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SEN child

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kimamb92
kimamb92 Community member Posts: 2 Listener
edited October 2020 in Education
Hello. My daughter nine has been diagnosed with 1q21.1 duplication which is genetic. Shes also globally delayed unable to read, write or do simple maths, so SEN shes working at an early year 1 level. Shes a real socialble child though. She will talk to anyone. Her peers at school lo e her and so do her teachers. Had a meeting at school today and fingers crossed will be eventually getting a EHCP put in place before she starts upper school. Anyways what im trying to get at what other help can i get for her. Is there an underlying condtion that she may have but we are missing. Im really struggling in what direction i need to go. TIA x
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  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,741 Disability Gamechanger
    edited October 2020
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    Hi @kimamb92 and welcome to our community.  Thank you for telling us about your daughter.

    I have never heard of 1q21.1 duplication but have quickly researched and can see it's a rare condition.  Has the NHS team who provided the diagnosis offered any support since?  

    Although I'm not medically trained, I wonder if an assessment by an educational psychologist would be beneficial.  Has this been discussed as part of you obtaining an EHCP?  

    I also found this booklet about 1q21.1 duplication and other ways children can be affected by it.  Please bear in mind though that internet resources, although useful, can make us worry about things we hadn't thought about.  So try not to be too alarmed by anything you read  <3  
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  • kimamb92
    kimamb92 Community member Posts: 2 Listener
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    She should hopefully be seeing an educational psychologist soon. Just waiting for them to get back to school. She did have an assement when she was 7 years old and was told she has a global age of a 5 year old but nothing has improved school wise. She has only recently just been diagnosed with 1q21.1 so still a learning curve for us. We have no help or advise on what to do from the nhs. Also got told that she has tics and then discharged from all pediatrions. I am really stumped at what to do. Shes in year 5 at school and im really wanting to get a plan in ace before she starts upper school 
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  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,652 Disability Gamechanger
    edited October 2020
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    Hello @kimamb92 and welcome to the community :) 

    I have moved your discussion to our education and learning category so it will hopefully get more responses.
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