ORDINARY TONGAN LIVES - Holonga, Tongatapu

Story collated and written by Haitelenisia Afemui ‘Uhila Angilau for her 'Ordinary Tongan Lives' facebook page

“We have four children—two of them are autistic. When Viliami was 2, he still couldn’t say a word. I took him for checkups but everything was just normal. He did like to suck his thumb though. To stop it, we put chili on his thumb. Once he stopped thumb-sucking, he started making certain noises. And he began to be very clumsy. He was healthy and strong but he just never spoke.

At about 5 or 6 years old, that’s when I knew he’s just never going to speak. But that didn’t stop us from taking him to school. We took him to Ella’s Kindergarten then to the government’s school at Ngele’ia. It was through the teachers that we learned Viliami was autistic. Once I knew, I turned to the internet to learn as much as I can about autism. I learned so much from parents who were raising autistic kids and it helped a lot to bridge the communication breakdown we had.

It was a constant struggle to simply understand each other. I didn’t know the things I did that frustrated him but I learned from other parents.  When Kesa came along after Viliami, I already knew there was something wrong. Both her hands lack a finger or two. There was also an operation done on her left foot. Without that, she wasn’t going to walk. It weighed on my mind so much that I vowed I’ll never have anymore children. I began to wonder what was happening to my children. And honestly, there have been many times when I’ve asked myself, ‘Where did I go wrong? Have I made certain
mistakes in life to bring this upon myself and my family? Was this a punishment of some sort?’

Remember as Tongans, we’re prone to think like that because it’s something we hear all the time. But as we worked with my husband to raise our children all these years, we find that this is a great blessing. It has changed me in a lot of ways. Before I had these special ones, I never really noticed people who were disabled, or those with mental illnesses, or any other special conditions. Now that I have autistic kids, I have a heart for all of them. You notice each special one you see on the side of the road and you love them instantly. Because in your mind you think, this could be my children.”

“As parents, we had to find the courage to raise them and love all our children the same.  These special ones would notice if they’re treated differently. It hasn’t been all easy for our  family but it gets better. When Kesa came along, I knew what to do because of Viliami. That’s probably why Kesa is doing so much better. She can communicate and is very smart and  sociable. Just one glance at me unlocking my phone and she knew the pattern to unlock it.  She’d unlock the phone, download all her favorite songs as she enjoys singing, or watching movies. When our TV screen fails to display anything, Kesa fixes it. She loves school but this is her last year. Viliami is beyond 13 so he’s not in school. He preferred to be left alone but he  does love ropes or anything that resembles one. He also loves fried food. If I buy him  takeaway, he’ll eat on his own. But if I cook at home, he refuses to eat unless I feed him.

When he was about 12, one time he just collapsed. It was in the middle of the night when everyone was sleeping. Luckily, he fell on a foam mattress in the living room. All of a sudden, he started having seizures. I panicked. Then I remembered Simaima, from our neighborhood. She had such seizures when I was young and people would yell to keep her mouth open. So I ran and  got a spoon and put it in Viliami’s mouth. That’s all I knew and we struggled long until the  seizures stopped. He had seizures up to 3 times a week. Because he was active, we had to hawk him daily. He could collapse anywhere, anytime and it worried me so much. We were told from the hospital it’s something to be expected given his condition.

After struggling with that for quite a while, there was really nothing else better than to bow down and pray.  We used to pray and attend Church but we stopped. My mind was taken to praying as the only remedy. I think it’s why Viliami hasn’t had a seizure for over a year. I did have another kid 6 years after Kesa. Now I have one boy to care for Viliami and one girl to care for Kesa. I keep  telling them one day in the future, they’ll have to care for these two. No one else can  understand or love their siblings better than them.” - Holonga, Tongatapu, Tonga