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Isolated and confused!

charlnellie Community member Posts: 12 Listener
Hi, I'm Charlotte, my fifteen month old daughter Ellie has severe CP and is profoundly deaf due to being twelve weeks early.

when i first had Ellie my friends and family were supportive, but have dwindled away gradually and now i feel we have nobody.
its the small things such as not being invited out to the park with them any more etc. I know i sound petty but its like they don't want to know us any more. I'm just at a loss as Ellie is still capable of a smile! Has anyone else been through/going through the same? x


  • panther
    panther Community member Posts: 251 Courageous
    Hi Charlotte

    I'm an adult with mild cp which affects my legs and walking and as I've got older I've started to use a wheelchair some of the time.

    I really felt for you when I read your post. Both as a child and even now as an adult I've had many times when I haven't been included in things that other children or people were doing.
    It's almost as if people are embarrassed to be seen out with me or they think they might catch something!!
    There were times as a child that some of the other people in my class would say you can't do this with us because we don't want to be seen out with you etc. It hurts but eventually you just learn to accept it and try not to let it get you down too much!

    It must be really hard for you as a parent to be seeing this happening to you and your daughter so early on in her life. Have you looked into if there are any special needs support groups you could join? Or special needs nursery type things that you could take your daughter to and maybe meet other people in the same position as you.

    I haven't got any children of my own yet but I'm here to maybe help and listen if you need someone to talk too.

    Take care
  • charlnellie
    charlnellie Community member Posts: 12 Listener
    Hi Helen.

    Thank you for your reply.

    Ellie and I attend an 'opportunity group' once a month which is held at the local hospital but there is nobody with anything in common with us, I just get upset because their children have all five senses (that sounds very petty doesn't it). So we have recently joined the deaf pre school group, its twenty miles away but its worth going! All the children there have cochlear implants, and a few of them also suffer with CP, they're bright young things, but ll live so far away so I can't have a bonded friendship with them.

    I know what you mean about some people thinking CP is contagious, I offered an old colleague of mine some of Ellies baby stuff that she had grown out of, and she couldn't get away quick enough!

    I have an appointment with Ellie at Park lane school in Macclesfield where communication and independence are the name of the game, What do you think? She can start there when she is two, which to be honest I can hardly wait, Just to have a little time to breathe! Ellie did go to a childminder once a week, that lasted for four whole weeks before the childminder quit, as Ellie was too demanding and scared her-this is an ofsted registered woman!!!

    I'm also glad you have written how it is in your reply, some people try to sugar coat these facts, I like the straight talking! Lol.

    Ellie has recently had a standing frame delivered, it takes up a quarter of the living room, its huge, but she loves it, as long as i blow bubbles at her while she is stood in it!
    Ellie and I seem to have formed a very unique bond, as I play mother, protector, secretary, nurse, and everything else, it's difficult for me to understand why her some times, if she was 'just deaf' or 'just a CP sufferer' it wouldnt be so bad, but she's both, i struggle with that some days, where as Ellie, fortunately doesn't see what all the fuss is about, although she is beginning to get VERY frustrated at sall things, she is so bright you see, and that's what hurts so much.

    We have no 'friends' left to tell as they've all gone, maybe thats for the best, as they mustn't have been real friends in the first place. I just wish i could take all this pain away from her, I'd walk on hot coals for her and quite gladly give up my hearing and everything else i could for her. So why does everyone else see her as some kind of monster? I'm proud of everything she is and everything she's not,and one day, they'll all see what they missed.

    Do you go to any groups or anything?
    I took ellie to a mum and tots group once, never again, they were all mums of perfect children and their biggest worry was the MMR injection! I tried going, but they just didn't get it, they were just in disgust at the thought of who Ellie is. I feel like we're not sociably acceptable, so we keep ourselves to ourselves, and i try to keep Ellies CP hidden as much as i can in public, but i cant do that forever, I haven't got the guts or the strength for all the staring and whispering, i dont want her exposed to it, i want to protect her as much as i can, but i realise i cant do it for ever. What did you do?

    I'm sorry for going on, Hope to hear from you soon,

    Charlotte x
  • panther
    panther Community member Posts: 251 Courageous
    Hi Charlotte
    Glad my reply helped a bit and don't ever worry about going on too much we all need some where to voice all these thoughts in our heads and sometimes this is the only place to do it.

    Things were different when I was younger but I know my parents had to fight to get me into 'normal' nursery and schools etc rather than special needs schools. I guess as a small child it never bothered me I just wanted to do all the things my older sister did. But as I got older and my parents were more protective of me and wouldn't let me do things it become frustrating. I know my parents used to get a lot of abuse off people because if I fell over in the street they carried on walking and I had to learn from a young age to get myself up and catch them up. But they worked on the theory that they weren't always going to be there and I had to learn to cope on my own when I fell over. Now by the time people have registered I've fallen over I'm usually back on my feet!!

    I can't lie to you and say there's any easy answer to the situation you are in feeling like you've lost all your friends. I think I was about 7 when I realized that I didn't get asked to friends houses and things and that has carried on into adulthood. It was very noticeable when i was a teenager all the other girls in my class would be getting the bus into town at the weekend but i was allowed to go by my parents and was also told by people at school they couldn't be seen out with me because i wasn't normal and it embarrassed them.
    It does get you down and there are days i'll sit and have a good cry and feel a bit sorry for myself even now at 36!! But then you just have to say they're not worth it. And to be honest you just get used to life being like that.

    I think it's great that you have an appointment for park lane school if you can get Ellie in there it will be good for both of you as it will help her and give you a much needed break we all need that breathing space now and again and maybe you will meet other mums that you can share some of what you are going through with.
    It broke my heart when i read your comment about you try to keep Ellie's cp hidden it also brought back a memory my mum told me I was about 4 or 5 years old and was supposed to be walking with 2 sticks at all times but i was putting these sticks behind the teachers desk and they stayed there all day until home time. My parent told the physio this so the physio said i had to decide if i was going to walk with the sticks or walk with a funny walk the rest of my life. i apparently walked to the end of the corridor with the sticks turned round threw the sticks back and then walked back to the physio saying i'll walk with a funny walk i guess i haven't looked back since although now i'm older i use a wheelchair a lot of the time when out but still walk indoors.
    I'm sure ellie is a beautiful happy child and you are proud of her no matter what. So what if people stare it's only stares they'd stare at you too if you had a funny hair cut in some ways it's no different. Go out there and weather the stares and comments and show ellie that it's ok they don't hurt. Set an example to her so she learns to just brush off peoples stares after all ellie will learn from you if she sees you coping it will help her be a stronger person too.
    Sorry i've gone on a bit now hope some of it helps am happy to chat any time so feel free to keep this conversation going. love to you and ellie. love Helen x
  • charlnellie
    charlnellie Community member Posts: 12 Listener
    Hi! Sorry not been on for a while! I hope you're well?

    You're right, I can't shield her from the world for ever and I have got to teach her to be strong and independent because I'm not going to always be there as much as it pains me to say! I have done a bit of thinking, and I have come to the conclusion that people stare because it's the fear of the unknown to them, either that or theyre just plain nosey. I was out shopping in Hanley a few weeks ago with Ellie and a complete stranger walked up to us in HMV and bluntly said, and i quote 'whats up with her?' as Ellie still had her oxygen tank aswel as looking terribly uncomfortable with her hearing aids in bundled into a stroller, which to us is the norm.....I didn't know what to say, I was angry at her for being so nosey on one hand, but quite admired the fact she asked me outright instead of staring. I didn't know which reaction to go with, so i told her the truth, and then she just walked off as though we'd never spoken, it was a very odd experience.

    Which feeling would you be more inclined to have?

    In Ellie's future, I can see her birthday parties consisting of all Abigails friends if i dont pull my finger out and do something, Ellie is ALWAYS going to be on the side line and that is whats hurting. Although, i even took her rock climbing the other day with me! I have managed to get Ellie into a small, but normal nursery and the teacher of the deaf and her physio go in at least once a week, it's all very new for Ellie, but im determind she is going to be strong willed and have all the motivation in the world.

    As you can tell, i have had a productive, pro active week, i have these now and again. I know it isnt fair for Ellie to have to fight that little bit extra for some thing but i have to teach her that all things she wants are worth the fight, and that starts now. Hence the nursery!

    The next step is actually putting my money where my mouth is and taking her out without showing any upset or fear. I know what has to be done in theory, But can I actually do it?
    I took ellie into the front garden in her special chair, made for her by the company R82, everyone who walked past could see her, but it was only the children that walked past who really stared, a few of them giggled, so i took her a little more out of view, but we had a great time, which shows me she has got to go out and experience things. It's just people can be so so cruel. I was brought up to respect others and never make fun at peoples misfortune, hence why i worked in the care industry for ten years, i have the compassion, but not pity, it's an equal balance. I just wish people weren't so ignorant to different types of people. The biggest thing to knock my confidence with Ellie is i over heard some one i know call her a 'spac', this broke my heart, but i just cuddled her up closer, walked past them with my head held high, and as we walked past her, Ellie smiled at me, so i knew she wasn't affected because she's only a baby, but what about when she gets older? She'll know what that kind of cruelty is and will be on te receiving end of it, How can we stop it?

    Have to dash, Ellie is awake, She hates sleeping, she must feel as though she is missing some thing really great! lol, Take care, Speak soon, charlotte xx
  • chippy
    chippy Community member Posts: 2 Listener

    I can completely relate to everything you have said. My daughter Jessica is 3 in August and life is so "different" to that of my friends who are fortunate to have healthy children. People do disappear but I was only talking with my husband about that the other day and we agree that you are better off having one or two true and sincere friends. In the world we live in I haven't the time for fair weather friends. I think as time goes on you will become tougher and deal with your emotions differentely. It is a rollercoaster but you will "turn corners" and find that certain things do not worry you like they used to. I have befriended a couple of mums with children who have disabilities and have grown quite close to them. Where old friends drop off, you will make new friends. Dont be afraid to start a conversation with a mum while you are in the hospital waiting room, or at a physio class, or a group or somewhere where there are people in a similar situation to you. It will be very likely they are feeling the same but worry that you may not want to be approached...............try it next time, and you may find you make a good friend. Always happy to talk, dont be lonely..........(it's too dark in lonelyland!!!) .

    Mandy x
  • liv
    liv Community member Posts: 16 Listener
    Hi Charlotte and Helen,

    I read your posts and just had to say hi. I have twin boys, Evan and Charlie and Charlie was diagnosed with cp at 7mths old. They are now 16 mths old. Whilst we have all the help and therapy in place for Charlie and we pushed very hard to get that early, I have been going through similar feelings of isolation and sadness this past couple of weeks. It is all so frightening and exhausting at times and I don't think other people realise how a small comment or their behaviour can affect you.

    I started going to a twin group locally and just couldn't face all the competitive mothers and their worries which to me seemed so trivial (I don't mean to sound uncaring when I say this as I'm sure you'l understand) I now go to a group twice a month which is run by the portage workers and it is just fab! You don't have to explain a thing to anyone as everyone just 'gets it' and the kids are lovely and really enjoy it. I think a lot of people's reactions are down to ignorance and fear, but they have to remember that that child is another human being with the same fears and feelings as them, they just can't show it in the same way. I knew nothing about CP before Charlie's diagnosis and am learning so much from this gorgeous little boy and his brother! It can be so difficult at times.

    Then there's all the equipment to get your head around....but it helps him so much.

    Charlie is having an MRI next week and I am just worried sick.....I'm starting to babble now as I'm rushing! I probably haven't made much sense but felt I wanted to make contact and just say I understand how you feel and you're not alone. Sending you big hugs. Liv x
  • charlnellie
    charlnellie Community member Posts: 12 Listener
    Hi Liv!

    Thanks for your experiences shared in this topic! Ellie had an MRI scan in March, there is nothing to worry about I promise - He may just get cranky from being nil by mouth! They didnt give Ellie a GA they just gave her a medicine to sedate her for twenty minutes.....That was Manchester Childrens Hospital, Theyre really good, Although Ellies scan was for her cochlear implant programme. I know exactly what you mean about people not 'getting it'......

    I feel some ones behaviour or reaction can affect my mood for the rest of the day, I get up in a morning fine, and by 9:30am, I'm in fits of tears or depressed and feeling at a loss because of some comment.

    How do you cope with two children? I have an elder daughter who is seven on a sunday, my partner and i had planned on having more children, but Ellie is so demanding, i dont feel it would be fair on any other children to bring them into this, and for this i feel great sorrow.
    I dont know what to do.

    I took Ellie to a deaf pre school group yesterday, and it was BRILLIANT! We also were measured up for a sleep system for Ellie. Do you find the equipment takes over your house?! Our sitting room is crammed full of stuff, but we know it's going to help her, we have even bought her a yoga ball to do some physio on.

    Where abouts in the UK are you from? There are no support groups in Macclesfield, there's not much call for them here.

    Better dash, Ellie wants her lunch, Take care, speak soon! Charlotte. x x x
  • charlnellie
    charlnellie Community member Posts: 12 Listener
    Hi Mandy!

    I like the term 'fair weather friends'.....It describes them perfectly!
    Thank you so much for your advice, You're completely right about the not being approached thing, Some times its difficult to tell if some body is approachable or not. But, then again, I have nothing to lose, only hopefully friends to gain! Speak soon I hope,

    Charlotte xx
  • renacahill
    renacahill Community member Posts: 145 Courageous
    Hello Charlotte
    I am pleased you are getting many replies, I think everyone relates to the isolation you are feeling, I found it very upsetting to read how even your family dont understand how much you need to talk and share.
    My daughters baby, another elli (elliot) is 21 months and has CP, he is not too badly affected but because he is affected in all 4 limbs and has a weak trunk it is very slow progress, there are so many areas to work on we need a check list! I help my daughter out 4 days a week (the other 3 I work) and her husband is very supportive. Again she has had 'friends' who have made comments and have dropped away - or been dropped!
    I think having a special needs baby has taken away a lot of her confidence in talking to people and making new friends, even mums in the same boat she is a bit shy of. I remember having my children made me feel confident and outgoing (a bit like a shield) whereas having a SN child makes you feel vulnerable - I think this is also what you are feeling. I'm sure that having me with her helps, if anyone ever said a word to her believe me I'd rip their head off! I'm expecting a few comments when he gets his disabled badge as lots of mums have had hassle then!
    We are in Yorkshire so can't be of much help to you, but you are not alone in your feelings and there is always help and support. If you get Portage ask if they have a group, I will ask our Portage lady if there is a group here, it would be lovely to meet other mums in a social setting. We meet them at hydrotherapy but there is nowhere to go after.
    There will be good days and most of them will be good, which is why the bad ones are so horrible. When I get down I go and spend my money on baby clothes, toys anything - I even bought a new car (bit mad) but it seems to relieve the anxiety, though my bank balance is not as healthy! I NEEDED a new car so I don't care!
    Try to find mums locally who you can make friends with, Mumsnet and Netmums may be able to find like minded mums in your area, they both have SN sites and I often see requests for local area groups there.
    I think there are so many mums like yourself and my daughter anxious about meeting mums in similar situations, it just seems to go with the territory, but don't ever feel alone, even if its just on internet, there are many people to help.
    Good Luck and take care, your daughter looks an absolute poppet!
  • panther
    panther Community member Posts: 251 Courageous
    Hi Charlotte
    Sorry haven't been on here for a few days pc was broken but I'm now back online. And I was also feeling a bit too negative about it all myself and would of probably been no help at all. Even at my age having had cp as long as I have it still gets to you sometimes. Good to hear that you that you were able to walk pass the people that called Ellie names with your head held high well done.
    It sounds like you had a really good week like you say they happen occassionally. I guess if you come from a care background it is even harder to hear things said about Ellie. I remember when I moved into my own flat and was walking down to the shops I was really shocked because i had people coming up to me and asking "if i was one of those care in the community cases because we don't want people like that living round here!!" Another woman as i was carrying some shopping came out with "oh your arms work you're not that decapacitated after all!!" Safe to say i now avoid her if i see her out and about.
    But over time i've won them round i still can't say i have many friends and as it's already been said in this post you tend to loose friends I've certainly found that as I've got older and i haven't been able to do as much as before.But it can now take me over an hour to wheel down to the supermarket which is just at the bottom of my road because so many people stop and speak to me partly i guess because i set up a local neighbourhood watch group when i had to stop work so most local people in my neighbourhood either know me by name or know me as the young girl in the wheelchair. There's lots of people that talk to me and my partner will say who's that and i'm like no idea and he's like but they know you by name it's yeah i know i know them by sight but i don't know who they are but they always talk to me.
    I also now do voluntary work with my local police station so that has also got me known around the town and i've found over time espacially with the younger people or teenagers if you're polite to them they do respect you in the end I've often had some of the most unlikely looking teenagers stop and ask me if i need any help.
    So hang on in there you do toughen up in the end and are able to walk down the road with a smile on your face even if sometimes that smile is plastic and you feel rubbish inside.
    Good to see we've got some other people in this chat now i hope some of what i've said helps you both as well.
    Take care all, speak soon Helen xx
  • charlnellie
    charlnellie Community member Posts: 12 Listener
    Hello Kate!

    How are you? thank you for your reply, it also makes sense, I find it difficult to mke conversation or make friends with anybody new, it's quite daunting, Although at one point you wouldn't have been able to shut me up! lol. Ellie is having her Cochlear implant on Friday 25th June......SOOOO excited!!! It will be much easier, even if she can't talk, she will be able to understand us eventually.

    We had amazing fun today, It was my eldest daughters seventh birthday and we went to a huge play centre, Ellie got a bit frustrated as she couldn't do anything or run about with the other children, so I got to the top of the slide with Ellie under my arm, and off we went! she thought it was fabulous, she even giggled, which is so rare! For the first time in ages I actually felt as though I'd helped Ellie achieve some thing.

    Ellie may look cute on her photograph, but with all her limitations, she is rapidly becoming a little madam, the staff at the childrens ward call the the queen of manipulation! Lol, they all love her though, It sounds daft, but they're the closest things we have to friends.

    I have also just bought a new car, (well not new, its ancient).....P reg, but it gets us where we need to be, usually the hospital lol.

    I'm going to have another look round at child groups etc, I do occasionally go to the deaf pre school group, but it's still not quite the same.

    Good news is that we're now on a waiting list for a sleep system and a buggy Ellie can actually sit in without looking VERY uncomfortable.....We have given up with strollers, I just carry her, otherwise it's too traumatic for both of us!

    I think I can safely say today has been a good day...You need these to keep up morel some times (not sure if that's spelt right).....Speak soon hopefully,

    Take care, Charlotte, And ofcourse, Ellie x x x
  • charlnellie
    charlnellie Community member Posts: 12 Listener
    P.S Does anyone know anything about hair loss? Ellie has begun to lose clumps of her beautiful blonde hair, and I'm quite concerned as she doesn't have much to lose, It isn't just on one side, It's all over, even on the side she never lays on.

    Thank you!

    Charl x x x
  • renacahill
    renacahill Community member Posts: 145 Courageous

    Today is 25th June and I hope that Ellies operation went well and she is recovering well. I'm sure it will be a wonderful leap forward for you both and lots of Elli's frustration will ease as she discovers sounds and communication. Its amazing how quickly they pick up words and meanings. My DGS understands so much even though everything is doggie or Iggle! No, he does have a few more words but most of his energy is chanelled into movement control.
    Brilliant news regarding the sleep system and the new buggy. Our Elli has a normal buggy but tends to arch back and saccral sit but he's not in it that much. We wont get a special buggy unless its really nec as it takes funds away from people that need it more, ditto with the sleep system. He doesnt need one for posture etc. its just that he wont sleep on his own!!
    Will Ellie always need oxygen? That in itself must be so restricting, can't imagine how difficult all that medical stuff is as well as the CP. Hopefully that will improve with time.
    With your other daughter I'm sure you will find the ability to ignore the stares, there will come a day when she says Ellie is my special sister and I will be her best friend - children don't have the embarrassment factor like we do and just accept it all. I'm so glad you are going out, we don't like to go to soft play areas etc and only gaze at the kiddie playground. To look at Elli there is nothing to see, its only when he moves - or doesn't if you see what I mean! I know he will get stared at and my daughter and I are not up to it yet - mega protective I know!!

    Hope you have lots of good days in the future and the c. implant goes well, fingers X for you both
    Best wishes
  • Hymerkar
    Hymerkar Community member Posts: 63 Courageous
    Hi Charlotte, I havent posted a comment on this thread, but have been following it closely. I, like Helen, am an adult, now 48yrs and was born with CP. I can only back up everything Helen has already said, and add that I am also here if ever you need to ask anything, we will answer you honestly from our side of the fence.

    I hope that by now, 15th July, Ellie is well on the road to recovery from her opp and look forward to hearing the results.

    Love Karen XX
  • charlnellie
    charlnellie Community member Posts: 12 Listener
    Hi All!

    I'm sorry I haven't been in touch lately, Thank you all so much for the lovely messages about Ellies' operation.

    Unfortunately Ellie had been struck down with Pneumonia 24 hours before she was scheduled for surgery, I'm only just coming to terms with her impeccable time to fall ill, (vintage Ellie) lol, But she is now back home on the road to recovery and her cochlear surgery is rescheduled for the fourth of August, So, Once again we are house bound to ensure she doesn't become ill again!

    Let's hope that the second time is a charm!

    Thank you for your message Karen, I finally asked the physio for a more detailed description of Ellies' form of CP, and she came up with a spastic quadriplegic presentation, but a dystonic (i think)? approach.

    After she said this, she continued to say, Ellie is very bright but will have very big, involuntary movements that will form patterns, (which will explain the fact that when Ellie turns her head to the right, her left arm flicks back and gets stuck), But being so clever she will surprise us.

    By the time she had finished I wished I hadn't asked and she went quiet as I was welling up, Do you think it is better to know all the clinical stuff or not? As I find it a lot to take in, but have the unexplainable need to know, So far I have been taking a day by day approach.

    What would you do?

    Hope to chat soon,

    Best wishes, Charlotte, and as always, Ellie! xxx

  • panther
    panther Community member Posts: 251 Courageous
    Hi Charlotte
    I'm just catching up on here sorry to hear that Ellie became ill just before her surgery fingers crossed for the 4th August will be thinking of you.
    As for your question on is it better to know all the clinical stuff I guess if you know the full clinical side of things it gives you more ammunition to fight for what you feel Ellie needs as she gets older etc and if you wanted to try and understand it better you could always ask the physio to explain it to you in simple terms or as I used to do well that's the medical side of things now can I have it in simple idiot proof language so I can understand it!! Or just ask questions on here I'm sure there's people on here that could help explain most things.
    But I do understand hearing the full extend of the medical side of things can be scarey and make you feel that you can't cope with it all so it ends up being a should I or shouldn't I question. But I'd say the more you know the better you can help Ellie and sometimes a day by day approach is the right way to go I've discovered that as I've got older many times I've changed plans because there's no way I'd get them done on the day I wanted as it's such a bad day. I'd say especially as you get older it's one of the problems of having cp you more or less live life from day to day it's certainly made me slow down more!!
    Take care love to you and Ellie. Helen xx
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