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

Danni so sorry about the wedding and the unsupportive in laws. At my sister's wedding DS was only 2.5 and kept shouting out greetings to the bride and groom and other family members. My sister's mother in law told me to take him out but I had spoken to my sister and BIL beforehand and they were adamant that they wanted him there (unless he was distressed) so we stayed but it was v uncomfortable. Can't imagine how she would have been with him now.

Danni does DS have a Disabilities social worker? Is it worth trying to get one for respite especially during school hols. I have been fortunate this time through the Council's 'Food and Fun' scheme that I have been able to access some SEN sessions 2 were at a holiday club that he has been to before, up to 6 children with 3 adults and then another charity which accessed adapted bikes and trikes (DS is a long way off being able to cycle) which was 4 adults with 4 children. These were all free. He is going back to the bikes and trikes on Thursday which gives me some precious 1:1 time with DD.

I take my hat off to you persevering with the outings - but like you I can't cope with living under house arrest. I can't take DS into shops, he goes wild trying to grab stuff and starts hitting me and screaming at me if I refuse to buy what he wants.

I need to tighten up my storage of sharp objects. I came down from putting DD to bed last night to find DS with the kitchen scissors - he had cut into one of his favourite cuddly toy and got the tiny beads out which he had then put in his mouth. Why or why

Carrie i take him home, he kicks off, it’s a nightmare to get him home, he kicks off the rest of the day, he says the right things the next time when I reminded him what happened last time, (we spend our lives reminding him about what we expect, what we don’t expect etc) we go out again, same thing happens again.

He does not learn by consequence. Lol.

Why the kick off at the beach happened the other day when I posted was because I was buying him a Lolly, that was the plan before we left for home, he hit me twice so I didn’t buy the lolly, he had been warned the first time I got whacked, that if he did it again = no lolly. He of course whacked me again, so didn’t get the lolly, (if I say it I mean it, he knows this anyway, it would be rare for me to back down when I say something)

I got whacked loads after this.

And around in circles we go.

consequences don’t make him think twice, he’s smart, just seemingly not in this area.

Carrie reason I say the other improvements are linked to adhd meds, are because all these issues we had been trying to solve pre meds, some of the issues for years. Then he starts medication and we solve not one, but many of the issues, that we’d been trying to solve for years with no luck iyswim.

Could be age and natural progression, but I don’t think so. 1 thing or another I could understand but it’s quite a few different things.

We had been trying to sort the toileting for 3 years off meds, he goes on them and he’s clean and dry day and night within a year.

But yes dimples like you say, I’m not under house arrest. I need a walk and fresh air, I feel so depressed stuck in the house. Time especially drags when you’re cooped up.

All the places we visit we do at quieter times, park first thing, soft play first thing, cafe this morning my dad was at my house for 9am. Some things we can’t avoid but I try my best too.

Just about to take our first look at the DLA application form this evening? How did everyone else find it? Anything I should know? Did anyone get any help filling it out?

thirdistheonewiththehairychest Use the Cerebra guide to help you. It’s not an easy form to fill out as it focusses on all the negatives.

I do a lot of talking with ds after episodes too. So for instance that after the beach, later on when calm. Always when calm.

I spoke to him about it, ask him why I didn’t get him the lolly, he answers, because I hit you, then I say.. and if you didn’t hit me? He says I would have eaten a juicy lolly. I say do you know why you can’t be rewarded after hitting mum Etc etc. he says because it’s bad behaviour and hitting isn’t acceptable. I tell him he had a warning (which I always give to give him chance to modify his own behaviour) I explain what a warning is, ie it’s a chance right there to stop in your tracks and stop the behaviour to still get what I’m talking about. He understands. He really does. I always speak to him in terms he can understand.

His understanding is phenomenal anyway (when I think he couldn’t understand a thing I said a few years ago)

I talk to him each and every time, I ask him questions so he answers to make sure he’s understanding, we talk through scenario after scenario.

I will say just before going to the sandpit… the last time you went to the sand pit and you threw stones at the children what happened? And he says ‘you gave me a warning to stop, I didn’t stop and you broke my heart in 2 and took me home’ so we have that kind of conversation, I remind him, which I have to do as he’d do it whether I reminded him or not, he tells me he’s not having his heart broken again today and he won’t do anything wrong.

but what does he do when we get to the sandpit or wherever we’ve gone? 😭😭 breaks his heart in 4 this time, because he literally cannot control himself.

I know he’s got adhd and autism and he cannot control himself for those reasons, but then at the same time he cannot be throwing stones at children, smacking everyone and terrorising everyone who he comes into contact with.

I could just not go to the sandpit and not put him in that situation in the first place which I imagine is what most parents would do (I go early enough so he has no victims to throw stones at or terrorise so to speak) but then he likes the sandpit and it gets us out of the house. And you can insert any activity into sandpits place and that’s the sort of thing that happens wherever we go, if I don’t bother because of the aggro it brings then the kid would never get to leave the house and then how would he ever learn. where would he get the opportunities or experiences to learn this is how the world works and this behaviour isn’t accepted here ? If you do this then x will happen to learn him to understand actions have consequences? Do you see the circles I go around in.

He cannot put any of what we talk about into practise. It doesn’t make him stop / think twice. He doesn’t learn the next time or the time after or the time after.

Long standing issue we have.

Im hoping it changes, he’s still young, he’s much younger than his actual age anyway. So I’m just hoping the penny is just taking a long arse time to drop.

danni you just have to hope that eventually it sinks in. I don’t think you could be doing any more. You’re a rock star.

Danni much of what you wrote about your DS, consequences and the sand pit scenario resonates with me. DS is also pretty terrible about throwing stones and sand. Like your boy he can calmly discuss what happened afterwards and understands why I made the decisions I did. However, in the moment I think it's tunnel vision/lack of impulse control and there is no getting him to stop/follow instructions.

I am struggling a bit with some of the consequences I impose in the heat of the moment and then have to follow through with. For example when we were driving home from Scotland DS kept hitting DD. I pulled over a couple of times to remonstrate with him but it had no impact. DS then clobbered DD with a large toy. I told DS that he had to stop hitting and that if he hit DD again this toy would become DD's. He hit her again so I said Poly is now DD's. He cried for ages but then settled. However, he remains v upset over the loss of the toy. I don't think this episode will change his behaviour next time. Now DD keeps gloating to DS that Poly is hers, triggering more rages. So I wish that I had given a different consequence.

dimples I think it’s ok to change your mind and explain why. It’s good to model that to them that sometimes our first thoughts aren’t the right ones.

Dimples I’m also as guilty as charged with doing heat of the moment consequences. I’m getting better at this though, I really do have to think twice. It’s the more they push you though isn’t it.

And then you want them to know you mean business and you mean what you say so you have to follow through even if it is something outrageous you’ve threatened them with. I do totally understand.

Thanks for your support. I felt that this one was one I couldn't reverse on because that wouldn't be fair to DD. She has a lot to put up with and I had said the toy was hers. I am going to order another one now. I agree Open that it's good to acknowledge our mistakes. And I am trying not to be too hard on myself as I was driving in heavy rain with one child screaming, one child crying and arguing with my Mum. My Mum still suggests ideas from her childhood - her Granddad put her and her sister out of the car and drove off (funnily enough I was not on board with this plan!)

Thank you. Where can I find this Cerebra guide please? This is all very new to us...

@thirdistheonewiththehairychest https://cerebra.org.uk/download/disability-living-allowance-dla-guide/
It's so hard to fill it in, I made a separate positives list just for us when I did it.
@danni0509 DS struggles with cause and effect too and can still be impulsive but I notice he's less so if he's had less demand put on him. Sounds tough for you, roll on term!
@dimples76 I think you're a Saint doing all this on your own with two!

Or crazy ElizabethBennett'sBoots! To be honest if I had known how DS's behaviour would develop I would not have adopted DD (not that I would be without her for the world). Until DS was 4 he was the most placid child imaginable and when I applied to adopt again when he was 5 he was more defiant but I would still have described him as gentle. However, for the last few years his behaviour has been much harder to manage and this aggressive side has emerged. It started at the start of lockdown which is when DD joined us.

When does everyone go back. I can’t believe there’s only another week! I’ve really no idea how it’s going to go for us. Is anyone else nervous?

Back Mon here. Same teacher, some different kids, and yep I'm worried a bit because transition is always hard and behaviours tends to disregulate for a while. I'm hoping age will help with it but just don't know.

We have a new teacher and 75% the same kids. I feel like this is a make or break year regarding getting him in ft.

Hi everyone can I join you?

My son is 4.5 diagnosed at 2. He is staying reception, he currently manages 2-3 hours only. But even that will be a huge relief after the longest 7 weeks of my life 🙈. He has very high support needs it's exhausting. Not back till 6th!

bryceQ is he starting at a mainstream school? What support do they have in place for him?

The specialist autism school we like only takes from year 1, so he will stay where he went to nursery for one more year. He has had an ehcp since he started at 3. They've been amazing at accommodations, it's a shared space so hopefully this year won't feel very different to last year and the same staff are around. But overall, it's just not an environment he can tolerate for a long time.

Hi @bryceQ , great that you find the accommodations good and the autism school sounds perfect. Do you already have a spot? What are his main challenges day to day?

I also have a 4yo, she’s in a SEN preschool / school, she will be there until 6yo and then we see, probably the older school next door.

His key worker this year has an autistic son and she has been wonderful but the specialist school we liked is just amazing. We will have a fight to get him in but we will get all legal aid we can to do it as its just what he needs. We don't live anywhere near an autism preschool so we struck lucky with this mainstream but he couldn't cope beyond reception. He mostly plays with mud all day.

Aim this year is to try and very gradually work him up to longer time. I honestly can't imagine him being "at school" all day it blows my mind.

What about your setting? Are you happy?

His challenges are everything. Every single aspect of life. He is like a one year old in the body of a 6 year old (he's really tall). You have to be on the ball constantly. But he's a happy boy and always laughing. I was not laughing yesterday when he chased a jogger to try and touch her bum though.... He's going through a love boobs and bum phase 🙈😳