The One Show

I’m not sure what the chances are of talking to a film director for TV one week, regarding disabled parenting, and then a couple of weeks later being interviewed on the phone by the BBC regarding the same issue, for the average lady.

This recent series of events has coincided with a time of plentiful celebration of my birthday, and an enormous boost in the arrival of a surprise bunch of flowers from a company who wanted to send flowers out to people nominated by others who thought they deserved them. A mahoosive bunch arrived, the kind of size that required a Tummy Tub to hold them, and I just was overwhelmed with happy surprise. It felt like a big cuddle had arrived from the world and it had way more impact than filling two vases to the brim with beautiful blooms.

Our family got flamed hard by critics when our little boy was born. We cannot even describe how hard things were, as we are torn between telling it as it is, and protecting ourselves. We got cruddy treatment after the birth. Our care plan was disregarded and I was made very unwell by a combination of neglect and rough treatment from every single professional who should have been building us up, providing adequate care, and not making us argue with them all the time.

It can begin to strip you hard when you realise that there are that minority of people who do not support disabled parents, they undermine them, and they belittle them, and they act unlawfully to them. It can make it very difficult to get out there and interact. That massive bunch of flowers soothed a part of me that cannot help being on the defence, because it’s been attacked so often.

The first BBC phone interview, I let rip. I told them about how we were given two hours of antenatal classes, and therefore less than ordinary parents. I told them about the things professionals questioned; even when we had already described the solutions we were going to use to parent our baby. I told them how it felt, to be filled with joy and terror at the same time.

I got feedback with all the calls – about how I was not alone. There were many parents calling, frightened and bewildered by their treatment. How can you run to social work to assess you for your needs, when they are the ones who will turn that against you? Where do you go for support? How does all that feel?

Some time ago I led a song in the bounce and rhyme group I go to with my son. I felt shaky all over as I did it. I felt sick with nerves. I felt shattered that this was how hard my confidence has been hit. I have managed an afterschool club with many children passing through. I managed my own staff, and I coped with a ton of stress in the public eye.

I cannot explain what it feels like for that to be broken inside you. To be treated like a child whenever I want to get on the bus and the driver is incredulous that I need the ramp put down. Or that there was a nurse in my post birth week that refused to let me show her how I needed transferred from bed to chair my way without turning it into a long debate. Or that there was a time I was balanced on the edge of a bed, heavily pregnant to use a bed pan because the nurse did not know how to position me lying down (and refused to get assistance) and I was left in danger of collapsing and injuring me plus bump.

It wears you down. Now the flowers did some of the soothing, but the phone interviews went deeper. I was being asked about all the stuff I think about all the time. I was being asked to describe my experience and share what I thought. Then, I was being asked to allow a film crew come into my house and film my baby and I for The One Show.

I have no idea what the programme will turn out like. As someone who fears many things, for some reason slap a mike on me, and I am fearless. As long as my hair was done, I was ready. Of course they could come. It wasn’t till the night before that I realised it was Sophie Morgan who would be wheeling into my completely blitzed living room. She is like a babe on wheels. Very pretty. Very much part of my time being housebound, when I watched her model along with other disabled women.

This required much layering on of my favourite foundation and praying the camera would be been kind. Pacing in advance kinda went screwy, as the adrenaline was going like the clappers. I was buzzing like the mains had been attached to me all over.

A woman on the bus asked if I could walk at all. I did not answer her. I diverted her – polite but firm.

A man at mother and toddlers was rude to me, and I diverted him too. Polite, but firm.

I disagreed with someone at church today regarding how well the NHS is doing. Polite, but firm. I would normally have stayed very quiet and avoided the issue.

I so hope this repair lasts. It’s like finding a part of me that got lost. The part that coped when I dealt with mind blowing child care issues and challenged care commissioners in meetings to be more consistent in their guidelines. It was not fearless, and it cried plenty when it had enough, but it would have lead a hundred songs in a singing group without a flinch.

 

Sometimes us strong chickens look tough as f*ckety f*ck. We are so not. Ever cried till you nearly vomit, coz you are so blasted by the fight? That is sadly the place many disabled parents live – in a terrifying place. If they defend their needs then they expose their families. And they fight all the time. I really mean that – all the time, just to cover the basics.

I told all I could, and spilled my guts, and did not notice the cameras all around. I did notice getting miked up - that’s all a bit touchy feely in a rather ho, ho, ho way. My little boy was so angelic even I was a bit surprised. He loves the camera. He sat for ages in his bouncer and just watched and he acted like he was on some kind of cute advert for cute babies.

I told Sophie just about all I know – we talked about equipment (and the lack of it) and wheelchairs and their unique properties and bus drivers, and kerbs, and the extreme highs and lows involved raising a baby with alternative methods. I told her more than I thought I would about the treatment we had. I still aim to explore as much as I can of that on this blog. Paramount is the need to share equipment ideas.

There was much fascination over the Baby Bjorn sling I use to carry my son around with me as I wheel. It’s a perfect example of simple solution meets significant need. It requires an article of it’s own as it is both an easy peasy yet complex solution. It works beautifully. It kills my back. It cannot be used when I have a UTI in my kidneys. It is our freedom, and the best, best feeling in the world to have a baby on your lap. It is awesome in both senses of the world. I adore us wheeling together. I dread another UTI. It’s impossible for the medics to understand that my kidneys are part of my pram.

 

The sling sums up so much of the issues involved. The right solution can save so much finance, and time and energy, etc. But it may still be fragile and open to falling to bits leaving a parent stuck and vulnerable. It can be both awe inspiring and frustrating at the same time. As soon as my baby is too big for that sling I will weep. I love being the pram, even if my ribs have been through agony to the point of unbelievable at times. I hope above all that this is a time where more and more solutions explode into being, and isolated disabled parents feel they are all part of the same drive to better treatment for all.

(I will post up release date, etc when I know, etc.)

Just spoken to BBC, who say that programme most likely out 22nd November and that it looks great. Will keep folk updated.

One to One?

Spent lovely afternoon today with group of mums and babies we met during the pregnancy. I know all of us are a bit astonished to find bumps turned into babies, and now they are all 6 months old. All unique, and all a bit yummy too.

Most of these mums we met through attending NCT (National Childbrith Trust) antenatal classes. These turned out to be a God send in more ways than one. Not least because the classes the NHS offered us flagged up some dreadful inconsistencies in the care we received because I have a disability.

Our midwife was adamant. We needed one to one antenatal classes, and she was going to get us them. This sounded great to us as we suspected a lot of my questions just would not fit into a standard class set up. There was talk of them being at a suitable time for my husband - of course he needed support too (pah, why make it convenient? in the end it was take time off work, or no classes together for you). I had to fight for those classes. After an initial burst of excitement that we were getting good accommodation, the heart sinking began.

Firstly the class coordinator argued with me over the phone - why should we have one to one classes? Why, what kind of birth was I going to have? Surely as a wheelchair user it would be caesarian?

I was not happy. The whole -'it should be a c-section' I'm going to write about later as it's an erroneous assumption to make, and one that caused me a lot of distress. I told the coordinator to talk to our midwife who promplty stated her wishes and got the ball rolling. First hurdle over, we set aside dates. I don't always ask medical professionals to be mindful of my perfume/aftershave allergy as many doctors don't wear it, but I had an instinct to inform the coordinator. This proved to be wise as she told me basically she wore a lot. I asked her to consider writing a post it note and putting it on a mirror to remind her in the morning not to wear any, as this is a trick another person told me they use as understandably it's a fixed part of their routine.(She remembered on the day. She did not however remember when she met me in the waiting room the next week, and insisted on standing very close to chat. Awkward. Much.)

Originally we were told we would have two classes, and this would cover everything. In the end we got one afternoon, which was mostly filled up with meeting the maternity physio to talk over possible birthing positions. The rest of the class was taken up with the coordinator taking us into the labour ward and us looking around one of the rooms. Although this was like seeing the holy grail in advance, and reassured me beyond doubt that the rooms were spotless, this was about the sum total of our antenatal classes. I estimate we were given under two hours of attention.

Now comes the very uncomfortable part - the past where staff tell us something that sounds so ridiculous it makes us blink. Apparently this meant we had covered everything they normally cover in the classes. There was no offer to give us another afternoon. Not one bit of discussion on how to tell I was in labour, or breast feeding, or anything else we thankfully did cover in the NCT classes.

We were lucky. The classes are discounted for people on benefits but even so, they were still not cheap. We could afford the classes and that was just as well. Without them we would have been left with an alarming lack of information. Instead of getting extra attention, we were given less than any other expectant mum. I was too tired of it all to make a complaint, but it still shocked me that we were given such neglectful treatment. Whatever you learn in antenatal classes there is one thing for sure - no matter what the content, it does at least do much to prepare you mentally for what is ahead. This was like being given a pregnancy book with most of the chapters missing, and a clear expectation from the hospital that we were to be very grateful.

Sadly what we learnt was this - watching a coordinator smugly present her measly offering was inredibly hard to bear. It showed so much lack of care to our needs; to anyone's needs in fact. Especially when we were told of the pride the hospital had in supporting disabled mums. In fact, didn't we know that they'd just had a mum in recently who was unable to use legs or arms effectively. Apparently the care they'd given her was excellent. I really hope it was. Ooh, maybe we could be pals? I said I'd be happy to give my email address but not my phone number. The coordinator then emailed this poor mum who'd only just had her baby. I'm sure she was delighted to be bothered at the time when she was so sleep deprived she was hallucinating.

I'd say the whole set up was a farce. It actually hurt because if we'd relied on this afternoon alone, I cannot even think what a state we potentially could have been in. Our whole experience was mixed, and still is, and regretfully our overriding feeling is this. Become a parent when you are disabled - be prepared to swim hard and fast and seek out your own support, because not only will it be given poorly, it will be given with a proud smile that belies just how abysmal the system really is.

It makes afternoons like today so precious - laughing together at babies tumbling together on the floor, and enjoying the richness of new friends and their growing children. A beautiful reminder that lovely moments can do a lot to hide the cr*p surrounding you.

What is a SOYA parent?

Are you a parent with a disability? Do you do an amazing whack of stuff with your A*s on the sofa? Are you a wobbly bod? A bendy bod? A knackered being? Always in fricken pain? Then, you too are a S.O.Y.A. mum/dad.

You parent with the tiniest amount of energy and make it look enormous. You Sit On Your A*s a heck of a lot, and yet somehow dinners happen, children get fed, and you cope.

You deal with a deluge of cr*p on a daily basis. It is your role to negotiate a million bits of awkward body wrangles and smile like you are in a very glam film.
...
Why has this group been created for you?

Because when I was pregnant I thought it was a great idea. I was full of huge hormones. I fantasised about making a wee group and badges, and stuff and it got me through the weird and tedious mindfield that disabled parenting turns out to be. It turns out, the S.O.Y.A. mum in me still needed to make this page and witter on in my own wee merry way.

The Difference

The Difference

The difference is as clear to me as Gaydar. I can see it as soon as it happens. I want it to be Not True.

I want it to be my imagination.

But as soon as I detect that look, I feel queasy.

Some of you know me as Fairysparkle. I used to have a blog called Miss Fairy's Waffle at http://rhodiola.blogspot.co.uk/

I used to be able to access that (ironically), but now can't, due to fuzzy memory as to how it got set up in the first place. I have had many folk since saying, ooh, see that mad story you've just told me, you should blog about it.

Blog's take time. They take imagination. They take angst.

We had plenty of angst going on. I have jumped several years since then and although I'd like to think time has been kind, and I look not a jot older, there have been some lovely moments and some crashing lows, which means time sent us a mixed bag.

The biggest high was getting pregnant. Of course getting married has been fantastic, but this was like a whole load of icing on the top. Long story short, it took time till we found our wee baby. It was like he was hiding and we had to unlock a whole bunch of stuff to find him. When we did, it was like the deepest joy had finally found it's place and settled in, just where it belongs.

Whenever I post about our baby, my heart constricts.

It tightens because I know how much we longed for a child.

It was desperate. It was like living on a knife edge. It was like mourning before we began, because like I said, it took a while to find him. It wasn't till the very last minute we saw that all the hopes we'd poured in this pursuit actually had a purpose. So, I know, that there are hearts out there that beat every single day crying - where is my little one? I know, that even reading the word 'pregnant' can make a stomach turn. That there is a well of gratitude alongside the angst that spurs me on. It makes posting negative news very hard. No matter how sad or tough a situation is, I do know that we are very blessed. We got to meet our little one, and we will never forget the tears shed whilst waiting. Longing to parent is one of the vilest pains a person can endure.

I live on another kind of knife edge too. I live with chronic ill health. Life long disability. Life long misunderstanding.

I used to work in childcare. I was responsible for well over a hundred children over a six year period, first as a play worker and then three years in management. I was pretty poorly all of the time. My mobility was never great, and I ran on so little puff I have no idea how I managed it. Just before I got married, my legs went from wobbly to cr*p.

I was swimming every fortnight, and walking as far as I could daily and then over a period of months, I became housebound. I have no idea what made my mobility deteriorate, although there were factors that triggered a relapse that I can identify. Didn't explain why this time the relapse took away whatever makes legs go and this time my mobility did not return.

I have very, very limited mobility now. I can shuffle around a small flat with a stick, and a prayer as I also can collapse with fatigue with or without warning. My head is full of concentrating to get from A to B. I have literally no idea what walking without concentrating is like. I also have no idea what it feels like to walk to the local shops. Or to the end of my garden without fear. It's like this time, the legs went, and I lost the memory of walking along with it. Even in my dreams. Without a wheelchair, I am stuck. Housebound. Trapped.

The rest of me switches on and off in availability, and it hurts in various places all of the time. 24/7. No idea what energy and vim and co-ordination feels like. Or not hurting.

I  therefore have experience of  carrying out childcare whilst having an invisible but very real disability. Now I am a parent with an obvious disability. I have swapped. You can see me, coz I has a big wheelchair stuck to my a*s. A beautiful chair, and one that runs on electricity, but none the less, a fricken mobility aid.

And that's what makes the difference. I know how someone looks at me standing up and looking 'normal'. I now know how they look at me in a wheelchair.

So, it's a shock to realise that it really does happen. Being a wheelchair user has led me to seeing a look that instantly lets me know I am one of 'them'.

Not that invisible disability is easy. Oh my gosh - it's awful. It's just that this look opened up a different world.

So now, with a six month old son, and a heap of cr*p treatment, I decided to create SOYA mums/dads. Coz sometimes you just have to find yourself a new label. Other than - ooh, but you're just like normal like "other" mums. Except, you're not.