Why are we struggling so much with autistic DS?!

[sunnyfields25]

My DS is 5 (nearly 6), and DH and I are struggling so much more than I feel we should be. DS was diagnosed with autism last summer and with dyspraxia the Christmas before that.

Every day is an uphill battle and rather than getting better, each day seems worse than the one before. Every now and again we have little moments of happiness but they're few and far between. I find it so upsetting when I get the 'one/two/three year ago' photos pop up on my phone because it reminds me how happy we all used to be. DS's autism seems to be getting stronger/affecting him more by the day.

DD is almost 2 and barely gets a look-in. Everything revolves around DS for fear of him exploding, and is tailored to what we think he can handle without having a meltdown (which is not very much these days). And so DD just gets the dregs of our attention and energy.

I wake up every morning dreading the day ahead, and go to bed every night wishing I wouldn't wake up the next day.

I feel like such a failure to be struggling this much though, as I know that so many people have it much worse than we do. On the surface our problems don't seem too bad - DS is verbal and in mainstream school, and to an outsider it probably seems like there's nothing wrong with him. So why are our lives so awful?!

Sorry for the ramble - I only really have DH to talk to, but he's obviously stuck in the same boat as me and by the time the bedtime ordeal is over and all our other chores are sorted we don't have the energy to talk. I used to be able to moan to my mum but she's supporting other family members with health issues so I don't want to keep burdening her.

It was DH's birthday today and I'd tricked myself into thinking we might have a nice day, which was stupid as it's been just as horrible as all the other days.

Does DS take melatonin to help with his sleep? If not it’s worth asking about it. If he does there are other things you could try.

Does DS have an EHCP? If so, it sounds like you need an early review. If DS doesn’t already have one, have you considered applying?

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

A home OT assessment could help too.

Scope offer mentoring to parents of DC recently diagnosed.

Home Start might be able to support you too. For DD speaking to Sibs, and once DD is older your local young carers service, can be helpful.

I’m sorry things are so bad. What sort of things set him off or cause the worst issues? Do you think he has PDA?

A kid who is verbal and in mainstream may be putting a lot of energy into coping at school. Would also explain why things seem to be getting worse.

Explosive child approach might help.

I completely understand your position. I have 3 boys, 17,14 and my youngest who is 12 has autism/PDA and I feel your stress! I'm going through hard time at the moment too! My son is now school refusing he hasn't been in 6 months, he has for the last week refused to come out of his bedroom, he won't open his eyes as he says everything triggers him! From when he wakes up he's throwing and breaking stuff, shouting and angry, then the in the afternoon he switches, (still won't open his eyes or come out of his room) but he's happier. I feel like you that he seems to be getting worse.i will say though that he has been through these phases before and comes out of them when he's ready. My other two DSs like your DD don't hardly get a look in because mine and hubby's attention is swallowed up by our DS. It's so difficult isn't it? Some days I don't see a silver lining, but then other days I'm positive. You are not alone I'm exactly where you are right now. Lots of love and support ❤️

@FloatingBean - Nope I'm not sure that melatonin is needed as once DS is asleep that is normally it until morning (albeit an early start of 6ish). The difficulty is in getting through the bedtime routine and actually into bed.
He has an EHCP as of January, but the school are struggling to recruit the 1:1 TA specified in it. A temporary TA is hopefully meant to be starting next week so we'll see how that goes. DS briefly met her before school hols and told us he didn't like her. We haven't dared tell him she'll be spending a lot of time with him in the new term!
I've not heard of social care assessments so will look into that, thanks. Thank you also for the other practical tips, there are several things/services I haven't heard of so that's really useful.

@openupmyeagereyes - I have wondered about PDA but am not convinced. I don't know much about it but with DS if he's in a good mood, or if I approach things in the right way, he can be fairly compliant in doing things. I mean it's still hard work and I have to be careful what words I use, but still it's not as though he always refuses to do what we ask.
Lately he seems to be really struggling with anything unexpected, or with people acting in a way that he thinks is 'wrong'. So yesterday we visited a local pond to feed the fish with my parents. My dad suggested going up to the edge of the pond and dropping some fish food in, but because that's not the exact spot where we stood last time DS got quite upset and told my dad that wasn't allowed and he was doing it wrong and being 'nasty'. During the morning he accused my mum and dad several times of being 'nasty' because they looked at him in a way that he perceived as them not being friendly (they really didn't do anything wrong!).
We're also finding lately that standing firm and telling him 'no' about something, such as no more screen time as it's time to get ready, will cause him to explode. We're having lots of door slamming, cushion throwing, and on a bad day some hitting etc.

@SusiePevensie - Yes I have wondered if he's masking at school and then it's carrying over into life at home. Because he can have days that are good at school (although not so much lately) but then come home and have an awful evening where every little thing is an issue and he's unable to cope. Thanks for the explosive child recommendation as I'd not heard of that.

@Beckyleese28 - Thank you. I'm sorry to hear you're also having a rough time but it's comforting to know we're not the only ones! I am hoping it's a phase like you mentioned. Something that won't have helped is that DS has been under the weather with a viral infection the past week. We've noticed in the past that illness has a very negative impact on his ability to stay regulated and cope with daily life. Things weren't exactly great before that, but it's definitely got much worse the past week.

So sorry to hear that you are struggling so much @sunnyfields25

He does sound a bit like my DD and we often feel guilty about DS but we do find dividing them up helps. So maybe one of you could take DD to the park whilst the other one does something with DS.

The park visit sounds stressful and it sounds as though he might be overwhelmed. Have you already tried him with a Baseball Cap, sunglasses and ear defenders?

Nope I'm not sure that melatonin is needed as once DS is asleep that is normally it until morning (albeit an early start of 6ish). The difficulty is in getting through the bedtime routine and actually into bed.

My DD was awful at bedtime and still as a teen has terrible trouble getting to sleep. Melatonin helps them to drift off but won't keep them asleep so if your DS is not settling at bedtime but does eventually sleep, I'd say that it's definitely worth asking for it to see if it will help with bedtime.

sunnyfields25 I mentioned PDA as you said everything was a problem. If you’re having to word requests like they’re not a demand / making him think it’s his idea then it might still be a possibility and worth looking at. The PDA website has lots of information and strategies.

Regardless it still sounds like he’s very anxious with the wanting things to be a certain way etc. Regarding his reaction to how your parents are looking at him, autistic people often find it hard to read non verbal communication so you and / or school working with him on this would be useful. Lots of resources around to help, ranging from emoji type faces to real faces for facial expressions & emotions. Does he have any SALT input?

How is he getting on at school, is he struggling at all or does he seem to be doing fine?

Re. screen time, it’s an ongoing battle here too. Try and keep it as routine as possible with a visual timetable (if that helps) and a visual timer to countdown the time. Have something that is exciting, if possible, or at least enjoyable, to help him transition away from it.

On their website Contact have model letters you can use to request social care assessments.

If 1:1 is specified and quantified in F it must be provided. If the temporary TA doesn’t appear email the Director of Children’s Services (it is the LA with the ultimate responsibility for ensuring provision is provided) threatening judicial review.

Does the EHCP include any therapies - SALT, OT (including sensory OT), MH therapies? Does it include using anything like Zones of Regulation?

Some people find Yvonne Newbold’s VCB resources helpful.

Thanks everyone, there are so many good tips on here, and information about services/approaches that I've not heard of. I really appreciate people taking the time to reply as it reminds me that it's not just us stuck in this situation, and there might be other things we can try to improve matters and help DS.

@SiouxsieSiouxStiletto - It's funny you should mention ear defenders as we actually just bought some for DS last week. I was kicking myself for not taking them out with us at the weekend! We've not properly used them yet but DS tried them on yesterday evening and seemed to like them, so we'll have to take them out with us next time. Sunglasses are a good idea too.

@openupmyeagereyes - That's interesting about PDA as I just assumed it couldn't be that, but I'll have to do some more reading. He has a SALT assessment as part of the EHCP process, and since then a SALT has done some training with his teacher and made some recommendations. I definitely wouldn't say he's doing fine at school, but he has some good days and some awful days. The awful days are mainly him lashing out at other children, I think partly because he misinterprets their actions and partly because he struggles to handle his emotions. Bizarrely though we had a mainly horrible school holiday and then he's had a great first day back at school! Waiting for it to all come crashing down tomorrow.

@FloatingBean - Yes the EHCP specifies some OT input, but we are still chasing that 3 months later. He's already had sensory integration therapy last year, so this is more OT input to advise on adjustments at school. DS's teacher is using the Zones of Regulation chart at school and we have it up on the wall at home too, and DS responds well to it, voluntarily telling us what colour he is sometimes. The temporary TA was meant to start this week but she'll ill so we've been promised she'll start next Monday. It's all been awful timing as the EHCP was finalised just before the existing head left and a new one took over, which has caused big delays in getting things happening.
Thanks for the mention of Yvonne Newbold’s VCB - I've had a quick read of the basics page on her website and it's great, I can relate so much to what she says. Especially the bit about needing to stay calm and pretend to be fine during a meltdown, because I've definitely noticed DS reacts badly to us showing emotion (eg raising our voices) when he's worked up. It's so difficult to not do it when I'm exhausted, stressed and watching him trash the house! But I know it makes it worse.

Is the OT specified and quantified in F as it should be? If so, email the Director of Children’s Services threatening judicial review as they are in breach of s.42 of the CAFA 2014. If that fails contact SOSSEN for help with a pre-action letter. However, it sounds like ongoing direct therapy is required so as part of the early review you should try to get this included - also SALT and MH therapies.

Personally if the 1:1 is specified and quantified in F I would also be threatening JR for failure to provide the 1:1.