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.