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Disabled son feeling left out

dylansdaddylansdad Member Posts: 5
edited June 2014 in Parents and carers
Hello, my son is now 2 and a half and was diagnosed with CP at around 5 months, I have been dealing with things well but lately seem to have been struggling a bit more. I can only think that maybe it is because his diasbillity is more apparent than when he was a baby and I am now starting to wonder what he is missing out on that other children his age are doing. Dylan is a very clever little boy but he is behind in his development physically which I think he finds frustrating at times. He is always smiling and laughing and that is why i feel really selfish that I am a bit down in the dumps.

I was wondering if there were any other parents who have experienced this and could offer any advice or words of wisdom that can help me get out of this little rut I am in, as it is not fair on him for me to be like this.

Hope to hear back from anyone out there.

Thanks

Replies

  • hilsflynnhilsflynn Member Posts: 24
    Hi dylansdad,
    I know what you mean (to a certain extent). My 3 year old is happier than any other 3 year old I know but sometimes he looks wistfully at play equipment that it is just impossible for us to take him on, or if we do struggle it is just all too brief and not what he wants. A couple of weeks ago, his home to school book said that he was sad that he couldn't play on the bikes in the outside area at nursery - which gave me a brief moment of despair, because I know that there is very little I can do to solve that, and it that sort of thing is likely to be the case on many future occasions.

    But the reason I say "to a certain extent" is, I will not let it bother me - because on the whole it doesn't bother him and I would like it to stay that way. So we make sure we maximise all the opportunities that he does have available. How many 3 year olds can say they go horse riding every week? Harry does at his local RDA centre - and as well as being lots of fun, it is fantastic therapy and more affordable than normal horse riding lessons at
  • mafalamafala Member Posts: 72 Listener
    Hi Dylan's dad,

    I think you've hit the nail on the head yourself when you say that you've been struggling because Dylan's disability is more apparent. I know this feeling so well. Your mind knows that it's not helpful feeling upset for the things he can't do, but your heart feels really sad for all the things that he could have done and might never be able to do. It's normal to feel like this and it's really healthy that you know exactly why you're feeling like this. It means that you reflect and you understand your feelings. These are all good and positive things. We're only human and we love our children and wished that they didn't have to struggle. But try and accept how you feel and put that to one side. Think of all the things Dylan has achieved so far, however small. Think of the things you never thought he'd be able to do and that he managed to do. It really helps thinking of the things your child CAN do rather than think of all the thing they CAN'T do. I'm incredibly proud of my little boy who is 8. He is the most wonderful, brave, clever, amazing boy and I know in my heart that he will do great things regardless of his disability, because he is not his disability he is himself.

    All the best.
  • dylansdaddylansdad Member Posts: 5
    Hello,

    Thank you for your reply, like I said its just a bit of a rut I am in and your suggestions for the activities sound great. I have been getting info of Aiming Higher about activities that they run and have never fancied it as I have not felt comfortable with it myself but I think that i will get in touch with them and start strying some of the activities they run so we can get out and hav some fun.

    I usually take hime swimming once a week which we both really enjoy so more stuff like that sounds like a good little treat.

    Again thank you for taking your time to reply.

    Many Thanks

    Phil, Dylan's Dad x
  • dylansdaddylansdad Member Posts: 5
    Sorry I thought that it was a reply to just one person but it must jut go on to the bottom of the thread thingy, was going to reply to each of you.

    Thank you for all taking your time to reply it is a comfort to know that there are people out there who you can talk to when the chips are down.

    I make sure that me being down doesnt it affect how i am with Dylan but it probably does affect the activities I do and the places I go with him. I think I need to get out into different groups so that i can properly come to terms with being around others and like you said getting used to the stares, especially as i have a bit of a short temper with that. I am really proud of him he's, the coolest little boy in town with a great sense of humour and he is really coming on with his cognitive development.

    Thank you again I am feeling much better and have a bit of a plan lol, if anybody ever needs to talk I will be more than happy to return the favour.

    Cheers

    Phil Dylan's Dad x
  • charlnelliecharlnellie Member Posts: 12
    Hi Dylans Dad.

    I know how you feel, Ellie is 21 months and I have begun to start having the same emotional problems. It hurts because Ellie has a normal IQ but no physical ability etc, for example i took her to the park the other day, she wanted to join in with the other children, she understood what they were doing, which was having fun,I I felt awful having to leave, i also felt quite selfish because i left for my own reasons and not Ellies....It was me that couldn't bare to watch her miss out, it's my own emotions that got in the way of what should have been a really good day. Ellie also wears a cochlear implant as she is deaf aswel as having severe CP so we are used to the stares, not that it gets much easier, my eyes sting a bit when yo9u know people are whispering about your child.

    If you ever want to talk, I'm here,

    Charlotte, Ellies' mum.
  • Hi Dylanddad,

    Sorry to read your feeling a bit down at the minute. My husband suffers from agoraphobia and has been housebound for the last 2 years. I think we have just learnt to cope with it but sometimes it does become more apparent and only then do you start to look at your life.

    Take comfort in the fact that your son is very smiley this shows he is happy!

    It is very hard to get yourself out of these feelings but once they have un the course you will be back to normal again.

    My husband has therapy for his agoraphobia and depression and we have recently developed a forum for people to chat to others. You are more than welcome to come and chat and sound f if you need to. Its good to talk sometimes.

    Calsie
    www.houseboundforums.com
  • charlnelliecharlnellie Member Posts: 12
    Hi again Phil (Dylans dad)

    Is your plan any good? lol.....Have you tried going to hydrotherapy groups etc? depending on where you live depends on the activities on offer for you and Dylan, We live in Macclesfield, and Ellie seems to be one of very few CP suffers (child sufferers any how).....I felt a bit awkward at first but now, Ellie and I really fit in and have made ourselves a comfortable happy routine from what resources we have. Don't get me wrong, we do try normal things, but her potential doesnt shine through at the regular activities. We generally stick to the opportunity group, hydro, physio, JJ's light and sensory room, baby massage etc....do you have a children centre near you? It's so much easier to digest the feelings you have when you have a friend in the same position, or at least vaguely similar! I have one friend whom I met in special care, and now we have such a strong bond, I still have a couple of friends from my 'pre ellie' days, but most of them phased out to be honest, I think its due to the new demands on my time, and the fact i'm like any proud parent always waffling on about my baby girl! #hope you and Dillan are well! speak soon, charlotte x x x
  • dylansdaddylansdad Member Posts: 5
    Hello Charlotte,

    Hope all is well, my plan is to start going to more activities that are put on by Aiming High and a couple of other places that are doing specialist activities. Dylan goes to the hydro pool for his physio once a week but it is whilst I am in work so I do not get to go.

    We do have a local centre but the problem is that they do not actually run any groups for disabled children and their dads. I used to go to a Saturday morning group but I felt really out of place as the dads would send their children off to play and then have a chat whilst i would stay and play with Dylan. I Do not think they really knew how to approach me which is understandable. All of the disabled activities at the local swimming baths are also in the day whilst I am at work so I take him after school which is great but the pool is not heated aswell and I do not get to meet people in a similar situation. I have a large group of friends and alot of family who are always there for me but none in a similar position.

    Cheers for takin your time to reply, hope you an Ellie are well!

    p.s glad your finally gonna get Ellie's MRI reviewed!

    Ta

    Phil
  • melnswmelnsw Member Posts: 2
    Hi there,

    I am hoping someone can help me on here as I am not quite sure of where else to go or what sited to check.
    My friend has a lovely 8 year old boy who has CP. He has just turned 8 and has just been told by the school he attends that his mental age is 4. He has no obvious physical disablities, but mentally he is slower and will never be able to hold a 'normal' job in the future, which i'm sure alot of people with CP wont.
    He goes to a normal school here in Dublin and just isn't getting the care and education he needs, and alot of it is down to the education system and lack of resources in this country. And to be honest, they are shocking.
    She has been told he will need to go to a special school for kids with various disabilities but at present there is a very long waiting list and was told by the principal that there are no other kids with CP there and they wouldnt know how to deal with his disability. This was the last straw for her and she has been a mess ever since.
    The school he attends had a Special Needs teacher for him but she left, and also wasnt told this. She only found out 3 weeks later when her son said something about her not being there, and when she called the school, their response was 'oh sorry, did noone tell you'? This is the usual over here and along with thousands of other people trying to get specail needs education, nothing is done and it falls on deaf ears.
    She is wanting to relocate to the UK for the sake of her son and I would love it if anyone had any information on who to contact regarding schooling, housing, where the best place to go to, live and costs etc would be.

    Thank you so much in advance.

    mel
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