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 heard 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.
Walking 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.
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.