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It's not going to get better is it? (Autism)

(29 Posts)
Cheeseontoastie Tue 31-Oct-17 09:57:11

My daughter has autism. She's 6. The only way I can describe it and I know it comes across as horrible but it's like having a toddler who has the strenght of a 6 years old. She throws herself on the floor. Has tantrums. Is vicious towards her younger siblings. Crys hysterically if something happens that she doesn't like. Can be as easy as not getting a toy from the shop for example. She's very able in other ways and can read and write, but has low receptive communication. I just find it's getting harder, everyone told me it would get easier as she gets older but it hasn't. It's got much worse. When she was little if she was having a tantrum I could pick her up or put her in the pram. Now she's too big for me to even restrain her and throws herself on the floor screaming. People look at us and laugh. I've heard it. Yesterday I was banned from a shop due to her behaviour, despite me explaining her condition they didn't care/understand. I've just been pulled up by the school this morning to say she was climbing the book shelves yesterday and bit a member of staff. It really isn't going to get better is it? Every day feels like a struggle I just don't know what the future holds.

livpotter Tue 31-Oct-17 10:40:58

This is something I’m worried about too. My DS is 4 suspected ASD. He’s already getting too strong for me!
Not sure I can give much advice but we are working a lot with him on waiting, turn taking and trying to filter his tantrums into something less destructive. I think it is going to be a long process but I’ve found he is starting to understand and be able to cope with more as he gets older.

Cheeseontoastie Tue 31-Oct-17 11:28:04

Thanks for you comment. Dd is definitely too strong for me now. I couldn't pick her up off the floor or anything like that. She does this thing also where you walk towards her and she will run. So your left chasing her round the shop. (Difficult with a pram and 3 other kids!). Just so tough.

livpotter Tue 31-Oct-17 12:06:24

It is really tough and not helped by people laughing or being rude. I basically don’t leave the house if I have both the kids on my own as I can’t trust DS not to run off.

I once had someone helpfully tell me that if he started running away to hide so that he would come back. No chance!

I really hope it does get easier for you flowers

notgivingin789 Wed 01-Nov-17 00:15:06

DS is the same.

Honestly, forget the strangers, they would judge, then they would forget about you and move on with their lives. As hard as it is, why should you pay any attention to people who have no use in your life ? When I started thinking like this, I stopped caring what others thought when DS will get hysterical in public.

Your question "Is Autism going to get better ?". What do you mean ? if there's no strategies in place, then the behaviour will not get better.

I am quite strict with DS, I'm not sure if this is a good thing or a bad thing. When DS use to throw himself on the floor, I would pick him up and put him in his room...or if he has a huge meltdown in public. I would place him in a quite/secured spot and let him get it out of his system. It would It was very hard mind you.

Every time you are about to leave your house, go over some rules. Create a visual rule list/ showing what behaviour you expect from her and stick it on your front door. "Good Listening", "good talking" "But if you cry/throw a strop in the store, we would leave and go home (or we will have a break -- and go off to the toilets".

I'm not sure about your DD but with my DS, I realised that he felt these huge emotions but he couldn't express it. We worked a lot on emotions...not just identifying the basic feelings "happy, angry, sad" but emotions such as; "Anxious, worried, scared, bored, shocked, surprised". We would read simple stories and talk about the characters emotions. We also worked on "why" and because"...so eventually you are able to ask your daughter "why she feels this way and what is the reason". Black Sheep press have great visuals on working on "why and because".

You can do it ! It's a long/hard journey. But you and your DD will get there.

Msqueen33 Wed 01-Nov-17 03:26:46

Mixed journey here. Youngest is 4.5 and gotten worse and harder to manage and has limited speech. 7 year old has gotten easier. Toys and choosing are triggers for her but meltdowns are few and far between now. She is still hard work but not as much as she’s more able to reason with now.

vickibee Wed 01-Nov-17 05:57:37

My son is ten and is HF , if anything he has got worse. When he was small he kind of blended in better with his peers but now he sticks out. All his peers have matured and he has the social maturity of a six year old. He knows he is different and struggles to fit in socially, things going wrong makes him angry and he seems to unleash that at home. He has extremes of emotion either really happy or really angry like the whole world is against him. He has finally been referred to ed psych and camps for help. I have been abused in the playground by other parents telling me to keep Ds away fro their kids

zzzzz Wed 01-Nov-17 08:01:57

Ds is 12 and he is definitely easier to care for. His understanding/language is massively improved, so communication is easier. So yes I would say it does get easier and happier.

6 is so very little especially when you consider that her emotional development will likely be a third younger than her chronological age (in ds’s case it was and is more like half). So you are really dealing with the maturity of a 3+ year old. Be gentle with yourself and do NOT be sucked in to others expectations of her behaviour. She is who she is and it’s going to take her longer to mature, but she will and she is supposed to be here just as she is. Autistic people are key in almost all areas of innovation and our lives would be immeasurably worse without them.

brew

Nb I too have a larger family and I would suggest that some of the shittiness is because people can be horrid to Mums they perceive as having too many children and are itching to put down your parenting and your children’s behaviour. Get arsey and push back.

Cheeseontoastie Wed 01-Nov-17 20:43:30

Sorry not had a chance to respond to everyone. There was another incident today with my daughter and now they are talking about excluding her permanently if it happens again. sad

zzzzz Wed 01-Nov-17 20:47:42

What they doing to support her “not doing it again”?

Worldsworstcook Wed 01-Nov-17 20:50:24

We found once we stopped focussing so much on our ds - we gave him more space and a people free area if his own, his behaviour changed. Massive improvement, more reasonable etc. When he needs us he knows where we are and our conversations became with him rather than at him. Sounds stupid I know but in his case he just needed space and it's done him the world if good. We changed him too to a tiny school - 12 in his class - and the one to one with the teacher etc changed his behaviour in school. We get hugs now - something we could only have dreamed of before. Is there anywhere you can give her that's just for her and her hobbies? Any other kids will soon stop resenting her space if they see a difference in her behaviour .

Msqueen33 Wed 01-Nov-17 21:01:56

Oh @Cheeseontoastie what happened? Are you both okay? Exclusion should be a last resort. Does she have adequate support.

Worldsworstcook Wed 01-Nov-17 21:04:52

I must admit I struggle when people say they are strict with the asd kids. We've tried strict, maybe it works for some but not any I've seen. What works with 'normal' kids doesn't work here. Asd kids are not round, they are square and you can't make them round. We tell our 12 yo IT genius DS he runs on Mac IOS software when everyone else runs on Microsoft windows. And he understands that. School in your case don't appear to be the most understanding. Our DS has dyspraxia, dyscalulia (dyslexia of maths) and ADD - (not hyper). His prev school refused to acknowledge he had issues but his new principal said he was the worst case of an overlooked child she'd ever seen. A classroom assistant would be perfect if you can get the school to ask for the funding. Someone to distract her and help her because that's what she needs help, not complaints and criticism. 4 yo on DS has transformed. He's gone from an extraordinarily unhappy and dysfunctional lad to a wonderful boy who will, with help, enjoy a relatively normal life. There is hope. It's not all gloom! There is much joy if they are helped right. Ask her what she wants, negotiate! Bribe! You may be surprised. Or maybe we have just been lucky.

Cheeseontoastie Wed 01-Nov-17 22:07:14

She has 1-2-1 support but apparently today she was climbing on tables? (She doesn't do this at home) and scratched a member of staff "very badly" on her arm. I felt abit ganged up on tbh. I was met at the school by 4 members of staff without warning. I don't see why they couldn't have called me to prewarn me they wanted to talk as I found it rather uncomfortable the way I was approached. They first told me she was hit in the face by another autitic child today. The same one who has hit her in the face twice before and they assured me wouldn't happen again. They said they would do a behaviour book but I wasn't really clear on what else they would be doing. They kept trying to insinuate that it was something happening at home to cause her behaviour but she is not violent to me nor any other adult and never has been. Both incidents happened at school since being back after the half term (no violent outbursts before this) feeling pretty upset about it tbh. Don't know what to do as she does love school so if she is excluded it will be hard for me to take her younger brother to the school and bring her home which she will find distressing, they seemed very quick to suggest exclusion which I agree should be the last resort.

zzzzz Wed 01-Nov-17 22:22:44

Do you have parent partnership in your area?

Worldsworstcook Wed 01-Nov-17 23:05:15

Well I don't know about England but I know in NI you can't exclude a statemented child! I suspect school is scapegoating you. DS previous school used to use the ganging up technique you mention here. It was a wonderful way of marking you and your child as troublesome in front of the other parents. I'm very lucky to have a no sh*t hubby who would fight to the death for DS. He actually made his nasty b*tch of a teacher cry when he asked her if she got pleasure torturing a 7 yo ASD child. If DD getting upset in school it is because there is a trigger at school that they are not addressing. She may need more breaks during class to keep her from wanting to climb, send her on errands to other areas. Make her feel important. I think a lot of sencos earn their money very easily with little input into their pupils.

Msqueen33 Thu 02-Nov-17 00:09:42

Sadly in the UK they can exclude. Even a child with special needs. For my middle dd her learning support got me into the classroom to complain. I felt ambushed. My youngest spent today hidden under tables and crying. It’s tough going back after half term. They need to tell you what they’re doing not sitting complaining about things. What do they have in place that the 1:1 is using? Where’s the senco? Call Ipsea and depending on what area you are we might be able to advise. Check out your Council’s local Sen offer and that should sign post you to services. Exclusion for them is a quick solution and removes having to make any effort. Mine are emotionally blackmailing me so I’ll push to put my dd into a Sen school.

Call a meeting with the senco and ask wht they’re putting in place. See what services could go and back you. Exclusion is a last resort before they’ve tried. My dd hit her LSA but when the specialist asd team came in they said it had happened because she was having a meltdown and they got in her face (she doesn’t hit at home). As my mum says you have to be a tiger Mum! But it’s hard when they basically make you feel like shit all the time.

zzzzz Thu 02-Nov-17 07:36:33

I do think children with disability should be able to be excluded. That said I too have found teachers particularly gob smackingly unprofessional.
The ambushing is particularly distressing. Can I suggest always asking them what their plans are to support whatever behaviour it is,what they tried and what they are going to try next. Then email when you get home with your understanding of the “plan” and what happened. It tends to stop people getting gobby grin

vickibee Thu 02-Nov-17 11:24:21

if the system wants ASD kids to attend mainstream then surely adjustments need to be made to accommodate their specific needs. If the child was in a wheelchair adjustments to the physical environment would be made but because the disability is hidden they are treated in the same way and expected to behave in the same way as NT kids. Their sensory, communication and emotional needs are completely ignored = challenging behaviour = exclusion

zzzzz Thu 02-Nov-17 13:09:49

Lots of schools are truly inclusive.

Cheeseontoastie Thu 02-Nov-17 18:28:10

I have another meeting with the other senco tomorrow. (She only works Monday to Friday, the other one I seen on Tuesday works from Tuesday-Thursday. So I will see what the other senco has to say tomorrow. This hasn't been the first issue I've had with the school tbh, things like telling me they couldn't take her on a school trip for example.

zzzzz Thu 02-Nov-17 19:40:58

Have you got a list of what you want to achieve?

notgivingin789 Thu 02-Nov-17 20:05:18

Worldsworstcook

I battled with the "should I be strict..", "should I not be strict ?".

However, DS was going through a terrible hitting phase, it was awful. It got so bad that I was worried that if it continued, I would consider putting DS into a residential setting (seriously ! This crossed my mind). We went through CAMHS briefly, we spoke to the NAS, Autism professionals..we tried numerous strategies ...not paying attention to the behaviour ( the behaviour got even worse when we ignored it), we removed triggers, we tried replacing the behaviour. Nothing worked.

At the end of the day, I didn't want it to become to a point when DS reaches his teenage years, becomes increasingly violent and I can't cope with him at home. As a last resort we used the "NT" strategies and it worked..whilst also working on DS triggers, identifying emotions, giving him a calm space to unleash his anger etc etc.

I believe all ASD children are different and respond to all strategies different to others.

Worldsworstcook Thu 02-Nov-17 21:03:52

Notgivingin 789

I apologise if I sounded judgemental. Reading back I see your point - I'm the first to say they are square where others are round. He's never been an outright hitting child - more into nipping with his teeth but stopping before a full bite! I admit physically I've had it easy with him - but emotionally we parents all share the same rollercoaster. Sorry again.

user1496620816 Fri 03-Nov-17 17:06:02

Just want some advise from parents with AS children. My son is five and in year one since starting school he's had many incidents at school involving pushing he pushed a teacher today which is first! At the end of foundation school report stated that he was emerging in 15 EYF areas. He's been referred for AS assementbut still nobody actually tells me what they think is wrong with him I've read so many things on ADHD, autism, Aspergers etc and he sounds like he has some symptoms but not others. He's not great socially but has friends and plays with other children. I don't find him hard at home or when we go out he ocassiinally has temper tantrums usually about going to bed. The school says he's had tantrums at school when he doesn't want to do things. I really just want some answers from people who are going through the same sort of thing, thanks

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