Cerebral Palsy
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Calling all CP mums in Brighton and Hove - or sussex???

eviesmumeviesmum Member Posts: 13 Listener
edited May 2014 in Cerebral Palsy
Hi

Wondering if any CP mums are able to meet up on wed or fridays in the Brighton area. I am unable to currently access our local conductive education group as it runs on the 3 days that I work.

I have a beautiful 2 year old little girl who has PVL. Not crawling or talking - just sitting. Devastated doesn't even cover it - but you all know that feeling....

I'm struggling now in between worlds - my friends of able bodied toddlers are well meaning and caring but just trying to see them and their children is becoming too much of a struggle.

Is anyone out there able to meet and share coffee, laughs and tears??!

Much appreciated

Kelly

Replies

  • mollymoobarnesmollymoobarnes Member Posts: 107
    Hi hon

    I live in Burgess Hill so am not too far away from you at all. My little boy Tom is 18 months and also has PVL causing quad spastic cp. He too is not crawling although he's having a good go at a few words but isn't sitting unaided yet. I too am devastated so I'm with you on that one!

    Don't cut out your friends babe - I know it's hard - I don't have a choice but to face it as I have twins - one able-bodied and one not. It's important that you keep a foot in both worlds, for you and for him. My best mate has a little boy who was born the day mine were supposed to be born but we arrived 2 months early and he arrived on time. He's MAHOOSIVE! and walking. Actually, he's running, climbing, trying to scoot a scooter and all sorts of other stuff. Even Iris, my little girl without CP is not walking yet, but she was so so tiny when she was born that I know she's just got some catching up to do. All kids are different - cp or no cp. I know what you mean though - it's raw sometimes but you can't go through the next few years with blinkers on.

    I have a toddler group I go to in Hassocks on a Wednesday morning called Scalliwags and then I head home to mine and my mum comes about 1.30 ish for some time with her grandkids. I can't come down to Brighton on Wednesdays for that reason but I would love it if you would come to Scalliwags with me and then come to mine for lunch. Then you can stay when my mum gets here or head home - whatever you want. Scalliwags is a 'normal' toddler group, but they know me and the kids really well and are all very lovely. And we'd be there together with our lovely bubs so it would be fine. Fridays I am out at the Dame Vera Lynn School for PArents on Friday morning - can you come and join that group?

    Chin up Kelly - it'll get easier (I hope!) I have a 4 year old girl too so it's just bonkers.

    Maria xxxx
  • optimisticoptimistic Member Posts: 8
    Hi Kelly.
    Have you tried dame Vera Lynn school for parents as we attend conductive education there on a Wednesday.
    I live in lancing and would be happy to meet for a coffee and a chat. My little girl is also 2.

    I keep in contact with all my friends with children the same age for my little girls benefit even though it eats me up inside to see them running around. We have also had a difficult time as she seemed quite freaked out for a while by other children, I think the volume bothered her.

    Kerry
  • mollymoobarnesmollymoobarnes Member Posts: 107
    Hey Kelly

    How you doing hon? Are you going to Ellas Field for the next few sessions? If so will see you there. Sorry I haven't been in touch - have been up to my eyeballs in it. We accidentally stumbled across the house of our dreams (just round the corner from where we live now), put our house on the market the next day, got a buyer the same week and had our offer accepted today! Woo-hoo - Tom will have soon have room to use a walker and, for when he's bigger, there is a room downstairs to use as his bedroom when he is too hefty to lift up and down stairs. We are so chuffed but it's been exhausting! I've had to declutter, hide stuff everywhere and pretend we live in a lovely clutter-free house while we've had viewings going on. Thank God no-one asked to see the understairs cupboard or it would have been a disaster with stuff falling out all over the kitchen!!

    How is Evie? Tell me all your news - how was Christmas?

    Love

    Maria & the kids xxx
  • eviesmumeviesmum Member Posts: 13 Listener
    Hi

    Sorry I havent been on the site for a while and have only just seen your reply.

    Funnily enough we will be starting at the Dame Vera Lynn on the first wednesday after easter so I guess I will see you there??

    We don't also have a physio link in common do we? Do you go or have been to a practice in shoreham? With physios called Julia and Helen? I was passed on a name and number of a CPmum when Evie was first diagnosed 18 or so months ago and I was too head in the sand to use it or engage with anyone.. was that you??!!

    Its a small world...

    Evie has had that exact reaction to friends children - although copes well at mainstream nursery ?! Well done for seeing your friends - I battled on with it for a year and then admitted defeat. it felt like it was hindering us more than helping us...:-(

    Would be nice to meet before Dame Vera - if you are around on a friday I am in central brighton - but could venture up the coast a bit if that helped...

    Kelly x

  • eviesmumeviesmum Member Posts: 13 Listener
    Hi Maria

    Sorry I've kept missing you! Online and in person!

    We missed the last Ellas field because Evie had been feverish over the weekend ( and that room is soooooooo cold!) the one before was just Evie but she did really well and Alex was lovely with her.

    It will be a lovely place to go in the summer months... We will be at the next one I hope - layered up!

    That is great news about the house - you must have been up to your eyeballs... When are you actually in?


    I think I told you we had a shocking xmas with matts mum losing her cancer battle - its still like swimming upstream but what can you do?

    We have been accepted at dame vera on a wed! Which is great but feel very daunting. I work mon tues and thurs - conductive education on a wed, then friday to recover???!!

    Evie is now in a standing frame which she is tolerating really well. We are planning to move this year, carrying her up and down basement flat stairs is not getting any easier.

    All the therapy continues and I think I am going through a frustrating patch where huge efforts reap minimal progress - my sisters little baby is nearly 8 months and I'm already noticing the differences - he said ma ma maaa last night not with any meaning just the sound and big tears just starting plopping down my cheek whilst I fed him. I feel like I am never going to hear my beautiful girl speak to me and it doesn't get any easier to accept...

    So the rollercoaster continues..

    Lots of love to the brood - hope to see you soon

    Kelly x




  • mollymoobarnesmollymoobarnes Member Posts: 107
    Hey Kelly!!!


    So sorry to have missed you the last Ella's Field - my back has been SO so painful and that weekend was the worst - I couldn't get back from my mums as I was unable to drive! Terry had to be collected from my house and driven back to mums to drive us all home! Am slightly better now but still not right - when you have a child wirth CP there is no avoiding lifting or bending is there?! I have had no chance to rest it - the house move is imminent and Terry works all week so I have been sorting the loft, garage and shed and generally hoofing stuff about. Anyway, I'm glad you got a one-2-one with Alex because she was able to really concentrate on Evie and I think the times that Tom has benefitted most from Conductive Ed have been those one-2-ones with Alex when others havent been able to come. She is so utterly wonderful and Tom loves her SO much. It's almost embarrassing for him becasue he just can't keep his eyes off her and he coos when she kisses and cuddles him!! Such a big flirt he is!

    The house move may be the week after next - our buyer has suddenly told us he needs to be moved by the cut-off date for stamp duty relief (24th March) because he's a first time buyer and he won't have to pay it if he's in by that date. The house we are moving to has a bit of woodworm so that needs to be treated and the purchase of house they are moving to is going SLOWLY so we might miss the deadline yet. We are all so so excited but it's such a lot of work and I have done it all on my own so far as Terry is so caught up in work.

    Yeah you said Matt had lost his mum when you e-mailed before - such a shock and a HUGE thing to deal with - hugs to you all and just remember - it won't always be this hard and better days are on their way.

    Tom has also just got a standing frame! It's given me a bit of freedom to not have to sit with his all the time to keep him upright but he won't be in it for much more than 25 mins and then he's bored! How's Evie getting on with hers? Have you looked at walkers yet? Tom has one on order as we speak. I have a second hand one we got on eBay which you are welcome to borrow when Tom's new one arrives, just to see if she can mobilise herself in it? It's fully supportive, with a chest harness, a seat and arm rests (see http://www.adaptivemall.com/hippowihasm.html). Let me know.

    Listen you - stop comparing your babe with other children - it can only lead to tears. I KNOW that Evie is not doing all the things you hoped (and yes, I too have moments when I have to gulp back a sob) but we can't make it better quickly so there is no point torturing yourself hon. I have a direct comparison everyday so I guess I have had to get used to it - Tom and Iris were born 1 minute apart and have been brought up in the same way with the same opportunities - Tom cannot sit and Iris is just starting to walk unaided. It's hard - I know that, but you can't carry this overwhelming grief with you because she needs you to be positive. Changes will come, and have come, but they are very small and they take a very very long time. Celebrate the little things - your baby finds everything so much harder than your sisters child so I would say that your sisters little one deserves less recognition for saying maamaaa than Evie does for even the tiniest thing she does that is a challenge for her.

    and so the rollercoaster continues! See you on the next loopdiloop babe xxxx

    Love

    Maz
    xxxx
  • eviesmumeviesmum Member Posts: 13 Listener
    Hi Maria

    Would love to try Toms spare walker - our therapy services are ridulously slow at providing anything.. are you going to ellas field at the weekend? If so could you bring it for us to have a go with?

    Will email you.. xxx
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