Daily Archives: July 19, 2015

Curiosities and parental courage

Day 2

Today I woke thinking of the difficulty Steve and Jo expressed yesterday when a professional visiting used the term ‘-abled autistic’ , it’s not one I have heard before and as Jo said  what does that mean for us and our son — ‘disabled autistic’ .  How can this be a useful descriptor and is it an improvement of high/low functioning which is hideous too to be fair. Perhaps autistic covers it in truth and we should keep it simple. Interestingly these incredibly sleep deprived parents living at full stretch didn’t raise it with the professional as they didn’t want to upset her. Parents are incredibly forgiving of the things we say as professionals.

The other confusing thought was Jaclyn who had been told the Isabelle didn’t need speech and language therapy as her difficulties were as a result of her autism.  WHAT?  Words — or at least acceptable ones fail me.

Once up and out I visited the cathedral meeting a chatty Irish lady en-route so we covered places we had visited their year, the Celtic Tiger and the crash compared to Greece and cathedral etiquette, all in half an hour. Honestly walking does allow you to meet such interesting people and we shared some time watching the sun stream in through the stained glass window with only 2 other people in the whole building. This recently met friend gave me a huge hug as we parted and I felt lucky to have met her.

I walked along the river and out of Lincoln reading signs about how trains replaced the horse drawn barges whilst leaping periodically into the ditch to let Lycra clad men whizz past on impressively skinny bikes — no functional use of bells or pre-encounter hollers I note!

Arriving in Branston I began to stroll up the drive of a very swish hotel feeling slightly uncomfortable about my attire but was saved from possible rejection by meeting Melissa before the impressive turning circle in front of reception.  We decanted to a quiet pub and I day1502aheard her story. A tricky one, that has ended up with her 6 year old refusing school, experiencing almost constant extreme anxiety and hyper controlling behaviour.

It would seem PDA is not recognised so this small boy has an impressive list of diagnoses but in reality the situation is extreme, quality of life for the whole family is crashing and Mum’s reserves are very low — and now EHC meetings must be attended, reports read and corrected, notes sent as professionals within the group don’t seem to have copies of the reports — and there is no practical help in place.

We discussed mood lifters to try and build in some times each day to tackle the overwhelming feelings of unhappiness this little boy feels, offering choices and creating options, using scripts to state the important rules and heading off confrontations, thinking out loud about the rules as they apply to the adults and respecting the needs of siblings. This Mum made me laugh, she saw the funny side of things, what astonishing courage she has. We need to remember parents don’t have a limitless bank of energy and coping. The administration wheels move so slowly and a crises is becoming a chronic situation. A year on and still there is no easily accessible course and practical advice for parents of children with PDA or whatever you are allowed to call it. Thank you Melissa I learned a lot from you today.

day1502bWalking onward the path varied from discreet footpaths that cut through farms, travelled down the side of gardens, wove through new housing estates with long stretches across fields with ripening wheat and crops that rustled and swirled around me like a rumour in an over excited crowd. It all turned out to be a little further than I thought–map measuring still in ‘working towards’ phase but I think I only added a mile or so as a bonus ending up on the wrong side of a drainage ditch and having to retrace my steps.

The footpath is called the Spires and Steeples way and it does take you past each small village church, sadly all locked and a distinct lack of ice cream purchasing opportunities.

On one path I saw the first wild hare I have ever seen. They are so much bigger than I had realised and the run rather than hop. I was amazed. I also saw a sword in a stone — why not have one in your front garden?

Or perhaps a cow made of spanners and machine parts if you want to try something more rural.

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As time wore on it was clear path gravel needed a new grading system:

  • Grade 1. Finely irritating
  • Grade 2. Limp inducing
  • Grade 3. Ankle breaker

Why is it the ankle breaker is on the last 2 mile stretch of the day when legs are getting tired — certainly matches the discomfort of ‘old Roman road’ surface challenges.

I was collected from the pub by Helen who careered up cheerfully in her land rover and filled me in on pony club assessments first grade as we drove to her bed and breakfast. I was greeted by a dog with one blue eye and one brown one — full vision in both I am assured, and installed myself with a view across open country from my room window.

Walking across the floor to the shower after sitting down for a bit is now a serious challenge but access to the rucksack for the emergency KitKat is essential.

Transitions and shared laughter

Day 1

Today started with that kind of fizzy excitement that makes you grin and walk fast so I got to the station in time to catch an earlier train into London — sailing into a seat in first class thanks to the ticket man pointing out it was the cheapest ticket available. With 3/4 hr to spare I stood and stared at the remarkable statue outside the British Library — it seemed so apt as downloading maps and conquering their GPS use will feature large for me in the next few days.

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I went in to the library and had time to see their Room of Treasures, such beautiful illuminated books through to letters from the battlefield in Waterloo.

The onward journey to Peterborough started so well with an allocated seat and menu for a free lunch–but no carriage E had been removed so seats in carriage M were now to be read as carriage L and seat numbers as per ticket slotted into the seat NOT as noted above the seats — whaaaaat! Absolute chaos followed and oh how the repeated instructions over the tannoy made us laugh as they we were all lost after the first sentence and stopped even pretending that we were listening. Oh for a visual timetable — the poor steward resorted to telling everyone individually — that rung some bells! Oh for a visual timetable!

I nearly missed the station at Peterborough exploding out of the carriage having hauled the ‘automatic’ doors open at the last minute and stood shaky and anxious on the platform unable to read my timetable because I couldn’t find my glasses, fretting about platforms and clutching my belongings obsessively. I was so surprised at how fast I went from feeling cheerfully excited to rabbit in the headlights. Such crashes of confidence are so much a part of some ASD children’s days and I could ask for help and readjust using strategies practised over a life time. It still took time and energy. It was a salutary reminder of how unpleasant it is an how fluent use of coping strategies need to be built in to everyday use.

After arriving in Lincoln I set of following the river to my first visit and within 20 minutes was surrounded by bird song and fields. I struggled to find the first house as odd numbers down one side evens down the other and number 20 hidden round the bend. Thank goodness for helpful Mum’s waving from windows and welcoming me a bit hot and sweaty with a cup of tea. Isabella had arranged her collection of small figures carefully in a curved line that allowed the door to close and allowed me to admire them. She then responded to one trying to fly with peals of laughter and figures sitting on the sideboard being nudged over the edge with helpless giggles and we were off.

Isabella has learnt many scripts and chunks of language that she uses during play but has such difficulty understanding . She goes to a mainstream school, that has bent over backwards to make the experience fruitful and now at the end of the year Iday1501bsabella is trying some school diners and enjoys school, transitioning to a new class is causing her real anxiety but the school has arranged a day when she can go in with her Mum and Teaching Assistant just before the end of term. This is a fantastic opportunity for mum to take photos and make a little film narrating the way round the school from the new classroom for Isabella to watch. We also talked about using the language of comment and observation to try and reduce the pressure on answering questions. Isabella’s Mum is an amazing lady so very on it and ready to try. Mum combined with the resilience that such ready laughter wins and a school that is committed to making it work is such good news.

I walked on to the next visit –missed that house but was rescued by a Mum waving, there is a chance I might make it to Norwich but I think I need to set some more realistic SMART targets!

Happily bouncing with Ryan on the trampoline Jo and Steve and I thought about the need for aerobic exercise daily in school for the children who could so excel in this area of development and the need to consider carefully whether alternative communication systems are functional if there is no progress is made in 4 years! Parents are brilliant at multi tasking, this couple could bounce, field Ryan if he strayed and hold a coherent conversation! We also thought through big problems with sleep or rather the lack of it. Chronic sleep deprivation is a serious problem but it is so hard to get specialist advice. In Ryan’s case Melatonin works like a charm and means he now settles about 7 am rather than midnight or later. The problem to be tackled now is the very early start to the day. They are going to try slipping bed time by 20 minutes and once that is settled then slip another 20 minutes. In this way we hope to avoid the problems of Ryan getting overtired and then miserable. It will take a few weeks and may need some adjustments but this is doable and is developing skill for life.

Jo and Steve and have such great timing with Ryan who does like interaction but is confused about how to do his share. Intensive Interaction therapy can offer a really good way forward and Steve is a natural. Such wonderful shared moments of connection are a joy.

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Parents who already have so much to do every day are ready to try, they are determined for their children. Today both families were seeking a combination of information and practical sessions where ideas can be shared adapted and worked in to the day at home. How can this be provided long term?

It has been such an interesting first day the brain is whirring.