So, here we are at the ‘ Summer Holidays!’
It is a time of fun and happiness and trips out and playing with friends and enjoying the Summer sun!
Yet whilst everyone is enjoying their Summer, there are group of Parents who are struggling and going through a very hard time with their children at this time. These children have one thing in common-they are children on the Autism Spectrum
Ever since I can remember, Jay has had problems with life’s transitions. The most profound of these has to be the transitions year round of Term time to Holiday time! He simply cannot compute it or process it in time to handle each change. So, when he has to go back to School, he will take a fortnight to settle back in and stop having Meltdowns each day because he has to go back to school. Likewise, when the holidays begin, Jay will spend the entire first week having Meltdowns, Anxiety and crying a lot, and its because of the Transitions! Once he has come through the first few weeks of the Summer Holidays, he will calm down into a new routine, although the Anxiety does continue throughout the Holidays because of lack of routine. School life brings a solid clear sameness of routine, which a child with Autism clearly responds to. However, the holidays are different. No matter how many routines I try to add, he will still meltdown and have Anxiety-I try to do my best to create routine and help Jay!!
In my last Blog post I talked about ‘low demand’ and this is also the way we deal with this onset of Meltdown and Anxiety, which happens in the first few weeks as we see Jay attempting to process the change. We keep demand low and this is following the advice of a Professional. It really does help because as Parents we are tempted to get going with the Holiday fun at the very start of the Holiday! Sometimes, just allowing the child a peaceful, quiet start to their Holiday can reduce the level of intensity to the responses the child has. We have tried and tested this method these Holidays by actually making the mistake of a trip on the first day, which we very much learned the hard way that it was too much too soon and we retreated back home fast!
The last few Summer Holidays have been a mixture for us. Some good days happen and some bad days. However much we try to make it as wonderful as possible, we still see many hard days with Anxiety levels being high and Meltdowns frequent.
We use our Now and Next board to ensure Jay knows what is coming next each day, and I use this every single day and I cannot recommend them enough. Part of the issue with Transitions, comes from not knowing what is going to happen. This makes children with Autism anxious and unsure and if no support is given in the form of visual aids , it is going to be doubly hard for the child to stay calm. The Now and Next board is negotiable and can be changed with the child at the centre of the decision making and with the adult clearly showing to the child any change of plan, in good time to allow the child to process the change. When people think of Transitions, they think of the big ones, such as changing class or School. The transitions I refer to, are the daily elements we all do each day, and the changes to parts of our life that happen to us all. Any of these Transitions can set off Anxiety and Meltdown in Jay and many others. I am afraid that no matter how brilliant we try to be and the devotion we show as Carers, we cannot take this away and the full impact of these daily Transitions, are going to affect the child. All we can do is put in place certain ideas, that help the child to cope better with it.
We are at the end of the first week of this Holiday, and Jay has had four Meltdowns, and has been anxious about the Thunder Storms we have had this week and also the hot weather. Today, I decided to allow Jay a quiet day at home and we have done lots of activities to keep his mind occupied.
Above-Dot to Dot drawing, Computing, and helping Mum dust!
I have a large family , and they all speak of the Holidays as the best time, and they wander around on trips every day and are able to go where ever they like! This is what my life was like when my older two were young. With Jay, we just cannot go to busy family days out in places families go in Summer. I am going to admit it to my readers , – I find the summer holidays long and hard work and quite often lonely, as I cannot meet friends to do the things they do with their neurotypical children. Jay and I make our own happiness by enjoying each other’s company, doing simple days and simple every day tasks together, and walking around in Natural places that are quiet and calm. I love these times with my adorable boy, but I am not ashamed to admit that the constant crying, Anxiety and Meltdowns, which come with Autism, get me down and I have to fight all the time to keep it together and not cry myself, when I see him break down. I would not be much use to him if I did cry too! I keep the emotions for night time when Jay is sound asleep and dreaming of his beautiful world. I just do not think that anyone with regular children have any idea what is it like to have children with Autism in the long summer break! If only more Mums were more understanding and less judgemental of behaviours and Meltdowns, we, the SEN mums, would perhaps venture out more to places others go, yet we do not live in that world yet! I would love to see a world where Autism was accepted and valued and NOT judged by mums who quite frankly have no idea what it is like. I do not resent them for that as they cannot help that, however they could be more understanding and less judgemental-yes that would be good! For the moment, I have a very routine based day with Jay, in which each transition is clearly visualised and warnings of any change are given to him, in a way he understands. I also qualify for a lot of Respite care where I deliberately choose trips for Jay that are Sensory based, such as Sensory Rooms and Hydrotherapy. I do not choose trips that are in busy places anymore, because Jay cant handle them. The Sensory trips are to emulate Jay’s SEN school environment as I can clearly see that one of the triggers for Meltdown in the Holidays, is Jay’s lack of access to Sensory provision. He has access daily to this at School and clearly misses it in the Holidays so his Respite carers provide this for him. Jay is so much calmer on the days he returns from swimming in a Hydrotherapy pool or time spent in a Sensory Room so it is obvious to me that is what he needs!
Later in the summer, when Jay is becoming used to his new routine, the time will come for yet another Transition! The return to School life in September! Then, the endless rounds of Anxiety and Meltdown will begin again, as Jay desperately attempts to process the newest change -the adaption to the School day after six weeks of no School.
Life is full of Transitions! I know this! When the time comes for us to leave a place we are in, we say ” Five minutes Jay , then we will go” When it is time to go we will say the same simple phrase ” Time to go Jay” So, we give a time related warning or a countdown, then an ‘absolute command.’ The phrase, ‘ Time to go’ is absolute because it is not debatable it means ‘now’ We have found that if we say “lets go” or something like ” we are going,” they just do not work. Only a clear, concise, absolute message will process in Jay’s mind and he then responds to that and comes away calmly too. We started this three years ago, because every time we told Jay we had to leave somewhere, he would go in to a meltdown. In the presence of many onlookers! Counting down the time, or giving a number that is time-related, helps the child get ready for the transition or change, and giving the command will help them connect it with the time scale they had. We find it works and we have used it constantly for transitions for three years successfully.
Five more weeks to go for this summer Holiday and by using all the strategies we have in place for Jay,we will hopefully help him and support him, throughout the Holidays and the through the Transition of School beginning again! I go forward with a positive attitude, and a warm caring heart for my little solider,who quite honestly in my mind, is a brave soul who shows bravery and strength every day as he moves through his life of Transitions in his Autism Universe! Love him so much!
Next time: Meltdowns– What is a meltdown? How is it different from a Tantrum? Why do they happen and how can we help? -Finding the triggers behind the Autism Meltdown!