how do you get help?

[loobylou2]

Hi reading through the topics made me realise you all have a lot of professionals involved. Can I ask how you got this help? my daughter was diagnosed by the CAMHS team last year with aspergers. then earlier this year they decided that she has bipolar disorder as well. the only contact with an 'expert' is monthly meetings with a psychologist who adjusts her bipolar medication and sends us off on our merry way again! Her school have put her on the special needs list, but as she is high functioning, don't seem to do much with her. She finds going on the school bus a couple of times a week triggers off manic episodes and coping with pupils at school really hard. she says school is great its just the other pupils that make life hard! mufti days are a nightmare as she can't decide which clothes are right she also has colthes for going to different supermarkets and panics if we change our minds and go to a different one as she thinks everyone will notice she has the wrong clothes on! so who do we ask for extra support or are we not entitled to any?

Loobylou

[Guest Lya of the Nox]

do u get dla, carers? ( financial help)

if she needs more support push cahms for it, she is entitled

tell school how much she struggles

does she see a community pych nurse? can they help

are there any parent support networks around you

i have none so they are stuck with my ramblings here

x

[loobylou2]

Hi we get nothing at all! have tried pushing CAMHS and they just fob us off all the time, won't even refer us to a psychologist, just see the psychaiatrist. the school says they haven't noticed any problems there so not sure if she just thinks that nobody likes her. Can't tell really without being there with her. don't know about support groups, nobody seems to tell us anything and don't know where to ask for help!

[Karen A]

Hi loobylou2

.There are two basic routes to getting support although they overlap and some people have both to different degrees.

 

The first is SEN support in school-if you fel that your DS 's learning,experience of school or ability to paticipate in school is an issue.

If she is on the SEN register then she should have an IEP.The SENCO or perhaps form teacher should have planned it in consultation with you and your DS.

You should also be aware at what level support is provided [school action or School action plus].If you are not happy with the support being provided you could meet with the Senco to discuss it and ask for more support.Support provided by LEAs includes Educational Psychology and also Autism Outreach-teachers who provide support in school for teenagers or childern with ASD.It also includes support provided by school such as Learning Mentors or Teaching Assistant input.

 

The second is Camhs.The support provided by Camhs will ultimately be decided by the Psychiatrist.The level of support offered by Camhs does vary from one Health Trust to another.Some people here get a lot of input-some not much at all.The support provided for Asperger Syndrome is especially variable.If you feel unhappy with the support offered by Camhs the first option would be to ask the Psaychiatrist for a meeting to review it.If you do not get a satisfactory response then you can contact PALS [Patient Advocacy and Liason service] to decide how you can proceed.It is very likely that any services that Camhs provide will only be available on the basis that the Psychiatrist agrees that your child should recieve them.

 

There is a Charity ''Young Minds'' which provides support and information regarding Mental Health Problems incuding Bi-Polar.They offer an excellent telephone advice service for parents.If you check the ''Young Minds'' website the no is on it.They may be able to give you some support too.

 

 

I think that the different ammount of support provided to different individuals you read about on the forum is partly due to the very wide sectrum of need.

Some people have children or teenagers who are very high functioning and generally coping well with life hence few services are involved.

We also have some carers who support children with ASD,Severe learning difficulties and/or very challenging behaviour.Hence these families need a package of support from various statutary and voluntary services.

However as I have said the actual level of support also varies depending on where you live -and unfortunately how mch money is available.

Hope that helps make things clearer rather than more confusing.Karen.

[Karen A]

Hi again.I just thought the other place to look for information is the NAS website.The NAS now run social and support groups for AS teenagers in some areas.Karen.

[paulathomson]

another thing to bear in mind is that if you do not ask for support no-one will offer it...sometimes if a parent doesnt know what their child is entitled to they wont ''put you in the know'' ..so to speak..so find out everything you can...

 

i fought for a whole year to get my las support because he is high functioning and the school would not believe me..they wouldnt even give him an iep.. although once he was dx'd and i found out lots of information about what support he is entitled to ..mainly from this forum and NAS...i insisted on him having support and now he gets it..

[Karen A]

another thing to bear in mind is that if you do not ask for support no-one will offer it...sometimes if a parent doesnt know what their child is entitled to they wont ''put you in the know'' ..so to speak..so find out everything you can...

 

i fought for a whole year to get my las support because he is high functioning and the school would not believe me..they wouldnt even give him an iep.. although once he was dx'd and i found out lots of information about what support he is entitled to ..mainly from this forum and NAS...i insisted on him having support and now he gets it..

 

 

<'> <'> I smiled.Until 2 years ago I was one of those parents....never asked or bothered anyone.As you may be able to tell I am a cured now,...

[loobylou2]

Thanks everyone methinks its time to kick some ass! Will get on to the school later and see what they come up with as she really struggles with the whole friendship thing. Gets on fine with adults though, particularly men which could be worrying as she thinks she is wordly wise and really is very naive! Lets just hope she's had a better day today!

[JsMum]

Hello, your post intreaged me, you see its still really hard to get support even when your in the system, like you we are not getting anything from camhs only the offer of drugs, and J has already trialed them and they didnt suit him, I would like more therapies for him like ART, PLAY therapy, and its prooving impossible.

 

J has a social worker and everytime I struggle they comment on maybe they can get a service care in but they never do making me go on in extreame times of stress and exhaustion, its really unfair because I know that they know I will cope because the alternatives are more disaterous, but I have really tried this week to get some practical help and as yet not a dot.

 

The social worker is always off on training days and the ss hardly get back intouch, you have to do the running around, its so frustrating, but we are the lucky ones as J does actually have a social worker.

 

School I have to admit are been the most supportive and ensuring his social and emotional needs are understood but he does have a statement and he has support which makes a difference.

 

so push for an assessment of SEN.

 

You can ask your council social services to do a core assessment that looks at the needs of your daughter to see if there is any provisions out there that may support her, things like accessing recreation activities, a sessional worker, ect.....

 

 

Places I went to get the basic information was a list here.

 

 

CONTACT A FAMILY, Brilliant and loads of leaflets and booklets all sent to your door and great helplines.

 

Mencap, great for rights and meeting the needs of people with disabilities like AS and Learning Disabilties.

 

KIDS.

 

Sports Development programmes.

 

Positive Futures, programme.

 

OAASIS a website that helps partents find information on special needs related information.

 

I have had to in the past write letters of complaint, and in the process of a DDA claim because my area are still not meeting his needs under his disabilty.

 

it is very hard work to get the needs of SEN children because of policies the local authorities make where they say if he meets our criteria then we can help, problem is the criteria is unreachable for children with disabilties that are AS/ADHD/AUTISM.

 

If you feel your daughter is not accessing the support you expect then writing a letter of complaint to the service complaints system may be a way to help the department understand that your Daughter has needs.

 

One for sure the services will not bring the support to you, I am afaid that is left for the parents, carers which is why so many are without DLA, CARERS, Direct Payments, respite, care, because they do not even realise they may be entitled.

 

Attending a AS and Bipolar Disorder parent support groups are brilliant to attend to because these are normally the places you get to know what your childs rights are.

 

NAS do awareness day comfrences, they look into all these too, so do look into attending a HELP programme too.

 

Help certainly doesnt come with a diagnosis, you have to ask and even when you do, its not always given in the way you would expect them too.

 

Good look and I hope that once the information from CAF, NAS, MENCAP will be the beginning of help and support.

 

 

JsMum

[loobylou2]

ps whats an iep? sorry to sound thick!!!

[JsMum]

PS you may also be able to get some support for transport to school too, so do ask your local EWD for information on passenger transport, in our area it is called exceptional circumstances, because your daughter has difficulty with transport due to her Bipolar disorder there may be a possiblity they would look into a Taxi or other transport within there system.

 

Again ask about this withing your service area, your area may be different.

 

JsMum

[JsMum]

ps whats an iep? sorry to sound thick!!!

 

Individual Educational Plan.

 

it is a aims and target plan, meeting the needs of the individual person, so at an expectation of the child.

it usually details the support, provisions and gives details of the difficulties your child has and it will have a list on any diagnosis.

 

Advisory Centre Education website has a lot of information on SEN and a really good website that I have found useful.

 

JsMum

[JsMum]

Here is more information on IEP and Assessment of SEN.

 

The website is very good.

 

http://www.ace-ed.org.uk/advice/booklets/Assessment.html

 

JsMum

[loobylou2]

thanks! all these abbreviations can be soooo confusing! will check out the website. just to say this place is great and thanks to everyone for making me feel welcome and helping out!

Loobylou2

[JsMum]

thanks! all these abbreviations can be soooo confusing! will check out the website. just to say this place is great and thanks to everyone for making me feel welcome and helping out!

Loobylou2

 

If you need any further help with the assessment do come back.

 

You will be very busy now with the information, its a mind field. but so amazingly interesting and you wonder why the education, social, health dont help you, its wrong, but the multi agency meetings should be more about exchanging information on things like this.

 

I hope you get somewhere now.

 

JsMum

[loobylou2]

thanks you're right about it being a mine field! sometimes i just want to stop the world and get off for a while! we're really lucky that she can do alot of things for herself, i know there are a lot more hindered kids out there than her, but sometimes it makes it harder for other people to understand as she appears to be 'normal' sorry hate that expression but can't think of another right now! well i better go an make the tea before they all come home and i have to sort out todays problems!!!

[Karen A]

Hi.I don't know if you have found the Education Section of the forum.If you look at the start of the Education section there is info on IEPs and lots of other stuff to do with SEN.

[Clare63]

Hi loobylou,

Loads of great advice here for you to plough through. I have just started on this rocky road earlier this year and have basically found that you do have to "ask" for help/info etc., its hardly ever offered. I was told only this week that I have to fight for my child as no one else will..... a scary thought I know, but build yourself a support network and you will find a wealth of ideas and services available to you. You really must apply for DLA it can really help financially. If you are a little confused with all the abbreviations have a look at the "jargon buster" on the top right hand side of the forum, not only will it tell you what these things mean but also gives useful links for further info.

Good luck and most of all make sure you make full use of this forum its a God send.

Clare x x x

[loobylou2]

Thanks again everyone, wish I'd seen the jargon buster earlier!!!! It seems so wrong that we as parents aren't told about the help thats out there. Getting the right help and support can make such a difference to our kids and how the grow into adults. It almost seemms that because your child has difficulties they don't want to know unless pushed. Maybe its just me being oversensitive but thats how it seems to me! Yesterday wasn't so bad after all the docs have increased her meds and they seem to be kicking in after a month of nightmareish behaviour! fingers crossed for today!

[Karen A]

<'> I will be thinking of you.Karen.

[loobylou2]

well heres the latest! have just spent an hour filling in the dla form online so fingers crossed! the kids have come home early due to docs appointments, which involved two bus journeys home. got a text to say that she had lost her bus money and i've had to go an pick them up! wouldn't be so bad but i've seriously hurt my back and drivings really sore! she's as high as a kite went to get changed and came down wearing her pyjamas!!! now had a strop cos i told her to go and get changed and is currently taking it out on her sister! 'scuse the rambling but just had to get it off my chest! lets hope the rest of the day goes better!