to expect understanding and consideration for my sn boy?

[emkana]

He has physical disabilities (mobility, vision, poor health) as well as autistic traits. He is bloody hard work but also adorable. How much consideration can I expect from a) other adults b) children?

Example: he struggles with taking turns. His older sistersunderstand and accommodate him. How much should I try and get other children to understand/expect their parents to explain to them?

My friend's DS is similar OP....he can't abide queues and is 5 so people expect him to wait. Last week we were in the zoo and there was a massive queue through the aquarium...he wanted to just walk past everyone to get to a specific tank he loves...he didn't want to push in...just to look over shoulders....after he began to meltdown my friend was stressed as she's got a baby too...so I thought ARSES to this!

And I let him...I went past everyone with him and anyone who looked at us I smiled broadly and said "You don't mind do you...Tom has Autism and he can't queue. Thanks so much!"

I just kept repeating it! Nobody said a word.

Mommy2ash thank you for saying hi to that girl :)

Seriously I can't help feeling very disillusioned with the human race that most people ignore that girl and also my DD if she waves and says hello. Seriously depressing.

Mommy2ash thank you for saying hi to that girl.

It makes me very disillusioned with the human race that most people ignore that girl,and my DD, if they say hello. How rotten is that.

It makes me dream of moving to Skye or something

Gosh yes I would expect cousins that age to be accommodating. I wouldn't expect them to be able to guess what is needed though, I think you'd need to explain to them or get their parents to explain to them what would be helpful.

Emkana, sorry to hear of your son's experience with his cousins. It's very, very disappointing and and actually sad making for you as a parent when that happens.

I think it's entirely reasonable for children of that age to accommodate your DS. Doubly so when they are cousins.

But I think their parents need to make it happen by talking to them before they spend the day with your son, going through some scenarios and how they could respond to your son.

My nephew (10) and son (6) are absolutely wonderful with my daughter (9) so it can be done at those ages. They always have been though, and it's partly because they are both such kind and soft-hearted souls, but also because they've had a lot of guidance and encouragement from parents.

I've had the experience of other relatives (of all sorts of ages) not accommodating my daughter's differences at all and it is both dispiriting and rage-making. I know exactly where you are coming from.

Can I just say apologies for the "sn boy" shorthand - he is much much more than that!!!!!

And thank you for all the kind words

You can only control your own emotion/ behaviour and to an extent influence that of your children.

I don't think confronting anyone can help, however I do think you need to work on your self confidence.

You know your DS best. You know his needs best. You are able to educate others about those needs - its then in their court to listen/ absorb or ignore. I know that sometimes in families it is like hitting your head against a wall but other times messages may just filter through or they get fed up and just do things your way even if its just to shut you up.

My DSis 11 and Autistic. I've survived the bad parent years. My XH walked out when DSwas 3, younger DS1 so my parents knew it was down to my bad single parenting.

I have three lovely children now and I'm remarried. My eldest is (still) severely Autistic, middle one NT and youngest on the spectrum but we're still working out how much of an effect her particular traits are going to have on her.

I find that sometimes i need to just be assertive and take control of situations because thats what DS needs. To an extent its putting DS's needs above that of others, but sometimes its important to just fight your own battle.

For example a while ago we went to see the giants in Liverpool. They were to be right by the trainstation only a few stops along from where we live. We had ear defenders etc and thought we'll go, look at the giants, get home again. It was something my sons Grandpa really wanted to do for his birthday and various family members were going. We got on the train which was heaving. DS has dyspraxia and is very uncoordinated. Standing on the train whilst moving isn't an option for him. I went over to the children in the accessible seats and asked if they could shift over a bit so DS could sit on the end because he's unable to stand. They moved and sat on their parents laps. It made such a difference to us because he couldn't of stood up, would have been very overwhelmed by attempting it, could have got injured/ hurt others etc.

It did take effort on my part to have to explain/ outline his needs with the risk of getting a mouthful. But it ment our needs were better met.

It is tough. Do you have a local carers group,you could join? I go to one every few months. Its really good for having a good laugh about the rediculousness of some situations with others who know exactly what you mean. Oh and I've met loads of other bad parents too. Just about everyone i've met at carers has come across the bad parenting acusation and been bruised by it.

I think that if it's family members, anything less than complete understanding is unacceptable. Your family should not be inferring that your son's difficulties are down to poor parenting. I think you'd be justified in limiting the contact you have with them.

When out and about, I don't hesitate to explain my son has sn if it helps diffuse the judgemental tension. I always assume people have no idea my son has sn and just think he's badly behaved when we're out. It helps me cope and means I'm prepared for comments, tutting and stares. It's an exhausting way to live though.

If you are "expecting" certain behaviours from others then, yes, you are being unreasonable.

You need to take into account that others may have their own special needs - for example, I have autism and due to sensory sensitivities find being in noisy, crowded areas a challenge and need to expend a lot of energy just acting 'normal' - or are taking care of their own special needs family members.

Be fair though - it's not likely that people will realise that a stroppy, aggressive child in a queues has special needs and isn't a demanding brat.

That statement seems very inflammatory, is that what you intended?

I agree that it's often hard to know what is going to be right. Without knowing the individual circumstances I would think that allowing you to go first, or for your child to not share/take turns etc, would be undermining something your are trying to teach.

I wonder this too. We live in a very small village, and my eldest DS, now 12, has lived here since he was born. So he is generally 'accepted' as everyone knows him and is familiar with his difficulties. I do worry about how much understanding he'll come across as he gets older though, and moves further afield.

I hope and pray he doesn't come into contact with many people like the woman who told me I 'should've trained him better' when he stumbled and brushed against her in the supermarket ?? (even though I'd already apologised profusely). I'm afraid my reply wasn't my finest hour.

I have a dd with AS so I am probably more aware of children with difficulties. I was recently queuing in a supermarket. Behind me there was a young boy who clearly had autism.

The dad was doing a great job but the boy was starting to get distressed. I asked if they would like to go in front of us. The man said "no, it's fine". I felt a bit embarrassed because he was quite snappy but I wasn't offended. He was clearly a bit stressed.

If a child is struggling with basic stuff like queuing then why not offer to help? What's the worst that could happen?

Lilicat you hit the nail on the head - we too now wonder what he is like in his job and it has made me very wary of leaving ds in any kind of care setting. The relative was always talked about with high praise for the job he did but he has been so horrible to us (both with the incident in question and later emails about our 'bad parenting'). We are certainly not bad parents as many in the family can verify. It's totally beyond our understanding why he would be like this and we just block him and his wife now. I never let ds attend anything I know they will be at. But it does mean that ds misses a lot of bigger family events (although I remind myself that he is not missing anything but wouldn't enjoy it, it's us that miss having him there).
I'm a very forgiving person, none of us are perfect, but I've found this one very tricky to forget about and move on.

I am in 2 minds about this (sorry). As a child my family used to meet up with friends who had a dd of about my age who had learning difficulties (I'm not aware of a precise diagnosis). As we were of an age we were expected to play together and we did but, from my point of view, it could be quite hard work at times and not much fun - down to the sort of issues you mention with turn taking and sharing and choosing games. I knew I had to be kind to X and I wanted to be anyway (mostly) but I was also somehow resentful (I certainly thought it was unfair that i got into trouble if I tried to slope off with the boys and play at any point). Looking back I'm glad my parents encouraged me to be kind but it might also have been nice to get a break occasionally, or at least to have some acknowledgement that it was actually quite a hard days work for me rather than a lovely day playing.

I also wouldn't try and offer turns if a child is having difficulty waiting - and it's not because I don't want to - it's because saying anything looks like I'm being interfering or smug.

The last time I tried to offer (a very small girl aged about 3 was crying as she was waiting for the electric ride on - full on purple face) the dad clipped her round her head and yelled at her to wait because she was showing him up. And then he had a go at me for offering as I was 'accusing him of not being able to get his kid to wait'

Seriously, interjecting when other people are trying to parent is a risky business.

And if you were the family tonight down the South Bank with your 8 ish year old in a wheelchair please don't try to shush her - she wasn't disturbing anyone with her giggling and pointing at the lights - it was 10.30 at night and deathly quiet - honestly your daughter was lovely

Well..Laurie. .sorry..but not offering turns doesn't look smug but looks uncaring. even if you are.

Barbarianmum..you had many lovely days playing as a child I'm sure. That girl probably hardly had any.

Even if you are caring I mean.

No one plays with my DD. If her cousins played with her one day she would be happiest child ever. Can't feel too sympathetic to it being a bit hard work for them when they play and have fun every single day of their lives. Sorry. Being honest.

BarbarianMum, I know what you mean -believe me, I have cried many tears over what it means for my dd's who live with him every day -
but these cousins for example get to go and live a life where they can run like they want, play like they want every day - for ds every day is a struggle... So who deserves more sympathy...

I once sat while friends of mine had s conversation about a mum they knew who bribed children in her street to play with her ds - friends were saying how outrageous and unacceptable etc

I didn't say anything because I couldn't trust myself not to burst into tears

Laurie..sorry that sounded harsh and I'm sorry that guy was a dick.

Most people I have met are not holding back from letting us go ahead because they don't want to interfere though, like the man who complained because staff let Dd go off into the swimming pool with her dad while I queued, as she had been hitting us and crying, he complained because he was waiting with 10 kids. Who had been happily standing chatting and smiling.

Emkana that must have been hard. I do actually feel people can't see past the ends of their own noses or put themselves in others shoes.

I mean not saying hi to a wee girl with LDs but ignoring her. Why do people do that? Do they think they will catch LDs? Do they think she is a subspecies? The general public disappoints me.

And am not naturally cynical but have reached this conclusion through daily life with dD.

I have severe social anxiety, I could not initiate a conversation with someone I didn't know to offer for them to go in front of me. The worry of saying the wrong thing, being thought of as inteferring would just be too much. However if someone explained the situation and asked if they could go in front I would happily oblige.