Woman in sainsburys with autistic son....

[Pinot4me]

I joined a queue in sainsburys earlier today. There was a woman with a baby in a buggy (probably about 2 yrs old) and a boy of about 7/8. The boy was really agitated and playing up and the mum asked me if I would mind queuing at a different till as her son was autistic and was having a really bad day and he hated having people behind him (or crowding him). Tbh, I didn't mind moving at all as I could see she was struggling, so went to the till on the next aisle. The same thing kept happening as it's a big, busy sainsburys and, for obvious reasons, the queue she was in was the shortest. She politely asked everyone who joined he queue to move away. There were 2 people in front of her...I just can't believe that nobody let her go in front of them...she was really struggling and the boy was getting more and more distressed. I've never come across anything like this before...the cashier could see what was happening. Should she have offered help? It made me realise that we take he simplest things for granted. Surely someone should have offered to let her go through first? I definitely would have done if I had been in front of her...would you?

We had real problem with flooring as well - especially carpet to wood. We ended up using BIBIC therapies. So had a box of different textures 'stepping stones' and different heights as well (telephone directories are good) and each night we'd get ds1 doing stepping stones - carpet tiles, paper, carpet remnants, plastic, directories, bits of wood. It took an age, but did seem to help.

Saintly, you're doing a fantastic job. Please don't let anyone make you feel like you aren't!

tinkly - most of the time ds1 likes shopping. So I go quite a lot with him (now - years ago I just shopped at night or via internet).

The problem with his panic attacks (which are new - and probably related to respite breaking down), is that they come out of nowhere. I think they are related to sudden memories to do with respite. They just happen to have happened twice in the supermarket recently - but were not triggered by it (well I don't think they were). They've also happened swimming, on a walk, in the car, at home....

We need to fix respite... but until we do if someone does offer us a queue jump I'll take it unless I think it might make him kick off more.

Sorry, was doing other stuff so rather late in replying to the reponses to my posts. I apologise if I miss out points that were made to me. Please feel free to holler if I have not responded to any points raised about my posts.

I totally understand that every case of ASD is unique. I also understand that what is achievable for every child is totally unique as well. I can quite understand that everyone who has an ASD child has different challenges and coping strategies. I also understand that not everyone who is ASD will go on to lead an independent life and may or may not need carers in adult life.

I was just merely trying to point out that, IN MY EXPERIENCE, these are the strategies that have worked for me.

I only posted about the supermarket scenario because I have been in exactly the same situation. Otherwise, I would not have posted and been so specific in my response. I had exactly the same, although with my son he could not cope with even the high-shrill "beep" of the till scanning the products. He would be in meltdown mode by the time I would be packing and paying.

I have to say though, for all those of you that are posting along the lines of "ham, you don't know my child or the level of my child's ASD" well, you don't the level of mine either, do you?

Sometimes, and I find this in RL as well, parents with younger ASD children do not understand that parents with young adult or older ASD have a lot of knowledge and experience to share that could be of use... Not all of it, but just now and again some of our "tried and tested" ways of coping are brilliant and could help others...

Yes but, sorry can't remember person with 21 DD's name, it depends on the individual. I have a disability too and do far more than people expect, yet I don't cope living on my own and have very limited strength in my upper body. Being strict wouldn't have made a difference. I try my best and do what I can do.

On the other hand I know people who can live totally alone, cok, clean, raise children, but they can't do some of the things I do.

Saintly I hope you don't think my post was critical of how you are with your son. It wasn't intended to be. 'If I've worded it badly and that's how it's come across then I'm really sorry.

My DD and my nephew are both quite high functioning and I think they both had the potential to lead independent lives. Unfortunately my nephew's parents took the path of least resistance and that's where his dependance comes from. This is very different from your situation with your son.

Thanks for all your responses. It makes interesting reading. As I have said, I don't know very much about autism but it's clear everyone's experiences are different. On reflection, and after reading your posts, I guess it is likely that the cashier did offer help (why wouldn't she) maybe the mum was trying to acclimatise the boy, who knows, it just looked like the whole situation was about to explode at any moment and my instinct would have been to let her go first if I had been in front of her. But, she was handling it her way by asking us all to move so I guess, if she had needed 'help' she would have asked for that too! Perception is reality - we live and learn.

not true - I let ppl in in queues in supermarketsof me

I think also please remember that we also need education - I wouldn't know about possibility of a child being distressed in the queue

there's customer services queue she could use as well if she spoke to them

in supermarketsof me = in supermarkets in front of me

ham - ds1 is 15 now. I said you were talking about a different level of autism because you mentioned buying petrol and thinking about picking up milk from a shop. That's a very different level than the one my son (a near adult) is at. There are things we have done which have helped, but tbh when I compare him to his peers - the thing that helped him the most was his language development and I believe that's fairly fixed and not that able to be manipulated by us. Now he needs help with his anxieties and I have no idea how to stop panic attacks (other than fixing respite) - nor do any of the professionals I've spoken to tbh.

ASD is such a massive area. So many levels of impairment, not enough research/resources/therapies. It's better than it was, for sure, but still, we're letting these families and kids down.

My son has ASD and OCD. He's very articulate and has a good sense of humour. He can't dress without prompting. Can take an hour to shower. He has "significant impairment" though to look at him (no melt downs anymore, but HIGH anxiety) you might think he was just a bit quirky.

I think the staff could have made this lady's shopping trip easier. So could the general public. I've been there, when my ds was younger. It's very, very hard. If he'd been in a wheelchair or more obviously disabled, help might have been forthcoming.

Oh please I didn't think you were critical.

I'm actually quite strict with my son - always have been - because he's actually much more secure with firm boundaries than wishy washy changing ones. But some things take a long long time. There are rarely easy answers (more with increasing understanding) and occasionally there are no answers.

Poor woman and little boy that sounds so stressful :(

My ds has been poorly since about mid week with GI problems. Bundled him in the pram and took him to the sainsburys supermarket about a 5 minute walk from mine (busy city no quicker to drive) to get some advice from the pharmacy. He started crying when we got there and people started staring which made him cry even more, took ages to be seen, bought medication after much badgering and waffling from pharmacist, got out of there asap. Got outside and by this point he was out of his pram, screaming and kicking me in the stomach (32 weeks pregnant) so somehow I end up sitting on the floor with him trying to coax him to take calpol (cause I can't see him suffer anymore) which he keeps throwing on the floor or in my face. It goes on...

My point... People just walking passed me and tutting shaking their heads. No one thought to stop to help a heavily pregnant woman clearly struggling and having a bit of an embarrassing moment with an unwell child. I think people were too busy marvelling at my lack of decorum to think to help me.

Saintly, my ds is 14 in November. I too am tired and desperate about the lack of input available! to help these "kids" achieve in basic daily living. I'm also tired of the non-plussed professionals who don't seem to have much to offer. It seems like a postcode lottery too. In our area, there's not much at all.

And to add until this summer (when ds1's anxiety has rocketed), I certainly know children with ASD who were much higher functioning than ds1, but actually more disabled by their ASD because their anxieties were so much higher which made accessing the world incredibly difficult.

When things are working for us I always know we're walking a tightrope and it doesn't take much for everything to come crashing down (as it has for us this summer).

I don't think there's any single answer, and it is often 2 steps forwards 5 back. It's a case of understanding each individual and working towards the best possible solution for them.

Ithoughtofitfirst

Yup Eliza.

I contacted a number of professionals in the first week of the holidays as ds1 completely fell apart. Nothing available except a meeting towards the end of September. I told one we'll be on our knees by then. She effectively said oh dear.

saintlyjimjams lovely video of your boy surfing.

I thought

Love that video saintly

thanks whois :)

Saintly nothing to add as my only experience is patients in my clinic. Just wanted to say love your boy surfing.... X

Ham you need to re-read your own posts. Please, take note of how many times you say someone else's approach is wrong.

By the way, my ds isn't autistic, and is only 4. It is a huge learning curve, working out how to deal with various scenarios as they arise, for us and the professionals, and I am willing to take advice on anything on how to help him cope with day to day life and help him be as independent as possible, but even with the best will in the world, things crop up out of nowhere and we have days where I would hug the person that let us queue jump etc!