In the meantime, I'm opening my blog up for others to share their stories. I've done this successfully before, with my series 'This is our PDA story' last year, and it was lovely to be able to hear from other families what living with Pathological Demand Avoidance meant to them.
The post below is from a writer who would like to remain anonymous. Parents of children with SEN (Special Educational Needs) can often feel that they have nowhere to turn and no-one to talk to when they hit walls in trying to access services for their children. Thanks to my work on our local parent carers forum in our county I've heard from other parents in similar situations as this, but many are afraid to speak up for fear of worsening the situation for their child. Most support for parents comes from other parents, so please do leave a comment if you can offer any words of advice.
---------------------------------------------------------------------------------------
The SEN road to nowhere...
After spending the evening on Twitter drawing Sean Harford's (OFSTED) attention to a Tribunal case where Cambridgeshire LA are trying to remove a diagnosis of Aspergers from a little boy, I am wondering how far we have actually come since the SEN reforms in 2014.
The media seems intent on paying lip service to ASDs (Autistic Spectrum Disorders), but the reality is and certainly manifests itself rather differently in respect to ASD provision. Not all ASD kids are quietly accessing mainstream with a pair of ear defenders. You only have to look at recent bespoke research on statutory assessment and EHCPs (Education, Health and Care Plans) published on SNJ (Special Needs Jungle) to appreciate that.
It is my daughter's 8th birthday next week and it has taken us five years to secure a diagnosis of Autism. She has inadvertently appeared to evade and perplex the majority of professionals because girls do not present in the same way as boys and very few seem to understand this. There are some rather eminent ASD professionals who will remain completely nameless that have missed this point entirely but looking to the future, I cannot see how ASD diagnosis will really change things for us.
These unidentified needs have impacted her mental health to such a degree that she is now psychiatrically unwell. Our previous LA ignored psychiatric advice for 6 months despite her having an EHCP and despite not receiving full time education. It took them six months to perform her annual review, by which time her psychiatric status had declined to such depths, she was no longer sitting on the corridor for her 3 hours a day of education; she was engaging in repetitive behaviours for 14 hours a day. When CAMHS became involved, we were told it was behavioural despite her existing EHCP for complex needs. We won't - just because of a new diagnosis - get access to the things she needs or access to services. And after fending off our new LA attempting to statutory reassess her despite being psychiatrically unwell, it appears that we cannot even discuss potential placements if indeed she does recover. My expectations of LAs have hit an all time low and the best that can be expected is to 'fight' them in tribunal over placement despite the fact she has failed four times in mainstream. And yes, it is a fight, because the question of placement will be cost-based and not necessarily in the best interests of my daughter. We have been told in writing that panel choose placement.
Although the Baker Small cat is now out the bag - as indeed are all the other domestic LA cats that perform the same function - the question will still remain concerning Ofsted SEN inspections; are they the cat nip that will help the LA tow the line and will they have the teeth of next door’s dog when they are misbehaving?
Clearly, the SEN system currently needs some strong leadership as the SEN journey at the moment is the road to nowhere.
--------------------------------------------------------------------------------------------
If you have a story, point of view or experience to do with SEND (Special Educational Needs and Disabilities) which you'd like me to share on my blog anonymously, please do contact me at stephstwogirls@gmail.com.
