Three quarters of the way through the Easter break and to say the least my emotions have had to be kept in check this week!
Have any of my readers ever had the experience of smiling sweetly at a family member or friend or even the staff that work with your child, as they ask you the ultimate holiday question: Have you had a nice holiday?
Only Parents of children with Autism will understand that for our Special children, the holidays are like sugar and spice! They are either filled with days of sweetness, happiness and wonder, or, they are filled with spicy hard to digest days for both Parent and Child. Children with Autism struggle with the Holidays. It is not that they do not want to be at home, actually their home is often where they are most comfortable, it is that their day changes from routine, to care free days with no pattern or design and this can throw them for a loop.
In Jay’s case, all his issues are made worse by this constant transitioning from term to holiday. Lately his Phobias have got worse again with the appearance of winged beasts in his space and the presence of a huge amount of tourists in our town with their many dogs. Lots of people with dogs are very kind to us, picking up their dogs or popping them on leads as they can clearly see Jay is scared. They see his behaviour and the Ear defenders and they put two and two together and most people are lovely. Some, are not. One woman, when we asked her nicely to move her dog away from Jay told us where to go. Moving on , yes we are having a hard time out and about with Jay at the moment. He is also stressed in the home too. He will go in to Meltdown from something on his favourite channel or on his computer, however these cannot be switched off, oh no, they have to stay on. I think it is because he believes they are broken when they are switched off. It devastates him and so they stay on. All Jay’s reactions to things are driven by Sensory Overload and for Jay there are triggers everywhere!
Laughing out loud as I write this I refer back to the smiling sweetly at people. Everyone says to me ” are you enjoying the hols? Did you enjoy the hols or Christmas or Easter or Jay’s Birthday etc etc? Well, quite honestly if I were to tell the truth they would probably judge me and call me a bad mum. The truth is, what these people cannot seem to understand and just do not get, is that for us the Holidays and special occasions are really hard. When we say this we are not being negative. It is the truth. On Jay’s birthday we took him to a Sealife Centre, and to the public who follow us I said yes he had a lovely birthday he loved it. That is actually a lie. He did not love it because half way through a Bee flew at him and ruined it and he was Anxious and in Meltdown after that so we had to leave! On Christmas day he was overwhelmed and suffered Sensory Overload. At Easter, he had a great first week then the four day weekend he was in Meltdown and Anxiety and OCD and Phobias crept in again, causing our little man real distress and us because seeing him like this is the hardest thing.
Laughing out loud again- because when my family and friends and staff ask me if we had a nice holiday I will again smile sweetly and say yes we had a lovely time! It feels false. It feels like I am not saying the truth because I don’t want to upset people or that they will judge me. The lies we tell just are to please people and to tell them exactly what they wish to here. Life is simply not like this. It is not always happy children on holiday , celebrating their birthday or a special occasion. For us, these events often mean the hardest days we ever have in our roles as Carers. Believe me I want it to be different, in that I wish I could be honest with everyone, but at the end of the day, some of the time off is good and happy so one must not be too negative. Laughing aloud again, as I sit here writing this , having calmed my son three times in an hour before he went off with his Respite worker. I even find myself lying to my Husband when he gets home because I do not want to bring him down. I say all is well and I am fine, when really I have been shouted at and told to go away and have had to see Jay through a Meltdown and I am completely shattered through that, but I force a smile and say all ok how was your day?
True I am using a daily schedule to support Jay so that he knows exactly what he is doing each day, and this gives a sense of routine but it is not the same as the School routine. With Autism the child will always feel unsafe without those routines and that’s why they have high levels of Anxiety and other problems. Recently I was honest enough to admit to my Respite care coordinator that I was feeling a little stressed over Jay not being able to step foot in my garden or that he cannot be out at all with out the Phobia and Anxiety draining him and me, and he said it sounded like I was Anxious too. Dam right I am! It is very hard and I am an outdoor lass who loves Nature so it is doubly hard for me to stay in for Jay, although I do it for him whenever he has shown the need to zone out and come back to his safe spot. Constantly having to calm a child whose Anxiety levels are always high in the Holidays and always at the Fright or Flight level takes its toll on the Parent. For the child it is ten times worse. It makes me so sad that Jay has to live this way, and no matter how I feel, his feelings will always come first. I always return home if he is in Sensory Overload, I always come home if his Phobia hits and I give Jay space when he needs it to re set and re group. I listen to my own advice and switch off from the turbulent emotions running through my very soul, and get on with it, but it just makes me laugh because I will still lie to whomever asks me if we had a good holiday! I know many people lie about their true state of mind when asked if they are okay, but for us its all the time every time. I honestly feel like even with family and closest friends, that I cant tell the truth. They would listen, and then probably make their own judgement as that is what people out there do, although my family do support us. People can say they understand but they really don’t. You have to live with Autism to understand just how consuming it is for the child and the entire family. This is why using Respite is a good idea , as I said last post looking after yourself too is vital as you are no use to the child in a state yourself.
I will go on record on here as saying I am a true believer in Respite, both for the child and the Parents and Siblings. Always accept any help you are offered because there are days when the Respite can save you all, believe me! When everything calms down again I shall reflect on yet another holiday with Autism, and perhaps even smile at how we got through it and came out the other side reasonably well. Once more I need to stress how the child is never to blame. It is the Autism and in Jay’s case, the delays that lead to the issues and the reason we carry on is through pure love for that child. Love carries us forwards, and enables us to move ahead to the next day and face it head on. So the next time you ask a Mum with a child with Autism whether they had a good holiday perhaps be understanding that they probably are under huge stress but don’t want to say so. It is always worth digging a little deeper as they open up to you and tell the actual truth.
Never judge a person until you have walked a mile in their shoes!!