Need advice :(

teabag29

Ok some of you may remember I posted about my dd (13 next month) and all the issues i'm facing with her. She's always been terribly behaved (not as much as school but lets it out when she gets home), very behind in her learning, has limited sense of danger, sensory problems, food obsession, cannot get on with other children, constantly lies and steals, takes everything literally, talks to herself constantly, refuses to bath, no empathy, hand flaps when excited, cannot deal with change in routine and gets very very badly behaved and anxious, severe sleep problems (always last to sleep and 1st awake....hospital couldnt even scan her as she wouldnt go under the anaesthetic)....actually theres so much i'd be here all day writing. Already at age 12 shes been arrested for shop lifting food and banned from shop, skiving school and pushing someone off a ladder. She is very easily lead and doesnt understand danger at all (e.g walks into the road without even looking).

Basically i have been fighting to get her help since last year and so far ive had an ep report which highlighted she may have dyspraxia and needs more help at school or she will get a clinical disorder (all her levels cam ot as below average or seriously below average, her memory is at age 5 and her reading and spelling is at age 8, everything else is around age 7). School say they are meeting her needs and refuse to give her anything other than i hour literacy help a week due to no funding grrrr....

So camhs have now discharged her as the say they dont feel she has any psychiatric problems and feel her symptoms arent consistent enough that she has asd (which is what i suspected)....they were taking it very seriously until the ep report came through then they said its all down to learning problems and its up to the school to hep (for the recors, the consistency thing im confused about as she has always been like this, we were told as a child she meets the characteristics for adhd but too young to diagnose)

On monday we went for her dyspraxia asessment and they said she hasnt got this (i was surprised as everything ive read describes her to a T). They chucked a ball which she caught and made her hop across the room and made her tie a shoe lace where each lace was a different colour and talked her through it and she was able to do it. She couldnt have done it with same colour laces though. They said her not being able to swim and bike ride etc is down to her not wanting too enough. I explained this is certainly not the case as shes desperate to learn and fit in and it really frustrates her (shes been having private swim lessons since last year but even the tutor says she cant do the 2 things together i.e. kick legs and use hands at same time).

Anyway I wrote a list of all my concerns and took it to the appt and they have referred me to a paediatrician but said its unlikely she has anyting wrong its just to put my concerns at ease. This is basically the last chance for help and if he turns me away then thats it. Is there any advice anyone could give me? My daughter did have to live wih my mum at age 2 for 6mths due to her father abusing my son and he wouldnt admit to it (so they had to remove her for her safety until he was found guilty). Because of this i think the professionals are assuming its down to the time she was parted from me and shes going to have issues, however i disagree. Firstly she was always different even before this point (i.e. didnt walk until nearly 2, had no speech and had to see a speech therapist, terrible balance, hyper behaviour, walking on tip toes etc). Secondly she was so young when she lived with my mum she doesnt even remember any of it and i saw her for 4 hours every single day.

Ive heard of attachment disorder when a child under 3 is separated from their mother and i think the only reason the dyspraxia ppl are referring me to paediatrician is just to make sure there are no attachment problems. I feel lost, i just want someone to help me in how to deal with her behaviour and help her with her learning as its causing so much bullying

My worry is what do i do if the paediatrician turns me away aswell?

rogerblack

Some of the symptoms mentioned above may support a claim for DLA.
Though I'm not sure what level of award.

OneYorkshireLass

It's tough to be awarded DLA without a diagnosis - which is why most people want to be labelled

Did your daughter ever crawl, teabag? Or did she just go from sitting/pulling up to walking at age 2?

What does your GP think of this? If it's possible, instead of just telling the GP what she does, how about filming her on a video camera and showing the doctor?

I doubt she has dyspraxia, it sounds more like typical autism.

To be frank, you'd be better off finding a private psychologist and paying for an assessment yourself. You'd get much further, and get there much quicker!

jennie-jack

you dont need a diagnosis for dla, she obviously sounds like she has care needs which is what matters. we did the videoing which helped our case a lot as they can see exactly what it is like.

chivers1977

Teabag has already got DLA - her post isn't about DLA.

Teabag I have posted to you before. My DS is under a paediatrician (developmental paediatrician) to assess for ASD. My son's issues seem more minor than your DD but it definitely looks as if we are heading towards a dx. I am surprised given your list of issues that they are saying that it is not ASD. Hopefully the paed will be able to see it from a more rounded perspective. In our PCT, we have a social communication clinic where the paed, ot and SLT all assess various children on one morning together following all of them previously assessing him individually and then they meet to make a DX.

FWIW the NHS OT said that DS didn't have dyspraxia. We went to a private OT who specialises in sensory issues as well and her much fuller asssessment proved that he had dyspraxia and sensory processing disorder

Don't give up! (((hugs)))

teabag29

chivers1977 wrote: »

Teabag has already got DLA - her post isn't about DLA.

Teabag I have posted to you before. My DS is under a paediatrician (developmental paediatrician) to assess for ASD. My son's issues seem more minor than your DD but it definitely looks as if we are heading towards a dx. I am surprised given your list of issues that they are saying that it is not ASD. Hopefully the paed will be able to see it from a more rounded perspective. In our PCT, we have a social communication clinic where the paed, ot and SLT all assess various children on one morning together following all of them previously assessing him individually and then they meet to make a DX.

FWIW the NHS OT said that DS didn't have dyspraxia. We went to a private OT who specialises in sensory issues as well and her much fuller asssessment proved that he had dyspraxia and sensory processing disorder

Don't give up! (((hugs)))

No my dd never crawled she bum shuffled though then started to stand holding onto furniture and didnt walk until around 18mths. She had speech therapy for 18mths at age 4 and paediatrician said she had characteristics of adhd aged 3 but too young to diagnose.

I asked the ot about sensory processing disorder but she said something about not being comissioned in this area to carry out tests for it or something, she said she will add my dd's name to the list of other children testing for it will benefit but thats all she can do.

chivers do you think the paediatrician will look at this from as a blank page i.e. listen to my concerns and the history and take it from there or do you think he will see that shes seen so many professionals already and so if there was a problem such as asd it will have already been picked up on. I feel this is my last chance to get help for her as everyone else has dismissed her but how do i get the paediatrician to see that she has problems and is not like other children. I dont want to come across as though im a parent just looking for something to be wrong because thats not rhe case, i know my child and she has always been different. Written down it seems so clear given all her issues that something is wrong, to me it points to asd but each ageny seem to just want to dismiss it and pass me onto another professional, and now the paediatrician is my last hope. I just hope he doesnt write her off too

Regarding the asd camhs seemed to be taking me seriously until they saw the ep report and once they saw that they said its just learning difficulties and changed their view, they said its not consistent enough to be asd....i'm not sure what they mean by this as dd has always been like this, its not something thats just come on recently, its just i was never courageous enough to seek help. I think it may be becausae school have prtrayed her as an angel at school (not a truthful portrayal by any means- they also said she has no learning needs!). Even so its common for kids with asd (aspergers anyway) to hold their behaviour in at school and explode when they get home.

The o.t said she doubts dd has asd as at the appt she didnt have any probs with social communication. I explained that she is able to talk to adults if she feels comfortable with them (mostly only females and only when im with her) but cannot get on with other children or adults she doesnt feel comfortable with, instead she gets very anxious and walks up and down talking to herself fast.

teabag29

chivers1977 wrote: »

Teabag has already got DLA - her post isn't about DLA.


FWIW the NHS OT said that DS didn't have dyspraxia. We went to a private OT who specialises in sensory issues as well and her much fuller asssessment proved that he had dyspraxia and sensory processing disorder

Don't give up! (((hugs)))

With regards to getting a private asessment, i have thought about this but my concern is do people (i.e. the school, doctor etc) generally take this into consideration? I 'm sure I heard that somebody did this and it was seen as the parent trying to pay to get the result they wanted and so the report was not looked upon?

robus

chivers1977 wrote: »

Teabag has already got DLA - her post isn't about DLA.

Teabag I have posted to you before. My DS is under a paediatrician (developmental paediatrician) to assess for ASD. My son's issues seem more minor than your DD but it definitely looks as if we are heading towards a dx. I am surprised given your list of issues that they are saying that it is not ASD. Hopefully the paed will be able to see it from a more rounded perspective. In our PCT, we have a social communication clinic where the paed, ot and SLT all assess various children on one morning together following all of them previously assessing him individually and then they meet to make a DX.

FWIW the NHS OT said that DS didn't have dyspraxia. We went to a private OT who specialises in sensory issues as well and her much fuller asssessment proved that he had dyspraxia and sensory processing disorder

Don't give up! (((hugs)))

That is how I read it!

The poster does seem to be having a lot of problems.

I can fully understand the frustration in trying to get help, but I do have a question, what good does getting DLA mean? It's not a money thing at all, its help on a medical/psychiatric/social level that she needs.

I have never been able to understand this - no money in the world is going to help the OP get the help she needs.

To me it just seems that people think that an illness = disability = pot of money!! Why??

Take my problems which I won't go into, but being told that I could have £100 a week DLA does not help me in the slightest. All I need is medication, professional medical and psychiatric input and self determination. None of that costs me anything.

However I do accept that there are those that need extra money to buy in a care package etc. Surely financial help should be geared to what the individual needs not an across the board payment that everybody gets. More effort should be made to identify the needs and if that requires some financial assistance, then it should be paid.

teabag29

robus wrote: »

That is how I read it!

The poster does seem to be having a lot of problems.

I can fully understand the frustration in trying to get help, but I do have a question, what good does getting DLA mean? It's not a money thing at all, its help on a medical/psychiatric/social level that she needs.

I have never been able to understand this - no money in the world is going to help the OP get the help she needs.

I do get dla but this post is not asking about dla so not sure why yo're asking about that.
And actually you are wrong, the dla I get does help. It helps pay for the things my dd breaks with her poor behaviour, extra washing when she wets the bed, extra after school tuition as the school arent helping her, private swimming lessons to help her lean to swim, transport as she has no sense of danger, a tv in her room as she doesnt go out often due to her lack of friends and limited sense of danger, occasional courses to help with her self confidence as she has very low self esteem and to get her mixing with other kids. It helps immensely, which may not directly help her psychologically but I have no doubt helps her in the long term with her learning and self confidence.

robus

teabag29 wrote: »

With regards to getting a private asessment, i have thought about this but my concern is do people (i.e. the school, doctor etc) generally take this into consideration? I 'm sure I heard that somebody did this and it was seen as the parent trying to pay to get the result they wanted and so the report was not looked upon?

Yes you are quite right in thinking that way.

Private assessments can be seen as - money buys the report you want and need!!

We have a poster on here that regulary buys in private psychiatric reports to support claims for DLA & ESA. Why you may wonder? Generally because a private report is more likely to be favourable to the person that is paying the fee than a bog standard NHS one.

So yes it can easilly be seen as a way of manipulating the system to your own advantage. That is unfair to all of the others that don't!

eskimo26

robus wrote: »

Yes you are quite right in thinking that way.

Private assessments can be seen as - money buys the report you want and need!!

We have a poster on here that regulary buys in private psychiatric reports to support claims for DLA & ESA. Why you may wonder? Generally because a private report is more likely to be favourable to the person that is paying the fee than a bog standard NHS one.

So yes it can easilly be seen as a way of manipulating the system to your own advantage. That is unfair to all of the others that don't!

Based on what experiences please?! Or are these just your thoughts on how it it is seen by yourself in which case we'll add a nice pinch of salt.