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Hi! New mum of disabled baby... Agenesis of the Corpus Callosum

mrsg2019mrsg2019 Member Posts: 1 Listener
edited July 2019 in Parents and carers
Hi everyone 👋🏻

My name is Deborah and my son is 16 weeks old. Being a mum is brilliant, but we are struggling. He has complete Agenesis of the Corpus Callosum (the CC is a piece of the brain which allows the right and left-hand sides to communicate. He is missing his entirely), and also diagnosed yesterday with Optic Nerve Hypoplasia. This means he is likely to be mostly blind.

This new diagnosis has hit us like a tonne of bricks. Aside from the worries we now have about how he will manage in the world without his eyesight (which of course I know billions of people do - it's just all new to us), we are really worried he won't be able to go to nursery, and I won't be able to work, which we just can't afford.

Anyway that's the story for now. Look forward to discussing everything with you all in due course and getting your advice on working as parents of disabled children! x

Replies

  • steve51steve51 Community champion Posts: 7,175 Disability Gamechanger
    Hi @mrsg2019

    Good Evening & Welcome it’s great to meet you today.

    I am very very sorry to hear about your current struggles.

    We have got some info for parents of disabled children.

    Here’s some link below for you:

    https://www.scope.org.uk/family-services/parents-connect/

    Please please let me know if there’s anything that I can help you with????

    @steve51

  • emmarenshawemmarenshaw Community champion Posts: 704 Pioneering
    Hello @mrsg2019 welcome to the community. I’m Emma, one of the Community Champions who are here to help should you need anything. 
  • Imogen_SteeleImogen_Steele Member Posts: 42 Courageous
    Hello and welcome to the community! My name is Imogen. I’m 23 and have cerebral palsy. My mum works for the portage service. Portage provides holistic support for children with additional needs  (0-5 years) and their parents. If there is a portage service in your area you can refer yourself to it straight away. I had portage from 16 months and it was a great support to my parents. This is how my mum got involved with the service. Your son will definitely be able to go to nursery. There is extra funding available to support children in nurseries and at child minders if needed.  There are also some excellent specialist nurseries around. You should be able to find out more from your local council. Cerebra also have lots of good information online. Hope this helps, please let me know if you need anymore information  
  • Chloe_ScopeChloe_Scope Scope Posts: 10,662 Disability Gamechanger
    Hi @mrsg2019 and a warm welcome to the community! Thank you for taking the time to share this with us. It's understandable that you feel like this with the diagnosis. Have you had much support regarding this?

    I hope the community can offer support and guidance and please let us know if we can do anything in particular to help :)
    Community Partner
    Scope

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  • Connie00Connie00 Member Posts: 255 Pioneering

    Hello @mrsg2019 :) 


    Hello My Name is Connie00

    I am one off the community Champion’s here at Scope.  it’s really nice to meet you.

    A very warm welcome to the Community.

    Thank you for reaching out to us.  I trust you are having a good day today.

    I am very sorry to hear about your Son’s diagnosis; it must be very distressing for you both 

    ACC is a rare disorder to which I know nothing about its very hard to find much relating to this condition, but I can assure you, that you will be able to get all sorts of help, its very early day and you  both are still in total shock at the moment.

    Take time to read up everything you can, Including the link below I have sent to you

    www.corpal.rog.uk

    you will be ok, as your Son gets older it will become more apparent to what his needs will be. @Imogen_Steel has explained there are a lot of avenues you can go down,

    @steve51  also mentions the link below  https://www.scope.org.uk/family-services/parents-connect?

    another one which might be of use to you is

    https://www.scope.org.uk/advice-and-support/families-with-disabled-children/

    I understand your concerns about needed to work, both the links provided here should be able to lead you in the right direction, as to what you may be entitled to, and also how employers have to be amenable,

    We are always here to lend support when needed.

    If we can be of any further  assistance to you please don’t hesitate to contact us

     

    Have a good day

     

     

    @connie00   :) 


  • AilsAils Community champion Posts: 2,268 Disability Gamechanger
    Hi @mrsg2019 and welcome to the Community.  I am sorry to hear about your baby's diagnosis and know this must be very difficult to take in as a family.  The Community is hear to listen and to support you should you need it.  Please let us know if we can be of any further help to you.  All the best.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
  • Adrian_ScopeAdrian_Scope Testing Team, Community Team Posts: 7,949 Scope community team
    Good morning @mrsg2019 and a very warm welcome to the community. :)

    Congratulations on your son! I bet the last 4 months have flown by? My youngest is 11 months and I can't believe how quickly the time has gone. 

    I'm really sorry to read that you're struggling. I don't know if it would be of interest but we have recently launched a new (free!) service called Navigate which aims to offer support after a new diagnosis. I'm going to tag in @Beverley_Scope, @Matt_scope and @Kate_Scope who are part of the Navigate team and might be able to tell you more about it.

    I look forward to seeing you around the community and getting to know you! :smile:
    Senior Community Partner
    Scope

    If you have a few minutes to spare, we'd appreciate your feedback on our online community.
  • Matt_ScopeMatt_Scope Navigate Posts: 56 Pioneering
    Hi @mrsg2019 . Thanks for tagging me in @adrion_scope .  Here at Navigate we can offer you 6 weeks of structured support with a weekly phone call from which we can address yours concerns and give practical and emotional support and build you an action plan.  This service is available for any parent of a child whose condition or disability has been diagnosed within the last year, or if your child is currently going through a diagnosis pathway.  Its easy to apply via the online form in the Navigate section of the Scope, or by calling our direct free phone 0808 8010510 and speaking to our Coordinator Tom.  From here you will be assigned to an advisor who will help you and who will stay with you for each of the 6 sessions that the service cal provide.  If you have any other questions please ask and if you feel the service is right for you, please get in Touch..  Matt
  • April2018momApril2018mom Member - under moderation Posts: 2,882 Member - under moderation
    Hello

    Congratulations!
    What questions do you have for us? How can we help you? Do you have a social worker or not? 
  • Sam_ScopeSam_Scope Member Posts: 7,732 Disability Gamechanger
    Hi @mrsg2019
    One of our members @motherscuffer has a fabulous child with ACC, I wonder if she can offer any thoughts? I know she supports the Corpal charity and has written a children's book about ACC.
    Scope
    Senior online community officer
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