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.

You are far from alone, many parents have been in your position.

Try and focus your attention on him, not on what you think other people are doing. It doesn't matter what anyone else says or does or if they stare or if they tut. He's your child and you parent him to suit his needs.
You're doing fine

You may want to try some PDA strategies, if he's resistant to something, make it a choice of two things you want him to do.

Could you buy a small push-button toy to keep in your bag or his backpack if it might help when he can't push a button on a lift - I know it's not the same, but any substitute that may work is worth a shot.

It won't always be like this, none of us know how to handle any situation until we're dropped into it, then all we can do is try our best.

I could have written your post when ds was younger. He is now nearly 7 and things have got easier in some ways, mostly because he’s more obviously “special needs” so people tend not to be so judgy.

The only advice I can give you - which i wish someone had told me - is to stop trying to do “normal” stuff. I tried so hard to make sure ds had access to all the regular things like soft play and the park etc and as he’s got older I realise that actually those things are really, really stressful for him (noise, people etc). He’s much happier just going for a short walk round the local area or to a very quiet public park where he can run (not the play areas).

Also things like lifts - if he wants to touch the buttons I would find a quiet lift and let him go for it. Sounds absolutely crazy but we once spent half an hour in Sainsbury’s literally going up and down in the empty lift pressing buttons - for ds that was the highlight of his week.

You just do whatever you have to do.

I think that you might have to start choosing your battles with going out and about. Youngest sounds very similar. He is also a screamer, and will kick people from his pushchair in crowds.

We try to reduce the sensory overload of trips. Quieter times, night time supermarket trips and as for soft play. Well, we wouldn't ever take him to a normal one since we found a sensory soft play centre. He actually calmed down there, and came home not in a state. Still best to go very early and avoid too many children but the soft lighting, extra safety padding on walls and floors and a lack of crappy music meant that he could actually enjoy himself without being overwhelmed.

Oh, and if you can't avoid trips, and if he will tolerate them, a pair of ear defenders (DS wears sunglasses too) is like hoisting an autism flag so helps you as well as him!

Yep that sounds exactly like my ds at 3. It is really hard. I second fairylea on not trying to make him do normal stuff.

We now have loads of accessories to help ds when out, a sensory bag with chewlery, headphones, milk cup, favourite toys, bribes (usually small chocolates), iPad and visuals. I feel like I'm going hiking when I'm leaving the house!

We also often have to use his SEN buggy as he is so big and strong now (he's 5) I can't handle a meltdown without it. Also he enjoys being enclosed, particularly if he's finding the situation stressful.

I wouldn't say that going out has got that much easier for us but we are more prepared and have more tricks up our sleeves than we used to. I really have to research every place we're going to and work out where potential problems might be. I can also now gauge better when ds is stressed and that gives me a better idea of whether it is worth trying a new thing that day or not.

Thank you all SO much for taking the time to reply, and for making me feel so much better.

I also travel with an arsenal of 'stuff' when we go out. Dummy, comforter, push button toy (to the pp above who mentioned this (sorry on app so can't name check), it's such a great idea and so essential for us), buggy, cars (they're his obsession) etc etc. My friends always say I'm so organised but little do they know, I can't just run out of the door without having every single thing that I can possibly carry to make my life slightly easier.

I totally get the idea of not being able to do 'normal' things. I am still getting my head around this, but recently I have realised I just can't parent him as I would do an NT child (like my eldest DS). We do go to places early or when they're quiet. There are places I just can't / don't take him.

The ear defenders are an interesting idea. I've never thought that he may need them before, so thank you for that.

Agree it sounds very like my DS at 3 too.
It is a lot easier now he's 10.

What helped us at that age was photographs of all the places we would go to and going through them before hand (eg 'we are going to the park' - photo of park. Sometimes the gate is open, and sometimes it is shut' - photo of gate (the shut gate used to send him into meltdown)
'If it's shut we'll go in this entrance' - show photo of other entrance.

It did help a lot.

Sounds just like our DS when three, too. We just didn’t venture out, basically. We used to drive past couples out walking, not even holding their LO’s hand, but happily trotting along next to their parents, not running ahead, not running on to the road, not lying on the ground refusing to move and we’d say to each other ‘how do they do that?!’

It does get better, honest xx

Ask around you local area to see if your softplay zones and/or trampoline parks hold special ASD/disability times. We are fortunate to live in a city, and so these arrangements are more common. I still have to helicopter our son in softplay even at the specialist session (else he goes the wrong way!) but he really enjoys the freedom of the trampoline park where other, similarly understanding, parents are not remotely judgemental of his wayward behaviour

But our son is 9 and we still take an arsenal of equipment out with us, and confine him to a buggy at times for safety. Enclosed play parks are the best, I tend to go when it's emptier and just let him run around like mad!

3out YES! I see parents with DC trotting along merrily, or wandering happily around shops, helping to put items in the trolley. Or waiting nicely at the checkout. I couldn’t even think of doing that, he’d have everything off the shelves and on the floor in seconds.

Marshmallow09er The photos are a good idea, thank you. I will try that. Another one of my DS’ challenges is because he is still so relatively young and his speech is so delayed, he has little to no understanding of any requests made or information given. He’s a bit like a brick wall, love him.

Eggysmom It’s funny you should mention the SEN sessions; a soft play near us is just about to start doing just that and I cannot WAIT.

Thanks again so so much to everyone who has taken the time to respond to this. I’m so grateful. It feels so much less isolating, and reassuring to know that it may well get better over time.

There’s always new challenges, but life isn’t lived on quite such a knife’s edge as it used to be, honest

This sounds just like my dd who is also 3, she is currently going through asd assessment. I know exactly how you feel and it does torment you because you want to do all these fun things but when you try them they just don't work out how you think they should.
I always used to feel guilty for not doing what others were doing with their dc but in reality I know that my dd would just end up having a meltdown and screaming.

I also have a 5 year old dd who has sensory issues but manages quite well socially. So I sometimes have no choice but to attend things that I find unsuitable for dd with asd. Although people say you shouldn't care what people think you just can't help it she your dd is refusing to be restrained by a busy road and begins hitting you with full intent! Sometimes I tell my DH that I think people would think she wasn't mine by the way she attacks me in public. It can be embarrassing but I know she'll eventually grow out of that.

I agree it does get easier and I know that things do improve in time. I also have a 15 year old with asd who is amazing and manages very well when not challenged in any way.
I think that you gradually learn how to best accommodate their issues x

It does get better OP. When my dd was 3 I thought we would never be able to leave the house she has asd with demand avoidance, adhd and spd. She is 6 now and things have improved massively in the last 6 months.

You've had some great advice here.

My two penn'orth...

You need to adjust what you think is a good thing to do with him - what you think he should be enjoying isn't what he enjoys doing. Find what he enjoys, and let him do that, not what you expect an NT child of that age to want to do. If that's

If you find yourself grieving for the 'normal' child you expected, take some time to grieve... just do it away from him, and don't let those feelings try to make him into something he isn't. 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?

DS is 4 & I completely resonate with this. It’s hard. Really really hard.

Thanks again to all those who have been so understanding and empathic. It is good to hear that it does get easier.

@Sethos '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?' Well, since you ask, it was pissing with rain, freezing cold, the play area was roped off for maintenance and we had very limited time to get back and do the school run for DS1. He absolutely LOVES trains. How did you deduce that he isn't interested in them? He'd spent fifteen minutes playing with and enjoying the display set they have at the garden centre and he got a train set for his birthday that we were adding a new engine to with his Christmas money. Not that I need to justify that to you, but your tone is so judgemental so I'm going to. I'm well aware that I can't shoehorn him into NT activities, and believe me, I spend my life adjusting so that he does what makes him happy. He loves soft play, loves the park, loves lots of 'normal' stuff. I am just learning how to manage things that I sometimes find challenging but that he enjoys.

Just to add to that, sorry to those who also are struggling with this. @GreyBird84 It's shite, isn't it?

I think tone is really hard to pick up in these messages and sometimes parents are writing in the few seconds before a glass gets ripped over or siblings are about to attack so it's not always as considered as elsewhere, so I'm sure Sethos is just trying to tell you something she has learned (as have lots of us) along the way. God, we got thrown out of so many toddler classes.

I don't have these but a SLT made up some similar on Word for parents to print and hand out. I haven't done but I really like the idea for when I'm resisting the idea of launching at people smirking at me and my terrible parenting....
asdbrightideas.co.uk/asd/index.php?main_page=product_info&products_id=111

@Viewofsaturday That link isn't working for me - could you repost? Sounds interesting. Thank you.

asdbrightideas.co.uk/asd/index.php?main_page=product_info&products_id=111

I could access the first link, hope this one works for you.

Basically the card says things like (paraphrasing) My child has autism, I'm in control, If I need your help I'll ask, autism can make kids behave unpredictably, kid is doing their best in an overwhelming situation thank-you for your understanding.

Slightly different ones here that you can print yourself
pathfindersforautism.org/articles/home/my-child-has-autism-wallet-cards/

@goingslow I meant that had he clearly had no interest in buying the train at that moment - because he was screaming to go outside. I didn't mean that he's not generally interested in trains.

Anyway, my intention was to help, not offend, and I've clearly not managed that, so I'll leave that to more tactful people than me.

@Viewofsaturday thank you.

Just want to add that @Sethos I found your post quite helpful as social media made me feel as if I wasn't providing the same experiences as other friends children.
I have since lowered the bar and try not to feel guilty about spending more time 'zoning out' in our own space.

Though I understand the original poster for feeling that this was criticism as to their intentions on the day. I think being there at the time and seeing what caused the reaction gives further insight.
I regularly get offended when a health professional gives what they think is good advice but I feel a tad insulted because I feel they lessen or fail to understand how much these 'episodes' affect us.

@sethos He didn't scream at the trains. He loved playing with them. He kicked off when we walked towards the tills, past the door to the outdoor area. I would never force him to play with or do something that he wasn't interested in, and this was an unfair assumption. I appreciate your intention wasn't to offend.

And yes I agree with pp that the 'lower the bar' element of your post was helpful and useful.

I know how difficult that can be. I avoid play parks, balloons, small waiting areas, shops and the shoes isle in the supermarket as dd can not understand the word 'no' or 'next time'. Shopping almost guarantees a meltdown.
Also her jealousness towards other children's belongings send her into complete meltdown.
For me it's just learning where we can avoid the these taking place and they are much worse when around other dc.