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

Ha, I did think that myself dimples. Well for dh and I anyway. Problem is finding someone trustworthy though.

How do you feel about ds moving to a specialist school?

StarDog I don't think you’re overreacting, our dc are more vulnerable to peer bullying and taking advantage. As long as you are happy with the school’s response and that they are following through with it, hopefully that will be enough to protect dc.

Babobab how are you feeling about your test result now?

danni hope all ok with you.

Ds has been on pretty good form today, though he didn’t stay long at school. Honestly, I really can’t see that this is going to work out given where we are. I will be amazed if things just suddenly turn around.

Open I want him to go to special school preferably now but definitely for secondary. I am struggling to find one that seems suitable/would accept him without diagnosis.

Hello everyone <waves shyly> I am new to the thread, feel a bit of an imposter as DS doesn't have a diagnosis but I am absolutely sure he will get one eventually. He is 5.5 and has just started Y1. I had my lightbulb moment last summer, doubted myself at first but have become more and more sure over the last year. Have not got very far at all in terms of progress towards a referral and diagnosis. School has no concerns - I think he's an expert masker and it's early days - so not taking me very seriously. I paid for a private OT assessment and have been clinging to the OT tbh because she is the first and only professional I've spoken to who gets it and doesn't dismiss or patronise me. I thought school would take me more seriously after getting the report but they said it didn't reflect what they'd seen. OT has offered to visit and do observations with SENCO but she's ridiculously busy (victim of her own success I think) so not sure if and when that will happen. So far I've had to nag remind school to do sensory circuits as recommended by OT. Feels like things are going at a snail's pace. I have requested a meeting with SENCO but not sure what I can reasonably expect or ask for.

I have skim-read the thread and came across quite a few things that made me think of DS or just resonated with how I feel a lot of the time. Of course all our children are different but hopefully I have found some people who just get it

Oh I should also say that DS is my oldest and I also have a DD who is 2... in combination they are very hard work indeed and DH and I struggle a lot with them and each other. Most of our arguments are disagreements about dealing with the children (usually DS) and of course we are stressed and exhausted most of the time which doesn't help.

So I am wondering how many of you have partners and how many are single parents, how do you deal with it if your partner has a different approach, and do you have any advice on staying married when most some days you just want partner and/or children to bugger off and leave you in peace?!

Hi @NameChange30 and welcome!
Sounds tough with the two DC. I am married and we mostly deal with life by often reminding ourselves we are one team, and DH has realised that I'm usually better at dealing with DS, although I'm learning to let him in more too.
Try to have some time just for you and DH, although it's hard, but we just grab lunch when we can or the odd date night. DS doesn't sleep til quite late but sometimes DH and I stay up chatting at the weekends etc.

@SusanStoHelitsPoker thank you

Hello NameChange, married too, I understand where you are coming from. It surprises me not one iota that divorce rate is high in families where children have asd/ other dev disorders. Or frankly just young kids! 🤣.

All our kids are different but so are our family circs so I can only speak for my own. We have 2 sets of GP still around plus other family members on my side and I don’t know how we would manage otherwise. The GP are elderly but can manage both children for short periods. The younger family members on my side manage better and for longer periods which does, not all the time, but enough, allow me and DH to do stuff. Even like in a couple of weeks we have dinner booked somewhere nice for 7pm… local but lovely, we will be back for 9.30. Even GP armed with DVDs can manage 2.5 hours. Younger family members stayed for a couple of nights over the summer when DH managed to go away to London.

in terms of day to day like Susan, DH knows I manage better but we do compliment each other in that I can tend to blow up and DH is more reasoned. So DS started being faddy with foods a while ago and I was in a state saying he will never eat again! Rah rah rah! dH said he’s probably just off it, calm down. Sure enough a week later he was back to normal. Just one example.

it is hard and it will be hard with your DD at that age too. What specifically causes the most stress? Is that something that can be specifically tackled? Such as poor sleep in a ND child if completely disruptive can be medicated etc.

I also think that with Ds I have insisted DH step up more. He’s happy to leave the DC to me and whilst I’m happy to do DDs parents eves on my own, sign off on stuff for her etc, because DS is more complex I insist DH is involved. Like last night I had to choose a slot for DSs parents eve so I stood over DH until he confirmed after checking his work diary when he could come…

also on weekends we sometimes do divide and rule! He will take one child and I’ll have the other or sometimes I take both for a bit then tell him it’s his turn and to take both and bugger off to MILs for an hour or 2.

Yep we have a sleep in / own time each most weekends, so I can have some me time on Sat morning then DH gets his time on Sun morning! Works well and allows us both to have time just with DS as well as family time all together.

Hi namechange yes married here too. We don't have a lot of outside support. My parents are both dead and dh's live a couple of hours away, although they would come down to help if we needed them too. We split our weekend so we each have a day to ourselves, we instigated it when ds was quite young as I really needed the respite and dh needed some time out of work to get things done.

Hi Namechange and welcome. There's no need to feel like you don't belong here. I have been on these threads for nearly 5 years and DS still doesn't have an autism diagnosis (hopefully next year).

I am a single adopter which obviously brings its own challenges. I have not had a lie in since I went on a work trip 3 years ago (and that was only until 8am!). One of my sisters also adopted and has quite complex children - she and her husband have rather different parenting styles. Witnessing some of that tension does make appreciate some of the pros of being on my own. My other sister has 3 children who are all autistic (one also has rare genetic condition, dyslexia and DCD) she is single and lives with my Mum. They kind of co-parent which again can be a tricky dynamic, eg Granny thinks that the children should all sit at the table to eat their meals whereas my sister just wants the kids to eat (DSis seems to have won that battle). I'm very lucky that my Mum and sisters live near by, understand special needs and are very supportive although as you will have gathered they are all stretched very thin. So we help each other out where we can. I am not always sure if I am making the right choices but I guess like everyone here I am just doing the best I can with what I know at the moment.

Hello NameChange30. I’m also married. Dh works full-time from home and I don’t work. Ds is 8 and with me all day as he is only in school v part-time at present. Both sets of gp’s alive but too old to look after ds so dh and I only get time alone together after ds goes to bed.

We do bicker about how to manage ds in the heat of the moment when it can be quite stressful. It’s not ideal and I wish it happened less.

Otherwise, we take turns getting up with early rising ds and putting him to bed.

I always think your DS sounds so good at home Open and will watch TV/ have a bit of screen time and not wreck the joint/ go to drink the bleach like DS does if unsupervised! I’m often envious! What would he do that the GP couldn’t manage for a short time?

so a variance of answers Namechange30!!

And he is carrie. But he’s also easily frustrated, short tempered and prone to intense meltdowns that can become violent. Not really fair to inflict that on 70/80 yo’s.

The year he was 4 my IL’s looked after him about 4 times so dh and I could go out for lunch which was lovely. The last of those was a Christmas thing, in ds’ first term at school. He had become really clingy and didn’t like me going out. He had a fit and was trying to hack the door open with his toy fireman’s axe. Mil was quite shocked and they didn’t offer for years after that! He’s much worse now when he gets angry.

Your ‘bit of screen time’ made me chuckle. He’s a full on addict 😆

But I am grateful that he (largely) doesn’t need to be watched like a hawk.

Like I like a bit of wine Open 🤣🤣🤣🤣🤣🤣.

aaaaargh need help! The squealing continues and to cut long story short I think is pissing off the school bus. They clearly aren’t happy, I wonder if it’s upsetting the other kids as they have hands over ears etc when it pulls up. I wonder if they will ban him?! What do you reckon? Or should school have ‘strategies??!’

I think you need a bit of detective work to try and work out the cause. This is from understanding your child’s sensory signals

Thank you open

Thank you all for the welcome and replies, it's interesting to hear how you're all managing things, both similar approaches and different
perspectives.

carriebradshaw
It's great that you have several helpful family members, that's priceless!
We have limited family help for various reasons... my sister and her partner are fantastic with DS but they have a baby of their own so not in a position to help since their baby was born. Still, hopefully as the children get older it will get easier (although my sister might have another so I'll have to be patient a while longer I think!)
To answer your question about what causes most stress, it's not sleep no (sleep is ok, I realise we are lucky in that regard). Mealtimes are stressful because both children are fussy eaters and DS won't sit at the table for long at all before getting up and doing something else, he also nags us about dessert before we've finished our main, etc. I've kind of accepted that's where we're at (although it's not ideal obvs) but it drives DH crazy, he comes from a culture where families including children are supposed to sit nicely at the table for the duration of a meal and eat what they're given. And other than meals it's just stressful looking after both children as they tend to wind each other up and there can be lots of
screaming and sometimes physical injuries if we don't watch them like hawks and intervene quickly. I actually bought some noise dampening earplugs for DH and I because it's often the relentless noise that tips us over the edge.
YY to divide and rule - we find it tends to work better if we take a child each but of course if someone needs a break or to get shit done then one parent will take both... generally easier to take them out as I find we rarely have a peaceful
time at home unless TV/tablet are on.
It is difficult to fit everything in - meeting the children's needs, getting chores done, time to rest, time to ourselves individually and as a couple. That's just family life I guess but it does feel harder than it "should" or at least harder than it seems for some families.

dimples76 it sounds as if you and your family all have a lot on your plate, but it's great that you're near each other and can help each other sometimes. And even if practical help isn't always possible, someone who understands and can offer moral support makes a big difference too.

openup
We do bicker about how to manage ds in the heat of the moment when it can be quite stressful. It’s not ideal and I wish it happened less.
Yes absolutely this. Also my DS is obsessed with screens too and can be left to his own devices if he's alone and not with DD - we can't leave them alone together. He's sweet with her most of the time but does hurt her accidentally and occasionally on purpose :(
That book looks interesting, would you recommend the whole thing?

Welcome @NameChange30, it seems we are in similar positions as my DD also is awaiting a diagnosis and expert masker at school. It's very frustrating!

I am married, DH has far less patience with the children than I do, we bicker a lot and I often have to tell him just to go away and calm down. I don't really have a great deal of advice different to what others have said, but we try to walk away from each other if we start to argue around the children and then have a more rational conversation later! We know that the children are very hard work and make sure to allow each other 10 minutes alone wherever it's needed.

Reaching out to you lovely people for advice please - as mentioned my DD is an expert masker which makes me doubt myself frequently especially having not had any input from professionals yet. She's been protesting school since she started, and if often takes two of us to get her dressed and out the house as she just goes into flight mode. But she steps into the classroom and her mask goes on! Her teacher has said that she has not seen any issues at school and she is getting on really well. But we are seeing daily meltdowns at home and real anxiety about school.

How on earth do I deal with this? How can she get any extra support to help her deal with sensory overload or any anxiety during the school day if she's keeping it all bottled up? Or is this our life now? It's exhausting!

Sounds very similar indeed.
Could you afford to get a private OT assessment for her?
I've found that very helpful - still not a magic bullet but definitely helpful.

Susan I meant to ask you what happened with DSs transport? I think he did get a cab? Was there never a bus? Why didn’t it work out?

school sent me such a nice message saying don’t worry, he actually doesn’t do it there! They also said that whilst he’s getting more confident they feel he is still finding his feet and they are getting to know him but not to worry, they know he can get there. His old school never said anything like that!

NameChange30 if your dc has sensory issues and seems to display lots of sensory related behaviours you may find it helpful to find solutions or redirections if necessary. It has an overview but is largely a very long list of behaviours, such as head banging, spinning, biting nails etc. with a section of what to consider like the photo I posted.

carrie must be such a change to have positive communication from school.

Hi @NameChange30 I'm also married. We were together a long time before getting married and having our son so it was a huge shock and adjustment. We were used to being selfish and we had our hands full from day one. We try spend quality time together and have separate time with our friend groups and this definitely helps. I was the same as you nobody was taking my concerns seriously but everyone remarked how difficult my son was to manage and I was constantly critiqued and turned away from every play group we tried to join. I'm also a major introvert so definitely struggle being around people I survive by putting on my headphones and reading some days 🙃

My partner and I are not in a romantic relationship but are obviously very good friends and generally I think we co-parent OK! I'm definitely the one that is more likely to want to accommodate and he's more likely to want to push, and gets more frustrated probably. But while I sometimes find it frustrating, other times I think it's actually good that she has somebody pushing her out of her comfort zone a little bit (but probably also good that she has me to put the brakes on and make sure it is not too far outside!) We definitely disagree about things, but not usually to the point of arguing (and honestly, when we do it's usually because he's triggered something from my own childhood that I'm sensitive about - it's not really to do with DD!), so I'm grateful for that as I'm terrible at conflict.

I sometimes think the lack of romantic side is a blessing as I honestly don't know where I'd find the energy for date nights and all that, and I suspect we might be less patient with each other rather than more if we were trying to sustain that whole other aspect of life too!

We're also v lucky that DD sleeps (DS less so but just normalish 5yo I think!) and that we can afford to throw money at problems like uncomfortable shoes/clothes, sensory overwhelm at events (we can try things and if it's too much we just go home and don't worry about the wasted money) or airports, etc. (e.g. paying more to fly from a smaller airport). I think life would be much more difficult and I'm sure we'd argue more if any of those things weren't true.