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KAY EF

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Hi Everyone,

 

Im a 41 year old single mum of two kids. My 13 year old daughter was recently diagnosed as Aspregers after her situation worsened when she could not go to high school. When I say her situation worsened I mean she has always been very withdrawn in the company of her peers and suffered from anxiety but when she went to High School it was too much for her with all the change, new teachers, many more children etc. It is now over a year since she was in school although she is trying to make small steps to get back before Christams to at least one class a week.

 

My biggest problem is her meltdowns....she is becoming increasingly aggresive, at times attacking her younger brother with anything she can get her hands on to thrown at him. They tend to start from nothing, maybe something as simple as her brother switching a light on that she needs off! We feel like we are walking on eggshells all the time scared to do something to upset her or even say something as a suggestion or advice which will normally be taken as critisism by her and this is enough to start her off again.

 

The help out there is rubbish! I have very little (at times zero!!) help from my family so therefore I need help from other areas but everything is so disjointed, different profesionals don't get together and talk about the whole picture. Education are trying to help get her back to school but the pressure that puts on us as a family is not understood by them, her anxiety levels are too high at the moment I think to attempt to go back to school but she knows as well as I do that if she does't go back she is getting nowhere fast in terms of learning. She has not a single friend and I think until this is tackled there is no way she can enter a mainsteam school with over 1,000 kids.

 

The support is non existent from social work. I feel she would benifit from a befriender to at least get her out the house for a bit but as usual resourses are limited.

 

Im hoping to find some advice out there how to help her find a friend? She has lost what little interest she had in anything. She just sits at home every day on the pc and doing maths and watching the same TV. I had hoped if social work got involved they could encourage her to join groups as she wont take advice from me.

 

So difficult!! :wacko:

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i used to be agressive,violent and flip over the smallest of things like your daughter and it end up resulting in a meltdown lasting hours would become 'out of control' and dangerous quickly so can personally understand your experiences and situations i would either ring or email the NAS and ask for there help and advice they can do an assesment and get help and support for you and her tell you bout local parent support groups so you gain more information and advice from others going through similiar thing

 

her displaying these negative types of behaviour could actually be hiding behind a MH problem like depression in the background anger can be physical sign to this so it needs to be looked in closely

 

http://www.asdfriendly.org/board/index.php?showtopic=20556

 

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=2186

 

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=797&a=18894

 

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=2176

 

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=297

 

http://www.autism.org.uk/nas/jsp/polopoly....=734&a=8471

 

http://www.autism.org.uk/helpline

 

http://www.autism.org.uk/contact/email

 

have other related disorders been looked into such as ADHD ODD PDAS ??? all connected and linked to the autistic spectrum has medication been thought about as an option? is your daughter with local MH team or ASD team?

 

i'd go to your GP and have a word about seeing what around your area that could benefit you and her as he could refer you or suggest some other ideas you havn't thought of!

 

take care

good luck with everything

 

XKLX

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Has your dd got a statement for school?

 

Has your daughter had an assessment from Social Services as she has a disability she is a child in need and should recieve a full assessments of her including Rectrational and social activities, my son has a sessional worker, when it work and its in place it really benefits J considerably and really assists my own abilities to take care of J when he is home as he is in a residential school because he had massive anxieties too when in mainstream and couldnt cope, he did have time off school via the gp but it ment I had to deal with J all on my own, so we tried Part time school, in year 6 he managed just a month of school in a Whole year with him fight against it everyday, he recieved additional mental health diagnosis because of the trauma he wasnt accessing any mainstream activities and so we fighted for a residential specialist school as he required a 24hr curriculum, we won that after a year long fight, some children require a very specialised enviroement, he is now settled in his school after been there a year and is excelling in science and PE.

 

It is not easy to get the right support but I would start with an assessment of SEN and an Assessment of Child In Need.

 

Also a carers Assessment if you are a paid carer from carers allowance, anyway for further support I traditionally recommend contact a family.

 

http://www.cafamily.org.uk/families/index.html

 

Her struggles sounds like much of is because a lot of it has become a cycle, her behaviours have become habbit and her Anxieties, fears and phobias are disabling her abilities.

 

JsMumxxx

 

 

 

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hi know bit of what you are going through i too have dd of 13 ,as yet undiagnosed for aspergers,she has been off school for 18 months now ,she too got as far as secondary school but couldnt cope,she loves her own company and she too,( thers a lot in common here) spenda all day on computor and tv,although is very very obsessed with the twilight books.

i'm sorry really unable to offer much advise as going through it and all very new to this but can say know how you feel eggshells is an understatement sometimes :tearful:

we too have been told things like social services may be able to offer some respite,we were then told she may not tick all the boxes :wallbash: and we not be able to get any help,but the big problem with that is my dd will not see anyone,shes just not interested in meeting anyone ,she does have 1 friend whom she sees approx once a month,but wont go out anywhere or see anyone :tearful:

as said know what you are going through and very hard sometimes,but have also found this website great for getting advise and letting you know you are not alone

take care regards julia

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hi know bit of what you are going through i too have dd of 13 ,as yet undiagnosed for aspergers,she has been off school for 18 months now ,she too got as far as secondary school but couldnt cope,she loves her own company and she too,( thers a lot in common here) spenda all day on computor and tv,although is very very obsessed with the twilight books.

i'm sorry really unable to offer much advise as going through it and all very new to this but can say know how you feel eggshells is an understatement sometimes :tearful:

we too have been told things like social services may be able to offer some respite,we were then told she may not tick all the boxes :wallbash: and we not be able to get any help,but the big problem with that is my dd will not see anyone,shes just not interested in meeting anyone ,she does have 1 friend whom she sees approx once a month,but wont go out anywhere or see anyone :tearful:

as said know what you are going through and very hard sometimes,but have also found this website great for getting advise and letting you know you are not alone

take care regards julia

 

 

 

If after a child need assessment says her support should be Sessional work, respite, actitives, respite for you, then no matter what box she ticks or doesnt tick, they need to put that in place, they can not use excuses such as she doesnt meet the critieria, or she is too bright, or she isnt physically disabled, bottom line if she has needs and requires services and resources you need to keep fighting, J has a sessional worker who had been involved with J throw a service J was using, they set small tasks and built up a rapour, the sessional worker is highly trained and skilled in both children and adult mental health, Autism, and other disabilites, it takes time and a match of personalities, Once his Sessional worker couldnt make it and SS sent another one and they didnt click at all, the worker didnt understand my son and he didnt meet his needs hence I put in a complaint and its never happened again and only meets his original sessional worker.

 

If your not happy with a service that you feel should be supporting you you need to put in an appeal and a complaint, you need to take it all the way throw the system to get what you feel your family require.

 

Bottom line is if there is a NEED then that has to be met, no matter what!

 

If you need further information call NAS and Contact A family and they will assist you throw the process.

 

 

JsMum

Edited by JsMum

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i
used to be agressive,violent and flip over the smallest of things like your daughter and it end up resulting in a meltdown lasting hours would become 'out of control' and dangerous quickly so can personally understand your experiences and situations i would either ring or email the NAS and ask for there help and advice they can do an assesment and get help and support for you and her tell you bout local parent support groups so you gain more information and advice from others going through similiar thing

 

her displaying these negative types of behaviour could actually be hiding behind a MH problem like depression in the background anger can be physical sign to this so it needs to be looked in closely

 

http://www.asdfriendly.org/board/index.php?showtopic=20556

 

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=2186

 

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=797&a=18894

 

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=2176

 

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=297

 

http://www.autism.org.uk/nas/jsp/polopoly....=734&a=8471

 

http://www.autism.org.uk/helpline

 

http://www.autism.org.uk/contact/email

 

have other related disorders been looked into such as ADHD ODD PDAS ??? all connected and linked to the autistic spectrum has medication been thought about as an option? is your daughter with local MH team or ASD team?

 

i'd go to your GP and have a word about seeing what around your area that could benefit you and her as he could refer you or suggest some other ideas you havn't thought of!

 

take care

good luck with everything

 

XKLX

 

Hi Thank you very much for all the links. I find that in Scotland there is a bit less in way of resources but I will take a further look at the book to buy. It is such a shame for kids like my daughter, she is so bright yet she will without a doubt miss out on her full potential due to lack of assistance in education.

 

As for her aggresive side I do think it is getting steadily worse and possibly due to puberty. But I have also said to the GP for years, even since she was around 5 years old, that I think she is depressed. I am going to see my GP tomorrow hopefully (for myself), I am finally at the end of my tether and I may mention again that I think she is very sad. She has very low self esteem and no confidence whatsoever but I have spoke about medication before to my GP but as usual it is handed back to someone else to deal with and in her case it is her psychiatrist. She is never around and in fact I we are still waiting to see her over two weeks after a terrifiying weekend which had the cops and an ambulance at my door!!!!

 

Anyway I will kee you informed how I get on and thank yu very much for your help. I wish I had joined this ages ago!!!

 

Karen x

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Has your dd got a statement for school?

 

Has your daughter had an assessment from Social Services as she has a disability she is a child in need and should recieve a full assessments of her including Rectrational and social activities, my son has a sessional worker, when it work and its in place it really benefits J considerably and really assists my own abilities to take care of J when he is home as he is in a residential school because he had massive anxieties too when in mainstream and couldnt cope, he did have time off school via the gp but it ment I had to deal with J all on my own, so we tried Part time school, in year 6 he managed just a month of school in a Whole year with him fight against it everyday, he recieved additional mental health diagnosis because of the trauma he wasnt accessing any mainstream activities and so we fighted for a residential specialist school as he required a 24hr curriculum, we won that after a year long fight, some children require a very specialised enviroement, he is now settled in his school after been there a year and is excelling in science and PE.

 

It is not easy to get the right support but I would start with an assessment of SEN and an Assessment of Child In Need.

 

Also a carers Assessment if you are a paid carer from carers allowance, anyway for further support I traditionally recommend contact a family.

 

http://www.cafamily.org.uk/families/index.html

 

Her struggles sounds like much of is because a lot of it has become a cycle, her behaviours have become habbit and her Anxieties, fears and phobias are disabling her abilities.

 

JsMumxxx

 

 

Hi

 

Thanks for your advice but I think in Scotland the service provided is lacking and I have never been made aware of anything called a statement???

 

We have been going through hell for over a year, social work have been involved twice through the Childrens Reporter because she was not attending school. The twice they have been involved twice they have walked away saying they are not suitable for us. I wonder sometimes if they are waiting for something to happen like my daugher self harming, battering her brother or me turning to drink or drugs!!!!!

 

I am going back to my GP tomorrow and we have a meeting at school this week, I will also be calling social work again as I expected a call last week from the disability social workers which suprisingly didnt arrive. It is so difficult to get help.

 

Thanks

 

Karen x

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i had police and ambulance at our family home very distressing for everyone involved i have low self-esteem what happened at the weekend then??? i found mine situation with anger agression violence and MH probs increased alot during puberty stage because it heightened anyway with being a teenager having AS adds fuel to the fire and it explodes out of control fast and you feel helpless lost confused so many mixed emotions and feelings expressed through physical side emotionally /mentally the system is 'blocked' in her head and can't explain properly in words which AS does to you though not an excuse but a justifable reason to the situation arisen!

 

you need EMERGENCY appointment with pyschtrist she seeing and explain the urgency of treatment and how it getting dangerous and increasing rapidly and you need state you think medication would help calm her down or i would take her up A n E hosp and state you case there or social services /NAS do you think she was depressed at 5 years old? what age was your daughter officially diagnosed? AS can make you feel messed up play around with your emotions/feelings leave you were you just don't what to do or where to go who to talk to who understands or anything?! so frustrating grrr.....

 

is she danger to herself? suicidal remarks? self harm etc

 

you need crisis help now i'd ring NAS for help and advice there'll point in right direction they also work in scotland all over really! call parent line ad can talk to volunteer parent who understands fully!

 

take care

K

has she got an IEP set up in education system or SENCO at school you could voice your concerns too? she may need one to one support set up in place for her!?

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Hi Karen,

 

Welcome to the forum and good luck with the meetings and appointments this week. I think many of us have faced the :wallbash::wallbash: situation with professionals and understand how you feel. You have to keep on persisting but it's very wearying, isn't it.

 

There are a few members here from Scotland too. Also take a look at the following links which are specific to Scotland - you might find something useful.

 

http://www.asd-forum.org.uk/forum/index.php?showtopic=20379

 

K x

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sorry karen I do live in England and so was talking from that perspective, and understand it is different in scotland, my opologies there, here is more advice on contact a family.

 

http://www.cafamily.org.uk/families/rights...n/scotland.html

 

I recieved a lot of help from them, also NAS may also be able to assist you further with the scotish educational system.

 

Sorry if I have caused you any additional distress with suggesting statements and assessments when its a different set up in scotland, I just want to say too that though Ive got throw the English educational system and social services none of it was easy, as others here will agree, Ive had to fight hard all the way and I nearly didnt make it either, I do understand your frustration I really do.

 

Hope that the link helps you out tomorrow,

 

Good luck with everything

 

JsMum

 

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sorry like JS mum i put contact details for england here's NAS scotland for you instead sorry bout the muddle up in beginning:

 

http://www.autism.org.uk/contacts/scotland

 

i think like JS mum said they'll be able to give you support help and advice on education system based on her individual special needs but also help with whole situation going on at the moment in general though!

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sorry karen I do live in England and so was talking from that perspective, and understand it is different in scotland, my opologies there, here is more advice on contact a family.

 

http://www.cafamily.org.uk/families/rights...n/scotland.html

 

I recieved a lot of help from them, also NAS may also be able to assist you further with the scotish educational system.

 

Sorry if I have caused you any additional distress with suggesting statements and assessments when its a different set up in scotland, I just want to say too that though Ive got throw the English educational system and social services none of it was easy, as others here will agree, Ive had to fight hard all the way and I nearly didnt make it either, I do understand your frustration I really do.

 

Hope that the link helps you out tomorrow,

 

Good luck with everything

 

JsMum

 

Dont worry about it, you have not caused me any more stress. I will have a closer look tomorrow at all the advice and links to books etc. I will keep fighting, it is hard but she is all I've got fighting her case. All your stories make me see it is worthwhile to persevere and become a total pest to some!!

 

Thank you to everyone so much for the lovely welcome and I look forward to providing some advice in the future.

 

I will keep in you informed as to how I get on this week. Its difficult becasue it is so many seperate issues being dealt with. This week is eductaion and hopefully the psychiatrist if she gets back to me!!!!

 

Thanks everyone xxxxx

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Hi, again, it is difficult especially when there is so many issues to sort out, break them down and look her needs in small portions, her biggest issues at the moment is her Aggression and Depression, I would try and get the psychiatrist to sign her off school all together.

 

In the meantime the Ed psych will have to assess her additional needs as well as her AS, this is very common in children with ASD who have not accessed the correct support in a mainstream education that takes into account her AS, I strongly feel that Anxiety and Depression are a secondary illness.

 

At school look at her envireoment, her social development, interaction, communication, the way she communicates, expresses her feelings, or lack of it if she withdraws.

 

I took a gernal book out with me everywhere and a pen because things would be imediately obvous but found it difficult to write it down later so I would keep a gernal so I could write at any time, even 3am in the morning.

 

Write down a list of what your daugter NEEDS, right now, after new year, and then 12 months down the line if things progressed/deteriated.

 

What support in the home your daughter NEEDS from social services so a sessional worker, social groups spersifically aimed at social and communication needs in children, NAS may know of any local organisations too but what the social services can offer you as a family.

 

And a parent group for you to access for additional support.

 

Then for the Pychiatrist write a list of your main concerns and write what you expect from him/her, it may be councilling, behaviour cognitive therapy, play therapy, art therapy, or medication and his support and reports made for education support.

 

Put it all in writing and send them the relivant people, even if they refuse, or decline or ignore, what matters is you have continued to show your concerns, request treatment and support and if they refuse they are not meeting her needs then it will become vital evidence to ensure that your daughter gets support in the end.

 

I felt it really helped me, I was already exhausted, but writing it all down and breaking it down into smaller issues and spersific proffessionals was good therapy for me.

 

JsMumxxxx

 

 

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Hi, again, it is difficult especially when there is so many issues to sort out, break them down and look her needs in small portions, her biggest issues at the moment is her Aggression and Depression, I would try and get the psychiatrist to sign her off school all together.

 

In the meantime the Ed psych will have to assess her additional needs as well as her AS, this is very common in children with ASD who have not accessed the correct support in a mainstream education that takes into account her AS, I strongly feel that Anxiety and Depression are a secondary illness.

 

At school look at her envireoment, her social development, interaction, communication, the way she communicates, expresses her feelings, or lack of it if she withdraws.

 

I took a gernal book out with me everywhere and a pen because things would be imediately obvous but found it difficult to write it down later so I would keep a gernal so I could write at any time, even 3am in the morning.

 

Write down a list of what your daugter NEEDS, right now, after new year, and then 12 months down the line if things progressed/deteriated.

 

What support in the home your daughter NEEDS from social services so a sessional worker, social groups spersifically aimed at social and communication needs in children, NAS may know of any local organisations too but what the social services can offer you as a family.

 

And a parent group for you to access for additional support.

 

Then for the Pychiatrist write a list of your main concerns and write what you expect from him/her, it may be councilling, behaviour cognitive therapy, play therapy, art therapy, or medication and his support and reports made for education support.

 

Put it all in writing and send them the relivant people, even if they refuse, or decline or ignore, what matters is you have continued to show your concerns, request treatment and support and if they refuse they are not meeting her needs then it will become vital evidence to ensure that your daughter gets support in the end.

 

I felt it really helped me, I was already exhausted, but writing it all down and breaking it down into smaller issues and spersific proffessionals was good therapy for me.

 

JsMumxxxx

 

Hi JsMum

 

Thanks for that advice. I know it needs to be broken down it is just too big a problem when it is all lumped together.

 

I went to the GP tonight and he basically said he has symathy for me and her but I need to go through the psychiatrist as she should be the one co-ordinating the help and who should be helping. No good when she works part time, and is never availabel. We have an appointment for later this week but that is 3 weeks after a major event which has really shook us all up.

 

I am going to get a book of paper and start writing tonight. Im going to go to the meeting this week and have a wish list of what I want (not saying I'll get it!!).

 

It's great being on this forum hearing other peoples experiences and how they coped when things got bad.

 

Look forward to the time when I can be of help to others too.

 

Thanks

 

Kx

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