The sun was shining yesterday morning with a promise of a wonderful day. The day’s activities had been scheduled for a week now, and we had spoken about all the aspects and expectations each evening to be sure we understood what was going to happen the next day. This is something we find the need to do each night and in conjunction with a ‘picture’ based diary page using the same symbols or pictures every time.
We laughed, we spoke about all sorts of things and we ate breakfast. We strolled – as is our routine – through the gardens. Bees are out and about, We even saw a butterfly today. Ribies is in full colour, Cat Mint (Nepta) is in leaf and we can smell the perfume when crushing the leaves gently between our fingers. Lavender is now shooting through its winter woody stems and the green shoots can also be smelled as we brush past them.
Returning indoors we happily gather our coats and put them on. Taking to the car, we head to our first activity of the day. We drive to the Barbers for our hair cut. We have long given up having it styled and opt for the quick in and out that a crew cut allows. Always hoping there is no Que – I have these things timed pretty well these days – we walk in and are able to be seen straight away. My son sits down first – better this way in case we have to leave promptly – and I ask for a No.4, all over. We have a great Barber, someone who recognises us as we go in and he understands the need for speed, and consideration. He doesn’t engage with our son, as by this time, a look is passing over his face and head dropped on his chest I can just read the signs that the whole experience is beginning to have a detrimental effect. – We have tried a scissor trim, but this takes way too long and the fidgeting leads to difficulty for the Barber to trim neatly – His turn is over. Quietly I take a deep breath of relief. Job done for another 5 – 6 weeks. I think to myself, should I learn to to do this for him myself to save the anguish, although understood and expected, when it is actually happening you can see the hypersensitivity to noise and touch taking control. But, it is an opportunity for him to get out of the house, meet someone who will chat given chance and learn something about personal care. I have mine cut next, he sits in the chair alongside me and I can keep him focused by an endless stream of humorous chat with the Barber and keeping a close eye on him. He has only once had a seizure while in the Barbers, but when anxiety levels are high, I need to be careful.
We leave the Barbers 20 minutes after we go in. Clearly that [seemingly] small activity has taken its toll. We have no conversation and he stares at his feet as we drive to our next activity. We need a loaf of bread and some milk. Two items. Due to accessibility for wheel chairs we go to our ‘regular’ supermarket – it has to be the same one as our son will only tolerate somewhere he knows. He usually enjoys this trip as we get him in his chair, hook up the adapted shopping trolley and push off into the store. As we pass the entrance I hear a whine as the vacuum driven cash collector overhead kicks into action. ‘Oh no’ I thought and true enough ‘what was that’ came the cry in front of me, and I knew time was now against me. We maneuvered towards the Milk, got it, then the bread, got it and then someone just stepped in front of us causing us to stop abruptly. That was all it took to cause a meltdown …..
We manged to exit the store with our groceries and the usual disapproving looks from those [many] people who sadly don’t understand, but also some great understanding from staff who know us well over the years and always ask after my son when he’s not with me. I have thick skin and although I see the looks and hear to tutting, my focus is on getting may son back to the car unshackle the trolley, throw the Milk and Bread into the boot and away we go.
We arrived back home an hour and a half after setting off, but I don’t mind admitting that it felt like we were out all day.
Those who have Autism, usually have some form of stimulation that they turn to when feeling anxious. Our son loves his music and from arriving home he takes to playing his CD’s for the next five hours. The same tunes, in the same order as he did the previous day, and the day before that …
My wife and I were discussing if the final scheduled activity for the day should be cancelled, but when the music had finished our son asked what time are we going to the restaurant. Seeing he was now a lot calmer and happier, we thought, as it was planned and expected we should go. We don’t often get chance.
The meal was at our favored local restaurant where once again we are known – fondly rather than otherwise, I am pleased to say – and we all had a great time until the towards the end of the main course, when a couple came in, sat near to us and the gentlemen coughed quite loudly. It was like a starting gun, and to make it worse, the restaurant turned up the background music. We didn’t get to have our sweet or coffee, the meltdown kicked in again far worse than we had seen in a long time and exiting the building was the right and proper thing to do.
When these things happen we try to look back over the day to understand what the triggers were and how to avoid them in the future. Life has to be lived, but lived with care and consideration and believe me, if you can avoid a meltdown, you will. Maybe through this blog you will see how, sound, and touch can cause extreme anxiety which results in an uncontrollable meltdown and only reassurance and patience within a safe environment will remedy the situation.
The smallest things are the trigger, but the smallest things can also bring hope. Throughout all this experience, our son would normally have suffered crashing migraine headaches and one or more serious seizures due to chemical released in his brain due to the acute state of anxiety. Throughout the day, he had neither. It may seem trivial, but this smallest thing will lead to a better understanding of the cause trigger that we can avoid or manage better to allow his life to be just a little more at ease, and we can all smile just a little longer.
My hope in writing such a long blog today is that you may have experienced something similar yourselves and maybe wondered why, the root cause of our situation is not going to be the same as yours but it may help you consider what you have seen. I also write it in the hope that those people fortunate enough not to suffer mental illness or care for someone with mental illness, to consider what may be behind that person you may see struggling for no apparent reason. Not everyone is just ‘poorly behaved and needs discipline’
Thank you as always for reading this