Monthly Archives: August 2013

Good News Friday #20

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Good News Friday has had to become Good News Saturday this week. It’s not that there hasn’t been any good news until today, just that things have been hectic, even by our standards! I have two big deadlines looming at work (first one met, second one will be a seat-of-my-pants job) and I got a bit carried away with my Story of Mum exhibition on Friday. If you haven’t seen my identity parade, I’d love to know your thoughts.

Anyway, so where’s the good news? Well…

First, I got a seat for Boo for eating and playing. If you follow me on Twitter, you’ll have seen my moans and concerns about the fact that Boo’s OT referrals (health and social services) have not come through, after many months of being on the list, and despite him being flagged as an urgent patient. You see Boo’s increased and asymmetrical tone mean he is at risk of scoliosis (curvature of the spine) if he doesn’t have adequate postural seating.  The Cushi Tush I got him months ago is too small now.

So via Twitter and the blog’s Facebook page I sent out a request for advice from others whose kids have similar issues. I was overwhelmed by the response and decided he needed a Breezi. They are relatively expensive, even before you add the backrests, pommels etc. Boo will need. Long story short: last weekend I won one on Ebay. For £9.99. Yes: £9.99. OK I had to drive 100 miles there and back to get it and it’s a bit bashed about in the corners, but who cares? And even without the bits he needs, I can see it’s right for Boo. A rep for the manufacturer is doing an assessment for the inserts and accessories he needs on Tuesday and he is going to try social services to pay for them. We’ll see. Main thing is he is supported so his hand and arm function can continue (slowly to) improve. And then we need to get something for nursery…

While I’m on the subject of equipment, piece of good news number 2 is that I have sourced a new, safe carseat for Boo. So far he’s been in the 0-13kg seat his sister had and we had hoped to moved him into her old 2nd seat soon. That was before Boo become obsessed with his feet.

This has been good for his attempts at learning to sit but disaster for safety on the road. Using his special low tone/marshmallow body talent, Boo has learned to concertina his trunk down so no matter how tight his straps are, to wriggle our. Trouble is: a) it’s bloody dangerous; and b) he can’t get back up. I got some advice to call a carseat company with lots of experience in seating for children with additional needs. I admit I was a bit sceptical of buying something on the basis of phone advice, but they were great and gave me the option of returning the seat if I needed to. They also gave me tips on supporting Boo in the seat (did you know head protectors work great as lower trunk supporters if you just position them differently?). It has been brilliant! Totally what he needed. Journeys will be much less stressful from now on!

My third piece of good news, after all that, should probably be we’re not yet bankrupt, but is probably that I now have all of Sissyboo’s uniform ready for year one. There’s just the small business of me, needle, cotton, a glass of wine and 5000 name labels standing between her and year 1!

Fourth, … wait for it. I went out. After dark. To the theatre. I went to see Daniel Radcliffe in The Cripple of Inishmaan, a performance that inspired me to write a post about disability and theatre a while back (Radcliffe interprets his character as having hemiplegia.) I enjoyed it very much, although it (or more accurately, some of the audience) also made me very uncomfortable. I’m still working out why. Post to follow soon… But even better than getting out and seeing a play was meeting in person a new friend I had met on Twitter and only since starting the blog. She’s a lovely, talented lady and we had lots to talk about given some of the common ground in our lives. I’ve said it before, but starting this blog was one of the best decisions I’ve ever made!

Last, we have a visit booked to a conductive education centre next week where Boo has been offered a provisional place. I have heard great things about conductive ed for kids with CP. I’ve also heard from others who say it didn’t help their kids at all. But I feel lucky that we have the chance to see if it will be right for us. I’ll let you know how we get on next week. I might even get next week’s Good News Friday out on time. Might

Hope you’ve all got some good news this week. I love to hear from you!

Story of Mum Exhibition: Me, Myself, I (and the rest of us)

exhibition_button_logo_1And now for something completely different … Instead of the latest update from Boo Land, today I am thrilled to be taking part in Story of Mum: Mums making an exhibition of ourselves. As you’ll find out if you hop over to the Story of Mum website, this is a touring programme of exhibitions and events in galleries and online that aims to put mothers in the spotlight.

The exhibition celebrates motherhood, explores the impact of mothering on our identities, and encourages mums worldwide to share their stories in words, photos, collage and film. Find out more at www.storyofmum.com/exhibition.

Parallel to the real life events, a virtual exhibition is travelling round the world, stopping for mini exhibitions on blogs – like this one!Britmums

My task (and it was harder than I’d imagined) was to choose one item from the existing exhibition, create one item to add to the exhibition, and share my thoughts on these and my identity in motherhood.

So here goes.

I CURATED THIS:

Creations and Creativity

I really had a tough time coming up with just one exhibit to curate. Coming late on in the exhibition tour, there’s a real embarrassment of riches before me. In fact if I’d seen how great the previous contributions had been I might have been put off joining in.

In the end, though, I plumped for this Mama Mash-Up by a favourite blogger of mine, Instinctive Mum. I loved the beautiful simplicity of this exhibit, titled ‘Creations and Creativity’, just as I love the beautiful simplicity of the instinctive parenting promoted on the blog its from. Combining a black and white photograph of her children and a vividly coloured painting of her own composition this to me sums up so many of my own feelings about being a parent.

For me, this exhibit says it’s not I do this, but I also do that. I paint, or write, or work, or volunteer, but I’m also a  parent. It’s I do all these things. And yes, superficially, they might not seem to go or fit with one another. And yes, keeping them together and keeping sight of the bigger picture takes effort and creativity. But, you know what? They do go together. Not always (I have to confess that the messy drafts of the mash-up on Instinctive Mum’s blog were another reason why I chose to curate this). But when things come together, the results are stunning.

As Instinctive Mum puts it: ‘not quite perfect and a bit fragile (couldn’t find any glue to stick it all together!) yet it works!’

I CREATED THIS

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When it came to deciding what I might create for my exhibition, I was tempted to do my own mash-up. Anyone who has read this blog before will know I often feel like my life is a mashed up, but not in a good Michelin-starred kind of garlic and rosemary infused mash kind of way. I’m talking lumpy, powdery, difficult to swallow mash that begs for gravy to take the taste away. But it didn’t feel quite right. First, I am far too undecided and greedy to pick just two images to sum up my feelings about motherhood. So the Identity Parade seemed like a much better idea. Besides, I hadn’t made a paper doll chain since I was a girl and it looked like fun.

It took me a while to sum myself up in the five dolls (‘Someone Who Thinks Too Much About Things To Make a Decision’ would have been doll 6 if I’d allowed myself one). There are lots of other dolls I might have made (caffeine fiend and peacemaker were particular contenders), but I think these sum up the main priorities in my life right now.

There’s my desire to fight for and defend my kids against the challenges of life, especially since having Boo. (I’m sorry I ended up drawing a male lion and putting a bow in his hair. Feminist academic me is cross about that but my lioness heads looked awful!) Of wrestling with the financial and psychic necessity that I work versus my desire to be the best Mum to my kids and carer to Boo. The fact that Boo’s birth has turned me into an amateur and hardworking therapist, as well as a runner (to get fit and fundraise) and a blogger. (18 months ago I wouldn’t have believed I would ever me any of those three things.)

When I settled on my parade line, I was surprised, and not a little unsettled, by the strong urge I had to mash it up by tearing down the seams that joined the dolls together. To show how torn I often feel. How I feel I don’t fulfill any of my roles (assigned or aspired to) as well as I would like. Thankfully, I put the dolls to one side and thought hard about whether Pippa would strike me out of the community for breaking the rules. (I know you wouldn’t, Pippa, by the way.)

And then it hit me how utterly stupid that was. What I like so much about Story of Mum and its community is the importance it gives to narrative. How it recognises the power that lies in words and stories. When I started this blog back on the day after Boo’s first birthday in April this year I wrote that I had started blogging because, despite the damage that words and labels have done to us as a family since his birth ‘I still believe in the power of words to alter perceptions and change realities.’ And while the impetus of my blog Premmeditations is, in part at least, an attempt to inform or change people’s perceptions of prematurity and disability, I also know that it has the power to change my views about it all too. And this exhibition can do the same.

The only thing stopping me from seeing the different aspects of myself as being unified, I realised, was me or, more precisely, the stories I tell myself about me. That I’m not doing enough therapy with Boo, or spending enough time with his sister or at my desk. It is vital, as Story of Mum recognises and actively promotes, that Mums tell their stories, that they are heard, that they can represent themselves. But it’s also important that they have the opportunity to question the validity of the stories they have been taught to tell themselves about who they are and what they can be.

I am Mrboosmum, and I am a lioness, a feminist academic, a runner and fundraiser, a carer and a blogger. We may not get on all the time, but we can’t live without each other.

Or coffee. None of us can live without coffee.

To find out about how to submit your own mini exhibition or find other mini exhibitions to visit on the virtual Story of Mum: Mums making an exhibition of ourselves tour here.

Stop that, Boo!

I love quiet. I like to work in complete silence, or with classical music on very quietly on the radio in the background. I relish the sound of silence. Peace. Quiet.

And of course, with two young kids, I rarely experience it. But I’ve come to love the noisy hustle and bustle of our house: the music, the machines whirring constantly to clean up the debris of our lives, Sissyboo’s singing, the tears and the tantrums (sometimes from the kids), the negotiating for treats (ditto). It’s familiar. It’s comforting. It’s home.

But yesterday it struck me that another sound had entered our house and was competing for airspace. ‘Stop that, Boo!’ has become, without me even really noticing it, a recurring refrain of our day-to-day. It started out with repeated requests for Boo to stop pulling my hair or Sissyboo’s. He still does that. A lot. But just recently I noticed it’s happening in a increasing variety of contexts.

‘Stop that, Boo!’, I found myself saying yesterday when he was about to grab his dad’s coffee cup from out of his hand. ‘Stop that, Boo!’ when he was trying to pull the DVDs off the bookcase near the Cushi Tush he was sitting in, or trying to grab my food off my plate while sat on my lap.

I emphasise the trying, here. Reaching and grabbing are still inexact sciences for Boo as he struggles to get past the chaotic signals his brain is sending his limbs. But he usually gets at, or very near what he’s after, even if he can’t hold them well, and cups of water and pepper pots have started to fly.

And you know what? It’s bloody brilliant!

You know what it’s like. You have a child. They are adorable, but they can’t move or do much. You think, ‘Oh they’re so cute, but won’t it be great when they can move, or reach to play with my hair or talk to me’. And then they can do these things and all those people with that annoyingly knowing smile who said ‘Be careful what you wish for’ turn out to be right as chaos enters your house. All of a sudden the fate of all of your worldly possessions rests in the ham-fisted grasp of a toddler. It keeps you on your toes. ‘Remember the days they couldn’t do this,’ you say ruefully.

Not me. Not this time round.

Boo, you cause as much chaos as you like. Because I can’t tell you how glad I am that you can. I can’t tell you how much it buoys me up to gently and half-heartedly berate you for things I thought you’d be doing 12 months ago. How wonderful it is to talk to you, not just as a child who has to be carefully and specially looked after and loved, a child who has to be therapeutically handled because he’s fragile, but as a toddler-cum-Incredible Hulk.

I love this new chaos and I don’t want it to stop no matter what I say. ‘Go on’, she says, doing her best Captain America impression, ‘Boo… smash!’

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How far Do you Have to Come to Go Back?

When I got back from our family holiday I was dreading the backlog of  ‘To the Parents of Mr Boo’ letters that would be on the doormat. Any parent of a medically fragile or disabled child will know what I mean. The endless appointments that take so much juggling to attend, the dashed hopes when it’s not the appointment you’ve been waiting for for months and really need. The summaries of appointments that coldly reduce your child to a set of terms, conditions and prognoses. There were plenty of those, but the letter that really floored me was slightly different.
I knew what it was before I opened it. You see they’d addressed it to Boo but given him my surname (The Grumposaur and I are not married). It’s the name he went by in hospital even though we begged them (for the sake of my struggling-to-bond partner) to give him his father’s name, the one he was legally registered in long before he came home from the hospital.
Yes: this letter was from his NICU. And this meant one thing: an invitation to its annual reunion. It’s not in the NICU – it’s at a local school – and it’s a chance to reconnect with people and do some modest fundraising via tombolas and raffles.
When last year’s invitation came we had only been out of the NICU for a couple of months. Too soon, I thought. Next year, I thought. Well now it is next year and it’s still too soon. I can’t go back. Not even to a school where NICU staff and its wee graduates will be. I can’t do it.
Why? Please don’t think it’s that I’m not grateful to the staff there. I am. But in the four weeks we were there I didn’t strike up the same kind of relationships I did in the first NICU he was in. And as for reconnecting with other parents and children? Well, that assumes we connected in the first place. Sadly, we didn’t.
I read lots of premature baby blogs and am so touched and made a little envious (if I’m honest) when reading about NICU friendships. I didn’t make any. You see our local NICU, to which Boo was transferred at 32 weeks was not a high-level NICU. When he was moved, he went into intensive care (a blacked-out and totally depressing room). There were two other babies in it. They both were out in a day or two. Most seriously ill or very premature babies born there were transferred up to London or to other hospitals like the one Boo was born in because I work so far from home. As a result, Boo was always one of the most acute cases there.
Most babies who came in were in for a few days only. Their parents were no less worried, they were often extremely and visibly upset, but when they poured out stories while waiting to be discharged, about how they’d just had the worst 48 hours of their life and then found out Boo had been there for 5 weeks already, they ceased to be able to talk to me. It wasn’t a competition. But I got the feeling most parents thought we trumped them in the misery stakes. I wanted to hear their stories because I wanted people to talk to, because I wanted people to listen to me. But the minute people knew about Boo’s prematurity, the brain bleeds, the meningitis, or saw people running to administer facial oxygen after a reflux-related desat they stopped talking to me.
That NICU was one of the loneliest places I’ve ever experienced. I was there for hours every day but I never got used to it. All I wanted was for him to get out. And now we are, and grateful as I am for all they did for us, I can’t go back. I can’t be one of the parents of the children who didn’t get away with it. All the 27-weekers and just fine now little folks people tell me about in conversation all the time to give me hope about Boo.
I am proud of Boo and all he has achieved and genuinely happy for all those babies that got away with it. But I don’t want to be reunited with the pain and the loneliness. I can’t go back. I wish I was strong enough that I could, but I can’t.
We’ve all come such a long way in the last 18 months. Just not far enough it seems. Maybe next year. Maybe…

Good News Friday #s 17, 18, and 19: Three for the Price of One!

I haven’t put up a Good News Friday post for three weeks. In part, it’s because I went on holiday and so other things (good newsy things like excursions and family time) got in the way. To be frank, the first Friday of the holiday also coincided with a big upset in Boo Land, occasioned by The Grumposaur saying he never wants us all to go away again as a family for 2 weeks) and I got very upset and not in the mood to write upbeat stuff. Things improved dramatically by the following Friday, but by that point apprehension about getting back to normal kicked in and I couldn’t bring myself to write a GNF post then either.

What a little ray of sunshine I’ve been. And it’s such a vicious circle. I felt down so I prevented myself from thinking about all the good things going on in our lives, which made me more down, which … oh you know how it goes. I also really missed hearing the good news people share in response to the posts in the comments on Facebook or Twitter. So enough already. There have been done rough old moments in the past three weeks, but here are just a handful of the highlights:

1) Fun with the Boos. Yep it got hairy at times (and more sleep would’ve been nice) but I had some brilliant times during our trip away. We did some fabulous things and went to some lovely places. (More on some of those in my catch-up Play Agenda post coming soon). We laughed a lot. We were silly. We broke some of our rules and ditched our routine. It was great!

2) No work. I have tried not to work on holiday before. I have never entirely succeeded. The flip side of a job with flexibility where you can be at work at any time means you are usually at least partly at work most of the time. It doesn’t help that The Grumposaur always works when we’re away (a hazard of being self-employed) so we always stay in places with wi-fi and always have a laptop. But aside from a couple of emails, I did no work at all. And while this means I am rather in the doo-doo for the next three weeks, it was lovely and, to my surprise, I didn’t miss it much at all.

3) Finding a swing Boo could swing in. I’ve blogged about this in the past week, but I just have to mention it again, because the mere act of typing these words puts a smile on my face.

4) The kindness and knowledge of the Twittersphere and Blogosphere. Before we came back from our holidays my anxieties about us still not being seen by the OTs (health and Social Services) to get Boo some postural seating before he develops scoliosis really took hold. I wanted to do some more research on possible seats and how we might fund them without going bankrupt so as to be armed if, as has happened I got back to find that despite being urgent and both OT teams wanting to see him, they can’t yet because of the length of the ‘urgent’ waiting list. So I put up a tweet and a request for advice on Facebook. I was overwhelmed with dozens of responses in minutes. Folks I don’t know from Adam retweeted and shared and within an hour I felt better informed than all my hours on the internet desperately searching for information had made me. Thank you!

5) Boo’s posture. I am genuinely worried about him developing scoliosis. When all four of your limbs have a tendency to spasticity and dystonia and your trunk tone is low, well, let’s just say things are hard on your back. When you’re big too (at 14.5 months corrected he weighs 10.5 kilos) it’s even harder. But those worries aside, Boo is seating (supported of course still, but with much less support) without the persistent C-shape in his spine that I never thought we’d see the back of. He reaches for his toes in sitting now and when he inevitably bends double and his head hits the floor, much of the time (not all, but much) he can push himself back up. I remember his sister doing this days before she sitted unassisted. Now days in Sissyboo’s life can lasts months for her brother, but you know (shh, don’t jinx it, fingers crossed) he may be getting there. He may be heading towards sitting one day. Don’t worry I’ll tell you when he does. I may light beacons, ring every church bell in the land and streak down my high street too.

There have been other good things, too, but since many are tied up with the things we did while away and I want to blog about them separately, they can wait. But I can’t wait to hear your good news. So please do leave a comment, or send me a tweet (@premmeditations) or hop over to Facebook to let me know. I’ve missed hearing from you!

This is My Child: Why I’m Supporting the Mumsnet Campaign

This is my child. I call him (on the blog anyway) Mr Boo, or Boo for short. He is 16.5 months old. Well I mean he is and he isn’t. He was born 11 weeks early, so he’s 14 months actual age. He is the younger brother to Sissyboo, who is 5 and marvellous. He is one of the happiest, smiliest children you’ll ever meet. He has blond hair and piercing blues eyes. He also has bilateral brain damage (PVL) caused by him contracting meningitis at 3 days old.

The brain damage means that he has likely cerebral palsy (I say likely, we are 99 per cent sure but are awaiting the results of other tests for other, worse things) and epilepsy (in his case the ‘catastrophic’ infantile spasms). At 16.5 months he can sit, roll, crawl or walk. He may do some of these things eventually or he may not. He is beautiful even though his life is hard.

This is my child. But when others look at him, and boy have they started staring recently, they see all sorts of things. Some glimpse the challenges of his life. The many weekly appointments, the daily therapies, the disrupted nights, and some feel sorry for us. I hope they can also see how amazing it is he’s here. That he survived. That he isn’t cast down by his difficulties. That he is tenacious and inspiring. That he is a little boy. That he is a toddler, he just can’t toddle.

Others see different things. Sometimes I have to guess what they’re thinking. Sometimes they just go right ahead and tell me. Like the woman in the park, where my daughter was playing while I worried her brother might never be able to, who after I answered her question about how old he was (I always give both ages, so she knew he was premature) said ‘Haven’t you got him sitting yet?’ No:  and it’s all my fault, right? Because 1.5 to 2 hours of physio a day on top of appointments, feeding, looking after him, oh and his sister, and my job and sometimes remembering to sleep and feed myself isn’t enough. Because I should be able to slap the metaphorical holes in his brain on the wrist and tell him to do what they’re told.

Then there was a waitress in a cafe who when I said we didn’t need a highchair for Boo (he can’t sit in them) said ‘Oh you’ve got a naughty one then’. I didn’t know whether to do her a crash course in premmie/SEN baby parenting, run out or cry. I stayed, cried inside and spent a horrible evening sobbing when I got home. And his sister was there when she said it. She was angry. As always, I should have taken my cue from her. She is 5 and as I’ve blogged about before she could teach so many grown ups about how to deal with ‘disabilities’ or ‘abilities’ as she calls them.

I could go on, but you get the picture. These experiences and so many others like them are why I fully support the Mumsnet This Is My Child Campaign. I have read so many wonderful and powerful blog posts and tweets from its supporters documenting the prejudices they face, as if their kids’ conditions weren’t enough to handle. Much of the focus has been on invisible conditions such as ASD, ADHD and SPD. I fully understand this. My oldest friend has a 6-year-old recently diagnosed with ASD and another close friend has an 11-year-old diagnosed with Aspergers and watching the last decade of her battles with 4 different LEAs has been heartbreaking at times. Boo’s epilepsy and neurological problems mean he is at ‘high risk of cognitive impairment’, as the letters say. Children with physical disabilities face different challenges and are not invisible in the same way. But the prejudice is still rife. The myths are no less prevalent. The words still hurt.  And the heartache is as real.

So please get behind the This is My Child campaign by writing your own blog post, contributing to the online forums or tweeting your support. This is my child. And, if you do so, he and I will thank you for it with all our hearts.

This is My Child Mumsnet

Swing Time. lt’s All About the Letting Go.

It’s been a few weeks since I have written a new post for one of my favourite linkys, Small Steps Amazing Achievements. It’s partly because I haven’t been able to see the wood for the trees lately and partly because Boo hasn’t read the memo and realised that weekly steps in the right direction are good for the blog. Get with the programme, Boo!

And then we went away for two weeks. I had thought that this would mean more therapy, because he would have more time with us. In practice, it meant more travelling, more out and about time, more fun, but not more physio. There’s part of me that feels I’ve let him and another part of me shouting as I typed that, ‘Boo needs a break too, Boot Camp Mummy’.

He did get his physio, but he also got a break. I think he rather liked it. But not as much as he did his new favourite holiday hobby. Swinging.

Playing in the park is something I totally took for granted when I was a kid. We had a rec near my house, which I loved and a garden big enough to house a double swing and a rather optimistically named skyglider.

Fast forward thirty years and Sissyboo loves the huge park near our house. I would have called it an adventure playground when I was young (how times have changed) and we spend a lot of time there, partly on account of our garden being roughly the size of a large envelope stamp.

For Boo, though, as in many aspects of his life, the park is a different beast. It has its excitements, to be sure, but it is also a bit of a minefield. Our park is reasonably well equipped for littlies (small wooden houses to play in, see-saws, baby slides and swings). Boo can’t use any of these things conventionally because he can’t sit independently. But we brave the stares of others and the challenges and take him fairly often and he loves it.

Most of all he loves the swings. Putting him in them and keeping him in them is a bit of a military operation, though. First there is getting him without his legs going rigid. Then there’s getting him into a posturally appropriate seated position. Then you need to support him so that he doesn’t: a) do his finest leaning tower of Boo pose; or b) face plant onto the safety bar.

We can’t let go. He doesn’t mind too much, but we all know it’s not quite the same experience. For him and, to be honest, for us.

And then we went on holiday and the cottage we stayed in had access to a shared small playground. It had a swing, a swing I’d seen before. It’s not a SEN swing, so far as I know (at least, lots of non-SEN kids I know have had them in their gardens), but it is high-sided, and supportive.

We got Boo in and strapped him in. There was a bit of side-leaning, but his posture was OK and he couldn’t fall out. Hang on. He couldn’t fall out. Did you hear that?

He could swing without falling. Without me holding on for dear life. I couldn’t believe it. I pushed him gently. He was OK. No: he wasn’t OK. He was grinning like a loon. He was laughing like even Boo doesn’t normally laugh.

I was standing in front of him and I continued pushing. Before I had time to compute what I’d done, I had let go.

I was pushing my boy in a swing. And he was having a wail of a time. You won’t get the full effect from this photo, but take it from me, if you could have seen his face…well, let’s just say you’d have been staring a pure unadulterated happiness.

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And if you could have looked at me. Well you’d have seen the same.

I never want to let you go, Boo. And I will hold you and your sister near and dear always. But sometimes, some day, I need to loosen my grasp. This swing let me do it for a few, short minutes a day. And while I was nervous, these were special moments and I hope the shape of things to come.

And in case you’re wondering. Yes: we’ve ordered one for the garden. It will take up the whole damn space, but it’ll be worth it.

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