i am so upset

[jenk1]

i was shopping in my local ASDA earlier. I kept hearing this screeching noise, after a few minutes i decided to investigate it further and walked up and down the aisles.

At the magazine aisle i finally found the cause, there was a family with 3 children, one of the children - a boy who looked about 6/7 was sat in the seat of the trolley.

He was screeching and banging his head with his fists and groaning.
It was clear to me that this little boy was severely distressed and he seemed to be autistic, quite severley.

His parents were ignoring him and looking at things and all the while he was sat there screeching and crying.

I put my basket down and fled to the toilets and had a cry.

When i came out i decided to do my shopping and i couldnt hear the noise anymore.

My DS is Autistic - high functioning and i would NEVER EVER take him to a supermarket on a busy saturday afternoon and certainly not have him distressed like that.

I felt so sad for him, and very angry to his parents for just ignoring him.

Hope i havent offended anyone with my views but i couldnt stop thinking about it and started to get upset again when i was telling DH in the car on the way home.

Poor boy, surely he was too big for the seat in the trolley, he was probably in pain

Poor you Jenk1

It is just a reminder to you what a fab mum you are

Yes jenk it is awful to see a child that is obviously in so much distress, but lately I am having the same problem with my ds in terms of sitting him in a shopping trolley. He's 5 now, and so is becoming too big to sit in one, so my only other alternative is placing him in one of those disabled chair trolleys. I just can't allow him to walk around because the supermarket would be trashed. But I just feel uneasy placing him in one, TBH I reckon it's because I'm too concerned what others would think, he can walk and talk so others would ask why the hell does he need one of those. I normally go shopping when he's at school anyway but sometimes I have no choice but to bring him along.

I've done it several times. Ds1 would go in the trolley aged 5 because otherwise he refused to go in the shop. He would then scream because he wanted to see the hoovers, then scream because he wanted to see the sink and then scream because he wanted to go back to the sinks etc. The only way I could do anything was to ignore him.

I then didn't take him for a year (but it took about 3 trips to realise it wasn;t a one off- he used to love the supermarket - and it wasn't the busyness that upset him it was the fact that he had such a fixed route in his head which I didn't know or understand so got "wrong")

I often do have to ignore ds1 when he screams. And I sometimes have to ignore him when he is hitting himself.

Severe autism is very different from HFA, so don't be too quick to judge.

One thing I have learned - but it took a while- is that foten trips that go wonderfully the first time are disasters the second because of this fixed rigid route thing that would get set up in his head the first time we went. But then we wouldn;t know what the fixed rigid route was and so many many many times when we go out in public it is accompanied by screaming. It's just life. I don't know what the answer is- whether to keep trying, or only go anywhere once? The problem is we don't know what the "correct" answer is unless we try it- sometimes it's a dream, otehr times it sounds like this scenario- but it is impossible to predict why way it will go until we're there.

Ds1 is 5.5yrs old but looks older. He and ds2 both still ride in the supermarket trolley. Ds1 is physically capable of walking but includes riding in the trolley as part of his routine.

Ds1 is much more calm these days but ds2 is a different story. I frequently have to just get on with what I'm doing and ignore the horrific screams coming from ds2. Attempts to comfort or calm him usually fail when he's in a rage so it's far better to just get on with things so that I can get him home asap.

aahh maybe its not the HFA/severe bit that's different- just the children

DS1 used to be the calmest, most passive serene child there was. ha! No more. Actually had to iterally drag him home today because he got stuck on an estate agen's spinny (metal!) sign and kept trying to go up and put his face right near it (spinning metal- no way!). Kicked up mega fuss when I wouldn't let him and I had to hold him by his waist belt and try and march him screaming (I prefer marching to dragging, but often they run into each other). I'm sure it looked terrible, but I don't reallly see that I had a choice. The spinny metal thing would have made a terrible mess of his face, but it was spinning so there was no reasoning with him at all- he wanted to stim right next to it.

poor parents

based on everythign I've learned on this board I have, I think, a far greater understanding (on a surface level of course) of what might be going on with strangers and their families.

I must admit I am quite surprised to see someone here actually professing anger at the parents, especially with your own personal experience at the high functioning end of the spectrum, I don't think I'd feel like that and I don't have the experience you have

(I havene't phrased that right .. I don't mean to be insulting but am too tired to work out how to say it properly so hope you aren't offended Jenk)

Jenk - I absolutely hate going to the supermarket with DS and I promise myself each week that next time I will leave him in the car with his dad or shop online, but I'm crap at planning anything so invariably end up in the supermarket with DS.

He doesn't head bang or screech, but treats the supermarket like an adventure play ground, throwing toilet rolls at other children and hiding behind the deli counter. I only wish I could strap him in a trolly but he stiffens his legs and kicks when we try. If we do get him in there he screams and swears the whole way round the shop. Then we can't get him out as he doesn't understand that if he wants to come out he has to work with us. DS is only 3.10 so God only knows how some of you with 6 year olds manage it on your own.

It probably was a bit stupid to take this child on a Saturday afternoon when one of them could have kept him with them at home, but I don't really blame them. We tend to do everything as a family because it's so hard to cope with DS on our own. Maybe they're like our family - mum who doesn't drive and dad who overspends so have to go together. Maybe they are crap at planning anything like me as well. Maybe they are just getting on with their lives as best they can and putting up with thier DS's behaviour because they can't change it.

Ds2 is HF but has the most horrendous meltdowns when things are 'wrong'. I suspect that even if he was NT he would still have a terrible temper but it somehow seems to be magnified by his ASD. Poor ds1 is often on the receiving end.

My dd2 who has severe learning disabilities often screams her way round Tesco's and we get a lot of strange looks, particularly as she is often chewing on some non-food item or other (eg the packaging of something). I'm afraid I do have to ignore some of it otherwise the shopping just wouldn't get done. I had a helpful man tell me the other day that I should have a tantrum on the floor like the woman in the BBC advert with the tantrumming toddler. I think it's a question of getting through it as quickly as possible, which is actually easier on everybody in the long term.

Liulypond- I don't take ds1 anymore. Since having ds3 we've done the opposite and now do nothing as a family. Today was typical- I took ds1 out in the morning whilst dh stayed at home with ds2 and ds3, then he took ds1 out whilst I took ds2 and ds3 to the supermarket!

I do think it is important to keep exposing ds1 to these experiences, but we now only do them as learning experiences. So if it is quiet I will take him to the supermarket to buy 1 item. But if he kicks off we bail out. Today I took him to a newsagents to buy chocolate buttons but only because I could see there was no queue. I wanted to go to a bookshop, but could tell he wouldn;t have been able to cope with that so we didn't.

I think you do what you do and what you can deal with changes at different ages. DS1 used to adore the supermarket. He was quite ahppy in his trolley watching everything, but then suddenly aged 5 it was off the agenda.

We are very lucky, Ds1's school places a lot of emphasis on going out into the community and they go somewhere in public at least once a week (mcdonald's last week- and he ordered chips and a drink with PECS ) It was going with school to the supermarket that got him out of the trolley making practice buying of one item a possibility.

CT- ds3 has a mega temper. I am hoping to god he isn't autistic! As the combinations I don;t think he is. Although he hits his head when cross (juslt like ds1- I never know whether to be worried that he;s hitting his head or pleased that he's copying!)

Baka - excellent Were the staff in McDonalds primed beforehand or are pecs self explanatory? Fantastic achievement and brilliant that his school are actively teaching this stuff.

I expect they were forewarned- but they're self explanatory- little cards passed across with "i want chips" on them etc.

I have autism myself albeit Aspergers Syndrome and the reason i reacted so strongly was because i knew how this child was feeling, when i was a child my parents took me to places that was just too much whether it be noisy or too many people and i used to scream and cry.

I felt anger towards the parents not because i thought they were bad parents but because i had empathy with the little boy who was distressed, I KNOW FROM MY OWN PERSONAL EXPERIENCE how this child must have felt even though my own personal autism is at the higher end.

For someone to say they are surprised at my comments well im really sorry maybe i didnt word it correctly, i did feel anger towards the parents but then i look at things from a different angle is suppose.

I wouldnt take my DS shopping on a busy day because i UNDERSTAND perfectly myself what he would go through having been through it myself, as i have AS myself then i feel justified in feeling and acting the way that i did, if i wasnt AS then probably i wouldnt have reacted as strongly as i did, hope this makes sense

Yes, but AS and severe autism are very different. Roz Blackburn thinks they are an entirely different thing, and I tend to agree- from listening to her, from observing ds1 and from watching HF children of friends. Ds1 doesn;t react to the sensory side of supermarkets, but to his compulsions. His compulsions cause screaming, but that can happen equally often at home. sensory stuff causes stimming- too much stimming can lead to screaming, but generally he doesn't actually mind busy places as long as he's free to do what he wants.

I had a adult with AS around to visit all afternoon yesterday. I think he sees himself as very different from ds1. I think he is very different from ds1. They find different things difficult/easy. My friend with a HF child can't cope with big rooms full of people because there are lots of people looking at her. DS1 loves rooms full of people- he doesn;t understand that they may be interested in him- they are just lots of people to climb on, sniff, touch etc. He gets hyper and goes over, but doesn;t get distressed. A neighbour leaving their front door open distresses him, but not busy places (unless busy=queuing)

Baka im not in anyway disputing the fact that HF and severe autism are different its just that i looked at the situation today from a different viewpoint.

Im sorry if my words caused anyone upset, i honestly didnt mean it.

well you didn;t upset me! It's just that constant screaming is a feature of our life and I can even tell what it means. For example the clinical psych was visiting this week and ds1 started - we were in the kitchen and she said 'do you need to check on that? i said I wil but that's screaming at the TV becuase it's "wrong". Went in and sure enough it was big cook little cook doing the bit he always screams at (not sure why- he used to love it). There's nothing we can do really when he gets like that he'll scream until that bit is over. Sam,e as traffic lights- red ight= screaming, sometmes helped by us counting but not always. He doesn't realy scream for sensory reasons- he'll just refuse point blank to do something (eat, enter a room, walk under trees, walk on sand etc). The screaming is more communication than fear in his case.

You haven't upset me either. Your POV is just as valid as everyone elses, and I didn't know the differences between AS and severe autism anyway. I do know that my DS shouts when he's stuffed in a trolly because he wants to get out but I try to tune him out TBH as I can't pander to what he wants all day or I'd just sit indoors all day drawing numbers for him or something just as boring.

i have been awake all night thinking about this thread, with hindsight i could have chosen my words better i think.

I think i reacted so strongly because it brought back all my childhood memories,memories that i have pushed to the back of my mind since childhood, i never ever go out on my own anywhere and yesterday was the first time i went to the supermarket on my own in about 2 years without dh or anyone.

I am trying to integrate myself into public situations because i know that i have to for the sake of my children.

Yesterday with all the noise,bright lights and then the little boy just got a bit too much.

But im glad i posted in a way because now i have learnt MORE new things about AS/ASD and that can only be a positive thing so thanks to you Baka!

No upset here either.

When ds1 was very young the strongest reactions were usually to routines and 'games' being changed. If the sensory stuff got too much he would just switch off and blank it out. Nowadays the strongest reactions are to 'rules' being broken and things not being the way he feels they are supposed to be. He's still not keen on change but with a little advance warning he can usually cope okay.

Ds2 reacts strongly to sensory stuff. I've lost count of the number of times the CDC staff have had to uproot and switch rooms because ds2 has either staged a lie-down protest outside the room and won't go in or has got in the room and screamed the place down until someone switches the lights off. The biggest problem to date with this pregnancy has been that my hospital appointments have been in tiny rooms with fluorescent lights. I have no babysitters so ds2 has to come along and sits there screaming on my knee. Thankfully the majority of my ante-natal care is with the community midwife at the GPs surgery, which ds2 loves because there's a bookcase he likes to lie down in.

I hate taking him into town because the screaming starts if I change the usual route. The last time I ventured out with him it took me 2 hours to go to 4 shops. Luckily dh (un-dx'ed AS) also likes to follow the same routes each time so he and ds2 and ds1 generally have a great time together in town on a Saturday. They usually do the shopping together on a Saturday while I catch up with clearing up all the things that ds2 has trashed, thrown, kicked etc.

Strangely even though ds2 is far more difficult to cope with he is the one whose dx is most likely to be doubted. Ds1 is often calm and is easy to take out to familiar places (strange places not so easy) but no-one doubts that he has ASD.

ive really learnt something this weekend, i have always thought that Severe Autistic children were screaming and crying because they were distressed because thats what i used to do when i was a child and ds does now, i didnt realise that this could be a way of communicating.

I wish i had known that yesterday and maybe i wouldnt have reacted in the way that i did.

Or maybe i would have done with the lights,music and too many people.

Last night i thought i had really offended those of you who were parents of severly autistic children and i was really upset, i lay awake thinking about it all night.

I have since read and reread all the messages and i dont think i did, its just that i have a problem sometimes with what i say and how i put it across, sometimes what i say is very blunt and i dont realise that it is- it has caused me major problems in the past

Anyway if i say anything thats too blunt in the future please tell me cos i am really trying hard to improve the way i come across to people.

Thanks everyone

Jenk.

I have read everything. PLEASE PLEASE PLEASE don't be upset with yourself, you woulnever have learned what you have without your intial reaction and then to post about it.

I hope that you can sleep tonight

Jenk, you can't help how you feel or react to something BUT I am also someone who would deliberately practice ignoring such behaviour. Mostly because it IS communication and my way of communicating back is that you don't get what you want this way and sometimes you CAN'T have what you want....... BUT it is important for the child to be taught other ways to communicate AND I would never have attempted a busy Saturday afternoon without a get out plan. We do supermarkets on a Saturday afternoon but one of us can always leave and I take DS shopping on my own but only for bits and pieces.

jenk jenkyou didn't offend me at all- I wish you'd seen my post last night. Honestly sometimes when we're out and about ds1's behaviour can look dreadful, and can appear much worse than it is. Really if he cannot tolerate something for sensory reasons he just won't enter! I'm with Davros- we always have a get out clause these days! Honestly you didn't offend.