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message to Lioness

imogen37imogen37 Member Posts: 61 Listener
edited May 2014 in Parents and carers
Hi Lioness

I read your amazing story about Megan (the one you posted as a response to Mrsfox) and would like to know what exactly did with/to Megan, what approaches or exercises you used and so on.

I am hoping to reach to similar outcome with Marten, who, at 15 months can't even hold his head yet. If there was anything I could learn from your experience, I would really appreciate it!

I think you are amazing!

Thanks!
x

Replies

  • mollymoobarnesmollymoobarnes Member Posts: 107
    Hiya

    My little boy Tom has quad cp and we decided at 11 months, when we first got Tom's diagnosis, that we would go down the Conductive Education route. At that point Tom could not open his fists, could not hold his head well, could not sit, roll or crawl. Tom is now 22 months old and is sitting better (although not for long), is rolling, trying really hard to crawl, is walking well when supported by his hands or with a ladderback chair. He talks amazingly well (more so than his twin sister, who does not have cp!) and is doing really well. I don't claim that conductive education is the cause of his successes - I think Tom's tenacity, bravery, humour and overall brilliantness is getting him through, but conductive education has taught him what it feels like to move and gradually, slowly he has started to move purposefully on his own. I also am about to start a new type of physical treatment called Deveny which comes from Hungary and which we hope will ease the tightness of his muscles and tendons and then help him work on the underlying muscle weakness.

    I don't have the solution - I wish there was one, but this is working for us. NHS physio is too few and far between . He has a bit of hydrotherapy which he enjoys but I dont feel that it is moving him forward. I havent tried the Scotson technique or Bobath - both of which come highly recommended. I guess I try to walk a fine line between what I think is enough, and what might be too much. I try to pick the right things for us and i try to balance his needs against those of his twin sister and older sister who is only 4. Will Tom thank me for a childhood spent entirely in therapy - probably not.

    I hope that might help.

    Maria xx
  • imogen37imogen37 Member Posts: 61 Listener
    Hi

    Thanks for reply!

    I should have said that ALL replies are welcome!

    We had really intense physio from NHS - she came 1x a week!

    Have looked into all 3 things you mentioned in your post, but decided to do Advanced Biomechanical Rehabilitation. Have been doing it from mid-jan and Marten is gaining strength in his trunk, head control improved, less spasms and involuntary movements and he is sleeping better. Also, 4 weeks into it he came off his home oxygen.

    The thing people comment on the most is how smily and content and attentive he is now. Even his consultant, who had been very sceptical about it, commented positively!! But we are also lucky, we have got a lot of improvements very early.

    So will my son thank me one day for spending every waking moment of his childhood doing therapy? He bxxxxx better!!
  • mollymoobarnesmollymoobarnes Member Posts: 107
    Hiya

    Marten sounds like he is making fab progress! It's not a therapy I've heard of so I'm going to have a read up tonight and then I'll probably stress about one more cool therapy that I don't have time to do! You would think that we might be thanked eh? All this worry, stress, time we commit, stuff we sacrifice - but if all is as it should be they'll hit their teenage years and tell us that we suck and that we got it all wrong cos that's what adolescents do!

    Maria x
  • LionessLioness Member Posts: 10 Listener
    Hi Imogen,
    When Meggy was born I didnt know what to do, I felt completely useless!! I already had three other children, I was a single mum and although my children were all born prematurely and had had different needs than children born 'normally' Meggy's needs where so complex that it was like being a first time mum all over again!! The hydrocephalus had crushed her brain, forced her skull apart and made her head twice the weight of her body, she couldnt move it, even turn her head at first, so, I took each problem one at a time.... Firstly I wanted to make her more comfortable and prevent plagiocephaly, so, I researched and designed a 'halo' to position and support her head and found a company to make them for me, that enabled me to help her to face different directions, so, I researched anything to do with stimulation and created mobiles and scenes for her to look at.... from there with the aid of the company, we created different ways of ppositioning her to stimulate her and strengthen different parts of her body..... when she was fifteen months we used positioning seating and accessories to support her and strengthen her core muscles... all through trial and error and she sat with the aid of the products for a few seconds without falling... and yep I cried my eyes out!! Since then Ive researched and deisigned everything her uniqueness needs and shes come on in leaps and bounds and now work for the company and Meggys their model and inspiration!! The best advice I can give is throw the rule book out!! Our children are unique, completely special and wonderfully different, if you try to follow guidelines, you'll end up frustrated, I used to compare Meggy with other children of the same age.... now I celebrate evrything she does in her own time. Meggys ten in may, she wasnt supposed to survive birth! She loves cbeebies and singing, she wants to marry JLS, she is doubly incontinent, she cant ride a bike, hop, skip, dress herself roperly, write her own name.... but, when she pushes her dolly buggy round the living room or sings at the top of her voice at three in the morning, she makes me smile.... I dont wrap her in cotton wool but I dont let her put herself at risk, I encourage her in anything she wants to do, I stimulate her constantly, but, I also accept and love the special person she is. xx
  • LionessLioness Member Posts: 10 Listener
    Huh? John, sorry.... can you explain what you mean?
  • mollymoobarnesmollymoobarnes Member Posts: 107
    Hi Lioness,

    I'd be really interested to hear about the weighted stuff you have as I have a feeling Tom might get a lot of comfort from using something like that. Did you make it yourself? Tom uses a baby sleeping bag still so a weighted duvet might not be right for him yet but some sort of weighted blanket or comfort toy might work.

    Maria x
  • LionessLioness Member Posts: 10 Listener
    Hi Maria,
    I get everything from www.togs4specialsprogs.com .
    Meg has a JLS weighted duvet, a Dora weighted duvet, weighted lap pads for when shes in her wheelchair and a weighted lap pet that she strokes and plays with.... everythings made specifically for the childs likes and dislikes and the weights are measured to the childs body weight, theyre fully washable and safety tested! The prices are brilliant too. Hope this helps!
  • sahilsahil Member Posts: 1
    thanks for this link....
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