Well the light hearted, fun chit chat involving LB and his unusual take on the world, that partly inspired this blog, seems pretty distant now. I’m glad I captured some of it on these pages. It’s currently masked by reasonably regular extremes of behaviour that are unpredictable, aggressive and deeply upsetting. The trouble is, there isn’t any real (effective, valid, meaningful) support to deal with this.
I got a call at the beginning of a meeting in Manchester on Monday, after a Mother’s Day that included, in equal measure, horror and lovely, lovely love stuff. LB had had a serious meltdown? crisis? situation? at school. It sounded awful and his teachers and the school nurse were understandably shocked and upset by it. I could only say, standing in the corridor, trying not to cry with the futility of the situation, ‘I don’t know what to do’.
Cripes. Well who does know? Who should know?
Er, health professionals? Highly trained specialists who have the relevant knowledge to help LB and guide us through this.
No. Not really.
Trouble is, they won’t say that.There is a faux professionalism that involves sticking to a script that is irrelevant. Without that script there is nothing. LB’s unusual behaviour challenges, tests or confounds the boundaries of their knowledge. And this, in turn, is complicated by the resources available. This is not a comfortable situation for anyone, so we go through the motions in a performative way. Questions asked. Answers given. And they (pick your health professional) ease out of our home. No further forward. No change.
Tomorrow it’s the turn of the (learning disability service) psychologist, who was passed the baton by the (learning disability service) psychiatrist (who did nothing). Our GP embraced her contribution this afternoon in an obviously appalling situation. I promised to be open-minded when I meet her.
“Can you prescribe something like a horse tranquilliser as well, maybe with a dart gun, for those particularly tricky moments?” I asked. “No,” he coughed, “this can’t be resolved through medication. LB needs help to learn strategies to manage his behaviour, aggression and anxiety. That is the role of the psychologist.”
“Ah, okeydokes,” I said, leaving his office, with my promise taking a hammering.
mydaftlife 
So frustrating when the ‘professionals’ let you down. I found a local Family Counseling group who were really supportive and helpful. They had no problem with Becky’s limited cognitive abilities, and we’re really great with her. It was long year, but worth it. I thought I was going to lose my mind until I found this place. Good luck with your search.
Thanks for this. I’m so glad to hear that you found some support.
I asked the same questions over a long three years, stun gun was my thought for all this unexplained aggression when all else failed, alas I could not get hold of one, poor sleep no medication available for that, lots of parenting advice and behaviour management from many less experienced(professionals) than ourselves, good periods awful periods medication for behavioural aggression that created side effects(No not parents making it up as they were not keen on medication)Psychiatrist advice teach him to manage his anger by deep breathing, counting to 10, look at a point in the corner to focus on, not a word of it understood by our learning disabled child!, the finacial agenda ever present no proper assessment resulting in eventual sectioning and hospitalisation 170 miles from home. Our initial relief that at long last our child would get proper assessment was soon shattered the traumatic removal from family and the familiar in a major crisis was costly, both finacially for the authority and for our child( I believe at and average cost of £3.500 per week for 6/12 ) very heavy medication had major side effects and problems, not to mention the vulnerability of being so far from home the experts(family) not being able to monitor on a daily basis, there were some very good and caring staff/carers, a unit manager and a Consultant who spent time with the children getting to know them, but our child was still a victim of an incident requiring a serious incident review, but he did get a diagnosis!
Why isn’t there some decent assessment centre locally, it must be financially viable as several local adolesence are placed in such institutions each year not to mention possible better option for the individual and their families. LB and his family are our friends and were with us every step of the way,I feel helpless because there does not appear to be any provision out there for the most vulnerable, my heart aches for them
Thanks Fran. I can’t believe we are mirroring your experiences. Awful. xxx
Just to say yes, it’s *awful*.
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