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

It does sound difficult for you. I know one child who sounds very similar and she wears a sunflower lanyard to let other people know that she has autism. When people know then they tend to be a lot more forgiving than when then think it's a NT child being a royal pain, so could you do something like this? Most people are very good at understanding when they are aware.

I would only ever go on very short journeys build it up slowly and get rid of the buggy
do you not have a park at the end of the road? I think most places have got a park within walking distance. I would go at really quiet times. I’ve been to the park at 5 am before now as the sun rises. If that’s what you gotta do that’s what you gotta do.

Have you looked for any autism groups in your area that will have activity sessions etc for your daughter where you will also get support from other parents who will totally understand and not judge? In terms of having to go out in public spaces use the buggy and get some ear defenders for your daughter or let her use a tablet with headphones to block out the noise she finds distressing and just ignore any comments.

I bet it’s exhausting for you. Besides the fact that your daughter is stimming and people don’t understand, you are trying to take care of what other people think too. DON’T!! Educate them instead. Take your daughter out to where she is comfortable for now; otherwise her’s and your world will get smaller and smaller. Contact a local autism group for support and meet ups with more understanding people. You are a LEGEND and don’t forget it!!!

If I ever see anyone out with an autistic child making noise, I just think ‘they have an autistic child’ and not really much else enters my head.
People who stare are perhaps ignorant to autism or might be autistic themselves, perhaps just curious where the noise is coming from. Children stare because they don’t understand or curious. I would let go of the embarrassment, it serves no purpose and will only hold you all back. You have nothing to be embarrassed about - you have as much right to enjoy yourselves as anyone else does. It would be different if your child could stop themselves from stimming but chooses not to but this isn’t the case. It cannot be helped so you have to carry on regardless and let people think whatever they like.
I might look over if I hear a loud noise or screaming but as soon as I’ve worked out what is happening, nothing more enters my head. Just tell yourself that everyone is like that - because you cannot control what people think about you - but you can control what you think they’re thinking about you!

It will become increasingly apparent as she gets older my son is 15 now and severely autistic non verbal etc, it's pretty obvious now to anyone he's disabled and we don't get many ignorant comments, you will grow a thick skin .
Are there groups in your local are for children with disabilities?

Just a person here and I think its very clear when a child is stimming and its a medical condition and just the way she is. A lanyard could help send that message.

However, I just wanted to say, I’m sorry people stare and choose to have an opinion when its not their business. Its sad that in this day and age we haven’t moved on from that as a society. I am sure there are just as many who empathise with you as not and you should hold your head high and be proud. Don’t reduce your or your child’s life because of other people.

A pp suggested a group to join, maybe thats an option.

Your daughter has the same rights as any other human being to enjoy public spaces, if she needs a buggy, use the buggy, if she needs her tablet and ear defenders on public transport use them.
She will stim and that's ok aswell, your job isn't to hide her away, it's to give her as normal a life as possible whilst accommodating adjustments for her.
You will eventually learn to ignore people staring and remain focused on your daughter.

I'm not unsympathetic but in the kindest possible way you need to get over this.

Putting your dds sen to the side for a moment, I can tell you that it's so liberating when you no longer give a fuck about what random people think.

Your dd is your priority....put her needs first.

When you’re out and about, and you see a child who clearly has something similarly, do you stare and feel uncomfortable or judge them?
It seems like you just find non-typical behaviour embarrassing? You’re going to have to get over that.

I always wear sunglasses and avoid eye contact. It took years to get more confident going out and I regret that as the more we went out the easier it got. I have a neurotypical child too and at that age they were a nightmare throwing tantrums. A lot 4 year olds are hard work so you really shouldn’t feel any different.

If anyone shouts or makes noises people automatically look but that doesn’t mean it’s judgement it’s just attention is caught. That’s what I tell myself anyway 😆

On days where I can’t face it, as previously said above, go at early quiet times. Be kind to yourself it’s not easy

You can’t control other people people being ignorant but you and your kid have every right to enjoy life and the world so screw them and have fun together

What does she like to do and to go to. I only say this as some autistic people from supported living near me would be taken shopping - trudging along the pavements and I would think to myself that if it was me I'd want to be on a beach or out in the countryside but they are mostly taken to places that other people go like the shops, out for a coffee.

I agree about people shouldn't stare and comment. However, where I work (in a supermarket) we will often get children (and sometimes adults) who are very obviously autistic, but people still make comments! I mean, it's OBVIOUS that there is autism at work, but there are still people muttering about 'shut that child up' etc. So there are still ignorant people who make snap judgements about other people's parenting without the least tiny bit of background knowledge. That's why I suggested, as you did, wearing a lanyard. It might make people think twice about their unhelpful remarks.

One day it will just click and you won't care what other people think. You need to help yourself get to that place though and it's hard when you're not there it really is. But please just push through it and go places. Is she still in a buggy? Use reins? If in a buggy just walks but not out of the buggy yet just small steps at a time. Outdoors always whilst you're in this place of mind. Take her safe foods even if itw only half an hour just take a snack. Let her have a device if it helps.... I know defeats the object but it's probably all alot for her but with her device she can be aware that she's out and about but not too over stimulated as she has a device to look at if there's too much and honestly eventually she will herself leave the device and slowly pay more attention to outside and places. Please never keep her in because of how you feel other people are judging it's so so so hard but just power through it

I’ve found companionship and support in our local SEND groups, which are a lifeline in the holidays.
Im not embarrassed by my daughter though, and I don’t think even on a bad day I would be.

Whilst i agree the early days are very hard and you can feel very alone at the start.
My advice is meet parents in similar situations with children with similar needs both on line and in real life .

Some people do ,yes it's rude and ignorant but it happens.

My son was diagnosed with adhd just after he started school. I’d struggled with his behaviour for years but no one was interested. After he started school, they immediately started raising concerns and I realised that, unconsciously I’d stopped all our normal activities because his behaviour had just got too much for me. Although I wasn’t consciously embarrassed, I can say that dh was. You get over it, you develop a thick skin and a fuck it attitude. Those people are strangers whose opinion doesn’t matter.

Give yourself some grace, life is hard enough.

Some lovely supportive comments here OP. I agree with the general consensus to ‘gird your loins’ and go out. To stay inside because of how others might judge/how you perceive their reactions is to imprison both you and your daughter. In the longer term this will be so depressing for you and your daughter will be less able to cope outside.
I hope you find the courage to think f**k it! We deserve to be out and about as much as anyone else.
Love the sunglasses idea, I like to do that when I go for a (lumbering) run. I feel more anonymous which is what I want at that point.
Go out when it’s less busy and maybe have a coffee. If you drive go to somewhere nice, woods, the beach. Fill your lungs with fresh air and listen to the birds sing.

I found the following helpful with my son:

A badge he wore saying something like 'I have autism, please be patient with me' or a sunflower lanyard when they came out;

A number of Pecs symbols on a keychain (stop, no, car, drink etc.);

Using makaton to him (wait, stop etc.).

All the above are visual symbols that tell passers by something other than a child 'misbehaving' is going on.

As he got older (he is now an adult) it became more obvious he was different without even needing any visual symbols. I grew a thick skin and didn't care by then anyway.

It's not 'missing out' if she hates the environment. I guess I 'miss out' on rock concerts but you couldn't get me to go to one.I'd hate the entire experience. I would be very happy with a walk in the woods!

Don't make it harder for yourself. Go to chilled out sen friendly places.

Hopefully there will be some groups in your area you can connect with. Re.the staring and comments, I have a very good ‘resting’ face which has mainly deterred comments and looks so it’s a good one to perfect. Generally most people will look because it’s caught their attention and not for any particular reason. And there may be those out there that are actually sending a ‘solidarity’ look. Those glances between parents that know and understand and have experienced this are like a burst of energy and love at your lowest moment. Anyone else a sarcastic ‘thanks for sharing’ in your best fuck off voice works well.

I hate seeing disabled kids glued to iPads. I’ve seen some on social media that beat their parents the second it dies or loses signal in a shop. One mum shares her daughger hitting her over it and it’s horrendous as they are now massive.

They make the problem worse once they become reliant on it.

Ive been where you are. My son used a buggy until he was 6, I always knew he would probably need a wheelchair as he got bigger but didn't want that for him. In the end I did it and its been amazing for him as its his safe space.

Here's a few of my thoughts and suggestions.

Let people think what they want. You know you are doing the best you can for you and your child so ignore it. It doesnt make the comments or stares go away but eventually they wont matter. With this in mind, I keep the phrase "if they dont mind, they matter, if they mind, they dont matter"

Accept that your child's, and your experience of a day out, will be different from other families without your challenges. That doesnt mean your experience isnt any worse. Just different.

A sunflower lanyard might help, if she wont wear it, attach it to the buggy. You can get carer lanyards too if that might help you.

Pre-empt issues, picture where youre going and see it through her senses. Is it going to be very bright? Try sun glasses, very loud, ear defenders. Etc.

Ear defenders and headphones are both handy. You can take a soft blanket, use it to tuck tight around her, or drape over the buggy to black everything out (being careful of it getting hot)

Audio books played on the headphones, my son likes Mrs honeybees stories.

And try not to be so hard on yourself. No one gets given a "your child is autistic) manual. You make it up as you go along. Wing it.