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The One Show

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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

 

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

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

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

Documentary

TV DOCUMENTARY LOOKING FOR DISABLED PARENTS-TO-BE

I am a producer at a television production company called Special Edition Films and we specialise in access based ethical documentaries for the BBC, ITV, Channel 4 and Channel 5. We have produced a number of sensitive medical based documentaries on subjects including heart transplantation, cystic fibrosis and treacher-collins syndrome.

We are currently developing a new documentary for about 'Disability, Pregnancy and Parenthood'. The documentary will highlight how pregnancy and parenthood are affected by disability and the trials and challenges that disabled parents face.

 

We would like to speak to pregnant women and new mums who are affected by disability. It is an opportunity to tell their story in their own words and help highlight an issues that needs addressing. If you are interested in talking to us, please call Miles on 0208 960 1446 or email me on miles@specialeditionfilms.com .

 

Looking especially for mums currently affected, and also mothers affected by depression.

Disability Living Allowance

Until you have been there, done it – there’s not a thing that will convey the horror the moment you
realise that form really does need filling in. Now.

For the uninitiated DLA is a benefit rewarded for two categories –  the mobility part and the care component. There are different levels of benefit rewarded to either of those categories depending on need. Not only is this a physically exhausting process to assess eligibility, it’s mentally taxing too. Having listened to people who have reached levels of anxiety that have made them suicidal filling in such forms I do not mention the effort it takes to wade through this task lightly. Nearly all first time applicants are turned down; often as a result of filling in forms without understanding what is required. Sadly, even the most obviously eligible people can fight towards the tribunal stage and still lose. Not only is this soul destroying, it leaves people who need that money to pay for equipment or carers, or special diets, or private medicines, or taxis, or a motability car, or a power chair lose out.

There is no actual stipulation as to how the DLA awarded is actually spent – the list above represents actual costs we have encountered and been grateful to cover with assistance. However, despite having trained as a CAB advisor twenty years ago, there was a huge chunk of time I was eligible and gave up on the process of applying. I once calculated how many thousands of pounds difference it would have made if I’d appreciated I needed to appeal as soon as I was initially turned down. Years later, and many welfare officers, tribunals and paperwork later, I am in a much stronger position to not only survive filling in the form; I’ve a few survival tips to share.

One of my dreads during the pregnancy was how was I going to be able to represent realistic care needs whilst maintaining the abilities I have as a mother. It’s a constant tight rope, and I cannot emphasis this enough; there are unfortunately circumstances in which a parent will require legal assistance to fight both sides of that tight rope, such is the difficulty in defending needs versus defending ability.

My last application was two years ago. I had a welfare rights officer do a home visit (contact local social work department and ask if this is available), and it took two days to fill in the form. At about the half way point we were discussing any difficulties with bathing and I crumbled. Having to talk about how frightening it is to get in and out the shower, or bath, because it’s both exhausting and risks me collapsing makes me cry every year I fill in the darned form. Who wants to confess it’s the most exhausting care need, and that it can require supervision and equipment and sometimes even just plain leaving it to baby wipes or a quick top and tail sitting at the sink to get clean?

The welfare rights officer called it a day, and we began again on day two. So, it’s a bit alarming to see that this year’s form is even longer than it was the last time. Not only that, they have switched sections round and there is an increasing obsession about asking how long each care task takes and how many days a week you need support with it. How long do you take to have a tinkle? What about getting to bed? How long does that take? Do you include the two hours you lay on the sofa too exhausted to get up to go to bed? Or the four attempts it took to go to sleep, so that meant a fresh hot bag, and more painkillers, and then toast, and man alive, now you need the bathroom and your head is filled with obsessing just how long it takes to get there, widdle, and back.

One of the best descriptions for filling in the form I’ve heard is to imagine there is an imaginary fairy around you all the time and what you are recording is what you would ask it to do. That means that although you managed to the bathroom and back by clinging onto walls and furniture, would it be safer and less painful to be wheeled there and back? Then the fairy would make you a fresh drink, and fetch an extra blanket and rub your back till you finally slept. It would watch over you overnight and help you drag yourself out your pit in the morning when your joints have solidified into stiffness and you wander just how many pyjama days are permissible in the week.

The coping mechanisms people use to bypass disability and look as functional as can be can dovetail into oblivion. It can be almost impossible to remember that not everyone has to constantly plan round aching muscles, and a fuzzy head, and impossible legs. Even if you have a partner whose as magic a fairy as can be, it can be difficult for them to give you the perspective required to putting on paper an accurate picture of what it actually takes to make day and night function. It takes an almost clinical coldness in sitting back and trying to see the perspective clearly. What would your life be like if you could leap back into spontaneously running for a bus, and grabbing a sandwich and neither of those tasks being either impossible or hmm, is that wheat free bread or not? Just as well my carer packed those cereal bars or its pass out time, and concrete will be kissed…

This is why I would stress first and foremost – do not fill a DLA form in yourself. You need assistance. At best either a CAB advisor or a welfare right’s officer. This year my husband is filling in the form as I think through the answers with him. That’s after many years experience, and after learning from a large number of trained people assisting me in the past. We survived the ESA form last year, and realised we had cracked how to negotiate our way round lengthy forms asking very personal questions together. It’s not a route I would recommend without seriously considering if it would be wiser to find a more experienced expert. It’s just this time we think we count as having both those qualities.

Even with him writing and me reflecting it’s been a week of work and we are barely half way done. It sadly is such a draining process that many people (realistically) fear relapses in their condition, and diving into depression as they contemplate all they cannot do and expose it to strangers in the form of a many paged novel. I can understand why many people chose not to apply or appeal purely because of how low it makes them feel. It’s frightening to focus on how much an illness has eaten into your independence, only to have the utter humiliation of a tribunal ahead that may or may not succeed.

Who wants to have a doctor visit and declare sometimes such outrageous claims regarding ability you’re left reeling? Who wants to face a panel of people diving into intimate details regarding toileting, or the panic attacks that cripple you, or the pain that stifles everything you do?

It’s like the ultimate anti-interview. In fact, it’s learning from a friend how to focus on how to fill in application forms for jobs and how to store examples ready to respond with in an interview that have crystallised my ability to sum up quickly how my mobility is affected off the top of my head.

It helps to break down each question in the form into a series of tasks. The further I can distance my emotion from describing those tasks, the more accurate a picture I can describe. It helps me to sit back and admit that that magic fairy would be pretty busy 24/7 if I wasn’t already using equipment, and paid help, and careful planning to make the most of the energy I have. It’s been interesting to see my husband’s reactions filling in forms. I’m quite blasé now about describing, well, actually there are times I need transferred from a wheelchair to a toilet and then assisted back. My husband is the one filling up with sadness as I describe the anxiety I have when I am unable to leave the house, or the times we’ve left public places because there are multiple allergens there.

The times I cry still happen, but at least I am not paralysed by grief describing my day to day in tiny sections. Believe me I really feel for you if you get this year’s form as a first time experience. Don’t let my blasé description here depress you, if you are gibbering by page two. It’s still a fricken nightmare, just one that I’ve processed so many times now I’m not overwhelmed like I used to be.

Some people advocate writing screeds and screeds. Personally I have witnessed and prefer bullet point statements. I would describe my walking like this; I am unable to walk any distance without severe discomfort and pain. I use a power chair as I am unable to self propel, however I require a carer to push me in my manual chair when I am too exhausted to use the power chair. Taken a while to get that into a bullet point, but I could recite it in my sleep now.

I do not even bother to fill in the distance I can do and the time it takes. I’ve witnessed people being driven to a straight piece of road and actually measuring distance and time with a stop watch so they can fill that part in. That gives a skewed picture of someone who may have to rest for hours after walking a totally unusable distance. If you hurt, or you need to rest, or you are at risk whilst walking – that might mean yes technically you can walk a bit, but is it useful walking? There are many situations that might mean you are eligible for the mobility component that are not immediately obvious – seriously, do not fill this in without proper advice. Also pride has to go out the window. I’ve watched too many people crawl along supermarket aisles clinging onto shelves in severe discomfort to know that it’s actually very easy to underestimate just how compromised your mobility is. Sadly, there are plenty health professionals out there who add to the confusion and will not support a person as they come to terms with how little their legs will propel.

As I am a wheelchair user, I know some of what I’ve written is too watery to be useful to those who are mobile, but only just, but don’t require a chair. I apologise to those who are reading this longing for the bullet point that sums up their situation in that department. Having had several forms of mobility problems that have fluctuated over the years you have my deepest sympathies.

If the form does not work for you, then you can sometimes adapt where you think it is appropriate. E.g if the yes/no boxes don’t work on a question, we score them out and write N/A - not applicable. Then we write a small bullet point in an appropriate space that we feel summarises with better clarity. It’s a method I’ve seen used by professionals and often avoids confusion. Today we adapted the pages regarding walking outside and requiring assistance, and converted them to convey assistance I need whilst wheeling. Also, please don’t hesitate in describing how your mental health is affected by your physical challenges and vice versa. This is not time to be stoic. Where appropriate I describe levels of anxiety, etc and the reassurance I need. That counts as assistance just as much as being made lunch or having help getting dressed.

Cynical, moi? I think a lot of the form is written by people focussed on catching folk out. And I don’t mean in a fair, ooh lets catch the cheat’s way. I mean in a asking people the same question over and over in different way’s way, till you are so exhausted you convey your best day ever by accident. The general advice is to avoid that at all costs – that you need to convey the worst day you have (on average). I’ve read people argue against this advice, but having listened to many people tell me they are sick, but not as sick as another poor bugger they know, etc, I am convinced that the majority of disabled adults minimise their needs way more than those who would be prone to exaggerate.

It turns out that although I’d hoped we’d licked this form into shape a while ago, just now has been a good time to summarise my situation. I have an infection right now and am suffering various side effects from various medications and there are complications with my pain management that are exhausting me. I’m adapting every game possible so I can play with my baby on the floor, and manage safely. My husband had to work at home for a period of time after an afternoon of complete dizziness, lack of hand co-ordination and my speech phasing in and out of recognition. I feel vile. I’m ever so grateful I have the kind of husband who walks so well with me through those weeks, and who wants to make it better, and who would love to send the blasted form into outer space, if it made any difference. It’s the time where all those carefully squirreled away meals in the freezer are fantastically useful, and I’m glad I’ve worked so hard to be prepared. Despite the gruesome task of form filling, I am also able to focus on other important matters. Our baby likes mummy lying down and playing very slow, very gentle games. He’s not once expressed concern over how many days it’s taken to get my hair washed. He’s far too caught up in chasing daddy hoovering or licking the pram wheels to even notice I’m conserving energy as much as I can.

The whole subject here is enormous – I appreciate any feedback, and other tips to pass on. And if you too are desperately trying to calculate how long your last trip to the toilet took, you are not alone. You are also entitled to hate this blasted process every single bit, and yet laugh with your child as he gives you a sneaky cuddle and sneaky dribble down your back no matter what.

 

One to One?

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

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

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

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

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

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

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

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

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

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

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

Wee Jess

When I was a little girl, I was terrified of dogs. Next door to us at some point lived two large Alsatians, and even now, despite the fact they have long gone, I cannot go past the gate without having to veer far away. I can remember how scary it felt to live next to those dogs, and the memory outlasts the reality of their absence.

Anytime I’ve looked after a child and a dog  has approached I therefore have had to do that thing adults do – make lots of reassuring noises, and calm down every bit of body language that would give away how I once felt. It’s amazing what you will tell a child – no, darling, that doggy is ok, look he looks happy, don’t worry, etc, etc.

Of course now I’m older, the fear has diminished. I prefer cats, because we grew up with a cat as a pet. So at most now I would say, I’m more feline than canine in preference.

At some point in dating my husband it came the time to meet his family. I’ve no doubt both sides were nervous. I knew my boyfriend at the time had in his family both of his parents, three sisters and a small dog. I can remember when I arrived how lovely the dinner was that night, and there was nice china out, and lots of different fruits for pudding. Of course the person to hit it off with is the mum, every time. By the time we’d hit past the pudding and onto teas and coffees, I felt we were bonding well.

My mother in law and I are similar in that we sum up people we meet very quickly. I knew that she would make up her mind in an instant about the lady of her eldest’s choice. As soon as she began an animated story about the birth of her youngest with actions, and we were all crying with laughter I knew that I was in. I was accepted. It’s a trait I’ve enjoyed over the years as being part of the clan – we have spent many times crying with laughter.

Meeting Jess was a highlight of the evening. Jess was a small dog and therefore an easy to cuddle dog. When I sat on the sofa, she snuggled in besides. She had tiny paws. I remember stroking them and thinking she felt more like a cat than a dog. She was obviously the baby of the family and adored by all. Now I’ve met dogs I’ve liked since childhood, but Jess I loved instantly. She felt safe, and she was a darling to spend time with.

She was neat in her features and lovely to look at. And she told me something very important. I think animals sook in the atmosphere around them and reflect the dynamics around them. I’ve seen a cat that was traumatised by the family it lived with. Just spending five minutes with that cat told you plenty – it lived in mayhem.

Jess was warm, friendly, and relaxed and protective. That told me lots about the family I was hoping to become part of. Since then I’ve had many a happy cuddle, and I know she has been a faithful and gentle companion to all my in laws through times of tears of laughter and loss.

The last time I saw Jess she gave JJ a precious gift. She allowed our baby to give her a good pat, and poke, and stayed patient when he snatched her hair in his attempt to explore. He loved watching Jess, and I’m so glad his first experience of a dog is of one that made him stare in delight.

Today we celebrated my husband’s fortieth in style. Afternoon tea at the Hilton. We ate fancy sandwiches and scones and cake, and drank endless tea. Lots of laughing and enjoyment, with plenty photographs to remember the day by.

Afterwards my husband, JJ and I went off to saunter around the shops, whilst the family went back home. Jess has been poorly recently, and sadly, today she took a turn for the worse. The family took her to the vets, so she could rest in peace. There had been an expectation this day would come, but it was still an enormous shock to reach it. We recieved the call when we got home, and our hearts sank at the news.

Later this evening, my husband and I watched ‘Fried Green Tomatoes at the Whistlestop Café’. To paraphrase the part where Ruth slips away, and Sipsey is comforting Idgie – a lady knows when it is time to leave.

We reckon Jess was over one hundred in doggy years, and she was most certainly a lady. For all the great memories there are of her, the family are very grateful, but like any wee pal that has to leave, she will be very much missed.

In loving memory of a sweet natured and cuddly dog. I look forward to telling our little boy about a doggy his Mummy really did think was easy to love.  

Fame

Last night we took our baby JJ to house group. We’ve done this as many times as possible since he was born. JJ is a good sleeper…once he’s asleep. So, we were really conscious of him staying up as late as he could when he goes to people’s houses in the evening, just because it’s light and there’s chatter to join in with. At home, if he’s in his cot, the room is dark, his music thing is playing, and he’s a toy to play with, and someone pops in regularly to pop his dummy back in his mouth, then he will fall asleep. But any whiff of a party and he can keep the shut eye away for hours.

So, we decided that rather than heft a travel cot with us, we would try a blow up toddler bed, so he had somewhere to lie down on in a darkened room. We wrapped a blanket over it so he wouldn’t try to snuggle under the duvet bit, and tucked him into a baby grow bag (like a sleeping bag for babies). One bottle later, and a bit of dummy back in back out and he slipped into the land of nod. The window we have for taking him places has been fairly wide as he’s a bit of a cheery chap who adapts to different places fast. Everyone came for a gawk later – there is nothing as sweet as watching a sleeping child. If anyone thought our method was odd, they didn’t say. We have a lovely group, and those times of fellowship include cracking dinners, fast chat and lengthy coffees. This among other activities has led us to trying to be as creative as possible in making it work for all the family.

Adaptability is the name of the game for both me and JJ. Today we kind of took it to the hilt. I will be writing on the blog a lot more about how we got to where we are, because days like today make it look as if it’s fairly smooth going getting out and about. This has been part of a process, and it’s just that today was one of the highlights.

Tomorrow is the party for my husband’s birthday. We are having afternoon tea. It’s booked for twelve adults, one child and one baby and with one serving of wheat free sandwiches. We had stuff to finalise so after a very slow morning JJ and I set off. It was a risky time to get going, as we were heading towards the bus stop at noon. That’s translates as – JJ likes a good lunch at noon and I was mad to get a bus at that hour. I had brought with us one of Ella’s Kitchen pouches and a spoon so we could munch on the completion of our journey. We love Ella’s pouches. Perfect travelling food. And yummy too. I know so, because JJ says mm, mm, mm more eating pouches than anything else.

The bus arrives and we are informed they have a wheelchair already. No worries, say I, when shall the next bus be? Driver reckoned about another ten minutes or so.

JJ was in the Baby Bjorn carrier facing me. This meant he was on my lap and very secure. I had a pouch. I had a spoon. I had a bib.

Well, then, I thought, let’s have lunch.

Ooh, that’s brave you say. Yes it was – not only because the pouch had apples and carrots, it also had parsnip. And we hadn’t done parsnip yet.

I prepared the way, and the spooning began. JJ very happy, mm, mm, mm.

I will put in brackets the interactions of the day, so you can see a typical day, and the kind of conversations I have out and about.

(Woman at bus stop approaches. She tells me something incomprehensible about my bus card and a folder. I nod, smile and thank her. Spoon, spoon, spoon. I realise my bag is on the ground exposed to wiley robbers. I cover the bag with my foot. Oh, goes the woman, do you want that bag up? No thank you, smile, smile. She boards another bus).

(New woman approaches. She is baffled. What the heck are we doing? I show her the pouch. Oh, she says, I thought that was juice. How, she surmised, was it possible to spoon juice into a baby? I wax lyrical about the magical pouches till the bus turns up).

It’s going well. I board the bus and it’s one of the really big ones, which means I get to show off. I board, and then reverse park into the wheelchair bay, whilst the bus is moving. The journey is smooth. Well, then, I think, let’s continue. Spoon, spoon, spoon. Very happy baby. Food and changing scenery. I wander if this will upset his tummy but reckon that as he is upright, this should hopefully be ok. We finish the pouch, and I tidy up. The trickiest bit was trying to take his photograph afterwards. Nobody spoke to us on the bus. If you act weird, then sometimes there is a threshold. You can tell me folk thought nothing of it, but to be honest I think wherever we go, folk are trying not to say – ooooh, look at that baby, and the mummy in the chair. I was glad we got ignored; coz spooning food into a baby that likes to chat can be a challenge.

We decant and then we negotiate some terrible kerbs, but the shop we needed to get to had shut down. Plan B. We find a shop eventually that has birthday banners. I yank out my grabber that is tucked into a pocket at the back of the chair as they are up high. Two banners down, then eventually someone comes to see if we need help. Good. Coz as much as that is the ultimate in independence – it’s obvious I’m not that good at the grabbing trick from a seated position. We finalise our purchases and then I have to explain how to get the grabber back into the pocket. It has its uses, but suspect in the long term am just going to have to keep asking for help with stuff up high.

Time to get a cake, so we go to the supermarket, and after choosing that that we go to pick up a fresh Ella magic pouch for tomorrow. An assistant approaches, and full brownie points for asking after was there anything else, but when I said no, he accepted that and moved off without too much hovering. However, not before confessing he loves Ella’s pouches too! When he can’t be bothered using his juicer he whaps down one of the fruit ones. True dedication to your five a day.

(We leave and then the class act begins. A woman approaches. JJ is asleep now, after a bit of giggling and a sing song from me, as we whirled along. Oooh, lovely baby. Yes, yes. Such long eyelashes! Nod, nod. They are. I tell her about his big eyes, and what a flirt he is. So, she asks, how do you manage? She answers this herself – you just do, don’t you?

You know people in the shop were talking about you, she tells me, and saying, ooh, look at that baby and the mother in the chair? I smile. Man alive, it’s true. And I don’t even see it happening, never mind hear all the comments.

She then asks the question that does bug me, because it is no ones business, but I’m in the mood for a wee chat. Can you walk at all then? I explain how far my mobility stretches and talk a bit about how I’ve set up the house, etc. Ooh, aren’t, you marvellous, she says. She refers to my ‘Brave Wee Soul’ sticker on the back of the chair and tells me it’s so true.

Then, she touches my arm.

Oooh, she cries, I’ve touched a famous person!

Ooh, you’re famous!

I don’t know. I think I blinked a bit. It was sunny, and I had enough smiles left.

So she cries as she departs, how could I be famous then? I know, I could get pregnant at eighty four. I wish her all the best)

We deliver cake, banners, etc, and visit the disabled toilet and have a quick nappy change for JJ, before boarding a bus to take us home.

Famous or not, there ends my tale of out and about. Delighted to say, food stayed in the happy baby, and not one carrot stained item to be seen.