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

Jabberwockky how far are you moving? Is there any possibility of him moving now or is the journey too far?

Dimples ds absolutely believes in Santa, he has a countdown on his iPad he checks every day. He asks me what the elves are doing right now, what time do they go to bed, do they get paid for making toys etc, he loves Xmas.

He didn’t understand Xmas until he was a month off 7 so he’s owed a few years iyswim. I’ll not have the heart to tell him.

Same for Halloween, he’s going Halloweening again next month, we bought his costume yesterday, he’s a tall nearly 10 year old so I suppose at some point it will start to look a little odd, I have had the discussion with dh about this year or next year being his last, but at the end of the day I’m stood at the doors with him and as long as he’s not going alone when he’s 45 I’m sure it’s not going to be a problem for a couple more years. Can just imagine ds out halloweening as an adult not understanding why the police are being called. 🤣🤣 I’ll have to let him know at some point in the future.

I bought ds a wheelchair today, been saying it for a while, for days out and long walks on a weekend, just so much easier to manage him when he’s contained. If he’s having a moment which is often, I can get him in the wheelchair with his iPad etc.

Ds school said to go through wheelchair services and they would help with any info needed, but when I enquired he needed an assessment with OT and the GP had to fund it, seemed too much faff, his GP moan about prescribing him nutrition shakes when he has an eating disorder ffs.

He can walk, although he does have issues with his feet and legs that’s why he’s under orthotics and wear special boots and splints, he’s a full time tip toe walker, but it doesn’t prevent him from walking,

I was wanting it more for behaviour and to be able to manage him easier, so we saved the referrals and polava that comes with trying to get the nhs to provide a service! And bought one from a mobility shop. It’s brand new, has a guarantee, has puncture proof wheels etc, I bought him a padded seat cushion, it has a waist belt to strap him in. It’s a small adult one, but he goes in the adult wheelchairs at the shopping centre and they are fine for him.

Nothing special to look at, but will make our life easier I hope.

It folds down and fits in the boot of the car too. Ds will love it, he doesn’t know I’ve bought it yet.

Ds still believes in Santa but it’s only a matter of time, he’s found out everything else isn’t real this year

danni that looks fab, I hope ds is pleased and great that it will make things easier for you.

I think it’s ok for older kids to trick or treat isn’t it? I wouldn’t think it was odd as it’s just a bit of fun.

Jabberwocky I can’t remember why the delay for SS, is that when they have a space? It’s ridiculous school haven’t been honest with you, I hope you can resolve the situation.

Hope that your DS loves his new wheelchair.

I think some people object to older kids/teenagers going around trick or treating in big groups but I think of you're with DS no one would be bothered by that. My 2 are excited to get their new skeleton pj's out - I am making them wait as they still have last year's (wear year round). I can't imagine telling DS he can't do it any more - we have the advantage of him being v small

Ds loves his wheelchair. We took him for a walk down the seafront after tea. He had an umbrella over him and a blanket on, really cosey, it was just me and dh who got soaked. But ds enjoyed himself, he didn’t want to come home.

He’s given me a timetable of all the times and days he’s going in the wheelchair, including Halloween, bonfire night and Christmas Day 🤣

So lovely to read your latest post Danni

danni how’s the wheelchair going down?

I hope everyone has had a good week. Ours was good after our bumpy start, school is still going well (with the odd niggle, par for the course).

It’s suddenly got colder in the mornings here, very autumnal 🍁

@danni0509 so lovely to read your update,so glad he's happy and that it makes it so much less stressful to enjoy some trips out.
@openupmyeagereyes so glad your wewk was good overall.
We're OK here. DS came home with a cold on Friday. Three weeks in, typical! Popped into town yesterday but it was so busy for him, he coped well but was happy to get home. My book club was cancelled last night so i watched the first Fantastic Beasts film, which was incredible I thought! We've had a chilled out morning so far, catching up with Strictly in-between bouts of trampolining. DS was up at 6 but came into.our bed for an hour so.it could've been worse! I've just looked at booking some events for Xmas and most of the tickets are gone already, madness! But I managed to get a winter lights visit and a santa visit so I.think all good,I just couldn't believe how quickly everything gets booked. At least I've got pumpkin picking sorted!
Might go for a forest visit later and I've got all the ironing in the world to do after that. Another busy work week coming up. Counting the weeks until half term already!

Another day. Another problem.

Ds old PA left last week, she said she didn’t have the expertise to look after ds and she didn’t want to take him anymore, she asked the office to take her off his run, so another started, now she’s already gone in record breaking time as far as PA’s go. He’s had another new one start today. I’ve lost count the PA’s he’s had now, think he’s on number 17 as of today. Taxi office has been ringing me every other day lately with their complaints.

Taxi driver has been taking ds for 3 weeks and ds has been late for school 5 times already. This morning they came at 8.45am (he has to be at school at 8.55am and the school is a 35-40 minute drive away) how unacceptable is that?!

I lost my shit with him this morning, I told him last week when he was 20 minutes late that ds is agitated waiting and he can’t keep being late for him and it’s not reasonable to expect ds to get to school late at least twice a week plus he’s so riled up when getting in the taxi due to the unacceptable wait he’s had with them coming late, (I’m not talking 5 minutes late, I’m talking 20-25 minutes late) I have to have him ready for a specific time too so no chance of slowing our morning routine down as sometimes he’s on time ish.

So he makes it to my house 25 minutes late this morning. Standard pick up is 8.20am always has been, he rocks up at 8.45am. Says he can’t do nothing about traffic and having to pick the PA up from across town and he has to drop 2 other girls off at 8am somewhere else first and that basically we have to like it or lump it as he can’t do anything about it.

I got him told straight, not acceptable, not ds problem, I’m not happy etc.

Phoned the taxi office told her she sorts it or i am phoning the council. Had enough of this company and all its issues.

Ds has been playing up at school too, I have his teacher on the phone every afternoon and I’m so fucking fed up of it all.

I phoned the school this morning and have asked them to log all of this incase I need it for the council.

They aren’t usually bothered about ds being late, keep saying they don’t mind with him travelling in and they allow for traffic etc (Less time they have to look after him 🤣) But that’s usually when he’s 10 mins late, they say that, I always like to ring when he’s left and let them know he may be a few mins late due to taxi if they come late.

But half hour late is bordering on ridiculous. She agreed this morning and said it’s becoming regular with them. So this morning when I rang the school office and when I explained that ds having to wait is making him really agitated and pissed off, he pulled my hair and pulled down my door blind off the bracket and snapped my house key (those things he did this morning) and say he’s going to kill all the kids in his class etc, it’s all just unnecessary. At the time he’s doing all that he should be half way to school!

Apparently it’s all sorted now. He’s dropped the 2 girls run and will be here every day for 8.20am now.

He’s not had a very good day in school but had been manageable in the taxi.

He’s at CAMHS at 5pm which should be interesting.

That’s a relief danni, totally unacceptable. I remember you had the same before when the PA (?) had a drop off before your ds.

Good luck at the appointment, is it just routine?

So glad that the taxi situation seems to have improved Danni. Hope that the appointment is useful.

Last week on impulse I signed DS for trumpet lessons at school. Yesterday he had his first lesson and came home with the trumpet. I think our neighbours are probably cursing us (again!) But DS looks so happy with the trumpet. Had a lovely message from the teacher saying that it had been super meeting DS and that she is looking forward to working with him

Yes it was just a routine 3 month appointment,

Ds was a total little shit during his appointment, wrote fuck off on the wall in marker pen, pulled my hair, wiped blood off his scab all over the wall, broke the height measuring thingy, flooded the drinking water fountain, kept swearing at the learning disability nurse who comes in (she tries to help ds have his bp taken which is never successful) I can barely think straight and that’s with dh in with us helping too.

Anyway he’s had his adhd medication increased again, he’s grown so has had it upped to max again to keep up with his height / weight (that’s how this one is calculated) in a month he’s going to call and if no improvement (I don’t see it, ds is always like this) then he’ll up his sertraline.

He’s also put him on the waiting list for some anxiety therapy sessions at CAMHS he said the waiting list is about 9 months tho 😳

He’s broken his teachers glasses today, she emailed me. (He’s also spat on her several times)

I asked ds why he broke her glasses, he said because I dont want her to be able to see.

I don’t know why he’s like the way he is. Honestly I don’t.

Although ds’s teacher annoys me by constantly harassing me.

I do feel sorry for her. Ds seems to be causing her a lot of issues.

I do know that she has eyesight issues from when I went to the summer fair. So I’m really pissed off ds has broken her glasses, she said she has sorted another pair but I swear to fucking god if he breaks another pair his beloved safe is being wiped and he can buy her another pair from his money.

I’ve told him this tonight too. I can’t imagine it will make him think twice though.

God he makes me furious sometimes.

Ive always tried to make him be kind to other people and just not be so horrid! then he says ‘I’ve broken her glasses because I don’t want her to see’ just makes me feel really shit and made me feel all my effort all these years has been for nothing.

Autism or not, I know loads of autistic kids that don’t behave like that. Just makes me wonder where the fuck I’ve gone wrong with him.

He genuinely seems to enjoy inflicting pain and misery on people. (I wish I was joking)

Met my mum for a walk a few weeks ago, she had my 1 year old niece, ds came too obvs, he wanted to push the pram, I helped him push it, he took my niece over to a thorn bush and pushed her pram in to it.

Why did you do that ds? Because I want X to get spiked by the bush and bleed.

Does anyone know why he’s like this? I really wish he didn’t have these tendencies. I do worry about him.

I’m reading, we are having some house works done at the minute and it’s bloody chaos. Can’t find a thing, DD has been sleeping with me for a week as no bed and so on. Delightful!

Danni, you haven’t done anything wrong. Do you think it is a kind of control, he doesn’t feel in control of his life, or maybe even himself, which then comes out in him taking a situation that he can control and making his mark? The cahms appt, he’s anxious and doesn’t want to go so behaves as you describe, your niece, she’s little, he feels this is a situation where he can have the upper hand so acts out. I don’t know. Even if that’s right I don’t know the answer. What does amaze me tho is that he’s under cahms, have you asked them that question? It’s ok upping his meds or talking about long lists for therapies but as trained psychiatrists do they answer the question ‘what do you think is the root of this behaviour?’. Are they saying anxiety? Or what? It seems a bit like going to a dr and describing a symptom and them not concerning themselves with why you are having they symptom but just giving you, say, painkillers. Just all the wrong way round, surely?!

do you think he is playing up to people who can’t handle him? Again, is this a control thing? Like the taxi, you said upthread when he was going to school in the taxi with the driver and you he was fine. With the PA and driver but not you he is not fine. Why do you think that is? Presumably because you are doing something different to them. I know they were quite inflammatory but if they didn’t react to him do you think he would be better? Because he’s not getting a reaction out of them?

hope today is a better day.

Danni I don't have any answers to your question - other than it is not something you have done.

My DS is the same, he seems to revel in causing pain/distress to other people (well particularly DD and me) and animals. That's one of the main things I used to try to talk to his therapist about. I understand the lack of impulse control but not where these impulses come from? I really worry about this
and wonder whether I am raising a psychopath.

But the other weird thing with DS is that generally (and this is a real saving grace) there isn't much force behind his attacks. When I was at my sister's the other day her eldest (age 5 learning disabilities) punched his Dad really hard in a rage - obviously not acceptable but the behaviour just made more sense to me.

I also don’t think you can say other autistic kids don’t behave like that as it’s such a diverse spectrum comparing children on it is pretty pointless imo.

Thing is carrie I’ve read plenty on here over the last 7/8 years, I read threads often enough and it’s not very common for a child to enjoy inflicting pain on others. I get they do it, I know ds isn’t alone in having violent behaviour with asd, he’s just unusual in that he has absolutely no triggers.

It’s the enjoying it. I’ve spoken to his teachers and it’s not very common in his school either, hence why they aren’t exactly sure how to solve it. I’m aware all autistic children aren’t the same. Ds isn’t like many autistic children I’ve met to be honest. Plus he doesn’t just have autism.

Like dimples said ds revels in causing others pain and I really don’t like it at all. He can’t live the rest of his life like that. He really can’t be trusted around others.

He’ll randomly just grab hold of someone’s hair and rip it out with no warning just for the reaction. He knows it hurts, he knows he shouldn’t do it. He doesn’t care. I’ve had all sorts of emails this past 2 weeks of what he’s been doing, he’s banned from the dinner hall for stabbing people with forks, he’s now not allowed access to any form of cutlery in school.

If you see his face and the noises he makes when he’s inflicting pain, you’ll understand what I mean. He really does enjoy it. I’d just really like it to stop.

When you say you wonder if you’re raising a psychopath dimples that’s what I thought too.

Like don’t laugh at what I’m saying, but some of the horror documentaries dh watches (when ds isn’t here, don’t worry ds isn’t getting his ideas from the telly lol) this is how they start, enjoying inflicting pain on animals and others when they are younger etc, quite a few have those early symptoms.

Like the autistic lad who pushed the boy from the Tate modern, I read all about that and his special needs teacher said he used to enjoy causing others pain and misery when he was younger.

Seeing how he is at 9 makes me worry for him as an adult.

Danni, that sounds v tough. DS doesn't generally hurt people at school. School have commented before that DS enjoys any attention - it doesn't matter if it is positive or negative. So they struggle when his behaviour is challenging because he laps up the attention. Fortunately they have stopped sending him to the head teacher as he almost regarded that as a treat. I guess, hurting someone really directs their attention to you...not that I can see how I could give DS more attention.

I also have the same thoughts dimples

I get he can’t control his impulses (hello adhd medications, time you did your job!!) but where do the thoughts come from. What makes him think like that? What makes him want to do these things in the first place? Some of the things he does are really cruel aswell.

I get they often can lack empathy, don’t think like we do, they can’t put their self in other peoples shoes, I totally understand it all.

I’ve tried to help him understand all of that. The work I put in to help him grasp it, is draining!

So yesterday he broke his teachers glasses because ‘he didn’t want her to see.’ I asked him what he would feel like if he couldn’t see? we spoke at length what we need our eyes for, how would he eat his dinner up if he couldn’t see his food, how could he ride his bike if he couldn’t see where he was going, how could he play with his friends if he couldn’t see them,

how would it make him feel if he couldn’t see and do all that? He said sad, so I said that’s how his teacher would feel too. I then told him that if he breaks another pair he would be using his own money to replace them. His answer was I’m going to break 10 pairs and pay for 10 pairs. I just give up.

Danni, I do worry about others getting hurt. It's so hard when your child's behaviour is so at odds with your values and beliefs.