Help with ds age 8 asd

[TheVolturi]

Hi everyone, I am hoping someone can give me some hope /advice. My son is 8 and was only officially diagnosed in January. He is getting much much harder work as he is getting older, and I really feel like we are alone! He has such huge meltdowns and will hit me and his siblings, if I'm honest it can be hard to hold him off as I'm only small and he's really strong.
He does not sleep well and has been given melatonin, which helps him fall asleep but doesn't stop him waking in the night. When he wakes at night he goes to get me or dh. If we don't instantly wake up he starts banging and wakes the whole house up, it's like he's mad that he's awake and he wants everyone else to be awake! I end up sleeping in his bed virtually every night and it's not great.
He hates leaving the house, it's such a battle to get him to agree to come out to do anything, and it has meant that his siblings have missed out on things lots of times, dh works 6 days a week so I'm mostly on my own. I am just getting really worried that he's going to be too much in say, a couple of years, if he carries on like this.
How do people cope?
He's actually quite high functioning, extremely clever and talks very well but small things like getting dressed, picking own clothes out he just cannot do. Needs help after using the toilet because he doesn't know when he's clean after wiping so keeps on wiping until the toilet is full of paper and then gets so stressed.
School have said he seems to function OK there, but he comes out and explodes. And now he will have yet another new teacher in September and it's so draining trying to make sure his needs are met. School have actually been rubbish to be honest.
Can anyone give me some hope please

Hopefully bumping!

Is DS on immediate release or prolonged release melatonin? Have you tried increasing the dose?

Would a SN buggy help with leaving the house? DS1 also hates leaving the house but finds trips out slightly less overwhelming when we use ours. DS could then hide in the buggy when it's too much and if he has a meltdown it is easier to go somewhere quieter.

Have you had social care assessments? A carer's assessment for you and an assessment via disabled children's team for DS.

Does DS have an EHCP? 'Coping' at school then exploding at home means there are unmet needs at school despite the school saying he is fine, they just aren't seeing the signs.

Has DS seen an OT?

Do you have a young carer's service locally?

Apologies for all the questions, you don't have to them all here.

Thanks for your reply! No he has had no assessments since his diagnosis. I asked the school senco to do a needs assessment and she said no need 🙄. He definitely wouldn't go in a buggy he would go crazy if I even suggested it unfortunately. There is an autism charity a couple of towns away that I have discovered and they do some workshops, I have emailed to find out how we access it. When school reopens I am going to ask about the assessment and echp, but they really make me feel like I am being a pain! I am hoping the autism charity can signpost us to some help, but it really feels scary.

And the tablets are the slow release but we were specifically told to crush before giving to him?

By crushing the melatonin tablets they are no longer prolonged release.

You can apply for an EHCNA yourself, IPSEA have a model letter. Don't let school fob you off. What you describe is all too common. DS holds it in all day and explodes at home, it is often described as the coke bottle effect. Schools are mostly rubbish at recognising masking. As part of an EHCNA you can ask for an OT assessment. Depending on your area you may be able to get a sensory OT assessment even if you don't apply for an EHCNA, unfortunately not all CCGs fund sensory OT anymore.

You can ask for social care assessments, too. If you do apply for an EHCNA an assessment for DS should be part of it.

Thanks for all the info, it really does seem so daunting! Surely parents with a child with a diagnosis should have help and guidance, not be just left to it? There is so much to take in.

Given covid, did you have an in person assessment? Did you have any SALT input prior to the assessment? They are often a good route to any support on offer. You can also look on your LA’s local offer page to see what services are available. You might be able to get onto an early bird type course - there’s a school age one but I can’t remember the name off-hand. Our LA runs its own version of these but the NAS run them for some LA’s I think. There’s usually a waiting list though.

Try and give ds the tablet whole, it’s not meant to be crushed.

Yvonne Newbold has a Facebook group often recommended here for violent & challenging behaviour. Good books are the out of sync child and the explosive child.

I’m sorry things are difficult. It sounds like he still needs a lot of help with things at home if he’s struggling. Don’t worry about what you think he should be doing alone at his age as the normal rules don’t really apply

The school age equivalent of earlybird is earlybird plus.

An alternative course is Cygnet course, I think you can search for that course on Barnardo's.

@openupmyeagereyes

Given covid, did you have an in person assessment? Did you have any SALT input prior to the assessment? They are often a good route to any support on offer. You can also look on your LA’s local offer page to see what services are available. You might be able to get onto an early bird type course - there’s a school age one but I can’t remember the name off-hand. Our LA runs its own version of these but the NAS run them for some LA’s I think. There’s usually a waiting list though.

Try and give ds the tablet whole, it’s not meant to be crushed.

Yvonne Newbold has a Facebook group often recommended here for violent & challenging behaviour. Good books are the out of sync child and the explosive child.

I’m sorry things are difficult. It sounds like he still needs a lot of help with things at home if he’s struggling. Don’t worry about what you think he should be doing alone at his age as the normal rules don’t really apply

Yes he had in person assessment as the whole thing was going on since before covid, however he had to have a video social communication assessment. I can't understand why I was given instructions to crush the tablet, it's been such a hassle as he hates the taste, and then to find out that this is wrong is quite frustrating!

Possibly it’s because many children refuse to take a tablet and it has to be hidden in food. Or if they need more help going to sleep rather than staying asleep this is a better option as it allows faster release. My ds took the tablet whole with no problems (we weren’t told to crush it). It didn’t stop his early waking but hopefully it will work for your ds.

Newly diagnosed dd9 here too! It's so so daunting and so much to take in, I was referred to enabling families and have been given a support worker for four sessions. It has been invaluable and so helpful, it's a hour long phone call with a support worker and they offer guidance and advice. My dd school hasn't been at all helpful and the sen team useless. They refuse to do an ehcp so I am planning to apply myself.

Have you read about PDA? Your son sounds similar to mine ....
it’s really hard work due to major anxiety and control. Low demands help....
I’d advice you to do EHCP yourself - we are heading for tribunal and we started the process in Feb.
I’ve got no advice but it’s bloody hard work and makes you isolated especially if you have other children. ps you can get liquid Meltonin but it’s expensive at £152 per 100ml that’s why they prefer to hand out tablets x

Sorry pp's I didn't see that there were more replies. It's so hard isn't it after diagnosis, it's like, yep, off you go! There really needs to be more support. It's really wrong that we have to do all the research and apply for things ourselves, I'm really worried that my boy is about to go into year 4, high school will be upon us before we know it because time flies, and he really will need support in place by then.
I have not looked at pda but I will now.