Hi
I live in South West London.
I am married. I have an adult diagnosis of ADHD, Agoraphobia and I have funding agreed for an ASD diagnosis with the NHS. I have formal EP tested IQ in the ‘gifted’ bracket. I believe I have what was previously called Aspergers or HFA. I also have sensory processing difficulties over every area which is likely the ‘true cause’ of my agoraphobia.
I have six children who were all born prematurely because when I was in local authority care I have a gynae procedure which means that I am at high risk of having prem babies.
I have 17 year old son with ASD, Learning Disability and Sensory Processing. He is in an Autistic Special School and has an EHCP.
I have a 16 year old son with ADHD, he has an EHCP but is in private tutoring.
I have 14 year old daughter in a blind school. Registered severe sight impaired with Hydrocephalus and and EHCP.
I have a 11 year old daughter with an EHCP in a mainstream school with ADHD, Dyslexia and Dyscalculia.
I have an 8 year old son with Diplegic Cerebral Palsy, Non Verbal Autism with high support needs who is severe sight impaired. He is in a blind school.
I have a four year old with Oral Motor Dyspraxia and also ADHD with an ASD diagnosis pending.
I have 5 cases under legal aid with a SEN lawyer. I have 7 cases of clinical negligence, 1 case which relates to my time in local authority care (same Borough) and also 2 disability discrimination cases pending.
I have a care package with both children’s services and adult services. It doesn’t fully meet the needs but it’s an awful lot better than nothing which I had for years.
I am a very capable woman. I am ‘clever enough’ to understand what I need to do and how I need to do it. However my social skills suck due to ADHD and ASD. In every other area of my life these do not cause me massive problem however when dealing with the council i find it soooo difficult and they make life very very difficult for me (not particularly me) because i know it’s the same for everyone pretty much.
In 2016 I really did reach breaking point. I had to break down and for there to be ‘risk’ before they would help me. I had begged for help for months/years before.
Now I’m going through all this SEN stuff and at the moment I feel like I can’t engage with them because they upset me so much and I am not dealing with it very well, I recognise that. The constant delays, errors, chasing, chaos, problems take up so much of my time and really break me down because I must also ‘care for these children’.
I really need some sort of advocacy and I wondered if anyone could suggest anything.
I suspect the council would probably pay for it as well.
Thanks.
