Seeking advice for my 4 year old granddaughter urgently? — Scope | Disability forum
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Seeking advice for my 4 year old granddaughter urgently?

Hi there! I am seeking information for my daughter. She is a single parent of 4 year old twins. One of whom is severely disabled- cerebral palsy, visually impaired, none verbal to name a few things. She has no support or help whatsoever. She moved to a different part of the country in August 2019 and by the time the education plan was in place etc the lockdown happened so she start nursery in March as planned. Although the school is due to open she has heard nothing and my granddaughter is meant to have an appointed person to care for her in the school. 
She has not had so much as a letter of advice about COVID considering my granddaughter is classed as a vulnerable child. She even has to go and pick up the prescription once a month take it to the chemist then return 2-3 days later to collect 30 bottles of a nutritional drink the dietitian prescribed every month. She gets hardly any sleep. She has to blend every meal and push it through a sieve to remove any lumps then it can take 1-2 hours to feed her 1 meal. Plus she has to care for and entertain her twin. I help her as much as I can but it’s a lot even for the two off us. Can you offer any advice or information please? 
Thank you in advance I only found the scope website yesterday and am very grateful to have done so. 

Comments

  • janer1967
    janer1967 Member Posts: 15,114 Disability Gamechanger
    Hi and welcome @gabriel336 Glad you have joined us here.

    You may want to look at our section on parents of disabled children, and even our CP section. I will also tag in our community CP advisor @Richard_Scope

    Has your daughter spoke to social services about getting some help and about her school and nursery

    I hope other members will be able to offer more help it must be so hard for her and you
  • Richard_Scope
    Richard_Scope Posts: 3,106

    Scope community team

    edited August 2020
    Hi @gabriel336
    Good to have you here. 
    Your daughter needs to make contact with here local social services. Her GP should be able to help with this. What area of the UK do they live in?
    We have some advice pages for Families with Disabled Children

    We will try to support you as much as possible.
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • gabriel336
    gabriel336 Member Posts: 24 Connected
    Hello and thank you for responding! 
    Social services no she hasn’t spoke to them. Does she have to contact them?
    As for the nursery she did it herself  so both twins could go together for a year as they have just turned 4 and begin reception at 5. They moved from Merseyside to Cumbria last August.
    The GP isn’t to good she only been once for an emergency appointment she had tonsillitis was left in waiting room for an hour crying. She really needs to change GPs but with the lockdown and everything...
    I’m sorry to sound negative -that’s just the truth of the matter. 
    Thanks again I’m near crying with relief just to speak to you! 
  • Tori_Scope
    Tori_Scope Posts: 8,195

    Scope community team

    Hi @gabriel336!

    I'd also like to welcome you to the community, I'm glad you found us. 

    She can refer herself to social services by searching for her local council here and finding out what their contact details are. 

    I'm sorry that her GP isn't very good. Was it the surgery in general that let her down, or was it a specific doctor? She could ask to speak to a different GP at the practice next time.

    There's no need to apologise for sounding negative. This sounds like a difficult situation for you all, and everyone on the community is here to try and support you in any way we can.

    Try and take a deep breath :) 
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  • Ross_Scope
    Ross_Scope Posts: 6,669

    Scope community team

    Hi @gabriel336 and welcome to the community :) 

    I see you've been given some advice above so there isn't much for me to add here. All I'll say is that if you want to get support for your grandaughter's visual impairment, I would recommend contacting the RNIB's helpline on 0303 123 9999. They will be able to advise on anything and everything sight loss related, from mobility aids to home adaptations and everything in between. 

    If there's any other advice you need, don't hesitate to ask. 
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  • gabriel336
    gabriel336 Member Posts: 24 Connected
    Thank you everyone it mean a lot xx
  • chiarieds
    chiarieds Community Co-Production Group Posts: 12,265 Disability Gamechanger
    Hi @gabriel336 - welcome to the community, which I'm pleased you've joined. As another Mum & Grandma, I know how difficult it is when they need help. I do hope the info given above helps your family. People here understand, & are both helpful & supportive, which I'm sure you've found.
    Please let us know how you get on, & ask any questions you need. :)
  • Richard_Scope
    Richard_Scope Posts: 3,106

    Scope community team

    Good morning @gabriel336
    How are you today? I did some looking around last night and found the Children with Disabilities Team in Cumbria and Contact - for Families with Disabled Children
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,557 Disability Gamechanger
    Hi @gabriel336, welcome to the community. :)

    Just wanted to check in to see how things are going. 
    Scope

  • gabriel336
    gabriel336 Member Posts: 24 Connected
    Hi everyone just a quick update. Aniyah is starting nursery with her mum for a few hours she has her own carer. So hopefully she will get to know her over the next few weeks. Then once she is settled in Sophia will start too!!
    My daughter has still to contact the social services and I will let you know the outcome.

    I do have a question for anyone who can help me?
    Yesterday whilst at the park we needed the disabled toilet-It was locked. We asked for the key from the cafe they told us to ask at the kiosk for mini golf. They told us that the Park Ranger had it. I asked them to contact him. The lad went away for about 5 minutes and on his return said he couldn’t get hold of him. We tried to get the wheelchair into the ladies toilet but it wouldn’t fit. We went to the playground and I mentioned it to one of the parents she was disgusted we couldn’t use it. She suggested that we would have to go to the leisure centre. After at least 40 minutes since we tried to get the key the woman spotted the park ranger and began to shout him by name. We asked for the key and asked him why it was kept locked if he was not going to be there to open it and nobody could contact him? 
    He said it was the only key and he couldn’t give it out as other people took it home. He then said if you were disabled and you wanted to use the toilet we had to apply to the council for our own key. He then went with my daughter and opened it.
    Surely in a public park which allows others to use the toilets freely as they are open this is discriminating against people who are disabled? I am so upset that my granddaughter is not allowed to be changed on a rare day out. I would like to ask you all who do I take this up with?
    Thank you all xx
  • chiarieds
    chiarieds Community Co-Production Group Posts: 12,265 Disability Gamechanger
    Hi @gabriel336 - About disabled toilets, I've heard about the Radar key scheme. Please see: https://www.disabilityrightsuk.org/shop/official-and-only-genuine-radar-key
    You could try your council to see if you can get a key from them, or at least confirm if you bought a Radar key that it would give access to local disabled toilets.
    I'm sorry for the recent experience you had & that it took so long to get a key, but hope the above info may help.
    Thank you for your update, & do please keep in touch. :)


  • Richard_Scope
    Richard_Scope Posts: 3,106

    Scope community team

    You don't have to apply for a key. Radar keys can be purchased from your local authority or you can buy one here
    Radar Keys
    Disabled toilets are often locked because they get misused or vandalised.
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
  • newborn
    newborn Member Posts: 741 Pioneering
    Loos.....Its better not to have them unlocked, to keep out idiots who would wreck them.  Keep your own key.  They don't  even cost much. 

    Seives for food......Can you find the current version of a Mouli-baby, which could mush a roast dinner in necessary? Maybe Lakeland?.   There are other, similar,  mechanical  things now, or blenders.

    Thank goodness the children have gained the places in nursery.  Hope everything goes well for you all
  • gabriel336
    gabriel336 Member Posts: 24 Connected
    Thanks all Radar key has been ordered- I had no idea about them. Xx

  • Richard_Scope
    Richard_Scope Posts: 3,106

    Scope community team

    If your anything like me @gabriel336, I'd order two. I forever losing radar keys!
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
  • forgoodnesssake
    forgoodnesssake Member Posts: 406 Pioneering
    If they are in Cumbria then there is a parent carer forum (or at least there was! it's currently being "revitalised")  There are also some more local forums depending on where they live.  There is also Cumbria Cerebral Palsy society which has just re-opened.  They have 2 support workers, one north Cumbria and one south.  In the past we have found them incredibly helpful. (we are in the south of the county)


  • gabriel336
    gabriel336 Member Posts: 24 Connected
    Radar key arrived! I should have ordered 2! Oh well. 
    Thank you for so much for the information it’s very helpful xx
  • Cher_Inactive
    Cher_Inactive Posts: 4,412

    Scope community team

    @gabriel336 I'm glad you got one!  I have a radar key and it's saved me many a time.  

    How did Aniyah find the nursery? I hope it went well  :)
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  • gabriel336
    gabriel336 Member Posts: 24 Connected
    Yes she has a nursery she has just started for a few hours of a morning with her mum so that the carer can get to know her. Thank you for asking xx

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