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.

 

 

 

 

11 Comments

  1. Emma 29/01/2018 / 11:07 am

    So reassuring to read this. My daughter is 3 and the road ahead seems so scary at times, the adaptions, cars, travel. Thanks for sharing

    • KatherineKowalski
      Author
      30/01/2018 / 5:43 pm

      It can seem so overwhelming can’t it. One step at a time x

  2. Paul Arvidson 29/01/2018 / 11:32 am

    You might have changed the blog name, but anyone can spot your beautiful writing a mile off 🙂

    • KatherineKowalski
      Author
      30/01/2018 / 5:43 pm

      That’s made my day Paul, thank you! x

  3. Steph Curtis 29/01/2018 / 3:19 pm

    Glad you managed a holiday (we all need them!) and that you’ve settled into this life x

    • KatherineKowalski
      Author
      30/01/2018 / 5:44 pm

      Don’t we just! And looking at the grey skies today I’m sure we could all do with another 🙂

  4. Donna Giles 29/01/2018 / 3:43 pm

    Yes it is different. We all have to find our own way through life. Glad you feel that you are finding your feet now.

    • KatherineKowalski
      Author
      30/01/2018 / 5:44 pm

      Finding the confidence to make your own path is part of the battle I think x

  5. Inclusive Home 03/02/2018 / 8:44 pm

    Beautiful post, and other than J being our first, I can relate to pretty much ALL of this!
    We’ve not ventured abroad yet, but may venture across the channel this year in our new WAV….!

  6. Sharon 21/04/2018 / 8:39 pm

    I found this a really uplifting post, thank you

    • KatherineKowalski
      Author
      30/04/2018 / 5:09 pm

      thank you that’s so lovely to hear xx

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