Really struggling with 7 year old DS

[senmommastruggles]

DS is diagnosed ASD and we are awaiting an ADHD assessment. He has quite a lot of sensory processing issues too. Up until about 6 months ago things were fairly easy to manage, he would have meltdowns and get aggressive etc but it was fairly rare and he was easy to calm down. Since starting in year 2 it’s been a whole different story, he’s finding school really difficult to manage and is constantly in trouble. He’s then coming home so disregulated that we are just having constant meltdowns.

It’s got to a point that every little thing is making him angry every day and it takes sooo long to calm him down. He lashes out constantly and I have to have eyes in the back of my head to make sure he doesn’t hurt his sister or cause too much damage to the house etc. Even planning days out that he would normally love have become hard work because he gets too overwhelmed. It’s like he’s in a constant heightened state from school so any little thing that normally wouldn’t faze him is triggering him.

it doesn’t help that I’m basically dealing with it on my own because DH is also autistic and the two of them clash so much that DH is no help in situations at all. I’m just feeling really sad to be honest, I don’t know what I can do to make things better for DS and I know he hates feeling like this as when he’s calm he often cries and asks why he feels different to other people. I’m also exhausted.

Anyone been through similar and got any tips?

I could have written your post a few months ago!

sending unmumsnetty hugs as it’s so so hard & draining.

I can only comment on our own experience but after additional support in school , reduced timetable various therapeutic support what has helped our ds is not being in school.

Naomi Fisher is really helpful

happy to PM with more details if it would be helpful.

melt downs have gone from multiple a day , extreme violence & destruction. To one every 2 weeks or so.

not an easy or ideal option but living in a war zone is soul destroying.

we are waiting for tribunal day challenging LA decision to name mainstream in EHCP.

try & prioritise yourself in some way at least once a day. I ended up off work sick for a while. It’s tough.

edited for spelling

Thank you so much for your comment, and sorry you have also been through it! A PM with more details would be great please. At the moment the school have said they don’t know if he will
qualify for an EHCP but I’m not sure how he won’t as he refuses to do work most days, he will just sit in a corner and not interact with anybody. He also can’t do transitions so won’t come in from break times etc. then when the days have been bad the evenings are awful, it’s so draining!

Also been there/am there!

as pp help in school has helped my DS calm massively.
a long fight for his EHCP and he's been amazing since getting it.

is he on the Sen registrar at school?
if school won't apply for EHCP, do it yourself: don't wait around for them.

what is your typical routine after school?

Ignore the school saying they aren’t sure DS will get an EHCP. You might have to appeal but DS meet the legal threshold. Sadly, some schools incorrectly tell parents their DC won’t get or don’t need an EHCP. Has an EHCNA actually been requested?

What support is the school providing? What have they already tried that hasn’t worked? Have you met with the SENCO? The issues at home are stemming from unmet needs at school. If school was easier, home life would improve.

Has DS had a sensory OT assessment? Do you have any sensory toys/equipment at home?

What about a home OT assessment to look at making the house safer and better meet DS’s needs?

Some people find The Explosive Child and the Out of Sync Child books helpful.

How are DS’s sleep and eating?

@ExistingonCoffee no an EHCNA has not been requested, all I know is that they have requested and Ed Psych come and see him at school.
We have never had an OT assessment, I’m not even sure how I would go about getting that?

DS sleeps with me as he won’t sleep in his own bed, he takes melatonin as it can often take me a couple of hours to get him to sleep, he has lots of meltdowns over going to bed. He’s then up a lot through the night with things like his covers not being in the right place, pillows not feeling comfy etc and I have to settle him all over again.
Eating is also a bit of a nightmare, he basically eats a beige diet, chicken nuggets and chips, crackers, bread and butter and plain pasta are his safe foods. He will sometimes try something new, becomes obsessed with it for a few days/week then won’t ever eat it again.

Request an EHCNA yourself. You don’t need to wait for an EP assessment first DS. On their website, IPSEA has a model letter you can use.

You can request an OT assessment yourself. A google might show you who you need to contact. If you can’t find it for your area, ask your GP.

Not all ICBs, commission sensory OT support, but even if they don’t it is still worth looking at OT. And even if they don’t a sensory OT assessment can still be part of an EHCNA and sensory OT provision part of an EHCP.

Does DS take immediate release melatonin, prolonged release or both? Has he ever tried anything else to aid sleep either as well as melatonin or instead of?

Have you looked at ARFID? Has DS ever seen anyone about it?

@ExistingonCoffeethanks, this is all really helpful!
He takes the prolonged release melatonin, and is currently on 2mg I believe. We’ve never tried anything else as that is what he was prescribed by the paediatrician 2 years ago.
I’ve never looked in to AFRID but I will do some research today.

I would request a referral either back to paeds or to a sleep clinic to look at trying something else as well as prolonged release melatonin or instead of. There are lots of other things that DS could try from the fairly simple to the more hardcore if necessary.