To find going anywhere with DS (asd) soul destroying

[redsunsetsky]

How do others cope, I am just asking because I am at the end of my rope, he said to me he can’t do anything without me getting at him but in fact I feel I say very little!

No advice but I share your pain.

The fact isn’t that you feel you say very little but that that he feels anything he does results in negative comments from you. It’s bloody hard. One of mine has ADHD and at an appointment, the paediatrician was observing his behaviour. It was only five minutes but I had to bite my tongue so often not to say “watch out for y ...mind x... no, please don’t...” it made me realise that my gentle prompts were just a constant stream of “you’re doing / about to do something wrong.”

How old is your son. When my son was little he didn’t really get a choice but he had to be watched like a hawk, he had a wrist strap so he couldn’t run off but he frequently had meltdowns in public places. He is nearly 12 now and knows his own mind, refusing outings that he cannot. Cope with. We know he is happier at home with his technology so we leave him alone while we do short errands less than one hour. It I’d futile to take him places he can’t cope with it does mean you can’t go on outings like other families we attempted the zoo and it was a disaster. He hates the beach a sensory sand thing, hates the shops. It is so bloody difficult.
He refuses holiday clubs so we have had to get a nanny to sit with him at home, summer hols have been difficult., I have learned you have to parent the child you’ve got and not the child you think they should be.

I find myself slipping into the same pattern with DS if I'm not mindful of it. He'll start stimming or repeating his favourite phrases over and over or jumping or hooting and people will start looking so I end up spending our whole trip repeatedly saying "stop that .... Stop it ..... DS, stop" until we're both stressed out.

I definitely agree with the PP about parenting the child you have rather than the one you think they should be. When I find myself getting into the "stop it" loop I remind myself that he can't help it, I may as well be cross at him for having blonde hair or brown eyes because he has as much control over those things as he does over his behaviour at times and what I'm really cross at is the people who look, snigger, or comment on it. I'm developing a much thicker skin and I'm now at the point where I will tell people who snigger at him or comment negatively "he's autistic and he can't help it, you on the other hand can".

Being prepared helps, even when we're places that he wants to go. He carries a backpack with a bottle of water in to give it a little bit of weight, the weight helps stop some of the sensory seeking behaviours. I put his 'kit' in there so we have it when he needs it. Ear defenders, some fiddle toys, a snack (always, always the crunchiest apple from the fruit bowl), a chew toy, and his tablet with his headphones. If he starts getting wound up then I can direct him to get something from his bag that will help. We plan in breaks too and I let him do what he wants to do at activities so we don't get into a headbutting contest over me forcing him to join in e.g., at the trampoline park he might want to sit in the café with me rather than go jump even though it was his idea to come to the trampoline park in the first place.

I joined the local ASD support group, they have clubs and activities so we go to a lot of those. It's far less stressful when you're with a group of parents and children in a similar situation to yourself. No one judges at those groups when someone refuses to join in or has a meltdown or randomly belts out a single line from a specific song over and over because we've all been there.

What specific behaviours is he displaying that are causing the problem?

How is his reading?
We list everything in the order we will be doing it and give it to him.
It helps him cope, so he knows what to expect.
We also write down a reward for good behaviour so it’s the last thing on the list which we then go and purchase if he’s been good.
This usually works well until I have to do something off list, like if I realise we need petrol!

Mostly thing like shouting with his mouth full, harassing waiting staff, shoving people out of the way, walking into people, being rude.

What's his spacial awareness like?

Have you tried social stories?

I have also massively decreased my expectations. As long as we are alive at the end it’s a success on some level.

Ds has massive anxiety which is an added challenge to going out. We plan things very carefully and make sure that as much as possible he knows what to expect and what is expected from him.

Try your hardest to focus on the positives. So when he is eating nicely look at that rather than just commenting when he isn’t. Provide him with prompts what to say to people like waiting staff.

My youngest doesn't eat when we go anywhere- makes things quite difficult if we want to go somewhere for more than six hours, say. My eldest (also has AS) has improved a lot since going to secondary school- I think the coping mechanisms she has developed for a larger school have helped greatly in day-to-day moving around outside the house. She's much more comfortable with going into the town centre if we need to shop now, whereas a couple of years ago, I couldn't take either of them.
The only place DS can manage in town is the book shop, and last time we went he had such a meltdown (took DH and me to carry him bodily out of the shop, lengthways, as if he were a rolled up carpet!!) that we haven't been back for over a year

If cafés are a persistent problem, would taking packed lunches and eating on park benches or in the car, if you have one, be an option. (Wouldn't have to necessarily be a lot of extra work - if you can afford a cafe I would assume you could afford pre-packed sandwiches, snack pots and so on.)

He loves eating out. It’s me who can’t stand it!

If there's a park or green space in town then that's a good place for packed lunch too. DS will only eat at McDonald's when we're out which I don't want to do every single time so we have picnic instead then he can have a run/roll/hoot at the sky before we go back into the busier part of town.

He loves eating out. It’s me who can’t stand it!
Ah, slightly different
Sorry, I know it's hard. It's one of those many things we just have to suck up, for our children, isn't it? Try to keep reinforcing manners? Some people without autism still have appalling eating habits- might just be him?

We have difficulties with sensory issues, anxiety and potential unsafe behaviour due to learning disability. We don't do activities for children with sn because he can't cope with the other children. We stick to cafes at quieter times only and not ones that attract lots of young children.

It is soul destroying. We tried going out yesterday. Only to have a little walk along the beach and perhaps buy an ice cream which DD enjoys but she was undecided whether to go which started a meltdown. Wanted us to make a decision so we said let's go and see how we do. We got halfway as she had complete histrionics in the car. My DH and I just sat in our living room last night crying our eyes out. Honestly I wouldn't wish this on anyone.

I have also massively decreased my expectations
This.

And making sure day trips are out of the ordinary so we're not likely to meet anyone we'll ever have to see again