anxiety

[lsw146]

Hi all,

 

away on holiday which should be so great. Our last one a couple of years back went well so we thought we were over the holiday hurdle on "the unknown" but our DD is the main topic of conversation as usual. She has been on Resperidone for 3 years now and it has been a life changer. We never got a diagnosis and the Psych discharged us back to our GP with a letter saying she wouldn't need the resperidone when she gained more independence and her anxiety decreased. BUT every time we start to reduce her dose (she now on only 0.5 mg sometimes 1mg) the autisitc traits that challenge her become so much more noticeable. Our GP has agreed to keep prescribing but now we are beginning to worry about her future.

 

Here's the problem; school has been going well, in fact most things are good considering she's 15 but this holiday has brought up some issues. You all know you plan the day and it isn't what they expect so the react badly; you dont plan the day and they spend the whole time worrying about what is going to happen next! Her reaction has been to shout alot in public, kick and throw things and finally to hide in her wardrobe. Now not having had a 15 year old before I may be wrong but surely hiding in your wardrobe is not NT behaviour. Our 12 year old DD is taking the brunt of alot of her outburst and asked to sleep in our room last night.

 

So she goes into year 11 when we get back and we are worried that the whole exam revision year will make her melt down. School know she has some issues but of sourse without any specific diagnosis not all teachers have the information and the is no real support system for her.

 

We left psych being told it was anxiety but if she ticked a couple more boxes she could get PDD-NOS. We never realy accepted the "just" anxiety but aslong as our DD was happier and functioning without constant rages we have left things alone. Now grades, future college interviews, work etc keep spinning in my mind and I just don't know how to help her. Friends and family say she dosn't need a label, I constantly debate it and our DD wants an explantion to why she is different to her peers! I worry that we take her back to CAHMS and don't get anywhere and I worry that we take her back and do get a diagnosis....

 

So any thoughts would be welcome. By the way I handled the wardrobe thing by pretending it was perfectly normal and talked to her as if she was in the room with me, it didn't stop her doing it again but helped me keep calm.

Edited August 24, 2009 by lsw146

[Fen08]

Hi,

I'm not sure I can be of much help since my daughter is only 9 but I am going through a similar thing being only in the early stages of receiving a formal diagnosis. So can sympathise with the problems which arise when not everyone is aware of the issues.

 

I understand your families feelings about labeling your daughter but it may help her to feel some sense of ownership over the situation as well as giving people a way of gaining a basic understanding of her needs and potential difficulties.

 

My beleif is that giving a label of ASD is no different than describing her as having brown hair, blue eyes, a happy disposition or a fear of spiders! it simply enables others around us to get a clearer picture of who we are. even with a formal diagnosis in place it is still down to you and her to decide whether she adopts the label for herself and uses it when talking to others.

 

I think we all have mixed feelings when persuing a dignosis, one part of you just wants answers whatever they may be, the other feels terrifed of hearing it said aloud. and when it happens you are likey to feel a sense of relief and vindication followed swiftly by sadness.....I know I did!

 

I hope this has been of some help

Fen

[Kathryn]

Hi lsw,

 

Your post reminded me of my dd's behaviour at the same age. Her anxiety spiralled out of control towards the end of year 10 and the holidays were particularly difficult. We stayed in a cottage and one day I found her crouching in the large empty wardrobe in the room she was staying in. She couldn't explain why she was there but she has since told me that being in a small dark confined space helped her to contain the feelings of panic and anxiety she was feeling and so she often used to seek out such spaces.

 

A diagnosis might help the school to help your daughter during what will be a very challenging year. They would at least be able to call on the autism advisory team for support - most LA's restrict this service to those with a firm diagnosis. I have to say, my daughter's diagnosis at 15 didn't make much difference to the help she got, because the senco didn't really believe in the diagnosis. By the time the school woke up to it, they were too late to put anything in place to help her cope with school.

 

Have you thought of reducing the respiridone anyway? 3 years is a long time to be on it and it shouldn't be a substitute for the right support. If a diagnosis and the appropriate help at school is what she needs, maybe it's not in her best interests to mask the obvious signs of ASD. I completely understand though that anti - depressants bring a reduction in stress and much needed stability for the whole family: my dd was on 5 different drugs for anxiety over a period of 18 months.

 

K x

Edited August 24, 2009 by Kathryn

[Mumble]

We stayed in a cottage and one day I found her crouching in the large empty wardrobe in the room she was staying in. She couldn't explain why she was there but she has since told me that being in a small dark confined space helped her to contain the feelings of panic and anxiety she was feeling and so she often used to seek out such spaces.

I can completely identify with this. I used to hide in my wardrobe and behaviours like that are only now beginning to make sense to me with the benefit of hindsight.

 

[lsw146]

We have considered and tried discontinuing the resperidone but her anxiety and behaviour becomes uncontrollable and she hates it and we start to disolve again as a family. She is on such a tiny dose that the benefits seem to outway anything else. We have had a good day today but are about to try somewhere new for dinner so I am keeping my fingers crossed.

 

I think we are going to have to bite the bullet and get back onto CAHMS. Like Fen said I think geting a diagnosis will give us all clarity and if they still wont give one then we will only be where we are now...

 

Thanks

Jo

[Kathryn]

I understand, Jo. Medication helped my daughter and the rest of the family get through a really difficult time. It should only be a short term solution but it doesn't always work out that way.

 

Good luck with Camhs. I hope they will take your concerns seriously and realise that the respiridone is holding everything together for your daughter.

 

K x

 

 

[Sally44]

I don't know about the medication side of things because we have been fortunate in not having to use anything so far apart from the occasional sedative to get a decent nights sleep. But my gut feeling for my son has always been that I refuse to medicate my child so that they are easier to handle. I know that isn't your situation exactly, but as you say, the medication is masking her autistic behaviour. Maybe if you go back to your GP, CAHMS, whoever you feel is more supportive about a possible ASD diagnosis and tell them that and ask for a referal to a multi disciplinary team that have experience of diagnosing ASDs.

It might be to her benefit to learn how to cope with how she feels and how she responds to things without medication. In a more understanding and supportive environment she might learn how to cope with change etc. The medication might actually be stopping her learning about herself and learning ways of coping. And how long can she remain on this medication? My son used to be very rigid about change. But we've made lots of progress this year eg. with food he will now eat salad, bread with seeds on them, sweet corn, pancakes etc - the list goes on. He doesn't want to do it, but he is beginning to learn how to overcome his initial response and try it. That is all I ask. I don't want him to eat a plate of it, just taste it. Then often he finds he actually likes it and we gradually introduce it. It sounds like you are not getting this opportunity. You have the medication which makes everything manageable. Or without the medication you are back to square one.

The only thing I have had that is similar is my son tends to vomit when anxious or stressed. His school kept sending him home for 48 hours on each occasion because that was their policy. I said I didn't believe he was ill and therefore should not be sent home and that they needed to look at what they could do to relieve his anxiety. They said they had to send him home because that was their policy. At that point the SENCo mentioned medication. So I went to our GP, who referred us to the hospital paediatrician who confirmed what I believed, that there is nothing physically wrong with him and she too agreed that medication should be the last resort not the first. So she is sending a letter to the school nurse stating that he is not to be sent home every time he vomits. That means that school have got to cope with his vomiting. So I am now confident that they will listen to me and ensure that they handle his anxiety levels - unless they want to be mopping up vomit on a daily basis, because I will refuse to collect him (or just not answer the phone) and will simply send him into school with an extra set of clothes. It sounds cruel, but sometimes that is the only way it works. Because they would remain quite happy to send him home covered in vomit for me to clean up and for me to have to keep him home for the next 2 days. And very often he was being sick before he even left the house, just at the thought of school. And this school is a good one that I am quite happy with. But there is still this pressure on the SEN children to become independent etc and sometimes that is just too much for them.

Sometimes, if they believe we are willing to medicate, or cope, or continue with how things are, then nothing happens. If you refuse, they have to deal with it.

My son also likes confined spaces. When we went out when he was younger he frequently went and hid somewhere, usually squeezed into a small space. He also likes wheely bins. He can spend hours in there.

I don't think you have anything to lose by asking the questions, especially if you feel that she isn't going to cope even on medication over the coming years.

[lsw146]

Well the medication came after 6 years in and out of the system amd 6 months of high school where she was constantly wetting, had to dressed everyday and physically lifted into school. Once in school she was a 'model' student but then she would come and release... we had tried all sorts of approaches and I had worked with a lot of autistic kids but we couldn't make a break through.

The meds seems to give our DD the breathing space to see the bigger picture. She is now able to make friends and keep them and to reflect on who she is without damning herself. Before she was always so paranoid, obsessive and angry there was no space for communication but most of the time she enjoys being who she is now. She used to hate being different at school, needing things to be a certain way and hating the chaos of the crowds but since the meds we are able to discuss the day quite calmly and decide which bits are worth fretting over and which bits are the way of the world. She has become much more accepting of herself and others. Like I say this is most of the time, the cracks only appear when there is added stress and confusion like holidays, exams timetable changes.... But it would be good to get her off the meds and see if she can still keep learning.

 

Sorry for the sporadic posts but Im on the computer in a Tv lounge on holiday.

Jo

 

PS another good day today Planning our evening meals til the end of the holiday has helped.

[lsw146]

Okay so back off holiday and finally put in a call to my GP who is aking a new referal to CAHMS. I am shaking now and having to explain things again and at going back into the system but she agreed that hiding in the wardrobe wasn't exactly expected at 15. I haven't been able to do anything all morning even though I knew the appointment wasn't until after 11 (by phone) and now I don't know whether I'm releived or terrified.

[Kathryn]

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Although you have mixed feelings, at least you know you're trying to move things forward and you're a step further in the right direction. I hope you get somewhere with Camhs this time.

 

How has your daughter handled the return to school?

 

K x

[lsw146]

Thanks Kathryn,

 

she is doing pretty well since getting some order back and feels good being in year 11. She is tackling lost year 7's big time because she is worried about them and making herself late for class but her good attitude and high grades mean she's not getting into trouble. I think I just have to make sure she doesn't feel responsioble for every lost soul!

 

Returning to her dancing school has been another thing altogether. She desperatley wants to be there but the teenage cliques and uncertainity in class mean regular meltdowns. BUT I am being firm, we have decided that diagnosis or not her teachers will be told when they are making requests or changes that needed to have a clear purpose and not just because they think it is better (e.g DD designed a new dance costume, teacher hated it DD loves it won't make a huge difference to anything so no backing down and getting upset DD keeps the costume!!) Being assertive, especially on her behalf is exhausting. But enough is enough, She has coped amazing well with her challenges but it is time for people to stop thinking she will gro out of it and start relfecting on how they can help her. PHEW that was a rant Hope I can keep it up though.

 

I just watched agreat piece about girls and autism so going to post the link in general discussion (don't know if has been posted before but made me feel positive about our choices.

 

Jo

[lsw146]

Hi All,

so time goes by. We didn't get a diagnosis juts more fuzzy thinking. DD has started a new school for 6th form but guess what we are back CAMHS! She really is doing well but she is exhausted from the effort and told me she sometimes thinks she should walk in front of a car and then all the confusion would stop. Can't really be ignored even if it is just an expression of how bad she is feeling rather than something she will really do so we are now starting all over again with a locum who will be gone in a a couple of weeks. Yesterdays meeting was about the family relationship and DD decided the locum is not going to think anything different to anyone else and that she is 'stupid' and 'just shouldn't think the way I do'

I asked her to leave the room which he wasn't particularly happy about but I wanted to know what his thoughts at this point were and I knew I was going to get upset and I could feel that DD had hated the session so didn't want her to see me upset. I did tell her afterwards why I had asked her to go out (she wasn't bothered) but she came home really flat and upset. I told her she needs to tell the locum next week how the meeting made her feel but she says she can't explain it to him so can I tell him. He wants her to talk for herslef but she gets stuck so I explain and then it sounds like they are my words in her mouth! but if I am right about the ASD then there are times when she can't explain herself and other times when she is very clear.

 

Oh crikey my head is spinning and I could blab on for ever and that's how it feels in these meetings. Next week we get to talk about her childhood AGAIN. 12 years of circling over the same things but this time its DD who wants and answer even more than us. She wants to feel that it's alright to go off into her own world, to hate the chit chat and the gossip, to like routines and order and all the other bits that come along with being her and it doesn't seem to matter that we tell her everyone is different she still feels isolated and misunderstood.

 

On a very positive note she has a lovely boyfriend now (although they don't get to see each other very often) and being the way she is makes the whole relationship talks very open and honest (and quite amusing)

 

Thanks for listening (reading)

Jo

 

PS going to open a new post to see if there are any females out there who struggled to get a diagnosis

[Tally]

He wants her to talk for herslef but she gets stuck so I explain and then it sounds like they are my words in her mouth! but if I am right about the ASD then there are times when she can't explain herself and other times when she is very clear.

Would she find it easier to explain things in writing and hand it to the doctor in stead of trying to speak at the appointment?

[Kathryn]

Hiya lsw

 

Great to hear your daughter is doing well at school but can the school do more to help her where everything gets a bit overwhelming?

 

I can only sympathise - my daughter who is now 21 has tried to engage with mental health services but has signed herself off as she has found them a complete waste of time. Which leaves us, her parents, her only support services as ever, dealing with all of her stress.

 

K x

[lsw146]

Thanks tally, when we came home and she was saying she was 'stupid' and how the session made her feel I told her she needed to tell the doc, of coursexshe said she couldn't so I suggested she wrote it down or let me right down what she was saying or even to record the conversation we were having but she said know and started to cry.

Kathryn, school have been really good especially her psychology teachers but while the 'specialists' aren't giving her an answer she seems more and more reluctant to says she isn't coping til she feels drained. I'm pretty in tune with her and good at picking up the signs but I'm sure you know that the more tired you get as a parent the harder it gets to help.

Maybe I could e-mail her psychology teacher as they have had some autism awareness training and could keep a closer eye on her? They tried hard to get her assessed through school but the system as always stopped us.

Thanks for your support

Jo

[lsw146]

Well everyone after 10 long years of been referred and rereferred to CAMHS by DD has a diagnosis of Aspergers. Too say I am exhausted Is true but also weirdly relieved and a little but sad mainly about how long it had taken.

My DD who is 16 sense she feels a sense of satisfaction that she has been acknowledged and that she doesn't have to pretend to be what she knows she isn't. She feels she can now ask for help knowing that she isn't 'stupid' just different.

Time for a cup of tea now it was a 2 hour meeting!

I love her to bits and would like to say thank you to the forum for 'lending an ear'