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Struggling to diagnose

gem274gem274 Member Posts: 8
My daughter has recently been assessed by Educational psycologist and Occupational therapist and they have gave me the following info:-
O.T

Very Poor concentration,difficult to follow instructions, found it difficult to filter out irrelevent auditory and visual enviromental factors during assessment, she required alot of verbal prompts and demonstrated some motor planning difficulties, poor desk posture and couldnt sit still, found it difficult to write on the lines and required prompts to leave finger spaces. she didnt always stabilies paper with right hand (shes left handed) when drawing, difficulties with following simple instructions, motor planning, concentration and diffictulty intergrating her visual and motor perception and fine motor tasks.

E.P

poor comcentration, lack of social expectations, vunerable, more comfortable with adults than children, poor awareness of safety issues, high level of concern about her progress, eaisly distracted, requires high level of differentiation in order to access a mainstream curriculum, social vulnerable, goes off in her own world.

Please can someone help me understande what all this mean, clearly i know what its saying but what is wrong with her. Nobody seems to put a name to it. We are still waiting for assessments from clinical psycology and speech and lanuage as she dosnt have the sailent feature when asked to discribe a word??????

i would really appreciate if any can suggest anything as ive been trying to get answers but never get anywhere.

Many thanks

Gemma

Replies

  • MaidoftheMoorsMaidoftheMoors Member Posts: 5
    Dear Gemma
    I expect that no-one has put a name on it yet, because, from the above information, there could be many explanations. The Paediatrician will need to take this information and any other reports, plus his/her own observations, into consideration to come up with the diagnosis. One possibility for you to look at if you want to do that prior to formal diagnosis is Dyspraxia - but it might not be this. Others include sensory processing disorder (see http://www.sensoryintegration.org.uk/what-sensory-integration) and the above being features of other conditions.
    The good news is that the above difficulties could be treatable. Have the professionals made recommendations? For example, I would suggest that OT/ Physiotherapist could provide games/ exercises and direct treatment via exercises/ games to help with your daughter's motor development and co-ordination/ bilateral integration (the two sides working better together) and handwriting. Therapeutic Listening (see www.vitallinks.net) if available or similar could help distractibility - from specically trained OTs or Speech Therapists. Management strategies could be used in class to help reduce the impact of distractibility. And, there are arguments for Teaching Assistant support to help her in the classroom and school.
    I wish you and your daughter all the best and hope this goes some way to helping you understand what is happening and the process.
  • gem274gem274 Member Posts: 8
    Dear Maidofthemoors,
    Thanks for the infomation, dyspraxia is the first thing i thought when i had a look at different types of learning disabilities. I will have a look at the sensory processing disorder. They have made plans and OT is going into school to do a block of six weeks work with her then they will pass it on to her T.A to carry on the work. Also she has a resource agreement and has been awarded a T.A for herself for 15 hours per week. Can i just ask what is the treatment, is it just therapy? What other Learning disabilities could she have because there are some systoms of dyspraxia that she dosnt have. it does answers a few questions so thanks very much, its just so fustrating have to wait for all these assessments to be done. do you know how long it takes Clinical Psychology to do there assessment? She has been reffered to them for her social development as she dosnt play wwith the other children in school.

    Many thanks

    Gemma
  • gem274gem274 Member Posts: 8
    Hi,

    I have spoken with the peadiatrtion today and she has basically said that shes going to get a second oppinion from her celleges as she wants to be sure as there are a few things it could be. She also said that they might not be able to diagnoise anything as she may just have overall development delays? Can anyone please explain what this means and what the future means? i always thought that it would be a type of disability not a overall delay. she also didnt know which would be the right place to reffer her to either clinical pshyc or social communication team (specialises in autism)

    Many thanks

    Gemma
  • Natasha BrownNatasha Brown Member Posts: 112 Courageous
    i think you also need to go back to them and say ok - so this is how she is -= what are the strategies that we need to employ at school and home?
    what do you recomend?
    how can we ahlp her cope?
    how can we help her to learn?
    what concretely is needed - how much and when and how ?
    labels can be helpful eg dyspraxia, ASd etc - but more important is what are the strategies, what does she need at home and school to get by/cope/learn?

    i did read the reports as pointing to dyspraxia and reading up on dspraxia might help understand her more.
  • gem274gem274 Member Posts: 8
    hi natashailg,

    thanks for your comment school are doing everything they can and i am at home aswell, so i know what to do to help her and school are. i suppose i just want some answers as i have always had questions from her being about 4 months old and i have never had any answers its just a "well lets just wait and see" i feel that all this "wait and see" may have caused her to fall more behind than she may have been.

    thats what a lot of it is about i want to know what shes got so i can learn about it and then find more ways to help and maybe have a bit of an insite as to how her future may be.

    Many thanks

    gemma
  • JimJamsJimJams Member Posts: 175 Listener
    Hi , I am sorry to hear you are at the stage of not having a diagnosis, things will get better when you get an answer and the correct treatment can begin, I recognise a lot of what you are going through, my son has autism and some of your daughters symptons sound similar and I always asked every professional I came accross, what will he be like when he is older and they just dont tell you their professional opinion as they are scared they will get it wrong or you may not try so hard to help your child develop. I hope you get the help and the answers you need , no matter what they say, just remember, your child makes you happy and she will surprise you in many ways and make you so proud, take each day as it comes and try to have as stress free a day as possible. lots of luck for the future to you both
  • gem274gem274 Member Posts: 8
    Hi Marie thanks for your comment, truthfully if it wasnt for Libby smiling and just being her i dont know what i would have done really, im so so proud of her its unreal. i know that everything is in place to help her but i carnt explain why i just want to know what shes got, its a reason an explanation i just dont know. The professionals just have the attitude that, well shes getting all the help she needs so that should make me happy but it dosnt. dont get me wrong i am soooo glad that after 3 years of pestering school she is now getting the help she needs but its still not answers its just what we are going to do. i hope this makes sense dosnt it to you as u have been here did u need the answers? sorry for going on its such a long progress and we have fot alot more to do yet.

    many thanks
    gemma
  • BernardBernard Member Posts: 3
    I know how you feel having no diagnosis. It's distressing not to be able to see a clear way forward. We had the same with our son who had profound and multiple learning disabilities. He had no actual diagnosis for all his 29 years. It took us many years to come to terms with this and understand that the 'professionals' had little more understanding of what was wrong than ourselves. The reality is that you are probably the best expert in your own child's condition and should be recognized as such. You probably understand more about what works for him/her than many of the health professionals. The diagnoses are sometimes useful 'labels' to get access to services, so use them when you need to.
    Having the confidence in what you think will help and then calling on the advice of the professionals as you need them is very hard when you've no formal training or qualifications - but people will eventually realize that you are the expert. The ones that don't value your input are probably not likely to be very helpful anyway.
    I'm sorry I can't give any easy answers but the reality is that often the professionals are flailing in the dark more than you are. A consultant told us that 30% of people with a neurological condition have no formal diagnosis (there's even a support group for undiagnosed!) the key thing to remember is that it isn't the label that matters, it's what you and others do about making the persons life better that counts. Sounds to me like you're doing a good job there.
    Bernard
  • SWANUKSWANUK Member Posts: 11
    hi there, I'm lauren and i'm the coordinator for SWAN UK. We support families who have children with undiagnosed genetic conditions - some of this children have complex medical health needs and others have been told things like their children have global developmental delay. This basically means that a child is not meeting their milestones (things you expect children to do at certain ages) in one or more areas.
    It can be a very worrying time whilst you are going through the process of diagnosis and very confusing.
    Some of the families we work with may never get a diagnosis as their child has a very rare condition - this means that although the child obviously has difficulties the underlying genetic cause for these problems can not be found.
    Bernard is correct that many children don't have a formal diagnosis and this can cause lots of issues for families but you should know that you are not alone - there are lots of other families like you out there.
    if you would like to be able to chat to some of the families we work with they may be able to offer you some information and support as many of them will have been in similar situations to the one you are in now - you can find us on Facebook (www.facebook.com/SWANchildrenUK) or read some of their stories on our blog www.swanuk.wordpress.com.
    do get in touch, take care, lauren
  • gem274gem274 Member Posts: 8
    Hi all, just an update really on what has happened over the last couple of months. Libby has recently had an assesment from the sact team and they have said that they dont feel that libby needs there sevices as she is behind in everything and all her delays are at the same level so she is just like a younger child than she is which they think is due to her epilepsy when she was a baby. On a more possitive note she is making good progress in school with all the extra support in school and her teacher is hoping that she will move up a level by the end of the year!! : )

    School have recently had me in for Libbys twin as they thnk he may have adhd so now i have to go through it all again with him and they said they want to get my younger daughter assessed by EP as she isnt making any progress either!!

    I just want to say a big thanks you to u all for all the support u gave me as at the time i started posting i was getting in quite a state about it all so

    THANK YOU

    Gemma
  • josfromglosjosfromglos Member Posts: 19
    Thank you Gemma for starting this topic, and thank you Lauren for mentioning 'Global Developmental Delay' in your reply.
    I recognize a lot in the description of your daughter's behaviour Gemma and I fully understand your doubts about her future (and perhaps not only hers).
    My daughter has been at a special school from the very beginnning ('diagnosed' with GDD at a very early age, next to having sporadic minor epilectic seizures). I cannot help thinking at times that she might have developed more intelectually if at a 'normal' school, but other health issues within the family did not make us think twice when offered a place at this special school.
    The choice is very black and white when it comes to choosing the right school for your child. You either opt for a school where you (and perhaps your child too) might be overwhelmed by a variety of other (sometimes severe)disabilities, or he/she goes to a normal school and might feel lost.
    I must stress that my wife is convinced that we made the right 'choice' but I personally would have liked a school for children who MIGHT be able to achieve a reasonable level of independence without being distracted by other children 'on both ends' (if you know what I mean).
    I hope I have not insulted anyone, I did not mean to!
    Regards Jos.
  • gem274gem274 Member Posts: 8
    Hi jos thanks for reply im sure u havnt insulted anyone by ur comment. i have also thought alot about this as school have said that they will see at the end of year 6 weather libby needs a special school or a mainstream one andi have had the same thoughts myself! None of the professionals have mentioned GDD they just say she is behind in everything so ill wait untill i see the pead now that she has been acessed.

    thanks again
  • SWANUKSWANUK Member Posts: 11
    Hi Gemma, I'm really pleased to hear Libby is doing well at school!
    Jos, I'm sure you haven't offended anyone, it can be really difficult deciding on the right school, for some families it can take a couple of schools before being happy with the choice. I'm not sure what the provision is like in your area but sometimes there is the option of mixing between special and mainstream - usually via special unit on a mainstream site so the children can have lessons mixed between the two. As I said though this often depends on what is available locally. It's often a good idea to visit as many places as possible and talk to other parents to see how their children are getting on.
    Gemma - let me know if you need anymore information after you have spoken to your aped.
  • gem274gem274 Member Posts: 8
    will do lauren, once again thanks
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