Desperate - Help! (UK)

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Hi. I have been where you are and much further down that dark terrible road.

The first thing to realize is that even after you get a dx, it is still a very very long road. Unfortunately, there is no magic pill that will treat her symptoms. Some parents are very lucky and find what works right away, regarding therapy, supplements, and medication, and other work on different combinations for years before getting it right.

Please realize that she really can't help it and she might genuinly regret her behaviors after they occur. Also, from what I have been told, and what I believe, the OCD, ADD, anxiety, etc...are all part of the disorder, not separate issues, and should be treated as part of the disorder, not separate issues. They are co-mingled, so treating the anxiety (for example) with an anti-anxiety medication, may not work because the cause of the anxiety is not being treated. Make sense? Probably not, but it will.

In order for you to help her, you must learn to understand and communicate with her. Altough she is (very) verbal, you may still not be communicating with or understanding her.

I know a lot of people on this board, and others, feel very comfortable informally diagnosing themselves and their children as ASD. Believe me, every other type of psychiatric/disorder board members do too. BUT - a word of caution - your child might not have ASD. She may be bipolar. She may just have SPD. She may just have a mood disorder. She may just have OCD. She may have extreme allergies. She may have a combination of all of the above. This is the reason not to treat with pharmaceuticals until you have a dx.

Assuming she does have ASD. Ok. You need immediate help, I understand completely what you are going through x 10. I would like to offer suggestions and I am sure many others on here can offer great suggestions as well regarding things you can do between now and your appointment, but you must list specific, very detailed situations. Can you please give an example of a bedtime melt down that includes time, location, background noise, clothing she's wearing, routine, what you say to her, her response, etc...?

...it's on the landing outside her bedroom after having got up, or just got ready for bed, and it's because, in her own words, she can't stop thinking and go to sleep, all these thoughts come into her head about things she wants to do or has done and wondered if they were OK etc., and she can't stop herself saying them because she just has to say it, and when I try to reason with her that it can wait until tomorrow (she will be calling downstairs for a long time giving us no time to recover from the day or relax), or ask her to write it on a piece of paper so she can go through the list the next day with me she won't and she will become more and more anxious because no matter how many questions you answer she will find more and more and will just be never ending and she will push and push and no matter what you answer it's not good enough.

She's admitted today that unless you give her the right answer no other answer will do. She also admitted the things that stress her are communication problems because she often says things that others don't understand and ask her to repeat, and she goes nuts if she has to repeat it, or she doesn't understand what's been said to her no matter how logically it was said. Everything plays on her mind, she only wants her own way or all else causes meltdowns and it can only be me no-one else so the pressure on me is enormous.

Communication issues: How do you talk to her?

Do you say to her (for example, using this one for illustration only):

"Go to your room and read the 'My Little Puppy' book."

or do you say

"NAME (with eye contact at her level), walk across the gray carpet (while pointing) until you get to the first brown step (walking with her), then walk up the brown steps until they stop (walking with her), walk on the gray carpet until you reach your brown bedroom door (walking with her - you get the point). Walk through the doorway until you reach the book shelf. Sit down on the floor. Take the 'My Little Puppy' book off the shelf, put it in your lap, open it, and read the 'My Little Puppy' book."

Yes, it is time consuming to talk like this. As an NT parent, it's downright exhausting, but you may find after giving her all instructions in this way, she will catch on to what the shorter phrases mean and you won't have to be so explicit for repetetive instructions. Try doing this throughout the day. It may make her evening/morning anxieties improve.

Try it with just you and her to see if it works, if it does, train other family members to do the same but while training, standby at all times to be the interpreter.

Rather than asking her to repeat herself, try rephrasing, in the above type detail, what it is you think she is trying to say/ask for. Be the translater between her and others for a while and see how it goes.

Put all your effort into this strategy for one week. That means no relaxing time if necessary. Then decide if it significantly reduces her anxiety or not and if so, put more effort into it the following week and following week and following week. Eventually you won't have to be so explicit.

If this helps bedtime questions/anxieties, that is great. If it doesn't, I think you should try setting aside an hour for bed time, so that she can ask all her questions.

Thank you so much for trying to find solutions.

I communicate clearly, and when she says there are things that others say which she doesn't understand she has usually not told me at the time, and she didn't clarify what she meant when she made this admission. When I have said something to her that she says "what do you mean" it's been really clear things (I can't remember an example) and I can never understand how she could not have understood it. It's not just me it's the other members of the family too, (and her sister is very intolerant of her and I can't control this despite my best efforts) but if she doesn't understand the first time she will get instantly angry and even explosive, and she makes me almost shake sometimes that I can't almost get my own words out or she makes me forget what I even said because she reacts so badly. If I forget what I said she gets even more mad and rants at me. If she says something really quickly herself or you are doing a task when she comes to ask/tell you, and you didn't have your full attention on her (she will never have empathy to see if it's an appropriate moment to come and ask stuff, she will even do it when I'm on the phone) and you didn't understand or hear all of what she said she gets mad again. She has no understanding of other people's priorities or important things they have to do and she is not prepared to wait at all, e.g. if you're on the phone. It doesn't matter how gently or calmly you ask her to repeat something she will still get mad and blame you for not hearing or understanding what she means. And if she explains something in a really confusing way and you don't get it, or if she misses out crucial details and you are puzzled, she has no empathy that it was her fault for not explaining in full or clearly, as far as she's concerned it's always your fault and she just blames and gets mad.

The questions she fires down the stairs at night are often the same questions she asks every night and are always ultra trivial things, I've tried repeating myself and saying that my answer to that question will always be the same and giving her the same answer. She hates being away from me (I'm like her obsession), she says she's lonely at night and I think the questioning is part anxiety and part determination to keep human contact going because she knows she can't sleep and she will lay in bed feeling lonely and thinking. So no matter if I gave her an hour to ask questions she would stay awake and find more to shout down once I left her room - I can't win! And I have jobs I have to go and do when she goes to bed plus I'm utterly, utterly exhausted every day from her behaviour all day and my other responsibilities so to sit with her getting an hour of questions and then more after I left would be too much for me.

bedtime story?

I read to mine till they were 13 and still do if they are stressed, it focuses them on something other than their anxieties for just a little while and gives you something to enjoy together without too much pressure on either of you, it reminds them of the safety of when they were little and sometimes they even fall asleep

Hi, thanks for the suggestion. I did used to read them both bedtime stories until they were happy to read their own stuff at bedtime. She keeps her own reading under her pillow and I've even resorted to letting her read as long as she wants, as I figured she will get so sleepy in the end that she will just conk out, but this doesn't stop the bed time behaviour. I would have no problem reading to her, but I don't think she wants me to, and even if you read to her she constantly interrupts you while you're reading to make points that it becomes not a relaxing story any more! The problem is that her mind can't settle at night, even with some Stressless tablets for relaxing children (herbal), even the placebo effect of those doesn't work. I do know how she feels because I've always had this problem getting to sleep too. She also has a musical bedtime toy (it's a toddlers thing but she likes it and I don't have a problem with whatever she likes). I've asked her if she wants a colour changing lamp to stare at to take her mind off things but she says no. She dreads bedtime every night and starts working herself up in the hour before she goes. I just don't know what to do, and now we will have social services to deal with as well.

does she like to sing?

you could sing some simple songs together or do a sort of vocal jamming where you each do a beat or rhythm - fun, relaxing, clears the head and can be enjoyed anywhere, including in bed.

or meditation - start in her room on the bed during the day so it becomes set in the place you want her to be and gradually move the time up till it's a bed time settling routine. You could look at mindfulness which is a form of meditation used specifically for stress relief by many professionals - it is well researched and proven to be a good therapy for stress and anxiety and it can even be combined with CBT by professionals which can improve the effectiveness of the CBT in clinical depression. It is based on Buddhist practice but adapted to modern clinical needs, it is safe and easy to use at home too and there are several manuals that tell you how to do it with CDs to guide you through the meditations. The focus is on the difference between the "doing" mind which is always planning, striving and ruminating on the future and the past, and the "being" mind which experiences the present moment in its entirety. The program usually starts with some basic practices that could be fun for young children and are certainly easy enough to practice with them - the mindful raisin eating practice is definitely child-friendly and you can do it with all sorts of different finger foods, it is a sensory experience everyone should enjoy at least once! Even just that and the mindful breathing could be enough to help ease her mind a bit and when I was doing it with my daughter I found it very calming too.

If she can learn to be mindful she can learn to take breaks from her churning mind by doing anything mindfully - brushing teeth, grooming the dog if you have one, making pastry, washing up........... it could be great fun to find out just how many things you can do

And please take care of yourself, too.

Would there be a calm time of the day you and dad could explain to her that he's her parent, too, and wants to help her develop skills for dealing with these issues?

And any outside chance a member of extended family could temporarily move in and help out?

thanks guys, she does actually love singing and has a fantastic voice too! I could try some singing for/with her. I will research how the mindfulness technique works to see if we can incorporate that. My husband does want to help, but he is struggling to accept that she even has a condition, although he accepts the behaviour isn't normal. She only wants me and often she behaves far worse with my husband. Recently because I was ill he was getting her ready for bed and her tantrums escalated which is what I suspect made someone complaint about the screaming. She is just so obsessed with me, she will only accept me doing things for her most of the time so it's hard for her dad to take the load off me when it makes the problems worse. We don't have space to put up relatives and don't have any close relatives so she'd be worse with 'strangers' because of the change issue etc. but thanks for the suggestion. You're all so helpful.

Hi whirlingmind,
Some suggestions, take or leave
. Could you and her make a recording of you singing together? Maybe she could listen to it in bed, obviously it would have to be calm songs,and perhaps would make her feel less lonely?
. What about making some stories with the family pictures? She can also look at these when she is alone in her room. You could make books up, answering the kinds of questions she constantly asks, they may ease her anxiety and constant need to question those same things over and over.
. Does she feel safe in her room, not scared of any noises, shadows?
. For the meltdowns when you need to go out. Try even more preparation, like PREPARATION on steroids! A talk in the morning about where you are going, ask her if/what her worries are about going, talk them through, let her know how important it is for you all to go, let her know when you get back she will get a treat (whatever motivates her) if she tries to cooperate, use visuals to support this, reminding her of the outing as the time is passing (use a watch, timer, cards you give her to let her know the time is coming)... all so she is truly prepared and not only prepared but remembers being prepared. Of course the whole time you are out, reinforcing her good behaviour and encouraging her. Keep it short until she gets used to being out for longer. That's all I can offer on that one, but I will say that this kind of intense prep works for both my boys (age 13 and 4 and at opposite ends of the spectrum), not saying they never meltdown in public, but I think they'd do it constantly if we didn't lessen their anxiety by getting them ready this way.

Lastly, I just want to say... don't despair about social services.You are in an incredibly stressful and crazy situation. It could be a blessing, it should be. You need to let them know what is happening, how you feel you can't wait to have her assessed. When it's like this, open your door to them, tell them "yes, it's like this every day", "we don't know what to do" let them know how anxious and about the meltdowns she has... if they think your situation is desperate enough they may be able to speed up the process to have her assessed. This is not something you would ever want to abuse, but there are times when a family is in real crisis and things can be done to help immediately. Without going in to detail, this kind of thing happened to my family (in Aust) and the wait became no wait and the services were there when they really understood we CAN"T wait, not we don't want to wait, but WE CAN"T WAIT!! !! !! !! !! They never tried to blame us, make us feel like crappy parents, they only tried to help. Hope it works this way where you are. Also the emergency room, we've gone that way too... last resort, but if you are at the point where you need immediate help, go there.
I'll be thinking of you and hope you get some real help soooooon!

Those are all good suggestions and I will try to implement them. We just had the visit from SS and explained our situation, so they understand what we're going through, they said there aren't services available, even with a diagnosis! Anyway, I'm relieved because they could clearly see there was no nefarious reason for the screaming (in fact my daughter started ranting over something really unreasonable as they were leaving just giving them a parting shot of proof) and they stated that there was no role for SS with us (although they also meant support services not only investigative). I asked them to write to the referral unit to plead our case for an expedited assessment but I don't know how much good it will do. At least I have that stress off my shoulders now though.

The first time SS came to us, at our request, they said we were coping and had no need of assessment - lovely to hear we were doing so well in spite of having a 12 year old autistic son trying to jump through windows to kill himself.

However, when the other referral went through, what it meant was that we had a 2 month old report sat on the desk saying we were a good family doing well in difficult circumstances which I am sure made a huge difference to the approach when SS came back and did the job properly.

Hopefully, camhs will refer you back to them when you get there and they can't ignore the child mental health team plus a second referral so soon puts a protocol in place whereby they have to at least do the formal assessment - so you might not have got anything out of them now but it may come later, especially if camhs supports you needing respite.

don't try to implement too much at once - choose a couple of things you think might suit her and see if they work. Too much will unsettle her and overload her - it will also be added work you don't need too much of right now.

Men seem to come to terms far more slowly with their children's problems, possibly because they are out at work all day and don't see as much of their children, and also sometimes because they are on the spectrum themselves and do not see the differences in their children the way mothers do when they see them with their peers - your husband will get there over time.

Thanks. I think it boiled down to the fact not that they didn't want to help us, but that it's the NHS and services are expensive and scant and reserved for the really severely disabled children (I do think there's an element of seeing high functioning children, who in our case are very intelligent, as not being as needy as non-verbal rocking children who scream even more than my daughter). The SW told me that we probably aren't eligible for paid respite because again, it's for the really severely affected children. I accept that there are children worse off than ours, who are violent, self-harming, suicidal or other things, but I tried to get across that if the mum collapses the whole family collapses, and I have been getting ill from the stress. I mean if I end up in hospital SS will have no choice but to step in then, because my husband would lose his business and we'd lose the house if that happened, if he had to stop work to care for them. Plus he would never manage the home education! I do think the fact that he is working all day means he doesn't appreciate the severity of her behaviour, even though when he comes in at night and she's melting down he gets really stressed with it, even for a short while so he knows how bad she can be.

With my eldest daughters CAMH'S referral, her behavioural needs are more for support with social skills and independence so her needs are far from urgent. My youngest daughter is not referred to CAMHS but a separate unit for younger children, which is very annoying because it makes it messy that all 3 of our referrals are with separate places. Perhaps when SS write to our GP they will advise them of the stress I'm under and I did tell them that with my recent illness it was so severe we had to have a mobile paramedic and the GP out and I nearly had a full ambulance as well. So the GP knows the strain I am under. Perhaps that will help to convince SS that we need a social work assessment for outreach services or something, even if it was funding for me to find the services myself privately. I've been looking on www.challengingbehaviour.org.uk which is a really useful website (FIS told me about them) and they say that the government policy clearly states that a comprehensive assessment must be provided and the support needed must be provided. They state that behaviour which disrupts home life and stops the child taking part in social, educational or leisure activities are included in the description of challenging behaviour. It also states "support must be available early enough to prevent behaviours either developing or getting worse". So I guess they (whichever the correct agency is) are already failing us. Try telling them that though, what is supposed to happen and the real life experience of what actually does happen are often two different things. I might see if there any advocates at the challengingbehaviour.org.uk website.

I am not from Britain so ignore me if this is a horrible suggestion.

Can you get respite based on YOUR stress level? Would that be faster?

Just a thought.