Mary FOF

Hi everyone. I’m a new member of your community from today. I would like to briefly tell you my story about my son 10 years old with Downs Syndrome and ASD. He was born as a strong and healthy boy with small numbers of DS futures . Genetic tests confirmed that he has Trisomy 21. He was developing very well till he turned…

I need some advice about universal credit my partner has health issues and I am currently caring for him we also have a son who turns 3 in May and going by the rules you have to start looking for work when they reach this age I am aware that universal credit provides child care for up to a certain amount of hours but I…

I hope to speak with like minded parents/carers who are going through similar experiences/struggles with their children

My DD is in mainstream school. Got her EHCP in Sept 2023. She has been on the verge of permanent exclusions quite a few times. However, we feel that since the EHCP things have improved, she is attending lessons, albeit not the mainstream ones. She has 1:1 for Maths/English and 1:1 TA support first thing each morning to set…

Hi there, Our private landlord has given us section 21 which is ending in 4-5 days. We are on the housing register already. Council is aware of the notice & asked all the documents we had from our landlord. They said they will check if the notice is valid. Really anxious with two special needs children what will happen…

Hi again, so I’m just wondering about the moving around question and what to tick for the distance my daughter walks. She is an ambulatory wheelchair user. She can walk up to 50m and then gets pain & breathlessness. We have clinic letters stating this. However at school she walks further than that because she won’t use her…

hi all, My son has severe ADHD and been accepted for an EHCP assessment. He is medicated effectively for his education only and takes it only for school, and the medication does significantly improve his ADHD symptoms to allow him to be able to sit still in class and he presents with less symptoms. I asked his SENCO if I…

Sensitive issue. Please be kind. My son is 18 and I am his appointee. He keeps bringing cannabis to our home. He gets £300 UC a month (pays us £100 a month board). The £200 he has -its all gone in 2 days on drug debts. He has a UC work coach but is consistency refusing to work. He agreed to attend a short course but…

I have a annual review for my sons EhCP and he is currently going to a mainstream high school in year 7, but is not coping and I have taken him out due to suicidal thoughts and started to self harm, my concern is now I have taken him out of school, he does not want to go back and I would like the LA to consider a move to…

Hi, I had a bruising time getting my daughter into a specialist school that could implement her EHCP. Both her mainstream school and the LA failed her. I want to put in a formal complaint to let the school and LA know that their inaction was detrimental to my daughter forcing me to remove her. Her mainstream school…

hello, I have joined as I need good advice on a situatuation. My daughter has a disability, mostly neuro, overlapping migrainal/epilepsy disorders. After finishing 6 form school she went to college to get better marks for English/maths, this was over a 2yr period, she was on dla from 17yrs old, in 2016 she was put on ESA…

I know rules have recently changed but I am currently in receipt of LWRCA and pip enhanced rate and low mobility. My adult child is going through psychotic episode and has been told by the psychiatrist he cannot work and will not be able to attend uni in September as he had hoped as he definitely will relapse due to…

hiya, my daughter was diagnosed with a progressive neurological condition at the start of this year. I’m finding it very hard to come to terms with and really feel alone in it. I would love to talk to other parents whose children have similar disabilities. For reference my daughter is only 7. Thank you.

Hi all, I have a 10yo (W) & a 5yo (A) both boys… W has been diagnosed/medicated/receiving DLA for 3/4 years now, and I seem to remember getting the back payment before even the explanation letter! For A we have been waiting since forms went back in 13/08 last yr. Since we hit the 20wk mark I’ve called DLA twice & (yay!) a…

Hi I wonder if you can help me, My daughter is on the waiting list for ASD and ADHD assessments. But with her being in year 5 at school we need to get her EHCP done so that when we apply for school at end of 2025 we can look at special schools. The school she goes to have said they wont apply for EHCP until she has a…

I am a foster mum. Baby R is with me, 3 months old with emerging spastic cerebral palsy following birth trauma.., community peads team rejected him saying he needs acute care, ( as possibly I am Seeing vacant episodes and spasms). in the last 3 weeks we have visited 4 nhs hospitals and had 1-4nights in 2 of them… acute…

I've been really fed up ciz my little one has been awaiting a diagnostic assessment now for nearly 2 years now. I feel really let down by CAMHs who they are also under due to social and generalised anxiety and emotional dysregulation. It's been a really tough old ride. Does anyone else feel their precious children have…

hello, I am a mum of 2 disabled children, my oldest is just physically disabled my youngest is non verbal and completely dependent, I cope very well with day to day life but recently I’m scared of them growing into adults I’m scared my oldest will be bullied and she understands everything and my youngest I worry who will…