Agrophobia + anxiety

[JeanneA]

I have come to realise that my son Glen 16 is suffering with agrophobia and anxiety, due to how he acts. If the prozac works then it will help him, but what if it doesn't it and he's only been on the meds 2 weeks and I've heard it takes around 4 weeks to notice any real difference.

 

At the moment Glen doesn't want to go anywhere, i.e. clubs that he used to attend, respite, school. I just about get him to School as a taxi picks him and brings him back, if that didn't happen then I wouldn't be able to get him there. Glen only goes to respite if he goes from School or they come and get him, once again I cannot get him there. Glen refuses to go hits himself constantly, hits out at me, runs to his room, etc. So I 'give in' and keep him at home for a peaceful life basically.

 

Not only is there the problem of going anywhere, the other thing is, for the past number of weeks Glen has come in from School wanting curtains closed in living room and light on. If you don't do this he will then kick off etc as I explained above. He then wants to lay in his room for a while, even at weekends when there is no school. If I don't 'give in to him' then as I've said he gets really aggressive. So basically I whats necessary for a quiet life. Glen even asks for curtains closed & light on in living room at weekends at the same time of day (3.45pm) as he does in the week, so its not just School days when this occurs.

 

You are probably thinking I am way too soft, which you are right but I have tried NOT to give into Glen and have suffered the consequences of this.

 

Glen is still waiting for this mental health assessment, which he desperately needs. He looks and appears a very depressed, anxious individual who needs urgent help.

 

So if you were me and please be honest would you do what I do or would you take him to clubs where he doesn't want to go, is clearly anxious etc? I look at it like this if it was me and I was so anxious about something that I didn't want to do then I wouldn't do it. Anyway please I welcome your comments on this.

Edited May 16, 2010 by JeanneA

[lisac]

Jeanne , in my opinion you are not too soft . You have tried everything you can think of .

I would do exactly what you are doing, letting him just 'be' and taking off all the uneccessary pressure.

Trying to make him as happy as he can be when he is clearly struggling is priority. Hope you hear soon about the mental health assesment, x

[call me jaded]

As he's still going to school I think you can 'give' a little on everything else and give him some down time. And he is older, so should have more say in what he wants to do. All you can do is give him choices as much as possible and some gentle encouragement.

[JeanneA]

HI ladies thanks for your very welcome comments you have both made me feel a lot better. I did think that maybe I was being a little too soft/giving in etc but after what you've both said I think I am doing the right thing. Mind you it is a pain having to close curtains by 4pm each day!! but heh ho its not the end of the world after all.

[Tally]

I think you do need some support on this, because letting him stay in and close the curtains is not a good long term solution. ANxiety is caused by the person having fears that get blown out of proportion, and the usual treatment is to encourage the person to do the thing they are anxious about and see that nothing bad happens. It's clearly not something you can manage on your own, since you are not a doctor, but I do think you need to ask Glen's doctor for advice on how to handle this . . . maybe it is something that will come from his mental health assessment.

[JeanneA]

Hi Tally yes hopefully it will come from the mental health assessment. The psychiatrist put him on the prozac in hoping this would help but as with all medications it takes a long time to work.

[JeanneA]

Regards the curtains and light it isnt as easy situation for me, I do try not to 'give in' but I always do in the end so that Glen is calm again. Also my husband isn't able to cope when Glen gets aggressive, I feel stuck in the middle many a time. My husband is Glen's step-dad and has always struggled where Glen is concerned so I do feel very much like a single parent where Glen is concerned. I do everything for Glen always have even when I was with his Dad. I know I've done too much over the years and regret that now, but I just wish Glen was like his 'old self' again I really do.

Edited May 16, 2010 by JeanneA

[baddad]

Hi Jeanne - I can understand your reluctance to meet Glen head on, and agree that allowing him downtime is perfectly reasonable and sensible, but I do think you need to have some baseline rules about that too, as at the moment it is just Glen doing what Glen wants with no recognition of the needs of others in the house. Downtime in his bedroom would be just as effective for him as far as relaxation etc went, but would not have the same impact on the rest of the household as it does when he takes over the front room.

 

I know this is really,really hard too, but I do think avoiding aggression by giving in can only lead to an escalation of aggression into other areas of your day to day living, as this will become ingrained in Glen's perception as a successful strategy for environmental control.

 

With regard to his club it makes perfect sense to let him stay home if he really doesn't want to go. He does need to be able to make those kinds of social choices for himself. A pity, though, if he is missing out on something that he would enjoy if you could get him there, and the reluctance is more to do with getting from A-B that the experience of B itself, iyswim. As far as respite goes, I think the idea of respite is for you and your husband to get a break from Glen rather than for Glen to have a break from you, so not taking that break is impacting on you and your partners wellbeing and on your ability to cope between respite breaks. I think it would be a good idea to talk to the respite providers and SS and have them collect Glen rather than relying on his goodwill and cooperation for you to get him there. Unpleasant, I know, but they should have staff available to collect him who are trained in restraint etc and who could ensure that you get the break you need. I'm sure that Glen would very quickly come to accept this as inevitable once the process had been modelled for him a few times, and then restraint would be less likely to be an issue.

 

While anxiety would seem part of the problem I'd be cautious about applying the term agoraphobia without some major professional input, as that could lead to misconceptions/misinterpretation, and maybe something key to understanding and helping the behaviour could be overlooked.

 

Hope that's helpful

 

L&P

 

BD

[JeanneA]

Thank you so much for what you have said it makes so much sense. Last time I couldn't get Glen to Respite (couple of weeks back) I rang and told them and the next morning Glen's link worker and another member of staff came and collected Glen, he did go with them which surprised me as I didn't think he would so guess I will have to contact them again for the next time.

[Ian Jordan]

 

Sounds as though he has a visual processing disorder - if he has - his actions are understandable - and it is essential that they are addressed if you want to sort out his anxiety / behaviour.

 

Please get it checked

 

 

 

 

[Tally]

Sounds as though he has a visual processing disorder - if he has - his actions are understandable - and it is essential that they are addressed if you want to sort out his anxiety / behaviour.

 

Please get it checked

I've always thought that sensory processing disorders were lifelong conditions. Why would it suddenly become evident at a time there are other mental health symptoms?

[call me jaded]

It does sound like sensory overload to me. FWIW I observe my son coping better or worse depending on what other things are going on in his life. At the moment he is suffering with tree pollen (although this is less than in previous years) and retreats underneath a white duvet several times during the day. It's quite bright in there. He looks at a favourite picture, currently something from Toddworld and I print him off a fresh one several times a day. He and I spent a very pleasant hour on Saturday lying on the trampoline after a big bounce (I was skipping on the tramp, much to his amusement) with the duvet over DS and my arm over him. I did some cloud-watching whilst everyone else faffed around with a BBQ (DH and 8 y/o son competing to be in charge of the fire).

 

BD I can see exactly where you're coming from but using restraint to get DS to respite is where I would draw the line. It has too many overtones of the adversives used in the past for me to be comfortable with it. [i never left any of my children to cry, either.] My need for respite is not great (I don't get any from SS) - we are very content at home and I get all the free time I need when he's at school. Likewise I'm not in favour of sending him to his room to have the blinds shut. I'd rather have the interaction still continue with us at home rather than encourage isolation.

 

To me the biggest factor would be continuing in school. I had all of Jeanne's difficulties to contend with whilst DS was in primary school and having tried it all ways keeping him in school was the best outcome for me. Whatever he had to do at the weekends to achieve that was completely live-able with. Once he changed to an autism-specific environment in secondary school his need for downtime lessened dramatically.

 

Jeanne as a short-term measure I'd say it's fine to do what you're doing. There's obviously something not quite right but an assessment is on its way. I would trust your instincts and do what you need to to get through.

[coolblue]

I've always thought that sensory processing disorders were lifelong conditions. Why would it suddenly become evident at a time there are other mental health symptoms?

 

 

Sensory processing is a physiological process and so is susceptible to change if other physiological changes take place - people can't stand loud noises if they've had too much alcohol for example, or bright lights if they are ill.

 

As for the connection with 'mental health problems' - it would depend what caused, and how you defined the mental health problem. Anxiety and depression are also caused by physiological changes, so there are a number of ways in which sensory processing and mental health could be linked.

 

cb

[baddad]

BD I can see exactly where you're coming from but using restraint to get DS to respite is where I would draw the line. It has too many overtones of the adversives used in the past for me to be comfortable with it. [i never left any of my children to cry, either.] My need for respite is not great (I don't get any from SS) - we are very content at home and I get all the free time I need when he's at school. Likewise I'm not in favour of sending him to his room to have the blinds shut. I'd rather have the interaction still continue with us at home rather than encourage isolation.

 

I think this is very situational, and certainly I wouldn't advocate restraint as a 'solution', but i do think in some situations it is part of the solution and benefits parent and child. The same goes for respite... I remember only one situation where respite was 'urgent' for me, and I put myself through all sorts of guilt for seeking it (and all sorts of fear too, because asking for that kind of support by defintion 'flagged' me to SS as a parent in crisis). I think what I gained from those few hours - even though I didn't sleep (which is what I really needed to do) and worried constantly - was enough of a gap to reinforce my determination for 'the long haul' and to re-establish in my head why I wanted/needed to do that. By the time SS got around to offering us regular respite I didn't actually need it in the same way and almost turned it down (if I'm honest, I think part of me wanted to turn it down), but I didn't because by then it was for him - and for 'social' rather than respite reasons - and he benefited hugely from it.

As far as 'not leaving kids to cry' goes I was - and still am - a firm believer/advocate in 'close parenting' in the early years, but I also believe that there are milestones in personal development and independence that can't be achieved without some emotional upheaval and 'challenge'. I also think that the earlier you establish some of those necessities the less liklihood there is of reaching a point where 'tough love' and far more rigorous reinforcers are needed to facilitate independence, or to negotiate reluctancy to achieve it.

 

L&P

 

BD

[Ian Jordan]

I've always thought that sensory processing disorders were lifelong conditions. Why would it suddenly become evident at a time there are other mental health symptoms?

 

Sensory processsing problems often are causative (at least in part) of anxiety and many of the mental health problems difficulties experienced in ASD. For example - if the trigger threshold for visual processing problems is exceeeded symptoms can be extreme - and extremely difficult to cope with. A reasonable response is to panic / take whatever action is necessary to escape - and this can be misconstrued as a mental health disorder / meltdown. I would compare it to being in a very noisy / strobing / dizzy and touch / temperature disturbed environment - it is no wonder that children respond in the way that they do.

When faces morph and disappear, when the visual field breaks up, when illusions occur, when time and space become distorted - it is vital for some to have their problems addressed.

 

[JeanneA]

Well I really tried today when Glen came in from School. As soon as he took his shoes off he went into the living room and put the light on and closed the curtains. I talked to him as simply as I could saying: Mummy's room, Mummy wants curtains open etc. Glen can have curtains closed in Glen's room. That sort of thing, but Glen then became very distressed as I could see clearly in his face, he then started hitting himself, pacing up and down and then would have hit me if I didn't 'give in', which I did I'm afraid to say.

 

It seems to me that as the living room is the main room of the house, where Glen spends quite a bit of time, I think that come the afternoon he needs it to be 'night time', so that he knows he will not have to go anywhere else and he knows it will soon be bed time and associates all that with darkness. Hope that makes sense?

 

I do not want to distress him unnecessarily, so I think I will have to 'go with it' for now.

[joybed]

My sister although not ASD has had agorophobia since she was 16 now 35. As a child she was very anxious was only told we were going on holidays when we were nearly there and then she would start vomiting, she was ill all christmas, hated school and literally clung to my mum and cried all day long. At around 13 she went the opposite way and became a very rebellious teenager drinking, smoking, hanging out with older guys etc she was pregnant at 15 and had my niece at 16. This is when the agoraphobia really kicked in, she became very depressed never went out at all had psychotherapy, hypnotherapy antidepressants the works but nothing worked. My parents tried everything being patient, dragging her out but it was a real fear for her and I will never forget the look on her face when they were trying to make her go out. She knew she owed it to her daughter to go out more but just couldn,t do it. As the big sister I spent hours watching and talking to her, helped her care for Jade and gently persuaded her to go out, it was very distressing. When she was 18 she met her present husband and he has been so patient with her knows when to push and when to leave alone, they now have another daughter who is 7. When Caitling was born she wanted a homebirth but it was refused as she also has chrohns disease, she went into hospital but Cate was a small baby and she had to have an overnight stay it took a while for me to persuade her to stay in hospital and although she loves Cate and is a fantastic mother she nearly walked leaving her with the midwives overnight. My DH doesn,t get it and says she should be pushed but having seen the mental anguish she goes through I can only push her so far. She has never held down a job and my Mum still takes my niece to school as she can,t do it alone although she will go with her in the car. The sad thing is I can see my oldest niece going down the same road she is 19 never had a job and only goes to places she is comfortable at. My sis is a bit better these days although she does rely very heavily on vodka to see her through and has refused medical treatment for her chrohns due to anxiety. I can see she is becoming more ill every time I see her but I can,t get through.

I suppose what I am trying to say is really push for help before it gets too deep seated. I havn,t read the other replies and sorry if my reply is either innapropriate or too depressing. Take care of yourself.

[baranigirl]

Hey I know little about this, but reading this post makes me think there is an element of learned behaviour here? Forgive me if I am wide from the mark but Glen hitting himself got what he wanted and so he has learned to behave like that to get what he wants? Not sure how to break the mould in an older child, but I guess time out etc would work maybe?

 

Good luck with finding solutions to everything and I hope he will go to his respite etc

[JeanneA]

Hi thanks for the replies. Yes learned behaviour, ie. hitting out to get his own way, you are probably right but when I saw how distressed he looked when I wanted the curtains open and light on thats when I decided to let it go. Glen needs the mental health assessment so much as I think it would be so helpful to him.

[baddad]

Hi again Jeanne -

 

I really do appreciate how difficult this must be, and I can certainly understand why you prefer to avoid confrontation, but I do think looking to the long term that the situation will probably deteriorate further unless you can establish some sort of compromise. Does Glen use aggression/violence in the same way in other environments (school, respite etc) or is it mainly reserved for home? (In the same way, BTW, I mean generally to intimidate and control rather than in a 'reactionary' way when he feels intimidated?)

At the moment it's just the curtains etc, but a few weeks ago when he was ill it was the bedding, and intimidation would seem to be becoming his prime strategy for achieveing his own ends, and that can't bode well for anyone involved, regardless of all other considerations like autism and possible mental health issues. Hard as it may be, I think at some point 'no' has to mean 'no', and in real terms the sooner that point is reached the more likely it is to 'take' quickly.

 

I think regardless of any new assessment/treatment that some kind of 'clash' is inevitable and that meeting it head on will be part of any response, because while medication might have a generally calming effect the behaviour/response patterns involved are social/interpersonal rather than medical, and are patterns that Glen knows (has learned) to be effective.

 

I wonder if there are other, less direct ways of achieving those ends? One way that comes to mind is maybe taking the curtains down while Glen is at school, and having his room 'Glen Ready' with his curtains drawn/light on etc when he gets home, with all the doors inbetween open so he can just follow you/your directions there? If he likes that kind of thing, maybe some relaxing music playing too? You could maybe rig some 'temporary' hanger ( a wire or string) for a week or so for evenings and nights so that from outdoors at least it looks like you've got curtains up but which can be taken quickly up or down when Glen's at school. Another option, if you can communicate it to Glen, might be some heavy nets that cut out some of the daylight (have you thought, btw, about where the sun is in relation to where he sits at that time of day - it might be direct, or indirect, light that's annoying him? My son draws the curtains when he plays the wii on sunny days, because the light directly hits and reflects off the TV screen) but leave the room light enough to not need artificial light. There may be other strategies like that you could consider too - they're basically attempts at redirection/diversion to achieve your ends rather than direct confrontation.

 

Finally - and I hope you don't mind me asking about this but it could be a key point for consideration at the MH assessment:

You say your husband 'can't cope' when Glen becomes aggressive. Do you mean by that that he is intimidated by Glen too, or that you feel his responses to Glen's aggression are not the 'right' ones? If you feel like your 'stuck in the middle' a lot of the time and that you've 'had to do everything' it could be your own psychology rather than a 'clash of titans' between dad and Glen that has created that stand off? If it's not too late, maybe handing on some of that responsibility - even if it does feel 'wrong' - is the right way to go(?). If there's a situation now where Glen is physically intimidating to your husband was there a time in the past when that wasn't the case, but the dynamics of the relationship 'triangle' were an issue? If that is the case, exploring that can still be beneficial, because while the physical aspect is a new consideration at least you could identify a mutual goal so you're both on the same page regarding interventions and responses.

 

Hope that's helpful, and very best for the MH assessment.

 

L&P

 

BD

[JeanneA]

Thanks very much for what you've said it is very helpful, but its not easy for me to cope with. I do tend to give in for a calm peaceful life I guess. My husband is Glen's step-dad and he has had difficulties with Glen because of Glen's problems. So I do feel stuck in the middle at times. I do think Glen is controling, he has done this at respite and at school also not just at home. He gets aggressive if he is told to do something that he doesn't want to do etc. I realise something should be done to break this pattern but like I say its not easy for me to do. I am going through some problems myself with my health which doesn't help, so I try to avoid confrontation when I can.

[baddad]

I do think Glen is controling, he has done this at respite and at school also not just at home. He gets aggressive if he is told to do something that he doesn't want to do etc.

 

Do school/respite have any strategies for dealing with this you could use or incorporate at home? Is there any sort of 'training' you can access through the respite centre (they might let you/your husband attend some in-house training or to join some external trainging they are 'buying in' for their staff by paying a contribution)? Or could they offer - with SS approval and funding - some sort of 'outreach' to tackle individual issues that might arise? Coming back to Glen's step dad, is the nature of his lack of involvement due to the family dynamic or to personal reticence - i.e. is he/has he been 'allowed' to be involved or does he choose not to be? Sometimes dad's - whether step dads or biological parents - find it impossible to negotiate what's perceived as the mother-child bond and that strategic retreat is the lesser of two evils. Either way, I think any dad - step or not - who has commited to a relationship should commit to all aspects of it, regardless of whether it's a two way or triangular one.

 

L&P

 

BD

[call me jaded]

If you think you need to break this habit I would suggest removing the curtains completely for a while. My son will readily accept that something is 'broken' as a reason for its disappearance. However my concern is if you make his room 'Glen friendly' you are just moving the problem to another part of the home. I wouldn't really rush to do that.

 

He has obviously picked up that you are distressed by his hitting. I used to walk out of the room when my son did something I was unhappy with. He really hated that I was removing my attention. I would talk to him about it later when he was calm.

[JeanneA]

Thanks jaded yes I have tried walking out the room when Glen hits himself and he doesn't like it, he does do it I think for attention at times.