Thank you for this . It is turning into a nightmare. I had a call with my sons GP last week, who insisted herself on recording the call! She had witnesses in the room too. We went round and round in circles and she said she had to take it on "face value" what social services were telling her. It was...

Its been a while since I posted on here, but wondered if someone could help me .It is a complicated situation, but i will try to explain.... My son has very rare health condtion. I have been navigating through the special needs world too. His paediatrician acussed me of suffering from munchaussen by...

i hear you! evenings are worst time for me. and even if i write emails to services they use it as an excuse to say i a bonkers. its actually the evening when i need most support!

Yes been through the same. You get so depressed when they make all sorts of mistakes, but when you are trying to advocate for a vulnerable disabled child you often have to just turn the other cheek. Because ipicking a fight about them getting your name wrong is the last thing you want to do for your...

I battled for years with GOSH saying I did not believe the ASD was the final answer. WE got lucky because they were doing a genetic study for children with developmental disorders. Obviously I enrolled him straight away and they did whole genome sequencing. It still took many years before the databa...

Hi all carers with ASD family members. My son had diagnosis of ASD. I insisted on more testing and he had whole genome sequencing. They found mutation in AHDC1 gene. The researchers in US say the syndrome has significant overlap with ASD and they think many ASD patients and those with learning diffi...

I agree. I kept getting harrassed about working or not working from SS for years and I struggled. Now my ASD son is with his dad and locked in his room every night. He has a rare syndrome that causes breathing difficulties and SS are refusing to help him. So sometimes carrying on going to work is no...

i understand this completely. But BUT my sons dad who is locking him up every day is refusing to provide information that even allows him to have legal aid. I have spoken to the police just now who agree that this is illegal. unbelievable

Thanks I feel a bit better. i got a call from GOSH today. They have agreed to have a call with the local paediatricians and social worker. they want to explain in a bit more detail for disorder he has so that the local team know what they should be looking for. i am beyond horrified what i have had ...

i am frightened, I know he needs to be removed from his fathers care. He is being left to die there.....