Should we just stay in??

[cansu]

This is possibly a bit pointless but cant help thinking that most people would rather those of us with kids who are challenging and very disabled should just stay in or only go to special sn sessions. I am utterly worn out with coping with iur situation and still feel that whatever I do is crap. Rant over. Carry on as you were.

I often feel like that after a bad day out. But no, we shouldn't. Though it's hard to ignore the stares and comments.
Hope you're ok

No you shouldn't. Everyone has the right to enjoy the same things.

Nope don't stay in, I know it's sometimes impossible to get an even harder skin to it but I push through and become determined to go out with my child regardless. I chant to myself constantly in tricky situations "my sons entitled to a childhood too" and it gives me extra power. Sounds ridiculous but it's my secret weapon.

Thank you. I honestly despair but also think that if I didnt have these kids might well think the same which is v depressing. I feel like a stranger really in a foreign country.

I'm just getting over two awful days out with extended family visiting and thinking exactly the same as you OP, with the addition that do my DC even benefit from outings/holidays as they tend to go into a shut down even after a seemingly enjoyable day...

I think most people have absolutely no clue and this is mainly because people's experience of disability is so limited if it doesn't directly impinge on their lives. I am also a teacher and the things my colleagues say speak volumes about their level of understanding. If I hadn't experienced it I really couldn't believe it myself tbh. How can you explain a child who damages furnishings for sensory reasons? How can you explain a child who hits himself? How does this fit in with the whole quirky child genius or socially awkward computer games addict that is the widely accepted NT view of autism? I know that this is part of the spectrum but it is just a bit of it.

I thought your posts on the other thread were excellent cansu, but I just can't bring myself to post on threads like that anymore as some posters get very combative when they see mine and others people's names.

I think some people have a very sanitised experience/view of autism.

People would probably see my ds in public and consider him the typical geeky gamer type, but anyone who's read my posts over the 8+ years I've been on MN will know it's not been an easy ride at all.

But, no, we shouldn't just stay in at all, that didn't work in the past, and, if anything, generations of people who've grown up with little experience of disabled people in their lives has not helped at all.

I know you're right Polter. I shouldn't post on those kinds of threads as it just upsets me and doesn't change anything. I know you have most definitely had your struggles and have given me some great advice over the years on here. People just see autism as being someone who is unsociable and ignore all the other parts of it. Either that or they think my child may have a special connection with an animal or have some brilliant gift! Lesson learnt about AIBU

I haven't read the thread - but have absolutely no doubt which one you are referring to. Well done for venturing forth on there. Even if you can't change the direction of a thread, I will guarantee you will have boosted the feelings of others who feel like you do but only lurked.

For some inexplicable reason I started a thread on AIBU recently and realised too late it was a stupid idea. But some of the replies were so understanding and supportive that it ultimately was worth it.

Posters that usually frequent the SN boards have been a source of immense support to me and I'm sure many many more.

Thank you cansu, Polter and many others.

No no no, don't ever feel like you have to stay in.
I've said this before, but due to other things going and when DS was recently diagnosed with having SEN, I was depressed, I didn't go out (unless I had to do shopping, nursery, et). I was sad over DS's predicament and plus when he was young he was a nightmare in public .

I hugely regretted it, I allowed people's (strangers!) perceptions of DS and my parenting effect the way he should enjoy his childhood. So now, I don't give care ! We go out most days...if not everyday ! Some days are hard, but I tell myself "I'm going to slay another day" and we go back out again !.

You can do it

I don't like staying in. I know my ds gets bored being inside and he needs to expend energy and have fun but it is so v stressful going out as I am on edge that something will go wrong and I won't be able to manage my ds or that he will grab someone or me. Most of the time he is ok but noises or problems in the usual routine can be triggers for really difficult behaviour. I am super vigilant but as you say other people's reactions are not always helpful! I force myself out most days or his dad takes him out but we are v limited in where we can go and we are both cautious and far from relaxed! I sometimes think that this is why so many people know so little about disability because we are all so careful and limit our excursions. I am often the person at the pool ultra early or late or out for a walk in horrible weather as I know the places will be quieter.

cansu You don't have to go out if your feeling tired or not up to it. I assumed you didn't want to take DS out because of other people's perceptions.

Don't do everything in all in one go. Take small bite size steps and build it in. Go out to the park (for 10mins) take a step back and interview if necessary. Invest In a scooter if you have one, seems to be a lifesaver when going out for long walks. Don't feel down . Remember to take small bite size steps, don't beat yourself down when you need a break and want to stay in.

• intervene, not interview

"I'm tired of people assuming that I think or feel as I do because I'm experiencing SNlite."

Yes to this.

Yes - you should definitely go out! But definitely put on your thick skin... My SN daughter is 2 next month so we are very much at the early stages of this but I try to make sure we get out regularly even if it can be a bit of a chore and the easy option is to hide away in the house!

We haven't yet encounter too much negativity from people but she is small for her age so people assume she is much younger than she is and will often comment sympathetically telling me she is just tired or some other pearls of widsom, when I am just smiling politely thinking no, she isn't tired, this is just her sometimes. I am sure as she gets older, people will be a lot less sympathetic and I will have to grow some more thick skin!

I definitely do think that some people who don't have first hand experience they can be quick to judge. I also, being 100% per honest, probably found myself guilty of that in the past at times before DD2 came along, so I do try to cut others some slack, however hard it is and however much I feel like screaming at them.

We've triumphed recently with sandy parks (google them apparantly more towns and cities are investing in them), and paddling area parks- my sons 8. Don't get me wrong, my child can lash out suddenly (smacking screaming self injury and hitting us ) totally unexpectedly which even rhino skin would flinch at,so I tend to hover and I don't spend long in places - I've built it up from 20 mins to now about 45 minutes.
Hunger can be a trigger so I make sure if it's an early morning trip he has a belly full before we venture out and avoid activities which are more then 2 hours since he last ate- I've noticed a pattern for difficult behaviour in that circumstance.