Frustrated

[Lisa40]

Just need to let off steam. My daughter had a dentist appointment that she has known about for weeks. I specifically made this for a later time 11.45 so that I could give her time to get out of bed and get ready and used to the fact that we were going out. Started to wake her up at 9.45 (we needed to leave at 11.30) and at 11.15 was still trying to get her out of bed. I tried screaming, pulling off the blankets and all I keep getting is that she didn't feel well (which is a regular occurrence when we need to go out for something). In the end I had to go without her, but this is becoming the norm and she is getting so reclusive I just don't know what to do. We had a conversation about being reliable and not letting people down and what appontments are and how they work but to no avail. She is just happy in her secure little environment.

 

I just wish that she would accept that she has a problem so that we can help her. Am so frustrated.

 

Lisa

[Mandapanda]

Hi Lisa

 

I may know exactly how you feel!

 

My son is 12 and had been good at going to appointments even though he wasn't attending school, but now he won't come to CAMHS with us and he wouldn't come to his dentist appointment. He asked why he had to go when he didn't have a problem, so I explained why but he still wouldn't come. It's very frustrating.

 

He has had to have a good enough reason to go out (shopping for computer games, library for computer games/books/dvds). However, out of the blue, in the holidays he came for a walk with us in the forest - the first time he'd been just for a walk for about 3 years. During the holiday we got him out of the house about 4 times, whereas it was about once a month. He also had a friend over who he hadn't seen for nearly a year and had been to anxious to invite before.

 

I don't yet know if I will get him to the dentist or CAMHS, but he is at least talking about eating better and doing education in the future, so we are getting there.

 

With my son he was very depressed and unhappy and was doing whatever he needed to protect himself from situations he couldn't cope with. He would become withdrawn, very cross, and if pushed even violent. He was just a frightened little boy who felt safe at home. It has taken his mood improving to see the above changes in him and also for him to start to talk about things like school - at one time he would storm off with his head in his hands if we even mentioned school. He is quite an anxious child anyway, he worries and thinks too deeply about things, but the depression made things overwhelm him and made it impossible for him to cope with life outside the home and involving other people.

 

If you're daughter is having trouble going to school you need to get in there and get support put in place as a matter of urgency. I wish I had realised what was happening when my son started saying he felt unwell all the time, rather than the problem escalating to the point where he has not been to school for almost a year now.

 

I hope you can get to the bottom of your difficulties, but it may take a lot more time (and energy) than you might think at the moment.

 

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[Lisa40]

She is now 16 and hasn't been in school since September and the support has been very limited. We only got the official dx last year and she is in denial of having AS. CAMHS have been as helpful as they can be this time round - she was failed dreadfully by them when we went the first time when she was 12 and in the end I had to get some help privately. Unfortunately, she won't speak to anyone at CAMHS, neither first time round nor this time, but they have been very supportive with my husband and myself just by listening to us, but have not really been able to put anything into place for her because of her age. They said that once she reaches 18, then all the support and help is available as an adult but between 16-18 it is a funny age with not many facilities available helpwise. She has always been very anxious and now we understand why and she feels secure at home. When we have had home visits by services she has had a total meltdown as her sanctuary has been violated. The problem is because she is very articulate and can reason very well, when she rejects the help (she was finally offered home tuition last month for 2 months until school leaving age) because her response is reasoned I am told they can't help. They don't see the meltdown that occurs after they have left. She saves all her energies into being reasonable for the meetings and then takes this out on us afterwards.

 

Strangely enough she went to the orthodontist on Tuesday no problem, but that could be because she was having her braces removed. She is due back tomorrow to have her retainer and it will be interesting to see if she makes an effort for that. I have told my husband he may have some problems tomorrow (as I can't take tomorrow off work) as he is dealing with the orthodontist. We are also due a visit from Connexions (which again he is dealing with) and I imagine she will be on overload tomorrow.

[Mandapanda]

Hi Lisa

 

When children leave school, even if they are going to college in September, there does seem to be a gap in support. Connexions are a good bet. They provide counselling (if/when she wants it). My eldest son is totally in denial but he is a very strong character so he hasn't really had too many problems. He's just happy with himself and is able to ignore negative outside influences.

 

Being a teenager can be a confusing and difficult time for anyone, it's a time for low self-esteem and lacking confidence, and of course no-one wants to think there's something 'wrong' with them. Also being a teenager can make people acutely aware of any differences between them and others, maybe she is all too aware but thinks if she pretends it isn't so it will go away. Does she have any talents or hobbies/interests which she might possibly not have without the AS. I like to describe AS as more of a description of a personality, and point out that without it my eldest son would not have those wonderful qualities that he does have. It just happens to come with some difficulties as well. Many NT people have difficulties of their own, hard of hearing, shyness, etc. My husband has epilepsy and we equate/compare the AS with that - it's something you can't help, it makes you who you are, you can learn to live with it and adapt your life to fit with any limitations you may have, and you may need medication to help.

 

I haven't discussed my youngest son's diagnosis with him. He's very different and will take it as criticism and could feel worse in himself. It's a job to know what to do.

Edited April 23, 2009 by Mandapanda

[Lisa40]

We were actually advised not to tell her, but the report got sent to me at home. As she kept her father's surname it was addressed to me as Mrs (with her surname) and as I get no mail addressed with that name, she thought it was for her and opened the letter, after that all hell let loose. She then went on theinternet and googled AS and saw the word autism. As my best friend's brother is autistic and in residential care with a mental age of about 13 for a man of 54 she immediately associates herself with that and even though on the psychiatrists advice we have tried to turn this into an anxiety issue, which she has, she now sees herself as labelled. Unfortunately 16 is never the easiest time anyway and with her things are more enhanced.

 

With regard to hobbies, she loves music, dance and acting and wants to be rich and famous but whilst I don't want to belittle her interests, she needs to be realistic and we do try and explain to her that she should have another career as a "backup". Unfortunately she can't stick at anything. The only thing she stuck at was Stagecoach. She had piano lessons, which lasted for a term when at school, then she wanted to try violin which lasted 4 weeks. Growing up we have had ballet, judo and tap lessons none of which lasted long term and we managed to find some 1:1 acting lessons, but even they only lasted a couple of months. She doesn't like to read, as she has visual attention problem and it has to be something that really interests her. She is good with biographies, but it has to be people that interest her and these are usually people like Girls Aloud, but I try to encourage that as something is better than nothing. At the moment we can't even find something for her to do that really interests her. As long as she is plugged into her iPod she is happy.

[cmuir]

Hi

 

Don't know what age your daughter is, but I try to encourage my son to go to appointments. We discuss scenarios, for example, if you feel uncomfortable, let me know and we can do this, this or this. To illustrate, when it comes to food, he can be picky and so I ask him to try something and tell him that if he doesn't like the taste, he can spit it out into a separate bowl and take a drink of water to get rid of the taste. Social stories with little stick men, etc can be very effective as well to indicate chain of events. It may be deemed as bribery by some, but maybe providing an incentive may help. By telling her that if she manages to visit the dentist, then afterwards you'll go to X. It's also important to talk/illustrate what will happen at the dentists - she can sit in the comfy chair (my son's dentist lets R move chair up and down, etc when I'm sitting in it so he can see that I'm perfectly happy) and all she has to do is open her mouth. Obviously a lot of reassurance needs to be given - that the dentist will only look and then do X, but that will stop if she feels uncomfortable. I took my son to the dentist and he'd sit and watch me getting worked on and then we'd leave. I think it was important that he got used to the environment, the smell, he noise of equipment, etc and could see nothing bad or painful (okay, not too painful!) was happening to me. All of that is all well and good, if you can't get her out of the house. Maybe giving her something visual such as a watch to look at might help - you need to go out for a short while, but will be back at such and such a time. Again, the social stories can be great.

 

Sorry, can't think of anything else. It's obviously something that's going to need a bit of work on over time.

 

Caroline.

[Kathryn]

I do so identify with the waking up issue. I struggled to wake my daughter up for a long time and anything which was earlier than 12 noon was a real challenge. She didn't go tho the dentist or hairdresser for 2 years - I wasn't strong enough, so well done you!

 

Does she stay awake most of the night? She may simply be overwhelmed with exhaustion if so.

 

Is there anything she would like to do or shop for, that you can offer as a bribe after the orthodontist?

 

K x

[Mandapanda]

We were actually advised not to tell her, but the report got sent to me at home. As she kept her father's surname it was addressed to me as Mrs (with her surname) and as I get no mail addressed with that name, she thought it was for her and opened the letter, after that all hell let loose. She then went on theinternet and googled AS and saw the word autism. As my best friend's brother is autistic and in residential care with a mental age of about 13 for a man of 54 she immediately associates herself with that and even though on the psychiatrists advice we have tried to turn this into an anxiety issue, which she has, she now sees herself as labelled. Unfortunately 16 is never the easiest time anyway and with her things are more enhanced.

t='256918']

 

Don't you wish you could turn the clock back sometimes?!

 

With regard to hobbies, she loves music, dance and acting and wants to be rich and famous but whilst I don't want to belittle her interests, she needs to be realistic and we do try and explain to her that she should have another career as a "backup". Unfortunately she can't stick at anything. The only thing she stuck at was Stagecoach. She had piano lessons, which lasted for a term when at school, then she wanted to try violin which lasted 4 weeks. Growing up we have had ballet, judo and tap lessons none of which lasted long term and we managed to find some 1:1 acting lessons, but even they only lasted a couple of months. She doesn't like to read, as she has visual attention problem and it has to be something that really interests her. She is good with biographies, but it has to be people that interest her and these are usually people like Girls Aloud, but I try to encourage that as something is better than nothing. At the moment we can't even find something for her to do that really interests her. As long as she is plugged into her iPod she is happy.

 

This bit sounds depressingly normal for a teenage girl these days. They don't really know what else is out there, this is splashed all over TV and magazines but it doesn't show the hard work involved behind the photos and videos. My eldest is doing English, Early Modern History (Tudors), Geography and Philosophy at College in Sept - no idea what job he could do with that lot? He's intellectual but not academic enough to do exceptionally well plus he lives on a different planet!! It's really hard to just let him do stuff when we can't see it leading to a 'proper job'.

 

.

Edited April 24, 2009 by Mandapanda

[Louisa]

Hi Lisa

 

I sympathise with you. Our daughter is exactly the same. She is 16 in July and I am at my wits end with her and don’t know what to do for the best.

 

The diagnosis CAMHS have given her is depression and chronic anxiety (I think she has AS). She has very limited social skills, eating issues, high anxieties, sleeping disorder, rigid thinking, extremely low self esteem etc. She has been out of mainstream school since year 9 and after being put on prozac, now attends most mornings at a medical school.

 

She is due to take 7 GCSE’s but has very little motivation to study. She avoids everything that she doesn’t want to or can’t face – and at the moment is doing this by sleeping and listening to her ipod (apart from bedtime – she refuses to go to bed at a normal time and has done so for years). I know what you are going through – mornings are a nightmare in our house, trying to get her up and out of the door every day. Her new rota now is to sleep when she comes home after lunch as she says she doesn’t have to think about things whilst she is asleep.

 

Like your daughter, she has very little interests. She is interested in fashion and music though, and would like to join a drama group but hasn’t got the confidence. Like your daughter, when she was younger she did ballet, dance and tap, judo & swimming but got fed up with these.

 

She should be starting college in September but doesn’t know if she will be able to face it, and doesn’t know what course to take either, and has no close friend who she could start with.

 

I wish I could give you some advice. Does you daughter have any idea what she is going to do re further education etc?

 

 

[Lisa40]

I do so identify with the waking up issue. I struggled to wake my daughter up for a long time and anything which was earlier than 12 noon was a real challenge. She didn't go tho the dentist or hairdresser for 2 years - I wasn't strong enough, so well done you!

 

Does she stay awake most of the night? She may simply be overwhelmed with exhaustion if so.

 

Is there anything she would like to do or shop for, that you can offer as a bribe after the orthodontist?

 

K x

 

Got her to the orthodontist today and my husband said he would take her out for lunch but she wanted to go straight home. Her sleeping patterns are really strange. Up most of the night, sleeping all day. She definitely suffers from severe anxiety but because she won't see anyone at camhs they can't prescribe anything for her.

 

Another strange problem is that if we have windows or french doors open, she immediately closes them and we can't talk loudly if they are open in case all our neighbours can hear our conversation. She always has her curtains closed as well.

 

 

[Lisa40]

Hi Lisa

 

I sympathise with you. Our daughter is exactly the same. She is 16 in July and I am at my wits end with her and don’t know what to do for the best.

 

The diagnosis CAMHS have given her is depression and chronic anxiety (I think she has AS). She has very limited social skills, eating issues, high anxieties, sleeping disorder, rigid thinking, extremely low self esteem etc. She has been out of mainstream school since year 9 and after being put on prozac, now attends most mornings at a medical school.

 

She is due to take 7 GCSE’s but has very little motivation to study. She avoids everything that she doesn’t want to or can’t face – and at the moment is doing this by sleeping and listening to her ipod (apart from bedtime – she refuses to go to bed at a normal time and has done so for years). I know what you are going through – mornings are a nightmare in our house, trying to get her up and out of the door every day. Her new rota now is to sleep when she comes home after lunch as she says she doesn’t have to think about things whilst she is asleep.

 

Like your daughter, she has very little interests. She is interested in fashion and music though, and would like to join a drama group but hasn’t got the confidence. Like your daughter, when she was younger she did ballet, dance and tap, judo & swimming but got fed up with these.

 

She should be starting college in September but doesn’t know if she will be able to face it, and doesn’t know what course to take either, and has no close friend who she could start with.

 

I wish I could give you some advice. Does you daughter have any idea what she is going to do re further education etc?

Hi Louisa

My daughter sounds very similar to yours. Whilst she makes friends quite easily and was always popular at school she can't maintain friendships and like your daughter is extremely rigid in her thinking and if something does wrong with a friendship that is the end, she won't try to fix it. She also has a rigid sense of injustice. If she perceives an injustice against her she wants me to phone up the parents and tell them how to punish their children. She is also a good avoider. SHe hasn't been in school since September and will not be taking her GCSE's next month. She can't stick at anything and lacks confidence although she will maintain she is a confident person. We had Connexions round today and they were talking about a programme to get her to college to do her GCSE's and whilst she pretended she was interested and she did listen and ask some questions, as soon as they went she said I'm not doing that. Connexions also have an appointment for her to attend at meeting at their office on Monday for a taster session and she is already making excuses.

 

Like your daughter, ours has no close friends or anyone to go out with or start college with and R is very reclulsive. Home, computer and iPod are her life at the moment.

 

At least I don't feel so alone knowing that this appears to be the norm for the teenage years. Am hoping that as she gets older and through adolescence, which seems to be heightened by AS that perhaps she will be able to cope a little more with things.

 

Lisa

[Diane]

Hi guys

 

I know how you all feel, getting our son out of the house in impossible. We have the dreaded MMR boosters to deal with in May. I am so afraid to even mention it as he will flip and refuse.

 

However he does go to school now after three and a half years of only having 20% attendance but that is because he goes to a special school for kids on the spectrum (High Functioning) Years 10 and 11 only. Thirty children in the whole school split into four groups so nice small class sizes. I feel we landed on our feet when we were offerred this placement. it was hard work getting him there but once we did he loved it!

 

Is there any support in your areas for teenagers with ASD. There is not where I am and i was thinking of setting up something myself. Any ideas.

 

sorry Lisa i did not mean to high jack your thread.

 

 

[Lisa40]

Hi guys

 

I know how you all feel, getting our son out of the house in impossible. We have the dreaded MMR boosters to deal with in May. I am so afraid to even mention it as he will flip and refuse.

 

However he does go to school now after three and a half years of only having 20% attendance but that is because he goes to a special school for kids on the spectrum (High Functioning) Years 10 and 11 only. Thirty children in the whole school split into four groups so nice small class sizes. I feel we landed on our feet when we were offerred this placement. it was hard work getting him there but once we did he loved it!

 

Is there any support in your areas for teenagers with ASD. There is not where I am and i was thinking of setting up something myself. Any ideas.

 

sorry Lisa i did not mean to high jack your thread.

I haven't really found any support groups locally but am quite new to all this as we only got the official dx last year. The NAS is running a seminar on Managing Anger in Young People with AS. I went on the course in Birmingham and made contact with some people there in the same situation but it is difficult for me to get to Birmingham, but they are running the same course in Derby in a couple of months time and I have asked if I could attend that one so that I could possibly meet people in the same situation that live locally.

 

[Mandapanda]

Another strange problem is that if we have windows or french doors open, she immediately closes them and we can't talk loudly if they are open in case all our neighbours can hear our conversation. She always has her curtains closed as well.

My son doesn't want windows/doors open but that's because he doesn't want insects coming in, even flies (though he says he's not scared of them or anything). He has curtains closed and light off all day, and curtains closed and light on all night!

 

He came to a car boot sale with us yesterday (in a field!!) which was good.