AIBU to *sometimes* wish my DS was 'normal'?

[MooMoo12345]

Name change.

I just want to make things crystal clear. My DS is perfect, he has great character, a wonderful smile and can lighten up anyone's day. I actually wouldn't change him for the world - I'd change the world for him though... He has Down's Syndrome (he's 7) and life is really tough, not for me and not for him really (because he isn't that aware, but he will be later) all the children, which I can deal with, after all, they are just kids! Tend to point and go "ewww, Mummy/Daddy, why does he look like that!?" and I will happily say "he's most certainly not 'ewww', but he has a condition called Down's Syndrome" and then the parents will be like "yes, aren't you lucky you don't have that, sweetie, wouldn't it be utterly dreadful" and I appreciate it may not be said in a horrible way, but all I can do is protect my son the best I can from the world and sometimes I get really upset and sometimes wish he was 'normal', but for his sake and I get that's harsh, but one day, I'll die and there will be no one to protect him :(

One of my dd's had a temporary disability when she was younger, and I will never ever forget some young people, probably even in their early twenties, pointing, laughing, then coming back for another gawk so they could laugh all over again, as if it were a perfectly ok thing to do to laugh at another human being just being themselves. Having to put up with that over many many years, well, it's just not an easy life, is it?

I am so sorry for you that (some) other people are twats.

I have a Birthmark on the back of my head and until I was about 7 it was very large, red and often weeped - my parents were often told that it is was disgusting and they shouldn't take me out in public looking like that.

Ywnbu DS has a little girlfriend with DS who he says is the most beautiful girl in the world ever.

DS has quite a lot of birthmarks covering him people have commented including one nasty little girl and her gran about the dirty horrible little boy. Families have asked to move in restaurants as his noises are scaring their children. Two old 'dears' in another said kids like that were kept away from decent folk in our day. That's a few of many many.

op, unlike some parenting blogs I agree parenting a special child is not all unicorns farting rainbows. I adore my son but wish life was different for him. When he was small folk were a bit more understanding now he's almost 9 and 5ft there's very little of that left. Only wee ones with SN are cute you know the bigger ones are just annoying .

YANBU, I am horrified you get comments like that. What is wrong with people?

I was completely ignored by fellow passengers when my son had a seizure on the bus ..... Bunch of ignorant cunts Many of them are regular people who I frequently see, not one of them can now look me in the eye!

I get you too, my daughter is 16. The older she gets the more terrified I am for her future
No one has ever said anything bad about her in front of me probably cause I'd loose my shit but I'm sending hugs xx

My daughter has ds as well and she's as mardy as hell lol

One of my worries crooked is exactly that . My son is mega cute at the moment. Everyone comments on it at least daily but he won't be so cute if he is adult size and not acting normally . I think people who say they wouldn't change their child are deluded about how hard the future is going to be . It's terrifying .

Perfectly normal for a parent of a child with SN to sometimes wish their DC was 'normal' OP. I love my DD to bits. But she is severely disabled and as she is now an adult and I have watched all her peer group become independent, it is difficult to be a parent of an adult who cannot be left alone for 5 minutes, who is doubly incontinent and still in nappies and who needs attention throughout the night.

I have been fortunate in that I have not heard any really unkind remarks about my DD. Yes, I've seen people stare and I've heard children ask their parents "what's wrong with that girl" and the parents either trying to shut them up or gloss over the question in embarrassment when I am secretly hoping that they will give a realistic explaination of disability to their offspring. My experience of children asking about DD has been one of blunt but innocent and often well thought out questions. One small girl who lives nearby and had encountered DD asked me "how does she get into bed" as she could see DD in a wheelchair and had realised that DD could not get into bed in the way that she herself could

It is disturbing to hear that there is still such prejudice in society and as parents we naturally worry about what will happen to our offspring when we are no longer around to speak up for them and protect them.

yanbu, god what vile people to say stuff like that.
\MY child is in their 20's now and have to say I have never had abuse,,,,,lots of staring and what a shame.
ihave found now I just get on with it and ignore the ignorant starers...i refuse to allow some disablist dipstick parent or cild to ruin my time with my child.

Hereandthere - I always talk in terms of differences. We all have something that is different about us. Sometimes we can see it and sometimes we can't. Sometimes it makes life trickier in certain ways, sometimes it doesn't. I try to avoid framing it as something being 'wrong' with them.

I think this is an excellent way of explaining it to little children, and along the lines of how I'll discuss it with my DS when he asks as we've a few disabilities in the extended family and there are a couple of disabled children in his nursery too.

My DF was disabled and always very good at explaining his disability to children who were curious, he would answer their questions patiently for them. He felt it was a good way of teaching children to be understanding and respectful about disabilities. By teaching children that it's something to be pitied or looked down upon, its teaching them the wrong message.

I think it would be good OP to have a few stock phrases for children when they ask. And a couple for their rude parents too.

children shouldn't ask.......how rude

Some of the comments some of you have endured are absolutely vile. I suppose you never really know what people are truly like until you're in a situation that may differ from 'the norm'. Then people's true colours come out for better or for worse. I used to teach a boy with DS in mainstream Y6 and all the other children had been with him since Reception. They didn't even 'see' the DS, they saw their friend. So the other side of the coin can be pretty great .

I overheard a man explaining to his 4 year old daughter about disability - she had been scared by a man making loud noises.

He said something like "sometimes some people have parts of them that don't work well. Some people's legs don't work well so they find walking difficult. That man''s brain didn't work like ours so he finds speaking difficult. He was just shouting because that's his way of showing he was happy. If people have things that don't work well we must always be kind to them and try to help them as much as we can". I may have sniffled.

Some people might not like the 'don't work well" aspect and prefer "differences" but I think anything that encourages kindness and tolerance is a good thing.

I totally get you op it's really awful the amount of ignorance about and the horrid comments people make.

My son is 3.8 and has severe autism and learning difficulties. When we go out with him we have to keep him on reins or in a special needs buggy as he has no safety or spatial awareness and the amount of comments we get is ridiculous. We've had people telling us he's too old to be in a buggy / too old for reins / he's never going to learn if we don't stop babying him and one particular favourite was an old couple in tesco when he was clearly having an autistic meltdown - "oh isn't he a joy to be around".

Makes me so, so angry.

I do worry for the way the world is going if people are really that ignorant that they can't look at a child in age 5/6 year old clothes in reins and a special needs buggy and think maybe he has special needs and maybe that means he isn't going to behave in a "normal" way and that's okay!

In my opinion they need to start talking about disabilities and differences earlier in school, when my eldest child told her friends her little brother had been diagnosed with autism none of them understood what it was - and the parents only thought of rain man or the curious dog incident thing!

I really feel for you

I was in shock hands I kept waiting for someone to ask ....... didn't happen! I wish I had said something now, and god forbid it happens agains I will!

My DS was diagnosed with autism this week, although I have been worried about him for over a year and 'known' for the last 8 months. He is 3.4.

Like a PP's child he is unusually beautiful but, although verbal to an extent, ignores people completely when they speak to him. And he doesn't answer questions at all. I have already had comments about how rude he is. Also about how he is too big to be in a buggy (it is his 'safe place'), he should be using a scooter /bike (he can't, just doesn't understand them), I should stop him screeching, I should be more strict with him about eating what he is given etc. He is still young so some of his behaviour is put down to that but I know as he gets older his differences will become more obvious.

My heart is breaking for my darling boy. I couldn't love him more but if I could wave a magic wand then yes, I would take the ASD away. My biggest fear for him in life is that he won't be loved and will be lonely. Seeing him completely oblivious to his peers and with no friends (after 2.5 years attending nursery with these same children) makes me incredibly sad. He is my whole world but who will love him enough after I am gone?

I completely understand what OP and others have said, it is tough.

You poor thing, I wish I could change the world for your DS too, not him to fit into this cruel world where adults can't even be civil about a child, let alone a child who will come across his own challenges in life.

My DS's best friend at 5 was a girl who has DS (called C), he never noticed, just that C had trouble with some things and wasn't it good he could help her with them. We moved and much later a conversation about Down Syndrome came up and I told him that this was what his friend had and he was genuininely surprised that she had a "condition", to him she was just C who had her own strengths and weaknesses like every other child. Long may it last, I hope.

Fairylea I totally agree, there needs to be more education. I taught before my ds came along. He's 4 and is fairly high functioning autistic. Total delight, cutest kid I've ever seen, but lots of traits that can make everyday activities tough. As soon as we got his diagnosis I went into his nursery (mainstream local one) and had a chat with his classmates about how ds has a brain that works differently so he behaves differently. We talked about how he can express himself, and how he has super powers with his super hearing and super eyesight. The kids were awesome, and I left a couple picture books about autism for them to read too. I know the nursery staff have been working really hard to make it a suitable environment for him as well. At a birthday party recently, some of his nursery friends were really excited to see ds turn up, they ran over to him and very quietly welcomed him to the party. He still got a little upset as he was so crowded, but one of the girls took him aside, stroked his hair and told him what a good lad he is. His classmates are amazing because the nursery staff and I explained to them what is going on inside his head. It's not rocket science! If I return to teaching I'm definitely going to do lessons about differences.

We've had our fair share of disgusted looks and under the breath comments too, nothing that can't be ignored yet. A few days ago ds had a huge meltdown in the supermarket, didn't last long fortunately, but he was very loud and very upset. A few minutes after he calmed down, a woman came up and, very gently, asked if ds was alright - she had worked win autistic people before and suspected ds has asc - was really lovely about the way I handled things and ds held her hand and had a wee chat with her (as much as he can anyway!). The whole experience was really reassuring for both me and ds - that's how things should be, that's what the world should be like. Let's campaign for understanding differences to be part of the national curriculum.

Birding..don't despair. My DD and all my friends children with autism came on so much between the age of 3 and 9. At 3 my DD wouldn't acknowledge us or anyone and was totally in her own world. Couldn't join in and didn't look at other kids.

Now she demands constant attention and says love you and gets really excited when she sees other kids. And will sit nicely for ages at school. .unimaginable at nursery, where she had to be strapped into a chair with desk.

I think there's a difference between children asking (why can't xx climb up a rope?) and making comments that are negative (eg ew look at xx). I would be mortified and tell my dc off if they said anything negative based on someone's appearance.

People are rude though dd1 when she was tiny had a massive old 50p coin-sized birthmark (very minor thing in the grand scheme of things) and while 95% of comments were pure curiosity (fine) there were some 'ew look at that baby' ones also. Even more bizarre were the adults who didn't like to ask and were privately terrified it was something serious sighs. It must be so hard op