Cerebral Palsy
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I get so irritated!

Rebecca90Rebecca90 Member Posts: 7 Listener
So, I'm currently lay in bed thinking about my daughter. She has CP and I've come to terms with it and I'm dealing with it all as best I can. 

But... 

Her dad is irritating me. He won't accept she has CP. Says she's fine, there's nothing wrong and that I'm just being stupid. 

Clearly there is something wrong because she's been diagnosed and you can see she has CP because she's right side hemiplegia. It's very noticeable especially in her leg. 

Am I being stupid by getting irritated? I just think he needs to be realistic and accept her for her and he doesn't. He's so childish and it really upsets me. Like if I talk about her CP he's like "not everyone needs to know". As if I should be embarrassed. But I am not. I love her so much and I'm more and more proud of her every single day. I just wish he would accept her diagnosis & not make a joke out of it. It really upsets me. I feel like he's embarrassed because of her disability.

Sorry for the rant...

Rebecca 

Replies

  • Connie00Connie00 Member Posts: 255 Pioneering


    Hello @Rebecca90   :) 

     

    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 so sad to read your post, I can understand your irritation, anger and frustration we are all so different, and it sound like her Father doesn’t believe that the diagnosis is correct, or maybe just won’t accept it,

    It very hard for some people to come to terms with things they don’t understand. I have come across this often.  I have no answers for you, but merely support.  Can I ask if I may you have not said how old your daughter is? or what led you to get further tests done. 

    CP when people often talk or hear about this condition, they always think of the worst-case scenario, which it never is, over the years we have learnt so much, more training and help with support can give people a lot more comfort care and control of their own life.

    Her Farther refers to not everyone needs to know, do you think this is because he has not embraced her condition himself, not that he is embarrassed. I have supplied this link for you in the hope that it might help you both, you really need both parents to embrace this to start the process of how best to help your daughter. Please keep in touch and let us know how things are going


    https://www.scope.org.uk/advice-and-support/cerebral-palsy/

     

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

    Have a good day

    @connie00   :) 


  • Chloe_ScopeChloe_Scope Scope Posts: 10,662 Disability Gamechanger
    Hi @Rebecca90 and a warm welcome to the community and thank you for reaching out. Adjusting to a diagnosis for yourself or your child can be a difficult process, so I'm sorry you aren't currently having that support from her dad. How long has she had the diagnosis for?

    Please do let us know if we can do anything to support you. I have CP myself (left hemi) and I am tagging @Richard_Scope who is our cerebral palsy specialist here on the community :)
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  • steve51steve51 Community champion Posts: 7,175 Disability Gamechanger
    Hi @Rebecca90

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

    Yes I have also had the same problems myself since I had my Stroke in 1998.

    I think the saying is “Love is Blind” 

    The harder I try the higher the “Barriers” become.

    I think it all comes down to the “Hidden Disabilities” again.

    Please please come back to me if you need any further help/support!!!!!!

    @steve51


  • Rebecca90Rebecca90 Member Posts: 7 Listener
    @Connie00

    Hi thank you for your reply. 

    My daughter is almost 18 months old and she's an identical twin. I noticed at around 6 months old she was holding her hand and arm strangely compared to her sister and she couldnt roll or sit up like her sister. I spoke to GP who said she was fine just behind because she was born 8 weeks early. However, upon seeing a physio she diagnosed her right hemiplegia as soon as I walked in the room.

    I just think her father is embarrassed because ehe asks me not to tell everyone she has CP but her CP is what makes her her & I love her no matter what. Its the way he goes about it. He doesn't help with her physio or thinks it's something to laugh at. He's 30 but just so childish and immature and right now she needs constant physio and he's not doing it. We aren't together unfortunately and I really don't want to stop contact because they adore him, but right now getting Amber stronger is the main priority.

    I probably need to just stop complaining but it's so hard when I really just want to get her stronger so she can be as independent as her sister. 
  • Richard_ScopeRichard_Scope Community Team Posts: 2,623 Scope community team
    Hi @Rebecca90
    People deal with a diagnosis in very different ways. Some people are very organised and proactive and look for solutions and support others ignore it and hope it will sort itself out. Right now the physiotherapy is absolutely the best course of action as the earlier the intervention the better the long term outcomes.
    Sometimes people will laugh when they find a situation too worrying or stressful. Your daughter's CP is not something to be embarrassed about or laugh at and hopefully, over time your daughter's father will see that.

    Do you have any other people that can support you with the physiotherapy?
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • emmarenshawemmarenshaw Community champion Posts: 704 Pioneering
    Hello @Rebecca90 welcome to the community. I’m Emma, one of the Community Champions who are here to help and advise. I’m sorry to hear you’re having such a difficult time, I have CP myself, I hope things get better for you but please know we’re all here when or if you need us. 
  • AilsAils Community champion Posts: 2,268 Disability Gamechanger
    Hi @Rebecca90 and welcome to the Community.  I'm sorry to hear you are going through so much with your daughter's CP diagnosis and the fact that your partner seems to not be accepting her condition.  This must be incredibly difficult for all of you as a family and I hope things improve for you in time.  Please be aware that the Community is here to listen and support you when you need it.  All the best.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
  • mikeymikemikeymike Member Posts: 36 Courageous
    hi Rebecca I can sympathise with you as when I was first diagnosed with CRPS my now ex wife refused to accept that anything was wrong with me I even carried on working against my specialists advice until the pain got so bad I ended up in hospital for six weeks and when I got out she still refused to accept it, so I fully understand what you are going through.
  • Adrian_ScopeAdrian_Scope Testing Team, Community Team Posts: 7,949 Scope community team
    Hi @Rebecca90 and a warm welcome to the community. I'm sorry that you and your daughter's father aren't seeing eye to eye on how to approach your daughter's diagnosis. It sounds like he may be in a bit of denial.

    I hope you've found some of the responses so far useful. I'm also going to tag in @Kate_Scope who'll be able to tell you about our Navigate service, which offers support for parents of children who have received a recent diagnosis in case it's of interest to you.
    Senior Community Partner
    Scope

    If you have a few minutes to spare, we'd appreciate your feedback on our online community.
  • Kate_ScopeKate_Scope Navigate Posts: 74 Pioneering
    hi @Rebecca90 My name is Kate and I am a parent adviser in the Navigate service here at scope. 


    I am also a mum to an 18 year old beautiful child (inside and out) who has CP and is a full time wheelchair user. 
    first of all before I talk about navigate I want to say- all parents cope so differently with the diagnosis, I know that myself and Eves dad did, he wasn't bothered by it what so ever, I was looking forward to the issues that it was going to cause.

     After a couple of years I started to live for the day- I know from my own point of view I used to tell people she had a diagnosis of CP but I always felt immense guilt and a part of me honestly used to feel that I had not created this perfect child like everyone else can manage. I was never ashamed of Eve I had more issues with how it had happened and what I could have done to stop it- ashamed I suppose but of myself. 

    So although I wasn't quiet about her diagnosis I clearly had issues that needed talking through with someone, I actually found out this a normal way of thinking and the way a lot of parents feel but don't say- what I am trying to say is maybe he is struggling with issues of his own in regard to this. 

    Right onto business:

    we are the navigate service and we offer support to parents who have had a child diagnosed in the last 12 months with a disability or impairment. 

    We offer 6 sessions usually over 6 weeks, we offer emotional and practical support and a chance for you to talk about your concerns in a safe space. 

    I will put the link up and you can see if you think this may be of some help to either you or your husband.

    https://www.scope.org.uk/family-services/navigate/ 

    good luck with everything 

    Kate 


  • Connie00Connie00 Member Posts: 255 Pioneering
    Hello @Rebecca90

     

    Thanks for your response how lovey twins, although this will be more noticeable, it makes the twins more individual’s both with different needs, I am sorry that the father doesn’t help as he should, and it’s a lot of work on you.

    There will be days when at the end of the day you will be drained on your chin straps, that’s just normal life having twins without all the Physio that you are doing, but I bet when you look at you lovely daughters there are so worth it  bless them.  have you much support from your family?

     

    I am glad you have found the support from @Kate_Scope, please follow them, let them help and guide you through this time, you will find that you can get emotional support, also they may be able  give you advice on any financial help you may be entitle to

     

    Good luck

    Connie  :)
     

     keep in touch sending hugs to your Twins

  • Rebecca90Rebecca90 Member Posts: 7 Listener
    Thank you all so much for your replies. Reading them makes me feel better for having these thoughts going around my head. I guess I thought I was in the wrong but I know we all deal with things differently. Just feel like shaking him so he will wake up. But I have to let him deal with it all on  his own terms and in his own time. 
  • Chloe_ScopeChloe_Scope Scope Posts: 10,662 Disability Gamechanger
    It's great to hear from you @Rebecca90, I'm glad everyone was able to help :)

    Like you said, we all deal with things differently and it can take time. Please do let us know if there is anything else we can do to help :)
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    Scope

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  • StayceStayce Member Posts: 374 Pioneering
    edited July 2019
    Hi @Rebecca90

    Welcome to the community! 😀

    I just wanted to reach out to you as I have right  Hemi myself, so if I can be of any help with any questions you might have just let me know 

    Like so many have said people react to diagnosis differently.
    It is possible your daughter’s father maybe thinks he’s being protective of your daughter by saying ‘not everybody needs to know’ Or he might just not be ready to have a conversation about it outside of the immediate environment so any time its mentioned he attempts to shut that conversation down with people don’t need to know

    Perhaps there’s something you could all do together in your daughter’s physio plan that would help him realise the importance of it -it really is. A lot of physio early on is game orientated, so it can be made fun with some creative thinking 😀

    Another great resource to look at and share is 
    http://www.hemihelp.org.uk/home
    Hemihelp have recently become part of the Contact family
    https://www.contact.org.uk/hemihelp
    They provide many great services including family support groups where you can connect with other families and a closed Facebook page where you can connect with other families with Hemiplegia (aside from here of course)
    https://m.facebook.com/groups/Hemiplegia/
    This might be something you and your daughter’s father might find useful to look at individually or together 

    All the best


  • Phil82Phil82 Member Posts: 50 Connected

    So my other half refuses to believe that I or my son have issues especially because I am probably fitter and more energetic than her even though it probably takes me twice as much energy but because me and lad can both walk/run arround etc she doesn't see i especially because I can swim a mile, run 10k, walk the dog etc although the last few months I have started strugging with the dog walking and given up running. she thinks we just have naturally tight muscles and that's it but then gets stressed when she compares him to other kids his age and thinks his motor skills are somewhat delayed/not as good as his peers.

    She thinks I am mad having all these dr/hospital appointments trying to figure out what is wrong with us but I'm determined to get to the bottom of it so I can get my son help at an early age if needed especially if he needs support at school and to sort his left ankle/foot out. Not sure how she will take it if he does get a diagnosis where as I will be fine as I can finally go into school and give them a reason for his shocking handwritting ha ha.

    The only concern is what I tell my boy who is 6. IF we do have something it is very mild so I don't really want him been treated any differently at school although extra time for handwritting would be useful. I don't know if at the moment just to tell him he has some type of tight muscles condition that means he is not as flexible as other kids (he knows he has tight muscles) and leave it vague without giving him all the details then maybe as he gets older start telling him more especially when I need to emphasie to him how important it is to excercise and look after himself (the lazy tennager years worry me that's when all my problems started and I am sure my muscles contracted).

    Also if I tell my lad he has a condition I am sure he would quite happily tell everyone and try and use it as an excuses to get out of things, especially handwritting!






  • Chloe_ScopeChloe_Scope Scope Posts: 10,662 Disability Gamechanger
    Hi @Rebecca90, how are you doing? :)
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  • April2018momApril2018mom Member - under moderation Posts: 2,882 Member - under moderation
    Accepting the condition(s) takes time. At first I needed time to accept my son’s disability. Diagnosis day was definitely hard on me emotionally. As the weeks passed I either acted like I was happy or sad whenever someone asked me how I felt about my son’s impairments.
    Now three years later I have learned about perspective. I have also learned how to speak up. I am matter of fact about his disability and have been from day one. I have gotten to the point where I now feel comfortable sharing a little bit of information.
    It took me a very long time. Have you looked at resources online? There are lots out there to use. I am a private person. I still haven’t applied for respite care because quite frankly it means I am giving up on my son. The older he gets the more I have to answer questions. 
  • Rebecca90Rebecca90 Member Posts: 7 Listener
    Thank you all for your replies. 

    I think her dad still thinks she doesn't have CP. He says she's fine and theres nothing wrong with her I'm just overreacting. But a doctor wouldn't diagnose if he or she wasn't certain. She's 18 months old and doesn't crawl or walk. She bunny hops on her bum and stands but only for short periods. She's doing amazing and I am so proud of her and that's why I talk about her and her CP. 

    But I am too very matter of fact. And Im like this to protect myself. I know I'm a very negative person in situations like this but I do it so to protect myself. If I see the worst case scenario and we get the best case scenario that's easier to deal with that the other way round. 

    Probably very stupid of me but I can't help it.

    Thank you! 
  • Adrian_ScopeAdrian_Scope Testing Team, Community Team Posts: 7,949 Scope community team
    It sounds like you're a realist @Rebecca90. I don't think that makes you stupid in the slightest. Hopefully her dad will grow to accept the diagnosis soon. Do you have much other family involved?
    Senior Community Partner
    Scope

    If you have a few minutes to spare, we'd appreciate your feedback on our online community.
  • Chloe_ScopeChloe_Scope Scope Posts: 10,662 Disability Gamechanger
    Hi @Rebecca90, it's not stupid at all! 

    It sounds like your daughter is doing amazing :)

    Being matter a fact is okay, you'll still be processing what is happening and this can take time.

    Did you look up the Navigate service which @Kate_Scope suggested? This something that could be really useful :)
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