Tuesday, 6 January 2015

Falling Out of Faith

A good friend recently suggested I write about where I’m at on my current journey with church, and more importantly, my current journey with God. As a forewarning I’d like to make it clear that this piece is in no way meant as an underhand dig at Christians, or a vent for my less than pleasant feelings towards church and some of the people in it. I don’t have any issue if you choose to take up the Christian faith (or any other faith for that matter); your particular life choices have no bearing on me and are entirely yours to make. So before you get your knickers in a twist reading my potentially ‘offensive’ opinions, hear me out. This is my personal take on life from where I happen to find myself right now. Brutal? Perhaps. Honest? Always.

Most of you who know me will know that up until recently, a huge part of my identity was my burning passion for Jesus. I wholeheartedly believed in the fundamental gospel, that I was inherently in need of saving, and that God had provided a convenient route via Jesus’ death and rising. Furthermore, I felt the need to share this truth with all I came across, to ensure they didn’t befall a fiery eternal death, and to ‘win’ people for the ‘kingdom.’

Even writing those words is difficult now. I cringe when I think of all the jargon and judgment I poured out on so many who were unlucky enough to cross my path. If that was you, I’m truly sorry. My arrogance was born out of a genuine concern for people, based on the ‘truth’ I built my life on, but looking back, I was a total numpty. It’s not all bad though. I made some incredible friends on my Christian journey. Perhaps it was the social glue of a common belief system, or the minimal group paradigm; whatever it was, some of those friends remain friends for life in the truest sense of the word. I also geared my life to helping others, by no means a bad thing.

The falling out of faith came slowly, then all at once. A bit like falling asleep, except this felt like waking up. The more I stepped away, the more clarity I had. It started with irritation at people offering to pray for us when B wasn’t sleeping. And by not sleeping, I mean not sleeping. At all. Ever. People prayed and nothing changed; and when they asked and I honestly told them nothing had changed, they would step up with some bullshit about God’s plan being bigger than we can understand. There was literally no good to be had from B not sleeping, so why couldn’t an all-powerful, all-loving, all-knowing God just do something about it? Oh yes. There must be a bigger plan. One that God in his infinite wisdom had chosen to withhold from little old human me.

 This dissonance between what I was taught about God and what I actually experienced in my everyday began to grow. People would share about how God gave them a parking space, or how they suddenly had money during a period of financial difficulty, or how God had answered their prayer about the lady down the road accepting their invitation to a church event. All the while I was delving deeper and deeper into a world totally beyond my control. A child whose needs continued to become increasingly complex; who didn’t sleep, who had multiple medical issues, who became a danger to himself and others around him and whose future was entirely unknown. So God answered prayers about parking spaces but remained silent on things that actually mattered. Bigger picture stuff apparently. It didn’t sit right with me.

Being completely honest, working for the church has had its downsides and did nothing to reconcile the struggles I had. At best, the tactics used to ‘win people’ are misguided, at worst, manipulative. I’m talking as someone who has seen and experienced the inner workings of church. Granted, not all churches operate in the same way, but when the secular world offers better support to it’s employees than the Christian sector, something is out of whack. I have painfully watched my husband suffer completely unnecessarily as a direct result of decisions made by the very people meant to be supporting him, supporting us. The reason? The relentless pursuit of agenda and programme; the chase of masses over the minority.

At this point I chatted to some trusted friends about how I felt. Some were helpful, some repeated the bigger plan mantra like a broken record. Probably the best advice we had was not to throw the baby out with the bathwater, not to make big decisions about faith off the back of emotional hardship. Good advice. I went away and started to research the whole thing. Origins of Christianity, church history, anthropology in general. In truth, I was desperate to find some tiny thread of conviction to keep me in the faith. Letting go of something that has been your way of life for so long is not easy. It’s unsettling, and difficult, and shifts your entire outlook in so many areas. Equally, remaining part of something I could no longer truthfully conform to is not who I am. I’m hardwired personality-wise to be true to myself and true to others; naturally non-conformist, you might say.

Despite my desperation to find the anchor I needed in my adrift state, the more I read, and the more I observed, the less convinced I was. The horrific genocide in the Bible, justified by an all-loving God. The gruesome wars that continue to the present day based on faith. The controlling manner of an institution that expects people to conform to what it thinks or run the risk of being sidelined for expressing a different opinion. The disrespect and arrogance of pushing ‘truth’ on a world capable of making it’s own decisions. A creator God, who created us knowing we were inherently flawed and then punished us for it anyway. An overarching idea that we’re screwed from the start; worthless and destined for death without the intervention of the God who created us that way in the first place. A God who supposedly wants a friendship with his people, but remains intangible and mysterious when things go to shit, who could change things but chooses not to. The Bible, really? A collection of writings picked out by a committee back in AD 363, which Christians can’t even agree on.

The deal breaker though, came in repeatedly watching church services and meetings where the atmosphere and ambience is cleverly orchestrated by the set-up (music, persuasive language etc.) to facilitate an ‘experience with God.’ A kind of high, if you like. The same emotional feeling one might undergo at a particularly touching concert, or when reading a good book. Except when this happens, and is encouraged, in a Christian setting the person involved is informed that God is at work in them, and the emotionality of the situation is exploited to full gain of the church. I have unwittingly been part of that very set-up, setting the lighting just right, and putting on emotional music in the background to invoke an environment where essentially people are made vulnerable and their responses can be attributed to God being at work. This emotional component is a common thread throughout all faiths, meditation etc. and seems to fulfil a human need. That’s great. My issue comes when this is attributed solely to the God of Christianity, with all other parallel experiences being written off by the church as human or demonic based activity, in and of itself wrong and unhelpful.

I look back at what S and I did as youth pastors and for the most part feel a sense of pride at giving the young people fun experiences. We were pretty good at what we did! ;) Then I remember the teaching times and, as much as we always communicated to the kids to go away and weigh things up for themselves, we also told them what we believed to be God’s truth. Essentially, given their vulnerability as adolescents and their trust of us, we told them what to think. I hate that I did that. Looking at my own kids, I want to give them as broad an experience as possible. I want to teach them to be decent human beings, but aside from that they should be free to believe whatever they determine is the right path for them. To bring them up in the constraints of the Christian faith, with a fairly narrow mind-set, is unhelpful and confusing. I know of too many young people who have major issues because their thought processes conflict the teachings they have been brought up with. They go through their teen years, which are difficult enough, with a heavy burden of guilt and shame about what God, their parents and the church may think of them. I don’t want that for my kids.

Equally, I see all the awesome things the church does for society. Toddler groups, parenting courses, marriage courses; all brilliant community builders. My sticking point is the claim of the church that these things are building God’s kingdom. In their opinion that’s what is happening, but to someone no longer subscribed to Christian theology these things are just awesome community events. I guess my main issue is the Christian arrogance that their way is THE way. I cringe saying that, remembering the many times on an evangelistic rant telling people outright that God’s way was right and their way wasn’t. ARGH! Sorry people! How absolutely disrespectful. Prefaced with ‘I believe..’ or ‘My opinion on this is..’ I have no issue, but when ideas are communicated as fact we run into problems.

In conclusion, where I’m at is this. I can’t believe in the God of Christianity anymore because ultimately, it makes no sense to me. Trying to resolve the dissonance between what I have been taught and what I have experienced of God takes too much energy and emotional expenditure. Energy and effort I just don’t have to spare.

Am I the same person? Absolutely. I still maintain a positively altruistic take on life and make my decisions accordingly. I am still capable of doing good stuff without needing to put it down to God working through me. Equally I am still able to mess up and recognise the need to take full accountability for it. I no longer feel at odds with myself, a frequent feeling in my previous Christian journey. If I want things to change in my life, I am responsible for changing them with action, not a wing and a prayer. I’ve honestly never felt more empowered and liberated. Please don’t pity me, or pray for me, or make judgments on my angry and embittered soul. Not that I should even need to say this, but I’m not angry, or bitter, and I’m not temporarily absconding. I’ve not had a glitch in my faith due to circumstance. Right now, this is where I’m at.. And it’s an amazing place to be.

I don’t know what’s out there, but I do know this. I will continue to work towards making the world a better place to be through my actions and choices. I will keep loving, keep hoping, and keep on keeping on regardless of what life throws my way.  But personally for me no god is part of that picture. I’ve got it covered myself.

Peace, love and light friends, whatever your belief may be.

Friday, 12 December 2014

‘Twas the Night Before Christmas

 ‘Twas the night before Christmas, and throughout the UK,
Excitement was building- for Santa and sleigh!
We’d like to portray a warm cosy scene,
But the truth is unfortunately not that serene..

The past month at school has been crazy and busy
Nativities, shows, parties; it makes my head dizzy!
The kids are all tired and grumpy and such,
She punched me! He scratched me! It’s getting too much.

At last they were nestled all snug in their beds,
While visions of snow angels danced through their heads.
The hubby and I had a cheeky nightcap,
And settled our brains for a (brief) winter’s nap.

Awoken next morning-4:30, oh dear-
I’d been informed Santa had already appeared?
Mixed feelings arose as I rubbed my tired eyes
Festive fun? Happy families? Lies, lies, more lies!

Now for those of you ‘typicals’ this is gonna sound mad,
But here Christmas is like any other day to be had.
The seizures don’t stop, nor do B’s complex needs,
But the pressure to have one perfect day is extreme.

The girls want the warm, magic, glittery glow.
But Christmas is hard to pull off don’t you know?
New faces, new food and a present or ten
Means the house gets pretty scary and unpredictable, then:

Our boy who’s non-verbal, who can’t say a word,
Gets grumpy and cross trying to make himself heard.
The crosser he gets the more seizures we see
And the less he can cope with the Christmassy glee.

We try very hard but it’s most fair to say-
Autism and Christmas-not a fun mix, no way!
If we head out he can’t keep his temperature stable,
If we’re in? Hanging scarily upside down from the table.

Routine out the window, B’s all of a flutter,
Tears and frustration-the house is too cluttered.
The colourful presents he pushes away
What the heck’s with the oddly wrapped box anyway?

To those folk who love Christmas, it’s hard to relate.
In honesty each day we’ve enough on our plate!
With therapy and meds, nappies, PECS and the like,
Not to mention the sleep we don’t get every night.

With every intention to make good memories and cheer
We’ll keep on keeping on, year after year.
But life for us hangs in a balance you see
Not much room for manoeuvre or spontaneous glee.

So a plea from the parents of special kids UK wide,
Please don’t judge us-we truthfully really have tried
To put on a smile and make Christmas fun
But honestly and frankly just let it be done!

Sunday, 16 November 2014

Wake Me Up When It's All Over

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

Genetics 101

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.