I feel terrible for even saying this but…

" so people stare and I’ve heard comments of people passing saying “bit big for a buggy isn’t she?”

I think in this day and age you have to be a bit of a twat not to be able to work out why some bigger children may need to use a buggy. This behaviour says everything about those people and their lack of awareness. Their ignorance is only your problem if you take it on your own shoulders.

I think most people can relate to some extent with what you've written because we all have moments as a parent where we want the ground to swallow us thanks to our kids, whether it's the full tantrum in the aisle in tesco or intensly questioning other people in the public toilet about whether or not they did a poo etc but I can see why this feels very consistent for you and it must feel quite isolating at times.

When ds is kicking off and I feel eyes on me I try to remind myself that I don't know what they're actually thinking - they may be thinking about what a great job you're doing, trying to catch your eye to offer a nod of solidarity/ to see if they can support in some way without overstepping or just having a natural response to a noise they've heard. I know I've done all those things without ever thinking negatively of the mum or the child I'm looking at. I think as parents we put more pressure on ourselves pre-empting what other people might think of us than what we actually need to.

I think all you can do is plan your days according to your child's needs as best you can and accept that that's going to look a bit different from other families and that is okay.

I read a thing recently that really resonated with me that you can't parent well from a place of embarrassment (because then you're parenting for other people instead of for your child) and that's my new goal - to not give a shit what others think and to say that to myself when I feel under pressure/embarrassed because it helps me ground myself into whatever the situation is. Your only priority is your child. Everything else is background noise and you owe other people nothing.

You sound like a fantastic mum. Lean in to the fact that your DD has as much right to exist in any space exactly as herself as any other child or adult does. That means making noise, or self-soothing behaviours or mobility aids using space or whatever else.

I agree with this.

Look for SEN sessions at softplay, swimming pool, family centre, sea life centre etc. to ease you in. It’s easier when you know that others around you understand.

Make adjustments and accommodations as appropriate. Ear defenders, pushchair, fiddle toys, tablet, transitional objects, weighted clothing/blanket/pads, reins… whatever keeps her happy and safe. It might be worth seeing if you can get an OT referral or to speak to a private OT as they will be able to make suggestions about meeting sensory needs.

I’m so sorry OP. I’m not in your exact position but I did grow up with a severely disabled sibling so I understand a bit of what it’s like.

I don’t think you should feel embarrassed, the people making comments and/or staring should feel embarrassed. It’s appalling and I remember similar comments when my sister was young 30+, how sad that this is still happening.

For what it’s worth I think the vast majority of people wouldn’t notice or if they did, they wouldn’t think twice. It’s just a tiny minority - don’t let them ruin things for you. I agree with a PP that it’s not your job to educate them, but if you possibly can try to have a thicker skin and ignore them I think that’s the best approach. I really feel for you because I know it’s hard.

No advice but don't feel terrible. Be kinder to yourself. You have been dealt an absolutely shitty hand in the card game of parenting. Nobody who is judging you would willingly swap places with you.

For what it's worth I also wouldn't think twice if I saw someone out with a child loudly stimming, or even a child who didn't 'appear' to be ND I would just think gosh that looks tricky.. can I help... probably not... smile in solidarity with carer maybe... move along

I disagree that you should be educating people, it’s not your job. A thicker skin is what you need. You’ve got to power through it and ignore them. People will never stop staring, you have to ignore them.

You would like to think wouldn't you ?
But no sadly some people can't.

Trying to structure this to be as helpful as I can:

• first of all I’d highly recommend joining a local charity/support group. In my area we have a few & they have been amazing not only for getting advice & support but for meeting people similar, joining their events, making friends with people in similar situations so being able to do things with them etc

• with her not liking crowds, noises etc, have you tried any specific autism friendly events? We did these in order to build up to getting used to being around other people, the local charity/group will be to give you some list. Our LA does lots of SEN sessions for things like swimming, dance, cycling etc. Plus they run sessions at play centres, even things like my local Legoland Discovery Centre has (not sure if it’s still running) autism friendly sessions. Doing too much too soon, or forcing them into busy situations doesn’t help, in my experience it makes things worse. It was far better to build up gradually than make him terrified to leave the house because he knew he couldn’t cope with the sensory overload.

• have you thought about any adaptations such as ear defenders, PECS cards for communication (your LA speech & language are a great resource for this), a tag for the buggy (you can get them on eBay). If she’s getting big for the buggy then you can get things like the Maclaren Major which is a SEN pushchair/wheelchair which you can clearly tell isn’t a little child’s buggy so that helped with the comments (you can get them cheaper 2nd hand on local SEN FB groups as they are quite expensive but will last years, we used ours for safety & as a calming measure for our boy, he far far happier in the Major than walking amongst crowds)

My son is still in a SEN school (high school now) & doing so much better than we ever thought possible in those early days, it can be a long process & it’s a massive learning curve but you’ll get there

They started using sunflower lanyards in airports to indicate to staff that a child/ adult has additional need, s and to make reasonable adjustments for them unfortunately during the pandemic every man and his dog had one to indicate they couldn't wear masks so they kind of became meaningless.

Yes, I can see that in a situation like that a sunflower lanyard would be helpful because that must have felt like an assault until you realised the circumstances, with obviously, the help of the lanyard. So yes, I can see its value. Although, as I said in my pp I wouldn't have known what it means prior to reading this thread.

OP's child is still very young and is still in a buggy so very unlikely to push someone like that.

I think it was the idea that the parent of a young child needs the 'forgiveness' of the public at large and needs to signal to everyone that she needs their forgiveness that rankles with me.

Tbh, any parent of any child who is behaving in a challenging manner, and most children will at some point, shouldn't have to listen to the comments of judgemental strangers. Can't they just keep their mouths shut and their opinions to themselves?

I think along with the good advice already posted just know that everyone who ‘stares’ isn’t necessarily judging or ‘being horrible’.

I happened to glance round at a National Trust cafe this week as I just heard what I thought was someone shouting in distress. It was just instinctive. Once I realised that it was a stim I turned round and thought nothing more of it. I hope the parents didn’t think I was ‘being nasty’ - as nothing could be further from the truth.

That sounds really tough and how you feel is valid and understandable.

PP have mentioned this too, but I also recommend visual timetables. Show her where you are going, perhaps you could even give her the choice out of two places once she's familiar with the pictures and can link them to the places.

Give her a way of showing you that she has had enough and she is feeling overstimulated, for example a red card or a toy that she gives you when it's all a bit too much. Or perhaps - on the back of the lanyard mentioned above you could put a stop symbol or something and she can just show it to you. She will feel safer and more in control then and you might find that she will build up a bit more stamina and tolerance for outings.

She needs to feel in control and there are ways of doing that which don't give her full control if you know what I mean.

Create her a special bag equipped with sensory toys and anything else that will help her with any challenges in the day, sunglasses, ear defenders, colouring etc. Make it your mission to work together to find some places where you both feel comfortable - national trust gardens can be good and quite open if you have any near.

If she has sensory seeking behaviour, messy play is your friend, if you give her a chance to do this in the mornings before you go out it will satisfy some of that need - kinetic sand, playdoh, jelly treasure hunt that sort of thing. I recommend 'Crafty Pods'.

As for the buggy, do whatever works best for your child - but you can also get those beach wagons that your little one can sit in and can have her sensory toys and special items around her.

It's also important that you are well looked after and taken care of too, as this sounds really tough. I completely understand feeling concerned about judgement but it is worth trying to shift your mindset on this. You can't change the judgement of ignorant people but you can change how you feel about it, as hard as it is. No one should be made to feel like they need to hide disabilities away to appease people who refuse to educate themselves.

I am a teacher with heavily masked ADHD and Autism if it helps for context.

I have great admiration for parents of children with any type of disability. The amount you cope with would floor so many of us.
I have a severely autistic brother, and compared to 40 years ago, more people are educated on what autism is, and how it presents, and so are less judgemental. But I can still be embarrassed when he behaves differently to NT people - some people avoid us, others stare, others give us a supportive smile. I remind myself that people who are worth anything will smile and be supportive. And I am proud of my brother for every small thing he achieves (most of which are imperceptible to others). But for that to happen, he does need to get out and about “in the community”, and get used to things which initially he can’t cope with.
It’s important that children see (and engage with) people who are different to them - and it becomes normalised for the next generation - so when your DD is older, acceptance is more prevalent.
Stick with it, as pp said, you do have to “wing it” and have a thick skin - and be proud of everything that you and DD manage.

I stopped going to soft play. Cafes are ok for us as mine loves food. But can't do kids parties or large events. No kids clubs for the summer, no after school activities, no sports. He can't do them as toi many people and too noisy. So we don't go.
Long walks in the woods, peaceful country house gardens with lots of open space are our go to. All the stuff my eldest loved, my youngest now hates.
Online shopping, amazon delivery. The one shop he loves is Lush as it is so sensory and they let him try the soaps. Supermarkets are a no go. Excpet Lidl where he gets his own little shopping cart. I say fill it up with whatever you want, but has to have some healthy food in there too. Thats actually a fun outing. SEN sessions at the trampoline park are good too. Horse therapy was good.
Its different but not impossible and you can make peace with how things are, as apposed to frying to force a square peg into a round hole, adjust your way of life to make it easy as possible.
The disability card was a game changer for days out. Theme park access cards are the inky way we can do a day out and they are a godsend.

I’m so sorry, OP. That sounds very hard and I’m sure I’d feel similar.
If it’s any comfort, my first thought is always for the poor parents, whenever I see kids kicking off! I’d never judge or say anything and have raised my girls to look at the bigger picture too.
Being your daughter’s advocate will require a thick skin, and I don’t envy you that x

Um. No they don't

@schoolie258 we do have a couple of inclusive playgrounds near us, (driving) so for any sort of disability
Do you have anything like that?

Ps there’s a group of exceptionally loud adults that come into the supermarket once a week, they stim, shout, laugh and point and we (the workers) love when they come in, they really brighten up our day

Hugs op, my brother is in his 30s and stims and talks to himself. Everyone looks at us, some quickly look away. You just have to get used to it really and remember people are just trying not to look like they’re staring or judging. The scene in the greatest showman where the mum pretended she lived alone because she was afraid it was someone at the door who’d judge her son hit me like a ton of bricks, nobody deserves to be hidden (not judging her just the people who made her feel she had to)

I’m sorry I don’t have any advice, I just wanted to say how brave you are, and I recognise how tough life must be for you.

Unfortunately people are always going to be judgemental you just have to get on with it, it is very unfair that your daughter is missing out on lots of things because you are scared of what people think and the longer you leave it the harder it will be for you to then get your daughter to go out and do things.

@schoolie258
The post from @Rexthesnail is really spot on.
I think one of the biggest adjustments parents need to make us seeing life through the lens of the child and not our own perceptions.

If she can't cope somewhere then she isn't missing out. Become attuned to what she can cope with and work with that.

i have a daughter with learning disabilities without autism. We were late to getting any help. Didn’t get an EHCP until she was a teen not coping with mainstream school. Late to applying for PIP.

If I could go back in time I would apply for all the help on offer.

From age 5 your child can have a CEA card . Entitles the holder to have a carer go free. Look out for relaxed screenings at the cinema. Sound less loud , lights less dim , less expectation for audience to sit quietly

Do apply for a NIMBUS card with a +1 opens up
a lot of opportunity for days out.

Some people are just arseholes OP.

Your DD has as much right to enjoy the world as they do so you are going to have to pull your pants up and get out there.

I had one elderly lady telling me that a child I was looking after (as part of a special needs school trip) needed a good slapping for being noisy in his excitement.

I thanked her for her advice but said it was about 100 years out of date and advised her to maybe look up the meaning of the words tolerance and respect.

Actually I think it can help a lot. A while ago I was in the very narrow aisle of a local supermarket and I felt a pair of hands on my back push me out of the way...I was about to turn round and say excuse me what do you think you're doing...but when I turned round it took me a second but I realised the young man who did it had quite severe special needs and was accompanied by his mother who looked pretty exasperated....of course I said nothing. And I was pleased I realised before I said anything what the situation was...so sometimes it's useful to be able to know quickly that you might need to show some patience

No judgement at all from me OP. That sounds difficult and I am sure you are doing a better job than you give yourself credit for.