Reviewing …

Reviewing …

Raindrops on roses

“Some people walk in the rain, others just get wet”

Roger Miller

I’d like to think that I maintain a positive outlook and it’s true that our son will pick up on the slightest emotion that my wife and I show, consciously or subconsciously. His emotional wellbeing is so dependant upon us, regardless of what he is doing at the time. If we smile, he knows things are calm and safe, if we frown and hold a stern expression, he questions, “is everything alright” ? and we have to quickly and confidently recognise this and change, to exhibit a happy smiley face and demeanour.

He attended a review in the last couple of days. A clinical psychiatrist and speech and language therapist kept him (and it really was a feeling of being ‘kept’) for over an hour and a half, questioning this and questioning that. For me, I thought many of the questions were asked without any regard for his learning disabilities, which just served to increase his anxiety at being there. Looking ever more frequently at me as if asking for help, without uttering a word, I did eventually bring a halt to it as I could see a meltdown happening and he had been there way too long.

True enough, the wild and uncontrollable temper, coupled with severe upset followed and it was all that I could do to get him home and go through our ‘safe’ routines while keeping a smile and calm voice throughout.

The specialists need to know what progress has been made in a relatively short space of time, but for our son, it seemed like it went on forever!

We have been told that he hasn’t developed at all since we were there last and that many fears and anxieties had been amplified. A backward step. Medication changes had been responsible for some input to this as well as a lack of adult care support for those over a certain age with Autism and additional complex needs. In short, if we don’t, nobody will.

We have come out armed with more techniques, ‘Talking Mat’, ‘Room Diary’, ‘Audible and Visual event slideshow’, ‘Short trips’, ‘Happy pictures’ so on and so on …

I’ll not knock any of them as they all have their place, and many we have used successfully but I do get to regret that his autism was not identified at a very young age, but rather struggle through the last 30 plus years and now trying to re-educate his mind to develop coping mechanisms that will last and not forgotten at the slightest change.

It is through times like this, you need to have a mind-set that you ‘walk in the rain’ and not ‘get wet’ as the successes and achievements, no matter how small and brief are well worth the continual effort that is needed to achieve them and though you may feel alone against the world with the ongoing challenges, your not really, and to quote a line from a movieย  … ‘help will always come to those who ask for it’ …

That help invariably comes from your friends ๐Ÿ™‚




6 thoughts on “Reviewing …

    1. I did make reference to the gulf between text book theory and how it applies to real life, Les. I’m pleased they did see the consequences of the time it took developing, but they then move on to another client and we pick up the pieces. The trouble is, I dare not withdraw him from the input as we would likely not get back in again. I will plan how we go about it better for next time. Thank you for you support as always ๐Ÿ™‚

  1. Oh no. That sounds like it was a nightmare, not help. Marc hasn’t got the concentration for hours of questions, let alone knowing how to answer them.
    I sometimes wonder if the specialists know what they’re doing. Though like you I won’t knock them (too much).
    On top of that, it sounds as though you’ve come out with a load of things to help him, that in fact, you already use. ๐Ÿ™
    Hope it doesn’t take Marc too long to calm down again Paul.
    Not having found out he had autism until so late isn’t helpful, but I’m sure the specialists have come across this before and should be better able to help.

    Take care all of you. My rant is now over!!

    1. Thank you so much for your support Jane, I really don’t know what the answer is. We need input from those who know, but recognise that we can’t get shorter more frequent appointments due to the overwhelming demand for these services. I do feel that, although we are by no means alone with a late diagnosis, those in Marc’s position with additional complex needs, are either, left as unable to do anything so just monitor them, or worse (in my mind) assume that as he is an adult, his form of Autism ‘must’ be Asperger’s, and wrongly believe he is in control but has particular traits that he excels at. In truth neither are right. So much is put into supporting young children, so they grow with far greater and lasting ‘coping mechanisms’ as they grow and I have to accept this is how it is.

      I still find that I get so much from my own reading and investigations and ‘talking’ with the likes of yourself, your friend and Author, Ellen Notbohm. ๐Ÿ™‚

  2. I think it is important that you continue to educate yourself about your son’s abilities. Often – we as consumers of health care bring the solutions to our providers. Also – you were right to advocate for your son with regards to the session length. You know better than they the things that trigger events. Take care Paul and stay strong!!

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