You may remember a few weeks ago, our request for Jude to attend a weekly boarding school was turned down by the Panel. The educational side agree with our school choice and appear happy to fund his place there however the social care department aren’t willing to pay for the residential element of his care. They feel that the four hours respite support work that we use each fortnight is adequate at present.
The Panel instead suggested I accept a referral to PALMS (Positive behaviour, Autism, Learning disability and Mental health Service) which is part of the NHS. In PALMS own words they “works across the county providing a specialist multi-disciplinary approach to children and youngpeople aged 0-19 who have a global learning disability and/or Autistic Spectrum Disorder and their families. PALMS clinicians comprise a ‘virtual team’ delivering a consistent service in a variety of community settings.”
I arrived for my initial assessment appointment yesterday with more than an ounce of scepticism but wanted to give it a chance because…well, I have to. If I turn this down on the grounds I know it isn’t going to help, the Panel can throw it back in my face and say that I’m not attempting to help myself or take on board the support I’m offered. So anyway, I turned up with a snoozing Emmeline in my arms and was met by a lovely special needs nurse who ran me through his list of questions.
In a nutshell, they largely work with children who have issues around sleep, mental health and eating so I’m not entirely sure how they’re going to help us. Yes, Jude has massive amounts of anxiety but he doesn’t have the capacity to discuss his issues or take on board any suggestions the “professionals” may have for him.
I was asked what three aims I’d like to work towards and I’m not going to lie, I was stumped. In my head I put forward:
- To sleep more
- To drink a hot cup of tea once in a while
- To go on a beach holiday on my own with just a book
But what I came up with, following a lot of prompting from the nurse were the following:
- For Jude to learn to control his anxiety whilst waiting for the school bus
- For Jude to understand that Emmeline or Elsa crying isn’t a bad thing and to try and contain his emotions (i.e. not have a melt down)
- For Jude to put himself to bed when he wakes up in the middle of the night and not freak out every time.
I left feeling like I’ve ticked the box to say I’ve tried it but in reality, there is no way Jude can participate in any sort of action plan for the above. Nevertheless, I’m going to be allocated my own PALMS contact (can’t remember their title) who will write out a behaviour plan for us and then we’ll take it from there. I did have a little chuckle to myself when he asked me to list all the services we have used in the past or currently use…I think my blank face said it all so he suggested a few organisations to prompt a reply but I had no answer as we’ve never been offered or even heard of any of them!
In the meantime, I’m attending a conference at the end of June which is about how PALMS can help families and a little about how to cope with challenging ASD related behaviours. It lasts nearly all day so fingers crossed it’s interesting.
Our SEN Officer is going ahead with the Panel requests (the educational side anyway) and investigating two school options – the school I desperately want and another, very good but only day placement school near to us. I know one boy there already and he’s very happy but I’m not convinced it’s the place for Jude.
We also have an Educational Psychologist visiting Jude at the end of June and I’m hoping she mentions in her report that Jude needs more than just an education from a school – it has to be about his emotional and social needs as well (duh) and therefore it must be a school that has high ratios of staff and the capabilities of coping with a handful of a child!
So it’s slowly coming together. I feel like everything is contained and I’ve pinned my contacts down to just a few people. It’s taken me nearly two years to understand the system and I still feel like I’m learning with the occasional curve ball thrown at my by the council. I just can’t believe how complicated it is to try and get decent support so if anyone is going through this process and wants suggestions then please email me, I’m more than happy to help all I can.