Primary school auties thread 9 - spring / summer 2022.

[danni0509]

Thread 9.

Links to previous threads below.

For the parents / carers of children with additional needs, most of us have asd / adhd children in primary school, but anybody is welcome to join us to chat x

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

All ok here. Took ds to the wildlife park the other day, that didn’t go too badly considering we were out the house for 10 hours and walked 25,000 steps according to my Fitbit.

Nothing planned today, Dh is at work, I sold my car last week (old, loads of miles and breaks easily, costing a fortune!) so share with Dh now (he has a posh car tho so I’m not complaining 😂) but obviously when he’s working I don’t have the car, so may go for a walk with ds, need some toilet roll anyway and I’m sure ds will rinse me for sweets as usual.

Hope everything is ok for everyone x

I have mentioned to Ds about adhd / autism and special schools recently…..

I think I mentioned on here he knows I put medication in his drink now, I’d been drip feeding for a while for the long term goal of him swallowing the tablet whole, he doesn’t finish his drink off always leaves the bottom (saves me a bit, always has!) and that’s where the medication is, so I make him use a straw for him slurp it all up, I explained he has to take a medication and that’s why he needs to drink it all, he asked what medication so I said adhd medication, and explained why and what adhd is and what the medication does or is supposed to do (explained in simple terms) he’s ok now and watches me sprinkle it in his drink and drinks the majority (still won’t swallow the tablet, but one step at a time)

We walked to kfc a few days ago and we walked past old school, which we spoke about and he asked why he has to go to a school in a taxi, so I explained why he moved to x school and why x school is different to old school in terms of the things they do to help.

I’m not sure he really understands anything that I’m saying, but don’t suppose it hurts to keep talking about any of it.

He doesn’t realise he’s any different but thought now was a good time to start dropping things in, especially since he’s beginning to understand why and how and questioning things.

danni it’s great you’ve started the conversation, he will take it in in dribs and drabs over time.

Ds did sleep though last night but only until 4:30 so sadly not magic melatonin

Hello,

Hope it's ok to come and say hello on here. My DS has been newly diagnosed autistic, he also has a genetic condition called 22q deletion syndrome. Lots of very subtle differences for my DS but think a lot of people underestimate how much thought and preparation needs to go into everything! He's currently in P1 and school have been really supportive from the start.

@danni0509 good you've started to talk about it. It's hard, I find. But good to open the conversations.
@openupmyeagereyes boo to the 4.30 wake up!
Hi @roughtyping welcome!
Hope everyone is having a nice weekend. We have popped into town and the weather was lovely. Got some new library books too!

Welcome roughtyping. Glad school is going well so far and that ds has a diagnosis to support his needs.

We’ve had a good day, the weather has been nice here too.

Hi and welcome roughtyping x

Managed to go swimming this morning and DS really impressed me, he's learned so much its amazing. I still find it tricky as he can be quite splashy etc in the pool and he's quite a big guy and I'm only 5 ft so tricky but it went really well. We went to macdonalds after then ran races all the way home and I'm tired out now!!

Welcome roughtyping!

I think it's definitely good to have these conversations even if he doesn't fully understand @danni. It means the information is there when he is ready for it, and he can absorb what he is ready for gradually over time.

Hello roughtyping! We are quiet at the moment but say more when DCs are at school 🤣🤣.

Swim sounds great Susan. Hope everyone’s having a good Easter. Went to DSILs yesterday , unfortunately DS and DD got nipped several times by their puppy so that was a bit of a hullabaloo! Both yelling, DS wanting to be picked up constantly! DSIL mortified. Reminds me why we don’t have pets!

Otherwise just struggling on with the adhd meds stuff. It’s complex and such hard work. In a nutshell it seems like without it he’s hyper, without it he’s having lots of upset meltdowns/ crying so just replacing one lot of problems with another. Nothing is easy is it.

Oh random one, do you all have trampolines? I know danni does. Do you find they help? We don’t but I think it would be good for DS. DH claims it would be a monstrosity in the garden. Frankly I don’t care if it calms him down!!

Hi @carriebradshawwithlessshoes yes we got DS a trampoline for his birthday last year. DH also wasn't keen as it's taken up half the garden. Honestly, it has been a total game changer. If DS is feeling disregulated or even just too full of energy, he goes and bounces. The sensory tent we got was less of a favourite but the trampoline I cam only highly recommend! And I occasionally get a bit of downtime!
We are fine having a nice Easter although DS got mega excited last few nights and has been trying to make himself stay awake. He's shattered but staying up reading in bed! I got a bit cross on Fri night as he just wouldn't sleep and was just winding me up so I've now said he can read in bed either a torch but I can't just lie there hour after hour. It was 11.30 on Fri, I was shattered! Anyway asked him last night, can't believe I didn't think of it before, if he'd had a bad dream recently. Turns out every night since Wed night he's been having this dream where a monster eats everything in the world, everyone dies, then it eats the sun then nothing survives, the universe collapses and its the end of time??!! So no wonder he's not been wanting to go to sleep, poor guy. But this is what I mean about his communication differences. He would never have told me about it if I hadn't asked him specifically about his dreams. We talked about how it's not real etc. But he saw my parents on Wed and they were worrying about covid so part of me wonders if he's made covid into this monster in his mind?? Oof, tricky! I heard him whimpering about 4am so popped in to give him a cuddle, which seemed to help. I remember having bad dreams about his age where people died etc. So hard. Our cats been ill too and at the vets do he's been asking about whether the cat will die. I mean, the cat is almost 18.
Anyway! We are off on a forest walk today and then I'm back at work in the morning woth DH stsying at home, schools back on Wed, so hopefully get back into a normal routine soon.
Hope everyone else is doing OK.

Ds back to school Wednesday.

Overall he’s not been too terrible, but by god am i sick of supervising kids!!

I just want to go outside and peg some washing out without ds throwing my pegs over the fence or put my washer on without him turning it off mid cycle, etc etc etc.

I took him to my nephews 1st birthday party on Saturday, I was debating whether to go as ds and several 1 year olds is a total no go, but my sister said it was just 3 babies, and a few older kids, I would of stalked ds anyway so I said I’d go for 1 hour, show his face, he wanted to go and I would of felt bad not taking him. It was warm weather and she’d done it all outside.

Ds was so good, honestly unbelievable, everyone kept commenting (they know what he’s usually like) he was so gentle with my nephew and my sisters friends baby she’s only just learning to walk and he was walking her around the garden asking if he could give her milk and trying to get her party food.

I ended up staying for like 5 hours, I had no reason to go home when he was being so good, he needed the life supervising from him still and I did 11,000 steps on my Fitbit just following him around, but he didn’t hit anyone, he blew my nephews birthday candle out and refused to let anyone blow it out but him, gouged a huge piece out with his hands and ran away with a handful of cake before they cut it but other than that he was perfect.

There was another 8 year old there who thought ds was just pure strange, her face said it all, but it’s my sisters best friends daughter and she explained quietly ds is a bit different and then they eventually played for a bit. He said to her, do you have a mobile phone? She was like no, he said that’s a shame I have some questions I needed to google 🤣 it’s very clear how different he is to other 8 year olds, her mum was nowhere to be seen, her daughter was outside for hours playing with absolutely no supervision, I have to be like ds shadow! I think I supervised ds more than the babies got supervised!!!

carrie ds went off his trampoline for a while but he’s back on it now, he goes on it for about an hour a day, it’s right outside my patio doors so he goes on it and I can wash the pots, hoover the kitchen etc and still keep an eye on him, if I ever have anything I have to do in the kitchen and it’s not raining I put him on it, he doesn’t get a choice 🤣

That all sounds fab Danni!!!! I think it’s a yes to the trampoline then, DD would love it so it could be one of their joint bthday pressies as bthdays are only 2 days apart (unless I get desperate and need to get one before June!!!!).

It also combined with the juices could get me to that Amal Clooney size that hopefully you all still have in your minds eye 🤣🤣🤣.

How’s it going Danni/ Kim?? 🤣🤣🤣🤣🤣

Kids back to school Wednesday here too. Can't wait to have some time to myself again. Although not looking forward to the morning misery of getting them into school!

Carrie we had a trampoline but got rid of it because the kids never used it. The game changer for us has been a gorilla gym. It includes a doorway swing which the kids love.

Danni sounds like ds was brilliant at the party.

Susan that's so awful. I used to have horrendous nightmares at that age too so I can sympathise. I think my parents nearly lost it when I refused to sleep on my own for years!

We've had a pretty good break. We haven't used the buggy once and ds has been brilliant about holding hands and not crossing roads without me. We had my cousin visit with kids and it was very obvious how different ds is to the other kids. I did have to tick off dd for being mean and excluding him, but otherwise it worked well.

carrie I’m still on my diet, I’ve been on it 8 weeks yesterday. I haven’t been able to do the gym at all whilst ds has been off, so 3 weeks since I last went, and then he had that week off with covid just before he broke up, so I think I’ve only been twice in 4 ish weeks. But I’ve been doing exercises at home in the morning, when ds has had his breakfast I give him his iPad for an hour and crack on, I make it up as I go along, usually do about 30 minutes of squats, donkey kicks, all sorts of things I imagine Kim would be doing herself. 🤣 I’m off back to the gym Wednesday morning, 3 times a week for an hour a time.

My diet is ok, I’m trying to eat more healthy, higher protein etc, I just bought a ninja foodie to use, anyone have an air fryer? I haven’t used it yet, I’m going to attempt to make some home made chips and chicken breast in it tonight when ds is in bed.

I’m only 10lb lighter, and can just (this week) fit in a 14 on the bottom half now, was 16 when I started. I’m a little disappointed though, I’m still 15 odd stone, couple of years ago I’d lost just shy of 2 stone at this point!

susan can your ds separate reality from make believe / dreams? Ds can’t! He thinks what he’s dreamt has really happened. He said once a foot came out of his tv in the night and kicked him, he’s still adamant to this day that happened! Lol.

liv great news on using less of the pushchair x

When I say I’m in a 14 on the bottom half now. What I actually mean is they are like a second skin 🤣 I couldn’t get them up past my knees last time I tried tho.

carrie I hope your pelvic floor is up to it we got a trampoline in the first lockdown and I think it was worthwhile. Ds has phases of going on it or not.

Susan poor ds, I hope the bad dreams stop and he is happier about going to sleep. Sorry about dcat.

liv I’m not looking forward to the mornings either. Ds back Wed too.

danni brilliant that you and ds were able to enjoy the party.

We’ve had a good break but haven’t been out a great deal. I do feel we should have made a bit more effort but ds has been happy enough and we’ve been getting some bits done at home.

I’ve not been fasting for the last week, back on it tomorrow. Weight loss wasn’t great because I was eating too much during my window so I need to cut down a bit this time. Also, get out for a walk and exercise more.

Well done @danni0509 and your DS!!
We had some drama this avo when DS tried to follow his grandparents down the road home and ran out of the house giggling with no shoes on. He's too big to move back in and I panicked and got stern. He eventually came back in but my anxiety was spiking and he was in a right mood with me for the rest of the afternoon. Apparently I was horrible for spoiling his plan??! We have talked about it and he's promised not yo do it again but the problem is that he gets these patterns stuck in his head and I have to find a way to change them. Argh.

I’ve just been sorting ds clothes out, chucking old stuff, sorting new stuff / summer bits. I see the best outfit in there, the one that I love the most…. his school uniform ! 🤣 I’m so pleased he’s going back to school tomorrow.

susan if I ever tell ds off, like properly tell him off which is usually as you mentioned, in panic, him running off or doing something really dangerous, I shout, it’s like automatic reaction when you panic isn’t it! I cannot help it.

He hates it, says I’m horrible, nasty, I’m not a nice mummy, he doesn’t like living with me, he says I’m unkind, he absolutely hates being shouted at, which I don’t do if I can help it, but situations such as life or death I have no control, he ran away before half term when the taxi un harnessed him and opened the car door, I chased him (how the fuck I caught him I don’t know) and grabbed him, he run straight off my road, across the next one, straight into a blind bend, cars always come down there! He would of been dead! I shouted so loud, my legs were like bloody jelly from anxiety getting him back to my house. The taxi and PA was just stood like I felt ill all afternoon from stress! Usually she stands in the way of him so he can run then I get him, but that day he had other ideas.

*usually she stands in the way of the car door so he CANT run.

I had no shoes on either 🤣 and my dressing gown, like a mad woman chasing a wild beast round the streets!

danni & Susan they both sound like very stressful situations requiring a beverage afterwards.

Ds decided to run away from me in Tesco last week for fun. He normally doesn’t do this and hopefully won’t again as I came down quite hard on him for it and told him he won’t go back if he does it again.

Dh was back to work today after a week off. Ds didn’t want to go out so I spent the day at home being summoned roughly every 5-10 mins 🙄

When is he back at school Open??

Have to say I dare not let go of DSs hand when we are out unless it’s somewhere he can run like a playing field but even then I’m worried he may not stop/ come back. So I have him in an iron grip at all times. Unlike what Susan says he is tiny and I’m 5 ft 6 so i can haul him if necessary or even pick him up, it’s just the running. Occasionally I test him for a second but he will just bolt. My reflexes are v good, the number of times I’ve had to grab his hood just in the nick of time.

I do hope he calms down as I am 46 this year so not getting any sprightlier! I won’t be able to be doing this when he’s older and bigger and I’m geriatric!

He’s supposed to be back tomorrow but is already saying he doesn’t want to go and just wants it to be like the holidays. Doesn’t bode well.

Ds is pretty good now, he doesn’t often run off, thankfully. I still get nervous when he goes ahead of me though.