Sunday in the sunshine

Day 17

It is fascinating watching places wake up, the hotel I stayed in does this slowly. The breakfast room was locked till 8 am so a few of us hung around the empty lobby pretending we weren’t waiting. Service at breakfast was interesting, a huge room and one waiter who took one order at a time, walked to the far end disappeared into the kitchen then walked the length of the room again to ask the next table if they were ready to order and so on . There were 4 of us all sitting at the far end, where he had seated us. Tea and toast was delivered in the same sequence followed by repeats of the routine with cooked food. Time and motions would have a fit!

I walked out of Cromer and on to Felbrigg Hall and through the National Trust grounds on Weavers Way.

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The route led through fields and small villages, a helpful dog walker pointed out deer hiding in long grass and a birdwatchers showed me a heron camouflaged in reeds. There are just so many interesting things to see if only you have time and helpful folk. It is so easy to say hello, and stop for a brief chat when on foot, there just seems to be more space to do such things in the day.

day1517bI realise how lucky I am, I can plan my day and break my overall journey into chunks. I know where the start and finish will be each day and when the whole journey will end. This is much harder for parents of autistic children, the plan will have to be different and the overall journey can seem uncertain much of the time.

As professionals we break our involvement into chunks with clearly defined boundaries and conclusions, it makes us feel good, but this is not possible for parents. Their child’s development needs encouragement and support day on day over a lifetime, is the model we use as professionals effective?

So many thoughts today, in particular how a rethink of how we work is needed, someone has moved the cheese!

day1517cThere have been some interesting front garden ornaments to distract me and a the sign of the day goes to this one — did you know cars had challenging behaviour?

I walked through a second National Trust estate, what lovely loos they have and then onward towards Aylsham. I watched parents struggle to get their 2 children to wear sun hats, they put them on and the children swiftly threw them off. Explanations, reasoning, bribery and threats followed, the application of the whole parental toolkit. I thought of the struggles we often have to get children with autism to wear sun hats, we could start by obviously wearing one ourselves, invent games that involve the children putting hats on us as adults and swift tries for them, pictures showing hats on in the sunshine then off in the car or house. It is going to take time!

I continued walking, missing the way and ending up a mile off route so had to go back. By 6 o’clock I was begging to flag but knew I was on the last mile. I came across a young teenager sobbing under the railway bridge and stopped to talk. She was so upset after a row with her parents but she was sure she was safe and not frightened just needed to calm down before going home.. I left her calling a friend on her mobile for some more age appropriate moral support. Oh crikey it is so hard to see children crying and adolescence is such a confusing time.

I found my bed and breakfast and was welcomed by a huge black dog that leant against me. I didn’t mind that too much but when he started to lick my legs I was less keen! My room has a four poster bed in it, frame only, nearly screwed together at the critical joints and gently leaning overall on the central light fitting.  The mattress has an interesting tilt with significant dips and lumps but I have eaten 2 packets of cornflakes with fresh chilled milk and life is good!

Parental resourcefulness and fish and chips

Day 16

The day started slowly. Yesterday evening ended late in walker terms at 10.30. The theatre was small with the actors and a mass of stage props feet way from our laps. We watched as the actors acted away like mad, what a lot of words, a couple of good frocks and a lot of hand ringing melodrama. It took them a very long time to work out who killed who but once you get over the fact that the clock was ticking unbelievably loudly compared to doors that resolutely refused to slam, it was great entertainment.

The first meet up was in Tesco’s car park and was achieved with only one call…maybe the rucksack gives me away. I met Annie and 2 of her children and we decide to relocate to Sherringham Park so we could talk whilst the children had lots of space to race around in. The park is huge and an incomplete project for a famous garden designer whose patron unhelpfully died before it was completed!

We headed through the amazing grounds to the ‘tower’, Annie’s daughter and son ran ahead, climbed trees, hid in bushes and carried sticks leaving us free to talk. Such fluent and creative play is a wonderful thing to observe, they were so busy and engaged. Annie’s 3rd child has a chromosome disorder which results in autism spectrum disorders in a large number of the individuals. Annie is both an experienced parent and childminder, she knew from early on that something was different about Zacky but the road to diagnosis has been long , protracted and frustrating. It seems many had the same concerns but getting the label was a real problem.

I asked Annie why she wanted the diagnosis and she was clear that it opens doors to resources and she knew her son would need support in school. Zacky wasn’t with us as he was away but Annie had lots of photos and knew her son so well that stories told with love gave a clear picture of a child confused about communication, interaction, flexible thinking and some sensory processing.  We decided after a while that there were 2 parts to the problem of meeting his needs that Annie had to use her energy for, one was the battling to get the process of diagnosis converted into a planned support for school, and the other was for the practical interventions that can be tackled in the holidays to build skills for school which starts in September.  We thought through how to hold on to precious reserves and take a steady clear approach to the processes of administration so as not to waste energy on systems that are not designed to be quick. This is so frustrating for parents and can consume energy, time and escalate anxiety.

We thought through how to help Zavky with sitting at the table as this will be expected for school dinners, how to tackle independent dressing, how we could let Zacky know that computer time will finish and how to remind him to wear a seat belt. We thought through a plan for meals, practised drawing a visual timetable and the simple script that would go with it. We agreed that 6 spoonfuls of main course then pudding then get down would work and that if we aimed for 5 minutes sitting that would be realistic. Annie and both her children had a go at drawing a visual timetable.

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Now it is a question of doing it every lunch and dinner time through the holidays to build in the confidence that comes with practice. There will need to be adjustments but once it has started we can tweak and individualise the set up. It helps children so much to practice some of the skills a that are taken for granted in school so that when the time comes there is not a whole mass of skills needed from day one that all need to be taught and learnt fast.

We thought about, and tried backward chaining as a strategy for getting a bit more engagement in dressing and practised getting my socks on. It is so easy to work with a family when they are prepared to try it out straight away! There are of course concerns about ,will mainstream work, will they understand. What will the other parents say? We prepared a simple outline of what Zacky likes and what he doesn’t for the staff and then a brief introduction to Zacky for the other parents . There is no guarantee but we can shift the odds, give it an optimistic shot and direct energy into the preparation.

By this time we had been up and down the tower twice and everyone had raced round for 2 hours so it was time to go.

I was given a delicious packed lunch, dropped back into Cromer and we said goodbye. Annie has been very successful in accessing some practical support that makes days out and holidays possible and I realise there is information out there it is just difficult to find. How can this be in an age where everything is meant to be n the Internet? Anyway I will post it on Facebook and am certain that once parents get hold of it it will circulate like mad!

I walked through crowds out in the sunshine perusing the shops in Sheringham and gradually worked my way out on to the coastal path. I lunched on a picnic fit for the queen in bright sunshine looking over the coast. It doesn’t get much better than that on a Saturday.

The coastal path weaves inwards through woodlands and then out towards Cromer. Camping and caravan is is big round here and what an astonishing array of vans and tents there are.

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I began a new strategy for estimating family size based on caravan + car make + additional tentage and style of camper chairs. An interesting formula that needs further work for there are those that break out washing lines attached to the caravans and those that bring whirligig airers with them which of course takes laundry to a whole new level.

I walked into Cromer, the sun was and the beach was busy with families holidaying clutching the buckets, spades, picnics and windbreaks, some in swimming costumes and some fully clothed with jackets on.  Another formula needed for individual responses demonstrated by clothing for weather conditions!