“So you’re saying I’m a retard?” Brendon challenged, his coat zipped right up to his bottom lip, arms folded and stinking of attitude.
“Brendon!” I scolded, “I’ve asked you repeatedly not to use that word. It’s disparaging and inappropriate.” As usual I reddened, embarrassed at his misuse of language and feeling inadequate as a parent.
“It’s just a word,” he replied, kicking a torn piece of paper on the floor in front of his muddy trainers, “everyone says it. Like they say someone’s gay. Doesn’t mean they’re gay and gay is bad, it’s just a word.”
“Well it’s the wrong word to use for all the reasons I’ve explained!” I shook my head at the silent doctor in front of us to reaffirm my disapproval.
“It’s OK Brendon,” said Kathy, the in house paediatrician. Actually, I didn’t think it was OK but that wasn’t what she was referring to. “Having Aspergers and PDA doesn’t mean you have anything bad or seriously wrong with you. It doesn’t mean you are stupid at all, you just see the world a little differently and may have trouble in social situations.” She spoke calmly and maintained a relaxed demeanour unlike me; leant forward in my chair, arms crossed and pushing the balls of my feet into my shoes.
This was Brendon’s first official diagnosis from a medical professional. For the last few years we had been through the inappropriate /unruly /rude /defiant and obnoxious personality descriptions from his teachers at school and pushed to do various tests from dyslexia to psychological profiling.
Although Brendon had been on a behavioural plan with the school Special Educational Needs team, they had called me in to say that he showed more than the usual ADHD traits and was definitely fitting the Aspergers profile. After thorough analysis it seemed they were right and here we were with a doctors diagnosis and a whole lot of bewilderment.
“Here’s some information and some books to take home to help you understand autism better.” Kathy handed the books over to Brendon who gave them a teenage look of disdain.
“I’ll look it up myself, thanks.” He stood to his feet and went to the door. “Come on,” he urged, glaring out under his black fringe.
“Thank you very much.” I smiled and took the books and leaflets from Kathy. That was it? A whole load of leaflets and a couple of books was all I was armed with?
Brendon didn’t talk to me on the way back as I drove him to school. An uncomfortable silence filled the car. How was he feeling about this? It’s one thing to know that your kid has social issues but to have an official label attached was something different. This was my child, my perfect child.
“Are you OK?” my words sliced through the silence like an accusation.
“Yeah…why wouldn’t I be?” He remained looking forward, showing no physical emotion. But I was his Mum and I could feel it.
“We can go through this later, it’s really nothing to be worrying about.” He remained silent. I didn’t push it as I knew well enough when to stop. Although I had no real understanding of Aspergers or PDA, I had learnt over time how to read Brendon and when it was wise to let him be. He got out of the car without a goodbye and I watched as he sloped through the school gates, trying to hold back my tears at his obvious pain. I went home and spent the rest of the day reading every leaflet and as many online reports on the subject that I could find.
ASPERGERS: People with Asperger syndrome can find it harder to read the signals that most of us take for granted. This means they find it more difficult to communicate and interact with others which can lead to high levels of anxiety and confusion.
Asperger syndrome is mostly a ‘hidden disability’. This means that you can’t tell that someone has the condition from their outward appearance. People with the condition have difficulties in three main areas. They are: social communication, social interaction and social imagination. Whilst it falls under the ‘Autism’ umbrella, people with Asperger syndrome have fewer problems with speaking and are often of above average intelligence. They do not usually have the accompanying learning disabilities associated with autism, but they may have specific learning difficulties.
Yes that made a lot of sense and seemed to fit Brendon quite well. I then moved onto PDA, something I’d never even heard of before. Apparently, some doctors married the two together and some saw them as quite different.
PDA: Pathological Demand Avoidance: People with PDA can be controlling and dominating, especially when they feel anxious and are not in charge. They can however be enigmatic and charming when they feel secure and in control. Many parents describe their PDA child as a ‘Jekyll and Hyde’. It is important to recognise that these children have a hidden disability and often appear ‘normal’ to others.
Many parents of children with PDA feel that they have been wrongly accused of poor parenting through lack of understanding about the condition. These parents will need a lot of support themselves, as their children can often present severe behavioural challenges.
And that description fit him even better. I leant back in my office chair and sighed. In one of the collection of leaflets I’d been given there was a form to be completed by the parents, giving their account or experience to help both medical staff and teachers deal with his behaviour and set out strategies that would help him at school and at home. I decided to fill it in there and then whilst I was still in an emotional state; tell it how it is from a Mother’s point of view; what it really feels like to have a son whom you love to bits and yet cannot seem to control no matter what you try to do.
I took a pen lying on my desk and began to write.
Layman’s terms from a Mothers experience:
Be prepared for strategic games at all times. If you can’t play chess, learn it now as it will help. You have to be ten steps ahead and make them think that what you want them to do was their idea all along. This often doesn’t work. Be prepared to be out manipulated and out smarted at every turn. Always be ready for inappropriate responses and behaviour; if your child thinks someone’s got a big arse or he doesn’t like them, he’ll tell them. To others your child will seem like a cocky, obnoxious reprobate; sometimes you will think the same but you will also see the vulnerable person who can’t cope with reality. Do not buy nice things for your house for they will only get trashed when he goes on a MELTDOWN. You will be shown an honest and somewhat refreshing individual who is full of wit and charm but you will also be taken swiftly from that euphoria and kicked into the detritus of despair. Know that you will be judged by those that are ignorant on the subject of autism and think you clearly have no concept of parenting. Have tools that enable you to cope in a crisis like: good red wine, comedies and excellent friends. And chocolate. Definitely chocolate.