Thread 12. Autism and any other additional needs.

[danni0509]

Thread 12.

For parents / carers of disabled children, autism, adhd, and all other related neurological conditions. Most of us have children in primary school. But everybody welcome!

Chatting about anything and everything related to SN!

Just typing quick as ds needs to get ready for bed. I’ll link the previous threads later.

x

@liv hope DD isn't too poorly, chicken pox is horrible. @dimples76 sorry you're now poorly too.
DD did open up on holiday and say she finds groups of more than 10 'too people-y', not sure what I'm meant to do with that as she won't get a class that small in mainstream and doesn't want to change schools ( she's too academic for any of the special schools near us anyway).

That is hard Jules, unless she can attend a unit.

Are there any private schools nearby Jules which might work? Obviously getting the LA to agree to fund it is a whole other matter!

DD is starting DS's school in September and DS has been giving her advice! Today I asked him what was his favourite thing to do at school and he said walking around the yard talking to his cuddly toy. DD is super excited and has even picked out her outfit for her first visit which is almost a month away.

I'm still hoping with more support she'll be able to stay where she is (at least for primary) but there are a couple of bases that might work, but she hasn't even got an EHCP yet. I doubt a mainstream independent would take her due to the challenging behaviour and all the specialist ones that might fit are high schools.

Hope @dimples76 illness goes fast! And @livpotter second time chickenpox?? I didn't know that was possible. Was awful for us the first time - hope it's OK

Terrrrible night last night. Literally midnight until 0530 awake. Grim grim grim. Huge meltdown, and then just all over the place.. emptying our wardrobe, laundry basket etc.. trying to lie under our bed, all sorts.

Oh and then had notice that the nanny (who does the afternoon slot after early finsih) can no longer continue from July. Has a more 'career' type role and can't combine it. Not a big shock but a big downer - was so tough to even find her. No idea what we will do.

Have been struggling in the office today - I think if anyone said anything bad to me i'd just burst into tears.

Actually the third time Ahna, thankfully each time it's been pretty mild. Just annoying to have to keep her indoors. Sorry you're having such a rubbish night/day. Honestly the reason we don't have a nanny or babysitters even is cause I can't bear the thought of having to find the right person, so that's totally understandable.

It's so hard to find the right placement Jules. Hopefully you can more support where she is now.

That is so cute about dd and school dimples! Glad ds is a bit better.

Open and Carrie how did getting into school go today?

liv school was fine as far as I know, thanks. He did wake up at 3am though and refuse to go back to bed, so this morning was rather fraught too unfortunately. Though I’m sure the refusal was a response to how cross I was yesterday. He’s been sleeping much better the last couple of weeks, waking between 5-6 most days with some earlier starts but this was worse.

dimples glad dd is excited about school but 3 seems so young!

Ahna so stressful for you

Wow 3 times Liv hope that they're on the mend soon.

No one would blame you for crying Ahna after a day/night like that.

Open it is so young. Lots of 2nd thoughts about not delaying her (as I did with DS) but is too late now as her nursery is full. I have to just keep in mind that nursery staff think that she is more than ready and she can't wait

@Ahna65 I don’t suppose you’re near a university? My friend has an Ed Psych student who does the after school run and sits and entertains them till she finishes work, I think she views it as good work experience as both children have autism.

I hope you’re feeling better this morning, completely understand how stressful it is when childcare falls through.

School seems to be ok, less protests thank the Lord. For now anyway. Am sure something will come up 🙄🙄.

Re chicken pox, I’m no medic but isnt I it the case that if you get it ‘properly’ you can’t get it again? I identified one spot on DD at nursery and she did get it again a couple of years later and very badly (had to go to the Drs she was so unwell, escorted via a side door after I’d shown them the state of her on the camera). Dr said well at least now she will never get it again. So I’m hoping that’s right.

Dimples I think you are right to send DD to school. My DD was very young in many ways and is a July baby so started school at 4.2. TA at nursery had given me all this rubbish about her not coping in that environment but she actually flourished in many ways once she was in it. It took time and was a gradual process but better than another year in nursery. It was a really good learning curve for her.

Ahna, crikey, so on a 12 til 5 awake eve, when are you and DH sleeping? I take my hat off to you as I would just not be able to do my job or even think straight on that. Presumably you had an hour or so before 12? Anything after 5? Does it wake DD2? Re childcare and I say this tentatively because we don’t know each others circumstances really, do we, but could you not (at least for now whilst things are so difficult) do reduced hours based around DD1s school times? What are they? Can you wfh to give more flex? We are unable to recruit at the mo because competitor firms are just offering certainly here max flexibility. We interviewed a great lady but lost her to another firm who offered FT wfh, hours to start and finish based around school start and finish time for her son who has Sen. I don’t think that’s unusual in our industry at the mo so long as people are showing they can do the job and make the ££ for the business.

Or could you take a career break for a bit?

Open glad things are better with school and sleep!!

@Jaberwockky no university in our town but not too far away - we did have someone previously via this route and it worked well (apart from the fact it's usually quite temporary). Will definitely try and refresh the advert though - it does work better if they are actually motivated to have experience with an autistic child and have some sort of knowledge.

@carriebradshawwithlessshoes , yes, got 1.5 hours or so and then we tried to take it in turns but it's tough with the volume of it and the adrenaline I get post meltdown. Probably managed 3.5 hours in total but yesterday was so rough! DD didn't sleep in the day and then wouldn't settle until 11 last night - no idea how that works for her either. Last night was not as bad, just a couple of unsettled hours but no full meltdown.

Yes I probably could ask for more flex / reduced hours. I know my firm doesn't want to lose me and in theory I can do my job pretty flexibly / wfh doesn't massively impact things. From a personal perspective, I find that hard - my career is (/was?) really important to me and I already feel sad that I'm not managing to get my full potential and feel like I'm having to give up on my ambition a bit. But at the end of the day of course home life and DD's needs are more important, so indeed perhaps that is just the right thing to do (cut down and be there for her). Just something to come to terms with on a personal level I guess.

Does / has anyone had issues with DC overeating? DD is constantly wanting food (including late in the eve / middle night) but I'm convinced it's more for the sensory side of things than hunger. She takes 2 big sandwiches to school now - it's more than I have for lunch. She's not overweight (and obv so young) but I'm worried that we are getting into bad habit with the amount she's eating. The nanny let her eat a whole box of raspberries, whole box of blueberries and a full banana as a snack yesterday (aside from it being loads of food does she know how expensive fruit is !!! It's like we have to have a constant supply of berries in the house atm...)

My career is imp to me too Ahna so I get that completely. And also the adrenaline then of not sleeping in the night! I think you have to sell it to yourself that it’s temporary/ just at this point in your lives to make it easier for everyone (if you did that of course.) Not forever. Even with NT kids it’s really hard to keep every ball in the air, full on work/ career, kids, husband with good career. I don’t think I know anyone who has ‘it all’. My friends who have maintained stressful careers have husbands who are secondary earners but most have taken some side step (or even had a career break) at least whilst the kids are young. I can only do what I do as we have family nearby and I work flexibly. I would also find having a nanny or non family member looking after DS really stressful so the trade off of a step down career wise and a good but not the best I could have salary worth it.

How does DD ask for food in the night etc? Or do you mean you give her something and she then won’t give it back? DS will keep going as he’s a good eater but I just move stuff. So for example he may come in and go to the fruit bowl and get a banana and eat it then go back for another and so on at which point I’ll just remove the fruit bowl and put it in another room or cupboard that he can’t get to and distract him and he’s ok with that. He likes nuts which are in a tin and he would eat the whole tin but I tip a few into a dish and put it out of sight then. I’d do that with the raspberries. He will want to keep eating if things are in sight but wouldn’t ask for them/ more of them if they weren’t. He is tiny (too thin) so no weight issues.

Lack of sleep is so hard, glad last night was better. I always feel like I'm just about clinging onto my job although they are really flexible. So far DD has been mostly ok with going to the childminder (who is brilliant and provides her with a chill out space) although she wouldn't cope with after school club at all. Unfortunately she doesn't do school holidays and there's few holiday clubs that'll take DD that she'll agree to.

Ds has overeating issues too, it's to do with interoception and not realising he's full. It's getting better with age and school are doing lots on healthy eating in a positive way. I decant into a bowl and put the rest out of sight.
Re: work, my career is important to me too. I'm a professional person (you have to have a masters to call yourself a professional in my field) and had quite a high flying post in a university before DS. I naively assumed I'd take a year mat leave and then slot back in. Firstly, they changed the nature of my job while I was off. Then I decided DS was too young to go to nursery and I stayed at home until he was 3. I retrained though and ran my own business from home. Then I tried to go back to old workplace for new high flying job when DS went to preschool. It worked for a bit as he was happy and my parents helped with wraparound care. But then covid hit and DS stopped coping once he started mainstream school. My parents were so worried about covid that they couldnt help. They're getting older and I didn't want them taking on all that responsibility especially when DS is in a tricky phase.
I managed to reduce my hours in a new local post and I started there at the same time as DS started his special school. I feel that, generally, we are both thriving although I miss the prestige of the uni sometimes. I'm saying I think that you can feel successful and fulfilled even when things are downscaled. Its made me also think more about notions of success. What is more successful really? To burn out trying to do everything or to find balance in life? I might go full-time again in the future but I also like the balance that part time brings.

Yes indeed wise words @MoominMamasTribe and @carriebradshawwithlessshoes and have to look at everything as a whole. I think I can adjust my thinking it will just take some time. Also at the moment I sometimes find DD so challenging to be around which I know sounds awful - it's mostly when the meltdowns / smearing are bad and I'm also exhausted - so I'm a bit worried about impact on my mental health of covering that time. But maybe it will help the challenging behaviours and help to to be more connected with me, at the moment it's really hard to get any interaction. Also the idea of not having to look for / manage a nanny really does appeal because that is a huge stress for me and often I am frustrated that they aren't doing things how I'd want it.

@carriebradshawwithlessshoes she generally pulls us to the kitchen. Either that or she will climb onto the counter to try and get into bread bin etc. Great that your DS eats nuts, I wish DD would get onto them as a snack. She is 90% bread!

The amount of nuts DS can get through Ahna can bankrupt me in a week though! They cost a bomb! Would she eat dry cereal? Stuff like whole grain cheerio’s is a favourite here and takes ages to eat with fingers (good for fine motor) 🤣🤣. I’d def move the bread bin 🤣

Oh and re MH and work could you possibly do 4 days? So have a day or even part of it to yourself? What time is she home from school?

@carriebradshawwithlessshoes haha yeah fair nuts are also expensive!! I buy a ton of nuts / seeds from a wholesaler to powder into her weetabix in the morning for some vitamins / protein. But so far she won't eat them straight.

She would eat dry weetabix for sure but I can picture her eating like 20 at 11pm... haha. Yes moving the bread bin is a good idea. Will also talk to OT about interoception see if they have tips.

She's home at 1515. In theory could do 4 days but I think with reduced hours 5 would be more realistic, also more in line with trying to do the same job I do now (which I think is also in a way good for my mental health). But maybe an idea to have a trial period and see how that actually goes for everyone involved.

I think the adage you can have it all but not at the same time is often true, unless you have excellent and reliable help. Things are a lot more tricky when you have a child with SN. It’s not an easy task to balance everyone’s needs (including your own)

Ds has had a calm morning at school, though he seems to do little work. We have his AR later this month and I’m a bit apprehensive about it.

I think compressed hours can be problematic because in my experience of people doing it, they still end up doing a FT job but getting paid less.

Ahna I think it's incredible that you are doing so well at work with so much to deal with. I have struggled to accept my lack of career progression. However, even if I was to secure a grade would mean less teaching and more management as well as possibly a bit more research time. Teaching is the part of my job which gives me the most satisfaction. So as Jules said I guess it's about how you define success and also trying not to compare yourself to others. Easier said than done!

Bad start to the day here with DS who was in a very aggressive mood. He told me that he was going to punch DD all over her body then would not stop kicking me. It breaks my heart to see DD flinch or cower as DS approaches - even with a smile on his face she has learnt that he can't be trusted.

Thanks everyone I really value your wisdom and views! @openupmyeagereyes I like that one, hadn't heard it. What are you expecting from the AR / is there something you are particularly apprehensive about?

@dimples76 yes - comparison for me is something I really need to move away from... Most of my peers who are 'successful' in the same job have a live in nanny and/or no children etc etc.

Oh dimples that sounds horrendous start to the day... What do you do when he kicks you, try to react in a calm way I guess? Awful. And yes we have it very occasionally where DD2 looks scared by DD1 behaviour and it is a horrid feeling, I can imagine that breaks your heart. Really really hoping for you this is a phase that passes soon. Do you get to have much one on one time with DD? I imagine that's logistically difficult but would also be lovely for both of you if there is an occasional window for it.

Ahna I guess I’m worried that they’ll say he’s not making progress fast enough and/or not doing enough academic work and that they can’t meet his needs. Hopefully they won’t.

Sorry about this morning dimples, a very difficult situation.

Ahna one of the reasons that I feel sad about DD starting school is that at the moment I have Wednesdays off with her. 1:1 she is a total joy to be with. I have requested to change my hours come September when she starts school. So now I do 3 days over 4 but from September I have asked to keep the same hours but work 5 days during term time (this will only require my Mum to do one pick up) and then 2 days a week during the main school hols which means that I will only have to work the occasional day during the school holidays. It should make things easier but I will really miss my Wednesdays with DD.

Open somewhat cynically I was thinking if school are still getting funding for FT attendance for your DS is it likely that they will say they can't meet his needs? I always get a bit anxious before annual reviews.

When DS came out of school this afternoon the first thing that he did was hit DD so it feels like we are picking up where we left off. Roll on bedtime