A child with additional needs must have an EHCP to get appropriate support while in education

However, getting one can be complex, lengthy and costly. Here a parent describes the ‘journey’. You are the captain.

Having a child is the start of a journey. It is a never ending journey. You board the boat when they are born and you just have to keep paddling.

For a family who are dealing with services and local authorities, Education Welfare Officers, teachers, professionals, it’s like being on the boat and going through constant rapids and having random people on shore shouting at you, giving you advice. Sometimes it’s helpful, sometimes it makes it harder to navigate. Sometimes you feel like the boat has hit land and you get stuck, but you are still on the journey and the boat will move again.

The thing is, once you realise this journey has no end, no finish line, it can make the journey easier to bear, because you slow down and start to find small wins along the way.

When I first became a lone parent I felt like my co-pilot had jumped ship. I didn’t feel like I could cope, I begged and prayed for someone new to join me. I became low and angry. But I just kept paddling and one day I realised how amazingly strong I had now become. This was my life and with the strength I had built I could now start to see some lightening of my load. What felt overwhelming now felt exciting.

Sometimes on our journeys the water will be flat. Sometimes helpful people ashore throw us support items, sometimes they might even get on board and help paddle … but we must always be captain of our child’s journey.

On this boat there will be beautiful views and fun and laughter. Yes, when the rapids are high we can’t focus on those, but we have to try to remember they are there and we will have them again once the water is calmer.

Many parents I support are desperate for an end goal. They hope that getting the Education, Health and Care Plan (EHCP) will be the end of it all. This horrible journey of stress, fear, conflict and pain will end. But they are disappointed, because they are still on the boat, just with extra support, but still paddling with all their might.

The journey gets easier with an EHCP but it’s not going to mean there are no rapids or travel sickness. What will happen is that the 0-25 team will shout to you once a year from the shore to ask how it’s all going and help with improvements. You can also shout to them anytime you want too … so it will help. But you are still on the journey.

You can also call upon social care support for Direct Payments so someone can get on board and be with your child while you just keep on paddling, but they won’t be the captain. That’s you.

Think about what a captain needs. They need a clear head, a positive focus and the determination to never ever give up.

All I’m saying is: We are the captains and we’ve got this!

For more information visit the SEND website.

*Paid membership of SEND gives a parent twenty-four hour confidential email support to answer any questions they have, 365 days a year. It includes access to membership areas with templates and video guides to take you through every step of the journey.

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