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

You have no idea what his understanding is or how being berated by a stranger might cause him to react. I’m sure if the poster had fallen or been hurt, the mother would have apologised.

I agree with this, people are more considerate when they're older and it's obvious.

We're a little further down the journey than you but I do still get embarrassed. My non verbal child throws stuff everywhere in public and my verbal autistic child (still has learning disability) can be really embarrassing (which is awful to admit). He says really unusual things and has unusual OCD rituals.

Do you go to any special needs specific places or sessions? I find them a tiny bit more relaxing.

I said nothing about berating anyone. But not everyone can safely be taken to a shop and his mother needs to realise that. An apology is no compensation for a broken bone and some people are more fragile then they appear.

Making a noise is one thing. Pushing people is different.

His mum was probably mortified that he’d done it.
If my son did it and I apologised and you “said something” you’d be getting “something said” straight back.

Obviously safety is important but what are you doing to remedy the situation of disabled young people in the community ? Are you involved with advocating for more social care for the young disabled ? I am not trying to be little your genuine concerns for your safety but these concerns need to be raised with politicians and civil servants who insisted care in the community was not just a gimmick to save money and ignore the needs of the vulnerable. If you don't feel safe out and about due to their decisions you need to take it to them not the the parents who have no power to change anything,

I think you're going to have to grow thicker skin and sharp elbows.

I am an autistic parent to a high needs autistic child who constantly stims.

1. Autistic people are just as deserving of space as anyone else
2. You are her best and possibly only advocate. Please don't make her world small, fight to make it bigger.

So what if she stims?

Invest in some sensory aids.

We take ear defenders, headphones and a tablet everywhere we go, and my son is 6 and we still use a pushchair as his safe sensory space, and also because he elopes. You can often get sensory pushchairs funded through charities but you do have to request a referral to wheelchair services and have REALLY sharp elbows otherwise they will just offer you a wheelchair which isnt safe or comfortable for children who throw themselves back, need a canopy hood to block out light, and still need space to sleep as well as needing a 5 point harness for restraint. We have a sign that clips to our pushchair that says please treat this pushchair as a wheelchair, and a lot of negative comments have stopped and the ones that haven't, we just point to the sign, or ignore them because we don't owe anyone an explanation.

We also take a thin blanket to clip over the front if he needs total separation from the outside world and we just crack on.

Enjoy your days out with your DD and let her see the world around her. Your world and her world is already small enough as it is. Don't let others put you off.

Would a bigger SEN buggy help? She must be nearly growing out of a standard one and the bigger ones at least make it obvious that she's a child with additional needs. You'll still get arseholes though, but at least then they're obviously arseholes and you can treat them as such

I just used to ask people if they wanted a photo. I have no patience for staring.

This sounds so hard. I have a disabled relative and there is a lot of staring when out and about; my advice would be to completely ignore it. Or you could say ‘hello!’ With a big smile. When I was younger and people stared at my relative I used to wave and say ‘hello!!’ As loud and smiley as I could to point out how ridiculous their gawping is. People feel very embarrassed by that and rightly so!

keep pushing forwards. Hard as it is, your dd needs to you show her how to overcome this ignorant behavior. Don’t show her it’s hard for you- show her to brush it off.

At the same time as you’re putting on a solid front, see a counselor for your own strength and well being. There’s no guilt in this, you’re a wonderful mother and it’s a very hard thing to face xxxx

The one thing I would add here is if you have other children please think about how your reaction will affect them.

I have a disabled sibling. Her behaviour never bothered me as such- it was just normal for me. BUT, my parents anxiety and reaction to her behaviour in public has had a huge affect on me as an adult. They would react with extreme anxiety and distress about her public meltdowns, they feared judgment of strangers and never spoke to me about how I felt about what happened.

Before therapy (fucking fortune) I subconsciously constantly scanned for « danger » when in public and people pleased to prevent others forming a bad opinion of me. I also had horrible anxiety, which affected me a lot.

So please please think about other children if you have them so then don’t have to spend several thousand pounds to function as a 30 something!

Have you tried a trike? My son isn't autistic but he stopped liking the buggy and a trike has been great.

My sisters son is just beginning his diagnosis for autism and she has also hated taking him out as she's very protective of him and feels people are looking at her. I would say in her case she's overly hyper vigilant, as sometimes people glance over at hearing a stimming sound as it draws attention momentarily and will look away, but she sees them all and feels dreadful. I'm sure some people openly stare but I'd wager less people than you think are judging you or her.

My sister has found alot of help by doing to asn specific classes and activities her her son, as all the parents there have the same or similar experiences and don't bat an eye.

Does she actually WANT to go out and about? Many autistic people are quite happy staying in. It’s only NTs that seem to have this obsession that everyone must always be out and about. It drives me bonkers! Just leave us be…we’ll go out when and where we want to.

Hey OP, please don't feel embarrassed, and I hope you power through the days out, I can't imagine how hard it probably is x

If I hear someone being loud it is instinct for me to look but as soon as I realise it's due to a disability or even a child who is just loud then that's it - no judgement at all and I get on with whatever I was doing at the moment.

However, if I hear anyone make a rude comment about someone with a disability then I have no problem expressing my disappointment in them.

My partner also wouldn't allow any hate or ignorance around the matter go down without a stern word.

I agree with the PP most people are looking on at you with admiration - a few times I have asked a parent if there is anything I can do to help (at GP, another time at store qué) however I mostly don't because I would hate to make the guardian/ parent feel uncomfortable or if I may come across as rude

My sons autistic aswell (he has adhd, severe learning delay and Tourette’s too) and I ate taking him out too because I have other kids and it’s a handful as he needs one on one to keep him safe, I honestly choose not to care if people stare, he wears ear defenders and reins and it’s quite obvious why he acts the way he does. Don’t let it stop you going anywhere if you both want to go.

There's a buggy that people with more seriously autistic children use, which kind of tells me that fact and makes me understand why their child is in it and not walking; you could consider swapping for one of those. They are more angular and A-frame-like.

I agree that getting her earphones could both prevent her getting upset and be another way of indicating a 'hidden' disability.

I agree that it's probably a situation like when children are being loud in church - 100x more obvious you than to people dealing with it. Try to just shake it off. People should be able to control their actions, but it is commonplace for many humans to stare at things that are different to what they see all the time. I agree that some people will be trying to empathise.

So if I had said "your son nearly knocked me over and I could have broken something" I'd be getting "something said" straight back?

Or perhaps it wouldn't look like dangerous to you because poor balance and osteroporosis are both invisible disabilities.

Funny old world.

Love this one. Used to ask folk that at the beach when they stared at DM who had plaque psoriasis. Soon shut them up.

Sure is.

If she doesn't like busy places or playgroups, can you avoid these? You shouldn't have to make her and your world smaller, but ssy avoiding the supermarket and doing an online shop, going to the park early in the moring, or in the evening before bed time, would make her and your life easier.

She can have lots of enrichment at home and school, without having to be in busy places.

And as others have said, if anyone makes a comment, tell them clearly that she's disabled, the embarassment should be theirs, not yours.

You'll build up a resistance to other people looking and judging. Reframe it in your mind, if you heard shouting or crying while out then you'd probably look to see what the noise is, it's a natural reaction. People could stare less and not make comments, of course, but you can't handle their actions only your own.

My child is 11 now, and going out is still difficult at times but it has got better. Let go of expectations and celebrate the little wins. I know its hard, being in public and parenting through Meltdowns etc.

Are you getting support from anyone who could advise you of local sen outreach? there are specialised playgroups/charities etc you could get on the wait lists now and put things in place for when she's a little bigger and in the meantime just focus on finding the places where you can cope more and that she copes with best even if it's the local shop or park everyday. Bring a bag of safe toys/snacks/ear defenders. If her buggy keeps her safe just focus on that. You don't need to explain yourself to random people, their opinions don't matter.

There is a lot of acceptance to get to grips with, when you have a special needs child. It's hard to let go of our expectations and build in different ways of being, but you can do it and you will have good experiences outside of your home, it just a longer process to figure out what will work best for your child.

Support groups online or in person can be helpful as a parent. My dc has a physical disability and is a teen now but I support parents with younger children online and in person. It does get easier with time.

Perhaps do not look at it as "she is missing out" as in reality the only thing she is often getting from busy/unfamiliar environments is being overstimulated and unhappy.

I also just want to mention that our cineworld does an autism friendly screening on the first Sunday of every month.

My son absolutely can not sit still, never mind watch a full movie.

We took him to see moana 2, and like clockwork he wanted movement breaks, but we weren't alone at all. Almost everyone's kids wanted movement breaks. Walking up and down the steps or leaving the room, some splash breaks in the bathroom sink, stimming.

I think that was one of the first times I let my shoulders drop because everyone in that room got it.

Now we book as many of those screenings as we can because without opportunity there can't be development, and that applies to more than just the cinema, but the cinema was a designated safe space.

Now, my son is actually excited to go, excited to give the cashiers some money in exchange for snacks and drinks, is excited to print his ticket off at the machines and show it to the ticket collector, and is learning life skills alongside getting out of the house and learning that there are more people who like him deserve to take up space.

I really recommend it if you also live near a cineworld, but don't expect to go and watch a film, just go and expect your child to do what they want and need to do, around others doing the same.

You might only see 20 minutes of film, but the more you do it the more opportunities she will have.

I am not trying to be little your genuine concerns for your safety

Or anyone else's, that was just one example. Back when I volunteered for an ASC charity we were trained to prioritise physical safety in social situations.

I'm trying to make a difference between the social behaviour that you do need to care about as a parent and the behaviour you don't. It's not about whether you feel mortified or not. If your child is pushing people out of the way from behind then you absolutely do need to intervene or avoid or prevent. If your child is stimming or throwing a tantrum in the park or riding in a buggy then you don't need to worry about other people or what they think.