Tag Archives: disability

Frankenstein and other demons

I went out last week. Hang on, I’ll say that again. I went out! A night out to celebrate a good friend’s birthday with some other very good friends I see all too infrequently. I was driving so not drinking (probably for the best – you’ll see why), but I was out. After dark. People do this. I’d almost forgotten.

Friends and a film. What more can you ask for? And not just any film. We were going to see, very belatedly, Danny Boyle’s NT production of Frankenstein with Benedict Cumberbatch as the creature and Jonny Lee Miller as Frankenstein. Two actors I like a lot. A director I admire hugely. A novel I love and know backwards, forwards, and inside out. And good company to share popcorn with. What could go wrong?

People. People went wrong. And I haven’t felt right since.

The screening began with a very short documentary on the making of the production. Most people seemed uninterested in it and for most of it I was too busy dealing with texts from home about the location of grobags and sterilised syringes to take much notice.

But my ears pricked up suddenly when I heard Cumberbatch talking about stroke patients and watching as many videos as he could of their recovery to try to figure out how to convey the birth of Mary Shelley’s creature: a man who through the accident of his creation has a brain and a body that aren’t wired up as they should be.

I felt a hot stab of pain run through my chest as he spoke. He was talking about neurorehabilitation. He was talking about intensive physiotherapy. He was talking about the impact of neurological damage on gross and fine motor function. He said stroke survivors, I thought cerebral palsy. Did you know many people with CP had a stroke before, during or shortly after labour? Boo didn’t, but I knew that what Cumberbatch was trying to do with his creature would strike very close to home. I worried I wouldn’t be able to deal with it. I’m not sure I did.

He was going to be on stage what Boo is in life: a person not entirely in control of his own body. And he would be doing this in the context of a fictional world where he (nameless, and known only as the creature, an ogre or ugly man) is considered monstrous. And that would be hard for me to see.

That’s the point of course. And Cumberbatch spoke directly and eloquently about this in the brief documentary. He wanted to convey through this intensive research the profound physical and emotional vulnerability of this man. For my money, he did. Brilliantly.

If you’ve seen the show or the filmed version you won’t have forgotten the first 10 minutes or so. It is a scene that is unrecognisable from the book, in which the creature is galvanised and shunned by his creator in a heartbeat. This was different. Ten long, extraordinary minutes where the creature emerges from an artificial embryo and writhes, dystonically around the stage on his back, front and eventually on his legs, battling his body at every turn, its spasms and the natural patterns of movement that you and I learned to overcome in baby and toddlerhood. It was remarkable. I saw dystonia. I saw hyperextension. I saw movements, jolts and shakes that anyone who knows someone who lives with CP would recognise. It was extreme. It was one of the most viscerally affecting things I have ever seen. Boy he’d done his research and executed it extraordinarily.

It was supposed to be hard to watch, of course. And it was. Really, really hard. But for me it was hard in ways I bet it wasn’t for most of the people in the audience. I sat there digging my nails into my palms so that I didn’t cry. I didn’t know the two people sat next to me at all well. I couldn’t let them hear me cry. And I’m not sure they’d have understood why I was sobbing anyway. You see, I wasn’t choking back tears because of what I was seeing. It was what I heard that hurt.

Laughter. Lots of laughter.

Now, I’ve been somewhere like this before when I saw The Cripple of Inishmaan, starring Daniel Radcliffe, last year. That was both great and hard to watch, too. But that was a comedy. Frankenstein is not, nor did Boyle intend it to be. And people were laughing. Hard.

Now, you might say (and I can see the truth in this) that people were laughing at the creature because they felt uncomfortable. All those teenage girls in the audience who were there to see the man they know best as Sherlock probably did feel uncomfortable seeing their heartthrob look and behave physically so out of character. But they laughed also at a sight they clearly found humorous. A grown man moving around like an uncoordinated toddler.

I have never ever been so relieved to get to end of a scene as I was to get to the end of that one. I thought it would be OK after that. But if anything, it got worse. One of the hardest things to convey in any adaptation of Frankenstein must be the creature’s acquisition of language, which comes about rather improbably in the novel itself. This adaptation did things a bit differently from the novel and lost something as a result, but it worked well enough. And again Cumberbatch was just brilliant. His speech reminded me of Boo’s. The high tone he affected in his mouth and tongue made his speech sounds indistinct and child-like. The dissonance between his manner of speech and its content (the creature can quote epic poetry and ancient philosophy) was supposed to startle the audience just like it does in the novel. But I can’t help but think it wasn’t supposed to make you laugh. And people did laugh at him. A lot.

Believe me, I do still have a sense of humour. I really do. But this was not funny. This was about that vulnerability spoken about in the documentary. About how the way that someone looks or sounds overrides what they know and who they are.

This creature was vulnerable not because some mad scientist made him wrongly. He was vulnerable because the world is full of people who are innocent or ignorant, personally insecure or prejudiced or just downright cruel.

If making audience members aware of their own complicity in these forms of prejudice was part of the point of Danny Boyle’s production then it was a point not lost on me. But I worry that those who needed to hear that message most might not have.

Because my work takes me into the past a lot, I often thank our lucky stars that Boo was born in the 2010s, with the wonders of modern medicine (without which we both would have died), modern technologies and disability legislation. But what Frankenstein showed me was that when it comes to prejudice, the past is still with very much with us.

Perhaps you will think I’m being unfair or high-handed. Perhaps you’ll think I’m overreacting. Maybe I am. All I can say is that this production of Frankenstein was as much a revelation to me as the novel was when I first read it at the age of 15. There were bits of the script that I thought were weak. There were bits left out of the original novel that I thought the play really needed to make full sense. But the performances, particularly Cumberbatch’s and Miller’s, were astonishing and worth all the accolades they got. The direction was superb and the play hit its mark.

But I left ever more convinced of something I see and feel every single day of Boo’s life. Physical and neurological difference don’t make people vulnerable. People make other people vulnerable. And people can be bloody horrible.

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Accepting that Others Don’t

The A-word is a big one in the premmie and special needs worlds. Almost the minute after your baby is born early or when health or developmental difficulties first become apparent in your child, healthcare professionals and a host of well-meaning folks start telling you that you are on the road to acceptance and that it will take you a while to get to your destination. But you will get there, they tell you. You may find yourself in Holland at the end of the journey, but who wants to go to Italy anyway. (I, for one, am quite fond of sun and pasta, for the record.)

When I think back over the past year and a bit of blogging, I realise that I have blogged much less about acceptance than I might have imagined I would. It’s true that one of my favourite posts on the blog (because it’s about one of my favourite people) is about Sissyboo’s instinctive acceptance of her little brother. But I have written about acceptance much less in relation to me.

There are two reasons for this. It’s partly that, quite frankly, I don’t like the word all that much. As I’ve said before, accommodation seems a much more accurate way of describing my response to Boo’s challenges. But it’s also simply the fact that since he was three days old, I just knew life would never be straightforward for Boo. Once he had contracted that bloody infection in his incubator, and once we heard that he had sustained a massive brain bleed, I knew what that likely meant. I wanted things to be different, of course. I wished, begged and prayed that I was wrong. But I knew. I’d accepted the difficulties that lay ahead long before we got a diagnosis of cerebral palsy or before I even knew precisely what those difficulties  would look or feel like.

I haven’t written much about acceptance on the blog,I now realise, because I have pretty much always accepted things. Or at least, I accommodated myself to them a long, long time ago.

I feel lucky that acceptance has been relatively easy for me. That’s not to say that I’m not regularly twisted into knots or prone to depression, anxiety or the odd waterfall of tears with worry about Boo. But I have seen the pain and anger that others have felt trying to take on board how things are and are likely to be for him. And I am glad that I have never had to feel that and that such emotions have never got in the way of my unbounded love for him.

But lately I have come to realise that I do feel pain and anger (irrational and unkind pain and anger, I think) when confronted with others’ lack of acceptance of my son. I’m not proud of it, but it’s true.

This is the sort of thing I mean.

Scene 1

Me [talking to parent in the school playground]: Yes, Boo’s doing well. Thanks for asking. [An awkward pause while I try to think of something to say that is a positive in our lives and that they won’t greet with that look of pity I find so hard to takeBingo!] He was given a walker to try out by his physio last week.

Parent: [with palpable relief that I am not going to talk about things that make them uncomfortable like the fact he still can’s sit independently]: Oh that’s wonderful. He’ll be running before you know it. You will be sending him here to school won’t you? He’ll be captain of the sports team one day, I’m sure.

Scene 2

Me [making idle chit-chat while waiting for our mainstream swim class to start while Boo is eating my hair and trying to break my back by going into full extension in excitement]: Boo’s moving up to the nursery room next week so he’ll be with J. We’re really pleased he’ll have a friend there.

J’s Dad: Great. It’s good they’re finally moving him up to be with his peers. He’ll catch up with the rest of them in no time, I’m sure.

These are both real-life conversations I have had in the past two weeks. I could have picked around a dozen more in the same period. All were had with well-meaning and thoroughly nice people. But they left me sad. More than sad. Angry. Not with these people, you understand. That would be wrong. But just with the situation. With the failure of others to come to terms with things as they are.

I don’t know if Boo will go to mainstream school. It’s possible. But his physical needs are severe and he would need considerable 1:1 input. It is unlikely he will go to his sister’s school. Even if he did, he will never be the captain of the sports team. I don’t know if he will ever walk unaided, but the best guess of everyone involved, is that even if he can walk short distances with a frame, he will use a wheelchair much of the time. He will likely never run.

And he will never just catch up because he’s not behind. He is exactly where he should be – no: he’s miles ahead of where the MRI scans suggest he should be – given the extent of his brain damage. Of course, being with his peers in nursery is a great thing. I couldn’t be happier that this has happened and that the transition has gone well. But Boo will never be exactly like his peers. And why the heck should he be? He’s just perfect the way he is.

Oddly, I find the eternal optimism of people we don’t know very well to be much more difficult than some of the doom and gloom predictions of medical folks we see regularly. It’s much easier to prove people wrong (and Boo and I take great pleasure in doing this on a regular basis) than to disprove that others could ever be right. And on the odd occasion where I have corrected people and pointed out that it’s unlikely Boo will outrun Mo Farah one day, but that that’s fine and we don’t care, I have been made to feel like I am a pessimist, have an unhelpful attitude or that I have done something wrong in not doing my best to make other people feel better by painting a false picture of my son’s life and future.

I am aware in writing this that you might think me mean spirited. I hope you see that I don’t blame people for saying these things, but I do find them difficult to take. You see, they are a constant reminder to me that we can accept Boo completely, but they – society at large – will always be judging him according to a yardstick he can never live up to.

So I guess I do still have quite a bit of emotional work to do. Accepting that other people find it hard to accept Boo is going to be one of my trickiest challenges. But I have to work on it. Because my little boy is going to have to do this later in life, and his sister is already having to do it now. And I want to be ready to help them. Because we are in this together.

Guest Post: How Can I Make Working Work?

This post is not by me. It’s by someone who wants to remain anonymous. But the story she tells is very real and a powerful reminder of how very quickly and irrevocably lives can be changed by disability entering their lives.

I write this post with some reluctance due to the enormity of the decisions we made in 2012 but I stand by each and every one. I also want people to know how easily situations can change. You can be a working mother one year, and rely on “benefits” to top up earnings the next. You can ” have it all” –  house, 2 cars, holidays, good jobs, career and can lose everything very quickly. 

I loved my job as a science teacher. The kids were brilliant. However over my almost 10 years of teaching I saw the profession become increasingly less fun with more marking and more reinventing of the wheel. Preparation, marking, feedback, observations – all began to take over my life especially as our school went into special measures.

Yes we have 13 weeks “holiday” but this is usually spent on marking coursework and books (or pretending that the huge piles of it aren’t still in the car later into the holiday and having to do a 3 or more day intensive marking session to catch up). Contrary to popular belief you don’t whizz out the door at 3.10pm you have meetings, phonecalls, preparation and marking. You can either take it home or do it there, but it still needs to be done. 

I went back to work full time after my first child. Childcare was split between my my mother, my MIL and my husband who had flexible working. When my second child was born I had planned on taking a full year off and then reducing my hrs to 4 days a week and thus not needing to lose any of my responsibilities ( TLRs) that I had built up at work. However all of a sudden I became the mother of a severely disabled child. He wasn’t content with with just being profoundly disabled, he had many health problems too,  and would become very ill very quickly ( think resuss and you have a fair idea). Added to the mix was a probable limited life expectancy and him being classed as life threatened. I had to go back to work anyway for a set amount of time or pay back all of my maternity pay. I negotiated a further reduction of hrs to 2 days per week, gave up my extra responsibilities and attempted a return to work. We struggled financially with me working this way but those few days were difficult enough.

I left my son with 2 terrified grandparents each day I went to work. They struggled with his care and his equipment. There was a mention of 2 year funding to help with a nursery place but no guarantee of 1 to 1, and we didn’t fall into the “right” post code anyway. Even so, what mainstream nursery could have coped with my son’s needs? So those 2 days a week I sat at work panicking about what was happening at home and still had all the prep and marking that came with the classes I taught. I tried to stick appointments in for the back end of the week but those 3 days turned into a chaotic mess.

After a few months I began a spiral into depression and was signed off work sick, and then eventually handed in my notice. We were in and out of hospital with my son, had appointments galore, and had 2 grandparents too scared to look after him and no alternative childcare, what else could I do? 

We had a mortgage on a house we had already been told was unadaptable for our son’s needs and had had it on the market a while with no success. 2011-2012 was not the best time to be trying to sell a house and in addition all those debts you have and pay quite easily on 2 wages were starting to mount up. We asked the mortgage company for help- to just pay the interest on the mortgage until we sold, but they refused. 

As the bells saw in the new year of 2012 we made a huge decision. We needed a fresh start. Our son’s issues weren’t going away anytime soon and we couldn’t manage financially on my husband’s salary. We declared bankruptcy in the February and even had to borrow money from friends to pay for the bankruptcy (it wasn’t cheap at over £700). However what the courts don’t do is automatically take your house (although they did take my car). They bend over backwards to help you keep it. But it was no use to us and even without the debts the bankruptcy cleared we still couldn’t pay our hefty mortgage. After about 6 months of non payment the bank took the house. In that time we had already (just) been housed by the LA in a large house that could be adapted for our son. Getting rehoused was an awful process of begging and pleading. Quite frankly I have never felt so low as I did during this period of time. 

So now we are 2 years on and my son has started school! He has a full time placement at an amazing special school expert at dealing with complex needs. However he’s rarely there all day as we have so many appointments. I had hoped to consider returning to work once he started, but with 2 or 3 appointments per week who would have me? I considered supply teaching, although it would pee me off in a way to be “at the bottom” but more importantly who would care for my son before and after work? I can’t change career as we have no one to look after our children in school holidays.

What do I do? 

 
How can I make working work? 

Things I Wish I Could Say to You

I have a confession to make. I know… Another one.

OK, here it is: I check the stats page of my blog. A lot.

Not for the reasons you might think, though. Obviously it’s nice to see that people have read what you’ve written. But this is a small blog. I hover around the edges of the Tots100 500 ranking and that’s more than fine with me. Because I blog primarily to work things through in my sometimes messed up noddle and to connect with others. If I connect meaningfully with 3 readers rather than making casual acquaintances of 3000, that’s all I care about.

So why my stats page obsession?

It’s about how people find me and this blog. The search terms people use to find Premmeditations, and which appear in my WordPress stats page, range from the neutrally descriptive (“premmeditations”+”blog”) to the oddly inquisitive (“who is Mrboosmum” is a recurring one, which I don’t think even the all-seeing Google knows the answer to, or why anyone would really care, for that matter). Occasionally a mildly disturbing search string rears its ugly head and I feel glad the kids’ pics and names aren’t on the blog.

Then there are the rest. These floor me on a fairly regular basis. Many are from parents or relatives of children born prematurely. Often they consist of a gestation and a problem. They go like this:

“breathing difficulties”+”28-weeker”

“NEC in premature baby”

Others are less specific but just as heartbreaking to read:

“son born 27 weeks”+”will he live”

“granddaughter born 29 weeks”+”will they be normal”

Others concern disability:

“does prematurity mean my child will be disabled?”

“cerebral palsy”+”can you lead normal life?”

“PVL is outcome always bad?”

“child has brain damage feel so alone”

And many, because not many bloggers write about this rare form of epilepsy, I guess, are about infantile spasms:

“IS”+”will child ever walk?”

“normal life after infantile spasms”

“IS will life always be this hard?”

Each one of these search strings stops me dead in my tracks. I’m not a crier by nature, but tears do well up often. My heart races for a moment and then cracks just a little bit more.

You see, I was that person. The very first thing I typed on my Iphone into Google the night Boo was born was: “baby born 29 weeks survival rate”. The clinical nature of the language doesn’t disguise how bloody terrified I was. How I felt as if I was being eaten away by fear and love.

And then Boo got sick. And I googled brain bleeds and PVL for months. Every good news story gave me hope. All the more difficult stories filled me with dread. The ones I thought most likely to match Boo’s destiny changed on an almost hourly basis.

And then I calmed down a bit, and relaxed (a bit) into caring for Boo and his sister when infantile spasms struck and it started again.

I was and am the people who find my blog. I know something of what they are going through. I share their pain and fear every time I read their searches and remember each desperate plea for information I typed (still do sometimes) into the internet as if it would give me the certainty no medical expert can.

And I wish I could give these people the answers they so desperately need, just as I wish I had answers to my own questions about Boo’s future.

But I don’t. All I have is our story. One example of how things can be. No one else’s story will be the same as ours.

I wish I had more to offer. I wish I could track each and every one of the people who find the blog down and give them a virtual or real world hug. I wish I could listen to them and let them express all their anxieties. I wish, most of all, I could tell them that their story will have a happy ending.

I don’t know that, of course. But this life has taught me some things that I hope might help and that I want to share with anyone who found this blog in the wee small hours because they wanted information or to feel less alone.

1. You are stronger than you think. Life may be hard at times, but you can and will get through things. This doesn’t mean it won’t be a struggle sometimes and it doesn’t mean you should try to get through these things without help. Take all the help and support you can. It doesn’t make you weak. It makes you responsible.

2. Knowledge is good and knowledge is power. But medical knowledge is often relative. Just because PVL has resulted in quadriplegic cerebral palsy for Boo doesn’t mean it will for your child. Allow yourself to find out as much as you need to feel informed. But try not to let yourself be overwhelmed. No one can tell you with certainty what’s ahead of you all. That is scary, but also offers hope.

3. No one can tell you how to react to any of the stuff life throws at you. Everyone reacts differently (even, perhaps especially, parents of the same child). Allow yourself to feel what you feel without guilt about having those feelings.

4. But know this. Things get easier. There are things in our life that I thought I could never get my head around. But I did. That doesn’t mean I’m always happy about them, but they became part of the fabric of my life almost without realising it.

5. You will be happy again. Tough times make good times, and even OK and fairly mundane and ordinary times, taste better than you could ever have known before. I will never be grateful that Boo was born prematurely and will live with cerebral palsy and epilepsy for the rest of his life. But I know that I have a new appreciation for life that I wouldn’t have had without him. And I have lots of fun and we all laugh a lot.

6. There are lots of us in this community (parents of premature babies, parents of disabled children) and many of us like and need to talk and know how important it is to have people to listen to and really hear you. Seek these people out in forums, Facebook groups, twitter or via blogs. They will make your life a whole lot better. I know, because they have done that for me.

Take care,

Mrboosmum

I’d like to thank Emily Jerrome who tweets over at @mrsekj for suggesting I write a post along these lines during a chat on Twitter last week. 

 

PoCoLo.SoFoLo

Decluttering: Hard on the Heart but Good for the Soul

I read a lovely post the other week by the fabulous Learner Mother. It was about September and her new year urges to get her life sorted and ultra organised. I recognised these feelings. It’s partly a symptom of working in Higher Ed. I always operate according to two years at any one time: the calendar year and the academic year. And for me the academic year has always felt more New Yearsy (that is absolutely a word, before you go running to the dictionary…) than New Year itself. It’s something to do with the weather being better and not feeling weighted down by all those mince pies, I think. In September I want to plan, file, spring clean, declutter and otherwise sort my life out.

This year is no exception. But I admit, I’ve hit a brick wall.

Decluttering. It’s not something I usually have a problem with. I don’t think of myself as being a hoarder (we don’t have the space at home for me to be for a start) or a procrastinator, but I have become expert at both recently.

You see, I kept everything after Sissyboo was born for the second child I hoped we’d have one day. When the 20-week scan revealed most of her clothes wouldn’t be suitable for number 2, I piled them up (keeping only a few things with sentimental value) and sold them at a nearly new sale. (Over a year later I finally got round to spending the money I made then on a family ticket to the Harry Potter Experience next month.)

But I kept all her toys. Not being a fan of the insidious way toys can be gendered I even kept what we fondly know as the Princess mobile, a mini-tractor type thing she was bought by a relative at 12 months, covered in Disney princess stickers and bright pink for him to play on. And then there was all the equipment. The car seats, the baths, the travel system and buggy and so on.

We’ve put lots of it to good use. And I love seeing Boo play with his sister’s rattles and books and shape sorters. But it has been frankly heartbreaking to see how much he can’t use and may never be able to use.

The Bumbo never provided him with enough support. After weeks of trying him in it for a few minutes a day I knew his low trunk tone was not something he was going to quickly grow out of. The infant reclining plastic bath seat started to produce what I now understand to be some sensory issues (he startled every time we put him in it) and now he’s too big to fit in it anyway, but can’t use the upright swivel bath seat Sissyboo moved onto next because it relies on kids being able to sit independently.

Same goes for her cute highchair, the buggy that hopefully soon will be replaced by an adapted buggy with wheelchair services. Oh and the car seats, that don’t support him adequately, and which we have now replaced at great cost with a fabulous Scandinavian contraption that I defy Houdini to find a way out of. I don’t think he’s destined to scoot off with Snow White on the Princess mobile any time soon either.

But I still have all this stuff. And it is useless to us and to Boo. I need to get rid of it. But I haven’t been able to yet, despite it taking up so much room in our house. It’s partly because life is manically busy most of the time, but I know there’s a deeper reason.

You see, I know that in getting rid of all this stuff I am saying goodbye forever to the childhood I had imagined for my son. The conventional upbringing, the normalcy I wanted for him. And it breaks my heart. For him. For us.

But something happened over the past week. I don’t know whether it’s September and my New Yearsy (I told you, it IS a word) feelings, a shift in mental gear or what, but I have started to take pictures of all this equipment to sell on Ebay.

Because I realised that this stuff is just that: stuff. Yes, I have happy memories of Sissyboo using it, but keeping it for Boo is only causing unhappiness by reminding me what he can’t do. I write so often on this blog about how all I want is for people to accept Boo for the beautiful person he is, and in keeping hold of all this stuff I realise am being hypocritical. I need to accept that we need to support Boo (literally and figuratively) as best we can and clinging on to things that might make him seem normal if only he could use them is failing to do that.

Now I’ve come to that realisation, I feel happier. And I think I’ll feel happier still when the stuff is out of the house. He doesn’t need it. We don’t need it.

So out with the old and in with the new. I’m not saying goodbye to one kind of life (actually, we said our farewells a very long time ago now), I’m saying hello and welcome to the life we have. And it is a good one. A really good one.

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

Carers Week 2013

This week is Carers Week. In addition to raising awareness of the vital role that the staggering 6.5 million carers play in families and communities, this week encourages individuals to self-identify as carers in order that they can receive the practical and emotional support they might need to guide them through what is one of the most important, undervalued and demanding jobs (and yes it is work: hard work) we can do.

Since the birth of Mr Boo at 29 weeks last April I have been a carer. It still doesn’t feel right writing that. Caring is, after all something that we parents do. It’s on the list of necessary qualifications for the post of mother or father. Although as an aside, I think caring is still too often perceived as a gendered – i.e. feminine – trait, which is a disservice both to the women so often culturally expected to take on these roles whether they wish to or not and to the many men who are carers (as my grandfather was until my grandmother’s death) and for whom support seems so irrationally thin on the ground.

Of course I care for my disabled son, just as I care for his fighting fit older sister. But does that make me a carer? Back in January I was advised by a local Surestart Centre where I’d been attending a special needs baby group that I was and that I should register as such with my GP. I picked up the forms but couldn’t bring myself to fill them in. I left them out on the kitchen unit secretly hoping my partner would see them and an encourage me to complete them. Instead he said, ‘So that’s what we are now, is it? Carers. I thought we were parents.’

I totally understood and shared his suspicion of the label. Our son was under 1 at the time. Of course we had to do everything for him. Surely ‘carer’ was a more suitable label for others facing difficult, life-changing situations when typical family life is interrupted by accident, illness or injury, just as it did for my Mum when my grandmother was consumed by that most cruel of mental illnesses, dementia. Dementia eventually killed my Nan, just as I’m sure the strain of caring for her killed my beloved grandfather six months to the day before she died. The casualty list is even longer. Five years after my grandmother’s death, my mother is only just recovering physically and emotionally for this terrible period in her life.

By contrast, we were and are so very lucky. Boo’s challenges have been apparent from birth. They haven’t side-swiped us in quite the same way, although I still feel winded most of the time. For the moment, at least, and unlike so many other carers in the UK, we are able to spread the responsibility of our son’s care. My partner works; I recently (and with mixed emotions) returned to work. The two jobs enable us to pay for nursery for Boo for some of the week where others help us look after him. We are fortunate enough not to have to rely on carers’ allowance, although we know that might change.

The carer forms lay languishing for some time while I pondered what to do with them.  And then my own mental and physical health began to deteriorate quite rapidly. In addition to the depression and anxiety occasioned by dealing with Boo’s medical problems, I was suffering from constant, severe headaches and extreme exhaustion caused by Boo’s acute insomnia and the relentlessness of daily therapies and multiple medical appointments every week (sometimes every day). My back was, and still is, suffering from the strain of lugging around a 10kg+ baby who doesn’t bear his own weight voluntarily or consistently. It’s getting worse with every week that goes by. Bathing him has turned into an Olympic sport.

Who was I kidding? We were and we are carers. And the point of self-identifying as such, I belatedly realised, was that we are mentally and physically vulnerable as a consequence. We needed to be red flagged. Because when carers aren’t looked after, the consequences can be devastating.

Carers may need economic or legal advice, or even just the anecdotal wisdom of someone who has been there and done that. A person, for example, who can suggest you might try to bath your baby by putting an inflatable high chair insert into a laundry basket in the tub to help your groaning spine. Carers may need emotional support to overcome the crippling isolation that living so selflessly and intensely can make them feel. Other carers badly need respite, to recharge their metaphorical batteries, to rekindle all those relationships (with their partners, their other children, their friends) that of necessity get neglected in the hectic lives they lead, to remind themselves that they are individuals who are not solely defined by their relations to others.

Carers, in short, need caring for. More than that, carers deserve to be cared for by the communities they serve through their voluntary and often invisible labour. This may seem obvious, but sadly it’s not obvious enough that this doesn’t need saying now. Repeatedly. And very, very loudly!

As I can’t say enough, I am lucky. I am currently able to work. And exhausting though combining my domestic and professional responsibilities can be, work offers me collegiality, respite, a break. My paid work can involve long and antisocial hours and many would describe it as stressful. Let me tell you: it is a complete doddle compared to the work of carer. Because caring is work that really matters, that makes a big difference to individuals and to society as a whole. The stakes are unimaginably high and the rewards, though many and various, sometimes cannot completely compensate for the price paid by those who do the caring.

So this week, please do spare some time to think about the role that carers play in our society. In my experience of meeting many parents of disabled children over the past 12 months, carers warrant our utmost compassion but won’t want our pity. What they deserve in return for their selflessness is a commitment from us all to find practical and sustainable solutions to funding the support and services they and those they care for require.

It’s time to care for the carers.