Happy 10th Birthday Victor!!

THIS month on the 12^th, my son Victor turned 10.  What a ride it has been! As I mentioned in this post last year, his birthdays are always very emotional for me. A dark cloud engulfs me as I keep wondering if there is something I could have done to stop the autism. I vomited a lot during his pregnancy and my gynaecologist prescribed medication to stop the vomiting fearing I would miscarry. I can’t help wondering if the meds are what caused the autism. I also had a difficult delivery. At 40 weeks, there were no signs of labour whatsoever. The doctor decided I would have to be induced, which was done on the night of January 11^th, I was induced. Whatever was used had no effect at all. I only vomited but there was no progress with regards to labour. They upped the dosage, and in due course, the pain set in. I only vaguely remember the pain, everything is all blur. Eventually, after 12 hours of labour and no progress, Victor was delivered via emergency C section.The fact that I don’t remember much torments me. I wonder if something went wrong during the labour to cause the autism, or if the prolonged labour caused it, or if the gynaecologist was negligent in some way… endless and countless scenarios playing in my head. Anyway, it is what it is. No amount of thinking will take away the autism.  I know I should channel my energy towards things that count, like helping him with his social skills and school work. I believe I have really tried, though I don’t feel I have done my utmost best. There is a lot that still needs to be done. He can now read simple books, a feat I never thought he would achieve any time soon. Every time I heard him read, my heart falls short of leaping through my heart for joy. It swells with pride and gratitude to the One above. And he understands what he reads. I always follow up with questions to assess comprehension and see that he’s on top of itJ.

In Swaziland we don’t really know many people. We live a reclusive life: no one visits us, and we don’t visit anyone. I kind of like it that way, although I miss having a social life too. Being around people and especially neuro-typical kids can be very harrowing. That’s when we really get to see how different he is from the rest – from the way he talks, plays and relates to the world around him. You listen to other 10-year-olds speak and you are so bamboozled and think, “What? Is this what 10-year-olds talk about? Is that how they think?!” It’s as if you don’t have your own 10-year-old at home. It can get very heartbreaking. You see someone with younger kids just tell them to go and change and they come back ready to go, and you have to assist a much older boy with everything. When you’re alone in your little corner, with no basis for comparison, it doesn’t bother you at all. It’s your daily life and you’ve gotten used to it. But when you see that that’s not how everybody lives and your life is way harder than most, you do shed a tear or two. People say don’t compare your child with others, but that’s easier said than done. You see things, hear things, and think things, and you can’t help wishing… It’s inevitable.  

There are also some hallelujah moments when I see that what happened to my son is not the absolute worst thing to happen to a child. He is intellectually slower than most of his peers and his motor skills are poorer, but he is not incapable of learning. He is quite in touch with the world around him in his own way, he can go to the loo by himself and can tell me when he is not feeling well and where it hurts. Other autistic children cannot do all that. I have mothers in my circle who are having a really tough time with the debilitation that comes with autism, a tougher time than mine, I have to admit. While I struggle with my hyper-verbal son, they yearn to hear their children say, “mom” for the first time, and some of these children are in their teens. Research has indicated that about 40% of people with autism will not be able to speak. So I am aware that I have to be grateful, it could have been worse. But I will not stop wanting more for my son.

The comparisons are the least of my worries when I travel with Victor, as I recently did during the festive season. Some people have the worst attitude towards autism. More often than not, it is those closest to you that say the most atrocious things that make you say, “Jeez, why on earth did I even visit?” Unfortunately my relationship with such people makes it difficult to tell them off the way I would want to. I, however, say things in my heart that would make them zip their mouths if they could see what’s in it. There are also good, sensitive people who, when they see the negative behaviour that sometimes accompanies autism, simply reprimand Victor as they would their own kids, or ask me how to deal with him. I feel at ease with such people.  Others just don’t say a thing, even though I know they are probably saying a lot in their hearts, or just enduring some quiet bewilderment. I also respect them, although I feel asking questions so that you can have a better understanding of the situation could be a better option. I know they do have questions. I’m happy to address them. What I can’t handle is people running their mouths commenting on him and how I should feel and all sorts of nasty things.

The purpose of this post is not to rant and rave, but to shine the light on autism, and how misunderstood the condition is. It is also to let my son know (since he can read now, WHOOP WHOOP!!) that he will never be alone as long as I’m here, and to other parents walking the same path, a luta continua! No retreat no surrender!