Do you feel like you've created your own 'bubble?'

[siblingrivalry]

I'm feeling really thoughtful tonight and a bit down and sad.

DD1 is 9 and has AS. We have just had a couple of days away and stayed in a hotel and dh and I have both been given a kind of wake-up call. We realised how much our home life is set up to be supportive for dd1, with her routines/ various phobias etc accommodated for.

We tend to avoid public places when they are at their busiest, restrict activity and visitors when she is struggling ...and so on ...
It feels like we live in a bit of a bubble sometimes, but that's how it needs to be so that dd can cope.

Anyway, when it isn't possible to put all of these structures in place -which happened while we were away - we saw how much dd relies on them. She was constantly checking and re-checking the day's plans, stimming more frequently and was disorientated.

Our eyes were opened to how poor her sense of danger is and how unaware she is of road safety and what is going on around her. Of course, we know she struggles with these things but it feels like a light was shone on her difficulties when we were out of our normal environment.

And now I feel quite sad, but I don't know why really. None of this is a surprise, but I think it's affected me more than I realised.

I suppose what I'm wondering is if other people live the way we do -adapting to their child's individual needs until that way of life becomes normality?

Thanks in advance.

To be honest, we do it the other way. We always carried on doing things we wanted to do and DS (ASD, nearly 5) has now adapted to it. Obviously, there are things we have to look out for like making him holding our hands when out and about as we can't trust him not to run onto the road. It was difficult at the beginning, specially social gathering and visitors when he used to cry a lot and DH and I spent all the time trying to keep him happy. It was a bit easier for us to explain as he was still a toddler and was not eating at all, so we always had some excuses. He did not play with any kids and would only wanted to play with his cousins. He is still somewhat the same, will stay around other kids and sometimes tries to join in and sometimes plays alone, but very happy to have visitors at home. When we go on holidays, he loves the change and never seem to have any problem with adjusting any more. When he was younger, he used to go off his food completely when we went on holidays to new places, but it has now changed. We also don't have to carry too many things around for him (we do take toys and things, some snacks etc). Until he was 4, we never managed a sit down restaurent meal, but he is ok with that now as well. We used to have a lot of staring people, I guess we still get that every now and then (you can see in your their face that they think what a naughty boy), but we don't have to tip toe around his needs anymore, it's more like he is adjusting to our lifestyle. Having said all these, we only go on holiday to places we know DS would like (eg where he can swim, big park), so we can't be absolutely sure that he is adapting to our lifestyle. DS is still living in our bedroom, sometimes sleeping on our bed whereas DD 3 is sleeping by herself since 6 months old. We only think about it when visitors come and tells us he is nearly 5 and should be in his own bedroom. We probably don't even notice how we adjusted our life for his needs.

Sorry if I am giving mixed messages. What I am trying to say is that we tried to continue doing the things we like to do and although DS did not participate in it at the beginning, he seems to be more willing to join in now. So it's like he has adjusted in some cases and in some cases we adapted things for him.

I've emailed you sibs

I can relate to your comments siblingrivalry. I hadn't realised how much our lives were adapted to DD1's needs until I spent a weekend completing her first DLA form. It made me thing about how much I do for her in terms of interpreting the world for her and making our home life fit what keeps her comfortable.

It was a shocking wake-up call, which we haven't had through holidays because we have a caravan so that we can take home with us.

It does make you worry how they will manage in the big wide world when they're older.

We've had to create our own bubble in order to accommodate ds. He's not interested in inclusion, prefers to do things his own way!

We now just take him to places that are safe and appropriate. We don't even bother with many environments - saves hassle and stress.

We've just had to accept that this is how it is and we work around it - no other way tbh.

Thanks everyone for your posts. This is something I have thought about all day and it'd really interesting to read your comments.

A lot of things have come about as a result of experience, to be honest. For example, dd has a lot of sensory issues and has always found busy shops to be a nightmare. So although we take her shopping sometimes, we never do it at busy times and there are always two of us, so one of us can take her outside if it gets too much.

Like Manny says, some things are just to stressful to contemplate.

AL1son, I felt the same as you when I first did the DLA form -and found it utterly depressing to be honest. We also use a caravan for most of our holidays, because it gives us more control - dd is relaxed in a caravan, so think that we will be going back to that!

Tiredmummy, I see what you mean about including dd in the things we want to do - we have always tried to make sure she is included in elements of most events/activities, but she just can't always cope with the full experience, IYKWIM.

Streaky -thanks, will email you now x

Hi SiblingRivalry,

I also had a huge shock when we went away for the bank holiday. DS1, also 9 and ASD, totally ruined the holiday and we all had a terrible time, and we vowed we're never going away on holiday with him again.

But like you, I didn't really realise how bad he was, because at home he isn't that bad.

Still feeling stressed and depressed by at all.

I can't really contemplate getting him to adjust to kind of life we'd like to have - we're parents, we gave up our way of life years ago.

'But like you, I didn't really realise how bad he was, because at home he isn't that bad'.

You see, my ds is exactly the same way regardless of where he is! He doesn't care about things changing and he has no routines. However, he is challenging in other ways: he can never be trusted, he has a reduced sense of danger, he loves to climb too high given the chance, he is extremely fast and very physical, etc. Add all of this up and we have to pick our environments very carefully but it does mean that we don't feel guilty about not having him try out various things. On the contrary, we leave such things to school and playschemes. One enterprising scheme even took him horse riding!!!!

My email is down atm so will reply when it's working. Just wanted to let you know I'm not ignoring you!

In a word, yes!

We do take the boys shopping and do normal, routine things with them, but that's because we have no real choice. DS1 usually enjoys it, mind and we do take care to go to places that aren't too stressful. Heck, I hate crowds, so certainly wouldn't expect the boys to put up with them - specially given that I'd probably melt down first.

Apart form short stays with my parents, we've been on holiday twice since DS1 was born. The second time, we came home early - partly because the accommodation was grotty and partly because both boys were pretty difficult. We limit stays with my parents to 2 nights.

sibling
I think you get used to stuff, life is normal and we naturally 'normalise' every step that takes us away from the norm.
Every now and then it comes back and kicks you in the face - sometimes its obvious stuff sometimes its silly (I had a lump in my throat recently just glancing at some hair gelled and after shaved young boys, so obviously on their first big night out )

I know DS will never have that - its no suprise - but sometimes it just gets me.

I have no advice but I know how you feel xx

I can see so many similarities in these posts - and I agree that holidays are incredibly hard, given that they are supposed to be spent enjoying family time and recharging our batteries.
PeacefulLiz, I'm sorry you had a bad experience and that it's put you off - it's hard to get back on track afterwards. I can't shake of the 'flat' feeling I have, although I know it will pass.

Manny, I also used to feel really guilty about dd not being able to join in lots of activities -then I realised that she didn't actually care, it was more about me worrying that she was missing out. And dd2 is really outgoing and likes to join in stuff, so that also made me feel sorry for dd1.

Ouryve, it sounds like you have struck a balance, which I feel like I am always doing. I have decided to take the positives from this experience and work on the areas where dd really struggled -it certainly flagged up her main difficulties!

feelingbetter, I have read your posts since your ds was born -how is he at the moment?

I didn't think we did.. And compared to my childhood and what my parents had to do for my sister ( Dws.. ep...mild Cp) it meant that I didn't consider our lives that different from " normality".

But actually we adapted our bubble without even thinking.
Routine.. Treading on egg shells.. Constant look out for triggers.. Making sure the is a calm down area both in the house and out if the house. Etc etc

it really hit when ds2 was away on a residential trip.. And we had just ds1 and dd here.. They were able to have a cushion fight .. We ate at different times of the day.. Our lives were without ridgid structure and nobody had to think beyond what was occuring in the moment.

Having said that.. Ds2 will have to live in the real world.. So we try not to bubble too much.