People with autism can find communication very difficult, sometimes impossible. This leaves them feeling isolated and frustrated, which in turn leads to behavior problems. How terrible must it be not to be able to make yourself understood, something most of us take for granted.
John’s desire to communicate was very strong inspite of him having had his left frontal lobe removed (the part of his brain that develops speech) at the age of two and a half. He has learned over the years to mimic words and copy sounds; he can now make himself understood quite well once you get to know him. As you know from earlier posts ‘John Speak’ can sometimes get us into trouble!
Up until John was six he hadn’t slept through the night once and for the previous two years he had hardly slept at all. This was as a result of the operation on his brain and not something for which we were prepared. He was very hyperactive and as a consequence we were worn out. We took it in turns to have a nights sleep each, quickly learning that ‘Hide and Seek’ at 4.15 a.m. on a dark, cold Tuesday morning isn’t as much fun as it sounds. Eventually plans were put in place by social services for him to go to a family for a weekends respite once every five or six weeks. This would give us some much needed rest and a chance to go out for meal together.
We were introduced to a lovely young couple with backgrounds in social work. After 6 months of getting to know eachother, John going for tea and spending many Saturday afternoons in their company, it was time for his first sleepover. Just one night to begin with. I started to get jittery at the thought.
They had a son of similar age to John and a dog called Hickory, a beautiful golden spaniel. John had never been up close and personal with a dog before and he didn’t seem too bothered. Hickory loved John and would jump up or dash around his legs wanting him to play. John didn’t respond to Hickory’s boisterous behaviour, instead he would just stand still until hickory got bored. Dogs were an alien species to John as you couldn’t ride them and they didn’t sing nursery rhymes.
The first night went better than we could have hoped for. John had a fantastic time and they loved having him. He had eaten them out of house and home, slept like a log (typical) and been happy and giggly all the time. His dad and I hadn’t slept a wink all night, fretting about how he would cope without us. I cried most of the time and couldn’t relax for a minute. I tried not to phone too often but in reality I must have rang them every hour. It is so hard as a parent to first of all admit that you need help, and secondly, to live with the guilt that you are handing your child over to someone else.
We couldn’t believe how well it had gone and the relief was enormous. Life was looking up for all three of us and the respite family became good friends of ours. By Johns third weekend visit we were all comfortable with the arrangements, John adored them both and they loved him.
That third weekend would prove to be a turning point in Johns communication.
Even at that young age John carried his radio cassette player everywhere listening to nursery rhyme tapes, he didn’t wear headphones in those days. He loved to have it on full volume, falling about in hysterics when I had to yell over the din of ‘Ring A Ring Of Roses’…..’Turn it down John for Goodness sake’ and waggling my fingers in my ears….John would turn it down for two minutes before turning it back up and giggling helplessly. It was such a great game…not.
We received a phone call on the Saturday afternoon to say that everything was fine but John had been a bit quiet on Friday evening and had not wanted to come downstairs after his bath. He didn’t indicate anything specific was wrong but kept shaking his head and saying ‘no’. He was however very happy to play in his room and his appetite was fine. They each said to John ‘what is the matter?’ several times. They realised that he either wouldn’t or more likely couldn’t tell them. As he wasn’t distressed they decided to see how he was in the morning.
John slept well that night but again didn’t want to go downstairs for breakfast, indicating he wanted it in his bedroom. In the end they carried him downstairs and he sat on their knees happily eating dried cornflakes, he doesn’t like milk, and listening to his tape on full volume whilst their ears bled.
Again they asked John what was the matter, as he reused to get off their knees preferring instead to stay put, enjoying lots of cuddles and tickles. Suddenly John took the young ladies hand and put it on the side of his face, something he does with me if he needs comforting. He likes you to rub it gently with the back of your hand and it calms him. Anyway while she was doing it John was listening to the nursery rhyme ‘Oh Dear What can The Matter Be’. He kept rewinding it over and over, then he stopped it on the word ‘Matter’ several times and pointed to the radio cassette player. Then he played ‘Hickory Dickory Dock’ over and over and eventually stopping on the word ‘Hickory’ and pointing to his radio cassette player again. By now she realised that John was not just playing random bits of the nursery rhymes, he was in fact picking out words, so she wrote down ‘matter’ and ‘hickory’ without understanding where it was leading to. John then played ‘Old Mother Hubbard’ and did exactly the same thing eventually stopping the tape on ‘dog’. She wrote it down and looked at the words….’matter, hickory, dog’
She realised that John was saying, in reply to her asking him what the matter was….’the matter, was their dog Hickory’…. She jumped up and danced around the room with him, so delighted and proud of him for working out how to tell her. She was crying as she was telling me and I was crying as I listened. From that moment on Hickory was not allowed in the the lounge when John was there and John had the best of times when he shared a weekend with them.
Clearly John was scared of Hickory jumping up and barking, infact he was so frightened that he knew he had to work out a way of telling them or he would not have coped, and his behaviour would have become challenging. How clever is that for a little six year old boy.
He continued to use this method of communication for a few years until his vocabulary grew and he became more proficient in Makaton sign language. He remains to this day, endlessly patient if you cant quite understand what he is saying and he will find other ways of helping you work it out.
I am constantly amazed by John and my heart bursts with pride when I recall and share these precious memories.
I love you my gorgeous clever boy.