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Why I hate filling in forms for Enfys!

5th April 2018

Raising children with additional needs is often a hair-raising task with many, many challenges.  From the day-to-day living right through to the boring, mundane application forms. 

I’ve had to fill in Enfys’ nursery application recently and how hard it was.  It left me feeling more than a little annoyed and frustrated.  In fact, it made me realise that, for the first time, Enfys’ differences will cause her a problem.  Not that I think that’s actually the case, but that’s how I feel about it.  There is so much more to consider.

Why did I hate filling in Enfys’ nursery application?

Three lines?  Really?

The application form had this much space:

 

 

To fill in Enfys’ medical history.  3 lines.  3 blinking lines to detail all of Enfys’ medical information.  To start with she has Di George Syndrome, a compromised immune system, global development delay, hypermobility.  That’s without going into the finer details of her condition and what it means.  She has no sense of fear, danger or safety.  There’s so much from the medical side to the social side.

One size most certainly doesn’t fit all

A lot of the medical and development information has simple check boxes for yes and no.  There’s no opportunity to explain what’s going on but there’s also no opportunity to say it is still early for bladder control. 

It may well be that she does have awareness by September but right now she doesn’t seem to have a clue (and finds it rather amusing to sit and play if she does have a wee while her nappy is off).

There’s so little awareness of her condition

This is a big one.  I mean, I don’t expect everyone to know exactly what it is but I am fully aware that not many people have heard of Di George Syndrome – I certainly hadn’t until Enfys was diagnosed.  It is this that makes filling in forms so difficult.  I want to provide enough information without overloading it.  I ended up printing off a copy of the 22q Consensus Document from MaxAppeal and handing it to the school,  Not sure how much they appreciated all 63 pages though.  Haha!

This week is not the same as next week will be

With 22q, things can crop up unexpectedly.  They can deteriorate rapidly or massive developmental leaps can be made in a short time.  I go into any form automatically thinking about our worst times.  Times when Enfys goes from a well child to being hit with some sort of bug in a matter of hours.  Times when she really has no idea of the danger she’s putting herself in.  It’s not good having to think negatively about your child’s life.

With each day Enfys grows up

Filling in more forms means that Enfys is getting older.  School applications means that she is reaching school age.  It reminds me that she will not be the cute and sweet toddler she currently is.  She will be cute and sweet still, but she will be older… more independent.  And to be frank, that thought is a little more than scary.

Filling in application forms is a bit of a pain at the best of times but I really hate filling in forms for my special child. 

17 Comments

  • Reply
    Jordanne | Thelifeofaglasgowgirl
    14th April 2018 at 7:53 pm

    One size most certainly doesn’t fit all and I don’t think they should have a tiny little space, making the forms a little more manageable wouldn’t take much especially to allow parents to correctly explain about their little ones. Well done on just printing everything off though, that’s a good idea and I hope the school take everything into consideration for your little one.

  • Reply
    Katie
    13th April 2018 at 7:58 am

    That must be so difficult, to surmise such a complex condition into such a small space. I hope they understand and deal with her condition well come September!

    Katie xoxo

    • Reply
      Beth Davidson
      13th April 2018 at 2:31 pm

      It is difficult. It takes so much more than a few lines to explain Enfys. She is truly unique, I’ll give her that much. Haha!

  • Reply
    Anosa
    12th April 2018 at 9:23 am

    Awww bless i can only imagine, you want ro ensure they have the right information and can support adquately nothing wrong with that

    • Reply
      Beth Davidson
      13th April 2018 at 2:34 pm

      Yes, exactly. We’re lucky, though, because her paediatrician wants to hold a multi-department meeting including the school before she starts, so that should hopefully clear up a lot of concerns and worries.

  • Reply
    CHLOE CILIBERTO
    11th April 2018 at 6:38 pm

    Oh no that must be so stressful. I have to admit I’ve never heard of it either until I read this post, so it’s so important you have that extra space to break it down and fill them in properly. x

    • Reply
      Beth Davidson
      13th April 2018 at 2:35 pm

      It is. 22q is not a well known condition and it’s something I’d never heard of myself. Luckily, though, I’m able to raise awareness by blogging about it.

  • Reply
    Kaz | Ickle Pickles Life and Travels
    11th April 2018 at 4:52 pm

    Oh I hate filling in forms – they never have enough room, and I don’t have anything ‘extra’ to fill in wither. Kaz

    • Reply
      Beth Davidson
      13th April 2018 at 2:36 pm

      Forms are horrible in general, I agree. It’s also so hard to know what skills your child will develop in a couple of months.

  • Reply
    Hannah
    11th April 2018 at 8:22 am

    I hate having to summarise my child in a few lines on paper- it’s not possible whether they have additional needs or not. I’m so in awe of your calmness in managing it all. She’s very lucky to have such a good mummy.

    • Reply
      Beth Davidson
      13th April 2018 at 2:36 pm

      Thank you, although, I’m the lucky one to have her. She’s taught me so much in the last 2.5 years.

  • Reply
    Cath - BattleMum
    10th April 2018 at 6:54 pm

    That’s a ridiculously small space in which to inform the school of everything they need to know and be aware of. It’s a classic example of the one-size-fits-all mentality. I think you did the right thing in printing off the info they need to read. I just hope they do!

    • Reply
      Beth Davidson
      13th April 2018 at 2:42 pm

      I’m sure they will… our school doesn’t have a great reputation with additional needs at the moment so they’re looking to improve. I’ll give them the experience they need. Haha!

  • Reply
    Sophie's Nursery
    10th April 2018 at 2:28 pm

    This must be so frustrating – I can’t believe the amount of space they gave you to try & fit things in! x

    • Reply
      Beth Davidson
      13th April 2018 at 2:43 pm

      It is. To be honest it was far easier just to print out the consensus document. 🙂

  • Reply
    Amy - All about a Mummy
    10th April 2018 at 11:17 am

    It must be so frustrating. I find this with medical forms as my youngest has an extensive medical history surrounding asthma. So not as impactful as you but I feel your stress!

    • Reply
      Beth Davidson
      13th April 2018 at 2:45 pm

      It is incredibly frustrating. Health needs should be given more prominence on forms.

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