Category: Peter and Lily’s Mum

Washing Powder

Washing Powder

I collected Peter from his residential school today and his clothes smelled of the school washing powder.

So what?

Jo sat an exam last week.  Her mum and dad knew nothing about it until the last minute.

DJ had his hair cut without his mum or dad knowing.  The first they knew was a photo he sent to them.

It matters.  That doesn’t mean it’s all a bad thing, but it matters and it hurts.  The fact that the care staff at Peter’s school do his washing and that Peter trusts them to do it, is huge.  At his last school “Peter to do his washing on a Friday” was one of his five awful targets.  He is ‘demand avoidant’ (his significant anxiety problems can become overwhelming if he feels people have expectations that he can’t meet).  He was 10 / 11 years old at the time and not long out of a mental health unit.  Which ever way you frame it, it was inappropriate.  It was too much to ask of him but he was judged on this utterly stupid target all the same.  When he didn’t manage to keep track of his washing he ran the risk of a member of care staff doing it for him and ruining his clothes.  It became a loose, loose, situation that slimply served to drive up his anxiety.  Either way he rang me hyperventilating with stress, anger and worry over mouldy swimming kits and ruined clothes more than once.

Peter has sensory issues, and since mainstream school destroyed his mental health I have been looking after him and unable to work.  Finding clothes that he found comfortable was difficult and he worried about the cost.  So he worries about his clothes, he found the pressure from the ‘target’ very stressful and then when they got ruined he was distraught.

So you see I am grateful that the staff at his new school take such care of him.  That he trusts them to take care of his clothes after such a short time there.

It hurts all the same.

There is another point to all of this too.  The journey/path/fight (what do you call it?) that we have taken to the point where our child is able to access the education, care and therapy that they need is, for everyone I know, for one reason or another, horrendous.  So actually, as DJ’s mum points out – you want to be involved in the good stuff, the successes.  Please don’t take those away from us too?

Not once in a million years did I think Peter would live away from us for much of his childhood.

We want our children to have whatever they need to have an exciting, happy and productive childhood, and want them to be in a fit state to live independently and happily as adults.  We don’t, however, ‘want’ our children looked after by other people.  It’s what they need but please don’t think, for one minute it’s what we wanted them to need.

No one gives birth to their child expecting that 9 or 10 years later they will be living most of their childhood away from home……

The washing powder smells nice.  For me its a happy smell (if there is such a thing), a reminder that Peter trusts his care staff.  They do his washing for him.  The waking night staff will iron it for him too if he wants them too……. and he likes that.

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Bullied by Headteachers: No fresh starts allowed.

Bullied by Headteachers: No fresh starts allowed.

I learned a lot from the contents of my Subject Access Request.  Under the Data Protection Act I requested a copy of Peter’s files and along they came.  In theory, there should have been no great surprises should there?  School staff should work with me in the spirit of a shared aim of ‘the best for Peter’, shouldn’t they?  Any concerns/thoughts/ideas/letters/reports they had should have been discussed with me shouldn’t they?  I had assumed we should be working together, certainly, I had naively trotted along to meetings with them being open and honest: expecting the same professional standards from the adults that call themselves ‘professionals’ within the school setting.  I was mistaken.  My expectations of decent/adult/professional behaviour were very misguided. Continue reading “Bullied by Headteachers: No fresh starts allowed.”

Equality can cause inequity – blanket school policies should be challenged.

Equality can cause inequity – blanket school policies should be challenged.

Each time I hear of a ‘ban’ on the latest craze of fidget toys my stomach churns.  You see, with good reason, I don’t trust all school staff to understand that equality causes harm to many with SEND.  Equality can prevent Equity as Linda Graham demonstrates….

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Continue reading “Equality can cause inequity – blanket school policies should be challenged.”

Wise Words

Wise Words

“Well if she had tried everything, then that was the time to bring in someone with some more expertise.”

…said the rather sound, very experienced, occupational therapist (OT).

Peter’s Year 1 teacher had told me that she had tried “Lots of carrot and lots of stick” and that “Nothing worked”.

Peter’s OT was intuitive, inquisitive, child-led and had had additional post-graduate level training in sensory integration.  He first saw her in Year 4 and for some reason the subject of his Year 1 difficulties had come up in conversation.

Sounds so obvious to me now, but until the OT uttered these words it had never even crossed my mind that the Year 1 teacher should have realised that Peter needed a more skilled assessment of his learning needs. Continue reading “Wise Words”

They’re not asking for much..

They’re not asking for much..

Initially Peter wanted:

  • to be believed by his teachers;
  • some minor (mostly free) accommodations at school;
  • the school staff to work with the NHS staff who: were appropriately skilled, had thoroughly assessed him and were willing to give their time for free to help them to think about these minor accommodations;
  • school staff to learn to understand more about his difficulties and
  • to believe his mum when she described how hard he was finding life.

We have come across some great people along the way, and I do think that there will be a pretty good ending to this story, but the last few years of Peter’s life have been extraordinarily tough. Continue reading “They’re not asking for much..”