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more help re my son possible diagnosis

I have posted about issues I have with my son many times my last is here https://forums.moneysavingexpert.com/discussion/5501990

I am reluctant to post on this board for fear of some of the responses but I want advice so I will have to take the bad (with hopefully some good) I welcome constructive criticism but respectably ask that you think before you post that there is a very scared/confused mother at the end of this.

background - will try to keep this brief

Son aged 5 first visit to pediatrician regarding possible issues. I did not instigate this, although I had voiced concerns to my health visitor and school. Questionnaire was sent to school who said they had no concerns. Behavior was put down to parenting and the fact me and his father had split.

Son now 9 still very difficult to parent, showing some issues at school but educational rather than behavioral. I decided I would get help so another appointment with pediatrician via GP referral. Again questionnaire sent out to school and school report no problems. This time the doctor decided they would send in an independent specialist to monitor him in classroom/play (he didn't know about this)

In the meantime due to pressure from me, school also got an independent doctor (regarding educational difficulties) to speak to him, although despite me asking they did not monitor him in classroom environment it was one to one. School doctor said he was very intelligent (top 1%) and no issues. I did question why if he was top 1% with his tests how come he is in bottom sets for everything and can't even form his letters / spell/ do simple maths calculations. Nobody had an answer.

Now to my point :)
I had a letter from hospital they think he has adhd. I don't, I have seen children with this on the tv. My son is more difficult than other children his age but he is not that bad. I really don't understand how can it be from the school saying no issues for 5 years suddenly after just one monitoring session from someone they think he has this?
I am so confused/upset I am well aware that his condition is miss diagnosed with bad parenting (what they said all along up until now).
I fought so hard for someone to tell me if there is an issue or not, now they have I don't want it :(. I am in two minds what to do, part of me wants to say thats not it we will manage like we always have he is still the same child as he was yesterday a 'label' doesn't change that he is still my boy. Then I think but at least with a diagnoses (whether its right or not) we might get help and at least I have more voice with the school to stop punishing him when he can't necessarily help it.

Whoops I said I would keep it brief that is far for that :o
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Comments

  • I'm sorry I don't have anything constructive to add, but didn't want to read and run.

    The most important thing to remember is what you said in your final paragraph - he is still your boy, and you will manage like you always have.

    The ADHD diagnosis will at least stop the 'bad parenting' hypothesis. It seems to me that there are a lot of people involved in his case and they are all trying to blame each other, and up until now the easiest person to blame was you. At least ADHD (even if it isn't entirely accurate) means they will have to do something to help him.
    No longer a spouse, or trailing, but MSE won't allow me to change my username...
  • Person_one
    Person_one Posts: 28,884 Forumite
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    It sounds like you've been pushing for a diagnosis, but you aren't happy with the one you've got.

    Did you have a different one in mind? Were you expecting something else specifically?
  • Mojisola
    Mojisola Posts: 35,571 Forumite
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    School doctor said he was very intelligent (top 1%) and no issues.

    I did question why if he was top 1% with his tests how come he is in bottom sets for everything and can't even form his letters / spell/ do simple maths calculations. Nobody had an answer.

    Could he just be very bored and/or frustrated?

    It's not unusual for very intelligent children not to respond to the normal mass teaching styles used in school.

    Has he been tested for dyslexia/dyscalculia? My son is very bright but was put in the lowest set because his dyslexia wasn't recognised by the school.

    Can your son have a serious conversation with you which seems beyond his years? If he tells you a story (rather than trying to write it down), is it imaginative and interesting?
  • theoretica
    theoretica Posts: 12,691 Forumite
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    What will the practical results of that diagnosis be, and do you think they will help your son?

    I know someone who had one diagnosis for about 30 years, which was then changed. Instead of an odd case of something commonish, she is now said to have a standard case of something much rarer. What I think may be relevant to your situation, is that actually the treatment and care she has had for the last decades was nearly unchanged from that of the newer diagnosis, and also that diagnoses can be updated.
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  • iammumtoone
    iammumtoone Posts: 6,377 Forumite
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    At least ADHD (even if it isn't entirely accurate) means they will have to do something to help him.

    Yes this is my thinking but at the same time I don't want him to go through life having this diagnosis if its not correct. He will have to live it with all through secondary school and beyond.
    Person_one wrote: »
    It sounds like you've been pushing for a diagnosis, but you aren't happy with the one you've got.

    Did you have a different one in mind? Were you expecting something else specifically?

    I do think there is something but not that. If they came back with dyspraxia/autism/aspergers I wouldn't have been too surprised but this isn't something I had even considered. Its not so much I have been pushing for a diagnosis I have been pushing for help, sadly it seems these days you don't get that without a diagnosis. Mainly I want the school to help him in to stop punishing him when some of his behaviors might not be his fault.
    Mojisola wrote: »
    Could he just be very bored and/or frustrated?

    It's not unusual for very intelligent children not to respond to the normal mass teaching styles used in school.

    Has he been tested for dyslexia/dyscalculia? My son is very bright but was put in the lowest set because his dyslexia wasn't recognised by the school.

    He does not have dyslexia he has been tested three times but has alot of the traits of dyslexia.
    Mojisola wrote: »
    Can your son have a serious conversation with you which seems beyond his years? If he tells you a story (rather than trying to write it down), is it imaginative and interesting?

    His imagination is fantastic. No you can't have a grown up conversation with him, he is well below his peers on a social level.
  • iammumtoone
    iammumtoone Posts: 6,377 Forumite
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    theoretica wrote: »
    What will the practical results of that diagnosis be, and do you think they will help your son?

    I know someone who had one diagnosis for about 30 years, which was then changed. Instead of an odd case of something commonish, she is now said to have a standard case of something much rarer. What I think may be relevant to your situation, is that actually the treatment and care she has had for the last decades was nearly unchanged from that of the newer diagnosis, and also that diagnoses can be updated.

    Thank you that is most helpful I did not know you could get a diagnosis changed/disregarded.

    I also did wonder what does it matter what the diagnosis is as with any diagnosis he will be in the 'system' which hopefully leads to help and understanding that he might need a bit more time/consideration than other children in the class. Not that all children don't deserve this and to be treated as individuals anyway.
  • Savvy_Sue
    Savvy_Sue Posts: 47,477 Forumite
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    I think we suggested before that you should consider changing schools. I can't remember if that was impossible, but it still seems to me that the school aren't going to give him the help he seems to need.
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  • iammumtoone
    iammumtoone Posts: 6,377 Forumite
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    Savvy_Sue wrote: »
    I think we suggested before that you should consider changing schools. I can't remember if that was impossible, but it still seems to me that the school aren't going to give him the help he seems to need.

    I never wanted this before as I have to consider the whole picture, he was ok at school and liked it he hates change so that wouldn't have helped him.

    However now he wants to move school, as he has got older he has less and less friends due to his different behaviour. He has one friend and the rest of the kids don't like him :( I have raised this lot of times, school don't think this is an issue as apparently lots of children only have one friend which is fine if they are happy with it but he wants to be friends with everyone :(.

    I am happy to move him now as he wants to but not sure if it will be beneficial as he only has one year left at primary?
  • Zeni
    Zeni Posts: 424 Forumite
    Can I just add I have taught quite a few children who have been diagnosed with ADHD and they have not all been the almost stereotypical view of what you may see on TV. One for example was actually behaviour wise just so over excitable and just could not concentrate or control himself from chatting but yet his behaviour on the whole was ok.
    The ability thing could be that he isnt trying or pushing himself. Again, if it is adhd a trait of this I've found is tests in particular are very hard due to the focus for long periods of time that is required so they don't always show their full capabilities and easily become bored with activities etc.
    It may be worth just seeing what with this diagnosis the school may now put in place - its worth a try some of the strategies that help children with adhd you never know they may help and like you say will help staff realise he may show many behaviours that he cannot help and they can be more accommodating of these.

    Re: moving schools, that it a tough one if he is about to start year 6 next year! That's going to be a huge year for him and its whether its the devil you know vs the one you dont.The advantage of your current school is it seems like things are happening and they know him/he knows them. If you did consider moving it may be better to try and do it before the end of this school year so at least he can get to know the new school, they can get to know him and so the transition and start to year 6 will be much smoother.
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  • Savvy_Sue
    Savvy_Sue Posts: 47,477 Forumite
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    I never wanted this before as I have to consider the whole picture, he was ok at school and liked it he hates change so that wouldn't have helped him.

    However now he wants to move school, as he has got older he has less and less friends due to his different behaviour. He has one friend and the rest of the kids don't like him :( I have raised this lot of times, school don't think this is an issue as apparently lots of children only have one friend which is fine if they are happy with it but he wants to be friends with everyone :(.

    I am happy to move him now as he wants to but not sure if it will be beneficial as he only has one year left at primary?
    that's true, but is another year plus of misery going to do him any good? It's a gamble, but ...
    Zeni wrote: »
    It may be worth just seeing what with this diagnosis the school may now put in place - its worth a try some of the strategies that help children with adhd you never know they may help and like you say will help staff realise he may show many behaviours that he cannot help and they can be more accommodating of these.
    That's very true, but if you don't see some support and help being put in place fast in response to the diagnosis then I'd definitely consider it.
    Zeni wrote: »
    Re: moving schools, that it a tough one if he is about to start year 6 next year! That's going to be a huge year for him and its whether its the devil you know vs the one you dont.The advantage of your current school is it seems like things are happening and they know him/he knows them. If you did consider moving it may be better to try and do it before the end of this school year so at least he can get to know the new school, they can get to know him and so the transition and start to year 6 will be much smoother.
    Agree. And I think in your place I'd start looking around now to see what other schools there are, get in touch and see what their response is, go and visit (initially without your son) and see how things seem. Especially see if you can speak to their SENCo!
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