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Original poster

Do you always explain your DCs disability?

38 replies

Shells · 25/03/2008 01:12

I'm interested to know what other parents do about this - especially those of you with kids with 'invisible' disabilities. DS2 has a significant speech and language delay. But he looks perfectly NT (if there is such a thing) and is constantly being spoken to as if he can understand everything a NT 4 year old could. So for example, in the supermarket yesterday he was lying on the floor in the aisle, being annoying. A staff member came up and jokingly said to him 'I'll keep you here overnight if you don't get up' . Then she repeated it as DS2 didn't respond as way too complicated for his language skills. I really couldn't be bothered to explain to her what the problem was. I guess I was partly dreading the well meaning/inappropriate response. But should I have?
I always tell people straight away that he has SN if they are going to spend time with him. But I'm interested in what you all do for casual encounters.

OP posts:
TinySocks · 25/03/2008 06:42

I can totally relate to your experience at the supermarket.
DS has a developmental delay affecting all areas (speech is very delayed), but because he is 3 (still a bit young) I think most people still don't notice his differences unless I spend considerable time with them (although differences are starting to show a bit more now).
Initially DH and I decided that we wouldn't tell everyone about his problems, but to be honest I find myself telling people more and more. I know it sounds silly, but I feel I need to explain to people why he cannot reply to a "Good Morning" or why I am not even attempting to teach him "please" and "thank you" yet (specially when someone offers him a sweet!), or why when I take him to the park or an indoor playground I need to be with him all the time helping him get up and down things, or why when I take him to ANY place rather than drinking coffee and eating cake like the other mums I have to run around with him, following him everywhere.

Original poster
Shells · 25/03/2008 07:42

Its a tricky one isn't it. Because I veer between thinking its better just to get it out in the open, and thinking I don't want people to jump to conclusions about him/patronise us etc. Most common response I find is that people don't know what to say and feel awkward and then I end up reassuring them. All the wrong way round. Or the rather unhelpful 'oh, he'll catch up soon'. And then I just get annoyed.

OP posts:
sphil · 25/03/2008 07:59

Similar views really. When DS2 was 3, I found I didn't have to explain much at all, as his behaviour wasn't so different from other children. Now that he's 5, I find myself explaining all the time, as the differences have become much more obvious as his peers have matured. I sometimes think now I explain too much though - I leap in and say 'he's autistic' BEFORE anyone has noticed! DS1 explains it to people all the time though - even to two year olds who just look at him blankly

yurt1 · 25/03/2008 08:25

ds1 is severely autistic. I tend to say 'he can't talk' (he's almost 9 now). Can't be bothered to get into the whole autism thing.

TotalChaos · 25/03/2008 08:51

If it's completely random encounters, I usually try and pass it off as "he's shy". Otherwise I would tend to go for "language problems" - unless very close friends/relatives none of their business as to potential ASD.

FioFio · 25/03/2008 09:48

This reply has been deleted

Message withdrawn

tibni · 25/03/2008 15:50

When ds was younger I tended to explain about his ASD. Now (4 yrs on from dx) I find that I tend to be focused and tuned into ds needs and don't notice the "looks" so much. Yesterday we went to McDonalds and I was so proud of my ds - yes he did cover his ears at times but he wasn't stressed and he demolished his dinner!

I explain now when I feel the need rather than gushing to everybody.

crimplene · 25/03/2008 19:01

I usually smile and go 'Mmmm, yes' or something now even as they tell me I should take DS's sunglasses off or whatever. Increasingly, I pretend they've just paid DS a compliment, whatever they've actually said. Educating the world was taking up too much energy. Sometimes, even with my best explanation people would say something completely fatuous in response and I'd realise that they hadn't 'got' any of it. I only explain when I'm in the mood to now.

Original poster
Shells · 25/03/2008 19:19

Its really good to hear all these responses. Makes me feel better that I quite often don't want to explain DS to other people.

OP posts:
sphil · 25/03/2008 19:59

I think I feel I have to explain when people address a direct question to DS2 - which is quite a lot as he's very smiley so old ladies tend to chat to him! I think I might just say 'he has language problems' next time - but then you get the whole 'my cousin's brother didn't talk until he was 52' guff. Oh and I feel I have to explain when he runs up to strangers in the park, wraps his arms round their legs and shouts 'jumps!' .

hecate · 25/03/2008 20:06

I explain if things are going wrong - ie someone is talking to them and getting no response and they just look at me as if to say "Your child is an ignorant brat, isn't he?" I can't bear to think that anyone has a negative opinion of my kids so I always put them straight. I don't go into details, just say they've got autism. Most people have heard of it.

Although if one more person replies with anything to do with Rainman, or tells me how good 'they' are all supposed to be at maths or drawing or something because they saw a programme about a boy with it who knew pie to a million points or could draw the houses of parlament from the memory of a postcard he saw when he was 8 months old, I'm going to shoot them!

yurt1 · 25/03/2008 20:39

Oh yes sphil we have the same problem. People approach ds1 and ask him questions, which I answer. Aged 9 that's odd. I find a 'he can't talk' means I don't have to get into blasted rainman territory or explain that he doesn't have a special skill and may be a maths genius but actually we'd never know

mymatemax · 25/03/2008 20:46

I didn't explain but its gone past the stage now where it can be thought of as toddler naughtiness.
Because ds2 has physical disabilities as well (albeit mild)it is quite obvious now that he is disabled so I find I don't have to say much, we just get given a wide berth

hecate · 25/03/2008 21:02

Do any of you ever want to reply "he can fly" or "he can leap tall buildings in a single bound" when asked about their special abilities?

No?

Just me then.

staryeyed · 25/03/2008 21:58

My Ds is 2.11 but looks bigger than he is and he is just starting to get all the funny looks and questions. I lady in a shop was trying to talk to him and I just explained that he has autism and she just said "what's his special skill?" Because they all have them don't you know.

coppertop · 25/03/2008 22:08

Similar to Hecate (and now daring myself to use the "He can fly" type replies too ).

Generally I don't bother but might say something if people thought ds1 or ds2 were being little brats.

Ds2 is still at the age where most people just presume that he is being shy when he puts his head down and looks at the floor when spoken to by strangers. With ds1 it's usually the stranger who needs to be rescued, usually when they've asked ds1 a question and he has to give them a very looooong and detailed reply.

ouryve · 25/03/2008 22:22

People are often confused when they encounter a rather exuberant DS1, quite often almost literally head on and he either jumps behind me or just says "no" in an uncharacteristic monotone when they say something to him. If they're total strangers I usually say he's gone all shy, but if they know about his autism, but don't really know his personality, I explain that I guess he doesn't feel able to talk right now but he probably will once he's found out from me that you're OK.

ouryve · 25/03/2008 22:27

DS1's special skill is breaking things. I'm almost bummed that I never get the opportunity to tell that to people who ask silly questions.

yurt1 · 25/03/2008 23:17

I used to telll people that ds1s special skill was weeing on the floor on demand.

Now I think it's scaling 8ft fences.

sphil · 25/03/2008 23:25

DS2's special skill is being able to say
ThomasthomasthomasthomasTHOMASTHOMAS five hundred times an hour at gradually increasing volume.

Do you think that counts as 500 mands, you ABA types?

Original poster
Shells · 26/03/2008 05:37

Sphil, your DS sounds great!
Love the 'he can fly' response. Must store that one up...

OP posts:
MUM23ASD · 26/03/2008 13:40

i have 2 extremes at the moment... there's the
.....he looks young enough to just be "cute/shy/tired/bright busy little boy" (even though he's nearly 9....)

....and theres the "MOODY TEENAGER" coverup...who recently at A&E after breaking his wrist- told me to shut up at least 1 million times....and kicked me in frustration .

And...i get a mixture of glances...those who think what a rude nasty vulgar boy... and from parents of 'similarly behaved' children we exchange the 'I Know' look.

Generally, i am very open about my boys- i see it as educating the world to open their eyes and SEE our kids with hidden disabilities.

and...how many times have i 'met' others who 'know what we know' by explaining ds's funny ways...

but sometimes i just cannot find the energy- as it is more important to me to keep my son safe than waste time explaining his behaviour whilst he dissapears.

i think the hardest one i still face with families is how i often choose to 'discipline' later on- as in the midst of chaos it is not worth tackling ds2 about what he has just said or done--nbut if we go somewher quiet and i talk 1:1, maybe draw pictures etc...he can be told what he did- how it affected others etc...but NOT in the middle of tescos!!!

Unfitmother · 26/03/2008 17:03

I can't be arsed to explain usually.

cazcaz · 26/03/2008 17:10

Sometimes I explain, like today at the hairdressers. Ds2 was having his hair cut and he has di george syndrome, so although he looks quite 'normal' he is very deaf and cannot really speak at all, and I felt it only fair to tell her why he was responding to her lovely chat with gibberish! She was lovely and just carried on talking to him exactly as before but waiting for me to translate his signing.

Other times I simply cannot be arsed - does it really matter about the stroppy woman who looks at him like a freak in the supermarket? Who is the more miserable. At this stage certainly not my ds. sod 'em!

MUM23ASD · 26/03/2008 17:37

once i asked a shop if i could use the disabled toilet- was looked at as if stupid- then explained that my son's are disabled.

feel that on that day that shop assistant learnt that not all disablities are obvious.

equally, i was in the wimpy today with ds3 after a hearing test- and there was a young man with down syndrome sat opposite. ds3 kept looking and taliking to me about how that man looked like a friend of his (also has DS)...and then commenting on how HE was drinking his own drink- and feeding himself 9as ds's friend cannot do this) and then to cap it all- loud as anything asked me if this man would be wearing a nappy- as his friend does....

then we all ended up chatting- the lad was with 2 adults who were not his parents- carers???

SO MY DS LEARNT TODAY that even the VISABLE DISABILITIES are not all they seem...