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JeanneA

What happens when Statement ends at 19?

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Does anyone know what happens once your young person reaches 19 and the Statement of special needs ends? I was told about this sometime ago but admittedly have forgotten. If anyone knows the answer I would very much appreciate of knowing, thank you.

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I have someone coming to see me from Connexions on August 20th regarding sorting out an LDA for Glen so that is good news. I will let you know how the meeting goes.

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Hi Mike thanks very much for that link it was most helpful, I will study it again before the guy comes round to discuss the LDA with me in August. :-)

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Thanks darkshine. The director of Glen's care home has been in touch to say the would write a report outlining Glen's needs especially for a high staff level and a very structured routine due to his complexed needs. If Glen's social worker cannot meet these needs in other care homes in Essex then Glen will have to stay where he is. So at least they are on our side so to speak. :-)

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That's good Jeanne.

 

I hope that the best possible outcome is the result of all this, I hope they don't lose sight of that so that Glen gets what he needs to have a happy and fulfilling life and feels safe and comfortable.

 

Keep us posted :)

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Thanks Darkshine, I hope you are right after all it's Glen's well being that should be put first rather than finances!!

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Thanks darkshine, had a lovely weekend with Glen, he was home for 2 nights and was smiling nearly all the time it was fantastic, much more relaxed than he was on his last visit home :-)

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That's great!

 

What sort of things do you do? I remember you said Glen likes food, and did you say something about sorting things?

 

I'm glad he was more relaxed this time - he's had a fair amount of disruption over the last month or so hasn't he (with storms and moving around and stuff) has that all settled down a bit too now?

 

Best

 

Darkshine

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Hi yes things have settled down again, Glen is getting used to his new kitchen and living area now at the home. Glen's moods do go in spells though regardless to the situation. For instance next time he comes home he could be completely different again and be anxious like the last time he was here so with Glen you just never know.

 

When Glen is home we don't do that much to be honest, we just let Glen relax and watch his favourite dvds. He does enjoy threading shapes, so Glen and I do that when he's here, he also likes putting puzzles together so we do that to. Glen does love his food so we have picnics either outside or in depending on the weather, his sister comes round and we all enjoy sharing out the picnic food. :-)

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So when you get Glen in a good and relaxed mood you have to make the best of it and really enjoy it...

 

In the past, my moods seemed to have no rhyme or reason to them - a good thing could upset things just as much as bad things - it must be hard when Glen is going through his bad times if there's little you can do about it - I used to have to work my way through them, but it was difficult as it can be so bad it just crushes you - it was worse when I couldn't communicate things after this regressive period of time - so it must be hard for Glen, and for you too cuz you obviously want him happy.

 

I'm glad things have settled down for him though, and it's good that he's exploring different parts of the home (always better than staying in a bedroom - bedrooms can be nice and safe but it;s restrictive isn't it...).

 

I don't think it matters that you do simple things together like threading things, puzzles, picnics and DVD's - it's what you both get out of it that is important - I think quality is better - it doesn't matter if other people think that what you do isn't much - so long as you and Glen are happy with it (when happiness is possible).

 

I get pleasure from simple things too - I can understand why he gets pleasure from puzzles and threading things - cuz it can be calming and you can see something building up - it's like a cause and effect thing - it can be satisfying make you feel good.

 

What sort of things does he like threading?

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Hi darkshine, yes I agree I don't think it matters if you don't do that much as long as Glen is happy thats the main thing. Glen likes threading shapes on strings and coloured cotton reals, coloured buttons (from ELC). Glen also likes colouring pictures in and car rides, he likes the motion of a ride in a vehicle, but doesn't like getting out anywhere just wants a continuous ride! I've heard that it could be a sensory thing? It could be that it stimulates him?

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Cool - I used to like making knots when I was about Glen's age and a little younger, I kinda get why he likes threading things ;)

 

So long as the environment is right in a car (ensuring that I don't get travel sick) I quite like sitting in the car being driven around, I like watching stuff out of the window, and I like going fast :lol: I wonder if Glen feels something similar this too - but I also wonder if there's an element that is similar to a younger child cuz some kids really seem to settle in the car, the motion and stuff moving past the window seems to settle them - and I don't mind the feel/sound of the engine, it can be soothing, and I quite like hearing it accelerate through the gears too.

 

It could well be a sensory soother for Glen :)

 

You know what? I feel fairly safe from people and other stuff in the car, compared to how I feel when I'm outside somewhere - a car is like being in a bubble that mutes the outside world - but you get to see it all through the windows don't you? Maybe Glen likes that too - when you stop and get out - the world is waiting right there with all it's noise and surprises.

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Hi darkshine, yes I agree with you I to think it's a sensory issue. It makes sense that Glen likes being in the car as he feels he's in a kind of bubble from the outside world but once it stops then Glen is unsettled once again and acts out so to speak at the outside world. It all makes perfect sense thanks so much for your comments darkshine :-) One thing In your opinion, do you think Glen will 'change' a bit as he gets older and will be more accepting of the fact that when a 'ride out' ends he has to get out without becoming agressive.

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You are welcome Jeanne - I think that sometimes there are similarities with people on the spectrum and I'm glad that my explanation of things makes sense when you look at how Glen might feel.

 

One thing In your opinion, do you think Glen will 'change' a bit as he gets older and will be more accepting of the fact that when a 'ride out' ends he has to get out without becoming agressive.

 

Just saw your other topic so I'm gonna leave change for there (I'll reply later to that) :)

 

 

I think transitions of tasks/events is difficult for a lot of people on the spectrum - and more so when it's something a person really enjoys that has to end. It makes sense that Glen would probably let you drive forever lol (unfortunately not possible) and so it's understandable that he finds the end of that stressful.

 

If Glen's developmental position is in a very similar place to a young child (I'm sure you said around age 3 in many respects) then I would base any attempt around that.

 

Young children can have both a simplicity and complexity to them, simple things can make them happy, just as they can cause a highly negative reaction.

 

I wonder if some type of countdown could help him - you might have to be inventive with this as everyone's different and it would have to work for Glen.

 

If he listens to you, you could make a story out of the route home, like a countdown that shows him what is going to happen next - this could take a while to put in place, to get him used to it, you could also end up talking to yourself for many drives - but I'd consider it worth a go.

 

You could plan a certain route home and using that route to let Glen know that this is the way home, ideally it would have landmarks on it that might interest him or something that catches his attention. So if there's things that are similar to the pictures on his puzzles, places that sell food he likes and pointing out that the food is home, anything that might look like the things he threads, telephone wires look like string, round things look like beads etc, or things that are in the pictures he has coloured in, or his favourite dvds.

 

I'd limit this to about 6 or 7 things and then make it into a story - like: We are on the way home now Glen, Look, there's the wire that looks like your string, and there's the shop that sells your favourite food (make sure that whatever food you say is at home just in case he fixates on that!!), like turning the end of the drive into Glen's story.

 

By using the world as a series of visual reminders about what you are doing and what is going to happen soon, you could insert things into his story - but to make it into a really good thing - using a calm yet upbeat tone of voice - like people do when they talk to a younger child - and saying the exact same story every time - I'd also consider using an element of bribery here too, so that Glen gets to do his favourite thing when he gets home and letting him know that it is waiting there for him as you get real close.

 

If this kinda thing works with him, it could still take a while before that gets set in, because he visits weekends, it really could take some time for it to become routine for him due to the break in seeing you and going for your drives. And I think you'd need a pretty large amount of positivity about the countdown to make it sound like a great thing - but not excessively great cuz that can be of putting (and that can be hard to maintain when you get tired or stressed - it isn't easy to have never ending calm-ness or enthusiasm!).

 

Sometimes, when I have a countdown for a change of task I can get stressed to try and control things, if Glen does this I would still try a while longer to see if he can grasp the idea and if he can start to see it as a good thing - things like him realising something good comes at the end could take a while to set in as an idea - but if he can realise this, it could be a powerful tool to help him.

 

If this is too complicated to start off with (the idea really depends on Glen engaging or at least listening to you and if he blocks you out it would be difficult) I'd consider using something like a DVD or CD to time the drive or the last bit home so he knows that when the music or film ends, so does the drive (this could require some seriously working out of travel times on your part - could be an olympic sport in itself lol).

 

Another thing you could use is the things he threads (if he fancies threading things in the car - could be an issue if he drops something and can't reach it) but you could fill up the string and when it's full the drive ends - again - would depend on you being able to pass him things periodically and him playing ball by actually threading them - then again - he might decide to throw them everywhere because if the string is empty it means you drive longer (always think of pitfalls for ideas before trying anything!) - just talked you out of that idea didn't I? lol

 

If you do try anything, use your imagination and your knowledge of Glen and what he likes to your advantage - I think simple is best because it's easier to repeat - the ideas I've suggested are just ideas, and they don't have to be complicated ones, just something that can catch his imagination and that makes sense to him, and something that can be done over and over for a time - so don't pick something that will drive you nuts after a few times.

 

I think countdowns and rewards can be good motivators - but they could take a long time to clear and fixed in his mind - it also might not - who knows? He might grasp the idea straight away if it really appeals to him, I think an element of distraction can be used with the next task to help him switch tasks, and also some degree of bribery used in a positive way.

 

It's like balancing things off - if the drive is really valuable to him, then whatever you use as a strategy would have to be worth more, it has to be good enough in his eyes to make it worth getting out of the car and moving on to the next task, and ideally something so good that he does it with less fuss and focuses on the next thing rather than getting locked into what is happening now and his frustration of an enjoyed activity ending.

 

Cuz lets face it, it isn't just people on the spectrum who can get ratty when they are doing something they really enjoy and then have to do something else just at the point they were loving it - and we usually change tasks with a better mood if the next task has something about it that is equally good.

 

A while back in another topic about something else - someone said "what's in it for me?" and I think that's a good question to use - "what's in it for Glen?" why should he change tasks? And I think that can be used to your advantage. The drive has a lot of things in it for Glen, he obviously finds it calming, it gives him some degree of controlled stimulation in a safe way - and that can be really valuable to him, whatever you try has to fit around that and has to appeal to him on a level that at least matches the value of the drive - or something that is worth much more.

 

I wouldn't rush into doing anything on this, cuz there's no point trying something and then realising that it won't work or that it can't be done consistently - I'd sit and think really hard about it because when you are in the car you have to concentrate on the road too, so it can't be too distracting or dangerous (like him throwing beads or stuff - bad idea that one lol), and anything you do has to be something that isn't going to drive you crazy in 6 months time (like the same DVD played a million times), because I sense that for now at least, that if Glen finds something he likes, there could be a hell of a lot of repetition required, so in the name of consistency you have to try things that you know you can do over and over too - it has to work for both of you to work I think.

 

Don't know if any of this gives you any ideas at all - but I hope it helps.

 

Best wishes

 

Darkshine

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i like your ideas darkshine and also like to give insight into how other autistics think and feel.

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I also had a visit from a guy from connexions regarding doing a LDA for Glen, but as there is no point in Glen receiving education beyond next July he said it is not worth doing an assessment because unless I agree to Glen having further education an LDA isn't necessary and he also said it is highly likely Glen will be placed back in Essex next summer in a residential care home. I do not want to put Glen through more education when I know it has never worked for him over the years, School has always been the one thing that has made Glen the most anxious in his life. All Glen needs is life and social skills, he has progressed a lot in these areas and I hope he will continue to do so.

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Social and life skills are kinda a whole field of education by themselves - definitely involves a learning process... but I bet that's not what everyone else means by education :rolleyes: do services even exist that do that kinda thing for someone Glen's age? To help him with life skills and social skills?

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Hi darkshine, thanks for your reply. The connexions guy said that education involves academic as well as life skills etc. and as Glen isn't progressing in academic skills then there is no point him continuing with education. I've put him through so much during the school with getting him to school when I know it only made him highly anxious and aggressive it's not fair on Glen to have to go through it any longer than necessary. I just have to make sure that a very suitable and structured care home is found for him for next year.

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I just have to make sure that a very suitable and structured care home is found for him for next year.

 

Sounds like that's where to throw your energies Jeanne - there's plenty of time for education, Glen is still a young man, I think if there's any progress to be made on coping strategies and life skills, then that's the best way to proceed, and who knows, maybe education can come into things later, it isn't like it has to be abandoned anyway is it? It's just "formal" education - there's other types of education :)

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Thanks for your kind comments darkshine, I will keep you updated as to what happens. :-)

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