Tuesday, May 24, 2016
This is Jamie's second year in the photograph; last year of course he was present in bump form, and then Steve printed out one of our scan pictures to "actual size" on an iron-on t-shirt transfer.
We wondered whether to have Jamie in the anniversary pictures as we're quite sure that, over the years, we will have anniversaries where he isn't present - perhaps with a babysitter, perhaps being a grumpy teenager who refuses to participate because he thinks his soppy parents are sooooo embarrassing, perhaps at university, or away with friends on holiday, or any number of other possibilities. All that is fair enough, time passes and things change. Right now, though, Jamie is at the absolute centre of our lives and our relationship, so to create an image featuring both of us and not him... it wouldn't be real.
Saturday, May 14, 2016
The tent was supposed to be the next phase after he grew out of the downstairs moses basket. We wanted somewhere safe for him to nap during the day, that wouldn't depend on me having support available to bring him up and down stairs. We also wanted something I could get him in and out of unaided, and where I could leave him at least moderately safely on his own for very short periods, for instance while washing my hands after a nappy change. The floor of the tent is at floor level, so no rolling off it, and it has a soft but permanent rim about ten inches high, so it's not easy to roll out. The whole side can be zipped up from outside if necessary, with one white mosquito-net layer and one darker sun-blind layer.
Success has been mixed. He doesn't often sleep in the tent. Even if he's already snoozing in my arms or the car seat, lying him down in the tent is a pretty sure-fire way of waking him up! With the advent of his mobility, we've gated off a big section of the room where he's safe enough for those brief moments, so it's no longer used for containment either.
On the other hand, he does like it in there and sometimes even asks (non-verbally) to go in. It's a little chill-out space of soft light and pastel colour. The only toys which live there are Teddy, and the Crinkly Lion that you can see in the picture - or to put it another way, one thing to cuddle and one thing to chew. It's a space where he can examine his hands or his feet without distraction, and calm down and collect his thoughts when the world has been a bit too stimulating for a bit too long. Steve and I have been known to feel rather envious.
Saturday, May 07, 2016
In this picture Jamie is wearing an Ella's Kitchen Spinach, Peas and Pears puree underneath his first taste of strawberry yoghurt. Strangely, or perhaps not, he seems to prefer the spinach.
There's not much to report, really. His spoon skills are doing nicely. My policy at present is that I will keep loading the spoon until he stops reaching for it and shoving it in his mouth, but he can only have bowls once they are emptied. He has been given finger foods - overcooked and cooled sticks of carrot, apple, broccoli, etc - but these are so far being treated with extreme suspicion.
To be honest there have been far more exciting things going on this week as Jamie has really nailed rolling and continues to experiment with his commando crawl. The trouble is that I don't get much opportunity to photograph that stuff. If he's not asleep or harnessed into something (sling, pushchair, high chair, car seat) then he's a bit of a blur. Maybe I need to ask the PAs to start doing photographs?
Monday, May 02, 2016
Further to my last post about some of the practicalities of disabled parenting, the big question seems to be about managing fatigue.
It must be said that Jamie is an astonishingly "good" baby. Still a baby - he cries, he fills his nappy, he vomits, he decorates his entire head with just one spoonful of puree - but he smiles, he cuddles, he plays, he likes being read to, and barring illness he usually manages to sleep through the night. I've been involved in family life with various babies since my teens and I have never known a child like him.
Babies don't read the Equality Act, though. Not even babies like Jamie. They'll accept all sorts of things as normal, but they don't make reasonable adjustments or allow you to work flexitime. Nor is there time off sick - the times when you are ill from colds and tummy bugs, the baby will also likely be ill from the same problem and that will be when they need you to work even harder. And there will be no opportunity to negotiate a reduced workload if it turns out you can't cope. Even asking for help will be a gamble where the worst case scenario is not simply that you don't get help.
I don't say this because I think readers don't know it, or because I'm trying to put disabled people off parenting. I just know that on social media it is nicer to focus on the positive and I don't want to give the impression that I'm finding things easier than they actually are. I'm in an exceptionally privileged set of circumstances with a remarkable level of support, and I'm tending to only report the good bits. I know some people are reading my parenting experiences with half an eye on whether they too could pull it off. I would urge those people, and their prospective co-parents, to really really think hard and research and Talk With Actual Words and come up with backups to the backups to the backup plans before going ahead. I love that I might be able to give you confidence but I don't want to give you false confidence, if you see what I mean.
Of course managing fatigue is a big problem. And as Mel rightly recalled, a condition of my care package is that my PAs are absolutely not allowed to do any parenting. Nor is my funding for them to babysit while I rest. On top of which, part of the reason why I got such a good care package is because my husband works more than full time and there aren't any family members living near enough to help out. So how am I coping?
That's a big question. The short answer is that we're trimming spoon expenditure in every way we can. But that's not a very helpful answer, so here's some (not all!) of the things that make a difference.
The main factor, of course, is the PA support, which doesn't cover childcare but does encompass "supporting me in my role as a parent". At the most extreme end of that, there have been times - I wish there hadn't been, but we all knew it would happen, that's why we asked about support before we dared try to get pregnant - where it's been a case of someone lifting Jamie on to me, and then staying there with their arm around my arm around Jamie while he feeds, reassuring me that they won't let me crush or drop him. Or if I've got temporarily stuck, if Jamie's napping or playing happily then we leave him to it but if he starts to grizzle then the PAs don't comfort him directly, they carry him to where I am and hold him securely face-to-face with me so that I can try to soothe him with eye contact, smiles, stroking, singing and so on. In this way, Jamie's practical and emotional needs are met and there's no confusion about who is fulfilling the parental role.
On a less dramatic level, the PAs continually support with all the little things that I can do once or twice but can't do safely, reliably, repeatedly, or in a timely manner. For instance, I can (caveats apply) hold Jamie in my arms and shuffle on my knees from one room to the other. If the house is on fire, we will escape! But it becomes more difficult and thus riskier every time I do it over the course of a day... so it's the PAs who carry Jamie from room to room alongside me, and I save my "once" for when it's needed.
The remit of the PAs to help me with tasks I have to do as part of my role as Jamie's parent includes some tasks I had to do but did not get help with pre-parenthood. For example, on my previous care package, I didn't get help with housework. But my role as primary caregiver and stay-at-home parent to a very young child who exists mostly at floor level and puts everything in his mouth, requires me to keep his home acceptably clean and keep on top of things like laundry, dishes, grocery shopping, food prep and so on. As such, the PAs do, or help me to do, housework that I previously had to neglect or spend hours struggling to get done on my own. The side effects are that a clean house is a clean house for me as well as for Jamie - and the time and spoons I might previously have spent trying to keep the house clean are suddenly available for me to spend on Jamie.
Some of it is that I'm no longer overdoing energetic things for a prolonged period of time to maximise my use of a one-afternoon-a-week social care arrangement, spending that one afternoon hugely overdoing it whether I was having a good day or not, because that was the afternoon I had booked. With daily support, I can wait for a "better day" for intensive activities, and as soon as I feel like I've had enough I can stop, in the safe knowledge that I can resume again once I feel up to it. In short, with this level of support I can manage my spoons much more flexibly and don't feel compelled to boom-and-bust to get things done, with the result that I am doing more.
Planning and preparation has a huge part to play as well, on the daily level. Fabulous as my care package is, it's not 24/7. So while someone is here, we do everything we can to try and ensure that things run smoothly while I'm alone. Change stations are kept stocked, water bottles refilled, medications are timed for maximum effectiveness at the times I'll be most in need. We have lists!
And, I would be lying if I said that common humanity wasn't a boon. The PAs, for all that they aren't childminders, are additional adults in the house and like any adult they would not willingly allow a child to come to harm. While it's not the PAs job to soothe or entertain Jamie when I have to leave the room (and of course I do wait until he's napping or playing contentedly, and I don't hang about unnecessarily), I can feel confident that they will intervene if he's in danger - I don't have to endanger or exhaust myself rushing to get back in a bid to ensure his safety. Even Social Services, for all the warnings about how the PAs must never have childcare responsibilities, agreed that it was nevertheless appropriate for them to attend the infant first aid course with me in their own right.
Beyond the care package, a big factor for me is increased spoon availability due to equipment. The stairlift has made an enormous difference, I'm not spending endless spoons scrambling up and down the stairs several times a day to use the loo. The powerchair does take less effort than the e-motions, even if it is rather more cumbersome and less versatile. Having "my" car, even though I cannot drive it myself, means not having to work around the availability of accessible taxis. We also have had some baby equipment that has helped, most notably the bednest crib which meant in the first few months he could be brought into our bed for the night feeds and put back once he was full, with neither the difficulties of lifting nor the hazards of co-sleeping.
Conversely, some of it is the joy of no equipment at all. I'm fortunate that I've been able to exclusively breastfeed Jamie for the full first six months as recommended, and am continuing to do so while we introduce other foods. One of the amazing things about breasts is that, as a rule, you don't have to sterilise eight of them per day. You also don't have to juggle a screaming baby while you wait for them to warm up, and even if plans change you never worry about whether you've got a spare one in your bag. It's not an option for everyone and of course it does mean I'm on the hook to wake up and attend for every feed, but it's saved me no end of trouble. We had ideas about Steve giving me occasional breaks with expressed milk from bottles, but Jamie's not a fan - so the fuss of pumping and sterilising and then having to step up and do a five minute comfort-nurse afterwards anyway outweighs any benefit I got from an extra half hour lying down listening to Jamie vocalising how unimpressed he was about being offered milk that wasn't direct from source.
Some of the best advice the OTs gave me was to balance aspirational Perfect Parent ideals against the time/energy/effort cost. A specific example was that, when a particularly bad nappy explosion occurs, there's no prize being given for getting a poo-covered vest off the baby and ending up hurting yourself in the effort to contain the mess, having to do an unscheduled bath, spending ages at the sink trying to scrub the vest clean... remember that the option is there to just get a pair of scissors and cut the vest off and bin it along with the nappy. It's not a solution for every change, it's not eco friendly, it's a waste of money, but in certain circumstances it'll be the most sensible thing to do. See also: disposable nappies vs reusables, pre-packaged foods vs home cooking, having the TV on, car vs walking, and every other guilt-stick that the world uses to beat parents.
The advice for coping with fatigue in all the books/websites/emails/etc is "sleep when baby sleeps!" and this is one of the most upsetting pieces of advice there is, because the baby will taunt you by managing excellent and uneventful sleep at the times and places when you cannot take advantage. What makes this advice even more annoying is that, if you do get the opportunity, it's a good thing to do. There's a big temptation to go "aha! The baby is asleep, I shall Do Things!" but, in my limited experience of the last six months, if the baby is having a nap while you're at home, the best thing to do is to lie down, cover your eyes and nap. If you can't nap, do a breathing/meditation exercise and at least rest your eyes and body. If you can't manage that either, because of pain or hormones or waiting for the health visitor or because you only just woke up and are temporarily not tired, then eat a good quality chocolate and really savour it, or rub moisturiser on your arms, or caress a cup of tea with both hands, or do something else that feels like down time. Things that need an awake brain can be done while the baby is awake. Even if a visitor is willing and able to mind the baby while you sleep, it can be so hard to relax enough to sleep if you can hear the baby making any noise at all - it's not that you don't trust your guest, it's a biological thing. A better solution is if a visitor is willing to play with the baby in the same or the next room while you catch up on your Awake Things - then when the baby sleeps, you'll have fewer things on the "I can't nap because I've got to..." list.
I had intended to get this post done in time for Blogging Against Disablism Day. As it is, I'm still not sure it's "done" but then it's such a big question, it could never be fully answered. Hopefully what's here will help someone, and I can answer more questions about what I've missed in another post!
Sunday, May 01, 2016
The reason it's been chosen as this week's photo is because this week, Jamie started to get that bit more mobile. He not only rolls confidently, but this picture is after the first time he managed to, well, not quite crawl, but wriggle and drag himself around.
And this was his goal. He started with his body entirely on the play mat - it might only be a few inches that he managed to move, but he managed it! I am incredibly proud that the first time he exercised his ability to move independently, he was going for a book.
Sunday, April 24, 2016
Sunday, April 17, 2016
"I wondered if sometime you might be able to write something about some of the practical issues around looking after a baby when you're disabled? My wife and I are considering having children soon, but I'm a bit concerned about how I will actually manage a baby with my level of fatigue (I have the same diagnosis as you), and with a wheelchair (how do you even push a pram with a wheelchair?!)."
I really want to answer this, but where to even begin...
Specific questions are easier and the query about pushing a pram with a wheelchair is simple enough to answer. I don't.
Every so often someone will send me a link to a product (which invariably turns out to not be a commercially available product, but a student's one-off engineering project or similar where they're trying to boost their grade on the Helping Those Less Fortunate ticket) that's a sort of pushchair that clamps onto a wheelchair. It's an interesting idea, but I've yet to see one that looks practical for any kind of day to day use.
If we're somewhere like my GP's surgery, where there's parking directly outside, seats inside, and not a lot of walking required, then I walk leaning on the pushchair, but most of the time when I'm out and about with Jamie he's in a sling on my front.
To find out about slings, I googled for my local sling library. The lady who ran it was very welcoming, and we had a very useful consultation session trying on different kinds of sling with a doll, and then with Jamie himself. We considered my ability to put the sling on myself, as well as what it was like once it was on. Then I was able to borrow my preferred type of sling for a fortnight to see how it worked for me "in the real world".
The answer is, it works very well. The time it takes me to sit in the back of the car, fish Jamie out of his car seat, shuffle him into the sling, and be ready to go, is about the same time as it takes Steve or my PA to pull out the ramps and get my powerchair out of the boot and round to the side of the car.
He likes being in the sling, especially while we're moving, and often falls asleep in it. Staff at my local Sainsburys have been known to dash over to say hello to Awake Jamie when we've only just entered the store, because he's almost always dozed off by the time we reach the checkouts.
It was also quite useful at home while Jamie was smaller and sleepier, because it meant he could snooze while upright (reflux issues meant he wasn't always a fan of lying down, especially straight after a feed) and I could use the computer, which among other things allowed me to keep on top of the admin of my Direct Payments.
Drawbacks: reduced upper body mobility is the biggie. I still have use of my arms but not as much reach, and twisting around in the chair to get at stuff in the backpack is right out.
Eating and drinking with a baby strapped to your front can be tricky at best and potentially dangerous at worst. My experience so far is that while the baby is pre-high-chair, you either need to have a pram/pushchair to put him in, or you need to be with someone who's happy to take turns for who gets to eat vs who holds the baby.
It can get a bit heavy after a while. It's very inconvenient if you've gone out intending to try clothes on. And personally, I haven't felt comfortable to try going to the loo while wearing him. So if I'm going to be out for a long time, or as above if I'm planning to try on clothes or stop for food, then I ask my PA to bring the pushchair (which is also useful for stashing shopping). It's really important to me, though, that as a rule we don't have a PA pushing Jamie while Mummy trundles off ahead or behind.
Hopefully this helps someone... more questions welcomed, although I can't guarantee they'll be answered!