Siblings of children with ASD (and Special needs) - Help, info advice...

[LunarRose]

Ok so we'r pretty good at dealing with DS (3) needs, we can get him out and about BUT he does need a lot of help and attention.

I'm beginning to worry about how this is impacting on bright NT DD (5). Am starting to worry about it limiting her and wonder how other families/non asd siblings deal with this.

Sorry if I'm not very clear what I'm asking, having trouble wording the stuff that's worrying me..

No, you are very clear.

Sorry, can't help as both mine have autism

Which I personally think is easier than having a mix.

But bumping for you.

Someone will be along soon.

What do you want to know?

Having a sibling with SN can be hell, but it can also be a door into a lovely alternative worls - usually it is a mix of all for mine. My youngest has severe physical and learning difficulties. My oldest is 11, the youngest 8.

Tell yourself to ALWAYS accept offers of help from friends - even if you just say, "yes please, I'd love to accept on another day" - and "carry over" the offer to when you need it.
People really do want to help.

Have a look at this sibs website. I went to a talk by the founder - she was great.

Your local NAS branch may be able to give some advice - some run groups for siblings of children with an ASD dx

Can you arrange for one parent to spend time with DD doing something special just for her each week? Or 10 minutes a day? Maybe give her a slightly later bedtime to fit this in, or swimming with Daddy on a Saturday morning. DP's sis is in the opposite situation to you, so we and his brother make sure we take her two out seperately sometimes as a treat - 3yo NT DNephew loves car shows and will happily come with me for a day out although that might also be because naughty aunty Pidj lets him have ice cream and sweets and lets him "drive" my and my mates classic VWs

ive 3 dc one of which DS is ASD and yes whatever you do it will impact on them , you can do lots to try and make it less so as melt says ie offers of help GRAB THEM so you can take the other DC out separately sometimes to the things that DS wouldnt cope with n vice versa a nice relative take DS out or over their house for the day to give you all a break another thing to try and im sure you already probably do is that you when get a chance(not often i know) to spend some special time with NT DD , still finding things you ALL can do that dont stress the whole family out is very hard as they get bigger esp one thing to remember is everything changes some aspects improve as they get older whilst others can deteriorate so some things that seem bad now may not always be so. HTH

Also, the siblings do get some advantages -getting to the front of queues, to park on the double yellows with the Blue Badge, extra help in cafes etc.

However they sometimes do HATE their sister - like when I tried (on my own) to take them to the next village panto but she was so frightened we had to leave at the interval - and there was no-one I knew in the audience who could keep my other two till the end. Kind people offered, but we were new to the area then and I didn't know them.

I have learned to have another adult with me if I think we might need to make a quick exit for any reason.

Mine are older, ds1 (8) has AS, ds2 (6) is NT as is their 2 year old sister.

We used to be able to take ds1 anywhere as he was pretty compliant, but as he's got older its become more difficult. Partly because he is no longer compliant and has a default setting to want the polar opposite of everyone else in the family and partly because when we do go out he is bigger (obviously) so people's perception of him has changed so we have to be more vigilant of his behaviour, some of it would have been ignored by others when he was a toddler.

We went for a lovely Sunday stroll along the tow path the week before last - NEVER AGAIN! We had all three dcs, with dd in the offroad pushchair, plus two dogs and ds1 was the only one we struggled with. I spent the whole time steering him away from the edge before he fell in and trying in vain to get him to move out of the way of people that wanted to pass, with him blissfully unaware of their presence.

We are starting to find that ds2 is beginning to resent ds1 these days. Its a combination of things, firstly we reckon that ds1 takes up about 90% of our energy and resource and the other two end up sharing the 10% scraps and secondly, we are restricted in the places we can go, as if we go somewhere ds1 doesn't like or can't cope with, there will be an inevitable meltdown, which ruins the day anyway. eg We have never been to the cinema, because ds1 is phobic of them and last time we went to a VW show (which ds1 usually loves) he panicked because it was on a new site he hadn't been to before and we ended up eating a picnic in the carpark, then leaving.

Poor old ds2 jumps at the chance of going to the diy store with dh, just to get out somewhere. Last weekend when we said we needed to go out he piped up "I'll come" immediately, we said "but you don't know where we're going" and he said, "I don't care anywhere is fine, I just want to go out". He is also ridiculously excited about his day off school tomorrow to go to the eye hospital, because it means a whole day with Mummy without ds1.

We are planning to do start planning days out individually and/or alternate weekends when they get to take turns in choosing where we go.

Is there someone who could babysit for ds once or twice a month so you can have a day out with just dd? That's our other option. Ds1 adores my Mum and likes her house because its calm and quiet, so sometimes he's happy to be dropped off there while we go out with ds2 and dd for an hour or so.

Gah, took so long to type all that I've cross posted with everyone.

Sorry!

Thank you, I think you've all hit the nail on the head,

She's got a lot of issues going on at the moment (inc access issues surronding her Dad my ExH) and cos I've been finishing a PGCE and getting DS diagnosed I think I'm only really starting to unpick what's going on . Also I think she's suddenly grown up a bit an the gap developmentally and therefore interest wise has suddenly widened.

Sibs site- spot on I think some of those little ideas would really help.

It really does seem to be about making sure she had some separate time from her brother as well as time when we're all together. I will have to work on that. The swimming idea is a good call.

Also, get onto the queue for holiday playschemes for your ds. Is he in SN or MS preschool? Many of the SN ones do holiday playschemes because they realise the holidays are hard work for families and siblings.

Moosemama & melted mars bar - oh that's so true. I think at the moment she's resenting the time I/DP and I have to spend to get DS out and engaged and also the limit on the activities we do.

It's blown up this weekend cos we went to Disneyland Paris and she had a meltdown on Saturday, at the time I couldn't work it out at all, but now I realise cos I wanted it to be about spending time together there was stuff she wanted to do but could because it wouldn't have worked for DS. the easy access pass helped, but it must have felt for her like it was all about him.

It's awful when you suddenly realise you've been handling something wrong.

Melted, DNiece's TA's do overtime as respite carers, she has a couple of lovely ladies who take her out for a couple of hours at the weekend and for days in the holiday (Special School).

Moose, remind me where you are and we'll see if we can sort something dub-related out, if you think an extra pair of hands at shows might help?

I constantly worry about the other two - but have learned that there is so little I can do about dd2's learning that I don't bother getting het up about her school programme.

LunarRose, don't feel bad, you haven't been handling it wrong. Its a steep learning curve and the whole fight to get a diagnosis is all encompassing for a lot of us. I'm only just starting to put my head above the parapet and my ds was diagnosed three weeks ago. I am sitting in the chaos that used to be my life and trying to work out how to get the control back, whilst knowing in the back of my mind that the fight is nowhere near over - nor will it ever be really.

Its hard enough trying to be there enough for all your dcs when they are all nt, we can only do our best and the fact that you are here, shows you already do that.

Honestly, its amazing what a special trip out or two with just Mum or Mum and Dp can do to perk them up. Ds2 is on cloud nine today, because he knows tomorrow, despite having to have horrible eye drops and be prodded and poked by a succession of doctors, he will get to spend time we just Mum, be bought a little treat and have lunch out. It'll set him up for the week at least.

So that's somewhere to start at least.

Such a shame about your Disneyland weekend. Maybe you could do a scrapbook of your trip with her, all about the positive parts to help her see it was her weekend too and she did have fun?

We are doing Legoland and a hotel overnight for the boys' birthdays this year (their birthdays are a week apart) as they have both been desperate to go. I'm extremely nervous about it and also slightly concerned that its going to cost a fair bit and ds1 might not actually want to go on anything.

Hi Purple, we are in the Midlands, near Warwickshire. Not sure about the shows this year. We seem stupidly booked up, but give us a yell if you're going to be at anything local-ish and we'll see what we're up to.

VolksWorld, Big Bang, GTI Spring Fest, VAG Fest, London Volksfest, VW Action are all the ones DP works at. We also enjoyed Deva last year - it'd be nice to do at least one where DP isn't stuck in the tower commentating all day, then on the gate half the night

all sounds completely familiar moosemama we cant even go kite flying as DS always runs to the cliff top edge and its the best place to go to fly kites which they all love,walking we used to do that for reasons you described we now cant do that ive two dogs and ds takes all my attention so cant take them and my DS and DD who are NT i know do resent it but still we do keep trying in the vain hope the place weve decided to go today will be ok they all 3 love going to theme parks but even in the disabled shorter queue ds often has a meltdown if he cant get straight on just make sure you have enough help so the other DC still get to go on the rides if DS doesnt want to and take something to play with my DS never goes anywhere without his ds and psp lol lifesavers

I have DD6 with Aspergers and DD8 who is NT.
DD8 definitely is jealous of all the time I have to spend dealing with DD6 and making sure she doesn't 'loose the plot' when we are out.

I have made a deal with DD8 that we will have a special girls day (just me and her) once a month and she chooses what we do. It's her special treat for having to put up with the drama/chaos often caused by her sister.

Purplepidjin - whats the VAG fest?

I have bookmarked the Santa Pod ones now - ds loves cars and that's do-able from here!

great idea Jent18 i will do that too i already do do it iyswim but dont have a definate day pencilled in but maybe doing that will make them feel better and have something possitive to look forward to

It has been mayhem in our house with DD who is fine and DS who is on the start of diagnosis for AS.

DD is 9yrs and is a very caring girl. She has to put up with DS being jealous of her because he cant write like DD or draw like DD or play a game like DD so the frustrations and meltdowns are endless. But he constantly wants to play with her and so the circle begins again.

We went through a spate of my DD raising her voice and having hissy fits despite her age because she had worked out when DS was on a meltdown or raised his voice etc I would come running.

She has cubs and after school clubs to go to and is old enough to go out and play so that is her respite but I got to be honest a rainy day with both in the house is hell. :o

I have had to sit her down and explain that DS has issues and real hard time at school with no friends and that she is fortunate to have feedom of friends and clubs to go to where as he doesnt due to behaviour probs and she has been a bit more understanding and accepting of the situation because there is a reason for it rather than her kid bro being a pain :o.

We try to have "special days" where she has me to herself. So I use this to calm the situation down my saying "cheer up our day is coming soon" and she has a target to look forward too and I use these days to let her vent her frustrations or worries out so she can talk about them with my full attention.

At night I always hug her big time and say thank you for being my big girl. It makes her feel good.

Volkswagen Audi Group - it's more water-cooled than air-cooled.

Hmm at the time I was cos I'd saved to get us there and it was a special treat after a rough year (the autism diagnosis was probably one of the easier bits ). I was thinking how she was upsetting everything and being so ungreatful

But it probably highlighted what was wasn't working for and I'd been puzzling to work it out for a while. her attitude makes much more sense now.

Please keep adding ideas and experiences they all help consider my own

Think I wil def do the once a month girly day

im having the same problem now mine are older as its as if every day is a rainy day as DS cant play out on his own and the older two just dont play anymore they are 14 and 15 and now more than ever the "personal space" issue has reared its ugly head im going this week to get bathroom door handles for DD(15) and DD(14) bedrooms , they cant even get dressed alone or do homework without constant interuptions but even for older siblings i do like the idea and will put it into practice of your cheer up day is coming now why didnt i think of that