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.

 

 

 

 

Uncommon Parenting 101: Lessons I’ve Learned About Surviving and Thriving

Uncommon Parenting 101: Lessons I’ve Learned About Surviving and Thriving

 

There’s no doubt that raising a child with disabilities can change you. I’m no subscriber to the belief that ‘special children are given to special people’, nor that having a disabled child automatically adorns a person with a Pollyanna-esque gratefulness and wonder.

It would be fair to say that the experiences along this uncommon parenting pathway can shift your centre of gravity fundamentally. But learning to navigate this path, and find your way along it with a spring in your step, can take some practise and sometimes determination.

When Orange was tiny, I didn’t want to be on this path. So for about eighteen months, I still hoped that he would be fine. Without any firm diagnosis, and with plenty of developmental ‘catch up’ time in front of us, there was still room for a small chink of hope that we weren’t really on this path at all. That one day all my fears would be let go as unfounded.

The reality was that many of the things I was afraid of back then did indeed turn out to be on our path. In the first few years of Orange’s life, we rollercoastered head on into some of my biggest fears. Non-walking child – tick. Non-verbal child – tick. Special school required – tick. The big one – epilepsy, seizures that stop your child from breathing – tick. And I hadn’t even anticipated the things that would be most anxiety inducing; negotiating the education and social care systems to get him what he needs to have a normal life.

Even in my darkest moments, though, I never wanted to back myself into a corner through fear or anger. I was not going to be the person asking ‘why me?’, nor the one in denial, or embarrassment.

To me, the ultimate ‘failure’ and loss of control would be to have felt aggrieved at the unfairness of it all and let this overcome my world view. Even though I had no idea how I would do it, once I knew our lives would be different I always wanted to embrace it. To turn challenges into opportunities and to find happiness and fulfilment right where sadness or isolation could have easily set up camp.

So I had to adapt. To find creative ways to establish some sense of control. To feel a little bit normal in what felt like deeply unusual circumstances.

I’m still learning, of course. And I’ve also learned that our circumstances aren’t so unusual after all. Which also helps.

For those of you at the beginning of this path I won’t pretend it’s an easy one. But I will say this.

You can survive things you might have thought impossible.

You can thrive in a life you might have thought unpalatable.

And you are most definitely not on your own.

You are human, and that means you’re really good at adapting. It’s what we do. What I’m about to share here is just a few of the things I have learned along the way. It might not be for everyone but it’s what I would tell myself if I was doing this all again.

You can choose. It’s completely ok to admit this might not have been the life you wanted. It doesn’t make you a bad person. So you can let go of that guilt. But you can choose whether to hang on to the sadness that your lives, and your child’s life, might not fit the vision you had in mind.

Life is unpredictable and if it wasn’t this, there would almost certainly be some other challenge round the corner that would throw best laid plans off course. You can choose to embrace life’s unpredictabilities or to be blown about by them. That doesn’t mean denying that life will sometimes bring sadness, grief or regret, or that any of us might have more than our fill of bad luck, but that you don’t waste the good times wishing your life was different.

 

You do need help. I’m an introvert. I’m also fiercely independent. I don’t do asking for help or showing vulnerability very well at all. But there have been times when I couldn’t have coped with a situation without the help of others. Figuring out the statementing process and securing the right school place for Orange would have been impossible without the help of wiser, more experienced SEN parents. Jumping in an ambulance with a non-breathing child and not having a kind neighbour step in to care for his sister. Maintaining a career without the help and support of family and the right childcare and respite network.

I couldn’t manage any of these situations without help.

So don’t hold back in seeking out help. Online, in groups, at school, at work, or within your own family and friends. Find it and nurture it. You will find that you can give as much as support as you take and this will make you feel good and useful too.

Learn to recognise anxiety. I didn’t, until very recently. Last November in fact. So almost six years into this uncommon parenting life. Before then, I just stuffed it away by over-filling my days with an impossible number of tasks and washing it down with enormous boxes of Maltesers and Kettle Chip chasers. This seemed like a pretty successful strategy until I was close to burnout, my jeans no longer fit and I stopped wanting to leave the house.

So don’t do that.

Listen to yourself, find a healthy outlet for negative emotions and nurture gratitude. I thought it was deeply cheesy at the time, but one of my Christmas stocking fillers this year was the ‘Five Minute Journal’. I don’t exaggerate when I say it has been life changing.

Preserve and create energy. Because you will need it. I won’t lie. Lifting, carrying, changing and feeding a full-size child is physically demanding. Advocating for your child’s educational, housing and equipment needs with your local authority – who you won’t want in your life at all but you will find are a necessity – is mentally and emotionally exhausting. Surviving an emergency hospital admission, or waiting around in wards and hospital waiting rooms for medical appointments or diagnostic tests is anxiety inducing.

These things can’t be avoided. And they might be more frequent that you would like.

In the first few years I treated these moments as being in ‘crisis mode’, that I could get on track with healthy eating, exercise and better sleep habits when those times passed so it was perfectly ok to stop at McDonalds on the way home or to stay up late watching Netflix and drinking wine like some kind of special reward.

Only those times never really passed. So I spiralled into an unhealthy pattern of eating crap, going to bed late and sitting about on my arse.

This one’s most definitely a work in progress but I am feeling so much more balanced and energetic in the last month having started the Eight Week Blood Sugar Diet. Next stop, exercise…

One step in the right direction

Maintain your friendships. Sometimes you will feel like you can’t. You’ll feel that your life is different now and how could they possibly understand. They won’t always get it right. But give them a chance. They are your friends for a reason. You may find that the people who support you day to day may change, but your long standing friendships will give you a sense of normality and a connection to yourself ‘just as you were’ that you will find you want to come back to, again and again. It will keep you grounded and connected to the outside world. This is a good and necessary thing.

Switch off. Mindfulness meditation was recommended to me as a way of managing the looping lists and invasive mind-patter going in my head. It wasn’t for me but I have found that writing and walking most definitely are. Preferably by the sea. Find your thing and make sure you do it. Your brain needs the space.

 

Feeling a little bit like a dickhead and hoping it’s worth it

I’ll be honest and say I’ve shied away from writing about this for a really long time. For fear that everyone else is just getting on with it and hasn’t needed some kind of survival strategy to see them through. That I might just sound like a massive dickhead. Perhaps I do. But if it helps just one person, I’ll take that.

Promises to a friend

Promises to a friend

Words. Words have the power to build us up and to tear us down. They bring joy and laughter, sometimes sadness, sometimes hope. They can unite us, divide us, inspire us and ignite us. They can connect us and help us to understand our world, this weird, wonderful, bewildering and cruel world.

It’s one of the reasons I started this blog. There were words in my head that needed to come out. I hadn’t known what to do with them. They flew this way and that looking for a home and never quite finding a resting place. Finding a connection in the words of others encouraged me to start writing it all down. And the connections grew, blossoming behind the screen into friendships.

Over time I imagined this would become an uplifting, hopeful place, full of laughter, encouragement and joy as we traced our path through raising Orange, giving other families hope too, perhaps, that this will be ok. You are not alone. There is always hope.

But it can be all too easy to paint a picture. To gloss over the hard bits for fear of bringing people down or perpetuating the myth that life with a disabled child is nothing but tragic and awful.

Which it isn’t.

There is joy, there is hope, there is laughter, there is love. But there is also pain, there is also fear, there is also sadness and there is also loss. Because that, right there, is life.

Pretending everything is marvellous all of the time would be, of course, ridiculous. But more than that it can lead us to feel that we should always be thankful and joyous and full of gratitude and aren’t we lucky all of the time.

That the answer to ‘how are you?’ should always be ‘good, thanks‘. That we should quickly move on from difficult emotions well before we are ready.

While a little bit of gloss can be uplifting, go too heavy and it quickly becomes isolating. Silencing.

Sometimes when people are in the greatest of need.

Because words are at their most powerful precisely when the chips are so far down the cliff you wonder if they haven’t actually drowned. It is in these moments, when simple words on a page, told truthfully, letter by letter, can keep your head above water, even when your heart is in the sole of your boots.

For much the same reasons as my friend Alison, I haven’t written anything since June. In her beautiful and honest writing about friendship after loss, she has captured tenderly why neither she, nor I, have written over the summer. Our heads and hearts were full of someone else’s story, that wasn’t ours to tell.

But also, I really didn’t know what to write. Because I panicked and wanted to gloss. To paint over the pain, the fear and the loss facing dear friends to make it go away. That if I just imagined hard enough that it would be ok, if I hoped high enough, that a miracle would happen, that magically life would somehow return to normal and they wouldn’t be saying goodbye to their little boy.

I couldn’t do that.

But I can do this.

I can promise to listen.

I cannot know the depth of your grief but I can see you through your tears. I am here. I will ask you how you are, don’t hold back, dear friend. I am here.

I can promise to be patient.

Grief is the proof that you loved well, dear friend. Time has no place here in judgement. While you grieve, I grieve with you.

I can promise to lift you up when you are ready.

I cannot know what the future will be, dear friend, for you nor I. I cannot try to fix the unfixable. I do not have the answers. There is no handbook. But I can be here beside you and I promise to be present. I have no expectations of what your grief should bring. If you need to vent, I am here, if you need to cry, I am here, if you need to laugh, I am here too.

And when you are ready, dear friend, I will be here with words of hope and encouragement. I may not always get them right but I promise to try.

Most of all, I can promise not to gloss.

So, dear friend, I will not try to distract you from your grief nor hurry along your tears. While I am far away in distance I am with you in this. I will not shy away because I cannot find the words.

“Remember, that grief never asks you to let go of love”                         Ashley Davis Prend

You can vote for my brilliant friend and her honest, raw, funny and totally gloss free blog Are You Kiddingney in this year’s Mumsnet Blogging Awards.

 

Hearts over heads

Hearts over heads

Earlier this week, Katie Price came under media fire for saying she would have aborted her son Harvey had she known about his disabilities when she was pregnant. Perhaps her honesty shocked a lot of people but living in a country where over 90% of pre-natal Down’s Syndrome diagnoses end in abortion, to take one condition as an example, we know that Katie isn’t alone.

Perhaps Katie’s point could have been articulated better (and fellow mum to a disabled child Stacie Lewis, who I feel privileged to know, wrote this wonderful piece in The Guardian), but when I heard what she had said I knew exactly what she meant.

She meant that she would have been afraid.

That she would have ended her pregnancy based on medical prognosis, ignorance and fear of disability, not knowing the characterful, sweet boy her baby would become. Because, in those circumstances, all too often, that is all a mother has.

Since Orange arrived, I’ve met and become friends with a lot of other mums of disabled children. A complete cross section of society that I would not have met otherwise. Different backgrounds, different views, but united in our experiences of being parents to disabled children and the world in which we are raising them.

We all adore our children. Knowing the little people that they are and the love we have for them, I don’t know a single parent who would wish to turn back time and experience life without their child. That thought is as unpalatable to us as it would be to any parent. Contrary to what some of society may think, our lives would not be better without our disabled children in them.

Before I had Orange I would have mistakenly and quite offensively believed that life with a disabled child would be tragic and terrifying, joyless, isolating and punishing, and that the hardships would far outweigh love. Being frank, I would have believed it to be the end of any life worth living. I would have done anything to avoid it.

But I find myself in an uncomfortable situation in discussions like this because I don’t know any other mothers who have experienced quite what I have and it’s not something I talk about often. About a year before we had Orange, I had a termination. We were told that our baby had heart conditions that were ‘incompatible with life’ and that there was ‘very limited chance of survival’.

Before we even knew the underlying diagnosis (Down’s Syndrome) that had caused our baby to be so (apparently) desperately and terminally unwell, I had decided to end the pregnancy.

Because I was afraid.

Afraid of giving birth to a dead baby but even more afraid of what might happen if he lived. I justified my decision based solely on what the medical prognosis had told us. That my baby was probably going to die anyway and if he survived the pregnancy his life would be short and painful.

I was afraid. But I thought I was doing the right thing. For him, for us, for Bea.

If we had never had Orange, I would still believe that the decision I made on 29 January 2010 at four o clock in the afternoon was the right one. And I would never have questioned that what the medical prognosis told me was correct.

The tears I cried as the theatre team at St Thomas’s chirpily asked me ‘what procedure are you in for?’ while they placed the needle in my hand and the deep relief I felt as the gas washed over me and turned off the world, and drowned my fear for the sick child inside of me, are etched in my heart forever. It felt wrong, in my heart. In my head, I believed I was doing the right thing.

And now?

Now I question that medical prognosis that drove me to have that termination. Now I know too many children, alive, and beating the odds their parents were given. Children, who by all medical accounts should be dead. I question the decision I made. Now I am no longer afraid of disability and now I know that medical prognoses aren’t always right, I wish I had let nature take us on whatever path life had in store for us.

Now I count my blessings for Orange. I am thankful every single day of my life that I didn’t know when I was pregnant with Orange that he would have disabilities. Because again, I would have made a decision with my head, not my heart.

A decision based on scary lists of symptoms with big medical words like hypotonia, nystagmus and status epilepticus.

A decision based on what I thought I knew about the hardships of disability with no knowledge of the sweet, gentle soul I gave birth to, the easygoing and peaceful baby he was, the cheeky Peppa Pig obsessed toddler he became or the cute and funny almost five year old he is today, with his surf dude blond hair, a divine appreciation for the ridiculous, lover of cuddles, Bert and Ernie, rugby and bananas.

A decision based on things I had no direct experience of but my preconceptions would have told me I couldn’t cope with, not allowing even a chink of possibility that life and love would carry me through and leave me stronger and happier on the other side.

A decision based on what I might have mistakenly thought would be best for Bea, with no knowledge of the fierce sibling bond they would develop and the adoration Orange has for his devoted sister.

A decision that, for me, I now know, in both my heart and my head, would have been the wrong one.

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Lifejackets on

Lifejackets on

“Always wear a lifejacket, it could save your life!”

Living right on the shoreline, we have learned to have a healthy respect for the water. For all its beauty, the sea is a powerful and dangerous thing. If I was the boating type, I would know that without a well fitting lifejacket, I would struggle to keep my head above water if I went overboard.

Given that I am absolutely terrified of ferries, yes ferries (thanks, TV news, for imprinting the Debrugge disaster into my brain at a young tender age), there won’t be much boating action happening anywhere round here anytime soon. But if I was to step onto a boat, I would certainly be doing so with my lifejacket fastened tight.

Sometimes I have likened our experiences of raising Orange to what I imagine it must be like to sail the high seas, if you are a sea-legged kind of person. Periods of calm, serenity, beauty, a feeling of deep connection with what life is all about (and, of course, rather a lot of fun), interspersed with raging storms that you have no choice but to keep your head and steer your ship through if you want to make it to the other side.

Life can be like that for any of us, I know, but in raising Orange we know that he will be dependent on us for life and we must equip ourselves for many a storm to come.

As Orange has got bigger, we have learned that we cannot do this on our own.

For the last few months, we have been testing waters of an entirely different kind. Orange has been going to stay with a respite carer for an overnight stay or two. He has just returned from his longest stay yet – two days and one night – that for the first time we were not too exhausted to enjoy.

For the last two days, while Orange has been waited upon hand and foot, utterly spoiled, and taken out to enjoy the winter sun at Mount Edgcumbe, Bea, Gavin and I have made the most of doing some of the most un-wheelchair-friendly activities we could find.

Seaton's Tower

We have climbed lighthouses. We have ridden bikes. We have walked the seafront. We have swum, splashed and goofed about in swimming pools. And we have eaten rather a lot of ribs. And ice cream.

Ice Cream

The time we have spent together has been golden and we have cherished it because we have been able to focus on Bea. And on ourselves. In a way that we never can when Orange is with us because his needs always have to come first. As they should, because he is the least able to help himself, but as much as I love us all being together and experiencing things as a family, I will be the first to admit that it is hard work.

Which wheelchair shall we take – the all-terrain or the one that actually supports him? Will the wheelchair get in the door? Will there be steps? Will it be warm enough for Orange? Will it be too noisy? Will there be any food we can feed him? Will there be anywhere to change him? What will we do if he doesn’t cope? Bags, medication, drinks, spare clothes, iPads, wheelchairs and an Ernie are minimum requirements for a family day out.

Sometimes it goes well, sometimes it doesn’t, but I don’t think I realised until we had a day out without him, how I am always on high alert and how this can impart an underlying aura of tension into any family activity, no matter how familiar or fun it might be.

Having a day just with Bea meant we could do things on a whim. It’s sunny, great! Quick trip to The Hoe.

Oh look, the lighthouse is open, shall we go up it, YES!

In our enthusiasm, neither Bea nor I remembered until we were halfway up and fully committed to the task, that we both harbour a fear of not only heights but tight spaces. Imagine our joy when we realised, half way up, that it was getting narrower and narrower, steeper and steeper… but because we could focus solely on each other, we worked our way through those fears together.

One step at a time, we climbed. One foot in front of the other, until we reached the top.

Lighthouse top

As a sibling-carer, Bea has learned too young that life can be frightening and unpredictable. That people get sick, and sometimes they die, and not always because they get old. I know she feels the weight of unpredictability in our lives and has taken on more responsibility that she should have for keeping us all afloat.

She has also made some big sacrifices in her life. Age seven, she knows how to give CPR and call an ambulance but she doesn’t know how to ride a bike. With respite care, we can ease some of that burden for her, and for ourselves too. As well as climbing a lighthouse, we were able to take Bea out to ride her bike today for the second time ever.

It’s taking a lot of adjustment to get used to sending our little boy away while we go off to have fun without him. I won’t pretend that I haven’t been eaten alive inside by guilt about that and I won’t pretend that I don’t feel sad when he is not with us.

I do.

And I wish he was right there with us, climbing lighthouses, riding bikes, and splashing and duck diving in the pool. But we have to be honest with ourselves, and fair to each other, in recognising that this isn’t the way our lives can be. They just can’t.

Without respite care, we would be overwhelmed and overwrought. Exhausted. And totally unable to steer our ship through the storm when it comes.

When I am feeling guilty about sauntering easily down the seafront, gazing out to sea and chatting to my little girl while my little boy is being cared for by another, I have to remember that actually it’s good for him too. If he is to have independence, relationships, freedom and confidence in his world he must learn that, with careful choices, he can have fun and be safe outside of his immediate nuclear family.

He has a right to adventure, too. I mean, just look what he gets up to when we’re not around.

Orange wig

“I knew, when I met you, an adventure was going to happen”

Winnie The Pooh

Lifejackets on, folks.

A Cornish Mum