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..

It doesn't need to be a whole day - mine appreciate even if I can come and walk with them to/from school if dd2 is elsewhere.

Sorry, haven't read all of this but I think there are BIG differences if there is only one NT sibling, if they are older or younger and not the same sex. I find the combination of older DS with ASD and younger NT DD and no other siblings very hard to manage. My way of managing was to use DPs for someone to be with DD while I took DS to activities or vice a versa. I do know several families where the single sibling HATES the one with SN and many where the single sibling LOVES the one with SN, often if the sibling is older.

DS1 (6) is ASD and DS2 (4) is NT. I really don't know how it will play out over time but am expecting some potentially difficult situations ahead but at the moment it is fine. DS2 loves being the one who can do/understand everything quickly, but he does not understand why at the moment.

I worry about this issue ALL the time. DD (NT) is 7, DS1 (ASD) is 4 and DS2 (NT) is 16months, and I tear my hair out thinking of all the things DD and DS2 might be stopped from doing, particularly as DS1 gets older and we can't wheel him around in the buggy, having to rely on his patchy compliance re walking instead.

I do have a lot of one on one time with DD, and so far she adores both her brothers, but she v rarely gets to do things with both parents, as it's usually DH who has to watch the boys at home. And I'm worried that it's always going to be like this. That family holidays (especially abroad) will be out of the question...and then I conclude that it's unfair as hell, but kind of insoluble. Which is depressing. Really, really depressing. Why should all of our lives be sacrificed in this way, adore DS1 as we do

coffepot -
"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."
I think that is one of the ((many) issues at the moment

@ LunarRose

Well the special time with DS seems to work for me at the mo. How long for who knows :) Like someone else said here just a walk to school on their own together is good.

I dont spoil her and make it expensive trips and lots of goodies. Just go for a "big girl" walk with mum and a hot chocolate after. Even a ride to Tescos then pop off to the park after. Its more a chance for them to air their grievances calmly rather than the frustrated stamping of feet and the its not fair and tears I used to get without the time to run and sort it at home. She is so capable I have a habit of forgeting she exists sometimes when running around with DS. So it is also like a calendar date for me too :)

I feel your pain!

DS2 is 4 and ASD, I have NT DS1 who is 9 (though has a few issues at the moment) and NT DD who is nearly 3.

I appreciate my DS1 is a little older than yours, but we try and make time for him in the evenings, even 10 minutes reading a book he likes together. We also have a cinema day once a month where I take him to see a film and we go out for some food afterwards.

What we did at the start of DS2's DX was have a helpful brother chart - every time DS1 was helpful or kind to his brother, and this included aking concessions for him, he would get a point on the chart - 10 points meant a prize of his choice (luckily he is a big mario fan and the prizes he chose are cheap and easy to come by on Ebay) - would something like that work with your DD?

There are some great books that you can get too. 'My Brother is different' really worked for us. You can get it from Amazon.

With DD its easier because when the boys are at school on Friday morning she is at home.

I also try and make sure that family time is fun. Sundays are our family day which means we do things together. I try and show DS1 that being with DS2 isnt always about tantrums and crying.

Its not foolproof and it has gone wrong sometimes, but we just keep pegging away. know what it was like being brught up in a faimly where there was a favourite child (I am not saying that thats the situation here, but I know how children see the extra attention) and I dont want my DS1 and DD to feel like that.

it's very hard

We always struggled with balancing meeting DD1's needs (very high functioning autism)
and making time for younger NT DS1, who was very quiet and self-reliant,and tended to fade into the background. DD always resented any time we spent with DS,and DS became very self-effacing, and didn't think he should push for attention or affection.

DD1 & DS1 are now in their late teens. DD is much more emotionally aware, and comes across as a typical teenager,maybe a tad more self-absorbed and ditzy then average.

DS has grown into a teenage version of his younger self (quiet,studious child,but now with smelly socks and an x-box addiction). He doesn't feel he missed out when growing up,and doesn't resent DD.However, I still feel guilty that we went along with his compliant nature, and didn't find more time for him.

Now we have DS2 (moderate to severe autism) and (as far as we know)NT DD2;same 3 year age gap,same dynamic of very needy AS child with younger NT sibling,and the whole juggling act starts up again.I'm trying to avert previous mistakes by getting DS2 to help with and to play with DD2. We also have Sure start for me and DD while DS is at school.

At the weekend DP takes DS out for a walk/adventure/muck about in the playground while I spend time with DD. On Sundays we try to do something together as a family.I'm lucky to have DP's support. I struggled to look after the older two on my own,hindered by alcoholic ex-H. DP arrived on the scene when DD was 6.

Sorry about the huge, rambling, tangential post. What I'm trying to say is do your best, it generally works out ok, and any mistakes made won't be held against you.

Have you tried explaining to your DD what is going on?

When DS1 was 7 he asked "why is DD1 like this?"
After we explained it made things easier between them and cleared up a lot of resentment. DS thought that DD was being naughty, and was being allowed to get away with it. Once he knew that her behaviour couldn't be helped he was far more accepting of it.

I'd add that it takes several sets of explanations over the years to the siblings, as their understanding changes as they develop, and if you don't re-explain they fill in the gaps themselves:

Me to ds "So why doesn't dd2 walk?"

Ds (pauses, thinks, lightbulb goes off) "Because she's only got slippers!"

I've just read this thread.

DD is 12 and NT. DS (aka Nemo) will be 2 in May with 'Complex Needs', including a heart condition, GGD, cleft palate and is tube fed.

We had no idea before he was born of his complications.

Our lives have changed dramatically since our beautiful boy arrived, but I/we wouldn't begrudge him a second of my/our time.

However, there are times when I feel incredibly guilty that sometimes DD has to take a 'back seat', especially during hospital admissions.

DH owns his own company and works full-time. I'm Nemo's full time carer, and the one who goes all over the country to stay with him in hospital.

Whenever I can, I make a fuss of DD, do her nails, hair, go shopping, watch a movie together, eat chocolate! DH also spends time with her.

We don't holiday anymore. Or go out very often at all but we try to do as much as we can, as a family, and include DD.

Just want to say thank you to everyone who posted on this thread, i've just come back to it.

Coffee pot - point taken about the one on one time being something simple, had big plans for a trip to the cinema but really one of the biggest things she enjoys and misses is being able to play board games so we're having a games day saturday instead!

We have my brothers different and kinda used it to explain to her, she very proudly announces my brothers autistic (not sure what she actually thinks she means by this yet ) I think after a weekend of "special" entry passes and "special" areas because James has "special" needs she just needs to feel a bit special herself ]

Big thing is knowing it's not just us trying to work it out as a family

xx

Mouseface - I'm wondering about the holiday thing. DS biggest issues are with personal space - we had a proper rainman style thats not my bed the first evening

Do you think he'd do that if you took his pillow, quilt etc?

Interesting thread - it's something we are struggling with more and more. DD is 6 and has ASD. Not severe in terms of behaviour, but not that high functioning in terms of her language (although she's pretty bright, but language comprehension and expression very behind for her age). DS is 3.5 and we're pretty sure he's NT, but I have real concerns about his behaviour: he is constantly pushing and shoving other children. He doesn't open conversation with them, just goes straight up and pushes them over. I know it's because he wants to play with them, and I know it's learned behaviour from his sister (their byplay is loving but VERY physical - clambering all over one another) but I don't know best how to help him learn to interact correctly.

yep next time we will be packing his own duvet cover and pillow case

(although I think it was the fact it was an eiderdown with no cover at all that really got to him.... and bunk beds... and I wouldn't let him sleep on the top of the "pirate ship)

Just come across this thread as have had no computer or two weeks.

It is really hard to give extra time to any NT DC, especially if your DC with SN takes up most of your waking moment.

DS1 gets to stop up an hour later during the week so we can have some time with him, and DH takes him out once a onth for a lads day out, they usually go to the pictures and a Chinese buffet. DS3 gets attention when DS2 is at school as he is only a toddler, but when he is older he will probably get the same as DS1.

We are also lucky that we get 6 hours respite a week during the holidays, so we do something on that day as well. Something that DS2 would definitely not let us do if he were around.