the wonders of taking an autistic child to a Broadway show

The wonders of taking an autistic child to a Broadway show...we took him to see the Spiderman show whilst in NYC and it was difficult. He is Spiderman obsessed and a result of his disorder is that he has no patience with things being wrong in any way. He expected it to be fairly bad but I think it was worse than he thought. Obviously there is such a thing as dramatic license where shows like this are concerned but he cd not cope with the fact that they got so much of the story details wrong. Then there was the bit where they hint at a part of the storyline in a couple of places but he didn't understand about them dropping those hints for the big reveal later in the show. He got angry cuz they didn't explain it properly. He was also irritated by things like the fact that the newspaper office was all set in 60s style which it shd be but then there were lines written in about facebook and computers which most of the audience thought was quite funny but to him it was just wrong. Oh and the constant references to U2 songs when it was written by The Edge and Bono. All the first half he is sighing loudly and laughing at how stupid it was (he was not impressed with all the special effects, loudly expressing how pathetic it was) and ppl around us were very aware of him if you know what I mean. Then the second half really got him going. A great deal of this was frankly boring and tedious, centered around Peter and MJ and all very nice but yawn. My son, having been irritated to distraction by the first half, was now getting bored and that is soooo much worse. I managed to keep him under control for about 5 minutes but then he decided to get his psp go out and start playing a game, with the sound off so not bothering anyone. The usher shouted at him (and I do mean SHOUTED, even tho there was a show going on) to turn it off and he started to argue with the guy that it wasn't a phone, it wasn't hurting anyone but the bloke was adamant you shdn't bother the ppl around you...even tho it wdn't. So instead he spent the next ten minutes fidgeting constantly, muttering under his breath and generally making it very clear that he was not impressed by the show. I wanted to hold up a sign saying he has an autistic disorder, this is good behaviour by his standards! Unfortunately you can't explain this to everyone. The amount of looks ppl gave me as if to say "how dare you let him behave like that?" and "can't you control your child". Bless him, he did acknowledge that he wdn't say what he thought to his father (who cd only get a ticket on another level so wasn't sitting with us THANKFULLY) cuz he did appreciate that the tix cost a lot and his father wdn't want to hear that he wasn't impressed. Having said all that, he said the best thing as we were coming out.. he did say the one thing that made it a bit better was that "you 2" (meaning his dad and me) enjoyed it so it wasn't a total waste. He then laughed at his own play on words..."I just realised I said U2, I shd have said "you both" but U2 is appropriate". Funny and clever, I'm so proud.

the arrogance of "healthy" people

This morning I rang up to book my tickets for Nickelback on Jan 19th. All was fine until she told me the price was full price for 2 people when we've always only paid for one disabled ticket cuz my husband (or whoever might go with me) is needed to push the chair and assist with whatever else, getting drinks, carrying a bag, whatever. As nicely as possible I asked since when does my partner not go free? You wd have thought I'd asked her to kill her own mother!!! She was practically shouting at me about how they can't assume anything, some people have independent wheelchairs, you said you wd be coming with your husband - your husband isn't necessarily your carer, a lot of disabled people will get offended if we assume they can't cope by themselves, we can arrange for someone to push you within the arena if that's all you need.....I'll tell you what I did get offended by - her getting so angry at me as if this was all about my attitude to her! It sadly shows, as with parking bays and blue badges and many many other disabled facilities, that the decisions made about the facilities are not made by the people who actually use the facilities, they are made by people who are in no position to remotely understand our needs. She actually said that when I said I was going with my husband she cd not automatically assume that he was my full time carer. No but by the same token I shdn't have to justify whether he is or not, for the purposes of going to this concert he is acting in the capacity of my carer and they shd not have to know that. It proves in my mind that most people making these decisions have no clue what being a carer actually means. They obviously have an image of you requiring to be fed or attended to every minute and anything short of that means you don't really need "a carer" at all. I find it completely ludicrous that they say they can arrange for someone to push you to your set within the arena...right so I logically need someone to push the chair to get me to the arena but it's okay they can just push me to the door and then leave? Obviously whoever assists me to get there is going to come with me to the show. And someone can just push me to my seat and then what? What if I need a drink or something to eat, what if I need the loo, what if there's some kind of emergency...they don't think these things through. We have had that once before where they insisted on "being helpful" and having their own people push my chair - we had to wait about 15 minutes for someone to come and they disappeared the second they had deposited me where I wanted to be. If this was in a huge arena and I was on my own it's really a completely unworkable situation. I wd have liked to try and explain that actually I've never been asked to justify the carer ticket before but tbh I cdn't get a word in edgewise. I did try to say actually I've never been asked before but that just set her off again implying it was my fault for saying it was my husband going with me. Really? Every other time we've booked tickets anywhere they have just said the price for one ticket and no more was said about it. I am sick of this attitude in this country these days that situations that have existed for centuries suddenly are a problem because one person in a million MIGHT be offended. Why oh why can they not ask us actual disabled people what WE need. I find it offensive that they are telling me what I need and then going off on one because I'm suggesting that they've got it wrong. It's the assumption that the only reason you need assistance is to move the wheelchair, they don't understand there is so much more to being a carer.

The best place we've had for this was Milton Keynes. Bon Jovi and Nickelback that shd have opened Wembley but it wasn't ready. MK is a huge outdoor arena, it was a beautiful hot summer night and tho I'd have rather been at Wembley it was a nice place. We basically were allowed the "backstage" entrance thru some car parking and separate from the difficulties of the main crowd. As at O2, the disabled area was just a large platform which made it really easy to get the chair around and get comfortable. At Wembley it's literally a fixed seat with a limited space beside it. At MK there were surprisingly few security people whereas at O2 and Wembley they hover and I feel under suspicion the whole time. If I do stand up, they watch me to see if I can actually walk so I must be pulling a fast one being in the disabled section. I really felt completely normal and comfortable at MK, just left alone to enjoy the show. Maybe the problem is London, other cities might be a bit more relaxed.

not a good start to the day but there we are. I have my tickets that's all that matters!!!! Can't wait. Right, rant over, coffee calling, legs hurting, child fed, feeling a bit like I've done a day's worth of crap already and it's only lunchtime.

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I am so lucky I have not had a day like this for so long but the feeling of complete hopelessness has unfortunately taken over today. I don't know where to start...swine flu maybe. I have now had this awful chest infection (which makes it sound so simple) for over a week. Every day I wake up thinking I am going to feel better today but no such luck. I pulled a muscle in my back four days ago which is only just beginning to not hurt. It felt like I had been shot and stabbed and cracked a rib all at the same time. I have rarely felt pain like that in my life.

Michael is much much better today, downstairs playing his games and looking brighter than he has for weeks. I actually got him to explain a little about his friends at school. My brother rang today talking about bringing his son down to see Michael and he's saying things like oh well they can go into town or they can go other places as if it was completely normal and I expressed to M how difficult it was for me to explain to people like my brother that he doesn't do this sort of thing. Yes he can get on the bus and go into town now but he has no interest in wandering round the shops or any other pointless filling time exercise whereas his son does that all the time. Anyway it was very interesting that he said about how the kids he's friendly with at school are just the same, they don't go out, they don't go to pubs etc either and one has family problems that keep him at home a lot. I suggested about them coming here or vice versa and that apparently doesn't happen either but he seems ok with just talking to them all on messenger etc. I feel a little sad that I can't do much to help the situation but I do wish his father and certain other people had some understanding that there is nothing wrong with being the way he is. He actually said that's why he'd rather sleep in the day and be up at night cuz then he can talk to all these kids in Canada about games and figures and the stuff that is important to him and not have to feel guilty about not being "normal". Thankfully he gets that I get it but he does understand that I'm stuck in the middle having to listen to people like his father and grandma moaning about what he SHD be doing instead. Well in my book he shd be doing whatever makes him happy and if pub crawls and window shopping don't do it for him, I don't see why he shd have to do it just to make everybody else happy. Isn't it sad that even his own father doesn't understand him?

Life with an autistic son

My lovely autistic son Michael is about to turn 18. We were discussing this with him last night as grandma was saying how she wanted to give him "something that wd last" not just another action figure or whatever. This shows a) that she is from a different generation who have a different perspective on the value of certain things and b) that she does not grasp this child one iota! Apparently she meant something like a stereo system which is what she bought his father when he was 18. Of course these days, an iphone wd be far more relevant but that fact aside, Michael does not listen to music and has no requirement for a stereo (he has of course a computer, an ipod, etc). It also shows that she has no understanding of the value of the figures he collects, in his opinion they do last as he still has every last one he has ever bought (thankfully we have a big house!). He cd still produce every birthday present she has ever given him if pushed, they're all there somewhere. Grandma has no idea of modern society and what any kid today really wants let alone my son. She also has the same problem as her son, they can only do what they think you want rather than listening and learning what you actually do want. Anyway I'm sure she'll be very offended and upset that Michael doesn't want what she wants to give him and he finds it offensive that her attitude towards his figures is so scathing when they matter so much to him.

We then endeavoured to explain to him why his 18th birthday is so important. You can drink (he has no interest), you are legally entitled to do things like vote and do independent things like get your own flat (chance wd be a fine thing), be legally responsible for yourself (no concept of that and frankly terrifies him)...his response was that he didn't really understand birthdays anyway, it's just celebrating the fact that you haven't died for another year! He also suggested that he cd show grandma that he was buying a game that has an 18+ rating, wd that do (which was mildly sarcastic as he's been able to do that for years anyway cuz he's so big noone's ever asked)? I don't know who's missing the point more...

Please tell me I'm not alone in this insanity? Please tell me other people have strange children with different views and that there is someone else out there with a kid like this!!!!! Tbh I can't fault his logic, but grandma doesn't understand and his father constantly has this bizarre attitude that "well he shdn't be like that"...well maybe he shdn't but he is, what am I supposed to do about it? His father never has learnt to approach the child from the child's point of view not his. At least nowadays he accepts that if we want the child to do something, I have to do the asking cuz I know how to deal with him. Yes well, most people don't respond to being barked at! Obviously his 18th is of far more importance to us than it is to Michael himself. His father's disappointed that he can't take him out for his first pint (I'm thrilled I don't have to worry about him binge drinking and all the other awful things that happen these days) and grandma's disappointed cuz she can't buy him something that is important to her but means nothing to the child. My opinion of course is apparently of no relevance to anyone. God I love my life.

following along with this total lack of understanding, thanks to my friend Nessie for finding this...
http://www.facebook.com/note.php?note_id=137094266829&id=766393109&ref=mf

what goes on in the mind of someone like him?

what goes on in the mind of someone like him? I know his father was diagnosed schizophrenic but I don't know if that's it with him but he's sure as hell got something ridiculous going on in there. I have no patience anymore. You'd think after twenty years of this crap I'd either have got used to it or left but hey life's just not that simple. Maybe it's the fact that I now have my own money in the bank and don't feel so dependant on him that I can step back and deal with it all a bit better. This morning yet another series of examples (oh no not just one!). My friend from Montreal's wife is here visiting family and she brought her brother over the other night for dinner. A perfect example of what he's like, he just didn't shut up and I cd barely get a word in edgewise to find out anything about her brother or have the chat we girls wanted to about my friend and what he's been up to for the 30 years we were apart! So when she called this morning he unfortunately picked up the other phone. She had meant it to be a quick call to say she'll be back from Spain on Friday and we cd get together just the two of us and have a natter. However it turned into a lot longer phone call cuz he kept butting in, talking very loudly and repeating himself and doing everything he's spent 20 years screaming at me for doing! After the call, I pointed out that he was going on and on, and suddenly it's him trying to shout me down about how she had said she wanted to go and I asked her one another question. True but that was five minutes after she said she had to go because he had just kept talking and talking and my one last question was relevant to us getting together which got quickly answered and then the call ended. He seems to have conveniently forgotten the five minutes in between where he did all the talking!!! Then a few minutes ago another winning example. F1 qualifiers had finished so he just gets up and walks out of the room leaving the tv remote on the other side of the room. Sounds stupid I know but ten minutes later he comes back in having left the tv on horse racing (snooze), and announces he's going out to do things and starts to walk out again. I very quietly pointed out that the least he cd do is hand me the controls and not have left it on bloody horse racing and he's suddenly shouting at me that I should chill out, nobody died (which he seems to think is such a clever thing to say) as if I had tried to chop his arm off or something. I pointed out that I had not raised my voice in the slightest, that I merely requested that if he wasn't going to be watching it the least he cd have done was hand me the remote and he just proceeded to shout on for five minutes about everything I do to him. The world is about him of course, silly me for ever trying to point out how something he may have done affects me. Eventually he had to actually concede that I had a point, that it wd have been nice if he hadn't just walked away like nobody else existed when even when he's not there I always make a point of leaving the remotes where he can find them. Little things but I just thought it was selfish of him to just not think. The saddest part is he never cd actually just say sorry. Normal people this wd just be a two minute conversation; cd you at least give me the remote, (sarcastic tone) good grief leaving it on horse racing of all things (smile) - oh sorry yes (and passes me the remote). Over in two seconds, no-one upset. Instead a simple remark turns into a ten minute personal attack on me and not the slightest idea in his mind that he has ever done anything that might upset me for any reason cuz apparently he's perfect. I'm sick of it!!!!!! (Yes I cd have just got up and got it but 1) it's not that easy for me to get up especially on a day like this when my legs entirely ache and 2) that's not the point, he left it where he was sitting rather than considering the other person in the room). 20 years I've put up with him saying things like no wonder everybody hates you cuz you talk so much and cuz you say things like that (of course everyone in the world can be as offensive as they like to me but if I express an opinion, I'm aggressive and disgusting and have no right to be alive). The interesting thing is that recently we got to be around people who didn't consider him to be the centre of the universe, these were people who weren't really that interested in him, who wanted to talk to ME, hear what I had to say. This is a rare experience to be around people who noticeably found it a bit hard to take him talking so much, who didn't necessarily find everything he said so amusing as he thinks he is, people who actually noticed how he puts me down, interrupts me, talks over me, argues with everything I say, makes a big thing about how wrong I am and then promptly repeats almost word for word what I just said but when I said it it was wrong. He has been surrounded by the same "friends" for the last 30 years and he doesn't understand that people inside that group just accept him (and most of them behave the same way in truth) but people outside that circle don't necessarily see him quite the same way. His best friend for example will ask you a question and then when you start to answer he'll literally turn round and talk to someone else like you don't exist. Yet in Michael's opinion, I am the only one who interrupts him and cuts him off!!! Funny how he doesn't notice when someone else does it or especially when he does it to me, it's not wrong! It's like Nixon, he's never done anything illegal cuz when the President does something, it's NOT illegal. Hey ho he's gone out now so I have peace and I intend to do nothing and I'm not going to feel quilty about it either.