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 :(

Yanbu op.

Any parent of a 'normal' child who makes those kind of comments deserves a punch in the face. Complete and utter ignorant smug wankers.

I totally get why you feel that way as I have a very quirky different to the 'norm' child with special needs. I find at least half the population are ignorant tossers. The other half are mumsnetters ,

Do people really talk like that OP? I find that quite shocking.

And I suspect all parents of nt or SN children wish their kids has easier paths too xx

Having a wee cry here too

As a previous poster said you have to block out (and feel incredibly sorry for) adults who behave in this way. Children of course ask, which is normal and I always do my best to explain things to them. It is the adults who can utterly grotesque.

I was in a shopping queue once and a lady turned around and said "in my day if you had a baby like that you left it in a drawer until you didn't hear it cry anymore"

I agree, things can change significantly for kids with autism - my ds has made huge steps forward in the last few months. He still has a very long way to go to catch up with his peers, but we very occasionally manage short conversations now, 6 months ago I'd never have dreamed of that. He goes along to the gym and library at nursery happily, last year they couldn't get him to even leave the nursery. He's still not talking to his peers without support, but I'm now confident he will get there. My friend has a 12 year old autistic boy who is doing incredibly well. Apparently he was very similar to ds at age 4. You just don't know what is around the corner. Did they diagnose autism spectrum disorder? When my ds was diagnosed a few months ago they made a huge fuss that it's autism spectrum condition now. Much friendlier term, and more accurate as far as I'm concerned.

Thank you so much Fanjo. That is what I most hope for for him.

I am truly shocked by some of the things that have been said to people - leaving a baby in a drawer until you can't hear them

Flabbergasted at some of the stories on here.

I have a friend with two children who have achondroplasia- they have had people walk up to them in restaurants to take photos of the "freak family". Photos!!!

People can be fucking horrible.

If he was "normal" he wouldn't be him, I can't believe adults can be so rude and thoughtless. They should also teach their kids some manners.

Photos!

What is wrong with people? I didn't need to have my own child with SN to have a modicum of sensitivity. Well, they clearly have their own problems!

Ashvis, thank you for your words of optimism. I am very glad, and heartened, to hear your DS is making good progress. I don't know exactly how they have diagnosed DS (ASD or ASC) as I am waiting for the letter from Thursday's assessment, but maybe I should take control of that!

I definitely need to have a discussion with nursery about how they are training their staff and what their approach should be with DS's classmates. I think that is much easier now he has a diagnosis - they were very cautious about their language before, which somehow skirts around the issue.

Yankee

I suspect most parents at one point in time or another wonder 'what if' about their children. IDTYABU in that, maybe the thing you are being unreasonable in is that your attributing it purely to the downs syndrome..I don't know

Well since they openly say it and also say it in front of her DS she is definitely NOT being U

What helped with ds' nursery was a long document I wrote. I detailed all his strengths, traits, areas of interest and difficulties he has, along with strategies for helping him. The staff definitely need training, at one school I worked in the head teacher arranged for all members of school staff, dinner ladies, cleaner, the janitor, everyone, to get training because we had a couple of newly diagnosed children in school. Made a huge difference! I read the book "Autism is..." to my ds' class as well, and some of my friend have bought it for their children too after borrowing our copy. I think locally it's known as the MiniAsh book! There are loads of picture books out there, but my ds really likes that one and can identify with it quite well. He also wears a t shirt that says "autism is my super power" when we are out and about quite often - we have had some kind people commenting on how great it is! I just wish people would see others with disabilities as more than the sum of their disability.

The number of people who seem scared to mention the "a" word for fear it causes offense is amazing. And we've had people say "oh, I'm so sorry" when we've told them ds is autistic too. I'm not sorry, I love his differences. I'm just sorry the public in general have such limited understanding!

I will order that book, thanks!

Hope you guys like it too - we ordered a few different books but others referred to the autistic child as a bit like a baby, and made out all autistic children were non verbal. Ds' classmates do baby him sometimes, he definitely brings out the mothering instincts with some kids, but the book also talks about strengths that are comparable to ds' - spotting things other people don't see, excellent hearing, love of learning - these things should be celebrated. It's very reassuring!

I can assure you not everyone is so cruel. If my children ask me about other children been different, I explain in the nicest possible way and encourage my children to me kind. It is difficult to explain at times as I don't want to minimise disabilities but I prefer my children to not see the disability but the person. So I try to teach them everybody is unique and we are all different variations of normal. But then I don't really like the word normal either.

Some people are so bloody ignorant, but there are plenty of kind hearted people who will love your son for him. I have a friend with severe cerebral Palsy and she's has thrived in life. She's faced ignorance and judgement but she's also surrounded by plenty of friends and family and that's what counts. :)

This has reminded me of an incident with my nephew.
We were in a park (me, dsis and dn) and a little boy with Downs Syndrome was playing on the slide. DN pointed to him and asked my Dsis what was wrong with his face. There was no malice in this (dn was 4 at the time) and he was just curious. Dsis was so embarrassed because the boy's parents could hear that she pulled dn away and talked to him about being unkind.
DN was upset because he didn't mean to be unkind. Dsis then suggested that dn go and play with the boy, which dn did - they had a great time.
It was only when speaking to the boy's parents that we realised that from their point of view, dn had pointed out their child for being different and Dsis has dragged him away - they thought she was trying to keep dn away from him.
I was so surprised that they thought this but they said it happened all the time Its a terribly sad way to be for people, but please be assured that not everyone is like that. Dn learned at the age of 4 that different doesn't mean bad - he and the little boy are still friends a year later, and dn has made himself a little speech explaining to people who comment on his friend "his name is X. He has Down Syndrome. He is nice, he goes higher than me on the swing. Come and play etc" - it's lovely to see/hear.

wow that's just rude. My youngest ds best friend at daycare is a gorgeous wee girl who has Down's syndrome. He's only 2 3/4 so doesn't see anything different -he just thinks hers glasses are fab - pink and sparkly!

then the parents will be like "yes, aren't you lucky you don't have that, sweetie, wouldn't it be utterly dreadful

People actually say that? I'm flabbergasted

People can be incredibly rude and ignorant - but when they actually get to know the whole situation, it really helps. I've had friends envious of aspects of our life with an autistic child. We have no problem getting him to bed, and he will apologise as soon as he's done something naughty without having to be asked. I'm envious of their wide diets, and long conversations with their children. They wish their child could focus on something as well as ds can, or have his memory. I'd love not to have to use a buggy but ds often refuses to walk and gets tired easily. When you really get down to it, there's good and bad points about everything. And yes, having a child with additional needs can make the world a harder place to negotiate, but just sometimes it's easier too. If I were in charge, everyone would attend a course on all kinds of disabilities and differences.

Ashvis, my DS sounds very similar to yours. Very well behaved, within the rules he understands! When it is just us I dont even think about it much - the only thing I really feel I miss out on is chatting with DS and seeing the world through his eyes. And hopefully, to some extent, that will come.

I suppose the problem the OP was articulating is not how it feels to be in a family unit with a child who is disabled or different, but how the attitude of others can make you feel about it, and the impact it can have on yourself and your child. And sadly it seems that many of us have experienced this

Absolutely, Birding, we've had it a lot as well. Today we had people back away from ds because he was flapping his arms in excitement. We had a nursery discourage us from sending ds there because of his autism. We've had families shepherd their children away from ds in the park. We've had disgusted looks from people on the rare occasions he has a meltdown in public. We've had the "he's too big to be in a buggy" comments, along with comments about him not being potty trained, and his restricted diet. People have said we are just lazy parents, need to be stricter, all sorts. Fortunately we've seen how marvellous and compassionate people can be with just a little bit more knowledge. I completely agree with the op, I don't want my son to be any different from the wonderful way he is, but I do often wish that more people were as accepting of him, and could celebrate diversity instead of shunning it. We've had some lovely experiences recently with understanding members of the public, just a shame it's often the exception rather than the rule.