Taking autistic DS out and about is wearing me down

[goingslow]

There is little point to this post really, I just need to get it off my chest. It might be rambly.

He's three. Just. Newly diagnosed with moderate to severe autism. I also suspect PDA.

He's very tall for his age, and generally kind, but obviously lacks awareness of those around him. Soft play (which he loves) involves me helicoptering to ensure he doesn't accidentally hurt any other kids, especially those younger or smaller than him. Soft plays with any kind of 'baby zone' are just a no go; any kind of attempt from me to steer him away from these areas and the little ones in them will just result in a HUGE meltdown. Parks when the weather is nice are ok as long as they're enclosed otherwise he'll be off.

If we do anything, ANYTHING that isn't on his terms, he just loses it. Doesn't matter where we are or what we're doing.

He could easily pass for four, even five. I see the looks of others when I try and manage his behaviour and want to shout 'HE'S FUCKING THREE AND AUTISTIC, NOT NAUGHTY'.

When he's at home he's a happy little soul, pottering and playing and stuff. But I am a big believer in getting out. Which we do every day after the school run for older DS. I just find going out and about with him really stressful. I worry that he's going to kick off, and we'll have to leave with me literally wrestling him out the door. I took him to a garden centre to spend some of his Christmas money on a new train and he screamed (and I mean SCREAMED) the place down because he couldn't go outside. If we see a lift, he HAS to push the button. Or he screams. I understand these behaviours are driven by his autism, and that they're comforting to him. And I try so hard to manage it. But sometimes it's just shit and I struggle. I'm new to this and not actually for a fucking clue how to handle it. I know people on this board struggle too, all at different levels and with different things. So I'm sorry for moaning. I have a shitload to be grateful for, and I am grateful.

I guess the point of this post is just me wondering if it's only me that finds outings hard? Thanks for reading.

@goingslow - I didn't say he was screaming at the trains.

You said "I took him to a garden centre to spend some of his Christmas money on a new train and he screamed (and I mean SCREAMED) the place down because he couldn't go outside."

I said "Why couldn't he go outside at the garden centre? Why did you want him to buy a train that he had no interest in?"

I could've phrased it better (I blame ), but my questions were why couldn't he go outside like he wanted, instead of looking at the trains that he clearly had no interest in at the time that he was screaming to go outside. I didn't know any more than you'd put, ie that you'd already bought the train, he loves trains, it was raining, etc etc. I'm autistic, so I'm sometimes quite literal!

@springhappy I'm glad you found that helpful. Social media, Instagram etc gives such an absurdly idealised, highly edited picture of life in any family, I think. I'm the aspie mother of an aspie daughter, which works well sometimes, because I understood her need for repetition, aversion to change/unexpected things/certain new experiences, but caused problems in other ways because our sensitivities and needs didn't always match up, and I also struggle with things not happening as I expect them to! I did understand and empathise, though, with things like her needing a lot of down time to recharge, usually doing repetitive things like watching the same video over and over, or reading and rereading and rereading the same books (which I do, too!). Things like shopping... I just didn't take her unless there was no other option! Shopping is hellish enough even without a child - I hate it! As soon as she was old enough, she would sit in the car and read while I was in the supermarket.

It must be particularly difficult when you have more than one child, with competing wants and needs. With just one, we just adjusted our activities to accomodate what she could and couldn't cope with.

Another thing that might help is 'now and next'

So 'first / now we're go to the shops to buy bread' and 'then next we will go to the park to feed the ducks'

Visuals / photos (even just handrawn shop / ducks).

You can do with anything 'first shops' then 'next pressing lift button'
Keep showing the cards to remind him of the order they will happen in.

We used this with DS a lot when he was younger. It did help alleviate some of his anxiety / wanting to do something he wanted to do knowing it was in the plan, but something else would happen first.

Also - a tick list 'we will press the list button 5 times today' little whiteboard to tick off each time.
And 'now its lift button time and then next its car and breadstick'

If language is tricky for him then hopefully visuals will help.

Yes it does require a lot of planning but if it makes an outing that little bit less stressful it's worth it.

Oh and I've remembered an even more simplified version of this we used - 'hello / goodbye' just to give a bit of now and next.

'Goodbye lifts!' 'Hello car and breadstick'

You get the idea (hopefully!)

Could you go to the trainstation and watch the trains coming in and out. Maybe a ride or two in a lift there. You will find yourself doing things you wouldn't pick yourself in a million years but following his lead.
Know one dm who literally went every day to the station and now and then they rode the train to the next station.

Ha ha, June. That's my life! All the commuters looking puzzled as I stand there watching them come and go in the cold and rain! Although I've also done it for two nt boys as well as my autistic girl! I even found myself in a train forum asking for help with the new Crossrail diagrams so we could extend our backwards and forwards train journeys to the brand new rolling stock. I was properly excited myself. That is the joy of parenting! I remember being extremely bored and pissed off in the National Railway Museum before kids, and now I go on holiday to York so we can go there and get all excited by freight trains.

You could try to introduce the joy of the FlightRadar24 app, @Viewofsaturday ... then you don't even have to leave the house.

@Sethos I agree with that completely, I used to live an incredibly tranquil life with ds who is now 15 and has asd. He is very laid back, enjoys routine and the simpler things in life :) - though he was also very challenging when younger. it was since adding to the family two more dd's that things got a little bit different. Middle dd has sensory issues but it's the youngest with the most challenging asd traits.
Like you I also have asd - awaiting formal diagnosis, so completely understand their unique needs too. Sometimes we all just need time out

Today we went to the Sea Life centre. We've been to various ones before, including this one. I didn't have high expectations but do try to give him more 'normal' experiences ...

He lasted ten minutes. On the good side, for those ten minutes, he actually focussed on the fish through the windows (whilst mouthing the glass). But he found the walk-through tunnel overwhelming, and that was it for our visit.

OP do you have a DP?

Yes I do, he is wonderful. I'm very lucky.

Outings can be hard when dc are going through challenging phases. When you are on your own with both children I would stick to places and situations that you know you can usually manage then on a semi regular basis, whatever works for you, try something more stretching when the two of you can take the children together. I would have low expectations for such trips, try and anticipate any problems and take what wins you can from them. Hopefully in time you will find more places or activities to fit into a regular routine. If you feel your older ds is missing out then take turns with dp to take him somewhere just the two of you so he gets to do things he likes too.

Try not to worry about what people think about helicoptering or how you cope with him when he’s being difficult. It’s likely that you will find ways to help manage his behaviour and find that certain things get easier as he gets older. Have you been offered any specialist parenting courses such as early bird or your local equivalent?

Thanks @openupmyeagereyes. I am awaiting a spot on an early bird course. I've heard really good things.

We had a really good trip out today, just DS and I. We went to his favourite museum. I just let him run around (it was dead quiet) and basically go wherever he fancied. He took the lead. He loved it and was in a lovely little mood all day.

I definitely hear what you're saying re older DS. DH and I do really make the effort to take him out to special places on his own with one of us quite often. It's really nice and it's a break for me too when I take him.

Some great ideas on this thread .
Just wanted to say I'm in exactly the same boat so totally know where you're coming from and how hard it is. Some days I could literally pull my hair out . You're doing great and he's lucky to have a mum like you 💞

@coco2891 Thank you so much Sorry to hear you're in the same boat. It can be so hard, can't it?

Yes I posted here recently about people staring and shaking their heads and got some good advise . My son is nearly 4 and I'm certain we'll get an autism diagnosis. Husband is really struggling to get his head round it all and has had a couple of his own meltdowns which makes matters much worse. I have a 5 year old that's finding this all hard too which breaks my heart, he just wants his brother to be like him I guess and hates having to miss out or go home if lo kicks off.
We've been waiting 15 months to be seen (in 2 weeks time 😬) for assessment after an initial 10 month wait for speech and language -who said it was too complex for them . So all in it's just over 2 years ! I've felt really alone and stressed out but have vowed never to stop doing things in fear of a struggle just ride it all out the best we can. I just wish he would talk , I feel like we'd have more answers then . Something you've prob had which people don't always consider is trouble with the physical side ? My boy is big and so strong! I've creaked my neck/ pulled my ribs etc just getting out the door for nursery I feel like I've had a fight! And my god can he run ! He's so beautiful and absolutely melts my heart with his big puss in boots eyes looking up at me-the worry and anxiety I have is massive though 😖 but we do t know what the future holds do we !

Lots of good advice on here. We have had phases of literally not being able to go anywhere now it is all very much in ds hands as much as possible.

With regards the garden centre I know it was raining but I would have taken him outside to see that the play area was closed. Ofren visuals are easier to understand than just being told no.

Ds is 9 now in some ways it gets easier, I think a lot of that is because you learn what is needed (until they do a 360 and change on something of course!) and because when older it is generally obvious to others that they are disabled so they are less judgemental of the meltdowns (or maybe you just learn to ignore it)

@coco2891 Oh man yes the strength...my DS is SO strong. And very tall for his height too. I really do worry about what I'm going to do when he gets too big for me to pick up mid-tantrum.

And I too find it hard not knowing what the future holds.

Sorry that previous post was me (op) under a name change.

Huge hugs, OP. I am really sorry to read you're struggling, and I totally empathize. Our ds is 4 and life is exactly the same. Except home life is often as stressful when dd is around as he can't cope with another person in his space. I mean they can play wonderfully, but they fight a lot like all siblings. However as he has Asd, he also gets very stressed with her around him a lot and acts out. It's so stressful trying to manage it all and keep everyone happy and not just curl up in a ball and bloody sob!!!

Ps our ds is also huge and has the strength of an Ox. His meltdowns are not pretty and require a hell of a lot of energy to try and calm him down, or carry him out of somewhere he is finding hard. What I always remind myself and my husband is, no matter how hard it is for us and for his dsis, it's 100x harder for him when he's in that place of extreme stress and anxiety.

@Allforall Thank you for your lovely words and I'm so sorry to hear you're going through this too.
My older (NT) DS worships the ground that DS2 walks on and I really try and make sure DS2 has the space he needs without hurting DS1's feelings. He loves his little brother so much.

You're spot on re the meltdowns...they are hard for us but also must be so hard for DC. I'm working on quick distractions and moving him swiftly, and also taking on a lot of advice from this thread about just letting him do what he needs to do in order to prevent those situations. But we all know how much easier that is said than done

Our diagnosis is very new, just a few months ago. I'm getting better at getting the words out of my mouth to tell other mums we meet that he has autism. So far, they have all been incredibly understanding. I find it helps me to just say it.

Goingslow, I often tell people ds has a diagnosis of asd as it helps spread awareness and also, most importantly, helps him be understood a little better. I hope anyway! For us diagnosis is not so fresh. So walking the walk a little longer here, but by no means got any of it Sussed and, as I've said, we still struggle daily at times. Right now is a very regressive period for our ds, so we have had lots of behaviors amplified and tricky times. Ds is struggling a lot, it's painful to see and it's hard to go anywhere. But these times always pass. Ds makes me laugh more than anyone, and I genuinely mean that. He's the funniest guy and only 4!hes also caring, loving and kind. He is brave and strong. As much as I find this all so bloody hard, I adore the boy and that keeps us going!

Hope sharing has helped, OP. Just having others 'get it 'on here can be so therapeutic!

goingslow I could have written your post- my life is VERY similar and I have s younger toddler too. I also believe in getting him out and about but I have modified what we do. It is utterly exhausting and so soreness it’s me that needs ear defenders and something to scream into not my son! I hope it will get easier. I agree definitely about giving two choices- that really helps as does using familiar phrases as reminders and getting him to respect them so it sinks in and he feels in control such as one more and then... “
finished”- giving a reasonable amount of control to him where it’s safe does help. If you ever want to chat just pm me. ⭐️⭐️⭐️⭐️

Sorry I get him to repeat these phrases not respect them.