Author Archives: gina

Lucky for some, including me!

Day 13

The day started with sunshine streaming through the window which made it much easier to overlook the still damp rucksack, I have lost its waterproof cover somewhere along the way.

I couldn’t bring myself to put on my wet boots but as the first visit was only 10 minutes away I went in sandals and parked my boots in the sunshine hoping they would steam gently. On the first visit we tackled the practical difficulties of discussing meltdowns with a teenager who is reluctant to take part but wants to be present.   Of course this is completely understandable, I am a stranger, but any discussions must be considerate and respectful of those concerned as not speaking does not mean not participating. We also thought a bit about how anxiety can wipe out sensible thought and override any carefully laid plans. A longed for kitten had finally arrived but it’s random if playful movements were causing high anxiety.  Oh the difference between the dream and the reality can make life very difficult and this kitten just had no chance of being slow until it was tired or old!

A small sneaky bus ride half way to the next meet up was needed as the mileage and the time available just didn’t match. There was no bus timetable or useful visual support but 2 helpful ladies filled me in on where to go, how much it would cost, estimated time of arrival and onward route. They saw me onto the bus and waved me off! These small acts of kindness go a long way.

day1513aI was about ready to start eating my rucksack having left before breakfast when I came across a small village shop in a portacabin.

The owner was on hand to sort any problem that came his way, where to get the parish newsletter printed cheaply, what days the bins should go out and how to get tea from his machine.

Whilst my breakfast wasn’t quite what I anticipated and pork pies can be a bit heavy on the digestion it was eaten under his eagle eye with obvious appreciation!

I was met by Holly outside The Ship having discovered that our agreed meet up point was 2 miles in Brancaster in loose geographical terms rather than specifics but Google maps just wouldn’t play ball.  The mobile signal here in Norfolk is interesting, it is apparently working UK wide coverage but in practice seems a little whimsical!

day1513bA shared lunch with the Starfish Plus team was fantastic, the conversation was open, challenging and one of the most constructive debates I have had for years with a multidisciplinary team. We were able to laugh together, share stories, successes and the tougher bits. This photo says it all, a hard working passionate team that loves and enjoys their job.

Mel who initiated this very practical service that offers direct support and intervention over time believes the model can be duplicated. We need to hear more about services like this, they are working and held in very high regard by the parents. This team works with parents at home to build strategies that work for that individual within their family. They turn up and they do it. I wish we had a team like this in every county.

We were joined by 2 mums and their sons and moved outside to give the lads a bit more space and simply continued talking adding the parent story to our discussions. The 2 boys self occupied with occasional well timed intervention from their mums. It is rare to see such high quality intensive interaction therapy and proactive calming strategies being used without fanfare just integrated into how the social situation ran. It is amazing and inspiring.

Quote of the day goes to Harry’s Mum:
Non verbal has no correlation with quiet.  Helen Giles July 2015

I am putting that one in my next presentation, thank you Helen!

Ciaran and his Mum are now able to go to classical concerts together and enjoy the music from start to finish. His mum pointed out that they always sit in the back row as Ciaran conducts (of course, why not!) and she laughed but this shared joy is a powerful thing.

Eventually I said goodbye and walked on. There is so much I have learnt today and it is great to talk to inspiring people, laugh long and loud together. There is so much here we want for all our families. How can I make sure I weave this thinking into what I do?

The scenery in filtered sunshine was glorious. Wide open beaches, miles of sand on one side, dunes and fields in the other. Today has been a great day, I am lucky to have the chance to do this.

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Also the B and B has a heated towel rail so dry clothes tomorrow — life doesn’t get much better!

 

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!

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