A 2 year old and her Granny noticed DS4's SN today

[elliejjtiny]

DS4 is 19 months old. He crawls very slowly when the surface is very flat, doesn't really talk (says 3 "words" but they aren't very clear), sits unaided but he is wobbly. He has a long list of vague problems and conditions that may or may not be part of a syndrome.

My other DS's are delayed as well so it's not glaringly obvious that he's behind until DN (aged 9 months) comes round to play and she is doing loads of things he can't. But mostly I just accept it as this is how DS4 is if that makes sense.

Today a little girl came up to me at softplay and asked why DS4 couldn't walk. I was just about to reply when her rather embarrassed Granny came over and said to her that she shouldn't ask people questions like that, it's very rude etc. I said it was fine as it's better to ask than just stare I think. So they came and sat with us for a bit and the Granny said how gorgeous he was which was lovely and then did that head tilt thing and whispered "so will they let him go to a normal school?"

I know she meant well but it's just so depressing. I know he is too young for that decision and these days almost all children are "allowed" to go to mainstream schools (it's getting them into SS that's the hard thing). I didn't think DS4's SN was that obvious now that he's crawling. All the drs and physios are always really positive, it's only when I hear about things being for "severely disabled children" like dla and family fund and he qualifies that I realise that he is "that bad". Also DH is firmly in denial about the severity of all the DC's SN which makes me think sometimes that I must just be negative. The DM would love DH when he talks about how our children with "mild" SN get DLA.

I can imagine that would have been very hard, if it happens again could you say "Who knows what the future holds but he is making great progress!" Or something similar?

That is what I say when questioned about the lovely little chap I do one to one with!

Be kind to youself

Thankyou. I just didn't think it was that noticeable. I kept thinking that his SN must be really obvious if a stranger asked about it as it's a bit like asking a pregnant lady when they are due, you only do it if she looks ready to drop in case you get it wrong. The great progress comment is a good one, I tend to use a variation of that with 7 month old DS5 who has milder SN and was born prematurely at baby groups and with negative people. I usually say that he had a difficult start but he is doing really well and his paediatrician is very pleased with him.

I am a wheelchair user and really do not ind when people ask about why I need it.
But kids a great because they just come straight out with it. Adults have brains which go into mini-convulsions first in case they say something 'wrong'.

'normal' school - ellie sorry if you have seen this before, but bog-standard school is for bog-standard learners. If you have an individual learner than they will need and individual programme.

We need to get away from seeing people who are less proficient at something than the bog standard folk, as being 'wrong' or 'bad' whilst holding up those with something above bog-standard performance as wonderful.

Your DC may well be doing a far better job of living life with his profile of strengths and weaknesses than Granny or any of the rest of us are.

My ds looks more disabled now than he did when he was younger, although he can walk, he uses a sn buggy a lot of the time, often wears big bright yellow ear defenders, and is non verbal, but does a lot of 'chatting' to people ('a a a a' with a lot of accompanying pointing!)

People do ask questions, especially young people,

'can he talk?' ('Not in the way you are used to, but he is very chatty and signs and loves jokes etc')

'Why has he got ear defenders on?' ('Loud sudden noises upset him, and those just take the edge off')

'Why is he is in a buggy?' (Because he gets very tired and sometimes his muscles don't work properly)

I try and be honest, and throw in a positive, and I hope that one day ds will answer for himself. When we are with his sisters, they are amazed that people even bother asking questions, because to them he is just their annoying, loud little brother!

There are also people who are just rude, 'what's wrong with him?' Always strikes me as very impolite. A lady on our road, makes a comment every time we go past and ds is in his buggy, 'oh dear, are you still in that thing, you should be walking now like a big boy, don't you want to run about....' Yadayadayada - these people are just arseholes, and with them I smile and nod and move on.

I started a thread here about having a card that explained very simply ds's difficulties, and not to judge. The thread got mixed responses (to put it mildly!) I did have a card printed up, and keep a couple in the buggy and in my purse, and have used it just a couple of times, where someone was being huffy and rude, and rather than even talk to them I just handed them the card and moved on.

Thanks. DS4 has managed to cope with his multiple operations and other issues far better than I would have done I'm sure. He charms everyone with his big blue eyes and even bigger smile.

FWIW ellie I made some cards too about Asd, some of my friends with Dc's with Asd now carry them too!

They give a simple message in 2 different ways a nicey nicey way on one side and an abrupt way on the other, we can decide which side we show based on how much the nosy person has annoyed us

It is pity I can't stand. So I have some techniques for batting that off.
That pitying look and holding my hand 'how are you' gets swept away by 'enjoying life'. And a list of recent achievements.

So some phrases that you are comfortable with (my friend say her lad 'is a great fighter, a proper hero') to throw the pity off can be handy.

If people look at me pityingly as they are passing, I look pityingly back, which seems to phase them... but, the poor things they have to walk everywhere, and they have to carry their shopping which I know it tiring.

The judgement is worse. Shouldn't you be doing x, wouldn't that help?
Of course I have stock answers back for those. 'Probably but I am too busy with...'

hazy you have far more patience than I do. I would want to ask this lady how she would feel if she had been in a wheelchair at school and adults had kept asking her if she didn't want to run around like the others, and would she say something like that to a paralympian?

We get the pity too, mostly from family who should know better. DH's grandparents love nothing better than to go on to their friends about the tragedy that is DS4's existence. Some of his issues were diagnosed before birth so we had hand wringing etc before he was even born. I always feel like I have to plaster a big grin on my face and say everything is brilliant, even if I feel the opposite because they just seem to thrive on the tragedy and drama. They turned up at my house uninvited with one of their friends once, just so their friend could gawk at DS4 (he was born with a severe cleft lip so that particular issue was a lot more obvious than anything else).

DS1 was brilliant when DS4 was born. He insisted on bringing him into school so he could show him off to anyone who would stand still long enough and proudly said "This is my baby brother, isn't he gorgeous?" to all the teachers, TA's etc. Nobody could say anything negative after that .

well done ds1!

Wow, people saying 'isn't is sad/awful/terrible?' - that was bad. I remember my DH, DDH, saying 'yes we know its awful, and it helps if you don't remind us!'

I did coach my family how to deal with me, ie what helped and what didn't.

My very dear MIL had to be told 'if I promise to say what I need, would you promise to stop asking me if I need anything?' And she did, which was great, as it is difficult to have a conversation about anything when being asked one by one which of the possible items of food, drink, entertainment and comfort you might want!

Several people had to be told that I was going to talk only about positive things. Negatives were banned.

Clever ideas that might help were fine, but better by email, thanks

And I lined up a few people who really got it, to talk to about how I really felt. A friend who asked "how are you? Not just 'fine' but how are you REALLY?"

Obviously it is a very individual thing, relationships with parents and grandparents etc, but I am hoping this might help