T has been with us for about 6 months. He is 10 years old and is diagnosed with ASD though it seems quite mild. Some of his symptoms that are attributed to ASD could also be just down to the fact that T is a 10 year old boy. In general he is a very happy lad but one who has moments of anxiety and has some problems dealing with his emotions. Because of his condition he does get fixated on things so he has a strong passion for cars and certain movies and TV programmes and at the moment he has a sometimes unhealthy obsession with Loom Bands (tiny little elastic bands that the kids make into bracelets).
I am married with three children, one at home, one at University and one living just down the road, and I am the main carer as my wife has a full time job as an Assistant Principal at a Sixth Form College.
Friday 19th June – Thursday 25th June
The School Trip
T has his school residential trip this week which means he will be away for 5 days but it also means that he will be very stressed and anxious about this, before and during. He won’t admit it but he will be and so because of that it will be tough bit of preparation to get him ready and to get him to see it through to the end.
The thing is everything that a school trip stands for goes against his condition. Firstly his usual routine will be broken so that his security that comes from knowing what is happening, where he has to be, will be broken. He will also struggle with a new set of rules and boundaries. And on top of all that, knowing the way these trips go, he will not get an early night all week and he needs that regular amount of rest. I could talk to the school to try to encourage early nights but how could I ask the school to get him in bed for 8 each night when there will be discos, late night fires and midnight bug hunts for him to miss out on? If I do that he will miss out but if he stays up late then his ability to manage himself, to stay calm, will be much less and he might miss out anyway. So I am pretty sure then that we will get a phone call at some point in the week saying that he is on his last warning and that if he does not start working with the group, listening to instructions then he will be coming home. This is exactly what happened last year and I have no reason to believe it won’t this year.
Before the trip we needed to get some new clothes but that is not the easiest thing. I start by sitting him down with the list and checking off what he has and what he needs. But as soon as we start he does not want to do it and as I make suggestions he closes down. He will need a waterproof coat, a lightweight walking coat or something similar, but as soon as I say that he just refuses saying he does not like the material. I understand this, the senses and Autism are well known, but he must have a coat. Eventually I allow him to take his thick school coat as that is the only one he’ll wear even though I know it’s not suitable, it is summer after all. Then he needs wellies but he only wears his skiing boots but I think at least they will keep him dry so I let that go too. Finally he needs another pair of trainers which is normally a joy for him but he refuses this too. He is getting anxious now. This one I am insistent with though because he needs white bottom ones to go in the sports hall and though he can’t see the point he agrees, finally, to this and he agrees also to a few tops, a long sleeve one, and a couple of other things and so off we go, finally, after about an hour of negotiating. Job done! An hour of difficult cajoling later and we have managed one pair of shoes and I have given up. I will just have to manage the rest with what he’s got. This is Sunday and he goes tomorrow morning, don’t push it.
Later that day he announces that he WILL be taking his bag of ‘shiny things’; his coin collection, fountain pens, ornaments and crystals, mostly given to him by his family, but we have to say NO. If he took this bag then the whole week would revolve around it and I will guarantee there will be several incidents involving these ‘shiny things’. As I have said before they will stress him out. If he went to a special school then it could be managed but his school is a mainstream one; where he wants to be and where he sees himself but where we have to try and encourage him to adapt because his Autism is not paramount in the school. Not easy but this is becoming common because T has high functioning Autism and so sees himself, as others do too, in a mainstream setting but still has quite specific and generic autistic characteristics. And I’m not sure the school fully understand this fixation anyway. The evidence of this is the teacher who gave him a ‘shiny’ rock just this Friday. There were a lot of tears about this over the weekend and I had to phone the school and explain (this is not the first time), that it is important not to encourage this as it is not helping his development. Anyway there was another hour of screaming but one that did stop eventually. I should have realised then that something was up but I thought he had accepted our decision and moved on.
The next morning, the day of the trip, starts really well. He is up early, happy and excited. Just like all kids are on the day of their school trip. Nervous but happy! But as soon as the taxi arrives to take him he goes and gets his bag of ‘shiny things’ and so begins an hour of screaming and yelling. He’s yelling at us that he needs the bag because they are “memories of his family and how would I feel if I did not live with my family”. He has a point and I consider letting him take them but I stop myself and think about what it will be like on the trip. This little battle could stop a war I think. After an hour though he strikes up a deal because it is getting late he does want to go. He will take one ‘shiny thing’, something we suggested a while ago, and then he will happily go. Brilliant, so we get his bag and he chooses the ‘shiny’ rock that came from the school on Friday, not a gift from his Mum, but the last one he got, his new obsession. Arghhh! But we got him on the coach and off he went.
It is nice when he’s away, that’s not to be mean, but he does dominate the household and so when he is away we can take some time out to relax and to think, to remind ourselves why we do it, and, to be honest, to forget that we do it too. We love him being here but we also recognise the importance of not forgetting our own family too.
The phone call came on Wednesday, the same day as last year, and it’s from the head teacher so it does not bode well. She told me he had been struggling with the week and that they were worried about him. He was having problems getting ready for activities and then also becoming quite defiant and ‘naughty’ after an activity. They told me that the rest was fine though but could I help. That was a nice surprise as it was not an information phone call telling me that his behaviour was really bad and that if he didn’t buck up he was coming home which I was expecting. No they wanted help, excellent, and so I spoke about transition, that they needed to give him more detail of what he was going to do on the activity, ideally visually, so he was not worried and that when he came back you had to give him time to adjust so don’t ask him to do something straight away. Give him some time and if possible get him his book because that is the best thing to calm him. I did wonder that these are not uncommon traits in Autistic people and shouldn’t the school know this but then I did also think that I have had him living with me for a year and a half now and in that time I have been on a crash course in understanding Autism so that maybe I did know a bit about the subject too myself so maybe I should share. At this point I decided that I would create a fact sheet on T’s Autism so that others, especially his new school, could start to understand him better.
He had a good week in the end. When I picked him up I spoke to the Head Teacher and she was much happier about the week and T’s part in it. I don’t know if what I said helped because she did not say but I know I personally learnt plenty, even though it was my week off.
As an after-thought it was a tough weekend after his return too but one I learnt more about T and why he may find transitions difficult. All weekend he was pushing the boundaries and all weekend we had to reassert them but by Monday he was back to his normal self. I don’t know why it was tough over the weekend but I did wonder whether his difficulty with transition periods had something to do with it. When he leaves one place he forgets what that was like to accommodate the new place he is staying at and so when he returns he has to re-push the boundaries and find out where they are. He needs to therefore re-accommodate himself, because he has forgotten the boundaries; forgotten in part where he came from. I might be wrong but it certainly helps me understand the huge task this young man has in his life to do what we find very natural.