The EHCP Process: An exercise in jumping through hoops?

Securing an Education, Health & Social Care Plan to support your child's special education needs feels at times like being forced to jump through hoops, over and over. Having been through this process recently I thought I should share our story, and my tips for getting through the process without getting burned.

I wrote last year about our youngest son and his diagnosis of autism spectrum disorder.  You would think, being the parents of a child with learning disabilities (and a syndrome associated with autism) as well as a highly intelligent eldest child with aspergers/high functioning autism, that we could have spotted it a mile off.  But the reality is, just as I tell the professionals, every child is different, every child presents differently.

So Jules has an official diagnosis of Asperger Syndrome (now commonly known as high functioning autism).  His issues are very much around anxiety and he has speech and language and executive functioning difficulties which in a nutshell have meant that transition to a huge London high school from a small suburban primary was overwhelming for him.

Learning to dance in the rain

Sorry readers, I have neglected you for far too long.  Truth is, this crazy, busy, plate spinning life of mine has gone into warp drive and this combined with some lovely seasonal lurgies knocking us all down like dominos has left very little time to do any writing.

I'm just back from a  half term break with Jules, thanks to respite support from The Children's Trust at Tadworth and my mum stepping in to hold the fort in my absence.

I  really needed these few days away from what has become our normality to regroup and recharge, things happened so quickly over the past few months and it has been difficult just to catch my breath with the speed of events.

I went back to Normandy, so strange to think that last August Andy and I managed to work the logistics to take a break here without children, it was a lovely few days together, oblivious to the bomb that was about to go off in the middle of our lives.

It is amazing though how quickly it has all become our new norm; chemo, injections, juggling respite, adapting to a new raft of medical terms.

After 5 gruelling rounds of chemo, Andy had scans which showed that the drugs are working, the primary tumour in his bowel  and the secondaries in his liver have shrunk by 30%. In fact the treatment is working so well that the liver surgeons have asked for 2 more rounds in addition to the initial 6 planned to optimise tumour shrinkage.  The plan is then for more scans, followed by a week of intensive radiotherapy treatment on the primary tumour and while that is cooking (the oncologist's term), resection of Andy's 3 liver metastases, followed, once he has recovered by removal of the primary tumour.

What I told the Minister (& what I would have told him if I had more time!)

So what do you get when you put 11 very opinionated, passionate, at the end of their tether Mothers of children with Special Needs Children in a room with the Minister for children?  A meeting that almost became a group therapy session that could have run all day if the very harassed clock watching aides would have allowed it.

I'm third from the left in the black dress

I met with Edward Timpson, MP - officially known as the Parliamentary Undersecretary of State (Children & Families) earlier this week as part of a delegation of Bloggers with an interest in SEN invited by the Tots100 bloggers forum.  We were specifically invited to discuss our experiences of the Special Education Needs system - each of us bore our individual battle scars from our dealings with the system and over and over the same themes came up, and in a way it was good to know that I was not alone in my battle to ensure that ALL my children achieved their potential, regardless of their ability or disability, age or gender.

Life in the SEN Pinball Machine

Just blowing the dust and cobwebs off the blog before I begin..... not only has my trusty laptop failed me and just like in the early months of this blog I am reduced to borrowing my son's computer, I am also just about emerging battered and bruised from what can only be described a rocky start to 2013.

Life is never going to be easy parenting four children, especially when two of them require additional attention but when you are also battling the system to get your children the support and help you need then reserves run dry very quickly.

A different operating system

The quote above appeared on facebook a few weeks ago and for me it was a eureka moment, it encapsulated what life is like for a person with Autistic Spectrum Disorder, a person like my son, Theo.  In a moment I realised  what I had been struggling to articulate, that Theo is a Mac and the rest of us are PCs and we are trying to operate a Mac like you operate a PC....and if you are not familiar with these two operating systems it's like trying to manually change gear in an automatic car or speak French in Germany...you get my drift.  In other words the normal (what we perceive to be normal) rules do not apply.  When you have a child with Aspergers, many of the normal rules of parenting don't apply and you have to revisit how to parent in a way that can sometimes completely go against your instinct......