How honest are you with your children about their SN?

[TalesOfTheUnexpected]

(ok, I admit, it's a bit of a thread about a thread)

I have 2 SN children and one NT. My boys have GDD, poss autism, and some other issues... but the main theing that one of them is now realising his eyesight is bad. He has ocular albinism and nystagmus (as does his brother). Basically, his eyes wobble as he doesn't have enough pigment in his eyes to see, and it can't be corrected by glasses or contact lenses.

Both my boys have this condition but one is more aware of it than the other. He recently said "when I'm bigger, my eyes will be better" and I had to explain as gently as possible that this won't be the case.

Now I don't know if I've done the right thing. We went to the hairdresser last week and she asked him to look straight ahead in the mirror and he said "I can't see, I've got wobbly eyes" and he cried.

I suppose this is a bit of a self-indulgent moan really. I just want to strike the right balance between letting my sons know they have differences to others without really putting them down iyswim?

my eldest knows she has autism, and thats why she gets so worried, why she struggles with certain things. She also knows her sister has autism too, however, I think my youngest has no clue at all.
I think you need to be honest but let them know they may have limitations but that doesnt mean a thing, it just means they will have to work harder.
I truely believe my girls can do anything they want in life, they just might take a different route to NT children.

Well I made a mistake when ds1 was five a and trying to communicate something to me which I couldn't understand. I said (not thinking in a million years that he would understand) 'Oh ds1 it would be so much easier if you could talk' - he howled and howled for hours.

So. Since then (he's 12 now) I have talked to him a bit about autism. He knows he is autistic, and I suspect he knows he is severely autistic. He is very interested in seeing other severely autistic children (on TV, on YouTube, in RL). If I tell him someone is autistic he comes to see, then taps himself and says his version of his name. And I have to say 'Yes ds1 is autistic as well'.

The other boys just grew up knowing that he's autistic - it was probably one of their first words

I have always let my son know about his Autism but I have always let him know it isnt an excuse not to do things. I tell him he just has to work harder to be able to do the things others can.

Thanks for your replies. Nice to know I'm not entirely on my own.

lisad I applaud you for giving your children such a positive outlook. However, I know that it doesn't matter how much I do or give to my sons, their eyesight is beyond my help. They will never be able to drive. One of them wants to be a fireman!

saintlyjimjams thank you also for your reply. I hope one day to get one of my sons (the other one that I didn't talk about as much in my opening post) to understand what autism is.

I am by no means the "worst done by" here. I just needed to vent and get a bit of feedback and you've helped. Thank you.

I've talked to my eldest about it because he was asking questions.

My youngest shows no signs of being at all aware about anything to do with it he just is. iyswim.

I think that you just watch for the signs that they are at the stage where they will understand, even in the most simple terms.

Of course, my eldest took full advantage and started with the "I can't do X cos I'm autistic." Little bugger.

He's also got Erbs Palsy and I recently told him exactly how it had happened because he was asking why his arm is how it is. His reply? It was a shame that the doctor hadn't hurt his brother too cos then he'd have got "a million" (he saw some Trust documents that talked about his settlement from the hospital)

does your ds get the opportunity to mix with others with a vi? The sensory impairment service here are very hot on providing the hi and vi dcs with older role models and finding them a peer group when possible, it seems to have a really good affect on the dcs to be around others with the same issues.

BH here (have name changed)

DS doesn't know and I have no idea how to explain it to him or when to do it.

I think it will be when he's older, perhaps when he begins to notice things himself.

because my DS didn't meet the criteria for the ASD DX, I am limited in what I can tell him (he wouldn't have the understanding to deal with having "language delay with subtle social communication difficulties" - well let's face it, it's hard enough for us adults to deal with such a wishy washy DX!). I have always been honest with him about him needing help to learn to speak/with language/having speech therapy, at the moment he doesn't really see himself as different to his peers, so I'm not going to burst his bubble till he's ready.

tales I really don't know how self aware Ds1 is. He has severe learning disabilities and is non-verbal, so I didn't know he knew he was autistic iywim. Once I realised that he did, and that he knew he couldn't talk (it hadn't occurred to me that he realised that) I just talked a bit about it (mainly who else is tbh). I don't know how much he understands. It isn't treated as something negative in our house, just as a fact iyswim and often as an explanation. I'm not sure how aware he is of things he can't do - that's an interesting one.

I wanted to say my DD2 has nystagmus, her eyes wobble alot, when she is tired, or even just concentrating, she knows they do, we call them dancing eyes. She has another eye condition sawell which means she is registerd blind.
We talk about it all the time, but she hasn't grasped completly how it will affect her, she is 4.
She wants to drive a car, fly a plane, all the stuff that she wont be able to do because of her eyes, and ofcourse it limits what she can do and how she progresses especiaaly now she is at school.
It's heartbreaking.

I don't have experience to help, as my ds is not old enough. Just wanted to say, didnt think it sounded like a self indulgent moan but an important question. I've often wondered how I will explain my ds visual issues to him and what's the best way to do it.

I haven't approached the subject with ds, but we do sometimes talke about what he finds difficult and what he is good at.

But this is because he has started to realise himself and says things like 'I'm not clever at that', or just simply 'I'm not clever'.

Also, his little sister has just turned 3 and has for the past couple of months been asking lots of questions about ds. She picks up that he needs additional help and has a sense of justice that means she understands that we make allowances for him that we do not make for her. I have felt a responsibility to share with her too that ds finds things difficult that she does not and that is why he doesn't get into trouble like she does etc etc.

She is whatever the opposite of autistic is, and does seem to understand thankfully, but I wish I didn't have to tell her yet. If I don't though her self -esteem is at risk.

ds2 does know he has autism, but i dont think he really gets it IYKWIM.
ds1 was trying to explain something to him recently & he said "oh its because you have autism, ds1 looked blank & so ds2 said you know like x she has autism aswell "(nameing a friends dd with asd). DS1 just cried & cried eventually he said I dont like her & i dont want to have white hair (she's very blonde).
I think maybe he's not ready yet.

DS2 wants to be a soldier as he wants to fight in the second world war, we've told him he's missed it but he's adamant!
DS1 (the NT one) wants to play for England, we haven't told him he's rubbish at football.

All kids dream, no matter how unrealistic - i guess the time will come when we'll have to brea it to them gently.

oh i got my ds1's & ds2's all mixed up in the last post, but you get the jist!

DD1 is a bit hybrid. She has enough physical disability that it is obvious, and is registered with the SS as 'physically disabled', but she is by far one of the most able children in her school, physically.

She intellectually disabled, but has moments of real clarity, such as saying 'that's language, isn't it?' when I was trying to explain that it isn't rude for a non-verbal child to blow raspberries, because that is their way of speaking (not necessarily true for all non-verbal children, I know, but for this particular child, it was ).

She has a severe S& L delay (5.9, understanding variable, probably speech of a 3 year old technically, but quite hard to understand, even for family).

The list goes on. She has constitutional tremours, ataxic gait, fine motor, gross motor, etc. etc.

The real thing, for us, is that because DD2 is only 20 months younger, she has caught up, and overtaken DD1. She wanted to know why. So did DD1, in her own way.

You can't exactly hide that a 5 year old can't jump, but her 2 year old sister (DD3) can.

So, I explain, that DD1 has a 'poorly brain'. That's why she takes medicine. That's why she can't jump, etc.

It does backfire. DD2 started school this week, and I heard her gently patronising DD1 with 'Sweeeetheart, you can't go to xxxx school, because you need extra help, so you must go to yyyy schoool. I don't neeeeeed extra help, so I go to xxxx schoool. Alright sweeeethearttttt?'

I cringed, but it went straight over DD1's head, and to be honest, it is just a sign that DD2 is trying to process the difference.

DD1 desperately wants to be a Farmer. There is no way she will be strong enough in any sense. So I gently encourage her that I think her hands might not get strong enough to help the big animals, but that she could be a small animal farmer, and help to feed the big animals. That's good enough for her, she is happy with the idea of being able to scoop up chicken poo

I havent told ds that he has autism, SPD, hypermobility and ocolomotor defiencies etc, etc i dont know if i ever will, to me the names are not important, im not sure if this would be helpful to ds or not, but at the moment he is only 7.

how old are your ds's, tales? dd2 is just about 8, and used to say similar things about what she wanted to be when she grew up at around 5ish. at the time we dealt with it by saying 'well, we'll have to see' type of thing 'you know you go and see x because you are (insert particular issue under discussion)' etc etc. these days we are brutally honest.

dd2 has cp. and she knows that we will move heaven and earth to enable her to do whatever in the world it is possible for her to do (in the winter she takes ski lessons - this summer she went hiking - next summer she wants to go climbing - she wanted to learn to skateboard ffs). currently under deliberation is ice-skating - there are some fabulous frames that can enable some people to skate, and of course you can get on the rink in a wheelchair, but the jury is still out for dd2.

she does know, however, that she can't join the military like mummy or daddy because of her disability. and we are always realistic about anything else she decides she wants to do. but that doesn't preclude us trying to work out if it ever will be possible on the quiet.

with the eyes thing - i used to catch dd2 poking herself in the eyes in front of the mirror to try and turn them the right way. she has had surgery now, with some good cosmetic results, but i can understand how it makes you feel. dd2 used to say she wouldn't fall when she was bigger. and she wouldn't be wobbly. and she would speak clearly. we haven't had the brain damage discussion properly, but she knows that when she was born she was very poorly which hurt a bit of her brain that won't get better. we've got a copy of her mri somewhere, so we can show her when she asks.

psychs usually say anywhere from 8ish is when kids struggle with coming to terms with reality of disability. same with siblings of kids with disabilities. dd2 had a brief wobble around 6 with a 'why me' phase, but i don't think we've hit the full force of the impact yet.

I have told DS (6) that he has dyspraxia as I had to explain why he had to go for OT. He was refusing to go without understanding the reason why he had to leave school and noone else did. We have also told him that he is being assessed for anything else that makes things difficult for him.

If he gets an AS dx as we suspect, we will tell him as he will find comfort in his "differences" at school being because of something IYSWIM. However intellectually he is able to process these conversations with help of a book and we have already had conversations about why my friends DS has a blue badge (ASD and a runner).

Mine knows, he's got Asperger's and how that impacts on him, but he's on the HF side and attends MS college, so it's nowhere near as challenging a decision as some of those on this thread

PJ
'I remember a psychologist saying once to me that the dc that knew of their dx often used this knowledge to have more behaviours?'

I tend to respond to justifications along those lines from my teenager with 'It's not the way your brain is wired, it's because you are being a PITA' when he is being a PITA. Like with all parenting, sometimes the child tries to pull a fast one.

But TalesOfTheUnexpected, what a useful and interesting thread to have started. And how heartbreaking to think of some of the issues that others are facing here, for which the solutions are few.

My DS has very mild nystagmus. It's intermittent rather than constant.

I never talked to him about it because it was just not something I thought about much.

But because I didn't talk to him about it he never talked to me about it.

So it wasn't until he was 9 that I found out he couldn't see the board unless he sat directly in front of it.

And it wasn't until he was 10 I found out he intermittently lost his vision. I asked him what happens when his eyes wobbled and he said 'it's like a screen saver comes down in front of my eyes' :(

now I can make sure he always sits in the centre of the room, and that's helped a lot.

So if you don't talk to your kid about their SN, it makes it harder for them to talk to you.

Morning all

Goodness me, I didn't expect so many replies. Sorry I can't address you all individually (Sunday mornings with 3 kids = hectic!). But it's really good to hear other people's experiences and points of view.

To answer a couple of questions, my sons are nearly 7. They have other difficulties I've posted about before so they are in a SN school and have input from the VI team that visit there.

I try not to let them get away with stuff because of their SN, and I also try to not make them feel different. I'm just trying to strike the balance between honesty, not pretending nothing is wrong, but also not pigeon-holing them - "you'll never be able to that because you have X".

Anyway, thanks again. (The kids are destroying the place.....gotta go)

Hi, this has been something I have thought about since DD was born but is only just starting to be an issue (5yo). I worry that if I don't explain her condition somehow then she may think she has to have painful tests etc due to something she has done wrong. I am probably being over dramatic but it worries me. So when I am doing blood spots or she has to have a test I have been saying things like you know you have to take medicine? Its because you have (name of condition) and that means the doctors need to make sure you stay ok. I'd like to give her more contact with other kids who have similar issu as I think it would be helpful to say like x does. Or a book about hospital for a child who isn't going in just to have tonsils out then going home cured bt I hav never yet found one!

DDs limited speech and understanding means I am never sure what she's taken in but recently her little friend said why can't she talk properly? And she looked a bit worried but didn't react so I hope she didn't fully understand but don't know. When my friends dd said something similar she explained it by saying well she's better at riding a bike than you everyone has things they are good at and things they find hard. I thought that was a good way of explaining it so am going to try and say similar and keep reminding her of stuff she can do.

I think my 2 know. it's hard to tell.

they know they go to different schools, and that they will not ever go to the same one.

dd2 knows that dd1 has different goals, and different targets to work for (both at school and at home)

they both hear the words "autistic" and "autism", and dd2 has occasionally asked why" about eg the differentiated rules, and we have explained that dd1 needs more help, or more time, or whatever has been "wrong" in dd2's eyes.

I had a similar moment to saintlyjimjams when dd1 was younger - she was trying to tell me something, and was frustrated, and i was frustrated because usually I was pretty good at interpreting her speech (as an aside, I watched some videos the other day of her as a toddler - my god, I have no idea how I ever understood her! but I did, and actually thought her speech was pretty clear - I used ot get really impatient with professionals who couldn't understand her ), and I said to her "I wish I could understand you", and she broke down and sobbed. real, true, proper sobbing - she was heartbroken. it highlighted how much she understood, both of language, and of the situation - she really seemed to know that she would always have trouble communicating.

dd2 overtook dd1 a long time ago, but since she has had difficulties of her own (a very fine line between spectrum and NT for dd2) then we have been able to get along on the 'working on different goals' thing. as dd2 is improving, and more NT, it will be a topic that gets discussed more and more, I think.

My dcs both have EhlersDanlos/hypermobility, so a physical disability that may or may not get better (some people end up leading a perfectly ordinary life, others don't). I try to be as honest as I can, which in our case is going to be "we don't know how your condition will affect you when you get older, some people get better and some don't".

I have also pointed out to ds that most NT boys don't get to be professional footballers either.

We have had difficulties with some health professionals who have wanted to deny them aids they need (writing support at school, use of wheelchair in emergencies) with the motivation that "it will make them think of themselves as disabled". This attitude makes very because

a) it teaches them that disability is something shameful that you have to cover up-an attitude that could wreck their lives if they do end up disabled

b) if they don't accept help they will miss out on things they could be enjoying- and that is what I call being disabled.

Ds is the kind of person who bottles up- it took him a year to talk to me about how he felt about the onset of his symptoms (he was devastated). We have since got him some counselling and it has really really helped, having somebody to talk to about how he feels. Dd's light bulb moment was spending a few weeks in a rehabilitation clinic and meeting other youngsters with various disabilities and medical conditions, just seeing that she wasn't alone.