I feel terrible for even saying this but…

[schoolie258]

I’m embarrassed to go out with my disabled child. She is autistic. Diagnosed. She’s only 4 but she stims constantly, she’s non verbal but very vocal.
I don’t want to feel this way but I just feel like I hate taking her out anywhere because she’s a handful and people stare and look at her.
how do you get over this? Or deal with the extra attention when going somewhere with a special needs child?
I feel like she’s missing out on a lot of things already because she doesn’t like busy places or playgroup type environments. It’s too busy and loud for her so ends up in disaster and we leave as she’s crying and becoming distressed.
of course it’s not her fault and I love her dearly but I do struggle with public outings. She is still in a buggy because she refuses to walk so people stare and I’ve heard comments of people passing saying “bit big for a buggy isn’t she?”

Why can’t people just mind their business

My son and lots of his mates would hate going to the beach but really like going to the mall. I can pretty much guarantee that he will meet up with at least one friend every time he goes.

This is really not the case. These accommodations can make the difference between accessing the world and not.

@schoolie258 you need to find your inner strength and let yourself and dd find your place. You don’t need to apologies for her. She is who she is and a valued member of society so treat her as though she is. Expect that she needs a bit more and might take more space and time. It’s ok. There is no shame in stimming or noises or buggies. Head high and enjoy your unique little person. This is her childhood and your turn at parenting a preschooler. Take photos, and know that some of us looking are remembering those days.

Solidarity.

I have a 4 year old ASD with extremely challenging behaviour. We use a pushchair for safety. I don't drive and don't have the time to learn. I try my hardest to do things when he's in nursery but this isn't always possible.

Every outing I swear I'll never do it again. He's very aggressive and screams/shouts so very loudly.
One day as I was sat on the bus with him biting and kicking me, an older woman screamed at me to shut him up. This of course made things worse. I was sat there silently crying. Being screamed at from both directions.
The reason he'd kicked off was because he wanted to sit on a chair. He's simply not safe out of a harness. He doesn't understand risks. Some days he'll sit perfectly on the bus, others he won't. I came home that day and wanted to take myself off to a high bridge.

Unfortunately until the general public are more educated on our children this will continue to happen.

Just know you're not alone 🤍

Bloody hell. Why should an autistic child have to wear a sunflower lanyard to signal to the ignorant and judgemental that he/she has such a condition and why should the parents need people to be forgiving of such a child's behaviour.

How about people keep their judgemental, unhelpful opinions to themselves, stop and think for a change and stop being so nasty.

Tbh, until I read this thread I had no idea what a sunflower lanyard indicates, and I suspect a great many other people, especially the type to make remarks to a parent struggling with a child having a meltdown or similar, also have no idea.

These treat as a wheelchair tags can be helpful as can the sunflower lanyards. But also why should you have to. It isn't any of their business and it is a reflection on how sad their own lives are that they feel the need to judge. Confident happy people don't tend to need to.

find some local disability groups to join, lots of areas have ones with social activity ones where you can hide in a small group who have your back and get it. You can also get discounts by either taking a photo of the dla letter or a max card. And if you aren't claiming dla please do as you are entitled as it is about care needs not diagnosis. You can also see about short breaks funding at your local authority so you get a break from it all too.

It is hard but hold on in there! You've got this! And it does get better, you just need to find your safe community x

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.

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

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.

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.

@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.

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.

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.

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)

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

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?

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

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 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.

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 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.

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?

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.

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

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

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.