Feeling defeated

Hi there, I'm just wanting a rant really!! 

My 10 year old son was finally diagnosed with Autism in January this year (2019). I was really hoping things would get easier after this. I've found everything just seems so hard. I tried for DLA in the hope he would be entitled to middle rate care as I felt he fits the criteria and has the medical evidence to back it all up. I left my job to be able to pick him up for lunch each day as he wasnt coping with the full school day and for several reasons coming home is much better for him and has reduced his anxiety a lot. Due to loss of earnings I was hoping to be able to access carers allowance but he was only awarded low rate care and so i'm not. He has issues with sleep and I have a letter from his pead stating the prescription medication didnt work and sleep problems are on going and throughout the night he needs supervision. I've had letters from school supporting me in what I've told them about all the extra help he's receiving in school. He has an IEP but I was told by the dla that because he hasn't got an EHCP this is why he isnt entitled to middle. The process of applying for an EHCP has began and autism outreach have started coming into school. They no all of this but are refusing to budge. I have been waiting for an appeal for 74 weeks!!!!! I'm losing the will and am starting to think maybe I'm wrong and he just isn't entitled but at the same time so many other mums I know are receiving middle/higher for their children that are in similar situations and so it feels really unfair I'm not. I never wanted my sons disability to be about money but I am really starting to struggle financially and afford to run my car that I use to be able to bring him home for lunch. School tried a number of ways to try to keep him in school for lunch but his anxiety was so bad and his self harming that it just isn't an option. I'm frustrated with the whole journey. It took years to get a diagnosis as I was basically told by GPs that he was just naughty and attention seeking. Finally the right school staff got involved and have been a huge support and we recently had a new SENco who has been wonderful but it's all so late. He starts high school next year and I'm terrified of how he will cope if his EHCP gets rejected. I'm just exhausted and feel like just giving up. I know I cant for my sons sake. He's having some mental health problems and self image problems now also which is very upsetting for him. I'm at my wits end with the whole thing. I feel I have had no support in the past and I am so upset that I feel I have a child with a disability and difficulties and am basically left struggling and fighting a losing battle. I know so many parents are in the same situation and it's so not right. My son needs my support and care constantly throughout the day and into and during the night. I'm exhausted with caring for him along with my other 2 boys, worrying about finances, constantly needing to push and push at school and just life! My mum recently was diagnosed with stage 4 *** cancer also and tbh I'm feeling really overwhelmed. Oh and hubby has had his hours at work cut. It's really been a tough year or so. Just praying for a light at the end of this never ending tunnel. Sorry don't mean to be so negative and moany I'm normally an upbeat kind of person. Any advice and support would be greatly appreciated. Thanks so much. Xxx

Parents
  • Hi, I don’t have any amazing advice other that I am in the sane situation having been awarded low rate care for my child and awaiting appeal to hopefully get middle rate (64 week wait so far). It is incredibly frustrating. I do know though, that you certainly don’t need an EHCP to get mid rate if the care needs at home are demanding enough. My daughter does not have one because she masks at school and bottles it up until she gets home, therefore her care needs at school are not the same as at home. She is not behind academically as the autism does not affect her academic performance, but does in other areas. I think the appeals panel are a lot fairer than the individual decision makers (who seem to cite incorrect rules and restrictions the whole time) so don’t lose hope x

Reply
  • Hi, I don’t have any amazing advice other that I am in the sane situation having been awarded low rate care for my child and awaiting appeal to hopefully get middle rate (64 week wait so far). It is incredibly frustrating. I do know though, that you certainly don’t need an EHCP to get mid rate if the care needs at home are demanding enough. My daughter does not have one because she masks at school and bottles it up until she gets home, therefore her care needs at school are not the same as at home. She is not behind academically as the autism does not affect her academic performance, but does in other areas. I think the appeals panel are a lot fairer than the individual decision makers (who seem to cite incorrect rules and restrictions the whole time) so don’t lose hope x

Children