Diagnosis: AUTISM
To our disbelief Aaron started to show signs of autism. We were terrified. After all, we’d just watched ten years of the David movie. The movie of autism. And when you’ve watched a movie like that you know what’s going to happen. And when you’ve seen your first child deteriorate, battle and regress over ten years and suddenly you’re faced with another child going down the same path, it’s extremely frightening. Facing a whole new world of worry you can’t describe is paralysing and you end up not knowing what to do.
Many parents know what it is to have their child go out at night and worry until they’re home and safely tucked in bed. But once they’re tucked up the worry goes away- at least for now. With Aaron, that worry was indefinite. It was there all the time. Will he be like David? Will we be able to save him? That was our constant companion – worry. When we went to bed at night, and woke in the morning – it just consumed us.
Denial
At the beginning we’d try and reassure ourselves that it wasn’t so bad – it was just a phase he was going through. It’s difficult to put our feelings into words over such a long period of time. It wasn’t minutes, hours, days or weeks. It unfolded over months. So from one day to the next, if he had a good day then we’d be okay. Then he’d be almost okay and we’d convince ourselves he was fine and that we’d been over-analysing. From having a child like David, analysing everything was second nature to us. Eventually we came to a point where things changed. We turned from people who were paralysed and hoping this wasn’t what we’d thought it was, to one day deciding: this is a problem and now we’re going to deal with it. Suddenly everything felt so much better. Worrying about something is always worse than the thing itself.
Critical action
After ten years of dealing with David and never giving up, always fighting at full strength and not, getting burnt out, I now had to raise my game completely and fight for two kids. If I was ever going to burn out it was now. But I didn’t! I kept on fighting and dug very, very deep to save Aaron. I analysed every bit of his ABA programme, making sure he achieved all his goals on time. In every sport or discipline there’s always the expert, the best in the world, the person who’s more skilled than anyone else. The tennis player with his precise shots- absolute perfection to watch. When he wins, he’s playing against the best in the world. There are millions of people who have practised tennis over and over again, trying to qualify for the top. So when you get to that level, every inch of your game has to be perfect. At that point in time, I was at the top of my game. I was the best at what I needed to do and it was out of pure life or death situation. I had to be a skilled tightrope walker, and if I fell it would be to my death. I had no choice but to make it to the other side. That’s how I fought this fight!
Unlocking his voice
The many months when Aaron didn’t speak at all were extremely worrying. Again, we knew what this meant – having had David nonverbal for so many years, frustrated at not being able to communicate his needs. So for Aaron to be silent was a very scary place to be. When he said his first few words, we felt this enormous weight slowly lifting off our shoulders. It was incredible. Each and every word was so precious and meant so much. Each sound was like a birthday celebration and we didn’t take anything for granted. I lived and breathed Aaron’s war. We used ABA and it worked.
Keep hope alive
You always have to have hope and look at the positive in everything- no matter how bad it seems. If you can see some light around the next corner you can carry on going in the right direction, but the second you lose hope you’re finished. This means that you have to find ways of keeping that hope alive. That’s the best advice I can give any parent. When you’re trying a new diet or supplement if one doesn’t work, try another. If you’ve tried an ABA technique and it didn’t work, move on to the next one. If you tried a motivator and that didn’t work- look for another one to replace it. There’s always something else. Keep hope alive and you’ll succeed.
A quick fix
There is no magic one thing that will make autism vanish into the air as if it wasn’t there to begin with. It requires heavy sacrifice and persistence to beat autism. Many parents believe that psychiatric medication is going to fix their child. This couldn’t be furthest from the truth. Some parents feel that their child gets worse on certain biomedical treatments and this makes them question the protocol. Uncovering and treating the underlying causes is tricky. Its’ going to take time. Some things will work. Others may make the child worse which means you take a few steps back before you take a few steps forward. You have to have the guts to weather the storm. I’ve seen parents throw in the towel claiming “its not working” to early on in the treatment protocol. And without intensive ABA and I mean five to seven hours a day, the child is not going to make that come back from autism. I’ve seen parents chase a silver lining hoping to get to the treasure at the end of the rainbow. Without ABA the child is not going to miraculously suddenly start talking or learn those skills they missing. It needs to be taught and it takes hours upon hours of good quality and intensive ABA to get there. It also doesn’t take six months on an ABA program to turn things around. It took us four years seven hours a day to recover Aaron. And David received ABA for his life. That’s how we got him to become independent at home. That’s how he potty trained, learnt to eat different foods, learnt to communicate with his ipad, learnt how to make a sandwhich and tie his shoe laces. ABA managed his behaviour when we were desperate and struggling to survive one more day of his aggression and self-injurious behaviour. Parents will stop ABA at this point claiming it’s not working. This is the biggest mistake as the child with behaviour needs aba more than ever.
The autism battlefield
First realising your child has autism, is similar to being a wounded soldier on the battlefield. You find yourself lying face down on the ground injured, and there are bullets flying over your head. You try to take cover, but fear overcomes you and you stand frozen, unable to make a move. The choice is yours. You can lie there and succumb to your wounds or crawl wounded to the helicopter on the hill that will airlift you to safety. No one can assure you of making it home- but you do have a choice. Even though we were wounded, we chose to crawl as fast as we could to safety.
Life today
Today Aaron is in Grade 3. He attends a mainstream school and has recovered from autism. Looking back, Aaron actually loved his years of ABA and all the attention he got. He loved playing with his toys and the interaction with his ABA therapists. He would never have learnt to speak without incorporating PROMPT into his ABA program. So, to those people who say ABA is destructive and repetitive and just creates robots, that’s complete rubbish! If ABA is done in the correct way, the child can be motivated and absolutely enjoy the sessions. ABA is regarded a medical necessity and an evidence based treatment for autism. Endorsed by the American Academy of Paediatrics it has its roots in the principles of psychology and has been time tested as being the most successful intervention for autism. Grouping children in a special needs classroom, all with different deficits, and often diagnoses is not going to support them in learning to their best potential. I cannot begin to imagine how any school sets a curriculum for a classroom of children on the spectrum. It simply doesn’t work. Each child on the spectrum is an individual and each individual has their own specific deficits. One child on the spectrum is not going to learn anything but maladaptive behaviours from another child on the spectrum. Once we have pre-requisite skills for school we want to create those social opportunities so that children can model from their typically developing peers.
ABA was the only way we could teach David new skills and today he works with a chef in the kitchen everyday. By using prompting and reinforcement techniques from ABA we developed a number of task analyses to teach David how to be successful in the kitchen. I had never imagined it would be possible for David to master the skill of cutting a carrot, cucumber or potato into small cubes using a sharp kitchen knife. Not only has he learnt how to bake and cook, but we also have a weekly schedule for him to follow, which helps him to check his stock and determine what he needs to buy for the Deli. David looks forward to making biscuits thanks to ABA. Dave’s escapades in the kitchen have been very successful and he continues to learn new things to cook or bake because we can teach him how – drawing on the principles of ABA.
Watching the lights come back on for Aaron, after he’d been in the dark for so long, was simply magical. Never underestimate the power of persistence. Own your story so that you are able to write your own ending. And Never, ever give up! There is so much hope! Just find a way to keep it alive.