Finding new (SEND parent shaped) feet

Finding new (SEND parent shaped) feet

This too shall pass…

A parenting mantra I learnt in the early newborn bundle shaped days. Every challenge was just a phase. You find your feet, again and again. Even the most smothering days of clingy round-the-clock feeding and pop-eyed nap refusal, that felt like they would go on forever in a Groundhog style loop, faded one by one into a comfortable routine.

It gets easier! I promise… well, not easier, it just gets different. You are different…

These words from a friend with older children were cold comfort in the early confuddlement, but she was right. Far beyond the newborn chaos, parenting my eldest now she is nine is still a challenge. But I am different. I found my feet.

Common knowledge has it that your second is a breeze.

You know what you’re doing second time round. It’s so much easier…

And that’s where my fellowship with mainstream parenting consciousness came skidding abruptly off the beaten path.

Sure, second time round I knew how to breastfeed, change a nappy, bath a baby. I knew how to operate a pram, wear a sling, get a baby to sleep, choose a weather appropriate baby outfit. I knew how to make it possible to have a shower at any given point in the day with a newborn in tow. And drink a cup of tea while it was still hot. All the stuff I had no idea how to do the first time around and that felt either terrifying or impossible the first few times.

But did I know how to keep this boy safe and alive and well? What was it I could see in him in those early newborn days that seemingly no-one else could?

It was 11 months before I attended my first SEND baby group. Before that I hid in the familiar, busied myself with revolving around my toddler, relieved but privately troubled that O was a placid and easy baby. I tried to ignore the words from the screen that told me to be fearful, even though I had sought them out myself through many a night of raking the far academic corners of the web for reasons why my baby was different.

I knew he was different even if no-one could tell me why. I wanted to protect him from the world until I could fix him. Physio, sensory therapy, developmental specialists, postural equipment, the latest neuro research from across the world. I would do whatever it took. Research and learn whatever I could. Work as hard as I had to in order to fix whatever was wrong.

But at that SEND playgroup, on a grey Tuesday afternoon in January, for the first time I felt like maybe I didn’t need to fix anything at all. My baby wasn’t broken and nor were our lives. In my first glimpse of this new world I found kindness and fun. And actually, it didn’t feel all that different after all.

If I could have stayed in that little SEND playgroup shaped bubble, I should think I’d have found my feet as a SEND parent much quicker than I did. But outside of those doors the world grew slowly more unfamiliar each day that passed.

I didn’t know where we belonged. This too wasn’t ‘passing’, it wasn’t ‘getting easier’ and I had no idea what I was doing at all.

We drifted.

And then we ran away to Cornwall, caught up in the excitement of new lives far away, in a place where we could find out feet again.

But even the heady hopes of a fresh start by the sea couldn’t shield us from the difficult path ahead.

The obvious challenges of SEND schooling, healthcare & social support aside, decisions about what to do with the house, what car to buy, whether to go on holiday abroad,  – all typical family enterprises – become wrapped up with so much anxiety that years went by before we did any of them at all.

How could we renovate our tumbledown cottage when we didn’t know what O would need? Lifts? Hoists? How would we afford it?

How could we buy a new family car when we didn’t know if O would be able to get in and out of it independently or would forever need our help and two wheels.

How could we go abroad on holiday when we didn’t know when he would next have a seizure and stop breathing? Or how to sit him up in a plane seat, even.

We had drifted, and got stuck.

It is only now, five years on that I think I’m finding my new (SEND parent shaped) feet.

Last year, we went on our first holiday abroad with O. We all had such a brilliant time we are daring to do it again.

This year, we’re finally getting round to renovating and adapting the house with a lift, adapted bath suite and a hoist. And it doesn’t look like a hospital but a home. I might even stretch to say a tasteful one at that.

On Friday, I bought a wheelchair accessible vehicle. And it is seriously cool.

All these things had become huge roadblocks to us having a normal family life but suddenly they seem to be slotting into place. The desert storm dust has settled.

Perhaps my friend was right after all. It hasn’t got easier. It won’t get easier. But it is different. And I am different too.

 

 

 

 

Why do we need special schools?

Why do we need special schools?

It’s a grey, cold morning in November. The sort that really ought to be a mandatory duvet day. It’s hard to get going and the thought of sticking a limb out from the warmth of bed into the cold air is far from inviting.

But Orange is up. Chatting to his toys in his room and ready to start his day.

In this house, we are lucky. Every day Orange goes off to school smiling. He can’t wait to go. Once the uniform is on and the porridge is eaten, he’s looking out the window for his taxi and giggling all the way down in his lift.

For Orange, school is a little different than it is for most children. Unable to talk, walk or hold a pencil, sitting in a conventional classroom would see him lost and isolated. Even with 1-2-1 support, the academic curriculum and bustle of a typical school day would leave him unable to learn, or to join in with the other children.

Beyond pre-school age, mainstream education just wasn’t an option, as much as we hoped it might be.

A school day for Orange doesn’t include grammar, dictation, times tables, French or computer programming like it does for his sister. But it does teach him to access his world, to use his body, to be creative, and to be confident and social, in the very best ways he can.

Instead of learning to read, he is read to. With raucous laughter, his unadulterated joy at a ‘That’s not my…’ book, Supertato or Oh No George shows us that while he may not be able to read the words on the page, the narrative of a story is far from lost on him.

Instead of phonics, he takes part in ‘communication group’, where the children follow Makaton signing or learn to press a button to make a choice between two simple objects.

Instead of running about in the playground, he splashes in the hydrotherapy pool, the only place where he has meaningful independent movement.

Instead of PE, he has rebound therapy, where he is hoisted onto a trampoline to bounce, to feel feedback from movement in his limbs so that he recognises they are there.

Instead of computer programming, he goes to the dark room and uses ‘eye gaze’ technology to learn about cause and effect.

Instead of sitting in a classroom chair, he uses specialist seating and a standing frame to ensure his joints stay healthy, despite his inability to weight bear.

Orange can only do these things because he is in the right special school, with specialist facilities and specialist teachers to make it possible.

They also make it possible for all the children to do normal things that wouldn’t be possible in a mainstream school.

Like school plays. Every child in the school has a part, even if they have to be wheeled onto the stage on a bed because they have extreme medical or physical needs.

Like music and art. Even the children that cannot use their hands independently are helped physically to make music, to paint and do craft.

Like having lunch. Orange goes to the school canteen for his lunch just like any other child. His school provides a specialist allergy free, mashed menu for him that he is spoon fed carefully by an assistant. Some of the children are tube fed, which the onsite nursing team take charge of.

Like school trips. All the children can take part, because there is specialist transport and enough specially trained assistants to take care of the children’s needs. Orange has enjoyed trips to the theatre, to a specialist music studio, and to a sports centre to take part in team sport.

And his personal care and medical needs are catered for in a way that would be impossible in a mainstream school.

Every room is fitted with ceiling track hoists so the children can be lifted.

Every classroom has changing facilities for the children who are unable to use the loo.

Every child has the support of the on-site nurses. For us, we know that he is safe and in experienced hands if he has a seizure at school.

Without a special school like this, Orange would not be able to go to school at all. Which is the increasing reality for growing numbers of children with SEND.

There are simply not enough special school places. And it’s a smoke and mirrors bunfight of assessments, legal letters and negotiations to secure one of the few that are available.

For Orange it took 18 months.

18 months to secure a place at the one school within a 60 mile radius that could cater for his needs.

During that time we were told by various people in the local authority that ‘there were no places at the school’, that ‘they don’t take Cornish children’, that ‘we would never get a place’, and that ‘it would be impossible’.

We were told we were setting out to achieve the impossible by the very people employed to help us.

Were it not for help from the special education charity IPSEA, encouragement and support from wisened parents who have trodden this path ahead of us, legal guidance from a specialist solicitor and sheer bloody minded determination we might never have got there.

The day we got the call to say Orange had a place at the school, the three of us – me, my husband and my mum – fell into each other in tears of sheer relief.

Few families come through the experience of securing a special school place or an Education, Health and Social Care Plan for their child unscathed. There is huge financial and emotional cost.

Many of them never get there. Figures from the BBC this week show there has been a 64% increase in families in England resorting to home education because they feel so badly let down by the system they are trying to do it alone.

That’s why the BBC is running a special feature all week on SEND.

You can follow the coverage on BBC Breakfast, Radio 4 and Radio 5 Live every morning this week to hear about how the system needs to change and what you can do to help, by lobbying your MP and your local authority for change.

Follow #BBCsend on Twitter to join the conversation.