The day started early as the rain lashed down and I began to think of another day of wet weather. Breakfast was not available till 8 so I spent some time making sure there was no hint of the previous evenings ablutions before deciding that cheery innocence was the way to go. I was greeted at the breakfast table, radio 3 playing marching music discreetly in the background, by my hostess who enquired if I was ‘dry now?’, civilised question that seemed to cause her pain. I smiled happily and said yes thank you. She then enquired.’and the young man with you?’ I sighed wistfully and whispered yes gazing into the distance — before I ploughed through the cereal. Small victory to me I think as I could hear her trying to work out how she could find out more!
I walked on to the station where I met my walking companions for the day, Hannah and Laura. Both are teachers working in special needs and both have children with autism in their classes. Hannah has been working in a pre-school children’s centre and Laura with secondary aged children in Barnes.
It is interesting to hear the views of these intelligent and passionate young people, how practical intervention is stymied sometimes by the burden of process but how a good team supported from the top makes a massive difference. Hannah and Laura walked and talked as we navigated the river, it was windy but dry and the necessary chunks of road walking passed safely. 12 miles in blisters were becoming a problem and as Hannah is getting married next week we felt we shouldn’t ruin her feet. A compromise was needed so we side tracked into Southery and begged a lift from our first visit of the afternoon.
We were collected in a bright orange mini — well if you are going to compromise its best to do it in style! We arrived to be greeted by Claire, Harry, his teacher and his brother Oliver. We were made welcome given tea and freshly made lemon drizzle cake, with each cupboard being opened at just the right time with a special device/key that was then swiftly stored in an apron pocket.
This Mum and Dad have worked out an amazingly complex set of strategies that keep their son Harry safe and able to live at home but it is complicated, a constant act of vigilance and anticipation and chronic sleep deprivation is a serious problem. The family is grateful for the very limited hard won respite they have but this family is exhausted and the long summer holidays has just begun. These parents did not complain they got on with it determined to do the best for their son. We discussed sleep, the importance of sleep in making it possible to continue to care for Harry. When one or both parents finally runs out of reserves the whole family structure is at risk.
They are going to start by gradually reducing the light in Harry’s room at night time and mum is going to consider sleeping for parts of the day when Harry is at school, she is after all working the equivalent of night shifts. A full sleep programme is needed but parents need to get their own sleep tank topped up before that becomes practical. We also discussed problems finding clothes that Harry will wear and how we can gradually work on desensitising him by getting him to handle fabric, loading and unloading the washing machine, fetching clothes off the line and distributing clothes to the right people. The school immediately agreed to follow up with fabric matching tasks , sorting lost property, small jobs returning clothes to their owners etc. this is fantastic.
We also touched on siblings and the complexities of fairness and how to tackle issues when siblings try to shoulder the responsibility. These parents are creating a good life for their older son Oliver, he is a flourishing , a fast and highly successful cart driver — only 4 races away from wining the British Championships in his age group. You would not believe how many trophies he has. He kindly allowed me to have a photo taken with him — my brush with fame for today!
Harry’s Dad drove us on to our next visit where Evan had carefully arranged a plate of sweets for us in the kitchen next to a tank containing three giant African land snails. Now there is an unusual pet that needs a second look! Jo suggested that apparently one sliding up your leg would act as a mollusc style leg wax. We thought Hannah should volunteer so she would be bride ready next week but she wasn’t keen.
Dad generously occupied Evan and his younger Matthew so we could talk without strategies being overheard and anxieties being raised. Matthew is currently in mainstream but the gap is widening and specialist resources need to be continually checked so the school gets the support it needs.
Occupational therapy can only be accessed privately but speech therapy is in place. We talked about how the difficulties of persuading a school to intervene proactively with learning breaks to avoid the end of the day meltdowns and how to ensure ‘coping’ at school is not accepted as the measure of success. This is the second time this has come up and reminds us that we are not successfully getting the message out about the daily cost to a child of managing to keep a lid on it in school only to fall apart at home.
For Evan the difficulties are around the mistakes that occur because he is so innocent of how his interactions may be interpreted. We discussed private behaviour for private places but more than that describing what private means, what exactly private parts are and what the rules are. Jo and her husband will follow through and Evan will benefit, it is just hard to know how to do this when other children just seem to get the idea. Once a good basic strategy is in place parents can add information as it becomes necessary.
We were given a lift into the town right to the door of the bed and breakfast where we were welcomed shown our rooms up a flight of stairs with a fearsomely patterned carpet, but clean beds and hot showers, hooray!
Over supper the 3 of us talked about quality of life for some families, the incredible but not bottomless pit of energy parents have and the huge disparity in resources available across the UK. We also recognised that the insight visiting families in their own home brings and how lucky we have been to have this chance.
Forecast for tomorrow?
Rain, but I am the proud owner of a new jacket that is true to its impressive set of 4 labels — waterproof!