Support needed . Is EHCP warranted ?

[BlueIris111]

Hi Guys ,

My DS just started primary school this year and had been diagnosed Autistic with globe developmental delay and speech and language delay the year prior to starting school. He turned five soon after the school year began and started school on a part time , time table which he has never come off because he keeps falling asleep in class. I feel completely and utterly lost his school attendance is at 50% and I feel like I am at breaking point. I’ve not been able to return to work since the school year started and I’m just really tired anxious and worried about my son.

The school is very worried about him falling asleep in class as it’s so often and he can’t be woken up no matter how hard they try. My DS at the start of the school year was going to bed 8pm every night and I would have to force him awake at 8am every morning while he cried. Now with all the naps at school he won’t go to bed at 8pm anymore and his sleep it all over the place. I can’t wake him either if he goes down and feel completely powerless.

I approached the doctors in September who said it’s because he is autistic and needs to get used to the change . I said this to school. The school were not satisfied and I then asked them to write me a note for the doctor after the second time of returning to them because the doctors saw no issue they said his vitals were fine and they didn’t want to put my DS under the stress of a blood test. Third time I went back with the school letter ( this was end of October ) and they agreed to do blood tests which I was releived about but I didn’t realise they couldn’t do it and the first appointment for paediatrics to do his blood at the time was over a month away. He has his appointment this Thursday. I’ve also asked the doctor if my son can be referred for sleep apnea testing as he crawls all over the bed at night , his breathing is a little heavy but no choking . He also sleeps with his mouth wide open and sometimes stops breathing for a minuet. So I’ve been wondering if this is what’s going on but they said they won’t refer him unless his bloods are normal.

School suggested I refer myself to the school health service for sleep support but I must admit that was rather disappointing and the PowerPoint not helpful. I re referred myself and the school nurse couldn’t offer personal sleep support but did contact the school to tell them they aren’t allowed to keep my son if he is sleeping and to send him home straight away. Where before he would sleep between 10 minuets to an hour and have access to learning after . Now there’s no learning. I have approached the school and asked for him to be referred for an EHCP as I think he might need more support and a 1:1 which he currently doesn’t get. They replied with they can’t do that because they apparently give enough support and he doesn’t warrant any more support . I’m confused though because how do you know if your supports enough if he barely accesses any learning ? I’ve read apparently his sleeping could be anxiety of not having needs met . I don’t have this problem on school holidays he never naps but then I allow him to sleep as long as he needs but even then if we compare the 8-8 sleep on holidays he would sleep less than that and not nap during the day. So I’m wondering if he isn’t coping with the environment but without EHCP I can’t move him into a Sen school. I’m wondering if I need to hold my hands up , give up and home school him but I’m not sure I’m in a position to do that. The idea scares me and I’ve never done it before but I’m so worried about him , he barely has any quality of life right now . We used to go swimming and do other activities after nursery which he loved and now we can’t do them in fear he will sleep in the car and not get to school the next day or he’s sleeping the whole of the weekend and up at nights now and it’s a struggle to now readjust his sleep clock.

Im not sure what I want do I try and get an EHCP myself from the council , do I wait for the blood tests and see if anything comes of it or should I just put my hands up say we have it a good shot and home school him. I’m a Sen teaching assistant for primary age and usually work reception to year 3 so it’s not like I don’t know the curriculum it’s just a difference transition and I’m frightened I won’t be enough.

Thankyou for taking the time to read this please feel free to ask any questions. My DH is around he tries to help as much as he can but he works full time and sometimes overtime to make up for me not being in work at the moment. We get support from family so if I were to homeschool we would be able to manage.

additional information about DS is that he is in nappies at school but not at home because he can’t take his own trousers off and he won’t use the toilet with anyone other than family. School health team want him going into school in boxers even if he cant take his trousers off himself to force him into the habit of using toilet at school. I’m anxious about trying this and a tad reluctant. If he could speak I wouldn’t have any issue and would gladly do it but he has no way of verbalising that he needs support removing his trousers. I’m working on trying to help him learn this skill but he’s still behind. He can’t take say single words but isn’t saying sentences yet and won’t speck to strangers. He also gets overwhelmed in busy places and instead of having a meltdown like other autistic children do he tends to lie down almost in protest. He won’t thrash and cry unless the overwhelm is extreme and then he will also self harm by hitting himself or hitting his head on the floor behaviour but they’ve not seen this at school.

100% he needs more support at school and you should try to get an EHCP. Home school may work for you short term but isn't likely a long term solution.

You should also ask school if there is an autism outreach or specialist teacher that you can get support from.

Re toileting. Can he pull any trousers down? If you sent him in trackies, could he be independent using the toilet? This would be a reasonable adjustment, and better for him than wearing nappies.

Do you want him in for only the mornings? Or is school forcing that in you? How is he getting on at school when he is awake?

Yes, request an EHCNA yourself. On their website, IPSEA has a model letter you can use. I wouldn’t wait for the blood results. Whatever the results, the request is a good idea. Even if DS wasn’t falling asleep, an EHCP is still required. DS isn’t receiving enough support. Personally, I wouldn’t deregister and electively home educate.

Alongside this, I would push back on the GP for a referral to paeds. That needs to happen whatever the blood tests say. Is there more than one GP in the practice?

You could think about trying melatonin to help DS get back into a better sleep routine. Most GPs won’t prescribe this without it being initiated by paeds/CAMHS. You could ask for a referral to a sleep clinic. In some areas, these have shorter waiting times than paeds.

Sleeping can sometimes be part of the response to stress/overwhelm. It can be part of the shutdown/freeze response.

What is DS like if the school tries to keep DS awake when he is looking tired?

If DS is OK at school after a nap, he can stay at school if you want him to. I would push back on this.

After Christmas DS will be compulsory school age, so separate to the EHCP process, if he can’t attend school full-time, the LA has a duty to ensure he still receives a suitable full-time education.

That’s you the response I will see if they have a specialist teacher. He can’t pull any trousers down at the moment unfortunately. With regards to his time table he is supposed to be in three full days and two half days and on the half days he’s in mornings only . I’m thinking though we might be more successful if he had later starts but it all depends on his sleeps I’m having the problem at the moment where he is sleeping from 1 till 12 at night and going to be just before school or sometimes I manage to break it a bit and he gets up at 2 or 3 but then he falls asleep sleep around lunch time and I get called to pick him up again. His sleeps completely all over the place right now.

when he is awake he is sluggish and engaged well with play but not work. I’ve seen his school books recently and there’s nothing in them so it doesn’t look like he is doing any work. And in his home book reader they usually say he listened to the book and struggled to engage.

Thankyou for the response. I agree with you I wasn’t very happy that they didn’t want to make the referral unless the bloods were clear. There are other gps in our practice so I will see if I can see someone else and get a sleep referral. It’s so frustrating how long everything takes and I’m just praying I don’t end up with a fine for his attendance at some point. I will also see if we can get the sleep referral and look at getting trying to get melatonin.

with regards to keeping him awake they say he leans on things and staff and keeps lying down and rolling on the floor with his eyes fluttering. He won’t stay a wake and keeps finding ways to go to sleep . I have this same issue. It’s been insane to me that sleeps even become a problem with him because he’s always been the child you was easy to put to bed. He won’t sleep unless he is tired and when he is he will sleep. My DD on the other hand is absolute opposite we’ve always had sleep struggles with her but she doesn’t fall a sleep at school and is doing well which makes me think he’s either really overwhelmed like you say or something else is going on.

thankyou before he was at school longer as they let him have the naps and he engaged when he was awake but the school health team they told me to refer myself to spend more time complaining about how the school has been allowing my DS to sleep at school and not sending him home immediately rather than giving me support so now they send him home and won’t have him. It’s had me feeling completely lost and overwhelmed. I’m so worried about how he is going to cope with year 1 next September when he isn’t even coping with reception. I will apply for EHNCA and hopefully we can get the ball rolling

The absences should be authorised so shouldn’t lead to fines/prosecution once DS is compulsory school age.

If you want DS to remain at school, push back on the school sending DS home.

Actually I would just hold off for blood tests to see if there's a medical reason that is sortable - for example, hypothyroid.

If bloods come back clear I would request EHCNA.

Regardless of bloods, OP’s DS needs an EHCP. It isn’t just the sleeping. Even if the sleeping issue didn’t exist, he would still need an EHCP for his other difficulties.