Days out just don't really ever go to plan do they?

[TeeCee]

My 2 best friends and myself took DD1 and DD2 to see The Gruffalo today.

Upon reflection and hindsight being a wonderful thing I should have known really, but I'm guilty of just cracking on and throwing DD1 into situations, as if she didn't have Down's syndrome and dealing with it when faced with it, whatever that might be.

I was fine until the mouse got the audience to scream. She just doesn't do mass screaming, and who can blame her? It wasn't nice and she sat on her godmothers lap with her hands over her ears and was upset. I was going to leave but then she seemed to start to enjoy it again. i could see her 'happy hands' (!) and I relaxed.

Cue the Graffalo coming into the crowd and coming straight up to DD1! I couldn't see her face but the Gruffalo's expression confirmed what I thought might happen.

I should have taken her home but we thought the planned idea of the Rainforest Cafe might take her mind off the scary Gruffalo and she said she was hungry.

On the way she was confronted by another major fear - balloons.
A group of boys wrestled a huge balloon display outside a restaurant and one popped literally right in her face!
The timing couldn't hav ebeen worse. Those little hands ddin't leave her ears and she was very stressed.

Once inside the Rianforset cafe, after 5 minutes of 'Noooooooooooooooooooooooo's she calmed down and seemed very happy with the crayons and again I relaxed.

Cue huge Rainforest Cafe thunderstorm.
She freaked she was clinging to anyone and everyone. We had ordered and other friends had joined us so we moved to a part of the restaurant that was actually not being used but our waiter agreed to serve us there. We got through a meal. Ish!

We had pockets of happiness but on the whole it was stressful and upsetting for her and in turn for everyone else.

Meant to add:

I have learnt / am learnign this:

• DD1 isn't like other 5 year olds!

• She doesn't do change. Makes holidays tricky. She needs the break from school. She would be happy with eating toast drinking milk and watching DVD after DVD all day every day. However this would send her slowly mad and us quickly mad and she does need stimulation and to a point enjoys it. I just need to think more about how much it'll be for her etc.

• She is noise sensitive. Must phone ahead and check on noises we may encounter along the way!

• What is ok one minute is not ok the next!

• I really need to learn to be a better mum to DD1 and her needs and not just crack on with stuff like I do.

• Having a child with DS is harder than I make out / think / act. I'm finding it harder these days and there are days when I don't know how well I'm coping and what I should be doing

• Sometimes I feel a bit out of my depth and I don't know if I'm doing this right and it's all a bit scary.

Yep - same as that Socci, I just had to let her carck on on Xmas Day and leave her to it to limit the stress levels, same with her b.day.

Such a shame that what should be great, happy days are so hard for our DC sometimes.

Sending big hugs to you Teecee {{{}}}

I think accepting that:-

1. you know dd1s limits iykwim
2. Thinking ahead always helps. So I always have a plan. When I took dd to our successful London trip I had a bag full of pens paper etc. Do you use a timetable with dd1?
3. Try and avoid noisy places. Not easy I know but my dd is noise sensitive like your dd and I try and avoid things like fireworks, noisy situations as I know they freak her our
4. Know that you can go if things get too bad. You don't have to stay!

It is hard but I think I always plan beforehand and it is hard. With my nt ds I can just go and it's fine but with dd toatlly different kettle of fish.
Take in the summer when we took her to Brighton, now dd loves the beach but she was awful. She played up the whole day and I mean played up and I don't know why to this day but I do know that informing her of exactly what we are doing helps loads.
Alays expect the unexpected!
xxxxxxxxxx

Hi BH

I do have to tone me down to suit what DD1 can cope with. I'm really beginning to realise that. It's just hard and rubbish to stop being a natural mum and think things through from a SN's pov when all you want to do is have a great, fun day out. I'm not totally insensitive but I am a crack on type of a girl. I know I should not have carried on and gone to the Rainforest cafe today.

I did a bit to warm her up to today. Talked about it yesterday, been reading the Grauffale lots and read it every day this week but i didn't see the crowd screaming and that's where it really went tits up!

I'm just starting to really, really see how I have to start dealing with things a bit better.

You live and learn, i know that, but it's sad that it has to be this way.

The 'manuals' tell you that you child will have mottled skin, be prone to being longsighted, prone to glue ear, be slow to learn and so on, but only living with it teaches you what you really need to know.

Children with DS don't really like change, are noise sensitive, have irrational fears....., and so on

Aww bless you

Children with DS don't really like change, are noise sensitive, have irrational fears....., and so on

Can completely sympathise there as so do children with asd. Infact now dd can talk so much more she has told me that change scares her

Don't beat yourself up anyway. You are doing all you can and we all just learn and muddle along iykwim. I know I have loads of work to do where dd is concerned and always will but know like you that I love her more than anything xxx

tc so glad I read this as I thought dd might enjoy the grufalo think I might give a miss. she has cp and gets scared by strange things so a grufalow in the audience could make her laugh or scream. don't think I will risk it.

I know you know where I'm coming from.
Thanks for being so nice

Hi 2hoes. Well all I can say is

• audience is asked to scream, alot, a nd asked to sream louder.
• it's loud in parts ingeneral, even for me.
• we were in the stalls and 2nd row and an aisle seat so perfect for the Gruffalo to 'pick on'!
• It's all about a mouse trying to not get eaten by a fox, an owl and a snake, oh and the Gruffalo, so it was never going to be pink and fluffy. Like I say hindsight is a wonderful thing!

Sorry it didn't go as planned but im sure that deep down lottie probably enjoyed the day.

I have similar problems with Ds, as blossom says ASD kids have similar sensetivities.

I find it hard as it means DD sometimes misses out on things she would normally be doing as DS finds it so difficult.

don't beat yourself up about pushing forward with things, in many ways it may help her. she is getting used to new environments and seeing new things so next time she may not be so worried.

I love the rainforest cafe BTW. unfortunatly Ds wont step foot inside because of all the noises tehy play.

Thanks MamazonAKAfatty, esp for the comment about getting her used to new environments. I feel less bad with those words ringing in my head so thanks for that

i can feel your stressful day from here
why do things not go the way we expect/want them to?
i could probably write a book about disaster days out, in fact if i ever do mastermind it would be MY subject!
don't beat yourself up, never give up trying new/ different things, at one stage we couldn't take our three anywhere. things have improved but we still can't go anywhere where there are dogs or balloons.
And remember each day is different, what doesn't work one day might work the next!

your welcome.

If i allowed myself to feel guilty for everything i feel i could have done better with my two i would be on suicide watch by now, so i now try and see a positive in all situations...even if it just that we know not to try that again lol

i think one of our worst trips was to a big summer fayre, they had a dog show and balloon modelling, and why is it that when we go to the cash point that someone comes and stands behind us in the queue with a dog!

hi onlyjoking, thanks for posting

But what do you do, I mean really?

We have been mulling over going away with some friends to a massive house they have hired for his 40th. Kids invited. Thinking about it now, after today is the decision an easy one - we don't go. Or do we not let the fact she has SN's stop us doing what we would naturally do?

Will it stress her and therefore us, or will it be a really nice break and be good for all of us?

Even if we think she might find a few aspects stressful, does that mean we should all stay behind?

What do you do? Protect her, just incase, from any stress and rarely go out or do we crack on and deal with any issues as they arise as any 'normal' parent?

Oh talking of dogs! I have been trying to get DD1 used to being around dogs for years. My brother has a british bull dog puppy and she's met him a few times and it was... well it was ok. However Boxing day we walk in, my brother takes her into his arms and as he does the cat runs in and the dog meets cat for 1st tiem, cue massive chaos! 105 steps backwards. she's now terrified and so is DD2 who was totally ok before!

go, like you say it is with friends and the house is massive so you can find a quiet place if needed.
we have to keep trying stuff all the time trouble is our three have such good memories that thhey always remember the last time they went to a place and if it was bad then there can be a bit of a wobbler, or three! we just keep plodding away and try not to let all three of them rule what we do, it's never easy thou!

we have a saying in our house, autism my arse. some of the stuff our kids do is connected/controlled by autism, some of it is just down to them being kids!

sorry teecee it didnt go as planned.

I took my dd's bowling by myself on saturday. i have taken dd2 since she was a tot so she knows how to bowl. But i dont usually take her on a busy saturday morning. She went into twirl mode several times, not usually a problem, as i also dont usually take her by myself, so have someone else keeping an eye whilst i help dd1 etc. So dd2 got glares, also almost got knocked out by a bowling ball, and then she got thrown about in the queue to change her shoes afterwards by a gaggle of girls.

i dont do days out unless its in an open place where its easier for dd2 to let go a bit.

LOL! I often think is that just kids and what they do or is that a DS trait?

Do you, in your heart, have to make an exception, or is she just being naughty and a bit of an awkward bugger?

Do you discipline, to an extent, or do you / should you let it go becasue she really can't help it and I shouldn't be putting her through this particular experience and her reaction is one of stress?

You have to find a middle ground really but its difficult not to get the right point between just "giving up" or doing things that just won't work, no matter how much you want them to. I will try things with DS, some that make other people who know him gasp, but I always have a get out plan and go with people who will understand. On the other hand, I think that some people feel we don't do things with him like holidays because we are too chicken, but its simply that it wouldn't work for any of us and we have to accept that and do without. It sounds like that show was just unsuitable but it doesn't mean that others will be (I recommend the Snowman if its on again next Xmas, I think she'd love it). After a hard day though it is good to feel that you didn't give up and got through it but then, its not about us, its about them and what they enjoy and can handle. But you are so right, we can't just let them veg at home and have no challenges.

thing is to keep on trying things, DS was terrible at the cinema he used to hide under the seat, but then he got used to it and sat on the seat, now we go to the cinema most weeks and the previews are very good cos he gets to see bits of new films and then is happy to go again, but he won't go to watch something if he hasnt seen the preview! my girls are quite placid, except when they see a dog! there are a few things we can't do, skating bowling, as we need an adult for each child. we do go swimming but it is hard work as they all need help with dressing and its a full time job catching all the flying clothes when they are getting undressed! plus now DS is 9 and big for his age we get hassle about him being in the ladies changing room.

Hi Davros, long time no 'speak'!

You are so right about the Snowman because we did that 2 years ago and it was a massive hit.

I realise that I was a bit thoughtless in letting the Gruffalo get picked. It's so obviously wrong now. Snowman = fluffy, nothing sinister other than a snowman that comes to life but the Gruffalo - well see my post to 2shoes. It's obvious now.

You're right Davros - it was about her and I think that got a bit lost in my enthusiasm and her Godmothers suggesting the show and us having the book. I need to think more yet still challenge her a bit.

It is, as you say, all about middle ground .

It's not your fault re the Gruffalo, TC. I saw it at the Polka theatre in Wimbledon ages ago and I don't remember any screaming and certainly no great big actor in a Gruffalo suit came anywhere near us! Maybe they've made it more 'exciting' since then. Also, I have a really vivid memory of a Theatre in Education lot coming to my primary school. All the littlest children were at the front, sitting on the floor, and the older ones - say, eight plus, were in chairs towards the back. Nice air of excitement and anticipation. Well, the music starts, and two blokes jumped out dressed in gorilla suits. I tell you, it was instant pandemonium. There were a few minutes of screaming and scrambling, at the end of which all the smaller children were now at the back of the hall or on a teacher's lap, and the two gorillas looked very deflated. I don't think the performance ever really recovered from that! So no, it's not just your girl who doesn't like adults in scary suits right in their face.
And I wouldn't have guessed there would be a thunderstorm effect in the rainforest cafe either! You were really, really unlucky. Don't let it put you off taking her to the theatre or out to eat. Just look for the words 'gentle' and 'dreamlike' in the blurb and stick with Pizza Express and Cafe Rouge etc, where there is never a fake thunderstorm.
As for the house, it sounds fantastic and I'd probably go, and my ds hates leaving the house these days. It's very wearing, isn't it, having a hermit child.

my lot like the routine if we do things lots of times they are ok with it. holidays work really well for us we have been abroad 10 times now and they know the routine, thou the last holiday was a bit of a nightmare with the no hand baggage rule, plus we were worried there may be sniffer dogs!