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Twins age 3 - one with CP

jenster22jenster22 Member Posts: 9
edited May 2014 in Parents and carers
Hi, Ive never posted on a forum before but read other peoples posts for some time.

Im a mum of twin boys, nearly age 3 one with CP and Visual Imparement. We also have a 6yr old too.

I was hoping to find someone/people/anyone in a similar position to us.

Joe has a mixed batch of CP, his legs and hips are very tight and his mid section very floppy. His arms have improved but still gets tight when excited or frustrated.

He also self harms alot, bites himself so much his skin has gone hard and callous and hits himself so hard in the face and head im amazed he doesnt knock himself sideways!

His VI has improved drasticly since he was born but his optic nerves dont work so hard to be positve about how much he can see

He cant walk sit or stand, he cant talk and cant crawl but can drag himself a couple of feet with his arms and he can roll over.

He is however the most gorgeous boy and when he smiles he makes your heart melt.
He is very hard work and mostly worth all the work (can you tell im on a good day today!!) but anyway ...

Joe and his twin dont really get on, I wondered if anyone else found this?
I know it could be jealousy of the amount of attention Joe needs but im worried that they didnt bond because Joe was in hospital for so long.

If anyone can relate to any of the items covered above or if anything sounds similar it wold be great to hear from you.

(Ive got loads of issues i would like to discuss but starting off slowly!)

Thanks x

Replies

  • stephanie87stephanie87 Member Posts: 4

    Hi,

    I am in a similar situation to yourself, I have twins who will be 2 in september and they have never really had that bond that I thought they would. Jack has CP and same as ur son he can't sit, walk or stand, he is just getting the hang of holding his own head up as it has been very large due to fluid built up in his brain.

    Many people say to me that my boys must be close and are always shocked when i explain they arent, Dylan doesn't have any interest in Jack although he is fascinated by other childen, I have always put it down to the fact that Jack isn't at the same stages as him in development and can't play with him the way he would like him to. Dylan will do things like give Jack kisses and hugs (although Jack doesn't particularly like it!) but it is mostly when asked to do it. He stands on him when Jack is laid on the floor and sits on him which I honestly don't know if it's through dislike or attention? I tell him off for doing it so maybe he wants the attention?

    I wish my twins were closer like you do, I just keep thinking that as Dylan gets older he will develop a protectiveness for his brother. I will also add that my boys were in special care together from day 1 until the day they left to come home 2gether so there is a chance that ur twins may still not have bonded as well if they were together as much as mine were. When they were young I used to sit watching them in the hospital wishing they could be in the same incubators as I thought they would be lonely and at first I blamed it on the fact they were taken away from eachother at birth for a long time but I genuinly think that Dylan would play with Jack alot more if he could sit. Sorry Im going on now, just don't know anyone with twins in which one is disabled so feel I have lots of questions :)

    As regards to Jack we have been told his sight isnt so good, they were concerned he was losing sight in his left eye but due to patching up the better eye, the other has improved. It can be very hard to take in as you feel they are challenged enough in life as it is.

    Can I ask what happened with your son's eyes to cause the optic nerves to not work, was it pressure in his head?

    Steph

    xx

  • CLS3CLS3 Member Posts: 1

    Hi, I have not posted on a forum either, and like you have been reading other peoples.  I too have twin boys one with Cerebral Palsy  and I also have a 6 year old daugher. 

    My boys were born prematurly at 27 weeks and our family life was turned well and truly upside down.  They remained in hospital for 14 weeks and came home with one twin on oxygen. 

    My boys have done well, and are due to start mainstream school in september which is something I didn't think we would ever see.

    My son can't walk and sits upsupported to a fashion, he struggles with balance (which is non-exsistant when standing).  He has however during the last 10 months learnt to walk using a 'K walker' he uses this to get around at pre-school.  We are lucky as his speech has come on well during the last 12-18 months, and he communicates well, as he now has a statement he receives weekly sessions with a SALT.  We too are under specialists for VI, but as of yet we are still unsure how much vission is effected.  We have had good support and Physio has been regular since birth.

    I wouldn't say my boys don't get on, but the twin who is okay is more interested in doing his own thing and going off playing with the other boys at school rather than making sure his brother is okay.  Maybe the "twin thing" comes later!  We too have had the biting issue, but no hitting yet.  He seems to bite his hand when frustrated, he has also  a couple of times bitten his brother and sister. 

    I would like to here about your other issues, as I have found in the past mums are such a great source of information and advise.

     

  • jenster22jenster22 Member Posts: 9

    Hiya,

    It was great to read your reply.  Its nice to know that there is someone else in the same position, so many times you just feel like youre on your own.  You know there are other disabled children and you know its hard and other people have got it worse too, but you wonder if anyone is going through the same thing as you!

    Hagan and Joe were born at 32 weeks, they went to special care as a precaution and hospital policy but were allowed home after 5 days.  They were both totally fine. 

    My 6 yr old caught a cold, then hagan got it and then joe, they both got through it fine but Joe didnt cope with it, i think there must have been some underlying health problem somewhere and he just couldnt fight it off.  He got very flopp, wouldnt feed was sleeping alot so i took him to get checked out.  within seconds of arriving at hospital Joe stopped breathing.  they managed to bring him round twice and got him onto a ventilator. 

    He was transferred to Alder Hey and spent about a month in intensive care.  He couldnt breathe by himself and had forgotten how to suck and feed.

    Eventually we came home and i started noticing little changes between the twins, my brother is an optician and i begged him to get him looked at as he wasnt fixing and following.  It was the next couple of weeks when our lives crashed!

    We were told his optic nerves dont work due to the brain damage, he had fluid on the brain and had a mix of all types of CP. Every appointment seemed to get worse and worse. 

    Ive sort of lost my train of though now.

    Sorry for the massive post - its never a short story explaining the first few weeks!  Believe me the next 3 years will take pages and pages so ill stop now!

    How do you cope with everything?  Working, personal relationships, social time and good and bad days etc.  Ive got so much to ask but dont want to scare you off with massive posts!!

    x

  • laujoka3laujoka3 Member Posts: 3
    Hi ,

    I have only just found this forum and am so glad. My twins (girl/boy) were born at 30 wks and Laura has spastic diplegic cp, visual impairement, and hydrocephalus. They are now 2 and a half. I would love to chat to any other parents on the forum!
  • mollymoobarnesmollymoobarnes Member Posts: 107
    Hiya

    I have boy/girl twins too. They are 18 months old now but were born at 32+4 because I developed pre-eclampsia and Iris was struggling. They were in special care for a month, mostly for feeding issues but came home with a clean bill of health. Tom was a really happy baby for a few weeks and then developed terrible terrible colic. He also became completely stiff when he was distressed (which was all the time), plus just 'felt' so different to Iris and we waited a long time for first smiles and proper eye contact from him. We took him to see so many doctors and specialists about his colic and everyone kept telling us that it would pass but we KNEW in our hearts that there was something really wrong. At 11 months, in April this year, the doctors had to admit that Tom didn't have colic, he had quad spastic cp. We will never know what happened to cause his brain injury but it seems that it wasn't at birth or in the period of special care. He has PVL on both sides of his brain, to the lateral ventricles, and they say it may have been due to a blood supply issue in the womb.

    As with the other folks who have posted, my twins don't seem to have that strong bond yet - Iris finds tom quite heavy handed and 'grabby' so she starts flapping her arms to drive him off before he's even touched her. He gets a lot more mummy and daddy time than she does and gets held a lot more because he is unable to sit unsupported. I wonder sometimes if she gets jealous of the time with us that he gets and she doesn't but she's such an independant and feisty little madam that she wouldnt want all the cuddles that he gets anyway! She's crawling and off having fun with her big sister Molly who is 4. she's not interested in playing with Tom for more than a few seconds and that's usually when they squabble over a toy and both want at the same time.

    I'm not too worried at this stage though - Ithink it is a developmental difference and I hope that at some point she'll be more interested in him. They sleep in the same room, in different cots, and are quite happy. They used to sleep together in the same cot and always slept really well all snuggled up together. Very occasionally I catch her laying her head on his tummy and she says 'ahhh' or she gives him a little tickle, and then just as I go to tell her how lovely she is being, she pokes him in the eye and crawls off to find Molly!

    It would be great to talk to other twin mums out there!

    Maria x

  • mollymoobarnesmollymoobarnes Member Posts: 107
    Hey hon

    I am also a twin mum - mine are 19 months old. Iris is able-bodied and Tom has quad CP. I also have a 4 year old. My twins don't like each other all that much either - Iris is warmijng to Tom slowly and will ocassionally lean over pat him on the head and say 'Ahhh' but more usually she either just crawls over the top of him and nicks his toy, leaving him hysterical, or objects vehemently anytime he goes anywhere near her. He can be very heavy handed because his movements are awkward and because he's so strong but he doesn't mean to hurt her. Well, he does sometimes, but he's a boy so it's all normal I guess. I'm hoping that in tiome they will develop more of a bond but at the moment my girls play togther more and Tom gets a bit left out. He's not able to sit or crawl yet so if they decide to move off he has lettle way of getting to where they are other than rolling. Plus he won't play dollies, which makes him much less interesting!

    Tom also bites himself (and us occasionally) when he's frustrated. He's not done too much damage yet - just a little cut on his hand, but I hate seeing him do it. I don't know what I'll do if that gets worse. He's so sensitive - if you tell him off his little lip sticks out and on come the tears. I have to try to explain that I am not cross with him but I don't want him to hurt himself. It must be hard seeing his sisters do all the things he wants to do - no wonder he gets frustrated. We've just got him a walker so he should be able to join in more and will love having an upright view of the world - maybe he'll stop biting now?

    Tom is also a little star - a real smiler who has everyone wrapped around his little finger. He's really engaged, engaging, funny and bright. His language is really coming on and I think cognitively he is probably unaffected, but physically his body gives him a load of grief! He's like Joe - arms and legs really tight, mid section floppier (but his insides are made of concrete so he finds getting wind up a nightmare and suffers from trapped air all the time). He's had his bilateral covergent squint corrected with Botox so his eyes are much straighter than they were but his brain doesn't use his eyes together to get a stereo picture so they might go wonky again i time, meaning he'll need surgery to correct them. Having said that, his vision is good - he's just a little long-sighted and has got little glasses (which he hates and won't wear!)

    I'd love to chat - let me know how life is and how you're doing. It's hard isn't it? Being a twin mum is hard enough. Having an older child too makes it more hard but to have a child with a physical disability on top makes things almost too much to handle. I must admit I am finding it a struggle at points but I also feel utterly blessed to have them and that is always the over-riding feeling.

    Love

    Maria x
  • YureiYurei Member Posts: 8 Listener
    Hi All,

    I've read a handful of the above posts and thought i'd add to what's been said. I'm 21 year old a triplet with CP, my brother and sister are both able bodied. I though a little perspective may help.

    When we where younger (1-3) my brother and i weren't close, i used to try and join in best i could but he and my sister would tend to go off and play.and i'd sit and watch (according to video i've seen and what my parents have said) . We actually ended up getting closer through primary school as we were in the same class and spent a lot of time helping each other, I like to think he got the brawn and i got the brains. Anyway my point is although they don't seem close now if they're anything like my brother and I there will be a time where the able bodied one will start to look out for their sibling (even if they do go off and do their own thing a lot) Just don't try and force the issue it'll happen in time.

    Matt.

    .
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