Help with dla and school

[Spurs1987]

Hi I was hoping for some advice or maybe just hoping a rant to other sen mums might do me good. I'm having a nightmare lately. I can imagine I'm not the only one. My 10 year old son has been diagnosed with asd. It's been a long road. Currently due to how bad he was coping at the beginning of the school year I began picking him up for lunch everyday. He doesn't wear school uniform and wears a thick coat all day in order to feel safe despite the hot weather. I am still waiting for an ehc plan to be applied for and tbh I feel like I'm losing my mind. I feel like by picking him up for lunch everyday I'm helping him to cope easier which is good for now but I can't realistically do it much longer. It seems a viscous cycle of if I help him they wont but if i dont he just suffers. The dla have awarded him low rate care which I disagree with as I had to leave work to be around for him. He needs help with everything. He wears his own clothes at school and refuses to get changed for p.e but they dont see it as this child needs help dressing they see it as problem solved therefore he doesn't need help. I asked for a mandatory reconsideration and the senco wrote a report for me to send to them. I rang and specifically asked that they dont continue until they recieved this report. They did their reconsideration anyway on the 6th. I rang straight away when I got the letter to say I asked for you to wait!! i mean the report was sent just over a week ago 2 days after I requested the m.r over the phone and asked them to wait. They did the m.r on the 6th and received the report on the 7th 😫 someone is supposed to be calling me back. I've reached my limits with it all lately. I feel like no ones listening or helping my son. I'm so tempted to take him out of school and stick 2 fingers up but I know deep down that's not the right choice as he is academically very bright. I cant cope much more. I go in school and say over and over and over again what his needs are and get oh but he's so much more settled now. Yes he is but only because unrealistic strategies are in place. I dont see my son sweating all day in a coat as being settled. I feel like I'm literally losing my mind like I'm the only one that can see his suffering. Any advice please I'm at the end if my tether with it all.
Thank you xx

Hope someone comes along soon with useful suggestions. I really do feel for you.

Been through similar. All I can suggest is put it in writing to SENCO and ask for meeting with them and head teacher. Does he get any TA time? There should be support for the coat thing. Its a common help with dressing issue that kids under/over wear clothes due to sensory or emotional needs. Maybe something like a weighted blanket or lap pad would give the safe feeling?

Do school have SEN meeting with you

Do they apply for top up money over their 6k school SEN budget per child? Usually a LA will have such funds which can be applied for by school.

Hugs. You'll get there. Its a marathon, so keep yourself looked after too. With persistence you will get to where you want to be. Just p

pisses me off that their childhood goes by whilst we have our heads stuck in paperwork and fighting for their rights to be met

Yes definitely I think that's the hardest bit to accept. Feels like life has been on hold for the last 2 years especially. I have 2 other sons and I feel we've missed out on so much quality time.
I have met with senco several times about the ehcp and his needs in general. I feel she is supportive and listens but his teacher is very flippant about things. I just get yes he's fine, hes done well bla bla but although it appears that way, it's quite obvs by the look on my sons face that he's had a rubbish day lol. He has settled a lot due to me collecting him for lunch and the senco is worried that if the process was to start now they might not observe what they need and so it's best to wait till the next school year as we know he won't be so settled and the problems will surface again. I have asked if it's best I dont pick him up anymore and they have said no. He refuses to go to school at all then and i literally have to chuck him in the car and get him there in his PJ's. I dont really want to go back to that but I have no clue what to do for the best anymore. He only has 1 year left until he goes to high school and without the ehcp he wont cope for sure.

Feel like packing up and taking us all off to live on an island where we can just live without all the stress lol. Not possible I know but it's good to day dream lol.

Thanks for your reply.

I understand how gruelling and frustrating it all is, and don’t blame you at all for feeling like removing him from school In your position, I would apply for an EHCP on my own - Ipsea has a lot of info about how to do this. From what you’ve said, he meets the legal test or he has sen and requires additional Sen help to access learning, so the LA will assess him. Sending you power and strength to get through these tough times

Thanks so much.
I have also thought about doing it alone and will look into it further thanks for the info.
The dla situation just boggles me. They said he only needs care for upto 1 hour per day that's why he was awarded lower but the information sent in clearly shows he needs more than that. I pick him up for an hour a day that's without everything else???
We asked for a mandatory reconsideration and they didnt wait for the report from senco despite me phoning and asking them too and now the reason for their decision is, although they acknowledge he needs support throughout the day he doesn't have 1-1 support therefore he's still entitled to lower rate. My fiancee rang and asked what is the criteria for middle rate and he was told that in order to be awarded middle he needs to be having help with bodily functions for more than one hour a day. The information clearly states he's having that help???? Not a clue. Now its he needs 1-1 throughout the day???? Im Even more confused. Is that correct and we are wrong to disagree or should we be awarded middle rate? Sorry I know I sound like I'm losing my marbles lol xx

Just to say the priority is the ehcp but without financial help I wont be able to keep picking him up at lunch anyway I'll need to be back In work. I'm going to citizens advice asap but I've found myself sitting here with it all going round in my head and so have came on here for advice before I loose my marbles lol. Thanks for your replies they are very helpful. X

Frequent help of 20 minutes or more during the day and night or extra supervision during the day and at night - middle payment

From Scope webpage

I would appeal again, just check how much time you have to do this - there is often a specific window like 3 weeks xxx

Is he disturbed at night? Does he need help with going to loo or bed changes? Do you need to spend over 20 mins during night to help him? Settling to sleep in evening counts as day time care. Night is when everyone is normally asleep in the house e.g. 11pm to 7am