Sunday, 16 November 2014
Apologies for the length of time since I last blogged, but life has thrown us a few curveballs and I have been up to my armpits in uni stuff. Studying psychology is fab, and the actual work itself is manageable; it’s the juggling act I have to keep doing with everything else which makes life a little more than tricky. I can’t afford to take my eye off any one of the countless balls for fear it all comes crashing loudly down.
As you are probably aware Children In Need happened this past Friday. This is an amazing event highlighting the plight of many families up and down the country who, for varying reasons, find themselves struggling. This year’s theme was Superheroes, and I wanted to focus this blog on the superheroes in our world that help keep our lifeboat afloat in this crazy storm we call life.
The last few months have significantly changed our outlook. B has been struggling with epilepsy on top of all his other conditions, and the stress this causes is immense. First up, no parent can watch his or her child suffer day in, day out without it taking its toll. Honestly, there are days I find myself dreading spending time with him because I don’t know how many tugs my heartstrings can take before my whole heart comes unstitched. Twice daily we need to administer meds, which constantly change depending on what we think is being effective, and what we think really isn’t. B is highly uncooperative when it comes to this, and I can literally feel the adrenaline coursing through my body as we approach him with the drugs each day. It’s like a sick, twisted version of Russian roulette, except there’s so much more at stake than simply money. Then there’s the guessing. Why is B suddenly chewing on everything? Why is he falling over constantly? Is the crying because he feels rough from drug side effects or rough from seizures? How long do we try with meds before giving up? Will any medication actually work? Are we effectively recording all his seizure activity? Are school on the same page? Have we trained his carers appropriately? And the list goes on, a myriad of questions we have to ask, but often aren’t ever likely to know the answers to.
The charity single came on in the car this afternoon and I cried because it summed up exactly how I felt. ‘Wake me up when it’s all over, when I’m wiser and I’m older.’ I feel too small, too little, and frankly not at all equipped to manage my life as it stands. If I could hibernate and wake up when it was all sorted, I would be so tempted to take that option. But unfortunately that isn’t an option, so I’ll crack on, firstly by acknowledging all the current superheroes in my life. Thanks guys.
B, you are a true superhero. You endure more than we could ever know, and still we see you smile. You try your best to communicate, sorry when we just can’t seem to get it. Amazing job buddy, you rock.
Siblings, what can we say. Your life, unlike so many other children, centres on not you, but your beautiful brother. You show no resentment, you display endless compassionate understanding, you help out and D, you even let me cry on your shoulder on Friday with the utmost empathy. Wow. Superheroes all the way.
Carers, you put up with so much, and still you come back again and again to spend time with our boy. To you, it’s so much more than a job. B has won a place in your hearts and you treat him with the dignity and respect he deserves. You see beyond the biting and scratching, beyond the frustration, beyond the seizures to the little boy who melts your heart in the school corridor when he runs over and recognises you. You love him. You are superheroes to us.
Real friends, you are superheroes. You know who you are. You are the ones who cry with us when we’re too exhausted to put words to how we feel. You walk with us, even when it’s messy and it’d be so much easier to just step back. You listen without judgement and you keep on loving, knowing you’ll never ‘get it’ but wanting to at least try. You understand when we bail last minute on arrangements… again and again. You wait in the wings, ready to spring into action should we need dinner, or a drink, or someone to be with us while we rant about how unfair it is, how we’re tired, how the system utterly sucks.
As I sobbed my way through Children in Need on Friday night I realised I’d hit an all time low. I’m angry that my boy has to suffer; angry at the impact it has on him. I’m stressed to the point of feeling physically sick, I can’t sleep, and I HATE the impact B’s condition has on our entire family. EVERYTHING is difficult. It’s all encompassing, and coldly isolating. Tiny routine tasks are consistently mountains to be conquered every single day. The unpredictability is unnerving to the point of constant fight-or-flight, which in turn physically drains every ounce of energy from our bodies. Sleep is flighty when it comes at all-our brains constantly processing our crazy life.
As the stories unfolded I noticed a definite theme emerging. For kids who suddenly become ill, there is a lot of support out there. Probably never enough, but there are networks designed to connect families with others going through similar situations. The social gatherings at hospices for children with terminal cancer, and the support groups for families who have tragically lost a child. I’d just like to add in at this point I am fully supportive of such groups, believing them to be of infinite importance in the health and wellbeing of such families. I can’t even imagine that journey, and I hope I never have to. As society we support acute occurrences fairly well, maybe because there’s an endpoint, or maybe because they generally need less time and resources overall. But the chronic? That seems to be a different thing entirely. How do we react to the elderly family member diagnosed with dementia, or the child with autism who will be forever tricky? Or in our case, the rare chromosome disorder which brings with it multiple strands of chaos, most of which are not curable and do not have a defined finish.
When B got his chromosome diagnosis around 30 months, most people didn’t know what to say. So they said nothing. Of those who did respond, we had some cracking comments, some which hurt beyond belief at a time we were particularly vulnerable and sensitive. Responses that belittled our pain and spoke of over-reaction. Suggestions of putting B in a home and starting over. People asking if we knew while we were pregnant, as though if we had we could have done something about it. It helps me to think about these reactions as borne out of ignorance, without any malicious intention, but it still hurt.
B was recently assessed by the NHS to need a high amount of care, and as such, we now have a package in place which helps to meet his wide medical needs with extra people power. I got to thinking why I still felt so crap since all this support had been put in place, and it struck me like a thunderbolt. It’s not just the day-to-day chaos of making sure B’s (and the other kids) needs are met. It’s the overall social isolation; the horrible feeling that there is no safety net of support. We can’t go on family outings with other families. The topics on our minds are not exactly conversation starters. Nothing is ever predictable so we spend our lives bailing on the few plans we have made. As far as I know there are no support groups or social gatherings for people in our situation. We aren’t great company, mostly because of constant exhaustion, so regular people tend to give us a miss. Understandably of course, I mean who wants to hang out with a family who come with as many complications as ours? For a natural extravert like me, this shit is tough.
But instead of ending on a sour note, I wanted to give you guys some practical tips. How to be a hero for a family like ours. By the way, I’m not fishing for you to specifically help us, I just reckon the more generic information out there, the better the chances for families living with the chronic, long term instability that disability brings to the very core of our beings. So here they are, my top superhero tips. Enjoy!
1- Be interested.
We spend our lives trying to get professionals to ‘hear’ us, and contrary to popular belief, we need to know other people understand too. Please ask questions; any opportunity to enlighten people about the whys and hows of B is always grabbed with both hands.
2- When you don’t have words, do.
If you don’t have any words, that’s fine. In fact making a choice to say nothing rather than roll out some crap cliché is a much better call. In which case, do. A hug while we cry on your shoulder or a hot cuppa can work wonders.
3- Listen to understand, not to fix.
This is a biggie. So many well-meaning people I talk to try and ‘fix’ my shit. They try and jolly me out of being sad, or they tell me how I never know what will happen in the future, or that things could always be worse. This is something they do to make themselves feel more comfortable, not to help me. I get it; it’s tough listening to the hard bits of someone else’s life knowing there’s not much you can do about it. Imagine LIVING that life. Please just listen without judging or trying to fix us. We know we’re broken, and your attempts to fix us just make it worse.
4- Offer to do something specific.
This is a super practical tip. ‘Let me know if there’s anything we can do to help,’ is a frequently overused phrase. In amidst the roles of advocate, nurse, driver, trainer, employer, mum, teacher etc etc we don’t have time or effort to think through exactly how it is you could help. Just tell us what you’re happy to do. And be specific, the less thinking we have to do, the more helpful you will be. ‘We’ll leave dinner in the porch on Wednesday’ triumphs over ‘Can we bring you dinner sometime?’
5- Drop over and take us as you find us.
I personally crave interaction with fellow people, the extravert in me is somewhat crushed by this regimented life. Our door is always open for visitors so please feel free to drop by at any time, just give us a ring first so your trip isn’t wasted if we do happen to be out. And once here, ignore the chaos of dirty nappies or children having meltdowns and just be with us in it. Oh, and make your own cuppa!
6- Don’t make us feel bad when we forget your birthday or have to cancel plans.
We are all too aware how crap we are in the commitment department, and I promise you it’s not through lack of wanting to. Remember we’re constantly limping through on reserve energy, and annoying as it is for you that we often have to bail, it’s infinitely more frustrating for us to miss out on fun stuff, and be ‘that’ friend/family member who forgot an important date. Again.
7- Love our kids.
This one’s fairly obvious, but please love ALL our kids, not just the ones that are easy to love. Try and talk to B, even when you get no response back. Try and engage BH even when she throws a wobbly right in your face. Often the kids that get the least attention from outside the home are the ones that need it most (that’s definitely the deal with ours anyway!)
Thanks for letting me share. If it takes a village to raise a child, it takes a city to raise a disabled child.
Cities can be the loneliest places in the world.
Please be a hero to someone this week.
Wednesday, 22 October 2014
OK, so a few people have expressed an interest in the exact base level nature of B’s disorder, right down to what precisely it is that causes him to be so different from all of us neurotypicals. Neuro=to do with brain; typical=usual, regular, common- sorry folks, in the world of genetics you and I are pretty damn boring. Let’s picture an ice-cream sundae. Proportionately us neurotypicals would be the ice cream and the special atypical a=not, typical=see above lovelies the sprinkles. So first up, people with B’s condition are RARE. The prevalence is estimated to be around one in thirty or forty thousand. So, for every 40,000 babies born, 1 might pop out like B. To give you an idea in real terms, Down Syndrome occurs once in every thousand births, DiGeorge (considered a relatively rare chromosome disorder) occurs once in every four thousand births. You can see where I’m going with this. If I asked you how much information you know about cats you would probably reel off ten facts without an issue. Furry, annoying, crap all over my flowerbeds, come in a range of colours, make nasty screeching noises when they get down and dirty etc. Let’s try the same thing with the Indonesian civet. Unless you are a closet junior bake off fanatic (I’m out and I’m proud!) or you happen to own an exclusive café company, you’ll likely have no idea what I’m talking about. The civet is a cat-like creature famous for it’s expensive coffee producing shit. Yes, literal brown stinking shit. It eats coffee beans and they reappear hours later, magically transformed into the world’s most expensive coffee, cunningly disguised in the form of plain old shite. Gives a whole new meaning to the world’s crappiest cup of coffee. Anyway, I digress. My point is the rarer something is, the less we tend to know about it. Rarity and uniqueness in this context sucks.
OK, second up, B’s condition is a clinically identifiable syndrome. Clinically identifiable=recognisable by defined and consistent medical observations, syndrome=a combination of common symptoms specific to and indicative of a certain medical issue. Duplication 15q syndrome is suspected when an individual exhibits certain characteristics universal to the syndrome, and confirmed with a specific blood test to determine karyotype. Karyotype=the number and appearance of chromosomes in the nucleus in a cell.
Individuals with dup15q syndrome have a different genetic make-up than you and me. We have 46 chromosomes chromosomes=threadlike structures made from DNA in each cell in our body. They are arranged in 23 pairs, and on that sweet, unforgettable night however many years ago your dad generously donated the yin of each pair, and your mum matched his generosity and donated the counterpart yang. Ta-da! Nine months on and a baby human emerged, complete with 46 chromosomes in each little building block cell. Cell=the smallest structural unit of a living thing.
Sometimes, this amazing process of mixing and matching goes a little bit haywire. There is a lot of speculation on why this happens, but currently every idea remains firmly in the theory camp and has yet to gather evidence to cross that bridge into fact territory. What we do know though, is it occasionally gets screwed up. In the case of B his chromosome number 15 from me decided to go the extra mile and copy itself. More specifically, an area of chromosome 15 copied itself 4 times. ‘Dup’ is a bit of a misnomer here, but it infers the idea of duplication, or too much. So dup=too much, 15=the chromosome that has too much material, syndrome=see above. Don’t worry too much about the q part; it just refers to the specific location on chromosome 15 where the copied bit originated from. I hope I haven’t lost you yet, bear with me!
So every individual diagnosed with duplication15q syndrome shares one thing in common- they all have too much chromosome 15 material floating around in their cells. Here’s the bit that gets even more complicated. The amount of material that’s copied loosely correlates with the severity of that particular individual’s symptoms. Loosely meaning it doesn’t always work out that way. If you think of chromosome 15 as a toy train track with lots of different segments, there is one particular segment, which seems to be more unstable than the others. More unpredictable. It’s kinda the anarchist rebel headquarters of chromosome 15. This region contains genes genes: segments of a chromosome that give instructions to control physical features of that person; eye colour, brain development, hair thickness etc. which seemingly have a big impact on a person if they are messed with. It even has it’s own name since it’s so infamous in the genetics world. The PWACR. How very rock n’ roll. In dup15q people this rebel section (the PWACR) has gone it’s own sweet way and copied itself; sometimes once, sometimes twice, sometimes multiple times and depending on how it was feeling at the time did it one of two ways. Either it made a separate impressive new mini-chromosome, complete with pretty mirror image upside down copying, or it decided to stay within the original chromosome and try and sneak an extra copy in unnoticed. It seems to like doing the first pretty thing more often. When an extra copy is made within the existing chromosome it tends to be a carbon copy of the rebel section without all the upside down and mirror image nonsense. So people with the condition can have either 47 chromosomes (with the impressive pretty extra rebel section making up the 47th) or they can have 46 (with a sneaky extra rebel section snuck in number 15).
But you know us Parrs; we don’t do things by halves. We had to go one step further, and this is no exception! B has a combination of both of the above, never before recorded in the UK, a stand alone first on the British genetics database. Apparently his rebel headquarters was extremely indecisive on the whole section copying issue, and ended up copying structurally as an extra chromosome (the pretty mirror image upside down thing) but remaining within his original chromosome 15. We just can’t help but be different- it’s in the genes. Do you see what I did there? Moving swiftly on…
What does all this mean? Well, in all honesty we are a long way from fully knowing. What we do know though is that the extra material messes up the instructions from the genes, creating havoc in the growth and development of a person right from that initial yin-yang moment. The classic symptoms of the syndrome are low muscle tone (floppiness), sensory integration disorder, autism or autistic tendencies, certain physical features (all our kiddos are incredibly gorgeous), epilepsy, attention deficit issues, lack of speech or communication problems, and learning difficulties. Some kids are more severely affected than others, and it’s not always easy finding universally appropriate interventions because a thousand other factors come into play too- what type of personality a child is, or how much money their parents have to throw at new therapies for example. One thing that is abundantly clear; as parents we have had to become experts on our children. We’ve learned to communicate without need for words, to understand the subtle intonations in our child’s frustrated behaviour, to differentiate a seizure from a stim, to believe in ourselves as the specialist on our child. And when the whole world seems oblivious, that shit is pretty damn hard.
I’m hoping by writing this, maybe a little corner of the world will be a little less oblivious, and accept people regardless of their disability. No amount of therapy or medicine will ever be able to ‘fix’ B; his condition is inseparable from who he is. That extra genetic material is in every single cell of his body. The seizures, they suck. The frustration of him not being able to communicate? I’d take that away in an instant if I could, along with all the other crap that causes life to be so much harder than it should be. But I don’t think he needs fixing. The typical worldview on disability? Now that could do with some definite attention.
Friday, 5 September 2014
Right now I’m taking a break from the copious amount of admin I seem to be slowly drowning in and coming up for air via the snorkel of this blog.
First up, I’m proud to say WE SURVIVED! By survived I mean we got through the full 60,480 minutes of the school holidays in one piece; alive, breathing, and relatively unscathed. I wouldn’t go as far as to say we got through it well, that would be an altogether different scenario. The reality is the matrix of destiny (aka the calendar) that dictated who was where at what time and for how long left its inevitable imprint on our uber tolerant children. Like a game of human Tetris any deviation from the perfectly tessellating plan resulted in it all spiralling out of control pretty quickly. D and O were fairly amenable, but BH did not take kindly to being shunted about like a heavy piece of luggage. Holidays for us do not equal lazy lounging days or fun spontaneous day trips. They involve a carefully executed master plan of action, involving a juggling act with lots of lovely carers to ensure B’s 1:1 support needs are met at all times. Mostly it isn’t all that fun, and it leaves a constant bitter taste in my mouth that I am failing someone somewhere along the line, which in reality, I probably am.
I can’t begin to explain the frustration of knowing the parent you are capable of being versus the parent you actually are due to the shitness of your circumstance. But then, we all have our limitations. I mean, we could all be these perfect parents if only… if only we had more money, or if only we had more family support, or if only our kids were less like little shits, or if <insert personally appropriate situation here>. So why do we beat ourselves up by conjuring up the mythical if-only version of ourselves and pinning it firmly to the fridge of life where it perpetually haunts us, reminding us of the shiny life and kids we might have had. If only.
I call bullshit on the if-onlys. The life we have is the life we have, warts and all. Now some of my friends would get all philosophical at this point and tell me that everything happens for a reason, including the nasty bits of existence. I hate to be the person to shake it up and cause controversy (gasp) but I call bullshit on that too. Here’s why.
I recently read a FB post from a dear friend who also has a child with B’s condition. In it she detailed the differences in the detail of a typical child returning to school after the long summer break, and one of our kids returning. It honestly broke my heart, mostly because her boy also struggles with seizures like B, but also because key times like this (back to school, Christmas, birthdays) act as a spotlight on that mythic if-only fridge picture.
Our morning goes a bit like this; we still have to dress our kids for school because they can’t do it independently. We have to tally the number of seizures our kids have each day. Let me say that again, we have to tally the number of seizures B has because it is the only feasible way of recording the vast numbers he experiences. We have to feed our kids breakfast because they can’t do it themselves. We start the day with no clue as to what is going through our kids heads, and we end the day no closer to any understanding. We watch our kids seize multiple times before the school bus arrives, always watching carefully to decide if we need to take any further action. We play medication Russian Roulette religiously every morning. We constantly shun our other children because we are too busy preparing the paraphernalia around our special kid; writing in the home-school communication book, observing and recording behaviour, gathering the meds, change bag, and anything else needed for the day. We (try) to use the cue cards to prompt our kid as to what happens next. And so the list goes on.
I call bullshit on the if-onlys, and I call bullshit on the everything-is-for-a-reasons. It is what it is. Do I learn and progress? Of course. Does this crap make me a better person? Probably. Could I have learned those things without losing my little boy one seizure at a time? Definitely. Do I love my kids but wish it were different? Yes, yes and yes! But like I said, to a greater or lesser extent, don’t we all wish it were different? I suspect so. So friends, stand with me today in a unanimous middle finger raise to the if-onlys and the everything-is-for-a-reasons. Grab this little bit of life right now, minute-by-minute, day-by-day, beautiful bits, beastly bits and all.
‘Yesterday is gone. Tomorrow has not yet come. We have only today. Let us begin.’
Tuesday, 26 August 2014
So today would have been my mum’s fifty-sixth birthday, but she never made it this far. For whatever reason, she had to go at the tender age of fifty-four and a bit. It also happens to be my daughter’s ninth birthday- I can never quite decide whether that was poor planning on my part, or a decent hand well played by Fate. We ate cake for breakfast, made pancakes, and I waved O off as she merrily left to visit her grandparents. I hung out with my little sister; we had lunch in a café we occasionally visited as kids, that happened to be re-opening today after a lengthy refurb *cue spooky music* bought flowers and took them down to the river where we launched them one by one (speedily-sorry mum) in the pouring rain while saying ‘Happy Birthday’ in as many different accents as we had flowers. We know how to live, the little sister and me! The ducks were none that impressed when they quickly realised that the lilies weren’t the bread they’d been holding out for, but other than that a fairly un-sad and successful trip. They say time is a healer and that would seem to be true, at least in this case. We still both miss her on a daily basis, but remembering her doesn’t hold quite the same sting anymore.
In other news we are struggling on an epic level with our five-going-on-fifteen year old. I’m fairly sure anyone who knows me would say I was a pretty chilled parent; I have that whole opposite of control freak thing going on- some may call it ethereal, others just disorganised. I try my best to let the bad behaviour pass me by, I am NOT a fan of supernanny, and if you asked me the value I most want to encourage in my children, it would undoubtedly be free-thinking. Martin Luther King, Elizabeth Cady Stanton, Florence Nightingale, Mary Seacole, Emmeline Pankhurst, Mother Teresa, Sigmund Freud, and many others- examples of incredible fearless people who valued individuality and human rights over any of the constraints society and culture shackled them with.
As Henry David Thoreau once put it “Disobedience is the true foundation of liberty.” I totally agree with this. And yet, what the heck do you do when that free thinking person happens to be your little shit of a child? She questions everything, and I mean everything. When I ask her to please do something, she asks me why, thinks for a moment and then makes an informed decision, mostly to the tune of no thanks mum, piss off. Thankfully she doesn’t know any swear words yet, so hasn’t actually ever told me to piss off, but I don’t reckon that particular issue is too far round the corner. She went a bit crazy the other day and smacked me, so I attempted to pull the supernanny routine and sit her on the ‘naughty step’ for two minutes. She promptly got straight up again, and so I placed her back on the step and informed her that any further attempts to leave said step would result in a loss of pudding. She loves pudding, but even this wasn’t enough to thwart her crazy bright freethinking little brain and sway her into conformity. She proceeded to ask me what exactly we were having for pudding, in order to weigh up whether it was worth staying on the step for. Facepalm. The child also happens to be no respecter of persons; the thinking for herself and apparent rudeness can occur at any given location. She isn’t scared about taking on older children at the park if she thinks something is unfair, and she will definitely speak her mind if asked a question by an adult, regardless of any social constructs and without concern for how her response may make them feel. Her school report stated ‘BP knows her own mind and is very confident in sharing her opinions.’ I know a few teachers and up until July I worked in a classroom, and that little statement basically translates to ‘how the heck do we tell you your kid is a non-conformist nightmare child.’
So it got me thinking; how can the very thing I value so much in child rearing also be my biggest bugbear?! And I think the answer lies in the fact that B happens to be reacting at a level way beyond her years. She responds with the thought processes of a child much older, and with life experience even most adults won’t ever have the pleasure of. You see she’s my fourth child. She comes after my very special boy, a kid who needs around the clock 1:1 attention. She bears the brunt of B’s frustration on a regular basis and has the bruises and scratches to show for it. She watches her brother seize up to 45 times a day. The phrases she most often hears are, ‘BP, just wait… please wait… not right now… I’m in the middle of dealing with B…go ask your sisters…I can’t right now…hang on…two minutes…’ Conversations are regularly cut short in order to rescue B from some predicament or other, her older sisters, while very gracious to a point, understandably get annoyed with her banging on and on at a constant high volume. She wants to be heard and yet so often, through circumstance alone, her voice is drowned out by generic chaos. We try and set aside Mummy-B time, which she laps up, but as soon as regular life kicks in again after that little oasis she defaults to defiant little devil.
So the more I chew on it, the more I realise the impact of having a special needs child radiates out to the whole family, and more than that, has an immense effect on the baby born after him. Emotional exhaustion, physical fatigue, sleep deprivation, adrenaline insanity, system fighting, advocating and the day-to-day chaos of living with four children, one of whom you literally cannot take your eyes off for a second, are all ingredients for a less-than-ideal environment in which to raise a little girl. Sibling Syndrome. My guess is it’ll go one of two ways; either I’ll end up with a compassionate, strong survivor or I’ll end up being a granny at 40! I haven’t got a crystal ball, and of that I’m very glad, because if I knew what was the next curveball in the game of my life I might well just give up now. So I’ll keep trying my best, even when that best seems so far from good enough.
The next time you see a kiddo kicking off (especially if it happens to be mine!) please try and view it through the kaleidoscope of context. And if you don’t know the context, don’t succumb to the judgey constraints of social appropriateness just because. Yes, a child may be displaying definite signs of Spoilt Shit Disorder, but they may also be showing old before their time, freethinking Sibling Syndrome traits.
‘Disobedience is the true foundation of liberty.’ Henry mate, I f***ing hope you’re right.
*Since time of writing I have set up a funding page to try and get out to a conference about my son's rare condition. Please head over and give if you can.