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?

[hazeyjane]

',The park visit with so many goes on this and that piece of equipment? That parent has normalised that child's approach. So that child thinks it is acceptable. You cannot accept that. It gives the completely wrong message.'

I don't know if that was aimed at my post about the swings, but it was not like that at all.

[saintlyjimjams]

No - I think it was mine hazeyjane. Which was why I explained that ds1 had pretty much zero language (except I want sweets) at the time. The reason I hadn't dealt with that pattern was because that park was always empty - that's why we went there - so there was a) no way to teach it (ds1 had no language) and b) any pattern replacing it might have been worse so what was the point of tackling something that allowed him to access a playground - once he'd done the 2 to 3 minute routine he'd stay there for half an hour - and enormous length of time for him to stay in one place at that time - most activities lasted minutes.

[YouTheCat]

Saintly, your ds sounds a lot like mine (who is 19 and in fulltime adult care).

It's amazing how much he has come on and he can now cope with a short supermarket visit which would have been totally out just a few years ago.

Anxiety does have a huge part to play in how well things go when he's out and whether he will meltdown or not.

It's just never cut and dried and depends on so much.

[MumBoots]

My DS is on the spectrum. Sometimes he copes OK with shopping and I am lulled into a false sense of security. Then he has a bad day, and suddenly its a nightmare and I wish to God I'd never brought him.

Whatever the reason they were there or how the mother does or doesnt treat her son, that sounds so stressful and its a shame nobody stepped in. But not surprising. I remember DS having awful meltdowns in supermarkets when he was younger and people staring, head shaking and making bitchy comments. Hard to imagine how horrible that feels unless you have been there.

[mymatemax]

Why is it always as holidays approach that respite goes tits up?
Could it be a bit of a hormonal surge too adding to his anxiety!

[saintlyjimjams]

The surfing btw has been life changing for ds1. And something I never thought would happen. The first year it was offered he was 8, but he had a very fixed routine at the beach - had to walk a certain route, so unless we coincided exactly with timings I didn't think it would work. I also thought he would not wear a wet suit and had no idea what surfing was. Never in a million years did I think he'd end up surfing the way he has. It was tiny tiny steps though, and like everything took years.

Incidentally we had big progress this year. Ds1 has always been one for 'go to the beach, do your activity, go home'. We managed to add in lunch then home a while ago, then this summer we managed 'eat lunch in your wetsuit then get back in the water before going home' - wahay - I have waited years for that.....! We may actually spend a proper day at the beach one day :)

[saintlyjimjams]

Yep YoutheCat - anxiety is our biggest problem now - far more than the SLD's or the actual autism And it leads to behaviours - then suddenly everything is hard.

True mymate - although this has been rumbling for a while, just completely broke down the week before the holidays - oh deep joy!

[HamEggChipsandBeans]

BringMeSunshine2014
Ham you need to re-read your own posts. Please, take note of how many times you say someone else's approach is wrong.

Thank you, but I have re-read my posts. As I stated, my posts were based on my own personal experiences. I have spent 18 years dealing with ASD, dyspraxia and many other complex SEN issues in my immediate and extended family. I also grew up with two brothers with severe autism. One of my brothers actually lives in a flat but has carers now, he is in his fifties. So in reality this means I have dealt with ASD as a younger sibling and as a parent of children with ASD.

I have already stated that I understand that every person with ASD is unique and that there are very many levels of ASD. I have merely stated what has worked for me, the type of approach I took with my children as a day to day coping strategy and how I have been proactive in getting them ready for leading an independent life.

For example, I was not the only person who posted about how it takes a slowly-slowly approach over a very long period of time to achieve a goal. I don't know when I posted this approach with regard to shopping or visiting the park that I seemed to get such a response. It does not matter if it is linked to how a child plays at a park or anxiety about visiting a beach. The approach is still the same.

To be honest, I find it odd that I am being attacked for not only having an opinion, but also then defending my posts.

[ImaginaryPoster]

Our sainsburys opens up an extra till if someone is clearly struggling, shame they don't do it in every store. The checkout supervisor then makes sure they are the only ones at the till (so the till person doesn't then end up on the till all day) and will even pack for you so you can concentrate on the child.

It means sainsburys is my only supermarket I will step foot in with DC2 and 3.

[Milmingebag]

saintly being repeatedly assaulted by someone with autism/anxiety is not an excuse to allow for it to continue. It simply is not on to live with that level of physical abuse.

I hope you get some decent input so this stops happening to you.

When you are a carer it's very easy to lose the fact that you are a human being with the right to live in a safe environment.

I have a child with autism and have experience of this behaviour and it's corrosive effects and sometimes you get so lost trying to anticipate the very complex needs in everyday scenarios that you forget about your own.

[Goldmandra]

The park visit with so many goes on this and that piece of equipment? That parent has normalised that child's approach. So that child thinks it is acceptable. You cannot accept that. It gives the completely wrong message.

There needs to be a balance between helping children with ASD to cope in the real world and have the skills to be the most independent they can be and allowing them to engage in the experiences that fulfill their needs and offer them a decent quality of life.

it is possible to forcefully normalise the behaviour of children with ASD to such an extent that they are unable to explore and express their own needs and feelings and some have spoken out as adults about the damage they feel this did to them.

You can and I believe should accept some behaviour that meets a specific need of that child, especially if that behaviour is a response to them having been in very stressful situations immediately beforehand and it is an acceptable method or regrounding or self calming which avoids a meltdown. Powerful, unrelenting pressure to conform and suppress natural behaviours can be harmful to mental well being.

I am not accusing anyone of damaging their child. I am sure that every parent on this thread who has a child with Autism accepts some level of stereotypically Autistic or controlling behaviour from their child at some point in order to allow them respite from the pressure to conform. I just think it is important to acknowledge that there are reasons behind the way children with Autism behave and we have a responsibility to meet those needs as well as fulfilling the longer term aim of helping them to learn to adapt to living in a world of NTs.

[saintlyjimjams]

Milmin - physical behaviours are pretty unusual for ds1. We were having about one episode every six - nine months or so until repsite fucked up and it all went pear shaped.

When I ended the first week of holidays bruised to buggery I told SW, CAMHS and some big wig manager in the council. They all said 'oh well' basically and have left me to get on with it. And yup I felt utterly abandoned especially as it was their fuck ups in the first place that led to the situation & anxieties and behaviours.

I have a stage 2 complaint in, things will happen in September, I have photographed my injuries and will make clear that I hold them responsible for them.

But they need to sort out respite - and I can't do that.

Luckily ds1 calmed down for a few weeks (not so great again now - but not so long before school starts again - and I expect it to calm down again then).

[LottieJenkins]

Wilf used to have meltdowns when he small in the supermarket where i used to work. All the staff knew what to do and advised customers not to stare. One old lady however came over took one look at him and announced:-
"That young man needs a good slap on the backside!"
I replied that she needed to learn to mind her own business and picked Wilf up and carried him away leaving her to do a very good impersonation of a goldfish out of water!

[1sneezecakesmum]

I would have moved of course but I would also have offered to pack her purchases for her if she was able to take her son away from the queue to a quieter area for him to calm down. Of course she would have to pay

Aldi and lidl are brilliant for letting people with a couple of items queue jump and I've often done it myself.

Big busy supermarkets seem to bring out the worst in people with no one giving an inch and just enclosing themselves in their own selfish bubble. Thankfully it also seems to discourage staring provided no funny noises or screaming are happening!

[Milmingebag]

I think the thing is that carers of children with autism are repeatedly given the message that it is acceptable for you to be routinuely physically assaulted. It doesn't matter if it's every six months/nine months. Once is too much.

If the person hitting you wasn't disabled they would be removed from the family home/prosecuted.

Often the professional response is to deflect by focussing on how you responded in a situation ( thus putting the blame on the carer who is the victim of assault) instead of accepting that irrational behaviours aren't predictable and able to be anticipated every time and what has occured is assault.

The mewing response of 'that must be extremely difficult' and other such platitudes to placate you are patronising and dishonest.

Once your child is a young adult they can physically injure you with lasting repercussions. I was punched on the top of my head and lost some vision in my eye during a completely unavoidable meltdown.

The people you have contacted for help who are paid to safeguard you and your child/family have failed to do so. I'm glad you have a complaint in.

They are appalling in their lack of appropriate response but they take their chances because whatever you may be able to claim financially as a result of their negligence will be a lot less than putting the appropriate care in place to safeguard everyone.

That's actually what 'care' comes down to in this country when you strip it back.

[saintlyjimjams]

Yes I agree with that Milm

In this case the rocketing anxiety which has led to the challenging behaviours has come from respite breakdown & their cock ups (and in fact all instances of challenging behaviours this year have come from respite fuck ups - a pattern that has been repeated at school - i.e they have also been on the receiving end of challenging behaviours due to respite cock ups). At the moment respite won't even acknowledge mistakes have been made. There wasn't really much in the way of serious CB's before. I am reluctant to medicate when I know the issue is things that happened at respite (if this were an NT child he would be having counselling and prob. be diagnosed with PTSD as well).

If we get no luck at stage 2 I will go to my MP & local councillors.

I am due a carers assessment with my GP as well, so will talk to her soon.

The main problem seems to be there are no other services available, so all they do is say oh dear.

The situation this summer is not workable in the long term though - it really has been impossible and is impacting on the younger children.

From now on I will log every instance of CB's I think. Annual review and medical due soon as well - it will all be noted & I'll start them making plans for next summer. It all finally broke down so close to the summer holidays that we were left stranded.

I am very cross - I just can't do much this summer - I will start the ball rolling in September though. It can't continue. We had a brilliant summer last year -relaxing and chilled, we need to get back to that.

[Deverethemuzzler]

Even if you accept that teaching a child with autism to do something that they hate i.e. putting up with someone standing behind them in a queue, every day is not a school day and sometimes people need to do what they need to do.

It is not possible for a parent to be consistent 100% of the time even if they want to be. It only takes a child to be coming down with a cold, for it to be the school holidays, for the wind to be howling outside and that supermarket trip becomes a whole different ball game.

It is also very hard to work out what behaviours are hard wired and which are habit in any child, let alone one who is non/pre verbal and has LDs.

You will never 'teach' my DS to understand questions and explanations put to him in a certain way. His brain does not work that way. You can't make him understand, you have to talk to him in simple clear and very short phrases.

No amount of chatter and flash cards will change that.

[hazeyjane]

MrsDeVere, you have said what I was trying to.

Ham, I think it is less a case of you being attacked for voicing your opinion, but that your post seems quite absolute in it's approach.

[EBR]

Take a look at the article below. It is about ADHD but it could just have easily been written about autism (my son has Aspergers). If it teaches one thing it is for us all to give some understanding - and so many of the posts here show that you do. It costs nothing to the giver but it is so very precious for a parent struggling with a disabled child or a child with special needs to receive.
www.huffingtonpost.com/kristen-mae/what-you-dont-know-about-that-wild-unruly-child_b_5669892.html?utm_hp_ref=mostpopular

[RandallFloyd]

Saintly, I've sent that video when you've posted it before and it honestly brings me to tears. It makes me want to shout I GET IT! I get what a huge thing it is.

My DS is only 3 and is nowhere near as severe as your DS but the beach is an absolute no no. He won't even get out of the car. I have to carry him, kicking and screaming and sit him on the blanket.

The sea is no good either, it took 45 minutes to get him to paddle 6" into a walk-in swimming pool so the actual sea is not an option at all. I also can't get him in arm bands or a swim vest so even if I could eventually get him in the water I couldn't let him do anything.

This year though, we have actually played in sandpits. I was almost in tears watching him build a sandcastle. The idea that he might get on a surfboard one day is just overwhelming.

for you and your lovely boy.

[marne2]

I hate going food shopping with my dd's ( both on the spectrum ), dd2 loves shopping as long as she is getting something for herself ( sweets, toy, magazine ) but when it comes to paying it is hard work, she hates waiting although she is getting better at it, hates noise or people standing too close to her. Dd1 on the other hand will talk to anyone, gets too close to people but also hates waiting.

I wouldn't expect anyone to let's us go before them because of the dd's being autistic but I would hope they would be understanding if I asked them to step back and not get too close.

I only take the dd's food shopping if I really have too, if I can I will go at night once dh is home or I will do it online, if we just need bread and milk then I drive to a small local shop and I leave the dd's in the car whilst I run in.

[marne2]

And I have one dd who loves the beach ( would go every day ) and the other one hates sand near her feet or her hands and is scared of going near the sea ( she's now 8 and will now walk a little way along the beach without crying and will sit on a blanket ).

[Firsttimer7259]

Tired mother of severely autistic little girl here - I wish people would offer help in terms of a quick exit from a supermarket etc and leave it up to me to decide whether something is a teaching moment ( in which case I would say thanks but she's learning to wait and so I'll stick this out) or make a decision that right here right now bailing is what we need to do. Instead I often get the impression some idiots even slow down to make it harder. Why is beyond me

[saintlyjimjams]

Thanks Randall - honestly it took years to get back on the beach. We used to drive to one with a sort of paved but nice forest walk opposite (ds1 wouldn't do grass either at the time). We'd park up, try to get him on the beach, he'd run off screaming and we'd do the forest walk then go home. Until one day when he was about 7 he stayed on the beach, then about ten mins later ended up in the sea up to his waist laughing his head off

Funny thing autism.

Yep firsttimer - it's the people who decide it's their role to teach our kids a lesson that irritate me.

[Owllady]

I have only read the original post
But 99% ,of people don't give a shit
I get more abuse, even ridicule than understanding. 15 years in. Sld/autism sucks, honestly. You are this young vulnerable person, confused and trapped in your anxiety and arseholes are too busy about their daily life to think

Well done for being thoughtful. It costs nothing