CECILY PATERSON relays her experiences with her autistic son and maintains that part of the therapy was going to be fixing herself
Before that day I was a normal mum with a good marriage and three children. My six-year-old daughter, Jasmine, was a delight, and we were overjoyed to welcome our first little boy four years later, and another one two years after that. My dreams of a perfect family had been fulfilled and I was getting on with my job of being the perfect loving mother.
It was all great except for one thing.: my second child, Cameron, was getting harder and harder to manage.
“He just doesn’t seem to understand the things I tell him,” I told my friend when Cameron was about 18 months. “Maybe I’m wrong, but I think he’s way behind Jasmine when she was the same age.”
“Well, he is just a boy,” said my friend, trying to make me feel better. “You know boys: always do things slower than girls.”
“You’re right,” I said. “He’ll work it out at his own pace.”
I dismissed it and tried to put it out of my mind, but as time went on it became more and more difficult to ignore the odd things that Cameron would do. He ran away all the time, he refused to wear certain clothes, he ignored people, he threw tantrums about the tiniest things, he insisted on watching all the credits of every single TV show he saw and he was nowhere near being toilet trained. By the age of 2 1/2 he still had very little functional language, so I took him to a speech therapist.
“He can speak,” the speech therapist told me. “He just doesn’t want to. You need to be tougher with him.”
I felt bad. It had been so much easier to be a parent to Jasmine, who seemed to know instinctively what to do and how to do it and who was so much sweeter. She hadn’t thrown six or seven tantrums a day and she seemed to know how to play with other children. Cameron had no idea.
I decided the fault was mine and became the ‘tough parent of the strong-willed child’ for a few months. We had warnings and naughty steps and all the tricks of the trade going on, but nothing worked. Cameron’s behavior got worse and his quirks seemed more and more eccentric.
I still didn’t put it together or realize that I had a child with a developmental disability. I was too busy getting through each hour with a six-year-old, a new baby and this toddler who was constantly screaming, running away from me and pressing every single button in the entire house.
Finally things came to a head and I made an appointment with a developmental paediatrician. “He will be able to tell me what’s going on,” I thought. “And then my problems will be over.”
I was only half right. He was able to tell me what was going on. My son had autism. But my problems were not over. They were really only just beginning.
I was feeling panicky and anxious and horrified all at once. “We have to do something,” I thought. “He can’t live like this.”
The very expensive paediatrician wasn’t much help. He told us to get some speech therapy for him and to look up the Autistic Association.
“That’s it?” I thought. “That’s all there is?” I hit the net and began searching for something that would help our precious child. The research took all my time and energy. I felt fevered and distraught. I was running out of time. If we didn’t get this three-year-old help now I thought we would lose him. Every day it seemed that he was sinking deeper and deeper into his own bizarre little world, full of Thomas the Tank Engine and strange rituals that I had no part in.
The diagnosis had made me feel like the walls were cracking around me and I needed something to plaster up the gaps.
When I found our therapy program and the therapist who was providing it, I felt like I had found some hope. Here at last was someone who understood what autism was and what could be done. I turned up, fully prepared to pay the money, do the therapy and fix my child.
I didn’t realize that part of the therapy was going to be fixing myself.
The first few sessions were just my husband and I talking to our therapist. “We are wasting time,” I thought to myself. “Let’s get Cameron in quick.” But our therapist wasn’t in a rush.
“I want you to think through how you communicate with your children,” she said. “What kind of language do you use? Do you give them time to process?”
I thought about it. Most of my language was in the form of a command or a direct question. ‘Put on your shoes’; ‘Come on let’s go’; ‘Hurry up’; ‘I need you to tidy up your room’; and so on. I realized that I was always rushing, always wanting, always expecting and always moving. I rarely gave any of the children enough time to think and speak at their own pace. I was also always judging. I said to my daughter, who was perky and proud after one of her piano lessons, “You’re going to be quite good at piano one day.”
Her shoulders slumped and she said to me with her face downcast, “Aren’t I good now?”
I felt embarrassed to say this to our therapist. But then she asked the kicker question: “What do you think your parenting is all about?”
Immediately I knew the answer. I didn’t want to think the thoughts that had just entered my head, but I knew they were true and I couldn’t escape them.
“I guess I want them to follow along behind me and not get in the way while I do all the important things that I want to do,” I said. I took a deep breath. “And I guess that the real truth is that I want my children to behave perfectly and to appear perfect so that I look like a great parent and so other people like me and admire me.”
The sledgehammer hit and the house of cards that was my great family and my perfect parenting came falling down around my shoulders.
I would have been horrified to think that I was not really a loving mother. But when I was confronted with a child who was difficult, unhappy and unmanageable, and when I thought about what love really was, I found that I was having an awful lot of trouble being a loving parent. I was angry, unkind, impatient, judgemental and quick to give up – all things that are the opposite of the list of love’s virtues in 1 Corinthians 13.
It had seemed like I loved my daughter. She was not only beautiful but good-tempered and fairly easy to get to obey me. I had moments with her where I was frustrated, of course, but by and large she had been easy to love because she cuddled me, she giggled and, most importantly, she made me look good when other people were around. The payoff for my efforts with her was the good feelings that I got from being around her.
By contrast, it was hard to take Cameron out because inevitably his tantrums and screams would earn me some pretty filthy looks from passers-by. I knew what they were thinking because I had thought it myself before: “Can’t you do something with that child? You must be a terrible parent.” Cameron hardly ever responded positively to us. He certainly never said, “I love you,” and the payoff for my efforts with him were feelings of intense frustration and anger from his tantrums or screams.
What I realized on that day was that I was more interested in ‘love’ that reflected well on me and that made me feel good than in love that was sacrificial and took everything I had, regardless of what I got back.
My house had come down and my world had collapsed. The things I had thought were good about myself were shown up as being rubbish. I cried a lot and felt sad and beaten and demolished by not only autism but my own unloving nature, which was now on show for the whole world to see.
But God needs to take away the old so that there is room to build the new.
In our journey with autism and my son’s disability, I am learning to love people in the way that I believe God loves us. I say ‘am learning’ because I still feel like a novice and a beginner on the road. I don’t think that I will ever be able to say that I love others in the way that is spelt out in 1 Corinthians 13.
But I am given heart by the grace of God and the fact that he loved me – and all of us – while we were still in sin. God loves us while we throw tantrums and while we run away and while we ignore Him and retreat into our own bizarre fantasy worlds. He loved us before we could respond to Him and He loves us still regardless of what other people think of us or Him. He loves us as we are, even before he ‘fixes’ us.
I am learning to love my child by controlling my reactions to his tantrums and finding ways forward with him. I am learning to love him by changing the way I speak to him, by giving him more time to process and by being aware of what he can and can’t cope with. I am learning to love him by accepting the unusual things he says and does and by saying, “I love the person that you are today.” I cry with him when he’s sad, I fight for him when he needs help and I take lots of deep breaths because we are both in this for the long haul.
Of course, I don’t want my son to have autism. I want him to have friends like other children and to find his way in the world as an adult and to be able to express love and appreciation like other people do. But it’s because of his autism that I have been given the gift of confronting my own loveless nature and have been given grace to grow patience and kindness and perseverance and self-control. CW
My Story – Cecily Paterson 9 March 2012 from InFocus on Vimeo.