Do The Decent Thing

A parent member of the NFIS support group posted this today:

I need to write a letter to my daughters school, Paediatrics, CAMHS, ‘high ups’ in the NHS and DfE, Norfolk County Council (education and social care) and my GP Surgery (think that’s everyone). But I’m tired and weary of it all so I’m going to practice here just to get it out.

Dear All,

You have consistently and persistently failed to acknowledge that children and young people are struggling (and dying) due to our outdated, inflexible, pompous, jobsworthy, bureaucratic, mismanaged and tick-boxy education and health (Ha! More like oil and water!) systems.

My daughter has been out of school for months and this is a school with a ‘specialist’ (I use the word lightly) resource base for children with ASD.

This week I had a visit from an alternative provision (outreach/online) which I will fund privately as the school refused. This is a basic package. The better package is for children with an EHCP (you know those plans that the new legislation was going to ensure revolutionised the meeting of SEN needs? Bollix!) or the LA won’t fund it.

Now I thought (more fool me) that my daughter would have a place at the actual school of this outreach service in September. Seemingly not. Because I didn’t spend every waking moment phoning, emailing and chasing people so now it’s all just left hanging. 

The school then emailed all delighted with themselves to say they could now accept medical needs as the reason for absence and could source a tutor on these grounds. Prior to this it was refused as her ‘anxiety was caused by her ASD and her ASD needs could be met through the SRB (the one she can’t attend due to her anxiety!). And why the change? My daughter took an overdose.

So now she’s really ill whereas before she was just pretending? 

Not one of you can implement the culture change that is required for real inclusion and acceptance of difference to happen. But working together you could.

Shame on every single one of you that allows children and parents to go through hell. If I fight I’m aggressive, if I don’t I’m disengaged. If I’m anxious or depressed I’m unstable. If I make jokes to cope I’m not taking it seriously. If I write too many emails you comment on my parenting and how if I focussed on my child and spent less time complaining etc. 

But if I cry because it breaks my heart to see my beautiful, bright and funny daughter be eaten up by anxiety and depression and the belief that she’s a failure, then actually that’s because I’m her mother. And if I write to you all every day until someone helps not just us but all the families like us, that’s because I’m a passionate, caring and strong woman who wants this to end?

And it could end. Forget the paperwork and the tick boxes and the resource implications. 
Honestly and courageously start doing what’s right and stop wasting time in meetings and on writing endless policies and strategies.

Because right now we are sick of hearing about how there isn’t enough capacity / resources / staff / money or school places. 

We want change. Real change. And it starts with you. Today.

So, pass this round your organisation, ignore it, write an insincere letter of apology, find my daughter a school place and fund it in the hope of avoiding a tribunal, OR, do the decent thing and take action.

Yours, 

The parent you all like to blame.