Primary School Auties 10: Summer and beyond 2022

[LightTripper]

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

Ahna, I feel for your, I remember the days of ds having meltdowns like that and it was awful. I hope you can take some time for yourself this evening

Oh Carrie you poor thing. I have reversed into a wall when I was preoccupied before. Hope that it is easy to sort out.

Ahna I think that I was encouraging you to give the worker the benefit of the doubt last time but it doesn't inspire confidence them bailing when you were in crisis mode. I guess that most of the strategies that therapists/advisors have given me have been about interventions to prevent the meltdown happen rather than what to do during one. I have been keeping a diary as I find it v hard to see where some of these outbursts come from. I wondered if the adoption therapist thought I was very unobservant/distracted but now she has witnessed a meltdown 'out of blue' I think that she has a better understanding of my inability to identify some of the triggers.

By the way, I sent an email to my colleague re the language used in their email re ASD and all I got in response was 'noted'.

@livpotter did you find that the meltdowns faded with time on their own or did you find tools to minimise?

@dimples76 yes, sometimes it is helpful for the professionals to see how it plays out and that it really isn’t straightforward to figure out why they happen. Is the adoption therapist also experienced in autism?

Ahna I think it was a mixture of things. We got better at recognising triggers, avoiding them and de-escalating. We put in more tools to support him (visuals, social stories, Makaton, adjustments, moving school, sensory diet). Then Ds got better at understanding and regulating himself as he got older.

Sometimes things still go pear shaped, we had a very difficult period last year where he wouldn't go into school and none of us managed it very well. He definitely has mini regressions every now and then and there are some days where we are stressed and not behaving as well as we should.

But on the whole we are not experiencing the several hour/self harming/violent meltdowns that used to happen frequently.

Hmmm dimples that seems like a bit of a fob off!

I think so Liv but I guess at least I tried ...He is one of the least empathetic people I have ever met and unfortunately for me, he is my line manager.

Ahna like Liv I would say that DS's dysregulation is greatly improved both in terms of frequency and duration. For us 4 was the most challenging age, so far....
The adoption therapist does try to manage expectations in terms of they are really working on the developmental trauma and attachment challenges. Hopefully things will get easier but he is always going to have to navigate the world with those issues as well as ASD/ADHD. They don't specialise in ASD but have a lot of experience at working with autistic adopted children. You can see that a lot of the trauma/attachment interventions will also help with strategies for ASD, e g we have done a lot of work on emotional literacy and DS is much better able to talk about his feelings- which enables me to head off some of the meltdowns. We also do lots of activities to deal with 'jumbly' feelings and there's a lot of overlap with sensory diet, eg we hit cushions on the floor, a swimming woggle off the sofa, stamp feet scrunch/rip up paper. I do struggle with the issue that CAMHS is looking at his issues through a neuro diversity lens, post adoption support though trauma/attachment lens, no one has really discussed learning disabilities (both DS's birth parents are diagnosed with moderate learning disabilities and I wonder about DS's IQ). So in terms of special school even I am not sure what is his primary need. I think that his EHCP is worded as learning disabilities as GDD is up front and centre

carrie hope you’re doing ok today.

dimples sorry about your boss but not surprised based on what you’ve said about him before.

Ahna that must have been difficult, I hope today is better.

Ds up at 5:30 today, it’s becoming more common at the moment, thankfully. His behaviour at school is still up and down. It all feels a bit hopeless to me but we’ll keep going through the motions for now and HOPE things improve. At home he is pretty good and fun to be around at least.

<waves> to everyone else.

that sounds challenging @dimples76 lots to address but good if some of the therapy ‘overlaps’ in a way, although any one of those components would be a lot on your plate - lots of respect to you for dealing with it so well and helping your DC

@openupmyeagereyes we had a 0430 start although no night wakings so kinda ok ish on balance. It is DD’s last day in MS nursery today, I always feel sad about changes and this one feels hard somehow. Nervous about the new place.

DH away for a week, my DM is coming for a long weekend but I’m a bit nervous about that too. She doesn’t really ‘get’ how it is. Eg she wanted to meet a friend for lunch on Friday when she is looking after DD - I tried to explain it won’t work but don’t think went down well. Also she has a tendency of always asking about DD in a weird way ‘has she made any progress?’ Basically various tensions, roll on next week …

dimples I meant to ask if your ds knows he’s adopted? Just being curious, feel free not to answer as it’s not my business at all.

Open, yes he knows that he adopted. I don't know how deep that knowledge goes - he says that he was in Xs (first name of birth mother's) tummy. He was removed at birth and then moved to me at 18 months so he does not consciously remember the time before I became his Mum. I think that he doesn't realise that being adopted isn't the normal course of things. The thing that bothers him is not having a dad - I hate watching him watching other boys with their Dads. To make it worse since I adopted my brother emigrated to Oz and my Dad died so he doesn't have any men he is close to other than my BiL.

Open when is the EP appointment?

Ahna that sounds tricky.

@dimples76 aw yeah I can imagine that is tough for you to hear. Apart from it bothering him, does it bother you (eg are there areas where you feel male input would be helpful / needed)? Is BiL open to a bit of one on one time with him every so often (/ if you’re up for it?). V Sorry about your dad and that is also a shame re your bro.

Thanks Ahna, I can always ask my BIL to help but he is SAHD now to a 3 and 4 year old (also adopted and eldest has complex needs) so understanding and support are in big supply but time and energy not so much! Unfortunately it's not just me projecting re the Dad thing - he asks about it often

dimples I remember now that you’ve talked about it before. He is very lucky to have you

We have no EP appointment yet. I must chase - again!

Ahna how was dd’s last day?

Well no RTAs today so small mercies and all that…. 😬😬.

Dimples, I had in my head that DB was moving near to you, did you say that or have I just made it up??! I do take my hat off to you, often. I think I’ve said I was single early 30s and had I not met DH do not think I would have had the balls to do it all on my own. I understand your concerns and DSs but you so obviously give both of your children an amazing and stable family life, there are so many ‘conventional’ family set ups out that that aren’t close to what DD and DS have with you. Dads who have no interest, Dads who aren’t supportive to partners or have the roles they should with their DC and so on. Again, I’m being nosey and feel free not to answer but do you think being a single mum now makes it harder to start a new relationship or can’t you be bothered? If anything happened with me and DH I’m very certain I couldn’t 🤣. That said, some people are quite keen to meet someone aren’t they? Each to their own but I would definitely be done! 🤣🤣.

Ahna, no help at all to you but I think portage here is patchy too. I asked the GP about it and the HV and neither had heard of it! Kept asking me to repeat the word?! Helpful. How often are DDs meltdowns? It must be very hard if there’s no obvious trigger. DS has always had a tendency to be moany/ whiny but very off and on and up and down rather than a full on 2 hour blowout iyswim. I agree with comments that things often improve with age. I remember a corker when DS was 4 and we were going to Cheltenham for a long weekend with the kids. He was kicking off in the back of the car so much and kept trying to grab DD and pinch her, we had only just set off and were at a roundabout which took us back home or M1 South. DH and I were having a massive row about whether to just go home whilst going round and round this roundabout, if anyone had seen us they would have thought wtf? We must have gone round it 20 times. Eventually we did go and surprise surprise it was a disaster. So we have all been there in those younger years and still sometimes now but it does get better in many ways.

DMs can say silly things…. Are you close generally? You should have let her go for her lunch and take DD, she would have ‘got’ it then! Do you have any plans for the weekend? And yes, how was DDs last day? Her new placement may be a really positive move for her in which case portage may be less significant.

Open, glad DS is settled at home and happy and looking forward to Christmas! It does make such a difference how they are at home. Fortunately DS has got over his cold and is now back on quite good form.

Uno, how’s the throat? Don’t tell us you are still on the rum…? Hope you are feeling a bit better now.

Oh bit of an update, I had a call with the consultant about DSs epilim, I’ve said before he’s been seizure free on the meds for 3 years now so she wants to wean him off. I told her about his behaviours, hyper, no focus etc and she said this is a very common side effect of long term meds and so all the more reason to take him off. So we have started to reduce them. She said no one should be on meds if they don’t need them which I have to acknowledge.

obviously I’m interested to see what happens if anything but terrified he will have another fit.

Evening all!
Finally got antibiotics yesterday and feeling almost back to normal. Back to work tomorrow.

Almost Carrie my sister and family moved from SE to NE at the start of the year. So we went from being almost 6 hours drive apart to 20 mins - it has been fantastic. I might have mentioned my brother planning to move back from Oz but my DN who is 15 put the brakes on that. However, my brother and family are coming home for Christmas so we are super excited about that - it's been 5 years since I last saw them.

I have been single for so long now I really can't imagine having a relationship. I certainly don't have the energy or inclination for that at the moment! I think theoretically DS would like me to meet someone but I'm sure he wouldn't like it in practice. Recently I had a male friend come around for dinner (with the kids). DS has met this friend several times before. We have been totally platonic friends for 30 years. DS told his TA that I was getting married!

Sorry I meant to ask Uno if the rum worked

@dimples well it made it a bit numb but honestly the only thing that really worked so far has been the antibiotics. It was getting worse then within hours of taking them I felt better although I do feel a bit sick but small price to pay. DS and I had scarlet fever so it did get pretty nasty before the antibiotics kicked in!

@UnoQueenie glad the antibiotics worked, I liked the rum idea too!
@carriebradshawwithlessshoes can imagine that’s a bit nerve racking re meds and seizures but hopefully you feel well supervised by doctor and that nothing feels too rushed?

last day seemed ok for DD, obviously she doesn’t know it’s last day. They gave a photos folder to us which was nice but also hard tbh as the images start pre regression and then you can see the emerging struggles through the months, but indeed time for her to move on. DD2 will continue going there and I think ideally I’d avoid DD1 joining at pick up / drop off in case that’s confusing for her but logistically that will be challenging. Not sure if it matters just feel it may be better to have at least a few weeks without that

used to be close with DM but ups and downs, haven’t felt well supported since DD’s regression (I know we are abroad but even messages etc). Will try and make a nice weekend of it, probably go to the beach or something one day

@dimples76 oh the getting married thing, bless him but what are kids like..!

@Ahna65 you say you haven’t told her it’s her last day. Would she understand? Does she understand concepts like that, Christmas etc?

I drop DD at DSs old school then take him on to his. He’s quite tired on a morning, he doesn’t really give much reaction to it. Hard to know in those circs what they are thinking. I don’t feel from observing him that it’s upsetting or bothering him and as you say, logistically it’s impossible to do it any other way.

@carriebradshawwithlessshoes that’s good to know re the drop off.

No she doesn’t understand anything like that - telling her where we are going / Christmas etc / dad arriving home / any of it really. As far as I can tell anyway, comprehension extremely limited.

You may be surprised. When DS was about 4 I started with my yes/ no cards. Would she sit with you on the floor, make them big and pop them in front of her. Would she respond if you asked her something simple? Like (in an animated way) is your name xxx??! Big smiles. She may not point but would she reach for one card, or maybe even look at it? Then lots of praise, maybe even a sweet or whatever.

I feel I always need to say this because I would have have said DS would think I was completely bonkers and do nothing. Fairly shortly after he had grasped the concept he could he moved on to other stuff etc.

just a thought.

@carriebradshawwithlessshoes no she wouldn’t respond to questions (or choices) atm, no success on cards or similar. I don’t think she would understand even basic questions, I feel like she takes in sounds and words but just the noises more than the actual meaning. Hard to describe what I mean

the most she will do by way of communicating is e.g. bring me the remote if she wants to watch peppa, reach for me if she wants to do some sort of movement game / climb up my legs. Both are quite new though so I guess progress in a sense.

A poster on another thread said when her DS recognised noises/ tunes she would link the words with the same tune and hum/ sing it when giving the instruction. He linked the tune first to the thing/ activity so she used that football song for go to the loo with funny words. Vindaloo? Worth a try.

start this weekend and DM will be reporting your MH to the authorities… 🤣🤣

I seem to remember that danni did lots of work with her ds on his receptive language when he was young and didn’t seem to understand a lot. He came on leaps and bounds so it’s always possible.

We drive past the old school every day, I wish we didn’t have to.

Ds had a great morning at school, though has been awake since 3am. Early bed for all of us!

Uno glad you’re recovering.

dimples sounds like wishful thinking from your ds. I was going to comment similarly to carrie that no dad is probably better than a crap dad. There are far more men working at ds’ SS so maybe your ds will benefit from that if he moves school.