Aspergers/ASD support thread

Snaggles

PN & BM, I felt a bit choked reading both of your posts today. I am terrified of what the future holds for my son, and whether or not he will be happy, and I think somewhere in your replies I sort of found the answer - that he will be happy sometimes, and sad sometimes, regardless of his diagnosis, just like the rest of the human race.

I hope everyone is well and happy today. I'm a bit nervous as 'D' day approaches, but Ryan is finally settling into a 'school holiday' routine (just in time for the start of the new term :rolleyes:) and has been much more like his usual self the last couple of days, with far fewer meltdowns.

blue_monkey_2

Morning Snaggles,

Please don't feel like that - I think this all stems down to family support and I am going to go out on a limb here and say that maybe PN did/does not have a very good family unit either - because I did not either and this makes a huge difference as I am about to (attempt to) explain.

Our children will have the best lives that are possible as we are going to be there to ensure that they have the help, protection and want for nothing along the way. WE as parents can only do our BEST for them but be there for when they need us and help them with what we know, and, life for us as parents and our children is learning through each day and through the experiences of others (plus through asking others for their help and experiences, I would be lost without having you guys to speak to but it helps me which path I take to get through the day and thus making it better because I have asked someone who has been there before). The difference between 'back then' and 'now' is that we are helping our children and we are able to help, there was no-one for them to speak to really, no support groups, no website, literature, nothing ever had a name back then. My family were useless if I am honest, my father - heck, I don't even feel right calling him a father as I'd be done by the trade descriptions act, LOL - didn't really want to know and it seems now that he only wanted 2 kids - the other 2 were 'accidents' - and the only 2 they were interested in would be the ones that earned the most/were doing the best with their lives, my mother on the other hand was an alcoholic and she (unintentionally albeit) put us through some dreadful stuff too. She did try her best but as she was living out of the bottle (and most of this was because of my fathers abuse of her) it wasn't enough to set us on the right path and help us with the problems we had, plus because of how my father was with my mother I grew up with low expectations of what life and a relationship was supposed to offer. But, as I said, because I have learned to deal with my past as being just that and I have acceptance of it (OK, most of it there are still things I flatly refuse to talk about and it will always be this way) it means I am able to get on with the everyday things through my life. I have had to learn these for myself whereas for my kids I want to do this for them and help them when and where I can. My mum did help my sister through her problems (she has MH Issues) because she is 11 years younger and by the time they started to show in my sister my mum had learned to deal with HER problems - but for the rest of us it was too late. So the person who has had the best start out of all of us is my youngest sister because she got the help she needed when she needed it. Does that make sense. I hope so.

While on this subject, a few days back came across I a thread where some bloke was going on about yobbos parents blaming their kids as having some 'disorder like ADHD that was undiagnosed' and it was just an excuse for parents when their kids attack people and the like, and someone else (Duchy I think) said that they were not that good as parents because if they did care they would have realised their child had a problem and managed it as her child had problems and would never be allowed out on their own let alone to attack and intimidate people in the street so it does all come back down to parental care. And it is true. I will post the thread here is I can find it.

So, and I was going to post this but you beat me to it in a way, the difference is that we realise our children have a problem and we will do everything to ensure that they get the very best out of this life that they can and make sure that they deal with as little that makes them unhappy as possible. Thus ensuring that they are happy - as happy as they can be anyway So I hope that this means my kids will be happy and they will have me as a good example to set to them.

I am looking forward to having a few hours to myself when the kids go back to school, just to eat breakfast without others begging for some (when they have the same food on the table) and so I can sit on the sofa and not be jumped on. While I type this message Ryan is being a 'rat' that includes leaping all over me and trying to lick me - DD is sitting at the table cutting pictures from a magazine and sticking them onto paper - Easter Cards, LOL, which I have to make sure are kept safe until Easter!! Sometimes I wish they would just play for a few hours and so I can sit.

A few months ago I was clearing out the cupbaords and came across some dried lentils and that and DD asked if she could have them to do art with. Well, for 4 hours she sat and played with these, just sopping for a snack - they were everywhere (and I mean everywhere) but it was so nice to be able to get some peae. Ryan helped out for about half an hour but they then started tipping them from one pot to another but it was just nice that they were quiet so I could get on with something else. however, I have hidden the rest of what remains as it took me an hour to clean then up and then I was still finding the damn things a week later!!

blue_monkey_2

Snaggles, what is 'D' day? Is then when he goes back to school, did I miss something?? x

karmacookie

Hi Folks

I just wanted to add that it has taken my DS until the middle of this week to settle down to a holiday routine, we are all just starting to have fun and appreciate each other but it will be all change on monday!!! Back to trying to keep him organised and calm for school. I'm dreading it!

Savvy_Sue

I'm not sure DS1 is 'happy', but he is 'content', IMO.

He doesn't 'do' emotion on the grand scale - a bit of rage and frustration when younger, but not love or hate.

He would say he doesn't worry about things, because there's no point, but he does 'stress' slightly, in a "the deadline for my coursework is 24 hours away and I haven't started it yet" kind of fashion.

Now he's grown up, he knows that we love him, but he doesn't really know what it means: it's an idea not an emotion. He knows it means I fuss about things, and I like to ruffle his hair when I can get near him, and he knows it's unfriendly to attempt to break my arm when I do this, so as long as I don't push my luck TOO far he won't. And he knows it means he doesn't have to pay rent while he's still a student, and that I'll do whatever I can to make his life easier. And he knows that when you're in a family, you muck in and help rather than expect hotel service.

It did make me sad when he was younger, that he NEVER said he loved me, but now I know he appreciates me - or he appreciates that he gets a good deal from me! - so I can live with that.

Snaggles

Thanks for your lovely post BM, had to have a little chuckle at your son being a rat....lol! I meant choked in a sort-of good way I think....as in welling up with emotion, but not necessarily bad emotion. It just made me realise that Ryan's happiness doesn't depend on whether or not there is something 'wrong' with him - he will be happy, sad, angry, excited, content, frustrated etc sometimes, just like the rest of us.

D Day is diagnosis day. We know there is a meeting on the 14th which should be when the decision is made, however I feel like they are trying to fob us off. I have agonised over and over whether I am seeing problems that are not there or not, just because having a diagnosis will stop me feeling quite so guilty that I might be a terrible mother, but if only it were that simple. I'm sure Ryan is on the spectrum. I watch him sometimes, struggling with day to day life, getting confused, and I just think 'How could he NOT be??'.

Just today I could have written down 10 examples of unusual behaviour, but the problem is, he doesn't show those behaviours 'on demand' so I'm not sure how I can make them see the difficulties he has.

Well, no point worrying about it yet I suppose, time will tell and as someone once said, que sera sera....

blue_monkey_2

Evening everyone - Sue, I think you need to change your resolution..... you are a year behind, LOL, says me who has not updated mine since November (and added the 4lb I put on with eating too much food!!)!!

Ah, thanks for that Snaggles, yes I do know what you mean as I have been doing the same thing. The HV came around to get me to sign some forms and of course, he was on his best behaviour - except that he was clambering over her, not the kind of thing you would do to a stranger and he was talking over us all the time to get attention. And then you find yourself thinking 'do other kids do that anyway?' Not sure now... Good luck for the 14th though, at least it might be the start of getting everything sorted, you can't be in a worse place than 'now' and not knowing can you so just focus on that.

Well, I have to get my finger out I suppose. Business closes on Weds/Thursday so that will be weird. Mum called today at about 4pm and asked if we would be here tomorrow afternoon as she wanted the Estate Agent around to take some pictures. I was like 'what, no, the decorations are up for a start', how was I supposed to get everything cleared by tomorrow. The great news (and this is going to sound bizarre I guess) is that my sister is pushing to get everything done (secretly knows that sister is after this house for knockdown price and she thinks mum will be *desperate* to get rid - she won't) anyway, it means that on 2nd she & EA will get the court thing through (fast-tracked to get us out I hear) whereas Mum might have dragged her heels but the council are still fobbing me off with finding private which we don't have the money for. I spoke to a different woman at the council today which was silly really as she didn't know my history and was just fobbing me off with have to go private and she made me feel down about the whole thing. She said that we could come to some 'arrangement' with mum to stay here until she sells and then move but the lady from the council I usually deal with has told me that she cannot sell unless the court orders us out!! if we leave without a court order we have made ourselves homeless and the council don't have to house us!! Good job I spoke to mine first right as she has told me the in's and out's and today I wanted some clarification. OH said they are just trying to wash their hands of us by fobbing us off, she was saying 'you'll be in a hostel' etc... but thinking about it I cannot see how they can stick a child with unresolved mental health issues into one room in a shared house as he would disturb everyone else when he goes off on one. Whatever happens I am ready for it and this weekend sees a new round of packing and clearing the house. If we go into a hostel everything has to go into storage but we will keep a few things back for the kids such as DVD's, books, toys etc...

So, have a nice weekend everyone and looking forward to Tuesday (what lucky so and so's have got Monday??) but won;t get any time to myself now until Thursday thanks to the damn estate agents coming round on Wednesday (HAS to be when the kids are not there - cheeky damn sods!) And I am damned if I am going to start going out with the kids in the evening so mum can traipse people in and out for viewings, she can shove that where the sun won't shine for a start and do it around us!! Really, I am smiling inside

Snaggles

Hope you manage to get the housing issues resolved, it sounds like a bit of a nightmare, but you are doing well staying so positive. I'm sure everything will sort itself out, but it can't be nice being in the middle of it.

PS We've got Monday......:D *runs away sniggering*

Savvy_Sue

Yes I know I need to change my resolution: I'm GOWTing with Ivan this year (Getting On With It) so it hasn't really changed, I shouldn't be here at all ...

blue_monkey_2

LOL, yes, I know that feeling. I think I won't look today but then I do and then I get annoyed that I have just been reading tittle tattle. It is bizarre though isn't it, people ask all these questions and talk about stuff and you just can't resist poking your nose in and having a look and giving your own opinion. It just would not be acceptable in day to day life would it, listening to people talking at the bus stop and butting in with your own opinion. Isn't MSE great!!