29/52 2018

Week 29
16 - 22 July

A slightly bittersweet week. Jamie loves to "help" with vehicles of any kind and Steve includes him with the regular maintenance jobs like checking tyre pressure, topping up the washer bottle, and as pictured here, checking the oil levels. He stands patiently with the kitchen roll, and squints at the dipstick with intense concentration.



But in this picture, Steve and Jamie are checking the oil on Steve's beloved motorbike... and the following evening, after more than twenty years riding, Steve had his first crash.

Thankfully, Steve is a great believer in wearing All The Gear, All The Time, heatwave or otherwise. Helmet, jacket, body armour, Kevlar trousers, proper boots and gloves, meant he was able to walk onto the ambulance unaided with nothing worse than a broken collarbone and some spectacular bruises. The bike... it's obviously damaged, but until Steve is recovered enough to heave it up onto the centre stand (bearing in mind the handlebars were smashed) and inspect it properly, we don't know if it's reasonably repairable or not.

Jamie is doing better than we have any right to expect of him, when it comes to being gentle and careful and only having cuddles on one side of his daddy.

50/52 2017

Week 50
11 - 17 December

The first day of proper snow, Jamie hated it, largely because it was still falling and getting in his face. On the second day, he was adamant that he Did Not Want to go out.

So, my PA offered a Plan. She would go outside and play right in front of the window and attract his attention. I would wait for him to get interested and then wrestle the snowsuit onto him. Then she would open the door and he'd be able to simultaneously break free from me and get a better look at what she was doing and wouldn't realise he'd gone out in the snow until he was out in the snow.



It worked like a charm and he had a great time.

Bonus video footage:

48/52 2017

Week 48
27 November - 03 December

Steve had to get up silly-early for work this week, and while Jamie usually stays asleep, on this day he woke up, and it's hard to persuade a two year old that it's still night time and he should go back to sleep when he's had nearly a full night's sleep and can hear morning-type sounds.

As a result, the nap that usually happens in the afternoon, happened in the morning, and by 2pm Jamie was fully rested, fully fed, and ready for whatever the world had to offer on this muddled-up day.



What it offered was this: the really good park in Stratford, practically empty and glowing with a winter sunset. We stayed until dark (about 4pm, sniff) and even then he didn't want to leave.

Yes, he did end up having a second mini-nap.

34/52 2017

Week 34
21 - 27 August



I bought Jamie this lovely little beach/water play outfit. Lightweight, UV resistant, suitable for wearing in and out of the water. Sadly what with one thing and another, this was the only time he wore it - at a water playground where most of the water appeared to have been switched off. Not that he minded, there were still plenty of things to twiddle, but he was a bit bemused by having his clothes changed first!

24/52 2017

Week 24
12 - 18 June



Jamie's confidence and physical ability are continuing to expand, which is an absolute joy to watch. Admittedly his attempt at this cargo net was not entirely successful in terms of getting to the top. The difficulty is a philosophical one; instead of tackling it incrementally and climbing one row at a time, he wants to make a single big step of about three rows and then feels frustrated that he doesn't have the leverage to bring the rest of his body up. As soon as he wraps his head around the theory, he'll be away.

07/52 2017

Late hitting post again...

This picture marks a great leap forward in Jamie's eating abilities.



Up to the age of six months, Jamie was exclusively breastfed. Then we started to introduce purees on a spoon. We had a rhythm going where we would load the spoon and pass it to Jamie, and he would pilot it to his mouth or thereabouts (as in this post, it was messy but it worked).

Next was finger foods, and then something unexpected happened - he started refusing to hold the spoon and would do any amount of gymnastics to just get his mouth directly to it instead. I consulted the weaning expert at the children's centre and she reassured us that some kids were like this. Having got to grips with shoving finger food straight in his mouth he was regarding the spoon as an unnecessary complication in the eating process. But she seemed quite relaxed about it and said we should just keep eating with cutlery in front of him, let him have the spoon if he wanted it even if only to play with, and not worry.

Well, that's easier said than done, but it seems to have worked. Last week, after several months, Jamie finally reached for the spoon again. What's more, we don't even have to load it any more. He can have his bowl, he can scoop up his food, he can put it in his own mouth at his own pace. He's just suddenly got it, all at once.

Bonus video footage:

27/52

Another Jamie and Daddy week.



We are having rather a bumpy ride these last few weeks, and for Steve that turned into a literal bumpy ride when his car started acting up. It was purchased on price rather than reliability - in fact it cost less than my powerchair, although by now it's cost more in maintenance (to be fair I haven't driven the powerchair several thousand miles so it's not really a good comparison).

Jamie really likes being read to and apparently sees no difference between the Haynes manual for a Honda Del Sol, and Dr Seuss. It's clearly not quite as good as The Very Hungry Caterpillar, but then nothing is nor could be.

9/52

A silly one this week.



Our little family is feeling much better than we were, but still not 100%.

7/52 and 8/52

A late update for week 7 on account of illness. After a couple of weeks of soldiering along with what seemed like every cold going, I developed a full-on chest infection with a few less-than-pleasant extras, and spent last weekend - and most of the last week - in a battle to keep hydrated enough to continue breastfeeding. Steve and Jamie have also been struggling, although thankfully with not quite the same spectacular symptoms, and we're indebted to friends, my PAs, and our lovely neighbours, for keeping us going.

Yesterday seemed to turn a corner though, so I'm going to put last weekend's picture into this weekend's post.

7/52 Bath Time!



Full-on baths are currently a weekly occurrence for Jamie and it's amazing how it's different every time. The first time, Steve was terrified to drown him (we'd agreed in pregnancy that baths were domain of Daddy) and afterwards he seemed to all but disappear into the hood of this towel. At four months though, Jamie is more robust and Steve is more confident. He still doesn't quite have the hang of playing in the water but he does seem to enjoy it.

8/52 Not Well



This is what happens when Jamie is ill. I mean, if he's running a temperature or he can't cope with his snot or something then obviously there's crying and distress and vomit (and Jamie's a bit upset too). But once those things are settled down, it's cuddles all the way, which is cute until your arms give out.

4/52

Slightly late due to assorted family catastrophes... but this week's photo is another sleepy one. Well, sort of.



As you can probably see, Jamie is in fact wide awake.

This week was the beginning of the tentative effort to move from the little bedside crib in our bedroom to the Big Cot in the nursery. Overnight, Jamie will still be sleeping in our room for at least one more growth spurt. But to make the shift as non-traumatic as possible, I planned to start him having late afternoon naps in the Big Cot - overseen by the familiar Ewan the Dream Sheep and Monkey.

So far, it's been limited success only. The nursery is getting established as a safe, comfortable, quiet place, and Jamie hasn't been upset at all. He's cuddled up on the beanbag with me for a feed, then laid down in the cot, and... well... stared at me and Monkey for twenty minutes or more. Quiet. Calm. Content. But very definitely not sleeping! Meanwhile, my mind boggles to see my big strong three-month-old, twice the size he was in October, looking so very tiny-little again.

Noises

Noises that Jamie seems to like:

- Louis Armstrong, Ella Fitzgerald, etc
- The voice of the person on whose chest he is being held
- White noise (eg roomba, Ewan the Dream Sheep)

Noises that don't seem to bother Jamie:

- the doorbell or telephone ringing
- people talking in the same room
- fireworks

Noises guaranteed to wake Jamie up in URGENT and IMMEDIATE need of feeding and nappy changing and a cuddle and oh my goodness the whole world is about to explode:

- the pop of a tube of Pringles
- the scrunch of a packet of biscuits
- the click of mummy's dinner plate being placed on the table

Phew!

Excellent news this week - Social Services have managed to put a care package in place for me as I transition to parenthood.

The remaining three weeks of pregnancy (plus the two weeks of Steve's paternity leave) there's not really any notable change from my existing care package. My understanding is that they are taking the view that if I've survived pregnancy for 36 weeks on my existing arrangement I will survive the rest.

I disagree with this. I have been horribly isolated and largely housebound during my pregnancy, because I've had to abandon my former activities as I've needed to use up so many of my hours on support for/transport to medical and social services appointments and trying to get the baby essentials in place. We've been extremely lucky in that I haven't had the sort of complications that lead to weekly appointments or all-day clinics. I've also been unable to participate in a number of the recommended activities that I had been hoping to engage with during pregnancy, such as swimming/aquanatal, antenatal exercise/social groups, shopping events that offer discounts on baby equipment, etc.

Plus of course, in this final month, my body is drastically changed and the baby is getting noticeably bigger week by week. We took 30 weeks to get to 3lbs, but only another 4 weeks to get from there to 4.5lbs, and by 39 weeks we should be between 6 and 8lbs. I'm huge! I can't lie on my front or my back any more! I don't dare lie down on the sofa while I'm alone in the house because I can't get back up! I need to wee all the time and I haven't got my stairlift yet! There's not enough room in my belly to eat a proper main meal, I'm supposed to be eating several smaller ones throughout the day but I don't have support to do that! If pregnancy is a marathon, the last bit of it is seriously uphill compared to the previous months!

The failure/refusal of social services to properly support my needs during pregnancy has caused a loss of freedom and has had a documented impact on my mental health (as well as, to a less dramatic extent, my physical health), and that baby and I have "survived" has had more to do with luck and favours than any idea that my support package has been adequate.

However, I have a choice. I can spend the next three weeks struggling to cope AND struggling to fight with social services for resources which, even if I technically win, won't possibly be in place before the birth. Alternatively, I can spend the next three weeks struggling to cope AND trying to focus on thinking the happiest thoughts I can, resting as much as possible, and trying to be ready for what happens once the baby arrives.

And this is the really good news. Once the baby is outside me and Steve has gone back to work, social services have granted me 40 hours per week of support.

It doesn't mean I'll have someone here all the time - Steve works more than 40 hours each week and there's commuting time as well. But if I structure it as two shifts totalling 8 hours a day, 5 days a week, and if I'm careful about making sure that at the end of each PA shift baby and I are safely set up with everything we'll need in the next hour or so to hand, then it will work.

I can feel safe.

Of course it isn't indefinite. The plan is to review it every two weeks (I admit to wondering if this will be two calendar weeks, or a social services "two weeks") and to reduce the package as I recover from the surgery, baby gets the hang of feeding, the medical appointments peter out, a routine begins to develop.

But that's okay. I can go into surgery to have the baby knowing that, at least while the stitches are in, someone will be around to help me fulfil my role as a parent. The first month, which I anticipate as being the most difficult, I will be supported.

I had been so scared that they were going to wait until an actual crisis occurred, that either the baby or I would have to be hospitalised to "prove" that we needed help before any help would be forthcoming. Or, perhaps worse, that the baby and toddler years would be like the pregnancy - baby and I would be trapped at home struggling to do anything more than survive, but that with luck and favours and Steve turning himself inside out we'd scrape along *just* well enough that no red flags would be raised, leading to a situation that never improved and a child who started school with all sorts of disadvantages because I had never been supported to provide them with proper pre-school education, socialisation, nutrition, exercise...

Instead, I have a chance. I *will* be adequately supported for that first month and probably for the second month as well. If I can use that time to engage with the Health Visitors, if I can develop attendance at the breastfeeding groups and other baby activities, if I can demonstrate that I'm eating well, if I can line classes and activities up for 2016, then I will be in a strong position to argue that I need to continue with those things to fulfil my parenting role.

An Update

In my last few posts, I talked about three major obstacles to the baby preparations.

One was the difficulties of getting assessed for a suitable wheelchair. After my last post, a number of people gave me details of companies and charities who had been useful to them. Sadly when I followed up these leads, some weren't able to help, and others were unhelpful by choice, showing me the chairs they wanted to sell rather than the chairs that would meet my needs, and calling it an assessment.

Thankfully, this turned out to be the easiest situation to resolve. The experiences with the "assessors" convinced me that I might as well ditch my fear that going into a mobility showroom would leave me prey to unscrupulous salespeople. I called a local showroom, explained my needs, and arranged an appointment. When I arrived, the salesman had several chairs lined up that did meet my specifications. After a bit more discussion and measuring, I was having a test ride, which included seeing if my favourite one would fit in the car. It did. The salesman then encouraged us to take our time, go home, have a think, and phone him on Monday if we wanted to buy it... and a brand-new one was delivered by him to our house at the end of that week.

I'm gradually getting used to it and I think it's going to meet my needs well.

There was Social Services, where "my" social worker had gone off sick less than three months into my pregnancy. The refusal of Warwickshire Social Services to transfer my case to a different social worker "because she'll be back soon" meant that I had no support at all until my pregnancy was past the half-way point, at which stage it was conceded that the Duty Social Worker team could help out with my case if they had time. I saw a Duty Social Worker at 26 weeks pregnant, but at the time of my last post, I wasn't confident that it had gone well.

At 32 weeks and with my assessment still waiting to be seen by the decision makers, my Health Visitor decided to see if she could intervene in any way. She was told that "my" original social worker was due back in the office any day and would definitely call her back as a matter of urgency. Except of course that this was every bit as much a lie as it had been every time I'd been fobbed off with it during the Spring.

Then at 33 weeks pregnant, for reasons it's probably best not to speculate on, I was officially reassigned to the proper caseload of the social worker who had been the Duty Social Worker who had seen me almost two months earlier. A few days later, I was given a date for my caesarean section which will be at about 39 weeks. I'm not sure if this deadline helped - at 35 weeks pregnant, with four weeks of pregnancy remaining, I think my assessment for additional support during pregnancy was very nearly ready to be submitted to the panel...

On the bright side, the Health Visitor and the no-longer-duty Social Worker are liaising directly now, and I think the midwife might be as well.

Which means I'm free to worry about the stairlift. At the time of my last post, after the delays caused by the absent social worker situation, we had sped through the assessment process thanks to a helpful and super-efficient OT and were awaiting a quote, which arrived, as it was supposed to, just before 28 weeks of pregnancy.

We signed, wrote a cheque for a deposit of over £2,000, and got it back to them next-day. According to the contract, this meant installation would happen within 6-8 weeks - so at the very latest, before 36 weeks of pregnancy (or "well before the end of September" for those of you who prefer a traditional calendar). It was cutting it fine, but it would be okay.

We were quite surprised to then be offered an installation date in the middle of October, or 39 weeks of pregnancy.

There were two problems with that.

One was that it was 3 weeks over the maximum 8 weeks promised in the contract, which really is not good enough when you are forking over five thousand pounds for essential equipment. I signed that contract on the understanding that my stairlift would be installed within the timeframe specified in the contract.

The other was that the date they were suggesting was the actual date for which my caesarean is booked.

After a lot of phone calls (which is always me phoning them, because their inability to stick to their own suggested timescales extends to calling back when they say they will), they have managed to rearrange for installation to happen in the first week of October. This is still breaching the contract - but I don't have the choice to make a big deal about that, because I need a stairlift in place before the baby gets here, and it is too late to get one from a different provider.

I am in my final month of pregnancy. I am supposed to be thinking nice, nurturing thoughts, and doing gentle exercises, and nesting. If I was at work and experiencing this kind of stress, I would be advised to start my maternity leave now. But there's no maternity leave from this situation.

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...

Flowers

One of the unblogged adventures of 2013 was my tomato plants. We got a Heinz Tomato Ketchup-themed Christmas present that included a couple of little pots and a packet of tomato seeds. Having a less than stellar track record with novelty-gift plants, we didn't expect anything to actually grow. We just figured that there was nothing to lose by putting them in soil and seeing what happened.



Amazingly, they grew. In fact they grew beyond all expectation, despite snow and frost and neglect. My PA brought over some of her spare plant pots and some compost so that I could pot them on and they could carry on growing. I feared that the act of breaking them apart from their clumps in the tiny pots would kill them... no, they not only survived, but they continued to grow to the point when they got too big again and my lovely neighbour gave me a few more plant pots, plus some bamboo canes and plant ties to hold them up. I ended up with about 14 plants that grew about 50 decent-sized tomatoes between them, the only slight downside being that for some reason they didn't turn red until October, and ended up becoming soup rather than salads.

Once I had not just harvested but also disposed of the tomato plants, I realised that having the soil and the empty pots was a bit sad, so I went to a garden centre to get bulbs which require a level of wintertime maintenance that I can totally deal with, ie, none. Leaving the pots alone for a few cold, wet months resulted in snowdrops, crocuses, and then daffodils this spring.



The daffodils were followed by alliums and then that was it for the bulbs. The yard was bare again.

A day came, about a month ago, when I didn't have any particular tasks that needed doing and had planned to go have a day out somewhere new with my PA. Unfortunately I really wasn't feeling too well at all so I adjusted the activity level down to: go to a garden centre, find a nice little flowering shrub or something already in a pot to brighten up the yard again with minimal effort. Have a cup of tea and some cake at the garden centre cafe, and then come home. Small quiet excursion that is better than staring at four walls.

Unfortunately it was one of those days when even that was too much. I could barely push from the car park to the cafe. I looked at all the cakes and decided that no, I did not want cake (which is not like me). We got the tea for form's sake but I only managed to drink half of it before I absolutely had to go home. Plants didn't really seem like a priority.

My PA was understandably hesitant to leave me all on my own for the rest of the day. Instead she made sure I was safe and comfortable for a nap, and then went to fetch from her own greenhouse the excess plants that she hadn't planted in her garden. While I slept, she filled my pots with all sorts of plants. I was really touched by the gesture, and as the weeks have gone by, the flowers have bloomed into an ever more colourful display.



There's some white ones starting to open on the big plants at the back, and a few tiny blue ones hiding in the gaps between the pots. There's also scented ones mixed in... I don't know what any of them are called, but having them there to look at is making me so happy.

Coombe Country Park

This weekend Steve and I had a friend come to visit, and the three of us went to Coombe Country Park. It's very pretty and a really nice place to spend a sunny day. Entry is free, parking is the really quite reasonable sum of £1.90, and access is pretty good as these things go. It's "natural" paths rather than tarmac, so not the smoothest of rides, but in the dry weather the easy access route is very do-able and the medium access was what I would describe as bumpy, but possible with assistance.

I needed assistance three times.

The first time was to go over a bridge. The gradient of the slope up was just a little more than I could comfortably manage... I probably could have done it but there's no prizes for hurting yourself when you're with people who are entirely happy to give you a boost.

The second time was to go down a slope where the path had a deep rut all the way along the centre, presumably caused by a combination of feet, bikes, and from the look of it I suspect water when it rains. It was just a bit too wide for my chair to go astride it, and there wasn't quite enough space for me to go down one side of it - especially once nettles, tree roots, patches of loose pebbles, patches of loose sandy soil, etc got factored in. So Steve took my chair down and our friend took me, and we all made it safe and sound to the more solid path at the bottom of the hill.

The third time... the third time was the most terrifying, but was nothing to do with the park itself. It happened, of course, at about the furthest point of the two-mile medium access loop around the forest and conservation area. My left front wheel started making a funny noise. The funniness of noises is a bit subjective when you're talking about hauling a four-year-old cross-folding wheelchair along a forest track, but this was a really funny noise with more than a hint of ominousness. I looked down, and noticed that one of the two bolts holding the left front wheel unit on was sticking out by just over an inch. I put my brakes on, reached down, and caught the bolt as it came out completely and the whole wheel unit flopped.

Things got worse as I examined the bolt and saw it required an allen key. Although I had two pocket multitools with me, furnishing an assortment of screwdriver heads, cutting blades, bottle openers, tweezers, pliers, etc... the nearest allen key we knew of was in the car. Which was at least a mile away over terrain which in one direction was completely unknown and in the other direction would include going up the slope that I'd already needed help to get down.

I got out of the chair again and we all took a closer look to see how much of a field job could be done with the tools we had available. We hadn't lost any bits, and it seemed to have simply untwiddled itself rather than having sheared away or anything, so that was good. Unfortunately, Steve realised that lining up the bolt that had come out would mean undoing the second bolt as well to take the whole wheel unit right off, in order to align the whole thing properly for both bolts to go in together.

Being out and about, especially in nature-type places, always gives me a sort of thrill that people who've never been housebound don't quite get. Look at me, how daring I'm being, not only out of the house, but a mile or more away from the nearest car. Which is great until the point you're sitting on a dirt path, knowing that yes, that's right, you're an actual mile or more away from the nearest vehicle, and trying to stay calm while someone fully detaches a wheel from the object you depend on not just to get back to a place of safety but to move around independently once you're there.

Of course it could have been worse. There were three of us. It was a sunny, dry day with about eight hours until sunset. We were on an "official" path, we had phone signal, a picnic blanket, and plenty of water. I was hardly at risk of life or limb. I trust Steve, and I know that he has more mechanical ability than I do, and I know that he's read the manual, and I know he won't put me at unnecessary risk. I was happy to let him lead the repair effort, and he kept me informed and waited for my permission at each stage. Even so I was only one notch off a panic attack at the point the wheel was entirely removed.

Thankfully my faith was not misplaced. Within a few minutes Steve had got the wheel back on and we were able to move again, albeit somewhat cautiously and with all three of us continually peering at the chair every few minutes. The rest of the path was much kinder, and bit by bit we reached the visitor centre, got some lunch, and then I installed myself on the picnic blanket within not just sight but wobbling distance of the car.

On our return home, Steve tightened up every bolt he could find on the chair, using the Official Toolkit. Apparently most of them were pretty tight and the ones on the right front wheel were basically immovable, so we don't know why the left one managed to work loose.

The bad news is, now the car has started making a funny noise.

Doorbell: a revision

I waited oh-so-patiently for the sugru to set. The full 24 hours, and then an extra night's sleep to be on the safe side and to share the trial run with Steve (only fair since it was him who sourced the doorbell itself and created the mp3 for it to play).

Ha.

The sugru blob I'd made - thick enough to accommodate the smiley face drawn onto it - was, when set, too thick to be flexible enough to push the doorbell-button through it with a single finger. It was also too large in diameter to press the button with it, as the whole red circle couldn't go into the casing.

I haven't explained that well, but the upshot was that the only way to press the doorbell was to hold the unit in your hand and squeeze as hard as possible. Not really practical.

In retrospect, the sugru blob needed to be smaller than the original button, or thin enough to be bendy, or both. At least, unlike with the daffodils I ruined, I know what I did wrong.

Thankfully, the folks at sugru are aware that their products may be used by the inept and hard-of-thinking and give tips on their website for how to remove it. A few minutes of running my fingernail around and around the red button loosened it enough for me to be able to peel it away.

As a happy side effect, the previously white button has taken on some of the red hue from the sugru, making it visible - which was the original aim.



I've managed to correctly spell my name, so that's something.

Timing

I often feel quite frustrated about the poor synchronicity between my physical capacity to do things, my opportunities to leave the house, and the weather. For instance, when it's sunny and I feel good and I want to go out and get stuff done, but I'm stuck indoors. Or when my work desk is clear, the weather is okay, and Steve/my PA/someone else is loading my chair into the car for a gleefully-anticipated trip somewhere, but I feel awful and wish I could go back to bed.

So it's with a sort of wry satisfaction that I am sitting here, admittedly in quite a lot of pain while feeling really quite unpleasant with medication side effects, but listening to the rain thrash down outside, snuggled up in a fluffy jumper and the safe and certain knowledge that the nearest I need to get to going Out There today was this morning when I brought the milk in.

There's not even much I need to do In Here.

I'm dopey and tired and I can't sleep for pain, but at least for once my brain's not filling itself up with all the things I should or would rather be doing.

'Cept maybe make another cup of tea.