Walking with teachers and parents stories

Day 11

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!

day1511aI had time to visit Ely cathedral and look at the painted ceiling which is astonishing

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.

day1511cWe 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.

day1511bDad 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.

day1511dHere are the handsome boys going for it in their gym balls – occupational therapy advice being followed through in daily living. Brilliant

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!

RAIN and soggy versus happy welcomes

Day 10

It all started so well, with the disco definitely over and the sun shining. We were optimistic enough to be able to ignore the fact that neither the hot or cold taps in the sink yielded water, of any temperature and that the floor to breakfast was audibly tacky! We set off cheerful and confident then had to back track a bit as we were on the wrong side of the river and ran out of path. Everything was pretty soggy and we noticed and astonishing number of huge black slugs, I must remember to look up and find out more about them.

day1510a

The scenery is huge, yes flat and very different from the Surrey hills where I live but the views go for miles, the fields are filled with potatoes and wheat (maybe barley?) and the walking is easy.  We passed a small wind farm and discussed the opposing views, we passed barges and boats and we wondered about mooring and maintenance and generally it was all going very well. We found a small village shop and bought food for lunch and then the views disappeared and the rain came down. We ate cold pork pie and decided the tuna fish and cucumber sandwich was a mistake and moved on to chocolate …

Walking along the hundred foot wash we had to use the road as the footpath was impassable and kept having to jump into the ditch as cars rushed past at speed. The afternoon wore on and the rain continued. There was no question of giving up , we had to be in Ely by 4 to meet a group of parents but the company definitely kept the spirits up. What may have seemed meaningless jokes and nonsense to others kept Tom and I amused for the last couple of hours as we steadily got wetter and colder.

day1510bWe found the bed and breakfast booked for the night and stood ringing the bell. When the door opened the hostess looked absolutely appalled and we noticed the cream carpet, white walls and narrow hall lined with fragile ornaments. It was clear we were not quite what was expected.

I explained that really it was only me staying but could we change into dry clothes before a meeting. We were invited to remove our boots and socks before entering, which was reasonable enough but in a small space with hands and fingers numb it takes ages and we had to carefully avoid catching each other’s eye or helpless giggles would have ensued. The air of disapproval was profound, I wiped a muddy scuff mark off the wall with my wet sleeve so fast I hoped she thought she was seeing things and held my breath as Tom turned narrowly missing china ladies with his rucksack.  We were given green towels to use and asked not to use the white ones in the room and then we were in.  Everything in the room was also white…how stressful but elegant!

5 minutes later we were out and arrived to meet parents at the Old Dispensary where the welcome was a striking contrast. Hot drinks, biscuits, chairs and huge smiles and our spirits lifted once more. Tom took off to catch the train back to London, his company has been amazing and I relish the fact that the bed and breakfast lady probably thinks I have a toy boy!

The group was made up of staff from the local special school, speech and language therapists, parents, a music therapist, someone who works with children on the spectrum at home and a couple of gentleman who were driving. The conversation and discussions were open and fascinating.  We thought through chunking up the holidays into bite sized portions, adding drawn timetables to give structure, coping with adding movement breaks into persistent iPad use and drawing the number of sleeps as a series of beds to show time passing.  Of course it is easy to give advice, it is putting it into place that is so much harder but the opportunity to hear the realities of living with autism, to discuss ways forward that each family can adjust makes good sense and I am learning a lot.

There is a movement afoot to start an autism hub in Ely that focuses on getting practical support and useful information to parents early and quickly. It was great to have the speech therapy service there keen to join and to think through how such a hub might be able to provide a space for intensive groups in the holidays to support parents and their children in developing communication. I feel very fortunate that so many people gave up their Sunday afternoon to meet me and share ideas. Thank you it has given me so much to think about. By 6.30 we had to leave but with all hands on deck the room was cleared and the next booking for the hall could pile in.

day1510c

I was invited to supper with Rachel whose motivation and interest had pulled the previous meeting together and got it organised quickly and at the end of term. No mean feat! I was hesitantly offered a lift, the concern being that I might feel I was cheating by not walking, honestly a car never seemed more attractive and I am not proud! We arrived at Rachel’s house where her husband had valiantly been barbecuing in the rain and sat down to a delicious meal and more conversation.

Rachel’s brother Joe has autism, he understands a lot but does not speak spontaneously. He has an additional diagnosis of verbal dyspraxia and the deep concern to get him talking was tangible. This reflects our urgent and fundamental drive to communicate and share interaction, it doesn’t go away and it is so confusing to find different attitudes to oral motor programmes and work on articulation.  Such programmes are available and the hope is that if they were accessed and intensively applied that spontaneous social communication with speech would follow.

We thought about using intensive interaction therapy to build the fundamentals of communication and shared interaction, how to reduce direct questions as dependence on prompting is a major issue for Joe, how to increase modelling and how to fill his day with practical tasks that give him pride in his achievements and something to communicate about. We covered a great deal of ground and much of the message was extremely difficult, there is no quick fix to this problem and the way forward is going to require a lot of work over time. Joe has an incredibly supportive family but this doesn’t mean that it’s easy. All the while Joe sat with us at the table, ate a second tea, and behaved beautifully. What a good boy, he is much loved and approved by his family. Thank you for welcoming me to your home Rachel.

I returned to the bed and breakfast eyeing up my boots by the door, still soaking wet but felt I had to abandon them to their fate. A hot bath and a long soak followed. It has been such an interesting day, there is so much to think through…at 11 pm I decided that on balance it was reasonable to think an offer to dry the boots would have been forthcoming but as it clearly wasn’t it would be OK for me to put them on the towel rail in the bathroom. I sneaked downstairs once more, leapt out of my skin to find someone else also creeping about with boots only to find it was my own reflection in a mirrored wall and carried my boots aloft. It took only 5 minutes to rinse off the worst evidence of the day, line the heater with strips of loo paper and balance the boots in the perfect position to dry.  It took a further 30 minutes to wash away all evidence of mud, splashes, excessive use of small sink etc!

And tomorrow?

More rain is forecast I think I will have to buy a new waterproof and will dream of essential features for packamacs …