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

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

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.

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.

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.

" 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’m pretty sure they do my friend’s married to a town planner and there is a stipulation and requirement for Green spaces to be available.
I live in an urban built-up area and there are three that are walking distance even without a pram so stop Trying to allude to obstacles that aren’t actually there

Sympathy here too! It is hard but I agree with pp that you can't control what strangers think. You know your DD and her needs. They don't. You are the adult in charge. They are not.

I will never forgive the woman who came up to DC who was having a noisy tantrum in the park and said "you are a horrible child". I was just waiting for DC to calm down so we could go home and he was not in anyone's way. I could barely speak so I just said "thank you" in the coldest most bitter way possible. Her husband then came up to me and said "she is only trying to help". Years later I still wonder what the fuck she said when she was trying to make things worse!

Take DD to places that she enjoys. Shops can be difficult if DC doesn't like them - I went over to online shopping or shopping by myself while DC was in school for several years. Make life easy for yourself and for her. It's a balance.

Definitely try to get together with other parents of kids who have ASDs. It gave me some reassurance that I was doing more or less the right things, and also gave me a sense of proportion because some parents were dealing with more difficult and more strange behaviour than I was!

The more you do it the more you will comfortably doing it - my middle child is nd I ised to find it incredibly hard taking her anywhere! Any change in routine or were in a queue she will start kicking my ankles, the comments i get then are a lot ! Now i don't care what people think they have no idea. It will get easier the more you do it 💖

Well first, for 'missing out' seek out SEN days and companies, theres a LOT and all parents will be in a similar boat.

Cinemas, theaters, sensory cafes etc... all do them, many soft plays have special sessions. Where I live there has even been SEN summer clubs on.

Second, a lot of parents can relate to the nightmare of taking young kids out it not even a SEN thing. My older DS on his own was fine, hes autistic but we are lucky that he is no bother (his traits make him incredibly easy, show no emotion and follows instructions to the letter like a little robot). however when his siblings came along taking all 3 out (or even just 2) is so much hard work that we avoid it and miss out.

They will just always fight when together, at least 1 will always not be happy about something. My younger DS (very social/hyperactive) won't want to leave and will cry every time at hometime ruining everything and my DD (suspected autism) will often get overstimulated, overemotional and shut down then completely meltdown and run off so we end up having to split up (divide and conquer) and its always just miserable. No matter how nice a day it should be we all end up hating it at the end.

Oh no, that's not on. My balance isn't perfect and someone pushing me unexpectedly from behind isn't safe. Sunflower lanyards and special needs make no difference to that. He shouldn't be putting hands on strangers. You should have said something.

There's making allowances and then there's respecting other people's safety.

(edited for wrong symbol!)

I have a severely autistic son, non verbal, very noisy! He is now an adult but I remember how awkward I felt while out and about with him. Eventually it dawned on me that I was never going to see any of these people again and didn't need to feel apologetic for his behaviour. He is who he is and to be honest most people have their own crap to deal with and probably don't give us another thought.

My boy is 15 and severly disabled...we get lots of comments! I usually ask if they'd like him for the weekend!
Not arsed what people think anymore! He's my 15 year old baby, he loves cars, trains, lights & animals. He has a Suprapubic Catheter, Gastro drainage tube, surgical JEJUNSOTOMY and seizures. He functions at about 3 and flaps so hard when excited it looks like he'll take off!!
I'm so proud of him because we have worked very hard to ensure he functions in the real world. We've taken on all the challenges and now we get by quite well outside obviously still with moments.....and Tescos still causes WW3 ...but sainsburys is a winner!
Stuff everyone else, my child has as many rights as everyone else in the world and I'm going ton ensurevhe has a great life!!!

One thing I learned is not to let tears and tantrums spoil things. If we had a nice afternoon out with a huge tantrum in the middle because DC was over-stimulated or wanted something he couldn't have, or at the end because DC was over-tired or didn't want to leave, well that didn't mean the whole afternoon was spoiled. I hold the good times! (Might need a large gin afterwards though)

Mate, I feel you! I get anxiety taking my son out cos everyone always has an opinion!

Get yourself a little list of places you can go without too much fear of other people.

Places we go- Butlins, the zoo, swimming, and theme parks. We go to the park earlier, or later in the day- when it's less busy.
SEN soft play sessions- we go to several so there's always something, or somewhere on the horizon.

Also, kit the house out with plenty of toys, and make sure there's stuff in the garden for the days you can't face others.

BTW- I've just upgraded my son from his pram, to a wagon. Out n about one is £495 and in stock at John Lewis at the moment, suitable upto around 7 years of age. Seems a fair few SEN parents are buying them.

Not quite the same situation as you but my son had a genetic disorder and he had a feeding tube, medical equipment, stoma bag and from quite young age he didn’t exhibit developmentally normal behaviour. Going out at first was a bit hard because I felt people would stare and ask questions - and some did. And do you know what I didn’t care because we just had to get on with our lives. Says much more about them than us.

I agree it might help you to find a support group of people who understand some of your struggles but becoming a recluse isn’t the answer!

I get it op it's difficult what I've found is the older the children get the comments and looks seem to die down.
I'm not gonna say they stop because one of mine is now 18 and I've heard the sly comments about her when we are out.
Depending on my mood i'll either ignore the comments or try and educate the person.

I have a 5.5 year old autistic daughter and been where you are. The stimming becomes a lot less as they get older. My little girl can regulate herself. I find going to soft play at 5pm (last session) is amazing. So quiet and my little girl has a ball. Her tolerance for noise is still an issue but she can tolerate a lot more now than she did at 4. Parks, feeding the ducks she loves. We had the same issue with the buggy. Only use it when you are running into a shop, or if it’s too long a walk. My little girl doesn’t use the buggy really anymore. We did take it on holidays with us as she likes to be safe, strapped in with snack/ipad. She is a flight risk so also took it because she would also run off. This is getting better too. Try not to let other people get to you. I’m great at staring back now. Things do get easier 🌺

You get used to it

I spend more time mixing with other SEN mums and go to sen groups and sessions.

It's tough when everyone's staring and commenting OP. What about buying a couple of tshirts for her to wear saying she has autism.

I think it's important to remember that she's not missing out on going to places if she doesn't like those places because they're too busy for her. If possible try going at quieter times if it's just the busyness she doesn't like or choose quieter places to go. Do things with her interests in mind, rather than what you would expect a NT child of her age to like.

Well they need to go shopping and maybe enjoy a coffee !
Some people with asd like beach some do not

Op you learn to smile and wave
Get a disability buggy like maclaren major if she too big for baby buggy

Not quite the same situation as my son isn't autistic and doesn't stim but he's 9 and in a wheelchair and people do stare, especially when they see him talking like a typical 9 year old etc I even had an adult ask me on the train the other day if he could walk. It was almost as if because he seemed to be acting like a typical 9 year old, why would he be in a wheelchair? 🙄People are still incredibly ignorant.

It's very hard at that age so don't put unreasonable expectations on yourself to somehow 'cope with it better' . If people say 'too big for a buggy' try to reply calmly 'She is disabled, she needs her buggy' and leave it at that.

I think there has been so much awareness raising around high level autism that the general public are actually less aware than they used to be about the very high and very complx needs that severe non verbal autism entails.

Staring is very very hard to cope with in the early days and to some extent not avoidable. I have a severely autistic son ( adult now) and I can't help being drawn to other special needs children - although hopefuly more to help ! Severe autism is still thankfully quite rare compared to its high exposure counterpart and most people do not typically meet severe kids in their daily life so it's baffling for them . It may make them think 'Gosh I must be a better mum than I realise as none of my kids are like that'

Can you network with other parents in the same boat ? There can be safety in numbers. People are less likely to throw out foolish and ill judged comments to a group than to an individual parent.

This. A thick skin is the only way. I speak from experience, my son is 10 and is entirely non verbal aside from the nosies he makes. Just ignore.

They should feel embarrassed, not you. Their ignorance is their problem. I used to be so socially anxious and aware but since the arrival of my daughter and the loss of control that brought, I've done a 180. I jokingly say I left my dignity and sense of embarrassment at the doors of the maternity hospital.
I can promise you that the vast majority of people are looking on at you and your dc with empathy and admiration. Bring them wherever they feel comfortable and feel proud to be the great mother of a child who is lucky to have you.
There's actually nothing that impresses me more than a mother who cares for a child with special needs out and about.