Sunday, July 26, 2015

Wheelchairs

As most people who know me are aware, I currently have Alber E-Motion M15 power assisted wheels and I have loved them for every minute of the five years I've had them.

I was incredibly fortunate to get help from Access To Work in being assessed for and part-funding them, and even more fortunate that being self-employed and working from home I was permitted to use them as much as I needed to. They're not categorised as being for my personal/social/leisure use as the assessment was done purely with my work needs in mind, but at the same time, no one expected me to remain housebound/struggle to walk/submit to being pushed/use a badly-fitting generic non-powered wheelchair/etc when I have a properly-assessed-for power-assisted fitted wheelchair that is ideal for my needs sitting right there in my house.

Predictably enough, with pregnancy my wheelchair needs are changing. My wheelchair as fitted five years ago is becoming increasingly uncomfortable to sit in, and my stomach muscles are no longer strong enough to allow me a proper push, especially going uphill, and the increasing size of the bump means I can't lean forwards at all. Even on ideal terrain, such as the absolutely flat smooth surfaces in my local supermarket, I still have to stop and lean back when the baby decides to have an energetic wiggle.

I'm only going to get bigger for the next three months, and my stomach muscles are going to keep loosening and stretching, and then once the baby is born I want to wear a sling rather than trying to negotiate fixing a pram to a wheelchair (or worse, having a PA pushing my baby in a pram alongside parents with their babies in prams while I am baby-less, self-propelling and trying to pretend that I'm the one of us who belongs in the group of parents walking around the park with their babies), not to mention that it's going to become even more important to conserve my energy so that I can meet the baby's needs... I'm going to need a fully-powered wheelchair.

We knew this would be the case before we started trying to conceive, and as such we saved up to be able to purchase a fully powered wheelchair when the time came. My needs aren't especially high, my body is not particularly fragile or unusually proportioned, and of course I won't be sitting in the chair all day every day. But, with the baby in the mix, we don't want to buy something random and second-hand - we were always clear that we'd want it from a reputable source, covered by warranty, and with servicing available locally. The price range we were expecting was between £2,000 and £6,000.

One problem is that the unexpected £5,000 we already have to pay for the stairlift, plus a rent rise and a couple of other unexpected factors that aren't disability or baby related, has left us with rather a different financial picture than we'd imagined.

A bigger problem, though, is that I can't get an assessment - and am loath to just trundle into a random mobility supplies shop and ask a salesperson to assess me, in case what they decide I "need" turns out suspiciously close to what they will make the most commission on or are desperately trying to shift out of their stockroom.

The NHS Wheelchair Services position is that powered wheelchairs are only prescribed for people who need a wheelchair to move around their own home. This is obviously not the case for me. They also can't prescribe a self-propel wheelchair to someone who can't self-propel, and attendant wheelchairs are somewhat dependent on *having* an attendant.

This issue couldn't be tackled ahead of pregnancy because resources are quite in-demand enough for situations which already exist, without being done pre-emptively for situations which only "might" occur such as conception of a baby. But my GP and midwife have, since week 10 of this pregnancy, tried every route they can think of, up to and including obtaining the Wheelchair Services referral form and then writing all over it that while we know WS won't fund or prescribe a powered chair for me, maybe they could just *see* me and *advise* on what sort of chair I should be privately purchasing... nothing. The most useful response we've had is "well, whoever assessed for her last chair can assess her again," except of course that was Access To Work and even if they hadn't been hideously defunded in the last five years, my non-work needs for late pregnancy and early parenthood are not their remit.

The Social Services OT also tried, but again, all roads lead back to NHS Wheelchair Services, who refuse to so much as see me.

Following a Twitter conversation with a friend, Scope tweeted to me that I could try the Mobility Trust. I've written to them, but have not yet heard back and I believe from the information on their website that they are more about helping people who already *have* assessments out of the funding hole, rather than helping people get assessed in the first place. Steve and I know that despite our current financial upheaval and zero assets, we're still relatively privileged in that we have an above-benefits-level income and zero debt, and as such probably don't come under the charity umbrella.

The best result I've been able to obtain is that one morning, after an hour or so chain-phoning this or that organisation, explaining the predicament, and being told "not our remit, you might want to try (person) at (organisation), their number is..." I actually got to *speak* to someone at the local Wheelchair Services. They still refused to help with an assessment, but they did give me the name of the supplier they usually use, and told me that they regarded that supplier as being a trustworthy and established local business who would assess my needs without a rampantly profiteering head on. It didn't quite work out that way. I made an appointment to go in and discuss my needs and was proudly handed a couple of PDF printouts from manufacturer's web pages, for incredibly expensive made-to-fit support-everything bespoke powerchairs. The salesman seemed to lose a bit of interest when I said that neither my needs nor my budget were quite that high, although he did offer to get one or two powerchairs in and then call me so that I could test them. This is not the same as discussing my needs and preferences and figuring out which of the chairs on the market might best suit me and then getting *that* powerchair in for me to try. It's fine as a fall-back option, but this is an investment of thousands of pounds of our own money, we'd really quite like a few more options and a little bit of guidance!

Part 1 Part 2

Stairlift

I've been supposed to have a stairlift for quite some time now. But what with the insecurity of living in a rented house, and sharing that house with a non-disabled person who likes to run up and down the stairs unimpeded, we never went ahead with it. I carried on going up stairs on all fours, coming down stairs on my bum, and sitting halfway up/down the stairs having a little rest when necessary. It was okay. I'm under 35 and not exactly frail, I've got solid young bones and plenty of padding on them. When I fall down the stairs, so far nothing worse has happened than some cuts, bruises, grazes and/or carpet burn, maybe a bit of damaged clothing, and whatever I was carrying taking a brief flying lesson.

As you can imagine, being pregnant - having a baby on the inside for now and knowing that once the baby is on the outside I still need to get both of us up and down the stairs safely - changes the goalposts somewhat. All of a sudden I'm a lot less flippant about falls. On top of which, as my bump gets bigger, it becomes physically more awkward (and eventually will be full-on impossible) for me to go up on hands and knees or rest halfway if I need to. Steve and I agreed that pregnancy would make us concede to the stairlift.

(At this point well-meaning people tend to sagely advise us that we should move house to a bungalow. Leaving aside the implied insult that we are too stupid to have thought of such a thing, the trouble with bungalows becomes apparent when you try to actually *get* one. Social housing bungalows are too small, privately rented bungalows are too expensive, purchasing a bungalow is out of our reach, and all types of bungalow are very rare. We do search occasionally, but in every category those few that come up and look like they might meet our needs tend to, on further investigation, be on special zones or estates that exclude us with rules stating they are only available to over-55s or that children are not permitted.)

The delays and difficulties with Social Services meant that I was 21 weeks pregnant before the Housing OT Gatekeeper phoned me - and promptly advised that a stairlift would take at least six months to sort out, which isn't a useful answer to someone who needs to be baby-ready in four months. Happily I was able to persuade her to refer it upwards, with the result that she phoned me the next morning and I got an appointment to see the OT at 23 weeks.

The OT was lovely, as OTs tend to be. Along with various other things, including a referral to a specialist OT service for disabled parents elsewhere in the country, she agreed that a stairlift was required ASAP, and since it was therefore a prescribed item rather than a personal choice, gave us a financial assessment form.

Financial assessments are conducted differently by different departments. They all have different criteria. For example, at present, I'm not eligible for welfare because as a household we have earned income - but I don't have to pay for my basic care package because that is calculated on savings, investments, assets, property, trust funds, etc, with our earned income from our current work being disregarded. For a Disabled Facilities Grant, which is what would normally pay for a stairlift... everyone had assumed that we'd be eligible, but it turns out we're not eligible due to Steve's earnings.

Which means we (meaning he) will have to fund the stairlift privately.

Which will be about £5,000.

There's no choice though. We don't have a downstairs loo and there's nowhere we could put a commode downstairs, therefore if we want me to be able to use the loo with hygiene and privacy, which in the UK is considered a pretty fundamental necessity for anyone, let alone a pregnant woman or new mother, we need a stairlift.

At 26 weeks the OT came back with a couple of engineers in tow to measure things and pull faces, and the proper final itemised quote should be with us by 28 weeks.

They tell me there's then a 6-8 week wait after I get the quote, confirm the order and stump up the deposit before work can start. The particular parts for my particular measurements and prescription need to be shipped in and then of course the relevant engineers must be booked. That will bring us to 36 weeks or as near full-term as makes no difference, or to put it another way, I might end up using a bucket in the lounge after all, or trying to find the money to allow me to spend what should be the "nesting" period in an accessible hotel room. I guess the best case scenario is that if I go into early labour, they might not be able to release me and baby from hospital until the house is habitable.

That the delays and heel-dragging of social services in the first half of my pregnancy has resulted in my basic predictable needs for the final stages being cut this fine makes me even more upset than the money aspect.

Part 1 Part 3

Not 24 weeks

I don't know if anyone was watching closely enough to notice, but there has been no 24 week update, and there is also no 24 week picture, and now I am just over 27 weeks pregnant.

This is largely because there's been just too much other stuff to deal with. All three of us are healthy (usual parameters), no emergencies, just... Stuff.

The first bit of the Stuff is Social Services.

This was very much a planned baby, and part of the planning was getting input from Social Services before trying to conceive. I'm pleased to say that we got a good, positive response. We were reassured that we had an absolute right to a family life, and that Social Services would support us to meet not just basic survival needs, but also to fulfil my role as a parent. The child is not automatically considered "at risk" and if I struggled to meet the child's needs then before Child Social Services would even consider getting involved, Adult Social Services would need to have done everything possible to enable me to look after the child myself. Specifically I was told that instead of my case remaining effectively "closed" (as it is while a person is stable and their needs are being met by their existing care package), once I informed them of a pregnancy I would be on the active caseload of a named Social Worker, they would review me every three months during pregnancy and the first year of the baby's life, or more frequently if necessary, and as such my care package could be altered according to the rapidly changing circumstances.

That filled us with confidence and we went ahead. Spool forward to Spring 2015. Eight weeks pregnant, I met "my" social worker, and we got on well. She was every bit as positive. We decided that she would line up all the various referrals to Occupational Therapy and Independent Living and so on, but given my history we would wait until my 12-week scan before forging ahead, to save on upsetting encounters if anything went wrong.

So, after my 12-week (actually 13 and a bit) scan, I phoned her office... was told she was off sick but would be in touch when she got back the next week. Nothing happened. Phoned again at 17 weeks... was told she was off sick but would be back the next week. Nothing happened. Phoned again at 19 weeks... was told she was off sick and they didn't know when she would be back. I pointed out that the baby was not going to wait indefinitely until "my" social worker was back and asked if I could be transferred to someone else's caseload. The answer was no, but that a Duty Social Worker would call me back.

(Duty Social Workers are to named social workers as duty GPs are to named GPs. They're fully qualified, and authorised to open and read confidential client files and take necessary action. But they're supposed to deal with that day's emergencies and situations requiring an immediate response, not ongoing or future care requiring familiarity with the case or time for research about a specialist situation - and they prioritise their time, so if you *can* wait until tomorrow, the chances are you will.)

Nothing happened. At 21 weeks, I phoned again and explained that pregnancy is only supposed to last 40 weeks, so the baby was more than half-way here, I was having increasing difficulty doing things and that while I appreciated I wasn't an absolute emergency, I really quite urgently needed to hear from a social worker if we were going to avoid me AND the baby becoming one.

Finally, two days after that, a Duty Social Worker called me. He'd opened my file; he'd seen that "my" social worker had been intending to start off a number of referrals as soon as I'd had my 12-week scan but that she'd gone off sick before this could happen; he agreed to authorise and send off those referrals, marked as Urgent in an effort to catch up to where we should be. However, "my" social worker was expected back within a couple of weeks, so they couldn't transfer me to anyone else's caseload or conduct a reassessment.

I was really pleased that things were moving at last, but of course that was when the challenges really started. Because I had no social worker to oversee things or fight my corner, I had to try and comprehend the whole system myself. First getting past gatekeepers, then being referred on to yet more people or organisations, and trying to keep track and make sense of who everyone is, when I see them, what their remits are... I'll go into more detail in another post.

At 22 weeks, someone from Independent Living saw me and agreed to formally refer me to be reassessed by a social worker. At 23 weeks, she phoned me back and told me that the referral had been postponed because they wouldn't transfer me to another caseload, because "my" social worker was off sick but would be back in two weeks. Does this sound familiar? Can you guess what happened? That's right, two weeks later (25 weeks) I was told that "my" social worker was still off sick! But, obviously, they couldn't transfer me to someone else's caseload, because she would likely be back in two weeks!

*headdesk* *headdesk* *headdesk*

Thankfully by this point my list of "two weeks" was long enough that it was conceded I could be reassessed the following week by a Duty Social Worker for my third trimester needs. Her findings would be submitted to a panel who would decide what help I would get.

I honestly felt sorry for that Duty Social Worker. I think like many social workers she went into the profession wanting to make things better for people, but... she was visibly stressed and very disillusioned. I had prepared notes ahead of the meeting with an outline of the sort of bare-minimum support I felt I would need. The moment that has stayed with me is the moment when she sighed and said "I don't think you'll get this. Do you really want me to ask?"

Outwardly I replied that yes, I wanted her to ask, because if she didn't ask, then I definitely wouldn't get it!

Inwardly I curled up in a terrified ball. At 26 weeks, the baby was already wiggling so much that the movements could be felt from the outside, and if anything went wrong, there would be a chance of both of us surviving it. There is no turning back. I'd only started on this journey after getting reassurance that it would be okay - I thought I had been as responsible as possible in ensuring that if I ever did have a child I would be able to provide a decent level of parenting. And now here was a social worker who, in contrast to the positivity of those I saw pre-conception and at 8 weeks, was so doubtful about the likelihood of me getting support that she didn't even want to ask the panel for it.

She also let us know that it would be at least a week before she got the chance to type up the reassessment. In an effort to do something positive, I offered to send her my notes to save her some typing time. Then, before sending them, I spent a couple of days going through them, being rather more specific about the help I need, why I need it, what the risk factors are if I do not have that help, how I am currently struggling/failing to meet this or that criteria because of lack of help. But it is not a positive experience to spend days thinking intensively about the things you will struggle or outright fail to do for your child due to lack of resources that you reasonably believed you would have.

The only other positive I can draw from that meeting is that the Duty Social Worker didn't seem to disagree that I would need the help I said I would. She just feels that with austerity, social workers' requests get turned down more than they might have done a couple of years ago, and she doesn't like it when the panel say "no" to her.

At this stage, there's not much I can do about Social Services other than hope that the Duty Social Worker manages to persuade herself to present my case, and that the panel respond favourably to the information. It will be at least another couple of weeks of hoping before I hear back.

Meanwhile, there's still more than enough to keep me occupied with stairlifts and wheelchairs...

Friday, June 19, 2015

20 Weeks

My 20 week scan was a couple of weeks ago and everything was more or less exactly as it should be. Here's the picture:

20wks annotated for web

The scan took quite a bit longer than the 12-week one, but it wasn't really a hardship gazing at the image of Offspring while a sonographer pointed out all the various organs that were positioned and working exactly as they should be. The baby was awake and wiggling at first, but seemed to fall asleep while the checks were being done on the head and face area, and then absolutely would not move to allow the sonographer to check the kidneys. In the end I was sent to the loo in the hope that it would wake the baby up enough to move just a little, which worked, but only just. That was a good thing too, though, as it enabled Steve to feel a certain amount of paternal pride that his child is taking after him.

The baby was measuring just a couple of days smaller than the exact average, but still well within the healthy/average range. From what we were told, the important bit is that a baby's growth is proportional all over, and a couple of days is neither here nor there.

Of course we're both completely besotted. Every hand or foot was without question the most wonderful hand or foot ever to have been seen, because sure, most babies probably have hands and feet, but no matter what their parents think, Steve and I know for a fact that these hands and feet are just cuter.

And here's the outside view at 20 weeks:

bump at 20 weeks

(I decided to ditch the leggings-and-vest combo for the photos. It made me too self-conscious and it's not like the internet really needs another exact sequence of matching bump pictures. It's also not like there are any other photos of me while I'm pregnant, so I'd rather that I'm happy with the ones that do exist.)

20 weeks marks the half-way point of pregnancy and we might have made a bigger deal of it if we hadn't spent the last few weeks grumbling along with a horrible cold, which was not only giving us bunged up noses and sore throats during the day, but also causing us to more or less continuously wake each other up throughout the night with coughing fits. It's better now, though, so I'm trying to think more about the end of this month, which will mark the point at which, should this baby try to appear early, it would be considered viable and have a chance of survival outside the womb.

Sunday, May 31, 2015

Wee!

Someone once told me that their overriding experience of pregnancy was going hither and yon with a handbag full of wee, ready to give to whoever asked for it next.

At the moment I'd say there are quite a few things registering rather more strongly on my radar, but I couldn't go so far as to say she was wrong.

Certainly the approach to wee seems to be quite different when it comes to obstetrics, compared to any other department I've dealt with. In obstetrics, it's all about the wee. Seriously. You must turn up to every appointment with a urine sample, or a full bladder, or both. I have an appointment coming up to discuss birth options with my consultant, but I had to contact the hospital to find out what the appointment was for and who it was with, because the only details anyone saw fit to include in the appointment letter were the time/date/location and the necessity of bringing wee. I'm not even sure why wee would be relevant to that appointment. Maybe it's just a standard line on their appointment letter template.

The response to a sample is different too. In other departments, you slightly shyly proffer your sample and say something like "do I give this to you?" and the doctor or nurse either says "yes, I can take that," or "no, hang on to that and give it to (person)." In obstetrics, almost without fail, the response is a gleeful "ooh, yes please! We love wee!" and do you know what's really upsetting? That's not even bothering me any more.

Saturday, May 09, 2015

16 Weeks

Time for another monthly bump pic. Well, 4-weekly. Ish. Week 12 turned out to be almost-week-13 and this is week 16-and-a-bit. It seems so strange to think that I'm almost four months along. Every day of it has taken an age and yet part of me is thinking I can't have been pregnant that long! Steve's preferred method of tracking our progress is a percentage counter to the due date, which today tells us we're at 40%, which seems very substantial. Another alternative would be to take the long view - I'll likely live another fifty years, and worry about my Offspring every single day of that, so right now, at 16 weeks pregnant, I'm not even 1% of the way through.

Nevertheless. I'm actually going to post two pictures. Here's the official one:

DSC05654

... which I don't really like. Taking these pictures against the bookcase and wearing the same outfit seemed like such a good way to definitely be able to see the progress. Instead, the outfit makes me feel self-conscious about my body and I think that's the first thing that comes across in the picture. I'm overweight and most of that weight is in the areas least flattered by leggings. The leggings were a sensible choice in that I should be able to wear them all through pregnancy but I don't want to be wearing that worried, how-enormous-does-my-bum-look grimace all the way through the record of my pregnancy.

I prefer this picture:

DSC05656

... where you can actually see that there *is* a bump now. It's not huge, granted, but this weekend is the point at which my favourite jeans no longer fit comfortably and I have two small but definite stretch marks. Bumpage is definitely there. Also, while it's still not a photo that makes me look good, I'm giving the bump a cuddle and genuinely smiling about it. So in many ways, this is a much more accurate bump picture, if we're going for experience rather than pure size.

Hopefully there will exist some other happy pictures of me while I'm pregnant. A friend very kindly passed along some really nice maternity clothes which feel comfortable to wear and make me look pregnant rather than fat. There's supposed to be a lot of growing over the next few weeks, so my hope is that we go on plenty of little jaunts out and about in the sunshine during the early summer. We have a trip to Eden coming up as well.

Meanwhile I need to decide whether to give up on continuity and do the 4-weekly bump pictures in different outfits (and possibly places), or if I declare that I've Started So By The Gods I'll Finish Dammit with the vest/leggings/bookcase combo. Input welcomed!

Friday, May 08, 2015

Testing

The other day I blogged about my private scan, and the joy of it, but also my misgivings about the way private healthcare uses fearmongering to boost profits - in this instance, by telling pregnant women that "time was running out" for them to get tests not routinely offered by the NHS.

These misgivings are reinforced when I'm on forums with parents-to-be from other countries who are dependent on less-than-stellar private healthcare packages and are having to approach all tests from a position of "can we afford it?"

So I feel wonderfully lucky to have the NHS, offering testing and screening and scanning and measuring for all sorts of things. Obviously (I hope obviously) I'm entirely against the idea of aborting a foetus for having a disability. On the other hand, I think it's a damn good idea to know if there's a treatable medical issue endangering the life of the mother or the baby. On the other other hand, screening tests are imperfect (screening determines only likely/unlikely, secondary testing is required to obtain a yes/no) and being told your pregnancy is "high risk" for something can cause a great deal of often-unnecessary worry. On the other other other hand, I can really see the logic of being able to research and prepare ahead of time for a baby which will have complex needs from birth...

It's an incredibly tangled and emotive issue, and one that it's very difficult to discuss without encountering distressing invective about disability, abortion, women's rights to make decision about their own bodies, shaming, blaming, name-calling and all sorts of other unsavouriness.


Weirdly, for me the decision has been made vastly simpler by being disabled. I know ahead of time that when I get past, say, week 38 of 40, I'm going to become difficult. At the absolute very minimum, once the baby is born and I'm on the ward, I'm going to need my wheelchair and/or walking frame beside the bed - and every disabled person reading knows that hospitals don't like you bringing your own (I think it's a philosophical problem as much as a space and hygiene issue). When I use that wheelchair or walking frame to get to the loo, I'm going to need the staff on the ward to understand that it's not appropriate to tell me that having had a baby doesn't make me disabled and to just walk properly. I may have to determine whether my PA counts as a visitor because while I'm wiped out I'll need advocacy. There's all sorts of stuff, none of it insurmountable, but all of it needing to be addressed.

So, up until the point at which I really really need to raise my head above the parapet and start being (what I fear will be construed as) fussy and awkward, I feel I should be as compliant as possible with the non-invasive testing. Build up my credit, sort of thing. For every single test, the accompanying leaflet reminds you that you have the right to refuse, but I feel that it will serve me better not to have "refused testing!!!" or worse, "has internet access" written on my notes, you know?

Wednesday, May 06, 2015

Private scan

A bit of a catch-up post, this one.

I never thought of myself as the sort of person who would opt for private healthcare. I think the NHS is a brilliant service. The pregnancy related care I have received has been wonderful, and at very difficult and distressing times of my life I have appreciated that I'm not getting a hefty bill alongside my bad news. Add to that the number of people I know whose lives have been improved or outright saved by the NHS, and... I love the NHS. It's large, imperfect, underfunded, understaffed, and awesome.

The first twelve weeks of pregnancy, dated from the first day of your last period, are when the chances of miscarriage are highest - as high as 30% for week 5 (that's the week you miss your period), then the graph curves down, 25%, 20%, 10%, until you get to week 12 when you're down to 1 or 2%. Unless there's a good medical reason to do an early scan, such as starting to bleed or being in a car crash, your first regularly-scheduled NHS scan happens when you are between 11 and 14 weeks pregnant.

By week 8 (three weeks after positive pregnancy test), Steve and I were feeling anxious, but not quite worried enough to start asking for an early scan. I didn't have any panic-worthy symptoms and it must be said that the waiting room of the Early Pregnancy Unit, populated as it is by nervous and upset women who are facing, going through, or have been through a really horrible experience, is not a place anyone would choose to be. And yet, the idea of waiting another 3-6 weeks before we would learn whether I was carrying a viable embryo, or a dead one that would need intervention to eject, was quite nerve-wracking. To make it nice and circular, I then started to worry that if my embryo was healthy then I might be harming it simply by fretting.

Week 9, we caved. The grand sum of £85, which we are currently privileged to be in a position to afford, would buy us a viability scan at a small private clinic a couple of towns away. I squared it in my head by classing it, not as "healthcare", but as an "extra". Sort of like how physiotherapy at a hospital is healthcare for medical reasons, and a massage at a beauty parlour, while having some superficial similarities, is an extra to help you relax.

I had my scan at one day shy of 10 weeks, and Steve and I still consider it the absolute best money we ever spent. Of course we might have felt differently if the outcome had been bad, but as it was... within a few seconds the sonographer had found the heartbeat, which we were able to hear as well as see, on the screen, both the little white shape of the heart itself pumping away, and a more familiar-looking chart of the spikes. The stress just melted off both of us. There followed about two minutes of just watching as various parts of the embryo, placenta, and my innards were shown to us and measured while the sonographer kept repeating wonderful, wonderful phrases like "that all looks fine" and "that's exactly where it should be" plus of course "there's definitely only one in there". Then - possibly in response to the change in my body chemistry as stress and nerves turned into euphoria and relaxation - the embryo started to move, really quite energetically. Arms and legs wiggled about, the head moved, the spine flexed, and Steve and I just sat/lay there utterly entranced.

To make it even better, the fee included not only a few printout pictures, but a DVD which was basically a screencast from the sonographer's computer for the whole scan. We must have watched it dozens of times in the first week, especially the little wiggly dance - if it was a VHS tape that segment would be getting worn out by now.

But then... then, they had to go and remind me why I love the NHS. In the folder with our details, DVD and pictures were some other leaflets. One was a price list of the other services they offer, which is fair enough, they are after all a commercial enterprise. Some of the others though, had pictures of pregnant women with clocks superimposed on their bumps, and dire warnings about how such-and-such a test is not routinely offered on the NHS and time is running out and if you're a responsible parent then really you should be paying hundreds of pounds for these extra tests! For me, this was just going too far and was everything I dislike about private healthcare. Letting me pay money to ease my own non-substantiated fears was one thing. Trying to introduce new fears to make a quick buck, with the added element of shaming those who can't just splash a spare £500... it left a really nasty taste in my mouth.

But the DVD...! I just keep coming back to it. My NHS scan at 13 weeks was every bit as wonderful in terms of seeing the foetus, and the room was comfortable, and the NHS sonographer was friendly and skilled and explained to us all sorts of interesting things, but while we happily paid the £10 for some printout pictures there was a fervent wish that we could take footage home to watch again and again. At the moment Steve and I are trying to decide whether we look into getting another private scan done at some point. We're just not sure if we'll be able to explain that no, we're not looking for testing or diagnosis or gender or anything that specific really, we just want another bit of footage of our offspring waving and the little heartbeat pulsing.

Friday, May 01, 2015

BADD 2015: Progress

Blogging Against Disablism Day, May 1st 2015

Written for Blogging Against Disablism Day 2015.

Years ago, I participated in BADD 2009 with this post about an offensive blog comment I had received. The commenter had noticed that, participating in a Bucket List style meme that was going around at the time, I'd mentioned that having a child was among the things I would like to do. She felt it her duty to inform me in no uncertain terms that it would be "cruel" of me to inflict my "seriously broken" self on a child and instructed me to "stay on birth control and accept (my) fate" of not being a parent.

It wasn't the first time I'd had to put up with that kind of garbage. In the earlier years of my illness, in an exchange I've never quite managed to get over, my sister had somewhat triumphantly told me that now I was sick I would "just have to give up" on my lifelong hope to one day have a family. When I made a slightly stunned effort to assert that disabled people could still have children and that as long as I secured the right support it would be possible, suggesting an au pair as just one potential option, my mother joined in with the marvellous line "why have kids if someone else is going to raise them?"

After having to deal with attitudes like that from my own family, I wasn't exactly going to be left devastated by a semi-anonymous blog commenter. On the contrary, having the attack coming from someone I didn't know meant that I finally had a chance to reply without worrying about the feelings of the person who'd just insulted me. But I was still a little bit concerned about what sort of response there might be, considering how BADD posts tend to get rather more exposure.

The support from the online disability community took my breath away. People were angry right along with me. Directly and indirectly, via comments and emails, parents shared their stories - not sugar-coated success stories or bitter tragedy ones, but real stories including the hard work AND the joys and achievements involved. The BADD archive, for every year since 2006, offered a category of posts on "parenting issues", both for disabled parents and for parents of a disabled child. Not to mention all the posts in other categories, written by disabled parents but not about parenting!

I felt more encouraged, rather than less. I learned about all sorts of little tricks, suggestions, ideas, and resources (although if anyone can suggest an active non-Facebook replacement for the sadly now defunct Disabled Parents Network, it'd be a help). I was able to access publications written for disabled parents telling me what sort of support I should be able to expect from Social Services, and how to go about accessing it. Sure enough, I spoke to Social Services and got written confirmation that I would be supported in my parenting role. I'm also pleased to say that having this more concrete grasp of what I'm doing appears to have enabled me to put my family's fears and prejudices to rest.

In October 2015 Steve and I are expecting that baby. We are confident. Our baby, our so very wanted baby, will arrive and will be loved and cared for, and part of that is due to the hope and practical help that BADD unlocks.