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.

Let's talk about death (so we can get on with living)

We really don't handle the whole issue of dying well in this country do we?  It's just not something spoken about, a taboo subject.  We are all going to die so why do we not make sure our wishes are clear so that whenever or wherever it happens those who are left behind know what to do.

We have been thinking and talking about death a lot recently in our family. For 10 years we have lived with the knowledge that one of our children will likely not reach adulthood.  She has defied the odds over and over but medical intervention keeps her alive and that can't keep working forever, we don't know when, we don't know how but we do know we have to cram in a lot of living with Daisy because she is not going to be around for as long as the rest of us....or so we thought.

Cancer Relationship Status: It's Complicated

I guess it's time for an update on Andy's cancer treatment. It's 6 months since he was first diagnosed with stage 4, metasticised colorectal cancer.  On diagnosis he was found to have a large tumour in his bowel which has burst out of the wall and three very large tumours on his liver.  He started on a very brutal chemo regimen of 3 different chemo drugs plus a monoclonal antibody and after 8 rounds scans showed the tumours had shrunk back by nearly 50%.  

A&E is not a dumping ground

Before children  I had never paid a visit to the local accident and emergency department as an adult.  When my first three came along I had a few visits there, mainly for high temperatures which were not responding to the usual treatments at home, two of those visits resulted in Xanthe being hospitalised for care so clearly my instinct that this was a genuine medical emergency was right.

Daisy's discharge from the neonatal unit also came with a gold plated, annual pass to the local A&E department however.

For the first few years after premature birth children are much more susceptible to infections which are far more serious than the usual childhood bugs, we were in and out constantly.

Overcoming my British reserve (all thanks to Amanda Palmer)

When I go to Glastonbury I prefer to wander around around, discovering music that I might not otherwise have heard if I stuck to a rigid list of bands I want see/the mass media suggests I see.

It was during one of these wanderings in 2013 that I found myself at the Other Stage watching the most amazing crowdsurfing I had ever seen.  I saw this incredible woman being carried across the crowds with a huge train billowing behind her, and all the time she was singing, a strong powerful voice, a strong powerful song.  This was my introduction to Amanda Palmer.

Amanda Palmer Crowdsurfing at Glastonbury 2013 (from

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.

Another year over, and a new one just begun...

"So this is Christmas, and what have you done?  Another year over, and a new one just begun..." (John Lennon)

Well hello 2015, and what do you have in store for us?  2014 was interesting to say the least.

It's amazing when you sit down and do a bit of an audit of good things versus rubbish things that happened last year we did manage to squeeze in a lot:-

Good Things

Going to Disneyland Paris
Going to the Caudwell Butterfly Ball and Kylie Minogue meeting Daisy (while Andy sneakily managed to put his arm around Kylie's teeny tiny waist)
Going to Latitude Music Festival in our Camper Van
2 Marathons, 1 Ultramarathon, 2 10ks, 2 Half Marathons, a couple of 20 mile road races and a smattering of club races/cross countries completed
The arrival of Pluto! (our working cocker spaniel puppy aka bundle of trouble)
A lovely family reunion at Andy's cousin's wedding
A few days in France, sans enfants
Celebrating Daisy's 10th Birthday - a huge milestone
Seeing the Poppies at the Tower of London

Pluto (5 months) in the Autumn Leaves