Published on 12, July, 2020
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
Hi thanks so much for your reply. I rang them again yesterday and they said I should recieve a date very soon as theres been activity on my referral. My son was referred to cahms 2 years ago but they reffered him back to pead. I'm seeing the gp again next week so will ask to be reffered again. I gave the dla so much info. We applied originally 4 years ago and was awarded high rate, then when we renewed we were awarded low rate although his care needs had only increased. Feels like they are out to get us honestly. We have so much more evidence and information along with official diagnosis since then it's just bizarre. I feel like a cheat honestly. They wanted evidence of absolutely everything which I have provided and yet it still isnt enough. Ppl have said to me it must of landed on the wrong desk!!! I cant see how I can be in position where I genuinely had to leave my job for my sons needs but dont qualify for carers allowance. It's crazy. I never wanted to be about money but I'm really struggling financially and cant work. Evenings arnt an option as he hates it if I'm out at night. He gets beside himself. It is frustrating. I can cope with my son but I cant cope with the constant let downs. 1 step forward 2 steps back is how it feels. Xxx
74 weeks?! That's ridiculous. Is there any way to chase this up? Have you asked your GP for a camh referral? They could probably help you with your son's mental health and see if he can take anything for the anxiety. My son is 15 now but was a late diagnosis. School referred him to the school doctor when he was around 10 or almost 11. They noticed he was struggling in school and I had a feeling he was showing autism traits. We were about to move house and the doctor said he knew my son had autism along with auditory processing disorder and anxiety but didn't want to diagnose him by giving him a lable. He said when my son goes to secondary school see how he is then (son was near end of year 6). When my son joined secondary it was a nightmare. He just couldn't cope at all. And to top it off another child tried to throttle him for no reason! My son refused to go back in. This was 2 weeks into the new school year. He was at home for a year while I looked for another school. Eventually found one after threatening the council as they kept saying no to the school I wanted (I was told they were a good school with a SEN section). Anyway he got in but again struggled to cope and started staying at home again a lot. They managed to get an ehcp and then soon after he refused to go in. He was at home another year but luckily a new special school opened nearby. He's doing wonderfully there and the best school ever. He still misses days. Then first year 2018 he only did a few hours and never stayed for lunch. He would do mornings and afternoons on two other days. Sometimes he would go in for an hour and a half. Fast forward to this year and he's managing to go in full time!!! And its all down to the support of the school. My son still has days he just can't face going in and days he can. There is light! If your son can get an echp then he can join a special school. Only 7 other children in my sons class, a teacher and 3 helpers.
I am claiming DLA and carers. Got it straight away and middle rate. Now panicking as got a letter today to say we have to apply for PIP next year! I don't know what you out in your forms but you need to make sure you out in as much as possible about your son's struggles and his worst day. In think camh is a good route to go down and adds support to your claim.
I totally understand where you're coming from. I've shed a lot of tears. Not only of sadness but frustration too. I know my son will forever be in my care and I feel sad for his future. But I try to be positive. Another source of support I had was ringing the people on this website. We no longer have them as they struggled to help us due to my son refusing to seeing them and he wasn't able to speak to him due to selective mutism. But worth a try X
I was just thinking. What helped me get things across at school was to do a recording of my son. He was really distressed and screaming how he's done it all wrong and he hates himself and he's rubbish etc. He also is doing well academically and bottled it up. He also will tell his teacher he's ok with things even if he isnt. It's really difficult as a parent to make school understand actually they arnt coping to well. I found the recording helped so much. I had a meeting with the head, SENco and family liaison where I played it for them. It was horrible to do. I was shaking like a leaf but it definitely helped them to understand and they where all very supportive. Luckily the same week i had my first meeting with autism outreach so SENco told me to show her and she said this is clearly a child that isnt coping socially and emotionally at school. Without the recording i dont think things would be moving so well now. I hated doing it and felt so bad for my son but I felt I had no choice in the end. My son was threatening to hurt himself all the time. Everytime I tried to say how difficult hes been at home i just got. "Well hes fine at school" very frustrating lol.
Fingers crossed for you and your daughter and I hope you both get the support you need. Xx
Thanks so much for your reply. Yes it is so frustrating. I rang them today actually and asked am I any closer. They said I should hear imminently as I have gone over the wait time and I am with the listing people. I'm so hoping to win. I dont know how much longer I can continue being there for my son if I dont.
Also today I found out the SENco had told the teacher last year to do my son an IEP but he didnt do it!! I recently signed the one he has now with his new teacher and she couldn't believe I'd not seen the documents before!! Honestly you cant trust anyone. It's such a battle!!
I wish you luck with your appeal and I hope you get it soon also. Thanks again I feel more positive now.
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
Hello Lewishad,
Sorry to hear you and your family are having a tough time at the moment.
I’m not the parent of an autistic child, so I can’t give you first hand advice, but NAS does offer a parent to parent service which you can find here. The NAS helpline can be found here. This blog is written by a UK Mum of autistic twins. She has been blogging about her twins’ difficulties for 5 or 6 years now, so it may be worth looking through her posts.
If there is a parent/child group near you, it may be an idea to join. It is always good to talk to someone in a similar situation.
You can find out what your rights are with regards to your son’s education from the following links.
https://www.autism.org.uk/educationrights
https://www.autism.org.uk/services/helplines/education-rights/legal.aspx
http://researchautism.net/autism/children-and-young-people-on-the-autism-spectrum/rights-children