So much has happened this week I really am not sure how to get to grips with it. The holidays are always demanding but the last few days have been physically shattering.The same old issues come back time and again to haunt us as parents of children with disability.
First up was the issue of siblings and not being able to spend any quality time with them. I have been regularly taking Andy swimming in recent weeks. We have our routines and contingency plans that have just become the norm. Each trip usually has ups and downs that I have learned to cope with constructively but when Helen, my 7 year old daughter asked to come along, she was not expecting the unexpected I guess. We all did two trips over two days and the first one went well reasonably I suppose. The second one saw Andy becoming upset in the pool almost instantly and for no apparent reason. He kept leaving the pool and returning to the changing room. I had to follow him each time and wee Helen had to follow me. This happened 3 or 4 times and eventually Andy refused to come out of the changing area and wanted to play with water in the wash hand basin. Helen was upset – “but I never got to swim dad!” ” Well I told you this could happen before we came,” replied ‘dad of the year.’
I came up with a sort of compromise where I sat at the side of the pool watching Helen swim while checking on Andy every minute or so. Not great but the best I could offer! Helen asked if we could go swimming together while Andy is away at respite. I promised we would.
Andy had a few days at respite planned during the week and we approached it by preparing him with pictures of the unit and talking to him about it. He seemed animated and happy even though the young woman who came to pick him up had never set eyes on him before. He did know the volunteer driver however and so we went ahead as planned even though we had recently raised the issue of the importance of continuity and planning in relation to kids with autism with the service provider.
Let me let you into a secret- although we are happy and smiley when Andy goes away we are both affected deeply by guilt, worry and grief. If you have never been in the situation consider letting your young, vulnerable, non verbal child go away with a stranger. The unit is a considerable distance away. The guilt and worry usually starts just as the car disappears along the road. As I have said before we find that keeping busy and using the time constructively helps. We had a full itinerary of activities planned with Helen and David , who were both excited about the ‘holidays.’
We had arranged to spend a couple of nights in Glasgow at my sister’s home and had planned some activities around the city. That evening in Glasgow we were expecting an update call from the respite unit as is our norm but it never happened. When we tried to call the respite unit there was continuously a line busy message. This went on all night and the later it got the more concerned and anxious we became. We left messages on mobiles and emails to everyone we thought might be able to help while we reassured ourselves that he was fine. The anxiety spoiled our night and sleep however and I was up early next day pursuing things. Without going into major detail it was not till almost midday the next day that we heard from the respite unit. I had spent the morning and then a fair bit of the afternoon on the issue and communicating with various service managers. One of whom thought it was appropriate to have the conversation on a mobile while driving. The reception was terrible and she was cut off during it as she pled her deep regret and determination to investigate. Another kick in the teeth for the neurotic carer!
After teasing out much of the hidden detail of Andy’s stay from one of the carer’s I made the decision to let his respite continue. It is to his credit that he was coping so well with the extra challenges he faced through lack of routine and familiarity but playing fast and loose with the needs of a child with ASD is just not on.
The next couple of days saw Helen and David get their “money’s worth” out of their parents and I am now returning to work feeling low and tired. Sadly the few days “break” have been exhausting on so many levels.