Filed under: Radio | Tags: Guerrilla Mum, Jenni Murray, local authority, NHS, SENDIST, Woman's Hour
I would like to say a huge thank you to Jenni Murray and the staff at Woman’s Hour for inviting me to be on the programme today. Never having done anything remotely like this in my life, it was a real adventure! We hadn’t told the children beforehand because we thought it might divert them from their school day, but we needn’t have worried. My husband told them about it on the way home from school in the car but frankly, he says, they were much more excited about going to McDonalds for their tea! Quite right too ….
Having rehearsed my answers to possible questions on Woman’s Hour all week, I waited on my own in an otherwise empty and silent studio for my part of the show to begin. My legs turned to jelly, my mouth went dry and all the carefully prepared answers disappeared. Yes I was incredibly, mind numbingly nervous and despite Jenni’s very helpful questioning I didn’t get to say all that I wanted. Being on the radio is much more difficult than it looks! Fortunately there was another mum on the programme who sounded very calm and said some of the things I would have liked to have said – so thank you to Mencap’s Pam Johnson – I am glad somebody said them, even if it wasn’t me!
However, in the blogosphere I am the mistress of my own destiny. Having failed completely to answer Jenni’s first question, as to why I called the book ‘Guerrilla Mum’, the answer is as follows:
‘The book represents one family’s struggle to get the right support for their children with SEN. This was an extremely adversarial process. The campaign was fought on so many levels; we used the local authority and NHS complaints procedures to get the services our children needed. We appealed (twice!) through the SENDIST tribunal. We also used the local authority’s own policies to justify the things we requested for our children, such as the local authority’s Educational ICT policy when we requested laptops. There was also a battle for the hearts and minds of the teachers and other staff who worked with our children at school. Staff who at first may have seen us as neurotic parents became real champions for our children at school and made an enormous difference to their lives. The book is intended as a guide for other parents to use in their own battles to obtain the help their SEN children deserve, and to spread the word that this is a fight that can be won if you have the right information.’
So that’s it, really. That is the thing that irked me the most. I had let myself get so wound up that I missed my opportunity to say the things I wanted to say and I have felt a bit let down by myself all afternoon. Fortunately for me, I have William my son to put things into perspective for me. He tells me that this sort of thing happens to him all the time, but that the thing is to try to go back and make your point. These are wise words indeed from a boy who really knows what it is to struggle to find the right words. I am lucky that this only happens to me when I go on the radio … so here I am, taking his advice, safe in the knowledge that the main message about the importance of meeting SEN still managed to come across despite everything. And that really is the main thing!
If I am ever invited back, I will send them a letter ….
4 Comments so far
Leave a comment
Guerrillamum's Blog 
Hi Ellen,
Call it chance, or divine intervention, or whatever, but for some reason I tuned into Radio 4 earlier today, literally moments before yourself and Pam came on the air.
My little boy who is 5years old,has recently been diagnosed as ASD (Which we have suspected for a few years). We have had a hellish time with his school whereby he has been branded as behaviourally disruptive, has been seen as a threat, had numerous exclusions placed on him, to the point that permanent exclusion has recently been threatened should a managed move place not be found as a result of his last 15 day exclusion which expired on Tuesday this week.
We are fortunate that we have managed to have a place at a new school which he started this week to good results, where they appear to have a pro – active, ‘suck and see’ policy.
You are probably very experienced in the above,to say the least.
My point here is that we are only just at the beginning stages of our battles against his last School (who still currently maintain control over him) and the Local education Authority (Who have been useless). We have had to make so much noise to get external assistance for him in School and in the main to actually try to get the staff at his old school ‘on board’ and understanding of why our son isn’t ‘The Norm’ to little effect.
For people who are not in this situation, I don’t think that they can begin to understand the stresses and walls of beaurocracy that become to inundate your daily life, and the levels of correspondence and phone calls that have to be made to get seemingly nowhere. Sympathy simply doesn’t cut it.
I have to say that in Manchester, where I live, we have received invaluable support in the main from Parent Partnerships and the local support agencies such as BLIS, CLASS & TASCA.
My sons last school, prior to the managed move, have acted in an absolutely shocking manner and fashion at most of the steps prior to, and including our sons diagnosis, seeing him as more of a health & safety threat towards staff and pupils, and never fully implementing or understanding the advice of external agencies regarding often simple strategies that could be put in place to avert some of his behavioural anger issues.
I can’t say that it’s reassuring to have heard both yourself and Pam this morning, as it pretty much ices the cake of reality, that we are in for a hard and long fight, but it’s a fight that I am well up for. It was however great to actually hear some of the issues being given the spotlight on National Radio.
So, I thought I would jut try to find you on the net to pat you on the back. You did not let yourself down today, you sounded lucid and together, and if I was having to face the prospect of a live National Broadcast, I would have probably crumbled.
I’d like to say thanks for your contribution to Womans Hour, and the very same to Pam too.
Best Regards,
Jason Crawley, Manchester
I’ll be ordering a copy of Guerilla Mums and hopefully will try to digest a lot of what is on your blog, as obviously I’ve never heard of you before today.
Comment by Jason Crawley November 5, 2010 @ 11:22 pmJason, thank you very much. It makes everything so worthwhile when people write messages like this. You are exactly who I am trying to reach, and you have made my day, probably my week. This is a battle that can be won if you have the right information and support. Try to make contact with other parents, read books like Guerrilla Mum and as you are doing, get help from parent support organisations.
Thank you again for your wonderful post.
Ellen P
PS I am on Twitter too!
Comment by guerrillamum November 5, 2010 @ 11:32 pmJust to let you know I heard the interview too and I’m a mum of a teenager with special needs. Well done!! Radio interviews are tough, so pressurised! Here’s my experience:
Comment by Helen Hunter November 23, 2010 @ 5:04 pmhttp://coldtoesonchronicillness.blogspot.com/2010/07/p-p-p-peston.html
All the best
Helen
Dear Helen, thank you for posting! You are so right about the necessity for parents to continually monitor their child’s situation at school and to ensure that all the provision put in place for them continues to happen.
Comment by guerrillamum November 23, 2010 @ 5:52 pmBest wishes
Ellen P