Happy Birthday Victor!!

 My son has turned nine today. Finally!After all the hype he’s been creating since the 23^rd November when his baby sister turned 1. Because he was talking about it every day, my excitement about his birthday is palpable. There are no big plans, but I will pull out all the stops to make it memorable. We ordered cake, I will cook up a storm and try to include everything on his wish list, and I got him one of the things he wanted in his present bag. I will buy at a later stage those I couldn’t find on short notice. I’m excited because it means a lot to me to see him grow. We have come a very long way to get here, and I’m grateful to God for not turning his back on us.

Victor was diagnosed with autism in June 2010, after I had shed lakes of tears and visited multitudes of medicalspecialist to find out why he wasn’t talking. Every new year comes with new challenges that sometimes ripmy faith to shreds and make mequestion whether God is really there, watching me struggle and doing nothing about it. There are also breakthroughs that drive me delirious and make me believe there’s light at the end of the tunnel. Because of the mixture of bad and good, I guess I will always blow hot and cold about my son, never sure whether to laugh or cry.

Unlike other moms, I don’t get too excited about the future. I’m petrified of it because I have no idea what it is going to bring my way. Society isn’t very kind to people with special needs and I fear for my son in the big bad world. Whatever cruel deed he suffers because of his condition will be a dagger through my heart. On a day like today, I get very pensive and emotional thinking about all the troubles and joys I have experienced and those I’m yet to experience because I know there are turbulent times ahead, and some joyous moments too.

There is, sadly, very little knowledge about autism, and a lot of generalisations surrounding it where people know about it. Most people think all children with autism rock themselves all the time, can’t make eye contact, live in their own world and line their toys. Victor does none of the above but is autistic without a shadow of a doubt.

At age 2, he had a very unusual vocabulary of about five words. He could say D, what we called his cousin Darren, Mama, svosve (ant), water and light. He had never called me but would point at my pictures and say Mama. Because he was my first child, I had no basis for comparison and might have reacted a bit late. A speech therapist said she suspected autism, An Ear, Nose and Throat specialist said he was definitely not autistic, a dentist said he had a beefy tongue and things would eventually even themselves out as he grew and he would talk. I chose to believe the Ear, Nose, and Throat specialist and the dentist.  A nurse in the neighbourhood said he probably had a tongue-tie, which she checked for but did not find. Other people told me to relax because boys spoke late, but I could not relax. I just felt there was more to the problem than just the speech. His vocabulary was coming slowly as he grew, but most of what he said revolved around cars.

By age 4 he could pick out almost all the car brands, even though he could not read. I remember telling someone that I felt my son was like a CPU that had been hit by a virus. He had a lot of words in his head but it was mostly difficult to make sense of it all. I know it was also difficult for him to make sense of the world and its inhabitants.

Parenting a child with autism will change your life in ways you never imagined.I used to be a right-here-right-now kind of person when it came to getting results, but now my endurance level is inimitable because dealing with some of his behavioural issues and waiting for him to grasp some concepts require that. Sometimes he really pushes my buttons and I just sit there with my game face on, pretending to read or listen to the music when I’m actually grinding my teeth and praying for restraint. I now know when it’s just an autism issue that should be delicately handled or when he’s just being a pest, as most children are sometimes,and needs a more drastic reaction. My reactions to his behavioural issues usually shock other people. Where people think I should just let it slide, I make a big deal of it. Where people think I should hit the roof, I’m very calm and guide Victor through what he should be doing. This is because I can read him like a book and now know how to handle situations, at least most of the times. In my relationships with other people, I have also learned to pick my battles. Victor gives me good practice. I know when to retreat and when to roll in the big guns.Taking care of Victor has taught me never to take anything for granted. What we think is no big deal like a child singing, talking, walking, going to the bathroom, hearing is a big deal.

I have almost become a recluse because visiting people is a very trying experience. Victor’s social skills are improving, but they still need a lot of work. Entertaining at homecan also be a traumatic experience because occasionally, he will immediately hijack the show, interviewing the guests about whatever he thinks is relevant.  No amount of telling him off will help. If anything, it makes him even more fiercely determined to have his way. We’ve had balding men being asked what happened to their hair and whether they used hair clippers to remove it. The ladies are always being asked about their nail polish, where they did their hair and where they left their children. When I was pregnant with his baby sister, I used to let him feel the baby kick. Now every full-figured woman who comes will have her tummy felt and get questioned about the baby in the stomach. Guests usually entertain his questions for a while, but at some point they will have to talk about more serious stuff with the adults. If people decide to ignore him, he will shout to regain the lost attention and so that his voice is not drowned by the people around. Inadvertently we all gradually start to shout to counter his shouting so that we can hear each other, and it all becomes very nerve-wracking for me.

The situation usually escalates because of some people in my circle and the way they act around him. I have ‘friends’ and relatives who treat him like a spectacle, not a child like their own. He’s very perceptive, so he senses it and begins to act up, thereby making my life more difficult. I’m not blind. I also see it and have to bite my tongue to avoid telling the offending guest to leave, never look back and never come to my house again. Then there are the presumptuous types that feel they know everything about his condition, from the things that autistic people like doing and how they should be treated. Some even recommended that I should buy pianos and paints because people with autism like music and art. If these people gave me a chance to put a word in, I’d tell them they didn’t quite know what they were talking about.  In the same way that no two zebras share the same stripe pattern, when you see one autistic person, you’ve only seen one not all. Painting them all with one brush because they have the same condition is nothing short of being blinkered.

The worst kind of people in my circle are the tactless ones that look out for his weaknesses so that they can start singing to my face about how awesome their kids are at the things my son can’t do. People should rejoice in their children’s achievements. I also rejoice with my sisters, friends and relatives when their kids do well, I don’t begrudge them at all. I, however, feel it’s extremely uncouth for one to blatantly draw comparisons between their children and my son, knowing what I have to deal with. That’s just like sitting with a friend who’s an amputee and all you can talk nineteen to the dozen about are the marathons you run, and then you go, “Oops! Here I am going on and on about marathons when you poor thing don’t have legs”.  I just watch them ramble on, thinking, “God, you evil bitch, you! It would give me the greatest pleasure to kick your teeth in.” I have always believed some people were born with a sensitivity chip missing somewhere.  I have also met a number of people who say, “God gives special children to special parents. Be glad that you at least have a child because many people out there can’t have children.” My late neighbour had a wall hanging with the words, “Lord, help me to keep my mouth shut until I know what I’m talking about”. I’m going to look for one like that and stick it on my forehead with hopes that the motor mouths in my circle will get the message.  I just wish people knew when to keep quiet. No one has the license to tell anyone how to feel about anything.

My son was the first person with autism that I ever met, but now I know hundreds, if not thousands from groups I follow on social media and from the school he attended. I have even met people that I feel were undiagnosed but would be if they bothered to see the doctor. Because I didn’t know anyone with it, I had no idea where to go for support. No-one in my circle knew how to help me either. It was the most heartbreaking time of my life. I contacted South African Depression and Anxiety Group after realizing the wheels of my mind were slowly but surely coming off because of the grief the diagnosis brought and was referred to Autism South Africa. That organization saved me from myself. I got a lot of literature on the condition and began to meet more parents walking the same path as myself. It was small comfort. At the end of the day I still had to go back home to deal with my own problems. The fact that there are other people with the same challenges we face doesn’t necessarily solve ours. It’s like feeling hungry, and then someone tells you that millions of other people are also starving. Does that take away the hunger? I also got invaluable support from The Ernie Els Centre for Autism and therapists at the Johannesburg Hospital School.

Over the years, I have learnt to live with the autism, manage his condition better, and my emotions are no longer all over the place, but there will never be a time when I will feel that it’s OK, that I would never turn the ship around if I could.  Maybe that day will come, but it’s certainly not now.

It’s been an arduous ride so far, with not much hope of the difficulties abating. Still I’m grateful for the smallest improvement I see. I’ve come from a time when I could not sleep. A time when I cried and prayed that I would hear just one meaningful sentence from him. Now sometimes I fall short of crying that he can just be quiet for just one minute. And sometimes I can’t sleep because he will be talking even at 1am when he can’t fall asleep. Then I think back to the time that I wept that he could talk, and his endless talking stops being a major concern because I know I asked for it.

It is a roller coaster ride. One day I’m full of beans and all raved up, telling myself I’ve got this, and I can trample snakes and scorpions. Another, he does something or fails to do something in a way that breaks my spirit and I’mleft flaccid, telling myself I should let go and let God, and what will be will be. 

I’m really glad I’m past the victim phase when I thought I would never smile again in my miserable life and all I could think was, “Why me?” Now I take things in my stride. I still think, “Why me?” but I don’t cry all the time about it. Sometimes I stagger and am on the brink of falling flat on my face again, but I won’t let that happen. There are a number of occasions when Victor makes us laugh to tears, like when his sister fell and he said, “The ground bumped baby on the head”. The first time he saw someone smoke, it was my husband’s friend. He said, “Mummy, look! Uncle is playing with fire”. To most it’s just a silly conversation, but we fall short of throwing a party when he speaks like that.

On the 7^th of January, my father’s cousin passed away at the age of 57. Although he wasn’t autistic, he lived with a disability that made him very dependent. I wept quietly in my room, thankful that he had preceded his mother in checking out of this world. That’s one of my worst fears, one shared by many parents of autistic children. Dying ahead of my son would be a calamity. It’s hard enough taking care of him as his parents. Nine years down the line we still haven’t completely figured him out, maybe we never will. A person with neurotypical children and no experience whatsoever on autism would really struggle and most likely grow impatient with him, and consequently neglect him.

I’m grateful for some remarkable people God put in my life when I needed a shoulder to cry on, or just someone who listened while I ranted and raved about how my life really sucked. They were, some still are, the wind beneath my wings. My kind friends always ask about autism, what they should know, how they should handle my son, his preferences when he visits their houses, and what challenges they should expect from him and how to deal with them. It makes me feel that I’m not in this alone.

I hate autism with a passion and I abhorthat my son has it.It stretches you; it tests all the relationships you have with everyone, especially your spouse and immediate family. A number of the women with autistic children in my circle are single mothers because their partners failed to cope with the challenges of raising an autistic child and scurried for the hills.

The best advice I got was from a friend who said regardless of what the doctors or other people said or did, I should never give up fighting to make my son’s condition better. He said if you quit, then who’s going to stand by him? I will not quit, and hard as it is will try to count my garden by the flowers, not by the leaves that fall. If he ever fails to do something, it will be because of his limitations, not because his mom gave up on him.

*Excerpt from a book I’m writing on parenting a child with autism.

Related:
Autism: A Mother's Tale