How do you tell a younger child about her sibling's autism?

It has been a long hiatus. I’m even ashamed to start explaining or finding excuses. Life was happening, as it sometimes does. My life has been congested with both the good and the bad, but my blog is always on my mind. I feel like a bad mom that has neglected her child, but all is well that ends well. I’m back! I have so many issues floating around in my head and will do my utmost best to transfer them from the head to here. I just need to create time to do that. I think my major problem is that I overthink things, to a point where I overthink them to death, literally. They eventually just disappear off the radar because I’m not putting them down on paper or on laptop rather. Some of the things are those that need some research to be done so that I’m more confident about them. But the issue I’m writing about today is a no-brainer to me. It doesn’t need research because I live it every day. It’s called autism. Even if I have lived with this condition under my roof for the past 12 years, going on 13, I’ll never be an expert because new challenges keep presenting themselves. I’ll never have things figured out at any point.

My regular readers would have read about other posts I have written about autism and how it affects my life. In some of them I was rational, and in others I was just lashing out, depending on my frame of mind at those times. If you haven’t read them before, please find them below:

 Know the autism red flags

A mom shares her autism story

Autism: A mother's tale

Autism Awareness 

 

Be Autism Aware in 2017 

 

Happy 10th Birthday Victor!!

 

Happy Birthday Victor!!

 

 

 

I also have a separate blog where I write about disability issues. Most of them were published in The Observer on Sunday sometime back when I used to write a column for them, and some of them will have copies on this blog. Do visit it. It might open your eyes some to the issues that parents whose children have special needs go through daily – their challenges, fears, and small triumphs. Today I had an issue that moved me, or pierced my heart.

Broken Heart Emoji

There was a newspaper with the broken heart emoji. My 4-year-old, who is fairly mature for her age, pointed at it and said, “It’s a broken heart. It means no-one loves him.” I have no idea why she thought the broken heart belonged to a man. I took the opportunity to talk to her about love and asked who she loved. She said she loved her friends Seka, Khanyi, and Summer. Then I asked if she knew anyone who loved her, and she said Khanyi and Seka loved her. Her dad said, “Mummy, Daddy, and Victor love you too.” She said, “No. Not Victor. He’s always running away from me.” He does move away from her a lot when she tries to play with him or sit too close to him.

Victor has autism and sometimes dislikes physical contact, unless if it’s initiated by him. Just yesterday we went to Spur for lunch and he didn’t want to sit next to me. He ended up sitting at the very corner of the seat with one bum to be as far away from me as possible. We went to the movies recently to watch Johnnie English Strikes Again on his request and, as is the norm, were allocated seats. Upon getting to our seats, he didn’t want to sit next to any of us, so he skipped one seat and took the next one. He just didn’t get that it belonged to someone else, regardless of how much I tried to explain. Then this boy came and said, “That’s my seat,” and Victor said, “No!” He was determined not to budge until I told him security would throw him out.

Getting back to today’s situation, or Rudairo’s interpretation of Victor’s poor social skills, I had no idea that was how she felt about it. There have been moments when I’ve seen her cry because her brother was running away from her or refused to join her in a game she wanted to play. My reaction has always been, “Leave him alone. You can’t force people to play with you if they don’t want to!” I realised today that that might not have been the best way to handle the issue. We need to have a proper conversation with Rudairo and explain to her that her brother is different. I have no clue why, but I’m crying now 😭. How do you even start explaining autism to a 4-year-old sibling of a child with autism? Where do you start? It’s not any easier explaining it to adults that think your child is a spoilt brat when he has a meltdown, or that he is dumb because he fails to understand what should be very simple concepts like being aware of dangerous situation such as crossing the road with caution, or understand that the order of things can be changed. There is not much, if any, support for the autism community in Swaziland, and I know there are other families struggling with issues that a little support would have assisted with. Today the father tried, dismally, to explain to Rudairo that Victor does not run away because he doesn’t love her. I say dismally because I doubt that Rudairo is any wiser (just like the rest of us) about the reasons why big brother doesn’t want to have his space invaded. Here is how the conversation went:

            Dad: Victor doesn’t run away because he doesn’t love you. He loves you.

            Rudairo: So why does he run away?

            Dad: He runs away because that’s how God made him?

            Rudairo: Did God make Victor run away?

            Dad: (No answer)

I then swooped in like Mother Hen and said, “Victor, do you hear what your sister is saying? She says you run away from her because you don’t love her,” whereupon Victor said, “Yes!” with a giggle. I asked Rudairo to go and hug her brother, and told Victor to tell his sister he loved her, and he did. She said, “I love you too!” Cute, huh? But he will run away from her again tomorrow. And we will still not know how to explain that to his 4-year-old sibling.