November

Since my last blog post I’ve questioned continuing the Journal.

A lot has happened that has made me question my choices in this Process.

Before I continue, I want to make it clear that I know a lot of what I’m about to say will resonate with parents of “normal” children, a lot in all of this sits completely parallel with “normal” parenting, just perhaps slightly different scenarios. 

So please don’t think I’m not aware of it, because I am. And I don’t take anything away from the daily struggles of  “being a parent”. It’s a tough gig.

Iv spent the last few months up to my eyeballs in EHCP drafts.

It’s the official document that means by law, once its been okayed, Ns education and School has to abide by it.

It’s basically to make sure she gets the support and care that she needs specific to her disabilities.

Once its created and iv okayed it, it gets sent to the school id like her to go to and they then decide whether they think they can provide her with what she needs to flourish and learn.

As I’ve mentioned in previous Blogs N is currently at the most wonderful Nursery with the most incredible teacher and the greatest friends a girl to ask for. She loves it.

She has a fabulous one on one TA (which we privately found).  She has been a life changing addition.

It has made her time at nursery even more incredible and has enabled her to be as involved in all the activities and learning as all her friends.

This year, we have truly nailed it.

Now just like every other parent out there, I’ve wanted N to be able to choose the school she goes too. Iv said it before, if N wants to continue at the school her nursery is associated with, as all her friends are, then she should be able too.  

But she can’t.

She’s not allowed to go.

So in true Al Fashion….

What. The. Fuck.

I had to go and sit in a meeting and hear some hard truths.

And I’m going to be super honest.

My heart is still hurting & my soul aches from the entire thing.

Firstly, it’s important to say that the professionals in the meeting were nothing but sensitive and kind. They were just being honest. And I truly respect them for being that way.  

But of course that still doesn’t stop me feeling broken.

It’s a complex place to sit.

I’m heartbroken and angry for N. she doesn’t get to travel her school years with her beautiful friends who she has spent the last three years with. And she has had her choices taken away from her.

And it is not her Fault.

This Girl deserves the world.

But there are several sides to this.

Our education system in the UK is pretty inadequate.

Compared to other countries we are severely behind in our inclusiveness and also in our understanding and ability to adapt.

That’s not a dig. Our country is a complex one in dire need of some change. But that’s not what I’m here to throw opinion about.

I’m just disappointed beyond belief.

We all have these ideals of how parenting is going to go, and then whilst we are in the midst of being a parent we make decisions based on what we think will be best for our children.

We want them to be happy, strong, educated individuals with the tools to set them up for life. So that they can have choices, be employable; feel confident in who they are and what they stand for.

Life Choices.

So here is a huge pill for me to swallow.

My daughter doesn’t get those same life choices.

I know, it’s a hugely negative thought isn’t it? But it’s a harsh fact of this reality.

Now this is not me saying she’s going to have some shitty life. I’m sure as hell never going to let that happen.

However N’s freedom of choice has been taken away from her, by Rett Syndrome, and the truth is I thought I could stop it happening.

I’m aware this has been a rather largely negative and somewhat angry blog so far, I’m sorry.

So what’s next?

To be honest, I’m still unsure.

She has the rest of this year at her nursery before she has to move. And where I move her to I am still completely undecided.  But I’m not rushing into anything.

She needs to be in a school that will embrace her for everything she is, one that will see past her physical difficulties.

Her nursery has done that and the children and teachers there are going to be impossible to replace. Iv had to realize that not everyone views or will embrace her challenges like they have.

Iv realized that in my bid to give Niamh the best most “normal” life I possibly can, I have avoided accepting the severity and realness of her disabilities. It has become our “norm” and in that I have ignored they realities of what that means.

So I think its time to take stock. Re-evaluate; work out what I’m doing that is truly in her best interests and not for my own wishes.

Iv got to swallow that goddamn pill.