I'm a worried Dad. My 1 Year Old son has severe CP. His mum is depressed and anxious. Help!

BWal22
BWal22 Online Community Member Posts: 3 Listener
in Families and carers
My son was born last March at 31 weeks gestation. He spent the first 50 days of his life in NICU before finally coming home. 
A head scan and subsequent MRI revealed PVL and since then he has been formally diagnosed with CP, impacting all 4 limbs.
We are REALLY struggling. I'm worried sick about his mum who believes her life is over and she is destined to be his carer forever. He constantly cries. Is 14 months old now and cant even roll -  let alone sit, crawl or walk. He also cant communicate which makes it all the more difficult.

I'm stretching myself as much as I can to pay for private Physio, including signing him up to Brainwaves but I feel that it's not enough for him. I have a fairly good job but that just means that I am unable to claim any financial assistance. Since my partner is looking after him I am baring the weight of all financial outgoings. I am lucky I guess since I get a break from reality whilst at work - but my partner is constantly in a world of depression and a shell of her former self. She sometimes talks about wanting things to end. It's that bad. Our dreams feel like they are a dim memory.

I really don't know how to get out of this spiral. I thought it would get easier as he gets older but if anything its getting harder as the physical implications of constantly carrying him come to the fore. You cant leave him alone for a minute or he will cry.

Is there anything I can do?!
Will this get better with time?
How do I even think about helping his wonderful mummy without forcing her to go to the GP...and would that even make a difference?!

Losing the will to live here...

Comments

  • AlexW_Scope
    AlexW_Scope Scope Posts: 223 Empowering
    edited May 2017
    Hi @BWal22,

    Welcome to the community - I'm glad you've felt able to able to post your message. I'm really sorry to hear about the struggles you've been facing.

    There's quite a lot you've mentioned in your message, so to begin with:
    • Have you had any been able to access any support via your local authority? There may be some services that can help with the practical side of the sleep and the development of your baby.
    • Regarding your partners wellbeing, it would be worth encouraging your partner to perhaps speak to her GP 
    In case you haven't already seen it, we do have section on our website that is dedicated to providing information for supporting families.

    and we also have 'Connect families' which is a free service that connects parents of disabled children together which might be really helpful? If you would like to find out more you can contact Juliet Blackburn on 0145 463 2340 or email directly on juliet.blackburn@scope.org.uk

    Hope this information helps,

    Alex & Kirsty 
    On behalf of Scope 




  • BWal22
    BWal22 Online Community Member Posts: 3 Listener
    Thank you Alex/Kirsty
    I will certainly drop a line to Juliet as that may be helpful.

    Regarding our local authority...that's half the battle to be honest. There are just so many appointments and almost too many people involved who are not joined up. I'm sure this is something you've heard of before!

    I'll get my partner to speak to her GP...easier said than done though!
    Thanks again
    Ben


  • Nystagmite
    Nystagmite Online Community Member Posts: 595 Empowering
    Do you receive DLA for your son?
  • BWal22
    BWal22 Online Community Member Posts: 3 Listener
    Yes, we get middle rate. It all gets swallowed up with Physio.
    To be honest I think we may push back as he should be higher rate surely!
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,602 Championing
    Hi @BWal22 welcome to the community and thanks for your post.  I can't really add any more than Alex and Kirsty but wanted to let you know that this community is a safe space for you to share and I hope you and your family can get the support you need.
  • marty1971
    marty1971 Online Community Member Posts: 4 Listener
    Hi, oh my seems like yesterday that I was where you are, take one day at a time, do not look too far ahead, at 14 Months he has huge potential, he will grow big and strong and who knows the progress he will make, the love he will give will give you the strength you need to love and nurture him,.  Take the time for yourselves, not easy I know,  gradually the services will come together to support you as a family, this unfortunately will take time,  listen to him and be there for each other, support each other, you are stronger  together, I hope you find the strength to cope with the change that has come into you life's, it is just a change, a big one, but still just a change of life, you both still have a  life to live.
  • geejay
    geejay Online Community Member Posts: 1 Listener
    Hi,
    i remember felling exactly as your wife does when my daughter was small. It's totally overwhelming and in some ways you are still going through a grieving process . Grieving the loss of the child you had expected and the one you now have. 
    Also in the beginning there are so many appointments. 
    Things will definately get better as time progresses and you both get stronger.
    All you can do is be there for one another. Look for local support groups.
    Try a charity called family fund for help with physio costs or even for a short break.
    my daughter is now 23 and such an amazing person. She has enriched our lives so much.  You will both get stronger .
    hope things work out for you all as a family.


  • zoe123
    zoe123 Online Community Member Posts: 12 Listener
    Hi,

    Reading your post, I can relate a lot to what we are going through. Our baby girl was born flat and has CP. As a lot of members said your partner is still grieving and being a mother myself I can tell you it will always be there the feeling of losing a perfect child. But this is how life is, we never know what is coming next moment, next day. 

    As family you are your partner need to get strength to fight this hard time for your beautiful boy who needs a lot of help and encouragement to get there where you want to see him. And trust me, if you are doing all right things to help him, he will get there. Our baby girl is 12 months now and she can't rollover yet. we are hoping she will one day. She knows she should be doing a lot more. We have to carry her as she get frustrated when can't move plus yeah a lot of crying which is one way of them communicating with us. 

    Your partner's reaction to situation is perfectly normal. She needs to talk about it share it with people who listen not with everyone. You are very supportive to be there for both of them and it will all get better. Don't hope for others to react as you like as they never get to experience what you are.

    Our family is there, if you and your partner want to talk to us.
  • [Deleted User]
    [Deleted User] Posts: 728 Listener
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  • welwynbabe
    welwynbabe Online Community Member Posts: 3 Listener
    Hi I don't know where you are based but I have just cone across your post. My son is 3 and has severe quad CP. We also go to brainwave and we found a place in North London called the London center for children with cerabral palsy the do early intervention classes once a week for no cost. We found them very lovely and knowledgeable it is a school for primary aged kids with cp so they know exactly what they are doing. 
    I can also understand how your wife is feeling although in our case I work and my husband gave up work due to the difference in wages. I found my anxiety got worse when I went back to work and I couldn't cope with replaying conversations in nicu and the what ifs. I eventually went to the doctors and was given tablets that have helped massively. I hope you all are ok and I wish you the best x

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