Monthly Archives: July 2015

Inspiring parents and inspiring skies

Day 12

We started with Hannah in my sandals claiming she was ‘fine’ though inspection of her heels proved otherwise. Clearly application of multiple plasters and small train trip to halve the mileage was going to be sensible. We were off, disgustingly cheerful with 5 miles to go into Kings Lynn for the first appointment. The views along the river were beautiful, the sun was shining and the company was great.

As we approached Kings Lynn we were falling behind and there were some extra miles to cross the town I had not factored in. A swift phone call to Paul and the problem was solved, we were collected and conveyed in great style to meet his wife and son Harry. I noticed a plastic folder of photos in the car and a series of visual timetables that covered the everyday stuff of life. This family were using the photos and pictures every day, and as Paul said, ‘ it works.  My boy is non-verbal and he works visually.  We do it because it means he understands’.

day1512aPaul, and Andrea were so welcoming we were given tea and toast, Harry clamped his hands over his ears on seeing us but continued to play incy wincy spider with his Mum loving the tickle finale.

We looked at the pictures and timetables and talked through how Harry went to look for the iPad symbol in his PECS book when Dad hid it. Like many families they don’t want Harry spending 6 weeks with his eyes glued to a screen .

We talked through how a simple timetable that showed him where the iPad would be available in the day would help reduce his frustration for he thinks he just needs to ask more often bringing the iPad lead, or taking Mum to where he expects it to be kept. It will take some time for him to realise it is for limited times at certain times of the day but the holidays is a good time to practice and there is a huge willingness to try.

Harry is a placid cheerful child most of the time but recently has been agitated and aggressive, lashing out, throwing tantrums and hair pulling. There has been a great deal of thought given to why this is happening but of course it is only guessing albeit that Paul and Andrea are very good guessers as they know their son so well.  We thought about what had worked in the past when there were bad patches, for what worked then in helping Harry through is likely to work again. In the past regular movement breaks, exercise, Intensive Interaction therapy session and attention autism activities have worked well. Time to add these back regularly across Harry’s day to see if shared good times can help him find his equilibrium once again. The time went so fast, these parents taught us so much. Thank you Paul and Andrea.

It was time to wave Hannah and Laura off to catch the train back home and I shall miss their insights and honesty let alone the humour and readiness to laugh!  The children are lucky to have them as teachers.

Paul took me to the next meet up point and encounter we talked about his role as a governor in his sons school. This very active involvement in education is a part of his determination that children get the help they need. Parents have so much to manage every day to add this takes courage and makes a big difference to others.

I met Laura no her two some exploring a church to fill in the time whilst they waited for me. We drove home with William the 2 year old keeping up a constant stream of appeals …’Gina … Mum … Gina …, not with anything particular to say but just for the interaction it gained. Harry sat quietly hood up occasionally contributing a comment.

We had a carpet picnic and gradually Harry became positively chatty, there was a great deal of passing on of cheesy biscuits as he worked out how to get everybody to have one even if it did mean yours disappeared to reappear reallocated! Harry talks and he is interested in interaction it just seems he can’t keep all the balls in the air at he same time interaction+ words+ meaning. There was always some kind of link between what he said and what was happening or his thoughts at the time but it came in learnt chunks of echolalia. This has of course been so confusing for everyone, apart from his younger brother William who just carries on regardless.

day1512bWe talked and tried out some ways to use Harry’s ability to learn chunks of language and to plant the ones that work in this everyday world, how to keep the conversation on track and how to accept and respond to the willingness to communicate whilst gently keeping the words relevant. Louise is an astonishing parent, confused yes, upset yes but determined and so open to ideas given in practical situations with her boys. Intervention needs to work in her everyday life as William will join in too!

Thank you for a picnic that was fun, interesting and yes perhaps a little quirky but it was also kind and loving.

Louise and the boys dropped me off on the peddars way and the afternoons walking began.
It is a beautiful walk, wide paths scenery that takes the breathe away and for at least a couple of hours cloud formations that really made me think about the whole big sky concept.

Then it started to rain and my thinking became more pragmatic — walk, walk, walk, FINISH. The new waterproof was thoroughly tested, it mostly works but I arrived in Hunstanton youth hostel cold, knackered and ready to sit down!


Maybe is is possible to take this exercise concept too far,  we will see how the legs are in the morning!

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!