Don't know what to do

[sylvm]

My daughter is 16 and ASD. She is also dyspraxic and has severe anxiety which have led to physical symptoms. This culminated earlier in the year with her being admitted to the local adolescent mental health unit. She coped here surprisingly well. Her physical symptoms have reduced and she has now been discharged. Their view is that we have taken on the role of "carers" for her ie. not encouraged her independence. I would dispute this - the fact is that she didn't fit in with neuro typical young people and was badly bullied at school and we have found over the years that she has better been able to access "special needs activities". Anyway, the main reason she does not do as much as she might in terms of stuff around the house etc, is that she has always been very volatile and likely to lash out. This usually happens if she is under pressure ie. when you are trying to show her how to do new things or when she doesn't understand things (I feel there is a processing problem involved). I have raised this issue with the unit a number of times. They said that they had not seen any evidence of this behaviour and initially put it down to the mother/daughter teen dynamic. I dispute this as it also happens with my husband. It is just I am around more. Anyway, we have had a lot of violent incidents since she became a day patient and these are continuing. The mental health team say I should phone the police but I do not see the point in doing this. By the time the police come, she will be a just a vulnerable little girl sobbing her heart out and absolutely terrified.

 

However, equally I know I cannot carry on like this. There are times when I really feel I do not want her to be at home. I can't spend the rest of my life under fear of being hit. I have just had another episode which started because she was agitated by making her sandwich for her lunch tomorrow and feel I am close to reaching rock bottom. We had a visit from a social worker while daughter was in the unit and are supposed to be having "parenting support" - not sure what that will entail but don't feel terribly optimistic. If anyone has any suggestions on what we should do I would be very grateful.

 

 

I should have also said that daughter says she has absolutely no recall of what happens, although the unit seem to think she has.

Edited April 19, 2014 by trekster

[oxgirl]

Hi sylvm, sorry to hear about your troubles with your daughter. What kind of sanctions and consequences is she getting after a violent outburst? Maybe you could sit down with her and agree a contract of some sort. Point out that violence will no longer be tolerated and that if she is violent towards you then "this" and "this" will happen as a consequence. You'll need to find something that she really cares about and will also need to be very strict about following through with your threats. If she is into computers, for example, you could take away computer time as a punishment. If this results in more violence, then continue taking things she cares about until she gets the message that you mean business and that she will no longer be allowed to get away with this behaviour.

 

I also don't see much wrong with the mental health team's suggestion of calling the police, I would do it if my son was violent towards me. Maybe it could be the shock that she needs to realize that this is not acceptable. It's all very well saying she'll be a frightened little girl, but is it any better that you are frightened by her attacks? She is not a little girl, she is nearly an adult and presumably adult sized and if she is going to continue to act like this she may one day get herself into serious trouble. If this happens, she will certainly be treated like an adult.

 

Hope that helps.

 

~ Mel ~

Edited November 18, 2013 by oxgirl

[Sally44]

I think it also depends on her functioning level. And I think that your problem is actually more common than you think, but that families tend to get isolated and think it is just them.

 

I agree with the above, that you need to set down rules of behaviour and consequences. But they also need to be realistic, and if you are not prepared, or you don't think it appropriate, to call the police, then don't put it in as a consequence. Because the main point is making the rules, making them together, and sticking to them whatever the outcome.

 

I think you need to get social services involved. So that she can get some support, and so that you can get some respite. So you need to put in writing a request that she is assessed, and that you and your husband are assessed as carers. As she is becoming an adult, you need to be able to take a step back gradually, and for her to become more independent, and if that means support workers being with her, and if that means eventually moving out of the family home into a group home, or similar, then SS are the people to be involved. But it may well be a fight to get them involved, and you may need to lodge complaints along the way.

 

Also, if she is highly anxious and these outbursts are quite regular things, then has anyone every suggested medication?

 

But IMO, emotional outbursts are part of being on the spectrum. I'm not saying that therefore we do nothing. But that the family, and the individual need to learn how best to manage and control them to the best degree that is possible.

 

IF your daughter did behave differently whilst in hospital, then you do need to think about why that might have been. Was it more structured? But equally SS need to become involved, and if they do any key worker is probably going to have to deal with what you have.

 

There is also the real possibility that you, as a family, are treading on egg shells, because of her behaviour, and are being controlled by your own fear of what she may do, and therefore avoid doing or saying things? I think this is a constant balance we have to make. For example I have a 12 year old son with an ASD and OCD and high anxiety. He can be controlling because of that. He can also get very upset if things go wrong. For example last weekend he was supposed to go to the cinema with his support worker. Prior to the film he needed the toilet. He spent over 40 minutes on his toilet/washing rituals and therefore missed the film. He got very upset and the support worker struggled to get him in his car. In the car he was thrashing about so the support worker had to pull over. And he had to be bought home, where it took a further 30 minutes for him to calm down. When he was a couple of years younger he was so anxious he was out of school for about a year. There were a couple of times I got thumped. Both times in a supermarket. It hasn't happened since, but it easily could.

 

Maybe rather than avoiding situations where your daughter does get upset. Talk to her about what is going on in those moments. Ask her what would make it easier for her. Talk about what kind of consequences she should have for those types of behaviour.

 

When my son gets upset he needs a quiet place. Usually his bedroom. Where I tell him something like "I can see you are very upset/angry about xxxxxxxx. You need to go to your bedroom to calm down. And I leave him there to calm down. I know that if I try to talk to him, or touch him, that he will get worse because it is further sensory input at a time when he is not coping. After 10, 20 or 30 minutes, when he is calm, I will talk with him about what happened and how to deal with it better the next time.

 

But maybe the best way for you to go forward is for SS to be involved. And for your daughter to have a support worker and for you to have respite. You could also ask for Direct Payments to pay someone to come and do things with her. And put it from the angle that she needs to slowly become more independent as both she and you and your husband become older.

 

The other point is about unrecognised needs. She is now 16. Is she going to remain in education? Do you have any psychologists report that does highlight all her needs/difficulties? If it would be useful to your situation, or to get support and acknowledgement for certain difficulties, you could consider having a private professional assess her. They could assess her cognitive ability, any difficulties she has with executive functions like processing information, sequencing thoughts/actions. Because your post seems to be saying that although she has been in mainstream education, that she is only really able to access 'special needs' activities, and that she can get so upset about something as simple as making a sandwich that she may have a melt down and hit you. So what is it about such a simple task that is getting her so upset. You think there are processing problems. You may well be right. Infact if she has Dyspraxia she will have processing problems. Dyspraxia is about mental as well as motor sequencing. Having a report that states that could be helpful. But it would be costly. If professionals try to put it down to the mother/daughter dynamic just disagree and say it happens with dad too.

 

If she is going to stay in education what form is that going to take. Could she be residential? And with her needs might that need to be SEN college or similar? What examinations is she expected to sit and what grades is she expected to get.

Edited November 19, 2013 by Sally44

[Sally44]

I would also suggest that you keep a daily diary of things said/done. You can give a copy of it to SS when they assess. If they don't respond to your written request to assess [and ask them to reply to your request within 14 days], lodge a formal complaint with the local authority complaints department. SS are LA employees. Give a timescale within which they should reply to your complaint, ie. 14 days. If you don't get the assessment after that, lodge a complaint with the LGO [Local Governments Ombudsman]. You have a legal right to be assessed as carers, and the LA must respond to a request from you to assess your daughter. If they don't that is maladministration, which the LGO can investigate. Getting the LGO involved usually gets SS to assess.

[sylvm]

Thank you both of you for your replies.

Mel – sanctions wise, we have tried various things including no computer/TV time. There is no issue with this from her because afterwards she is horrified at her behaviour. In fact, she begs me to take the computer out her bedroom, or to phone the police etc. We have always followed through on punishments.

We do need to draw up a list of acceptable/non acceptable behaviours and sanctions with her. However, the thing is she does know the behaviour is unacceptable and the rest of the time she is a well behaved girl – it is almost like she has 2 personalities. She says she doesn’t know why she does it. I think she is unable to recognise what she is feeling and it kind of explodes. That is why I do not think calling the police will achieve anything. Yes, it will frighten her but I don’t think it will stop it happening.

Sally – she is higher functioning. I suspect you are probably right and there are other families who are affected and feel isolated.

Social Services have done an assessment following being notified by the mental health unit (this apparently is a legal requirement). This was a general assessment to check there were no safeguarding issues (which there weren’t). I raised the behaviour issue with the social worker and gave her examples of the incidents. She initially said they sounded like typical ASD outbursts but when her written report came back she said it was typical teenage behaviour!! It is my feeling the social worker was “got at” by the unit at daughter’s pre discharge meeting where we were left sitting outside while the professionals had a preliminary discussion without us. One of the recommendations made by the social worker was intervention by the targeted youth team. I am not sure what that will involve and whether it will be any use.

I do not think we would get Direct Payments for her based on our income whilst she is under 18, although on her income at 18 I will definitely look into it. She is almost 17 and children’s and adult social services are so separate here that I think it would be a wasted exercise to go through an assessment now, to be redone this time next year.

I would be very happy for daughter to be on medication for anxiety but the mental health unit have not gone down that path. I suspect (hope) it may be different now we have been referred back to CAMHS.

I do believe she didn’t have outbursts whilst she was in the unit. I think that it was because she was holding it all in and only relaxed totally when she was with us.

Thank you for the examples you gave about your son. I do think that we have probably “lost our way” a bit. I think we are giving more sensory input than she can cope with when she is already getting in a state. We need to go back to what we used to do which was similar to your son going to his room to calm down.

Daughter struggled with mainstream school (never had a statement – we were told she wasn’t “bad enough”.) With hindsight, I wish we had just gone for it ourselves. She ended up, coming out of school June 2012 to be home educated as she just wasn’t coping. However, the anxiety just continued to get worse until she was eventually admitted to the mental health unit. Although she has been discharged, she will continue to attend the education centre which is on the same site until next summer. The Head is talking about her sitting 1 IGCSE plus a functional exam in Maths next year, so she obviously has huge holes in her education. I do not think she will cope with more than supported learning. I have been looking at the local colleges which do some highly thought of supported courses which would hopefully build her confidence and skills and enable her to move on to a mainstream course at some point.

Again, both of you, thank you for your replies.

[Sally44]

This is a link to the Priory Group of independent schools and colleges. This is just one of a number of independent education providers. http://www.priorygroup.com/downs-adhd-ebd-education_d2

 

 

I think you have been fobbed of for years - as are most of us. You have been told she is mainstream material, when she clearly is not when you look at what potential exams she will be sitting as opposed to what maybe her cognitive potential. She has been failed by a system that is only focused on the cost of funding rather than the needs of the individiual.

 

If she had had a Statement, and that Statement did detail all her needs, and it was worded in a legally binding way [so as you see getting the Statement is not easy, and getting it legally binding even harder]. Then the LA is responsible to fund the Statement regardless of WHO is supposed to provide the service. Ie. the LA pays and claims the money back from Social Care etc.

 

Direct Payments are not means tested. They are payments made to the parent, and the child when they become an adult or capable of handling their own finances. And these payments are for specific things. For my son we are looking at getting Direct Payments so that someone comes to the home when he refuses school, and who is able to either take him into school, or stay at home with him. That allows him to access some education, and it allows me to work.

 

The SS assessment you had done was not a Core Assessment, it was just to see if there were safeguarding issues, which there were not because you stepped into fill all the gaps left by a lack of education, therapy, support services.

 

Have you had an independent EP or Clinical Psychologist report that does detail what her strengths and weaknesses are. Without that you really don't know what she is capable of, and what support, therapy, specialist teaching, life skills teaching etc she needs to reach that potential.

[trekster]

Is it possible that being due on her period is calling the outbursts to be worse? Tartaric acid and benzoates of any kind can cause me to become violent. There is also the possibility that she is unable to express severe pain, I was unable to express pain until about 4 years ago and still struggle to say 'ouch'.

 

Would she use communication cards? I have some from...

http://stickmancommunications.co.uk/epages/747384.sf/en_GB/?ObjectPath=/Shops/747384/Categories/Communication_Cards

 

dyspraxia foundation

http://www.autism.org.uk/directory/search-results/pg=1/resources/4049.aspx

 

parenting classes run by parents of 'special needs' children

http://www.familiesinfocus.co.uk/

 

database for parents of disabled children up to age 19

http://www.hertsdirect.org/services/healthsoc/childfam/specialneeds/sup/hand/

 

Hertfordshire branch of the national autistic society

http://harc-online.org.uk/

 

Hope the links I've given you help.

Edited April 19, 2014 by trekster

[smileyK]

I am female , and can personally relate to your daughter's emotional outbursts ,difficulties as I have also struggled to control my emotions until spiral and too late and anger gets better of me because frustration due to misunderstanding of situation or feeling general frustrated ,isolated or confused ,scared so only way I can physically show this is anger can be such challenging yet difficult emotion , I also have dyspraxia , Mixed Anxiety & Depressive Disorder , Social Anxiety Disorder and more recently current diagnosis of ADHD (combined type) can be so difficult to manage all issues and difficulties as well as emotions feelings so much going on round you trying understand get emotionally drained as well as overwhelmed so can empathise with your daughter i have had on/off input from mental health services and teams since early teens due to emotional difficulties i was experiencing at that time which over took me completely! i felt so guilty ,bad ended up lasting hours on end my outbursts resulting in emergency services being called several times was really bad when woke up in morning felt disgust anger towards myself which made self -esteem even worse!

 

XKLX