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Struggling to get a diagnosis for my almost 5 year old

CarlyDeeCarlyDee Member Posts: 8 Listener
im struggling to get a diagnosis for my almost 5 year old and and my wits end. Was told id feel welcome here :) hi


  • Andy58Andy58 Member Posts: 39 Courageous
    Hello and welcome
  • woodbinewoodbine Community Co-Production Group Posts: 4,454 Disability Gamechanger
    Morning @CarlyDee hope you are ok today, yes you are most welcome here somebody will be along today with some advice for you.
    "Putting a child into care, isn't caring for a child" (T.Rhattigan)
  • Ross_ScopeRoss_Scope Posts: 4,114

    Scope community team

    Hello @CarlyDee

    Welcome to the community, how are you today? 

    Do you want to tell us a little bit more about yourself and what is it you're struggling to get diagnosed with your son? I've moved your discussion to a section of the forum where it will receive more specific responses to the type of issue you're having. 

    Again, a very warm welcome to the community :) 
    Online Community Coordinator

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  • chiariedschiarieds Community Co-Production Group Posts: 9,128 Disability Gamechanger
    Hi @CarlyDee - Welcome to this friendly & supportive community, & thank you for joining. How can people here help? :)
  • emmarenshawemmarenshaw Member Posts: 712 Pioneering
    Welcome to the community @CarlyDee  I’m Emma, how are you today? 
    The community is a lovely bunch, so if you ever need anything or have any questions please let us know.
  • CarlyDeeCarlyDee Member Posts: 8 Listener
    So i have a almost 5 year old son, and although school, myself and family see issues with my son iv gotten little or no help. They have suggesting adhd but said they wont look into it furthet until hes 5. Its been so hard. Hes been labelled this naughty kid  and its horrible.

    He barely sleeps and is constantly into something and leaves a trail of mayhem wherever he goes. He is reluctant to speak, and when he does he is hard to understand (not for me) but everyone else. In school he didnt talk for 9 months they said its selective mutism? He has said the odd yes or no to teachers now in respect of register etc but they cant be sure as he whispers it too quietly. But its a great leap from last year. (He doesnt stop talking at home) 

    He hss brrn toilet trained since 2 but at school he wets himself almost daily and because he doesnt speak the teachers dont notice and hes come home eithrr soaking wet or smellimg of wee i hate sending him. They havent given snack at snack time because he wont go collect his snack from bag etc... i feel so let down by the school snd everyone else.

    He was reduced to half day at school and eas banned for number of weeks for aggrrssion toward peoole. Im at my wits end 😭😭😭

  • emmarenshawemmarenshaw Member Posts: 712 Pioneering
    edited August 2020
    Hi @CarlyDee I’m so sorry you’re having such a tough time. I’m going to tag @Richard_Scope to see if he can give you any advice or information.

    The Scope helpline is here if you need to talk to anybody from the team
    Phone: 08088003333  
  • CarlyDeeCarlyDee Member Posts: 8 Listener
    Thank u so much guys 💜
  • Richard_ScopeRichard_Scope Posts: 2,834

    Scope community team

    Hi @CarlyDee
    This must be a very upsetting time for you and your family. Have you had much input from your GP?
    We have some very useful information about getting a diagnosis for your child 
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • CarlyDeeCarlyDee Member Posts: 8 Listener
    I have been to thr gp several times with him asking for help over this and expressing concerns and they just keep telling me they will refer him but thiss has been over a year  iv been fighting for a diagnosis and nothing... 

    The doctor himself commented on his behaviour. We had gone for an unrelated appointment for his asthma and i had to hold my son and wrap my arms around him on a chair as he was flicking chairs over and howling. I wrapped him up on my lap and he attacking me and biting me so i go in all tearful and the doctor has aaid abkut getting me help and still nothing.

    Im constantly worried over my son and he has a brothrr a year older and the difference is vast. The (boys will be boys) thing annoys me.

    Im lucky if he sleeps 4 hours a night. He has no naps etc, he can be so kind and gentle and the next min hes this huge ball of anger and iv had black eye thick lip bites scrams all over me.

    His brother has been sleeping and woken up having been drawn on through the night. Pulled from his bed by his hair etc. I feel like im failing.

    Failing them both

  • Cher_ScopeCher_Scope Posts: 4,011

    Scope community team

    Hi @CarlyDee and welcome to the community! I'm so glad you found us and shared your story so we might be able to help you.

    I'm sorry your son has been labelled naughty.  That is really unfair and is often a way people describe those they don't understand.  Just because he acts differently and is an individual, he is definitely not 'naughty'.  

    Has your GP referred him to the local CAHMS (Children and Adolescent Mental Health) team? and also are you receiving support from your school's SEN team?  There is support you might be entitled to, that this Children with special educational needs and disabilities government page outlines.  

    It sounds like a lot for you to deal with too, so make sure to visit your GP and discuss any stress you are feeling if it gets too much.  
    Online Community Co-ordinator

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  • emmarenshawemmarenshaw Member Posts: 712 Pioneering
    @CarlyDee No worries. Is it possible to reiterate to the school that your son must be given more support than he’s currently getting? It seems terribly unfair that he’s being left in these situations.
  • janer1967janer1967 Member Posts: 11,160 Disability Gamechanger
    Hi @CarlyDee Welcome to the community you have come to the right place and I hope some of the advice given has been a help to you

    My stepson had very similar issues to your son and from what I know it took a long time to get the right diagnosis and support he did however have a very good GP

    Have you been in touch with children social services I know a lot of people try and avoid them but they should be ablet o point you in the right direction and hopefully work with you and his school as well

    It must be very hard to deal with and you need to get the help you require
  • atlas47atlas47 Member Posts: 163 Pioneering
    Hi @CarlyDee

    Have you discussed  matters, with your son’s Health Visitor, they should be able to arrange various assessments for him.

    I would also suggest you organise a meeting with the Head Teacher and the SENCO.

    Have you tried to seek an Advocate for your son? 

    Please keep us informed.

    Stay kind and be safe.
  • CarlyDeeCarlyDee Member Posts: 8 Listener
    I am unsure how to respond to individual responses on here but i am reading them all... means alot.

    I hate the naughty label :( and tbh my mam is also guilty at saying this in front of my son. She knows there is something underlying also but contradicts herself and tells him hes naughty and says it within earshot of him. Hes taken a real dislike to her due to this fact. 

    I have been reffered to SPACE its where they refer us before Cahms in our bourough. 

    I have exhausted myself trying to get help. My health visitor who backed me completley and reffered him to SPACE panel and educational phsycologist isnt about anymore as we have passed the age of criteria.

    And i feel no one else seems to understand my pleas.
    We have pushed to get him into speech and language therapy he was attending with the school before lockdown. But made no progress as he refused to speak to the lady. He spoke during his initial assessment at the surgery with a different lady and i was so happy he spoke to a stranger i cried. He was very reluctant but it was a game and he named animals and i was so proud.
    She concluded that he has back to front speech and that hes introverted amd quiet and may be why hes having trouble at school.

    School issues.. im debating leaving the school because the wont provide one to one for him. I asked for kais progress to be monitored in a home to school book. So id write kai slept well or didnt or had outburst etc and they write down his behaviour at school etc. And do a reward jar for each i provided book jar and gems they declined the jar and aaid they have their own sticker system (dojos) but the jar seen dome improvement at home yet they still declined. And the book one day they would write in it thr next they wouldnt. 

    I called a meeting then with a family support worker and the headmaster the class teacher and the senco it didnt go well.

    And kai was on reduced timetable which meant he had to come home before lunch and wasnt allowed to activities. Clearly i fought the desicion kai would cry he couldnt have lunch with his friends. He was banned from movie club and his brother got to go etc.. it was awful to see him so upset over it and crying " me be good now mam" 😭

    I fought and he was allowed in the christmas concert but its a fight at every turn 😥

    Single mam and have raised both boys on my own for 4 and half years feel like im drowning in it all 

    Sorry my replies are so long i just feel relieved i get to vent it tbh
  • CarlyDeeCarlyDee Member Posts: 8 Listener
    @atlas47 hi therr our health visitor was fab and did help but hes nt under her anymore so im a bit lost.

    The school senco is horrible and shouted over me at meeting with head i was in tears on leaving.

    I dont know where else i can turn 😭 i feel so lost.
  • Cher_ScopeCher_Scope Posts: 4,011

    Scope community team

    edited August 2020
    @CarlyDee Believe me single mums deserve an OBE, I can tell from your posts how much you love and have fought for the best for your son.  I am sorry you are coming up against obstacles to him getting help.  

    Would you be able to chase up SPACE to explain you feel like the situation is getting worse and his referral needs speeding up? I would also ask if they can signpost you to any services that could support you until you are seen.  

    The school SENCO should as a basic be approachable and understanding.  Her shouting at you is unprofessional and I would advise you speaking to the headteacher about it privately to explain what happened and ask what more can be done to assist your son.

    I hope you have a good support system <3 please know that we are always here for you and will never be judgemental.  
    Online Community Co-ordinator

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  • atlas47atlas47 Member Posts: 163 Pioneering
    edited August 2020
    Hi @CarlyDee

    You should not issue yourself punishment, you are a struggling mum, who is doing her best.

    I would kindly request that you contact the health visitor again, they have discrimination to act on behalf of a child.

    You might wish to bring your circumstances, to your MP, that is why we elect them.

    May I tag @poppy123456 and @mikehughescq who are more than able to advice on behalf of Kai.

    It is spooky, that my response to your thread was based on my knowledge of my niece’s son Kia!

    Kia had the similarities to your Kia and he is bounding his way to secondary education in September.  His mum Vicky is a legend, in Special Needs Education and nothing that should be torn down, is not torn down.

    Stay kind and be safe.


    Would add that Vicky’s mum, is Jos, who beat the .... out of her local education authority, in respect of her other eldest daughter Marie (the special needs blind one).

    Who now works for Apple Inc!

    After her degree in American Studies!

    Who was told by her Infant School, that she needed to transfer to a blind school.

    Who now  likes horse riding and show jumping! But is blind.


  • CarlyDeeCarlyDee Member Posts: 8 Listener
    @Cher_Scope i dont have much in way of support. My boys dads family arent involved havent been since they were babies and my father passed away when i was pregnant for my youngest. And although my mam is great for practical help, shes not so great with emotional support she never has been.

    I have requested nt to be in with the SENCO again judt headmaster and teacher from now on. Shes the worst teacher at that school, not very warm person. I was clearly distressed and struggling and i took lists of concerns down and came out of there feeling downtrodden :(

    SPACE decided as kai hadnt been in school that long ( he started in the jan and wad reduced half day and taken off school just before the summer holidays last year they decided to let us work with the school educational pyschologist.

    His main class teacher was the one who eventually told me kai hadnt spoke at all in class for 9 months amd she was a social worker previously and remarked about other issues his aggression and how hes so busy amd will only sit to eat. The only time hes engaged lesson wise os arts and crafts other wise hes rollimg round not listening. She seemed to support my thinking. And when the educational pyschologist came in she followed kai for an hour and said he was doing well. And the teacher back tracked on everything she told me like the not talkimg (selective mutism) the not interacting with children etc.

    A week later he was sent home and told to havr few dayd home because he threw a book at a childs eye and punched anothrr child who took his snack.

    So we are now on the waiting list again to see Educational pychologist xx
  • CarlyDeeCarlyDee Member Posts: 8 Listener
    @atlas47 id be greatful for any advicr from anyone. I try so hard and just feel so bad all the time like i must be doing something wrong...

    Im hoping for some positive outcomes soon. Thank u so much for taking time to reoly means alot xxx
  • Cher_ScopeCher_Scope Posts: 4,011

    Scope community team


    Aww I really feel for you being in this position.  It can't be easy at all and I'm so sorry you lost your dad while you were pregnant.  That must have been a real blow.

    I wonder, do you have a local parents group that might be able to help you.  I know you don't have a definitive diagnosis but I'm sure you would be welcomed.  How are you today? 
    Online Community Co-ordinator

    Want to tell us about your experience on the online community?  Talk to our chatbot and let us know.
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger

    I'm sorry you're going through all of this. I know exactly how you're feeling as i had to fight for 14 years to get any diagnosis for my daughter. In the end she was 17 when she was finally diagnosed with ASD and a learning disability. All this was after i was told for years that "it was all in my head and i was just being an over protective mother" NOT!!

    In all honesty i've never heard of them waiting until a child is 5 to have an assessment. Yes, wait until the child is at least 2 but not 5. There's a very large waiting list for these assessments right across the country and Covid19 will have only made the problem a million times worse.

    I wouldn't advise contacting your local MP because i'm not sure what help they will be for this.

    If it was me then i'd start with your health visitor and your son's GP. His GP can refer him for any assessment that he needs, a referral doesn't have to come from his school.

    Other than this all i can say is don't give up!! I never ever gave up on my daughter, it took a lot of time, effort and a huge amount of fighting but i got there in the end.

    Good luck.
    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Hi @CarlyDee and a very warm welcome to the community! At this stage I don't have any further advice to give, but I just wanted to let you know that we are all behind you.  <3

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