Lack of motivation in teenager

[Kathryn]

My 16 year old daughter has been out of formal education for a exactly a year now, and our battle with the system is still raging. We have just registered our second tribunal appeal - it seems that another joyful Christmas awaits us - if we pursue it that far .

 

Our biggest problem at the moment is L herself. She has some health problems at the moment, symptoms similar to ME: ie extreme fatigue and painful joints. Unsuprisingly, she has no drive to do anything in the way of formal learning. On Friday she had a discussion with the connexions adviser who was trying to tease out from her what her ambitions were. She can't think hypothetically at all though: when she was asked what she could see herself doing in the future she answered "I don't know. The pictures in my head are too big". She couldn't say anything about what she would be interested in studying, she only talked about Star Wars.

 

She desperately needs support and guidance. But thanks to the PC approach that the lead must come from the child, nobody is prepared to tell her anything or put any choices in front of her. We are hoping to apply to a specialist FE college for next year: she is saying she doesn't want to go, and of course hers is the voice everyone will listen to. The Connexions advisor has said she can't make an application without the young person's agreement. What L would actually like to do is remain at home, completely isolated from everyone, pursuing her own interests, no challenge, no pressure. She has adopted the identity of a physically disabled person and uses it as a reason to opt out of everything, I think to hide her fear of social contact. I feel that the services who are supposed to be helping us would be only too pleased to let this happen, citing her health issues as a reason for doing nothing.

 

I just don't know what to do with her. Some of the steam has gone out of our fight with the educational authorities because I don't know what we're fighting for any more. No one really wants to provide for her needs anyway and she will collude by saying she can't do anything. I worry so much about the future - about whether our family will withstand the strain of looking after her all day every day, and what will happen to her when we can't look after her any more. At the moment it seems very unlikely she will ever attain any degree of independence. It's hard enough for those who try and she doesn't even want to.

 

Not sure if this post makes sense - just had to try and get it off my chest. I'm feeling really depressed about this situation at the moment - there's loads of advice available if one is battling the LEA but this is a very personal battle with my own child and I really don't know what to do. I feel guilty for not having all sorts of creative energetic plans for educating and entertaining her all day but to be honest, I'm just too burnt out. I can just about manage to get the dinner on and that's it.

 

I just wondered if anyone else with an older teenager has had to cope with anything like this? Thanks for listening anyway.

[annie]

Hi Kathryn <'> ,

 

I have the same worries about Alex (16). He's doing Education Other Than At School now, but he's not very motivated.

 

Alex has been writing raps/songs for a couple of years now, it was suggested to him by his physcologist as a way of getting rid of his anger. Now though, he seems to believe that he will get a recording contract somehow and that'll be it.

 

A lady from the Home Tuition Service tried to get Alex some work experience at a local gym, but Alex said he wouldn't go. Luckily, it couldn't get sorted out, so we didn't have a problem, but what worries me is that because his song writing is his ambition/obsession he doesn't want to do anything else.

 

Alex keeps saying he wants to get a part-time job, but wont even go and ask anybody if they have any vacancies. His social skills have got a lot better compared to what they used to be, but he couldn't manage job seeking.

 

I feel a bit lost about the future too Kathryn.

 

Annie

<'>

[Flora]

Annie and Kathryn, I'm no where near that position yet (though it isn't too far off... my AS son is 11... he'll be 12 in November). I've been worrying for a long time about these issues you two have brought up.

 

In September I went to hear Wendy Lawson speak and it's made me feel a whole lot better and more confident and hopeful for the future. She was talking about her AS son who has recently just started a catering course. He's 21 but she actually views him as 16 or 17. She said that you really do have to take at least 4 years off their chronological age for development. If you do that (according to Wendy) it saves you a lot of worry and grief about what they should be doing if they were NT and what they actually are doing. To me what she was saying was that we should slow down the growing up process. With Wendy's philosphy your children are developmentally 12 (please don't be offended by me saying that... I know you'll understand what I mean). The bottom line is that they do get there, it just takes them longer.

 

What does it matter if it takes them until they are 19 before they get their GCSE's? And then if it takes them until they are 21 to get A'levels or similar? Many people change careers anyway so it doesn't matter if our kids don't embark on their first career a bit later than others.

 

<'> Lauren <'>

[annie]

Hi Lauren,

 

After all of the education mess that we've been through, one thing that I've learned is that exams aren't important now.

 

After 16, getting help is even worse than dealing with LEAs

 

I would say that Wendy Lawson is right about age development. It's sometimes strange though, for example, last night we went out with friends for dinner and Alex was telling our friend's son (who's a year younger) how he shouldn't get mixed up with 'bad kids' and not to smoke and things like that. He was sounding like me and hubby He kind of switches between 12 and 40 years old in a split second.

 

and no, you haven't offended me

 

Annie

<'>

Edited October 16, 2005 by annie

[oracle]

Kathryn does the thought of continuing her education scare your daughter? I can only speak as a rank outsider here and apologise for doing so - but does your daughter need some space to learn to be herself and about herself. I can only speak from my own experiences but David only began to relax and take an interest in life again when he realised that his education was no loner an issue. Does that make sense. How can any child have aspirations and hopes when they are probably fighting an inner turmoil which is asking them 'who am I' for most of their waking days.

 

I feel that it is so much harder when the dx comes late. I agree with Wendy Lawson I try never to think of David as being 18. I know that inside he is probably 12 or 13 and would I be pushing an NT 13 year old to chose a career pathy at that age. Only the day of his eye test he was asking me to enquire at the local College about a ICT course. He has never ever mentioned this before. It's a long time coming but it came.

 

I have a friend whose AS son is now 21. His Mum has had the devil of a fight on her hands for years now. She is a memebr of our Campaign Group and what she has endured is almost unbelievable. I know that she has been driven to fight every battle for her son. But that same son is now ringing me and telling me that the fighting has only left him feeling that he was without his parents. He feels that they spent so much time fighting the cause and they forgot why they were fighting and that was for him. I know his Mum only wants the best for him but if even he does not know what is best for him how can she? David often asks me now if what i am wanting is for him or for me. While it hurts I now try to step back and take a long hard look.

 

I am sure that we have another Mum on a list whose AS child also has ME so it's not uncommon, infact there are lots of of adults with AS who have auto immune illnesses. I also know some really good AS adults who have had serious selfworth issues. If ever you wish to speak to them then let me know.

 

If I have spoke out of turn I apologise.

 

<'> Carole

[mikesmum]

I have an 11 year old - he's been a teenager since he was three! ;-) I was hoping that we would have an easier time in his teens as a result but that was before we discovered AS!!

 

I know what you mean about feeling burned out, Kathryn. It's the uncertainty that does it. Standing up for them and then discovering that they've gone down some other path so you're left with egg on your face and absolutely no credibility any more!! My elderly mother is AS and does it to me, too!!!

 

One thing I do now is to push on beyond the resistance and make it clear that I won't let him give up. I've given up so often in the past on the basis that (fingers crossed) he'd grow out of it but now I realise everything is so much more complicated. And if I keep going long enough, he finally seems to reach some kind of breakthrough and we start to coast along. But it's exhausting and takes up mega amounts of time.

 

Isn't it mainly fear that they are expressing? So the answer is : how can we help them take it step by step so the thought isn't so hugely overwhelming. Small steps, testing, trying things out. They prefer to stick with the familiar but, as I was taught when he was a toddler, we are the adults and we do have more experience and we know more about the world. If we have confidence in our own decisions and perceptions then we WILL help them reach the goal.

 

I'm a wreck most of the time, but that's my 'take' on it all.

 

A thought has just occurred to me : are autistic/AS kids deemed responsible adults in the eyes of the law at the same ages as NT kids??

[oracle]

Paths were made for walking and it is not always our right to dictate the direction of that path. We are their parents and not their keepers. We do not always know what is best for them and it is wrong to believe that we do.

 

Sorry but pushing a child too hard can lead to breakdown - I know - not allowing that child to recover from the breakdown can be a big mistake.

 

4% of adults with ASD are in full time employment - what are we pushing for? For our children to experience yet more faliure.

 

I do not let my 18 year old vegatate but I would never dictate.

 

My opinion of course.

 

Carole

Edited October 16, 2005 by carole

[barefoot wend]

Kathryn

 

I have to agree with much of what's been said on this thread.

 

My thirteen year old seems very unmotivated to do much of anything. I also try to look at it all long term. I try not to put any time scales on it all and think we'll get there eventually ....though God only knows when that will be!

 

In the meantime I try to push the boundaries ever so slightly every now and again just to extend the comfort zone.

 

Wasn't it Tony Attwood who says that it is often in their twenties of thirties that AS people begin to feel more comfortable with themselves? - or have I made that up?

 

What I do know is that we're in for the long haul.

 

Take care

 

Barefoot

[Kathryn]

Hi all and thanks for your replies. It's comforting to know others are in a similar boat.

 

I do think it is fear that stops L from wanting to do things although she will continually argue that she's not scared of people, she just doesn't want to be with them, and she's not scared of doing anything, it's just that her hands won't work properly, etc.

 

I'm not too hung up on whether she gets her GCSE's in the next couple of years or whether she gets them at all, as you say Lauren, it doesn't matter, she can do them later if she wants to.

 

Carole, don't worry about speaking out of turn, I'm always grateful to have your views especially as you have a child at a similar stage. I agree with what you say about the later development - L seems like the same age as her 8 year old brother who she gets on with very well. You say you don't let your son vegetate but you don't dictate - this is the constant worry I have: am I expecting too much from her, am I expecting too little.. I feel she is vegetating but maybe that's just my perception. We demand very little from her. She has no friends except one or two online ones, and we are getting very little support right now so we have to provide all her stimulation and entertainment. Although she tires easily she does want to go out and do things. She's not at the stage where she can just launch into an activity with other NT people - even if we could find something she would do. From my point of view, I find taking her out hard work, and emotionally draining as she is so obviously a child with "special needs", and I'm painfully aware of the stares which we didn't used to get - she used to make heads turn for a different reason.. Perhaps if we'd had this situation from an early age we would have grown immune to it, but it will take us a while to grow a thicker skin.

 

I suppose it's more my problem than hers - how do I deal with her during this long recovery process? I'm exhausted fighting all these battles and I find being at home with her all the time very difficult - I enjoy the few hours I am at work but then I feel guilty because I'm not at home. I just need for her to be somebody else's problem for a few hours - I have a very good friend who comes for one morning a week and does things with her - far more than I ever would - and she loves it. I just need more of the same - something to relieve a bit of the burden from us and keep her intellect ticking over until such time as she wants to re engage with formal learning.

 

The whole situation is having a major impact on the rest of the family - we have missed out on a few weekends away with friends because L doesn't want to go anymore and she can't be left on her own. This has caused major resentment. Her brother deserves a life too - he loses out because everything revolves around her needs.

 

This is a real whinge - I'm sorry. I feel like the most awful parent in the world.

 

K

[mikesmum]

I found Donna Williams' thoughts about Exposure Anxiety very useful.

 

I've found with my son that every tiny experience, everything he fights against, has a key. If I keep knocking on the door and keep him with me metaphorically until I can find the right key, then he is suddenly off and running. I've asked him if he can start looking for a key on his side of the door. haha : He said 'but there won't be room for both keys - what do we do then' LOL "Well, whoever finds the key first will be able to open the door." and he seemed to quite like turning it into a competition!! ;-)

[mikesmum]

Hi Kathryn - Looks like we were posting at the same time.

 

You sound completely burnt out and need a big rest - most especially a big rest from guilt. (Hugs)

 

I'm just wondering if your daughter gets her own way at the expense of the wishes of the family cos it's too tiring to do otherwise or because of the guilt or because she is more deserving?

 

In every family there is give and take - so what about striking a deal? One weekend she chooses what the family does (eg stay at home) but then each member of the family gets a weekend to choose. I hope you choose a weekend away just for yourself. :-) That's the other thing I learnt - like in an airplane, you give yourself the oxygen before you give it to your child - you have to look after yourself first otherwise you can't look after anyone else.

 

It helps defeat the guilt feelings once you realise that looking after yourself is actually looking after the person who needs you most. So enjoy your time at work and make the most of it - just as our bodies repair themselves most in sleep, I think that allowing ourselves to forget the angst for a while helps other bits of us to get some repair, too. I'm still working on this for myself. :-)

 

{Hugs}

[Kathryn]

Thanks for those encouraging words, mikesmum <'> .

 

I feel like a heel for moaning so much - I can at least leave the house on my own, go to work and do other things for a while and I know many on the forum don't have that luxury.

 

The problem with my daughter isn't so much that she WON'T do other things - she probably would go out with us if she had no other choice, but it would cause huge amounts of stress for her and the rest of us. For example: we used to love going into London as a family but now L finds train travel, crowds and noise too traumatic, so we just don't do it. You're right in saying it's just too tiring. An overseas holiday would be out of the question - the stress of flying: (luckily we can't afford it at the moment so it isn't a big issue!) One day she may be mature enough for us to leave at home while we do these things - I hope so as her brother is so adventurous and would love to go somewhere like Disneyland one day, whereas that would be L's room 101.

[tracey]

Hi kathryn

I can relate to what your saying

my daughter is almost 14 and she seems to want to go out and do things

but due to things not always going to plan or lots of little things going wrong

she sometimes just gives up which annoys her terribly and gets really cross

at herself saying she hates the way she is.

I always find myself saying I cant wait for her to leave school as every morning

is stressful actually getting her there but I can understand your position and feel

for you,

T

[Kazzen161]

>>We are hoping to apply to a specialist FE college for next year: she is saying she doesn't want to go,

 

Have you been to see this college? Do you really believe it will suit her?

 

If so, does the college have a CD or tape or web-site about it, that your daughter could watch? Try to persuade her to go and visit the college to see what she thinks - no pressure on her to go - just to look around - she may find that she likes it.

 

We have just been to see a specialist FE College today. Yesterday my son said no way - today he says he would like to go there!

 

Karen

[Kathryn]

Hi Karen,

 

Her dad and I have been to see the college and liked it, and we are in the process of trying to arrange a visit for her.

 

She is just so against everything - says she doesn't want to be "institutionalised" by going to a specialist college. Our fear is precisely that - if she doesn't learn some independence she will end up in an institiution - and not an asd friendly one either.

 

I know my limitations and being with her 24 hours a day every day is very bad for both of us. She argues all the time - a bit like a typical teenager. But at least a typical teenager would stomp out the house and go and visit a friend to have a moan. She doesn't have that outlet.

[mikesmum]

Lincolnshire Autistic Society has just produced a DVD which show ASD children and teenagers and the choices they have made. She will see positive experiences of specialist colleges for teens if you can get hold of a copy.

[Kathryn]

Thanks, mikesmum: I've done a quick search and found one called "winning through" - is this it?

[mikesmum]

Yes, I think that's what it's called. If it's published in 2005 it must be the one. Half an hour passes quite quickly as it covers every age group but you see a young man at 6th form college who feels so much better for being there - and several people say what a difference it has made to him. And there's a young woman who reads a book she's created, very lively, very communicative and you realise that she's living independently. And a super headteacher who makes you feel good and very hopeful just cos he's clearly a great head and an all-round warm and cuddly person!!! Every school and every college should have just such a head - relaxed and kindly and understanding.

[Guest hallyscomet]

Hi,

 

I had a similar problem with my child and found the school system sometimes doesn't do them a lot to help their self esteem.

 

I am in Australia, I had hopes my child would stick it through and go to Uni, but the stress was too much so we pulled out.

 

Seeing a Careers Counsellor at the College and a Special needs counsellor at the local college they came up with a program that my child liked and is now pursuing.

Perhaps if you had a one on one with the counsellor at the college and explain what happened to your daughter at school they will help you surely. They did for me over here.

 

Once I sat down with my child and found a few things they never thought of as possible for them, it becomes clearer, I watched my child go from where you are now to a new confidence and it can be a slow process, another thing is I had my child attend counselling for a year with a counsellor that could really relate to kids this age, this had amazing results.

 

Just remember you are doing a great job...and they love you even though they may not show it sometimes....There are times where we have to step back and let someone like a counsellor help pave the way for them..

 

All the best

Hailey

[Guest hallyscomet]

sorry entered twice

Edited October 23, 2005 by hallyscomet

[Malika]

Hi Kathryn

 

Just another advice it may be useful to have an health check for her you talk about ME what about thyroid problems or anything else making things even more challenging for your daughter.

 

Hope things get better soon.

 

Malika

[Kathryn]

Thanks for all the replies,

 

Malika, she is having an appointment with a rheumatologist in a few weeks - to investigate her hypermobility, so we'll see what that brings up. She has also been seeing a physiotherapist who has given her some strengthening exercises. Her ligaments aren't strong enough, so her muscles have to work extra hard to hold her together. This causes a lot of the fatigue, apparently.

 

Hailey, interesting to hear of your experiences in a different system. It's great that your child found soeone they could relate to. We have yet to find that person, L has rejected all sorts of therapy so far but she will engage with people who approach her in the right way, so we keep hoping. It would be great for us and for her if she had a few more people in her life she could respect and talk to. She is so dependent on us and she also dumps all her bad feelings on us (as all teenagers do with their parents I suppose). It's extremely tiring.