t necessarily take away their brain’s sensitivity to certain stimuli, they can train their brain to overcome its sensitivity and develop coping mechanisms that will serve them well in the world beyond their sensory space.