Having a special needs sibling

[Jimjams]

Here we are strangerthanfiction I'm very interested in your experience as the effect on ds2 is something I worry about.

Balancing the 2 is very difficult at times, they have very different needs. My friend with an autistic dd has and NT about the same age as ds2- we meet up a lot and in the future we hope that they'll be able to talk to each other about the awful things to do with having an autistic sibling.

DS1 is very passive though. Far too passive. He tends to ignore ds2 rather than be mean to him. DS2 adores ds1 and is constantly in his face- so he does cope very well (ds1 I mean).

For ds2 I think the hardest things really are when we are out and about. We can't have normal family days out (as I'm sure you will know). And I think this is something about autism that makes it a particularly difficult condition to live with. So much of family life has to be on the autistic child's terms.

I used to worry a lot about that until a friend pointed out that she can't do much as a family as her eldest dd is 12 years older than her youngest 2. And they therefore have different needs. That made me feel better.

I do try to do things with ds2 by himself. For example we couldn't take ds1 to the cinema but as ds1 will be in school full time from September I'll take ds2 then. Also mum has sad she'll have ds for the day sometimes so we can take ds2 to places we couldn't go with ds1.

It must have been awful for your mother being at the end of the refrgerator mother period. I guess it was before any of the sensory stuff was known either- which would have made it a truly baffling condition. I do find it easier to cope with when I understand why ds1 is behaving the way he is.

What did you find hardest about having an autistic sibling- was it the day to day life with one, or the way in which it meant you were limited as a family? Or something else? It must have been hard not knowing anyone else in the same situation........

Hi Jimjams, my brother is autistic as I mentioned already on the 'biting' thread. My mum had us very close together, she got pregnant with me when my brother was only 4 months old so there's only 11 months age gap between us. Right from when he was born my brother had problems, unlike your Ds1 he wasn't passive, at least not to begin with. He had some terrible food problems and would only sleep for very short periods of time at night and in the day and he never stopped moving. He was walking at 8 months, running at 10 months and they bought him a rocking chair as that was the only way he'd sit down if he was rocking. Those are the things I remember from very early on and also that he had severe bed-wetting problems which meant he was in a nappy at night until he was over 6. As for me, my mum was terrified about having another child as she assumed all kids would be like my brother and how would she cope with 2 like that. But I was the direct opposite, very quiet and docile, didn't walk til I was 2.5, ate everything put in front of me and (she says) never had a tantrum. She now thinks the reason I was so abnormally 'good' was because I was constantly pushed out of the way by his demands etc., but I think I could have gone the other way and become abnormally 'bad' in order to score some attention. So who knows?

Later on I remember going through all kinds of phases of loving and loathing my brother. The latter emotion being one I'm not proud of. I felt very protective of him as I knew all the ways he suffered in situations which would be everyday to other people. It made me very sensitive which I think has been a good thing. But it also made me find it very hard to express any needs / problems I had as they always seemed trivial in comparison to his. There were awful problems at school as he clearly couldn't cope and that rebounded onto me. When he was taken out of school altogether that was easier though not for my mum of course.

I don't think he was properly diagnosed until he was 11 or 12 and I don't remember much about that though my mum says it was a relief as she knew he wasn't 'right.' There was no real support networks for her so she ended up mostly dealing with him herself though I remember her driving to a specialist hospital / centre with us a few times where she got some advice.

The time I remember the most is in our teens when my brother became more and more 'introverted' for want of a better word. He'd go for very long periods of time without speaking even though he'd previously had no real speech problems and he'd just turn round and round in circles and would scream in a very high-pitched way if anyone came near him. He went in and out of hospital a bit around then as my mum wasn't coping and my dad was literally going to pieces. I have to say, and again feel awful for saying it, but it was a huge relief when he went into hospital for a while. The whole house felt better, we could sit down and eat, watch t.v., sleep all night. Very small things but very valuable.

Living with my brother did affect me profoundly. I should try to sum up the good and the bad things because there are definitely both. The good things are that it made me caring and sensitive to other people's pain and behaviours I don't understand / it made me incredibly close to my mother and my father before he died because we had to work together to help my brother a lot / it made me never take for granted how lucky I am to be 'normal' / it would eventually lead me into a career that perhaps I might not have done and now love. There are more I'm sure. The bad things are that I find it very hard to ask for and accept help from other people, I can make myself a bit of a martyr to other people's needs iyswim / School was hopeless for me, I missed a lot and was forever 'stigmatised' by my brother's problems / I spent a lot of my teens traumatised by childhood and unable to decide what to do, I eventually did A levels at 26 followed by BA, MA, PhD / Gosh, the most obvious of all is that I have had to watch my brother suffer so much, still now, and often be unable to help him.

This has turned, rather embarrassingly into a mini-biography which I don't expect anyone to sit through! It's actually very good to talk about this. I never do apart from in terms of practicalities with my mum.

I would love to hear other people's stories.

One other thing I should add is how it's affected me as a mother. For one I did'nt want to have a child for fear of autism passing along genetically. Then when I was pregnant I began to see it as an inevitablity which was a really weird feeling. I did endless research into autism and prepared myself massively. When dd was born I looked obsessively for every sign. So far at 21 months almost she doesn't show any but my mind is never completely at rest, this makes dp very frustrated with me. Again it's not something I'm proud of admitting.

I can't speak from personal experience but a cousin of mine had profound sn. He was the youngest of three, and the only, and much wanted and loved boy (girls were not valued much in my family, but that is a whole different thread).

He was profoundly disabled, at one point was having up to 20 fits a day, could walk after a fashion, but was unable to speak or communicate in any way and was doubly incontinent. He couldn't feed or cloth himself. He could show when he was in pain, but that was the limit to his communication of needs.

Partly as a result of the family values, and partly the time, the 60s, the whole family revolved round him, and I think that it is fair to say that the older girls childhood ended when his disability became apparant, and his needs became more acute.

The parents eventualy split......all terribly sad.

Things have changed a lot STF. My son is only just out of nappies, but disposables made that not really a major problem iyswim. Actually I've been moaning today that he hasn't progressed at all but I guess toilet training is a big one.

Food is dreadful in this house as well- but again the internet and lots of books on the subject mean that I know how common it is andits something I no longer get frustrated about. Also there are now specialist nutritionists etc out there (we see one) and so it makes things a bit easier.

I think you fears about having an autistic child are completely understandable. I am terrified that number 3 will have some form of significant dsability- because I'm not sure how I would cope with 2 (and I think how difficult it would make life for ds2). When ds2 was born I remember looking at him and thinking "you're autistic you're autistic". Didn't help that he was a section at 38 weeks and behaved very like a prem baby for the first couple of weeks, then had an infection which wasn't picked up for a further 4 weeks. By the time he was 12 months though I knew he was fine (well I was 99% certain- now I "know"- so all that's left to worry about is regression). I do dread this third baby' first year though as I know I'll be watching and waiting again- and that is hard.

We worry about the stigma you talk of attaching itself to ds2- may send them to different schools, not sure (may be out of our hands anyway). Although there are 2 other autistic boys in ds1's mainstream school so maybe it won't be that unusual to be a sibling iyswim.

I hope that ds1 will gain some benefits from having an autistic brother- a sense of what's important in life, patience with difference, tolerance. He doesn't bat an eyelid when ds1 goes into one at the moment I have to say. I guess he's used to it. (He has tantrums though ) I do hope for ds2's sake that our next child is "normal" - I think having an NT sibling would make life easier for him (and for ds1 as well).

Your post has given me a lot to ponder on. BTW when I did my PhD I used to say I had chosen the wrong subject and should have done one on autism as that's waht I was interested in. I guess we should be careful when we wish for things.......

I'm not sure what to say in relation to your post hmb- it's so sad......

Jimjams, funnily enough my PhD did include a lot of stuff on autism and in my current job, although I'm now just 2 days a week, one of my areas is autism. One of the things I've realised is just how different autistic children / people are to one another. So whereas with my brother I got stigmatised at school, your Ds2 may not have that depending on how your Ds1 behaves. My brother was really very very different and never had a friend. He was segregated at lunchtimes as he'd often violently throw up his lunch. He'd also sometimes just wet himself on the classroom chair, once famously during a 'test' and no-one was allowed to speak so no-one told the teacher, neither did he and they didn't realise til quite some time later. There were lots of things about him in particular that made other kids both fear him and feel, I guess, repulsed by him. Some of these things turned into phobias for me, that's a direct effect I think I haven't mentioned. I had a terrible fear of being sick in front of anyone and used to eat only on my own in my room. I never ate at school but only when I got home. My poor mum, eh? Two skinny kids. That phobia went on til I left school and then returned a few times at stressful times of my life.

I've been looking at photos of him this last day or so. He's incredibly tall (6.4) and skinny (10 stone). When he was in his early teens he always just seemed to be standing on his own like a fragile tree staring at something in the distance as though in a constant dreamworld. He still breaks my heart, I wish things had been different for him when growing up, maybe he would have had a better life than he did. And in a way I think I thought when pregnant that if I had had an autistic child I would have done everything I could to make their life different to how my brother's was.

As it is with a so-far-so-good non-autistic dd I feel I can never stop counting my blessings. That at some point there's going to be a 'pay-off' of some kind because I suppose deep down I feel that I should have / could have helped my brother more at certain times. I have a lot of guilt about my feelings towards him when I was younger, so does my mother. It's hard to know how to make it up to him as he won't accept affection of any kind and barely recognises who I am (or makes out he doesn't iyswim).

strangerthanfiction - your post was making me so sad... mostly because of how your experience affected you... and I just had to respond.

I have an autistic DD, age 4. We also have a NT DD, age 9 and they are like night and day - completely different kids. Right now we are trying to get all the help we can for her - don't know if she is ever going to talk or communicate with dialogue but we'll continue to do the best for her with what resources are available to us - and that's all we can do.

Your experiences were back when autism was so misunderstood and resources were not available like they are today. Sure some of us have to fight for what we get to help our SN kids but at least there's something out there now and there is more support with other families in the same situation.

I know its hard not to look back and wish things could have been different, or that maybe you'd done things differently. You and your parents did the best you could with what you knew and what you had available. And maybe that's all you could do - you and your parents needed time out too.

Continue to count the blessings and if your brother doesn't like hugs or affection maybe just find him some of the things he does enjoy - in his own way he'll be happy.

I know this doesn't really say much but just wanted to let you know I am thinking of you and sorry for the pain you are obviously feeling.

Do you understand your brother more now that you've studied autism STF? For me a turning point in understanding ds1's beahviour was finding out about all the sensory stuff. It freaks me out to be honest when I think how the world must appear to him. Guilt goes with autism I think.

Thanks IG, it's opened a bit of a can of worms in my mind actually thinking / writing about it all here. But I guess it's time to do some long-avoided thinking.

Jimjams, yes and no. In a way when I was younger and didn't know anything I still thought of my brother as 'normal' but with some extremely weird quirks. Since I've known he was 'unwell' (sorry for these very clumsy words) I feel I haven't treated him in such an intuitive way as I did. It's helped enormously in understanding what sets him off and it would definitely have been hugely helpful had we known more when he and I were younger, for my parents too.

I think as a now grown-up sibling, if I had any advice to pass onto parents with NT and special needs kids it would be to avoid as much as possible the special needs child's needs dominating life too much. Of course they will to a large extent but I think it's very easy for the needs of the NT child to get over-looked or to become used to being someone who 'looks after' their sibling so turns inwards with their own problems. I'm saying that but in lots of ways I can't fault my parents, I think they coped pretty well in general and were very loving. And I think if this were happening now with all the other avenues of information and support my experience would be very different.

That's the main problem with family days out. If ds1 won't stay then we can't. No choice in the matter. It's that that I think is hard for ds2 and often I do find myself saying to him in that situation - "it really sucks to be you sometimes". The only way I can think of geting round it is to take him out separately so he has his own time when he can do things on his terms.

SO far our really successful days out involve train rides. A set beginning, a set end and both boys love trains.

Yes, days out can be awful I'm sure. We also found going away for holidays was quite hard. We never went abroad for instance. Weirdly my brother LOVED anything that had fairground rides which is a weird thing about autism I've found - on one hand there's a fear of stimulation (with my brother especially in the form of conversations) but then things that really over-excited his senses he'd be calmer than anyone else. I was too scared to go on anything!

Funnily enough this is something I was talking about today with 2 of my friends with SN kids. One of them was saying that her 5 yr old ds told her he wished he had cerebral palsy so that he could get the same attention as his brother (who does) and the other said her dd said the same - only she said she wished she had 'terrible palsy' like her brothers .

I don't know what you do about it.... have to say it is one of the reasons I am reluctant to have another baby (that and the fear that they too will have SN). But I do think that at the end of the day, and I hope you feel this SFT, that the sibling of a child with SN will also learn a huge amount from having that sibling and ultimately gain a great deal.

I just wanted to say STF that your story made me feel very sad and I hope that you find a way to work through your feelings about your brother .

Thanks heartinthecountry. Yes, I did gain a lot too, I hope that comes across. But it took a while. Actually as a small child I just took things for granted, I think it was as a teenager and then in my early 20's when I got more introspective that I started to feel the most 'traumatised' by it. Now in my late 30's with a child of my own it all seems different again. But I do owe my brother a lot, he taught me all kinds of things about different human experiences etc. and also as I said earlier it was because of him that I eventually went on to study so much and have a possibly different life than I might have had without him. And he helped me to appreciate life in all the small ways as someone with SN can't take the things for granted that so many of us can.

I do think though that it IS hard for kids with a SN sibling to get as much attention as they need. I don't think I every wished I was autistic so I could be like my brother. I think I wished he wasn't autistic so he could be like me! .

STF - I totally understand what you mean about 'not letting the special needs child's needs dominate everything'. We try to make a conscious effort to take our NT DD1 out and give her opportunities that are sometimes difficult with our autistic dd2. But at the same time we also try to do anything to give DD2 opportunities to see and try new things too. Luckily DD2 responds fairly well to her dad and as long as he's along on the trip most situations we can overcome.

DD2 has never expressed a wish to be autistic in order to gain more attention. I think having a 5 yr age gap the older one was just that little bit more mature and able to handle the differences. It is only just in the last yr or so the kids have really started to get along and play together (they are 9 and 4). DD2 will ride on DD1's back and sometimes they'll draw together and it is just so great to see them doing something together and for DD1 to be gaining so much more understanding of people with SN.

We can learn so much from our experiences and to some extent I appreciate that DD1 may have more compassion and understanding for people with SN because of her little sister. It's going to be a hard road but we'll do the best we can for both of them.

Life is all such a learning experience and to look at all things as an opportunity to grow is such a blessing.

Doesn't make it much easier but...you know.

ps heartinthecountry - I have still not been able to contact you via another talker - maybe you could try me?

Hi IG, yes there is a lot to learn. I guess in a way being the older child with a SN younger child is a better situation. Not that one has a choice which child one has first! Especially as your dd1 had a chance to be the only one for 5 years. Or maybe that's also hard in that she has to get used to not being the only one but having a new sibling that also needs extra attention.

Looking at photos of my brother and I when very little we don't look a lot different to each other, I mean you'd never 'guess' anything was wrong. And I do remember playing with my brother, though this was always quite limited in terms of what he liked / found too much. We did have fun though. I remember singing together a lot (he had a very good 'rote' memory). Very loudly. Especially on long car journeys!

do you find that having an older child with autism means as well as the second child getting pushed out that they even copy some of the behaviour to get the attention that their older siblings gets and how do you explain to a three year old that they cant do that type of behaviour yet their brother is allowed . i wonder what age they realise they have a diferent older sibling?

ds2 (age 2) copies ds1 but mainly its funny (he squints up his face when we tell ds1 not to do "funny eyes", and he sniffs book sometimes for example.

He does hit his head with his hand when cross but not hard in the way that ds1 does so I ignore it.

The only time I'veh had to be mean so far is when he turned up at my side with a perfect "I want chocolate" PECS sentence strip. I absolutely cannot have him walking off with ds1's PECS cards so first I told him off, then I explained to him that he can talk but ds1 can't so the cards need to be there for ds1. He seemed to semi understand.