Parents, carers and disabled parents
If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.

Daughter is about to start school - anxious she will be 'different'

kirstylucyLkirstylucyL Member Posts: 2 Listener
My daughter Lucy is 5 and about to start school. She was 12 weeks early at birth and has cerebral palsy. I'm interested to hear how other parents feel when they're child has extra needs and your about to let them go. This is not my first baby, she has two big brothers, but I'm feeling anxious she will be 'differen' x


  • Liam_AlumniLiam_Alumni Scope alumni Posts: 1,113 Pioneering
    Hi @kirstylucyL,

    Welcome to Scope's online community! It's great to have you here.

    I've moved your post into our Parents and Carers category, where other members of our community may be able to advise - I'm sure other users have had similar experiences that they'll be able to share.

    You may also find our dedicated Cerebral Palsy category of particular interest too.

    I hope this helps. If you have any other questions, then please do get in touch!
  • ZeezeeZeezee Member Posts: 80 Pioneering
    Hi kirstylucyl,
    I know your anxiety. My daughter is starting nursery at a mainstream school in September, she will be 3.5 and has quadriplegic CP. She is obviously different as she can't sit unaided and if she gets her wheelchair in time will be attending in her wheelchair, the thing I worry about the most is the other children finding out she is still in nappies and can only drink from a bottle which she can't give herself, because kids can be so cruel.
    All that being said, she is amazingly bright she is reading level 1 & 2 books and is stubborn as a mule and very feisty. So we have to weigh up the benefits and pitfalls of choosing a mainstream school where they are physically different from their peers and hope that the strength our very special children show every day just to do what other kids take for granted can be expressed in their attitudes and personalities when dealing with the challenges from other children, parents and themselves.
    It breaks my heart watching her being left out while playing in a room full of children when she desperately wants to join in. I am hoping that with her support worker and her big mouth she learns her own way of dealing with that. 
    All we can do is be there to advise them and comfort them when needed, fight for the correct EHCP so they have everything possible they need to fully engage at school and make sure we have the best relationship with their schools.
    I hope your daughter enjoys school and you don't stress too much xx
  • [Deleted User][Deleted User] Posts: 740 Listener
    The user and all related content has been deleted.
  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,729 Disability Gamechanger
    HI @kirstylucyL it is always scary when our kids are taking those first steps into the unknown!!

    How are the school dealing with it? Have they offered much support? We have an advisor section for Educational Health and Care Plans if you have any specific questions on this that they could help you with.
    Senior online community officer
  • forgoodnesssakeforgoodnesssake Member Posts: 367 Pioneering
    HI, my son is now 19 with athetoid CP, wheelchair, no speech and a bit dribbly!  he has always been at mainstream and is actually just waiting for A level results then off to Uni!  However I do remember when he started out local infant school and the one thing that i wish I had been more insistent on was getting us, or someone from the CP society or whoever to actually do a little assembly about CP and what it is and how it can affect poeple and specifically how it affected my son. 
    The HT was nice enough but way out of her comfort zone and also very naive and so she just said "oh it'll be fine, children just accept things" and indeed there is an element of truth in that, but my experience is that children do accept things quite readily but they also want to ask questions, and if they are made to feel that they can;t actually mention an obvious disability then it becomes a taboo, with all that that entails.  The other big thing can be that whilst kids accept things and differences, their parents often don't or at least feel uncomfortable and transmit that to their children and then the seed of "disability discomfort" is sown.

    We had 2 interesting experiences when my son was about 5 or 6.  One was not at school but in a cafe, not in our home town.  A little boy stared at my son and then asked his mum in a loud voice "why is that boy in a wheel-barrow?"  Now it could have gone many ways but actually that mum was great.  She didn't "shush" her son, or rush out embarrassed, she simply said in a straightforward way "it's called a wheelchair and it;s because his legs don;t work very well" end of.  The little boy was satisfied with an explanation he could understand and there was no stigma at all.  Mum and I exchanged smiles and a little chuckle and I have never forgotten that.

    The other incident involved a (very rare) invitation back to another boy's house for tea.  I had to go too as my son cannot feed himself and it was clear to me even before this invite that mum was very uncomfortable but trying hard!  During tea the other boy was showing off a bit, nothing awful, but his mum said "A. will tell them at school what a monkey you are!"  and quick as a flash the boy replied "no he won't cos he can't talk!"  Now that was just a fact, - rather overlooking my son's use of AAC symbol board and communication aid, but nonetheless the boy was just saying it like it was.  However mum was mortified and immediatley marched him out of the room and possibly smacked his bum but certainly reduced him to tears.  So the tea was ruined and that boy had learned that you must never mention disability.  Needless to say there were no more invites and the mum kept out of my way after that!
    Such a shame because if it had happened at our house, or at least if she had not heard and immediatley intervened I would just have laughed and said "ah but he can SIGN monkey!" (which he could!) and the whole thing would have been very different.  Other child would not have been embarrassed and told off in front of us, he would have seen that it is OK to be honest about disability things AND he would have begun to realise that not being able to talk is not the same as not being able to communicate!

  • ZeezeeZeezee Member Posts: 80 Pioneering
    the assembly idea is brilliant. I am going to look into this because I noticed when I took Ziyal to the settling in sessions at her school the other children where treating my daughter like a baby, to the point that three children where all stroking her face saying aahh baba at the same time. I had to explain that she is the same age as them, but they continued and kept making a huge fuss every time she spoke until Ziyal just gave up trying to talk to them as they weren't having conversations with her.
    So I think an assembly where the children are encouraged at the end to ask questions would be invaluable.
  • [Deleted User][Deleted User] Posts: 740 Listener
    The user and all related content has been deleted.
  • forgoodnesssakeforgoodnesssake Member Posts: 367 Pioneering
    But the alternative is just letting all of them make assumptions about her...which will definitely result in her being treated differently if things are not explained.  Of course there will always be kids (and adults) who prey on weakness, but it is not all of them and many (in my experience) will learn to interact in a much more age appropriate way if they actually understand a bit more about why a child is like they are.  Danny it sounds as if you had a really tough time, which is awful.
  • kirstylucyLkirstylucyL Member Posts: 2 Listener
    Thankyou for all your positivity, Lucy is very excited about school and I will certainly be remembering your tips and advise as we go forward on her next chapter/adventure x
  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,729 Disability Gamechanger
    Hi @kirstylucyL how are you getting on? Have you made any decisions on this?
    Senior online community officer
Sign in or join us to comment.