Hello I’m new to the group! Any tips on how to help/understand a disabled child? — Scope | Disability forum
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Hello I’m new to the group! Any tips on how to help/understand a disabled child?

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lucycraven95
lucycraven95 Community member Posts: 2 Listener
edited November 2021 in Rare, invisible, and undiagnosed conditions
Hello, I’m new to this group as we’ve been trying to find support for what my daughter has. She’s been diagnosed with CFC syndrome a rare genetic disorder. 

With additional needs, thought we’d come in here and see if anyone has tips or advice, books, that anyone can suggest on how to help/understand a child with a disability, what works and what doesn’t.
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  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,562 Disability Gamechanger
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    Hi @lucycraven95 welcome to the forum, I think you've come to the right place! Hopefully we can help answer any questions you have, and I'm sure our members can share their own experiences as well. 

    To help with that I've moved this post into the 'Rare, Invisible and Undiagnosed Conditions' category. Please feel free to take a look at 'Children, Parents and Families' if you think it might be useful :)

    I've just checked and it looks like you've started a discussion already, way ahead of me! If you do need anything else though, please do let us know.

    Alex
    Online Community Coordinator
    Scope

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  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,978 Disability Gamechanger
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    Hello @lucycraven95

    Welcome to Scope's forum. It is great to see you have joined us. How are you today? Are there specific tips and advice you are looking for? This could help us to narrow book recommendations, tips, and advice to ensure they are the most suitable for you. I think at this stage it is also important to note that every child with a disability is different and what works and what doesn't work will also vary in accordance with this and you know your daughter best! However, we will be more than happy to support you along the way  :)
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
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  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
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    Hi and welcome to the community glad you have joined 

    I'm sorry I can't offer any advice but wish you and your daughter the best 
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  • Tori_Scope
    Tori_Scope Scope Posts: 12,492 Disability Gamechanger
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    Hi @lucycraven95 :) Welcome to the community! I can imagine that it could be difficult at times to know what the right thing to do for your child is, especially if they have a rarer condition. 

    Firstly, you might be interested in accessing one of our family services, such as Navigate or Parents Connect. This could help you to connect with other parents in a similar position, and access some helpful advice and support. 

    You may also like to visit Contact's website, as they're a great charity who support families with disabled children.

    I hope that another parent of a disabled child will see your post soon, and be able to point you towards some books or resources based on their personal experiences. 
    National Campaigns Officer, she/her

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