The crushing weight of fighting for what should be a right

It's the start of the weekend.

But most importantly, the end of a week which has truly tested me in many ways, as a human, as a mother, as a coach and strategist.

I almost never feel this powerless. I am fixer, a problem solver, a proactive individual and professional who helps others get round tough corners, finding ways to push through.

But in the last 6 days:

• I witnessed 3 neurodivergent clients giving up the access-to-work support and adjustments the are entitled to, because the bureaucracy, the waits, and the barriers are just too big, too many, too complicated; because the Department for Work and Pensions (DWP) customer service representative are cryptic creatures who don't seem to understand the way the autistic brain works, and their process to claim ATW is designed to actively discourage anyone who has any form of processing disorder. Three adults who were making progress in their career, but will probably not be able to hold down a job without the support they need. And somewhere inside my head, a voice is shouting that this is also my fault - that I should be doing much more to change the system.

• I watched 2 of my friends having to fight their way through the health system to get basic doctors' appointments for children who have been physically unwell for over 6 months, but have been ignored until going to school has become impossible, their mental health deteriorated, the entire respective families have been affected, and the 2 mothers broke down - one in work and the other one at the chemist - luckily in front of 2 people who didn't judge and had the power to get them the appointment which their children should have been entitled to THIRTY weeks ago. These women are not the 'pretty little flower' kind - they are a senior manager and a serial entrepreneur who manage business, multiple children, husbands, pets, elderly parents. Women who stay hydrated ,exercise, are generally always ready to help others and stay on top of things, women who have their act together. They had to break down to get their children support. And it took A LOT for them to break - who's going to pick up the pieces now? Having spent the last 7 years advocating for SEND children and their families, spreading awareness of PDA/autism and trying to provide support to families in my free time, seeing things like these is such a defeat I don't even know what to do.

• I spent almost the whole of my free time fighting with the Access To Work customer service, which is sadly an appalling experience. No two people give the same answer, there seem to be no protocol in place to amend mistakes made by them, no one seems to have the power to make things right, event when they admit they've made a mistake. These interactions truly wipe me out, and I am left thinking how can someone with less resources, willpower, self-esteem and resistance to life could actually sustain something similar throughout a whole life - because this is what too many individuals I know have to cope with.

Now, I am absolutely sure both DWP and doctors are overwhelmed with requests, and many of them strive to provide a good service, but the state things are in is daunting, because it's next to impossible to navigate the system, and even the most determined, capable, fierce people give up, after a while. This process needs to change. The system needs a shake.

It's unthinkable that children (or adults) who need help to wait over 6 months - simply a NO.

It's anxiety-inducing for those receiving access to work coaching to see their coaches and trainers threatening to abandon them because of bills that take months to be paid.

It's scary for SEND mums to think that their children will have to go through this if they need any form of support to do their job.

It's not viable for the businesses providing the coaching for those who are entitled to Access to Work - and one of those businesses is mine. I decided to do this as one of the ways I can help the world become a better place, and of course because I hope that, when it's his turn, my son will find someone like me to support him in his career. But how can I keep doing this as a one-woman-micro-business who wants to be an effective mother, and strives to provide excellent, supportive service to her clients, when payments are constantly weeks and weeks late, dealing with the bureaucracy behind it is taking a major toll on my mental health, eating all my time, and no doctor will see me if I complain unless it's too late?

Tonight, I am at a loss as to whether everything I do as a professional, a mother and a volunteer is truly making a difference. Whether I am actually helping here, or only putting a patch on things. Whether such infinitesimal changes will really produce a visible shift within a decent time frame. I am wondering whether my mental sanity is worth this tiny, almost invisible difference, and asking myself whether my time and resources wouldn't be better exploited as an employee of some big organisation where I KNOW the collective work actually makes ground-shaking shifts happen.

On Monday things will be different. I'll wear my armoured crown and be ready to fight again. But tonight I truly am, if not broken, definitely chipped. And I am thinking of all those who don't have the support and resilience I have, and how can I change the way I work, as a human being and a professional, to make sure less and less people have to go through days like this.

Things have to change, and and this broken, head-strong crazy cat lady will be amongst those who make the shift happen, one way or another. Watch me.