Tag Archives: Cerebral palsy

A Tribute to Stacie Lewis

Two weeks ago I was sat with my family, who were visiting for Easter, watching TV. As usual, Boo’s sleep had been atrocious in the days before and I was struggling to keep awake. So I did my favourite alternative to matchsticks and caffeine: I went on social media on my phone to see if screen time would do that thing sleep specialists tell us it does and keep me awake.

 

It worked. I saw some devastatingly sad news: a notification from the husband of Stacie Lewis – Mama Lewis to many of us – to say that she had died after a long few years of living with leukaemia.

 

No words, of course, are adequate to convey the unimaginable sadness and downright unfairness of this terrible news. My first thoughts were for Stacie’s husband, Gareth, and their beautiful children, May and Ieaun. I then remembered fondly all the exchanges that Stacie and I had on social media and those all-too-few meetings in person. But what I couldn’t shake afterwards was an awful sense of all that Stacie would no longer be able to do with her family and friends, in her writing career – she was such a good writer – and in her activism. Stacie changed lives through her words and actions regarding disability. I couldn’t believe that she was gone; her death is a loss in so very many ways.
I met Stacie for the first time a few years ago in Westminster at the Parliamentary Inquiry into Disabled Childcare. By that point I had been corresponding with her for some months on Twitter, direct messaging and text. But I had known of Stacie for many months even before that. Immediately after Boo’s premature birth in 2012, I frantically started scouring the internet devouring every web resource and blog I could in order to get informed, to track possibilities for, and come to terms with, the new normal of a life we hadn’t expected even the day before Boo’s arrival. In the first few hours of his life I started googling “28 weeks” and “life expectancy”. Within days my search terms changed to “meningitis” and “sepsis”. And then came “severe brain damage”. That’s when I found Mama Lewis.

 

Like all the best writing, though, I felt that Stacie’s blog had found me. In her fiercely intelligent, infinitely compassionate and brutally honest posts about May and about being part of a family with a disabled child I saw a reality that I knew, deep down, ours would soon resemble. It was a prospect that frightened me, if I am honest. But Mama Lewis made me realise we could live it.
When I eventually met Stacie after so many months of exchanging tweets about our respective blog posts and life’s daily shenanigans, I was feeling pretty nervous. I wasn’t nervous about being in Westminster or of having to talk about the difficulties of accessing childcare and education for our kids. Telling the truth is quite an easy thing to do. But I was nervous about standing up with a group of women whom I had come to admire enormously, but whom I had never met outside the bloggersphere. I didn’t want to let the side down. We had important work to do.

 

I recognised Stacie immediately as she came up the stairs to the panelled room we were waiting in. She was wearing a gorgeous striped dress and a short, pixie haircut, a legacy of her most recent and apparently successful leukaemia treatment. She was fatigued from walking up so many stairs but looked well. Actually she looked more than well. She looked committed, petite but fierce and ready to do business. While others were introducing themselves to each other, I stood back, for the first time embarrassed by my online anonymity. It sounded so daft to greet people by saying “I’m Mrboosmum”. But when it came to my turn, that’s what I said to Stacie. “I need to see pictures of Boo,” she said. And so I showed her pictures on my phone.

 

In my day job – a day job, incidentally, I have been able to cling onto in part because of Stacie’s help at a critical moment – I am lucky enough to be surrounded by very intelligent people who are extremely good with words. But honestly, I will never again be with a smarter or more eloquent group of people than the women who gave evidence at the Inquiry. Stacie’s testimony was utterly compelling. Everyone – MPs, fellow parent-carers, advocates – listened in wrapt attention and tears in their eyes. These were not tears of pity – in my experience one of the least welcome emotional responses parents of disabled children can elicit – but of recognition of the injustices May and her family faced and the simple truth that Stacie conveyed so powerfully: access to education, good care, and an inclusive society should not be aspirations; they should be the reality.

 

Stacie pursued this conviction in every campaign she supported and often led, in every blog post she wrote and every article she wrote for the national press. And her words made a material difference in Parliament and in supermarkets that introduced accessible trolley seating, to give just two examples. She was a brilliant advocate not just for May but for all children like her, like Boo, and their families.

 

I will miss Stacie dreadfully. Her loss, of course, is and will forever be most profoundly felt by her family and her many, many close friends. I cannot imagine what they are going through.

 

Selfishly, I regret that our always fun meetings with a mutual friend after the Parliamentary Inquiry were too infrequent. I regret that I didn’t get to know her better than I had time to. I regret that she was too unwell to come to my 40th birthday last year when we thought it might just work out. I would have loved to see her dance, something we heard a lot about at her celebratory funeral last week. I regret that I cannot call on her wisdom in the future. And I deeply, deeply regret the loss of her presence and voice in the world in which Boo is growing up.

 

But I also know that those words are not lost. Many people have been sharing Mama Lewis posts in the pasts two weeks, as well as her articles for the Guardian and Baby Centre. I urge you to re-read them. I have been doing so and I find them as powerful and necessary today as I did on first and second readings.

 

Her writing still advocates. And there are many of us still who feel more urgently than ever after her death the necessity of continuing her advocacy, even if few of us can do it half as well as she did and would have continued to do had her life been longer.

 

Stacie Lewis’s blog, Mama Lewis, can be found here.
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Other days

Some days, when the sun is shining and I don’t expect it to and we have a good appointment (or better still no appointments), I feel unbelievably, superhumanly lucky. I feel lucky that I have two beautiful, caring and lovely kids. I feel incredibly lucky in these dark days to have a comfortable life.

I feel lucky that Boo survived his premature birth. Lucky that he survived meningitis. Lucky he survived sepsis and a massive brain injury (PVL). That despite the severity of his cerebral palsy he has words – indistinct and hard won words, but words, nonetheless. I feel lucky that he is so happy. That he and his sister adore each other.

But then there are other days. Days when people say or do stupid things because you live in a world as alien to them as Mars would be. Days when equipment breaks, or having waited for months for it to arrive (always months longer than you are promised), it comes with a vital part missing or bent by the courier who shows his disgust at the weight of your child’s parcel by banging it on your doorstep. Days when services tell you about how the most recent round of cutbacks will affect your child.

Days when you send umpteen emails chasing things for your little one that were supposed to have arrived or been put in place months earlier. Days when people tell you they will look into it and get back to you that afternoon. (You and they both know that means three weeks when you next contact them.) Days when you register that some of these people are upset by this sorry reality and that others don’t, or have learned not to, care.

Days when you cannot believe that you are still trying to get put in place one of the therapeutic provisions set out in your child’s statement 18 months after the reports setting out the requirement were first submitted. Days when everyone tells you how awful this is. Days when still nothing happens. And then to top it all, days when the lift up to your front door fails and two organisations argue about who is supposed to fix it while you and your child’s ability to get in and out of the house is precariously dependent on how much your back hurts.

Days like these are the cluster headaches of the special needs world. Everyone gets headaches – just like we all have bad days – but few can understand the head splitting intense discomfort produced by these monstrosities. There is no easy cure and if your sanity is to be preserved, to an extent you just have to accept these unpleasant realities.

But it’s hard to accept things that are bad, that even hurt, your child. Really hard. As a family, we have all learned to live with cerebral palsy. That was the easy bit. It’s all of this – all that comes with CP – that I will never get used to.

I know some day, maybe even tomorrow, I will feel better again for a while. But not today.

I am lucky, but I am also sad, disappointed and frustrated that life is like this for Boo and for many, many others like him.

Targets and other Torments

I’ve written on the blog many times before about the sense of weight and guilt that comes with Boo’s enormous long list of therapy goals. We have targets for physio, SALT, and OT not to mention our own private goals for Boo.

The lists are huge. Not metaphorically. I mean very literally. They are huge! They live on our fridge. Don’t use these as a diet aid, by the way. Seeing them on the fridge door makes me want to eat my body weight in cheese and double cream whenever I look at them.

I’m a list kind of person. I am what the self-help industry would call goal-oriented in my personal life. I have a long-term plan. I break it down into steps. I do my best to stick to the plan. And will usually flog myself until I have achieved what I set out to do.

But I can only help and encourage Boo. I can’t make his body do things it struggles with. And I have no interest in making his life any more difficult than it already is.

One of the biggest mental adjustments I have had to make since having Boo is letting go of goal-oriented me. For ages I tormented myself with the ‘will he walk’ question. No one knew, of course, whether this would happen or not, but most thought it unlikely based on the extent and nature of his brain damage. But then someone gave me a glimmer of hope. ‘If a child sits unaided by two there is a very good chance they will walk (maybe with a walking frame) by the time they are five.’

I wish they had never told me. Hope can very quickly turn into a stick to beat yourself with in this here life of ours.

I crippled my back trying to get Boo to sit before his second birthday. I was fixated on this happening before he hit 24 months uncorrected. When that was clearly not going to happen, I counted every darn day of his eleven weeks of prematurity and went for 24 months corrected. That date passed too.

Boo is now over 3. He still can’t sit unaided for more than a few seconds and cannot be left alone in this position. But we have just tried a new walker which we are hoping to buy and he steps in it in a way that makes the Grand Old Duke of York look like a complete amateur. Like all the amazing kids I have met since Boo’s birth, he just does things in his own way, on his own schedule. This is goal orientation Boo style and it is beautiful to watch.

There was a time when I felt the fading prospect of independent sitting with great sadness. Now I’ve adjusted. My sense of time is much more elastic now. I worry less about where Boo is relative to others. Frankly, that way madness lies and we celebrate each and every inchstone Boo meets whenever is the right time for him.

But of course, sometimes, I have a wobble and forget all I’ve learned. Children’s parties are a particular trigger (if he gets invited to them at all). Lugging Boo round a soft play for an hour the other week so he could join in while all the other kids ran hysterically like puffed out beetroots who had had a week’s sugar intake in a minute while their parents drank coffee and talked about the inequities of catchment areas was a weak point for me, and meant I couldn’t walk with a straight back for 48 hours. Sissyboo’s sports day last week was another.

And then there’s the biggy on the horizon. The milestone we can’t dodge or avoid. It will just have to be met by hook or by crook and whether he or we are ready or not.

School.

Next September Boo will start school. That may be 15 months from now. That may seem like an age. In special needs elastic time, though, it really isn’t. It really, really isn’t when you consider all the things that we would like to have set Boo up to be able to do before he starts school. There’s joystick control so he can (please, please let this happen) learn one day to move himself around. There’s potty training, so important for his dignity and for others’ perceptions of him (which will in turn, of course, affect him). There’s his ability to use an AAC device because he will never be able to write. And then there’s the four pages of A4 targets on the fridge.

It feels totally overwhelming. Impossible. Even with 15 months.

But it also feels imperative. We have to set him up as best we can. We just have to try our best to achieve these things with him. But we also have to let him be a toddler who can’t toddle, a little boy whose life can’t just be about goals, but has to be about living. About play. About fun.

I don’t know how to square this circle. I know that school doesn’t mean the therapy train stops (more’s the pity). I know that Boo will continue to learn (that’s the point of school, right?). I know (I hope) we have time to help him. But I also feel totally suffocated by the prospect of the next 15 months.

Have we made the right choice of school? Will we get that choice without a battle? Will our LA get their act together enough even to transition him to an EHCP before he gets there? Will we have done all we can to ensure he has the smoothest transition to school possible? Will it be enough?

I just don’t know. And that’s hard to deal with. Really hard.

Three little words

It’s been ever such a long time since I have linked up to the fabulous Small Steps Amazing Achievements or the life-enhancing weekend link up over at Love that Max. But that’s not for want of inchstones, here. There have been plenty.

No: the problem has been me. I won’t lie to you. I am really struggling at the moment. Really struggling. Hence the blog radio silence. The weight of appointments and admin and the huge hurdles in front of us at the moment around education, work and the many milestones that it seems ever less likely Boo will ever meet feels totally overwhelming. I try to be positive. And in the day-to-day when I am with Boo and playing with him I don’t feel so bad. Because I just enjoy him and being with him.

But in quiet moments (the only moments I can steal to blog in) I feel totally at sea and worried I am drowning. I don’t know how to swim to shore any more. It is horribly disconcerting.

It’s hard to summon up the wherewithal to write about Boo’s achievements, no matter how proud I am of them. And I am. Because for every inchstone met, there are a dozen milestones receding into the distance. Just two minutes ago I put in an application for mobility DLA (Disability Living Allowance) for Boo. I can honestly say it is one of the most heartbreaking documents that I have ever had to write. The catalogue of professionals and list of all the things he cannot do is just too much to contemplate.

But what I know deep down, even if it is hard to summon up this feeling in these rare, dark quiet stolen moments is that the feelings of desperation I feel on his (and if I’m being totally honest, mine and his father’s and sister’s) parts make it all the more important to chronicle and celebrate his achievements.

And this has to be the biggest of the past few months. Speech.

Now don’t get too excited and think he’s reciting the Gettysburg Address all of a sudden. Or even a single sentence. But Boo’s speech is still coming on a bundle. Words he had before – ‘Mum’, ‘Dad’, ‘up’ (meaning: pick me or else, Mum), ‘go’ (meaning: why are you so blinking slow at everything, Mum?), ‘yeah’ and his current favourite ‘no’ – are so much more distinct. And he has got a pretty impressive range of other phonic sounds now, most of which he will say on sight of the relevant jolly phonic flashcard. We are still struggling with s, z, v, z and h but we hope they will come with time.

And he has all of his vowel sounds now: the last one ‘ee’ arrived out of nowhere one day just before Christmas. He still struggles to put these sounds together. He can say ‘p’ and ‘l’ and ‘ee’, for example, but if you ask him to say please he says ‘eeeeeeeee’. But it’s a mighty strong start nevertheless.

It’s all about putting the building blocks in place and seeing where we can get with them. Building up from sounds to single words. He has new ones every week or so at the moment. A new addition is ‘ewlp’ meaning ‘help’. My personal favourite, because it is always said with a cheeky smile on his face, is ‘I duck’ meaning ‘I’m stuck’, which is code for I’m a toddler get me out of here! I can’t wait to hear what comes next! Once you have words, it’s all about putting them together of course. And Boo is trying out that fun game: ‘Mum, go’, ‘Mum, up’ are the soundtrack to my life. And there are some even more impressive strings of words coming along. The other day I was singing the title music to Something Special (to myself, not Boo, you everyone does that, right?) and I got as far as ‘Hello, Hello’ and was about to launch into ‘how are you?’ when I heard Boo at the other end of the dining room say ‘ow ar oooooo?’ at which point he burst into hysterics at his own amazingness. I squealed so loudly Sissyboo said, ‘Do we need to phone the hospital Mummy?’ Where did that come from?

But best of all is the way that Boo is mimicking speech patterns. Boo does everything in his own way. He isn’t going to follow the whole, phonics, words, sentences, conversation logical progression any more than he is going to roll, sit, stand, walk, run. No, he may only have 20-30 or so words, and have lots of sounds he cannot say at all yet, but he is still trying to replicate the patterns of words and phrases he hears. So if you say ‘garden’ to him he will repeat: ‘ah’ ‘ah’. Two syllables. Two sounds. If you say ‘that was good’, he might say ‘a ah ooo’. It’s very sweet.

But nothing is sweeter than the three little words he has been saying for a few months now. Words he has heard an awful lot since he was born so very, very early: ‘Ah. Uv. Ooo’ (‘I love you’). The first time he said it, I cried. The first time he said ‘Ah. Uv. Ooo. Mum’,

I cried. Of course, I knew he loved me, his dad and his sister before he told us. One of the many things Boo has taught me is how we communicate in so many other ways than through speech and writing. No: I cried for a whole bunch of other reasons. Because he had hit his mark and progressed with his speech at a time when many physical milestones seem more remote than ever. Because it was such a physical effort to arrange his body in such a way as to produce these sounds. Because when he was only 2 weeks corrected age an utterly unfeeling prematurity paediatrician told me my child would likely never speak at all.

In my dimmer moments now I feel like I am back in that awful appointment over 2 and a half years ago. And so I replay Boo’s words in my head and realise that he has made a future for himself that is so much brighter than anyone predicted. And for that, I am very grateful.

Coming together

Blogging is my sanity saver. I blog to connect with others and as therapy. I blog to work through my irrational guilt over Boo’s premature birth and disabilities.

But sometimes blogging compounds the sense of guilt I can never give up on. Partly it’s because I feel guilty stealing moments of the day to do this when I could be doing more work, making flashcards, sourcing equipment, or reading about surgeries and therapies. Partly it’s because I feel I dump too much here. This is, frankly, the only place you get the real me. The warts and all how-I-feel-about-life me. It’s a place where I can say the things I can’t, won’t or don’t say elsewhere and, inevitably, that means it can be balanced more in favour of the stresses, the battles, the stuff that stops me sleeping at night. The me who has to fend off depression and anxiety.

And that me, I worry, from this blog’s readers point of view, must seem terribly embattled. That me, I worry, might seem like someone who whines and complains a lot. Well, I guess I do and am these things. But outside the blog that me is tempered by my sense of pride in Boo and his amazing big sister, by my incredible capacity for self-censorship, by the fact that I want and often am an extremely happy person.

And that me is not separate from special needs parents me. Special needs parent me finds joys in life that I couldn’t have dreamed of before having Boo. I know this will sound horribly trite, but it’s true: I have an appreciation for life, for the amazing capacity of human beings and their bodies and minds that I just didn’t have pre-Boo. I have also met the most wonderful children and parents in the past 2 years, people who should really write in to the OED and tell them what hope, tenacity and determination really mean.

One thing I particularly worry about is that people who read this blog might think reading all my posts about battles for equipment and services and therapies is that I am not grateful for all we have: the stuff without which our difficult lives would be impossible and the interventions that have already made such a difference to what Boo’s life and what it will be like in the future.

And today I was reminded about how incredibly grateful I am for many of the professionals involved in Boo’s life. The people who care, love and hope for him alongside us. Because these people do exist.

A few moments ago, I was surrounded by three of them. I went into Boo’s nursery for a joint OT-physio-moving and handling appointment. Joint appointments are the holy grail of special needs life. They are like gold dust. Boy, do they make a difference. Joined up thinking. Linked services. If only they could happen more often.

Of course, I was really worried about the appointment beforehand. Nursery are clearly and understandably worried about managing their own health while looking after a largely non-independently mobile Boo. I knew pre-meeting conversations had included the words ‘hoist’ (not a bad thing, but Boo can do seated transfers so I wasn’t sure we need them… yet). I was worried it was going to be another ‘we love Boo, but it is a pain having him here’ conversation.

And I knew Boo would be far from his best in the appointment. We are now more than 2 weeks into Boo’s non-lycra suit period while they adjust it for growth. The difference between him in it and out of it is totally staggering. He is a different child. No aspect of his life (except his smile and even that is waning) is the same without it. He dribbles constantly and has a terrible rash. He can’t speak as well. His head control is compromised. He can no longer sit even for the few minutes he could manage before. He cannot use his walker or Whizzybug. This appointment was going to be tough.

I gave myself a good talking to before I went. His lovely physio said it was a good thing that moving and handling were seeing Boo at his worst as it would ensure maximum support. I smiled as my heart sank.

But the moving and handling advisor was a breath of fresh air. She looked at Boo. She watched him closely. She saw how he reacted to conversations around him. She could see he has great understanding. She listened to what we said he could do, even if he couldn’t achieve this easily without the lycra suit. I didn’t feel, as I often do, that I had to persuade her to see Boo as I do. She got him pegged in about 10 minutes.

No problem or issue that was discussed fazed her. She had solutions (practical and easy) to address each one. And she kept repeating the same sentiment. Boo is a bright child. He is motivated and wants to be as independent as possible. We need to use every opportunity to help him achieve that. There is no need for a hoist yet. He needed to be doing seated and active transfers throughout the day, each one of them helping to make him stronger and more in control of the world around him.

Few appointments I have been to in the last 2.5 years have been so positive (and there have been hundreds and hundreds of appointments, I kid you not, in that time). At one point as the three professionals talked amongst themselves while I played with Boo I had to tell myself not to cry. Not through the tiredness and frustration that often gets me down but in recognition that these three talented and caring women were talking not about what my little boy can’t do but all that he can and will. They talked about his determination and his many physical and mental strengths. And they had all come together to help him achieve that.

I can’t quite put into words the gratitude I felt in that moment. That people want to help. That people can see Boo as we do. That they don’t see obstacles but hurdles that can all be gotten over or around one way or another.

I couldn’t let this moment pass without recording it here. Partly because few days are like this and I can see many others in the future where I will need to remind myself of this one. And also because I want to tell all of you what I sometimes forget to say.

You know, Boo’s early arrival and complicated life since has taught me many things: humility; patience; that I have hidden reserves of energy and determination. It has also taught me gratitude for him, for those that helped him survive and continue to help him thrive. It’s a gratitude more profound than I ever thought it possible to feel and runs just as deep as any misplaced guilt I feel.

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.

Fighting Talk

On Saturday, like every Saturday, I took Boo swimming. It is one of the highlights of my week. He’s such a water baby and to see the incredible joy he has doing things in the water that he can’t do on dry land is just … well … so amazing words fail me. But this Saturday, I wasn’t so excited.

You see we were with a different group of kids and parents for the new class term. Boo is at the limits of what he can do in this mainstream class, which now involves diving off the side and running on a float. So we can’t yet move any further forward. I suspect we’re at the end of the line of these lessons. I mean, Boo can’t even sit on the side safely. But his teacher is brill and we adapt things. We decided to repeat the level we have just done with a new set of parents. Boo wouldn’t care he was repeating and it would be good for him.

But I was dreading it. There would be the looks from parents who didn’t yet know him. The explaining to do about why my little boy can’t stand. The questions to answer. The ‘what’s wrong with hims’.

We had some curious, if well meaning, looks throughout the class, but it went fine. As we were getting ourselves dry afterwards a parent asked if we were new to the class (clearly her way into finding out what Boo was all about, I think). She was nice and I just explained why were we repeating the level. I told her that Boo loved swimming and since there’s no hydro in our area and no special needs classes for kids his age locally we were sticking with mainstream lessons as long as we could get away with it.

The another Mum joined in. There was something about the way she spoke to me that made me understand that she lived in or on the periphery of our special needs world. You can always tell. She was confident in our company; she looked at Boo unfazed. Either she knew a child with additional needs well or worked with them. I just knew. Thirty seconds later all was revealed when she said she was an Educational Psychologist (or EP to those of us who live in this world of SEN acronyms). She was infuriated that Boo doesn’t get hydro. In her area, just over the border, she explained, Boo would.

And then she tried to spur me on. ‘This is just wrong. But it is about Boo’s needs you know. If the NHS doesn’t fund hydro in your area, then you should fight them. If your physio supports you, get her to write on your behalf to force them to provide access to a private pool. It’s discrimination. Honestly, the parents who fight the hardest and shout the loudest get the most for their kids.’

If I’d had a pound for every time someone had said this to me since Boo’s birth…

Of course I’ve looked into ways of accessing hydrotherapy. And of course his physio supports us and would testify to the benefits for Boo. But he furthest I’ve gotten in pursuing this is to be given the number of a private physio who charges an eye watering per hour fee for hydro once a month (and we pay a small fortune for swim lessons now, let me tell you).

I thanked the EP for her advice and support and explained that I would get onto it, but that we were fighting two other big battles at the moment (statementing and social services over house adaptations) so it wasn’t at the top of the list. She understood. She knew how hard it was. ‘But keep fighting’, she said.

I left feeling grateful for the kindness of strangers.

And sad. Really, really sad. I tried to work out why and think I now have.

You see, I realise that I have had it with the fighting talk. Absolutely totally and utterly had it. Don’t get me wrong, we have had to fight for virtually everything for Boo: to get onto waiting lists; to get Boo off them to actually see someone; for virtually every piece of equipment he has, including his Bee seat (that fight nearly broke me) and his adapted buggy; to get him 1:1 support in nursery; even down to getting a bloody pair of Piedro boots. I could go on.

Of course, we’re not alone in this. You need only look at the special needs equipment online forums to see how hard people have to try and how much money they have to save to buy even the basics in our children’s lives. These forums are totally great – I use them a lot myself and have bought lots of essential kit for Boo from them second hand. But they are also incredibly frustrating and occasionally downright uncivil.

Here’s a common scenario. Parent A at the end of their tether waiting for something they have been told is essential for their child’s health and happiness asks if anyone has one to sell on said forum. People jump in and say no but express sympathy with Parent A for the ridiculousness of their predicament. Then Parent B jumps in and points out, in the spirit of helpfulness, that Social Services or their PCT should provide this equipment free of charge. Of course Parent A knows this and has already exhausted all lines of enquiry. Parent A explains this. Then Parent C comes in and says Parent A should fight harder. They should make them get it for their child. Parent A either answers back that their LA or PCT doesn’t work like that or silently crumbles.

Because you know what? There is NOTHING national about the National Health Service. And you cannot emphasise the LOCAL in Local Authority enough.

Now I know everyone is trying to be helpful, but I wonder if we are, really. Of course, we are parents. Of course, we would do anything for our kids. Heck, in my darkest moments with Boo, when we didn’t know if he would survive or not, I begged any god that would listen to let me die if he would only live. Of course, we will fight for them. But is this fighting talk helpful?

I remember talking about something similar (although in other ways very different) with a friend who had a close relative in the advanced stages of cancer. She hated the fighting talk too. Her relative would not win this particular fight. That didn’t mean she wasn’t the most poised and determined of women. That she didn’t cope with her appalling situation with a courage I don’t know that I could ever possess.

Here’s the truth: the language of fighting turns us into winners and losers, because that’s how fights go. This cannot be right. Surely, we are in this together.

What if you can’t persuade the LA to support your child in nursery? What if you can’t get them to buy your child Piedro boots? Are you a bad parent? Is it just that you haven’t fought as hard as everyone else? Of course not!

And you know what really gets me? What really, really gets me? It’s that we have all internalised this language of fighting so much, become so embattled in our special needs world that we accept it. This is as true for me as anyone else. My last post about our statementing debacle was called ‘Let Battle Commence’.

Today I want to look at things differently. Today I want to ask: what is so wrong with this world that simply tending to the need of some of society’s most vulnerable people has become a battleground?

The minute we start using the language of fights and battles we become part of the problem, turning our lives into a survival of the fittest (for fittest read: most vocal, most persuasive, most legally minded, most litigious, most desperate) parents for the sake of our kids. This cannot be right. Can it?

But I fear it cannot be undone either. I wrote this post because I feel I’m done with fighting (I’ve always preferred the more American sounding word advocating anyway). Because I am battle weary. But I can’t let Boo down. I have to press on and charge ahead. And the minute I stop writing this post, I have to write a covering letter to our Local Authority about Boo’s draft statement, which will quote case law and the Equalities Act and which will be laden with fighting talk.

And you know what? I hate it. I wish things were different. I wish I knew what to do about it. I suppose the only thing we can do is make sure that our battles with systems don’t force us to battle with other parents like ourselves.

Each battle for every one of our kids has to been as a battle for them all. Otherwise, what price victory?