Having a child who has Autism is very fascinating!
Jay is constantly changing, and no two years with him are ever the same.
Autism- this condition has been present in Jay since birth, yet looking back, so many traits have developed over time, some that were always there, such as Stimming, and some new ones that rear their dark heads from time to time, becoming quite difficult to manage and live with!
Last post, I promised to talk about OCD. Obsessional Compulsive Disorder! According to Jay’s Psychologist, the OCD that exists with Autism comes in the nature of ‘Traits’ rather than full blown OCD, which can also exist outside of Autism. I accept that, however, Jay’s OCD controls his life and ours , so it is very significant whether it is just ‘Traits’ or not!
Those of us who live with or understand Autism, know that many people with the condition require sameness and control in their lives. This is a Paradox. It is simply proven to be true by many people with experience in Autism, and in those who have it.
We never saw OCD in Jay until he transitioned to Year one two years ago in his mainstream School. Things began to change very fast. Being in Reception and in play based learning, meant that Jay had control of his day at School and the way they were taught was well in line with his Delayed Development. However, change was to come within a few weeks of starting in his Year one classroom, where more structure and less free play was expected of the near six year olds. This did not bode well for little Jay, who had been able to manage Reception play based learning quite well. The way a Year one classroom is presented, is different from a Reception or Nursery class. The whole environment is more clinical and more conducive to study and to the main elements of Maths and English. There are less picture based posters and less play and sensory based learning areas.
Very soon in to the year, Jay began to seek control in other ways, as he felt out of control with this new classroom less suited to his needs. He began to switch the lights off, close and open doors, drawers and cupboards, turn objects and books upside down, and switch off computers. He cried whenever his Teacher opened the cupboard, or opened the door and would run screaming over to them to close them again! He would knock down displays as he wanted the objects to look a certain way, and would barricade the door so people could not open it! The staff could see he was showing genuine emotional responses to the opening of doors and turning on switches he had turned off. The Staff were keen to help us to get to the bottom of it all. Luckily they remained calm about it, helping Jay to manage his feelings by allowing him to have quiet time with his TA.
However, no one seemed to realise there must have been a reason for this behaviour. Children, SEND or not, rarely display behaviours for no reason. Ironically, it was not a School Staff member who hit on the reason, or even me! It was , yet again, his Psychologist. I went to see him with Jay and told him everything, and within ten minutes he had enlightened me to the real reason behind Jay’s strange behaviour and the disruption it had begun to create. The Doctor said that because of Jay’s Development Delay, coupled with his Autism, he obviously was not coping in the more rigid Year one environment because it was not conducive to meet any of his needs. Plus it had started with Year one. There were no play based learning, or Sensory play areas. There were no areas to hide away in ‘enveloping’ dens or hides and no pictures to support Jay’s learning. Jay, had, at that time, the brain of a toddler, who could not read or write and the room made as much sense to him as it would’ve to a baby. Once again, this man had understood my child better than me! He said that, because of these things, Jay had felt out of control of his world and unsafe in this new room, not equipped for his developmental or sensory needs. He was really trying to gain back control by going around the classroom changing things and this made him feel safer, calmer and more in control. He suggested the School make many changes to the room to meet Jay’s need so I headed in to School to share the ideas with them via the Senco.
The Senco’s first comment was did the Doctor want Jay to go back to Reception because that was not possible? I said that he had said that Jay could learn in the Year One room if adaptions were made. The Classroom was adapted to provide areas of Sensory based play such as sand and water and shaving foam. It had tents added for dens and an area especially for Jay with his sensory toys there at all times. In fact, the room looked so fab by the time they had finished, that I was told the other children preferred Jay’s areas to their own! The changes made, helped Jay to settle better and I am lucky the School acquiesced and were willing to make the changes.
At home, Jay was doing the same. He was shutting doors, switching on lights, closing cupboards and drawers and when his two siblings entered a room he began to force them out in case they changed something. It was very hard and stressful, yet they bore it so well bless them. A solution presented itself like it often does at breaking point, when a friend suggested I make Jay a fidget box full of benign light switches, loose bolts, bicycle bells and old phones, in which to fiddle with and open and shut etc, thus creating opportunity for Jay to go to his box whenever he felt need of it, instead of using the household instead. Did this work?
Well, it worked in the beginning. The OCD behaviour went on and on and began to change and present in other ways. He would turn all my ornaments around, and turn books to their back cover. He began to request that I cut out paper pictures for him of his favourite characters from books or from interests. I made planets and insects and animals for him, and once drawn they had to be cut out. But not in the normal way. I had to cut around the shape but not right up to the shape. If there was a cut in the outline of the drawing Jay went into Meltdown. If the paper bent in shape, Jay went into Meltdown. If the drawings were not done a specific way Jay would go in to Meltdown. He wanted control of everything! Our Care Manager witnessed this first hand one day when she came to see us. You may say, why not just say no? I have learned never to say the word ‘no.’ It hurts them! Hurts their feelings as it is so definite and so final. To a child with ASD ‘no’ is too final a comment and leads them to despair. I would say instead, ‘Not now or we do it later.’ So I made the items whenever he asked me to as a way of helping him remain calm and focused, because if it all went well, the activity calmed Jay’s OCD. It WAS the OCD driving him to want the drawings made and the repetition of making them in order, and over and over again also helped calm him. How many mums would make the same characters on paper every single day for a period of time without going crazy and saying ‘no we are making something else?’ But you see, if I say I wont make them, Jay’s face crumbles and he bursts in to heart felt sobs and will be so sad and then develop awful Anxiety. It goes back to my earlier post on parenting them in a different way. A neurotypical child would not ask for drawings of the same thing again and again and would also understand when it is time to stop. Jay does not understand. It is that simple. So, I do it, I do it to keep my son calm and happy and I need the patience of a saint to do this every weekend and holidays.
Below are Jay’s cut out drawings of a well known Caterpillar story, and he places them this way in their order every single morning before he does anything else.
The drawings are placed in the same sequence daily and cannot be moved without a Meltdown happening. Jay is seeking control yet again as a way of calming his anxiety.
Over the years the cut out paper drawings change depending on his interests. We have had planets, minibeasts animals, pets and weather pictures, all are sequenced and carefully set up each day. It makes it hard to clean and to sit down!!! Jay will also cover up holes and gaps in his house and at the side of his bed-he fills it with soft teddies. Holes and gaps drive him nuts and bring on bad anxiety. He had holes in his ceiling once, and every night he would stare at them and say ‘ don’t like holes ‘ He would ask to be picked up so he could see them closely and would not sleep until his Dad had covered them. I allow Jay to have this control , because it does not hurt us or affect us, other than helping him, and because it helps him to self regulate! This is OCD and Jay feels he has to do these things to stay calm. His Autism is driving these OCD traits NOT the actual condition of OCD.
Jay has to have the same food every day. Any deviating will result in Meltdown. Jay eats a very healthy diet, yet each food has to be served the same way and away from other food and separated in bowls so it does not touch. His packed lunch is the same each day, and again, must be presented in the same format each day. He is restricted to only four main meal options as he has food sensory issues and phobias, therefore all his food is always the same for each meal. Luckily he will eat a good mix and so he remains healthy. It is his OCD that means certain foods cannot touch or be changed and again he needs this to feel safe and in control. Because he has enough of a balanced diet still, I do not worry and I give him the same each day. Some would not. That is up to them, but as you all know by now, I will support my child and help him feel safe no matter what, and without judging him.
Jay will wake up on a morning and when I go to him, he has never ever said hello or good morning. I say it to him of course, but he brushes me to one side to begin his rituals and OCD habits. He will get his Spider and soft toys and take them downstairs, then he will arrange his pictures on the sofa, move the cushions, put on his favourite children’s channel that all toddlers love, then rewind four programmes using our remote, which he believes is his, and then expects his breakfast on the table ten minutes later. God help us if the TV is off or he misses a show or cannot rewind it, if it goes wrong he will go in to Meltdown. All these things are, to him, much more important than saying hello to his mum! I totally get this. Other mums would say things like oh how rude or make him say hello! It is the difference between the Autism mum and the regular child’s mum I’m afraid, and believe me when I say that my older two DID say hello and were expected to speak to me. It is all about understanding! If you continue to expect a child with ASD to be the same and act the same as neurotypical ones you will not get anywhere. I say that nicely. It is the Autism that makes Jay forget to greet me as he does not see the point in it. I am there-that is enough for him and that tells him he is safe. All of the etiquette of the world means absolutely nothing to him, no matter how much I try and teach it, he will only say what is necessary, not what society says we should say! Jay lives in a completely different world to others and his world must be within his control for him to be happy. It is what you CHOOSE to act upon that defines the bringing up of an Autism child. I choose to ask Jay to say goodbye to family when they leave, and I choose to ask him to say goodbye to me when I go anywhere and leave him with a Carer, but I do NOT choose to interfere with his morning rituals which are necessary for his happiness and his ability to face the day!! It really does not hurt me or should I say I do not let those sorts of feelings in. This is because you have to learn not to take this stuff personally. It has little to do with you or their feelings for you. It is actually Literal thinking. They only do what is necessary and the way their mind works falls more to Literal thinking and so saying hello, when all they their mind tells them to do, is to do their rituals or OCD activities, is exactly what they will do, with little thought for you. We cannot ask more of any person, than what they are able to truly give, and the key to accepting these traits is in understanding that it is not in our control, no matter how much we like to think it is! The Child’s Autism will rule them not you the Parent in situations like these. They need us to understand them and react only when it is absolutely necessary to their safety or that of others.
Choose your battles!
Posts to come:
Autism and the Natural World.
Rigid, Literal and Analytical Thinking in the Autism Mind.
Autism and Phobias- helping to over come fear and phobia associated with Autism.