Friday 14 May 2021

Why Is It All Such A Battle...?

 It's been a fair while since I sat down and started to write, and actually, this wasn't my intention when I pulled out the laptop this morning, but, as I've been sat - actually doing what I'm supposed to be doing now - I just became angrier and angrier and really needed a place to vent.

And so here I am throwing the question around, "Why is everything such a battle?"

I'm not sure how much of this journey I'll share within these pages (probably every detail if I'm honest, we all know what a life over-sharer I am) but for now, remember my little Baby Baker Friday posts?  Those weekly things I started doing way before little "Baby Baker" was born?

Well, "Baby Baker" will be six this year - I know, tell me about it, where on earth does time go - and what an amazing, wild ride of a six years it has been...

And everything wild and wonderful which has happened over the past six years has lead us right up to this point, to this week - to Wednesday 12th May, 2021 to be exact - the day my "Baby Baker", little Whirlwind Willow, was diagnosed with having an Autism Spectrum Disorder.

But what a bloody battle of a six year's it has been - a battle to be listened to; a battle to be heard; a battle to be believed even; a battle getting through each day sometimes.

And the battling certainly hasn't stopped, and I don't think it will do anytime soon either if I'm honest.

But all I am trying to do - with my head constantly buzzing and this god-damn-headache which just wont shift, constantly making me aware that I have so much to do; have so many things I need to remember; so many places I need to ring; sat with scribbled checklists piled up next to me ensuring I really don't forget anything important - is to get the help my little Whirlwind is so desperately going to need.

In September 2021 - just four short months away - Willow will start Year One at school. 

It's something she has already started to worry about, "Which door will I go in?", "Where will I sit?", so I know it's on her mind, this huge, big change, and I know things like this make her unbelievably anxious.

Now I get it, things may progress differently to how they have been doing so far now that there is a formal diagnosis in the mix, school obviously haven't had any information yet (besides a quick phone call from myself) regarding it all - I mean I haven't even seen the report yet.

I'm hopeful anyway, but up until now, mainly because Willow masks her struggles a lot at school, there has been "no need" seen for Willow to have an EHCP (so that school could be funded for her to have a one-to-one support even for a short period of the day).

Now I'm not slating the school, they can only work with the things they see but today I just feel so...maybe frustrated is the best word...that again, there is this huge battle in front of me.

I mean I know my own child and I know that she just will not cope with the next stage of her school life without more help.

 I know just how the demands of moving up through the school will leave her feeling, of having to leave her beloved class teacher and classroom TA and move on to totally new and (so far) totally unfamiliar adults, of having next to no "free play" time and of being expected to spend 90% of her day sat at a table, working.

It's going to consume every second of her time, in school, at home, at the weekends - full on take over everything.

Which brings us back to the reason I opened my computer this morning after such a long time away - I'm going to start the process of applying for an EHCP for her myself.

I'm going to gather the evidence, I'm going to complete the forms, I'm going to put my own case together...and then no doubt I'm going to end up going to a panel meeting to fight my case.

A constant battle.

Every, Single. Way. You. Turn.

But why is it like this?

Who would go to these lengths and make these situations up if they really weren't needed?

This buzzing in my head is showing me I already have enough going on up there without adding to it unnecessarily.

So why make people fight so god damn hard all of the time?

It's just frustrating - but it's something I will do and will continue to do - no matter how loud the head-buzzing becomes - because there is a five year old, ginger-haired Whirlwind out there who is depending on me to do the very best I can for her.

And that I will do.

I just wish sometimes it all were a little bit less of a fight...


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