✨ Why have I taken time off? ✨
Not because of work. Work keeps me going. Honestly, it keeps me sane. Being in the café, baking, talking to people — it gives me a rhythm, a purpose, something that gets me through the day. Baking gives me joy,
It’s the SEN parenting side of life that has left me completely exhausted. It also gives me joy…but right now, exhaustion is winning.
Boyo still has no education. None. We’re now over two years into this. Two years of him being out of education. Two years of us juggling 24/7 care without a single break. And just when I thought we might finally be moving forward, another email lands. Another request for “more evidence, more clarification, more questions.”
As if the mountain of reports, assessments, and professional input we already have isn’t enough. As if his needs aren’t already crystal clear.
And because there is still no education lined up, this week we lose Child Benefit. Now, Child Benefit is not a fortune. It isn’t life-changing money. But £20 a week helps. It’s a tiny drop in the ocean, but when you’re juggling life, work, and caring for a complex child, every drop counts. It covers the little extras, the unexpected costs, the endless things that pile up when you’re raising a disabled child. Losing it isn’t just about money. It’s about being reminded, once again, that we don’t fit into the neat little boxes this system has built.
I am tired. Bone-tired.
Two years of 24/7 caring without education time to have even the smallest breather. No respite because he’s considered “too complex” for commissioned services. And here’s the reality — no respite is actually better than bad respite. We know. We’ve had bad respite before. And when you’ve seen your child harmed by a system that is meant to protect them, you stop trusting it.
But when does it stop?
When will children like Boyo, the ones with the most complex needs, get the basic things that every other child takes for granted?
When will carers and parents actually be factored into the services that are supposed to support families?
He’s 16. Most 16 years old are living a fun filled life, maybe have a part time job. They go out with friends, go to the gym, the cinema. They live a life.
Boyo needs 24/7 care. 24/7 eyes on him. He cant be unsupervised because he doesnt understand danger. He can be a danger to himself. He cant cross a road without an adult supporting him. He cant make his own food, he cant wash himself. Basic basic things. He needs help with 24/7. So whist other families of children the same age can basically get on with life, occasionally checking in with their children….we have a 5year old in the body of a man. …… let that sink in. Our caring responsibilities haven’t changed. He’s 16, but needs the same care as a 4-5 year old, but he’s bigger, taller and stronger.
And right now we have no support. And we haven’t had support for almost 2 years. And this is not uncommon.
Right now, we are not supported. Nobody asks what we need. And on the rare occasion they do, the answer is always the same: “There’s nothing available.” Services in theory look like they are geared around the child. In practice, they only work if you tick a neat, majority box.
And if you don’t tick that box? You fall straight through the cracks.
Most people assume that because our son is so complex, we must get loads of support. We don’t. And then, because we don’t get support, people assume he mustn’t actually be complex. He is. His evidence pile is enormous. It could fill a filing cabinet. But that doesn’t matter, because services for children like him simply do not exist.
So we are left to cope. Left to keep fighting. Left to be let down, day after day, year after year. Until families like mine break. And when we finally do? The only option they offer is residential care.
That’s the brutal truth. Not support at home. Not meaningful respite. Not education. Residential care.
And this is why I am tired.
Not because of the work I love. But because I am raising a complex child in a system that seems determined to fail him — and in failing him, fails us too.
💔 Our children deserve better. Families deserve better. Carers deserve better.
SEND reform is needed. But let’s be clear, reform of the SEN system only works if it puts more money into a broken system. Not simply moving pots of money around. Not cutting or reshaping what already isn’t working. More. Investment. Funding. Real resources. Looking at the long term. Investment in children early on save money in the long run. Its not a quick fix!
Because until that happens, nothing changes. And families like mine will keep being crushed by a system that was supposed to protect us.