Primary School Auties 10: Summer and beyond 2022

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Thread 10.

Ooops, sorry, filled up the last thread without noticing - here we are at THREAD 10!! (How did that happen?)

This is a thread for the parents & carers of children with additional needs. Most of us have autistic/ADHD children in primary school, but anybody is welcome to join us to chat x

Links to previous threads below.

Thread 1
www.mumsnet.com/Talk/special_needs/3080753-DS-with-ASD-starting-school-Sept-2018-I-am-feeling-overwhelmed
Thread 2
www.mumsnet.com/Talk/special_needs/3451020-Reception-auties-2018-19-thread-2
Thread 3
www.mumsnet.com/Talk/special_needs/3628263-Auties-transition-to-Year-1-thread-3
Thread 4
www.mumsnet.com/Talk/special_needs/3748449-Primary-school-Auties-into-2020-thread-4
Thread 5
www.mumsnet.com/Talk/special_needs/3953023-Primary-school-auties-summer-and-beyond-thread-5?pg=1
Thread 6
www.mumsnet.com/Talk/special_needs/4166833-Primary-school-auties-spring-2021-and-beyond-thread-6?pg=1
Thread 7
www.mumsnet.com/Talk/special_needs/4303826-Primary-school-auties-summer-and-the-new-academic-year-thread-7
Thread 8
www.mumsnet.com/Talk/special_needs/4422100-Primary-school-auties-step-into-Christmas-and-the-New-Year-thread-8
Thread 9
www.mumsnet.com/talk/special_needs/4502988-Primary-school-auties-thread-9-spring-summer-2022

Susan I just read a book called ‘Why can’t we just play’. It’s not about neurodivergence, just about slowing down, but a lot of wisdom in it and good fun. She said ‘Throughout most of his life, whenever we did something fun together, it was because I was doing what he wanted to do.’

How long are you away for? Looks like you’ll have good weather. We go in a couple of weeks.

I hope everyone is doing ok. Things are going fine here and dh is on leave next week which means a bit of a break for me.

@openupmyeagereyes that sounds like a really interesting book.
We are away until mid week next week, lovely weather but too hot still for us ha! We are up near the Scottish Borders and then down near York for a bit. Hope everyone else's weeks are going OK.

Sounds lovely Susan, must be a bit cooler up there. I hope you have a great time.

Shocking night’s sleep here. I have a review with the GP on Monday. Ds had two meltdowns yesterday because he’s so tired and last night he only had about 4.5 hours sleep. What could possibly go wrong? 🤣

I have been recommended the co-regulation handbook, which is written by the author of the declarative language handbook. I’ve just started it and will update when I’ve read more. Co-regulation seems to have a much broader definition than I thought, at least as far as RDI goes. It’s about being in sync with each other without thinking. Not just about calming distress.

.@danni0509 how is ds doing?

Open hope that you get somewhere at the review.

I was wondering about your DS too Danni. How is he getting on with the casts in this heat?

The intensive swimming course was a success this week. It was lovely to have 1/2 hour a day just watching both my children looking happy - shame it was only 3 days. DS went to the first SEND holiday club session. It is only 4 x 2.5 hours over the hols but I definitely welcomed the respite. There were 5 children with 3 adults so that worked well for DS.

DS has been rather aggressive and defiant this week. I can tell that I am also dysregulated too as I have hurt him twice this week when trying to defend DD or me so I think that I was using too much force in my frustration. We're off to Scotland for our hols on Saturday. I am dreading the drive. I My 2 are not good travellers ..hopefully it will be worth the effort...

dimples can you travel at night so they sleep? Hats off to you. We drove ds to Yorkshire when he was two, we’ve never driven him that far since. When we stopped for a break it was a nightmare trying to get him back in the car.

After his rubbish night, ds napped in the car for a whole 10 minutes this afternoon. Honestly, you couldn’t make it up.

I've not heard of co-regulation open, it sounds interesting! What a nightmare about the sleep. I'm glad you are seeing someone on Monday you must be exhausted.

The swimming course sounds great dimples and glad you are getting some respite. We've had some difficult behaviour too, I think the weather and lack of school routine has not helped. Oh wow, driving to Scotland is a brave move!

Danni it must be so difficult having ds in casts! Hope you're ok.

Sounds like a lovely holiday Susan.

We're ok. Dh has taken on two jobs for the whole of august which is good but also means I'm doing all the childcare.
It is nice that I can now take the kids out to places on my own though, we've been to the cinema and to the zoo (I think we did london zoo at record speed!).
I've worked out that we can do one thing in a day and that is enough for ds. Dd needs a bit more stimulation than that so I'm hoping she doesn't get too bored over the next couple of weeks

It's not too far to Scotland for us as we live in the NE England. So it appears to be 3.5 hours to the ferry and then a short drive to the house once we're on the island. My Mum has just suggested that she come with us. I feel a bit guilty as she would have a much more comfortable ride in my sister's car but not guilty enough not to accept.

Liv DS is definitely like that too - one outing a day or it can go pear shaped v quickly. I like to be out and about so I have to reign that in!

liv great that you can take them both out by yourself now. I guess it helps as dd gets older. We also often do things at record speed, such as Sea Life and once at a butterfly park when ds was quite young and had just learned to walk. He went in one end of the big butterfly house and marched as fast as he could to the other end where the exit was. Other times we may spend ages just in one place if ds gets fixated on something. Last year, I think it was, we went to Banham Zoo and didn't see much beyond their outdoor play area.

We had a much better night, thank goodness. It makes such a difference in the morning. I was so grumpy and naggy yesterday and couldn't seem to pull myself out of it. We are all going swimming this afternoon, dh hasn't seen ds' progress yet so hopefully it will be fun.

And yes to the one thing a day. We often, even on holiday, just have a morning doing something and then the rest of the time is downtime for ds back at the house. It's enough for him.

That makes me laugh open, ds did EXACTLY that in the butterfly house at the zoo .

3.5hours isn't too bad dimples, great that your mum can help! I would have jumped at the offer too!

Ha liv. They are hot and humid, maybe they both didn’t like the atmosphere inside.

Swimming was good, ds really loves it.

Our drive will be about two hours. Ds used to drop off, now he just asks when we’ll be there the whole way.

Yeah, I am not looking forward to the constant questions re journey time. I have recently turned it into a maths game. DS: how long til we get there? Me: 1 hour 54 minutes. DS: how long til we get there? Me: what is 1 hour 54 minutes - zero. After going onto -1, -2, -3 I start to bore him and he pauses ...for a little while.

Great tip dimples

I just had the review with ds' GP. We talked in general about school, sleep, eating and behaviour. She is going to continue to prescribe the melatonin (since it does help him settle better and get a little more sleep in the early part of the evening) but is going to refer him to Community Paed for a review to see what more they can do. I expect we'll have to wait a while for that though.

She did say it all sounded quite hard. I guess to someone looking in from outside it does but it's the norm for us. Hopefully the DLA decision maker will see that too. I think we probably have another 2-4 weeks for a decision on that.

I've watched these posts for a long while but the "doing one thing a day" really resonated. Recent ASD/ADHD/SPD/anxiety diagnosis so still trying to work it all out

StarDog how old is your child?

I also find that an activity on alternate days works well too. Some kids do well with downtime, hopefully they can still get outside in the garden too (though I appreciate not everyone has one). Less pressure for parents and spreads things out a bit. Unstructured free play is good for all kids.

Having said that, last year ds demanded we go ‘somewhere interesting’ every day - by which he meant just not staying at home. Thankfully a phase that passed.

Year 3. Just a struggle with how much down time needed to avoid meltdown on days and with an activity. Two days at home then activity doesn't work outside school hols/childcare or maybe I'm just overthinking it when comparing to NT peers?

That sounds like it could be helpful Open.

Hi Stardog

The journey to our holiday wasn't too bad although DS found the ferry a sensory nightmare. In particular when we parked on deck - it felt quite claustrophobic to me and he totally freaked out. Fortunately it was only 1/2 hour. We got to the approach to the house it all went a bit pear shaped. The owner had emailed to warn us last week that the drive up to the house was 'very steep'. This was rather an understatement of the challenge as it was also very rutted and pot holed. I had my foot to the floor and was shouting away as we drove up- I felt out of control of the car but knew that I had to keep going. This was the icing on the cake for DS - seeing me panicking finished him off. Fortunately the car is undamaged (so better off than the family who wrote the previous entry in the visitors book) and now safely parked elsewhere. But we're still on a bit of an emotional roller coaster. One minute giggling running into the sea with his cousins, the next kicking my Mum's dog. I think that I'll need another holiday to recover. The views are stupendous though. It's such a beautiful island

Star I think you have to not compare to NT peers and just do what works best for your child or family. Do you have other dc?

dimples what a challenging trip. Hopefully you can all relax into the holiday before bracing yourself for the return leg. Was it helpful having your mum in the car?

The book I’m reading on co-regulation is interesting. It works in tandem with the declarative language. In essence I think it’s a method that most people do naturally with their children (apart from the declarative language which they don’t) but like most things, it needs to be done more and with a more conscious intent for our ND kids (and for longer). In essence it’s about scaffolding and teaching them the missing bits and pieces of social interaction. There was a bit I was going to post but I’ve forgotten so will look it up and post later.

Sorry not posted for a bit. I’d be no fun with my contributions to the thread atm.

Dh left his job, had a mental breakdown, he’s been diagnosed with severe depression. Out of work now. Then ds has been the worst I could possibly describe and I’m a close second to dh with having a breakdown too, although I always feel depressed like this in the summer holidays which you’ll know from previous years. My mental health gets battered.

He goes back to school in 2 weeks and 6 days, I had to ring social services last week about respite. Someone was calling me back, still waiting.

I knew dh was depressed, known for years, but it’s in waves if you get me, he’ll be really down then ok for a few weeks, but he would never get any treatment when I told him too, but to be honest I never pushed him hard enough being so busy with ds so I feel to blame really. Dh is like that, needs making rather than telling and I never made him, I have to book all his drs appointments, literally organise everything for him etc he’s like a 36 year old child. He’s always just gone to work full time and I’ve dealt with ds and I’ve neglected dh and his well-being. I know I have to look after ds but in doing so nothing else has really mattered if that makes sense.

I’ve previously mentioned dh has got other conditions, like undiagnosed adhd for starters. Hence needing me to practically wipe his arse. I’ve been with him 19 years and he’s always been the same, . He’s really impulsive and erratic and his 2 brothers who are younger have diagnosed adhd. Then ds with it, I know hand on heart dh is adhd too, it’s a no brainier. So then I think wtf why have I never pushed for him to get a diagnosis and medication etc etc etc. Just too busy looking after ds and that’s when I feel a major cunt.

Im not blaming ds at all, that would be unfair, but his conditions and associated behaviours have made our home hell for years and dh said to me recently, I’ve been working in a job I despise, working hours I despise, mental health going down the pan by the day and then I come home and ds is smashing the house up and having tantrums day and night, not sleeping keeping everyone awake and attacking us both and I can’t cope with any of it, and then he said he would rather not be here at all. As in rather not be alive

Just really fucking depressing all of it.

Ds had his casts off to be redone last Thursday, 4 drs had to pin him down and remove them, it was horrific. Really horrific. And he never got them put back on. So we managed 2 weeks in them.

Send me positive vibes! x

My next step is get ds back to school and make them mother fuckers increase his hours to FULL TIME. And social services for respite.

I can’t believe SS. I phoned, explained everything, genuinely didn’t keep anything back, im past the point of caring what people think of me and my ability to cope, If they took ds they’d soon return him 🤣 yet no one has even phoned me back. What must you do to access help.

Ds isn’t eating, he’s living on about 300 calories a day, CAMHS put in emergency referal for dietician, dietician wrote back and said they don’t accept referrals for autism as it’s commonly associated with restricted eating patterns and for parent to buy peadiasure nutrition shakes, I bought it (£12 a Tin and I would need 1 a week 😳) ds won’t drink it. So my kids currently living on fresh air.

Oh danni, I'm so sorry to hear all of that. So much for you to deal with

First of all, do you think ds' behaviour is due to being out of routine or is something else going on? If the former then hopefully when school starts up again he settles down. Is he still taking his meds? What food IS he eating? Is this a side effect of the meds he's taking, or is that the stimulant type only?

Secondly, re your dh, it's not all your responsibility. I think it's really common for men to not seek and accept any sort of help, There's a reason why suicide is the biggest killer of men under 50 - they keep too much inside and don't reach out. I have never known my dh to go to the doctors (apart from for the covid jabs) in the 14 years I have known him. When we moved here he had not changed his doctors from the one he was registered at for university. As your dh has been diagnosed with depression, I presume he's seen a GP? Is he willing to start the diagnosis journey? Have they given him anti-depressants?

I really hope SS come back to you soon and that the both of you can get some respite. Feel free to PM me if you want to. Sending lots of unmumsnetty hugs.

So sorry to read that Danni. Please don't blame yourself. I really hope that SS get themselves sorted. Could DH's family help at all, e.g. could DH go and stay with them for a few days? It's not surprising that both your mental health is suffering, you need more respite. Full time school and my family help keeps me afloat most of the time.