So fed up, not of sen child but of the bloody system

[Perzival]

My ds is 13 and has many needs. He has severe autism, limited communication, sensory needs etc he is beautiful, charming and amazing.

Just had a letter through from a paediatrician review (gets seen yearly) and its wrong. New paed to us as ours left the service. It says he wakes up only once or twice and goes back easily. This is partially true some nights he does, other nights he's up 4,5, 6 ....... times. He's under sleep clinic and i dont want him discharged. Also gave wrong info regarding what dentist he's under and ds is waiting for a ga for dental treatment. The letter was sent to the gp for file.

Called the secretary to ask how to correct it and they said they'd ask him to check notes and if it's different then correct it but if it's the same not. Now, I'm worried I've started a chain of events and I should have just kept my mouth shut. I wasn't rude or anything.

Sleep is a major issue and we're lucky in that we have some pa hours etc because he doesn't sleep and he gets higher dla because he doesn't sleep. I'm now worried he'll be discharged from sleep clinic, he'll lose some of the dla and some pa hours. Why? Because I'm shattered and can't help but think the worst as it always goes that way.

Everything is always a fight, everything. It doesn't end and I'm just so tired and fed up of it all. My son is gorgeous and I love him, he isn't the issue. It's the reviews, paperwork, form filling, justifying everything he needs because heaven for forbid you ask for something he needs like speech therapy or ot. Tribunals, pre action letters. I'm just so fed up of it all. Ds is now settled in a school and he likes it (following tribunal) and for the first time we have PA's that take him out so we can have a little rest. I can't help but think that's all gone up the wall, not school the PA's.

Yes, my rational brain kicks in somewhere and says just leave it and wait and see but I'm now going through a million what ifs too.

Why do they make everything so hard. Sorry this is just a rant I needed I guess.

I get this. Non sleeping 9 year old with autism just been refused an assessment for an ehcp. Request was done by school and they don't request these lightly. 13 year old has been rejected from the autism/adhd assessment pathway, again it was school who made the referral. I adore my dc but the system is broken.

You can put in a parental request for an ehcp assessment yourself. The threshold for assessment is low but if the la refuse you, you then have the right to appeal. Ipsea and sossen are fantastic sources. Ipsea has pre drafted letters you can use. Get one in asap as they *should adhere to legal timeframes.

There's just so many hoops and then when you finally think you have your shirt together....

Sorry I'm just venting.

Have a little boy, similar sleep issues with ASD, not sure we've ever really had proper sleep since he was born.
Worn out and shattered so I can really relate.
Despite being so tired, you have to get up and battle the system again. It's a killer.

I've an appointment with a paediatrician upcoming and I'm hoping to ask re melatonin.
If I get a lecture about sleep hygiene, I might start screaming a little! 😂

Thank you. I will be definitely appealing. School said in their application that they have to support him 1-1 otherwise he does no work at all. He hasn't got 1-1 so the teacher and the class TA are running around like mad things trying to give him 1-1 some of the time while also making sure the rest of the class are having their needs met. He self harms in school and eats paper, both of which were witnessed by the lady from the access to inclusion team, who wrote that in her report too. I just don't get how the LA can refuse to even assess him tbh.

I get the impression that requests for assessment are routinely refused by the local authority. We appealed their refusal to assess for an EHCP for our son and it was overturned at mediation. From what I have read, lots of people have been through the same. It adds a lot of stress. The system is not set up to be helpful and it is extremely wearing.

As @Tiredstressed said many LA's refuse to assess. Most LA's are millions £'s over budget in regards to sen. Some LA'S are now on the 'safety valve schrme' where the government write off some of the defecit after x amount of years. The la have to agree to reduce debt and the only way they can do this is by taking funds from the higher needs block.

Only a parent can appeal for a refusal to assess and you have to do this within a timeframe. I believe you need to put in the request yourself so you have access to appeal (please check this with ipsea or sossen, it's been a long time for me). You should be given formal notification from the la of how you appeal when they decline the assessment with details of who foes the mediation for that la. You do not have to go to mediation if you don't want to (many LA's use this as a delay tactic). It sounds like your child will meet the threshold for an assessment.

When they eventually assess make sure you ask for info from any services you may need help from (likely salt, ot, Ed psych possibly dietician, incont service, social care (respite/ home adaptations- safety) wheelchsir services for mobility buggy).

You may find thst you end up back at appeal again if the info provided by local services isn't detailed enough. Don't worry this happens alot too. You may qualify for legal aid with the appeal which will help with inde reports.

The basic rules are:

1. Ot and slt are educational provision and must be in section b.
2. All needs must be detailed.
3. There must be provision to meet each and every need.
4. Provision must be written in a way where there is no doubt what must be provided. Who, how long for, where, when, how often, what qualifications, what training...

Have a look sen jungle and use ipsea/ sossen. Get your parental request in ASAP as they will delay.

Best of luck xxx

I'm still feeling like rubbish. I feel like I've finally got things sorted and then a bloody old Dr who has only met my son for half an hour throws a bloody spanner in the works. My husband says it'll be OK and I just need some sleep 🤣

Sleep hygiene.

Honestly I’d have lamped him one.

@elliejjtiny I forgot to say all educational provision must be in section f, so you can enforce it via Jr. If the wording is vague or it isn't in there, you have no comeback.

The amazing specialist school that I found for my daughter said they can’t meet her needs. I’m absolutely devestated.

@lollipoprainbow that sounds really hard. Have they said why or have they made any suggestions for somewhere that can?
@elliejjtiny you may have tried this but have you given melatonin a go? We're trialling it at the moment and he is sleeping through every night and going to bed without meltdowns. I cannot describe the difference!

@Amara123 thank you but we asked the consultant about melatonin when he was diagnosed and we were told he couldn't have it because she "didn't like to drug children" which made me feel terrible for asking. Then his social worker said he needs it a few weeks ago so I went to the GP who said it was normal for autistic children to need less sleep, gave a load of suggestions that we have been doing for years and said that medication wasn't necessary.

@elliejjtiny I think you've been getting bad advice. Emerging research that kids with ASD are deficient of melatonin.
I've another thread in here asking about what worked for kids with ASD and an awful lot of people found melatonin life changing for their child.
Take a look and there are other threads about where this is available.

@elliejjtiny my ds takes the liquid melatonin and also an antihistamine at night to help him sleep. Maybe try again, many kids with asd take it as sleep problems are common for people with autism.

@lollipoprainbow did they give the reason they can't meet need? Is there anything that can be put into place so they can meet need? There are only three lawful ones that can be given if an la school or one of the independent schools signed off by dep for education.

That being said if it is an la school they may have done you a favour as this would be good evidence as to why other similar schools can't meet need. If the la won't name because one of their schools can't meet need then another similar school can't either. Also if it's a special school that cant meet need it helps to rule out the la naming msinstream as if a special can't how do they expect a mainstream to? Have a look at other schools and see if there are any others including independents. Maybe expand the area you're looking at?

Have you asked the school what it is in the ehcp they can't do? If do can that need be met in a diff way?

Don't give up and keep looking. Good luck x

@Perzival no I've gone back to the LA to ask them to get feedback. There are only 21 spaces so didn't expect to get a place due to availability but more upset they have said they can't meet needs. I have the feeling they are picking and choosing who they give places to do which I guess is their right. Just so upset as it is right on our doorstep and appears to offer so much. Therapies, sen teachers, non uniform. All the things my daughter needs. I took my daughter to view and she was very anxious and clingy so I imagine she's not the clientele they are looking for. There aren't any other specialist schools for miles around and are full. Her final EHCP has said she must be placed in a special school and not mainstream which I suppose is a bonus but I feel so low and fed up with it all.

If it is a maintained school or one of the indes that the dfe have ok'd you could go to tribunal and try to get it named. There are only three lawful reasons for refusal. Id ask the school directly rather than the la. The feedback could be useful for other reasons if you do end up at tribunal.

Maybe give sossen a call xx

@Perzival it's an independent school that's just opened up if that makes a difference. LA said we can't appeal.

If it's an unde that isn't on the dfe list then yes they can turn you down unfortunately. I'd def get their feedback from them too. Keep looking at schools something will come up.

The LA have come back to advise the school felt my daughter was displaying too much anxiety when looking round the school. They have offered a her a trial half day to see if they can manage her needs. I don't know what to do for the best.

I haven't slept a full night in 25 years. As a baby she slept so little, never slept through as a toddler and was diagnosed at 2.5, gave up napping at 18 months. I'm just used to it, never got any help either as not enough points (she developed speech at 4 and is incredibly gifted) I get the frustration. She no longer lives with me and is semi independent but 22 years of her getting up reset my body clock!!

I cant even get help with sleep issues the Dr says it's all to do with "sleep hygiene" but ffs he DOESNT SLEEP I can have the TV on and he is quiet I can turn it off and he talks to himself for hours and hours upon end even when he does go to sleep he sleep walks and talks and runs but if I ask for help its try some warm milk (hates it) give him a bath (wets the bed after a bath everytime) make sure it's dark (screams) turn the TV off (talks longer)

Like? How long are they expecting me to live and care for him if I can't sleep?

You still have the right to appeal if the school put in the request so may as well just appeal that one. School have no right of appeal themselves

@lollipoprainbow give sossen a call and talk it all through with them. I guess you could start the appeal as Morph said above while you figure things out.

A half day trial isn't a long time and surely a transitioning period would be expected? I'd def talk to sossen and get some proper advice xxx