Replies

• thespiceman Member Posts: 6,408 Disability Gamechanger

  February 2019

  Hello @cerivernon1 Pleased to meet you welcome.
  
  Sorry what has happened. We have a SCOPE member of staff who is our Cerebral Palsy advisor.
  
  @Richard_Scope he will be in touch with you.  To advise further.
  
  Hope that helps.
  
  I am one of the team of community champions. Who help and advise new members.
  
  I know we have on our website additional support from members who you may be interested in.  Under Cerebral Palsy.
  
  Please take care.
  
  @thespiceman
  

  Community Champion
  SCOPE Volunteer Award Engaging Communities 2019
  Mental Health advice, guidance and information to all members
  Nutrition, Diet, Wellbeing, Addiction.
  Recipes
  

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• Richard_Scope Posts: 2,889

  Scope community team

  February 2019

  Hi @cerivernon1
  

  Good to meet you and thank you for your post. Receiving a diagnosis can be a very confusing time. On the one hand, it is helpful to know that your child has a recognised impairment and can now receive help and treatment and on the other, it raises more questions for you and your family.

  We have lots of information about Cerebral Palsy and advice about Help after receiving a Diagnosis.

  
  

  I live with quadriplegic (4 limbs) Cerebral Palsy and I can chat to you about CP. You are not alone
  

  
  

  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. 
  

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• SaraC_Scope Scope Navigate service Posts: 32 Courageous

  February 2019 edited February 2019

  Hi @cerivernon1  I am a Parent Adviser for the Scope Navigate service.  Navigate provide a six week programme of online and telephone support to parents who have a child going through diagnosis or have a child who has recently been diagnosed with a disability.  The aim is to provide parents with emotional and practical support that will help them build resilience as they start on their journey as a parent of a child with a disability or impairment.
  Our service launches on Monday 25th February.  I will come back to your post on Monday and provide the Navigate phone number if you feel this would be beneficial to you.
  
  Kind Regards

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• SaraC_Scope Scope Navigate service Posts: 32 Courageous

  February 2019

  Hi @cerivernon for more information and to apply online, please visit http://www.scope.org.uk/navigate

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• SaraC_Scope Scope Navigate service Posts: 32 Courageous

  March 2019

  Hi @cerivernon
  
  I was just wondering how you have been feeling since your first post about your little boy's diagnosis.
  
  Remember there is plenty of support on this community and we at Navigate are here to provide any emotional or practical support if you felt it would be suitable.
  
  Take care
  
  Sara

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• JennyW Member Posts: 6 Listener

  March 2019

  My little girl is 14 months old and we received a diagnosis of pending CP a few months ago. It has been described as mild and so far only seems to affect her gross motor skills. It appears to affect all four limbs but our consultant has not yet confirmed anything nor has he confirmed the type of CP she has. Her physical therapist suspects she has Dyskinetic CP. I think she experiences a fluctuation in muscle tone. Some days she sits well, crawls and plays really well and other days she seems to regress. I'm trying to get my head around what this means for her as she is a bright little girl. Her CP does not affect her thinking and learning. I'm concerned that she will become frustrated because she is not able to walk. She attends nursery and socialises really well with the other children and her carers. She is very inquisitive, can feed herself, holds a spoon, drinks from a cup, can hold items between her forefinger and thumb, loves books, loves standing (whilst I hold her hands) and will happily play on her tummy. I just don't know what the future holds and have days like today, when I'm tired and she seems to have regressed when I fear for the future and wonder why this had to happen to my child. Otherwise I'm very proud of her. She makes me smile and I'm madly in love. I believe she will walk and go to a main stream school. I'm just scared of the unknown and need reassurance.
  

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• SaraC_Scope Scope Navigate service Posts: 32 Courageous

  March 2019

  Hi @JennyW
  
  Your daughter sounds like a lovely little girl and seems to be doing well at the moment.  I can understand your concerns regarding her CP diagnosis, it's a worrying time but this community is here to offer you advise and support.
  
  As I mentioned in one of the previous posts, I am a Parent Adviser for the Scope Navigate service.  Navigate provide a six week programme of online and telephone support to parents who have a child going through diagnosis or have a child who has recently been diagnosed with a disability.  The aim is to provide parents with emotional and practical support that will help them build resilience as they start on their journey as a parent of a child with a disability or impairment.
  
  If you feel this service would be beneficial to you please visit http://www.scope.org.uk/navigate or call:
  0808 801 0510
  
  Kind Regards
  
  Sara
  
  
  
  

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