How do you get it through to your friends?

[macwoozy]

If you didn't know any better, then watching my ds with several of my friends and a couple of their children around Xmas time, for an hour or so, you might think he looks and acts typically normal for a child of his age. There was no stress for him, everything to the last detail was explained, the childrens game was planned and ruled by ds so he couldn't have been happier. Everything was as he expected. It was a lovely time for me, I felt proud of my ds.

But why did my closest friends who rarely see my ds feel the need to stress to me how 'normal' my ds is. This is a child who will always need 1:1 at school, can't join in with the typical clubs like cubs and karate etc, is clueless on how to behave or unerstand what the hell is going on at a party, becomes so aggressive when all this overwhelms him.

Next time I go out with mates I have this urge to bring out with me all the latest reports of him but I wouldn't want to bore them with it. Do you ever find it difficult to get it through to your friends how bloody difficult it can be having a child with ASD.

It's because they don't see all the forward thinking you have to do.

TBH I don't see that many parents who don't have children with an ASD, partly because when I do I feel like I have a strange fixed grin on my face and have to pretend to be someone else (there are 2 people I don't have to be like that with) and can only do it in small doses. Also because we just can't meet up so it never really happens, but it's one reason why I didn't do toddler groups with ds3- different world.

I've found that making friends away from anything to do with children is the best way to kind of get back normal friendships iyswim (well apart from the ASD ones). The conversation is never about kids (most of my friends I've made in this way don't even have them), so don't haveto do the fixed grin thing. And weirdly enough its much easier to talk to them about what life is like with ds1.

My ds's sn are becoming more apparent now but friends still make "Oh he's just laid back, he'll catch up, everyone gets there in their own time" type comments.

This sounds awful but yesterday some friends turned up when he was doing his physio, strapped in to his standing frame with his leg gaiters on and his boots ( he LOVES it, gets really excited) and they were visibly stunned for a few seconds. I think they are starting to realise that he is more than just 'laid back'

For some reason a lot of people get very threatened if you say that something is harder for your child/easier for NT children. Look at the threads on here that have gone pear shaped for that very reason. I've been repeatedly told on here I don't know how difficult it is for NT children (despite having 2 myself). You're not allowed to say it. Hence you have a choice of fixed grin, pretend to be someone else, or make friends with people without children

we can keep each other company.

was it a nightmare (see my plaster thread on other subjects)

I'm hoping my dad wil be able to do it.... God the state of our house is so depressing. We have spent a fortune (we couldn't afford) in the last year making it watertight. Now the garden fence has blown down (which obvioously has to be replaced asap- is being done the beginning of Jan- that's a grands worth- god knows where that money is coming from- but we have no choice) now this. Grrrr.

Macwoozy - my ds1 hasn't been diagnosed with ASD but I just wanted to say Hi and I can relate to this a bit. Ds1 doesn't need 1:1 support at school - he's just finished his first term in reception and is thriving on it, I think because it's so structured! But your post reminded me of when things go well in a day with him, it's because I've taken him through what's going to happen, sometimes hour by hour, each morning, so he knows exactly what's going to happen. I wouldn't dream of doing this (or needing to do this) with ds2, but ds1 needs to know where he's going, what he'll be doing, who's going to be there etc. That way, he stands more chance of enjoying himself - and therefore so do we!!

Anyway, different kettle of fish and hope you don't mind me posting - it just struck a chord with me!

Yes it is all about forward planning, and making sure ds remains as stressfree as poss. There are so many triggers that can cause ds to become very anxious, things that wouldn't even effect an NT child, I'm always on the alert. The reaction from my friends has really bothered me, just because he behaved particularly well for that hour, it's like all I've said previously about ds will now fall on deaf ears. I just don't understand why I feel this need to fight my corner, and why it's important for me that they understand about ds's difficulties, I only wish they could follow him around at school for the day.

I do understand that feeling of wanting people to understand but I think its so far from people's experiences that it's just not possible. I mean how would other parent sof a 7 year old undertand what its like to not be able to open the front door without knowing where ds1 is, and not be able to walk outside ensuring that someone is holding onto him. How would they understand that we have to plan how we can get from the front door to the car with the 3 children and have a discussion about it. It's too far from their reality. Why would they udnerstand why I can't meet them at the park with the 3 chidren because it couldn't be safe. Why would they udnerstand that when we meet and they say "oh can we just do x first" that means I have to bail out. I don't really tell people in RL what its like now because I don't think they can understand, so do that fixed grin thing when I'm with people who don't get it. I don't think there's an answer tbh, other than ensuring that you do have people that you can offload to- usually because they're in the same situation.

whjat I'm trying to say is that if you keep trying to get people to understand you're onto a loser really- but well worth trying to find people who do because they live it as well.

I agree, I doubt it's even worth the effort but they've just made me feel that I've previously exaggerated his difficulties, oh I don't know, I just feel so sensitive about it. I take it spreading out all his reports on the pub table when I next go for the girls night out is not such a good idea, right?

Agree totally about forward planning. We plan everything to the last detail, the best case scenario, the worst, the waiting, the get out fast, the how fair is it to the other kids, the explaining, the constant reminding, the constant reassurance, the helpers(usually my wonderful eldest two children.) Nothing is spontaneous even though to outsiders it may look it.

Agree with JJ, dino etc you will never get people to understandthe behind scenes of your life.
Most of my friends do have kids with ASD and we have some great times even if we have gone somewhere and one of the kids refuses to get out the car etc, it's not funny on your own but together it is.
Do you have many friends with sn children?

I only have one really understanding friend with no sn children and I think it's because she is not afraid to say "what are you going to do, How will you manage" etc. She acknowledges the problems rather than painting the glossy front that most others do.

I also have NT children and of course they have their own trials in life but I know that they will always have choices.

ha ha @ taking his reports along. Have you seen autism every day (I'll give the link if you haven't- or google)- I'm not sure it would help your friends understand as it focuses on moderate/severely autistic children, but you might find it interesting. There's a bit where most of the mum's in turn say something along the lines of "people have no idea"; might strike a chord.

I don't have any friends that have children with SN, but my ds does see his grandparents fairly regularly and they totally understand about ds and his difficulties, they can see it for themselves anyway. I like the sound of your little outings maddie

Thanks for that Jimjams, I've just googled it and will now watch

I know dinosaur, I don't think there are any easy answers, just so blimen annoying.

Just had a quick think about this and here's my off the cuff thoughts:

I think I'd rather people on the 'outside' think of my DD as "normal".

My close friends see and hear the harder aspects of having a child with Down's syndrome but in general I want it to be perceived as easy as possible to jo public, mums and kids at her school. The easier it seems, the more "normal" she is perceived by others than the more she'll be 'allowed' to intergrate.

If they think about how different she is and how hard stuff is for her then they'll treat her differently, put her up on a shelf, not invite her to stuff etc.

The bigger deal I make of it, the bigger deal they'll think it is, and the bigger deal it'll become.

Dykwim?

I guess you'll have the opposite problem in a way TC. Because people can see your dd has DS they'll automatically make assumptions about her abilities. Those assumptions may well be wrong- and you need to fight back against that. For something like autism because the children look normal the assumptions tend to be that there's nothing wrong woith them, that a bit of parenting couldn't sort out. Hence I've had people suggesting ds1 just needs a good smack, the fact he can't talk, has very limited understanding, can't dress himself, is unable to walk down the road alone doesn't matter. He looks normal so all he needs a good hiding to knock some sense into him.

In both cases the problem is ignorance- I'm amazed by how much people assume based on a brief look at someone iyswim.

Good point well made JJ. Yes I see that. What a mad old world this is aye.

I have to say I find myself being guilty of this sort of thing with my own sister, or I used to, i'm much better these days. But I used to feel that if I was stern enough with her that she could just snap out of this particular compulsion I think we (my family members) have all felt it in some way. My dad has felt if he shook her by the shoulders it would suddenly bring her roun d and she'd come out of the bathroom and so on!

compulsions are bloody difficult. It's ds1's compulsions that make him so difficult to take out (because he had peering through keyhole and shutting doors and examing stairs compulsions- makes a trip down the street interesting). Without the compulsions he would be far more manageable (and teachable)-- when sat facing him you have about 2 seconds to get his attention before a compulsion kicks in a whoosh off he goes.