The First and Main thing

I’ve really enjoyed all the feedback and support in response to these blogs – it’s especially rewarding to hear from other parents who have been inspired to have birthday parties for their children (with peers, not just family) – or to start Facebook pages for them to keep in touch with people.

But I’ve also had enough feedback of the “I never know what to say” and ‘I’m terrified of saying the wrong thing” variety to make me reflect I may have done a bit of moaning and finger pointing about words and how they can be so annoying, without really offering any advice as to what the “right” thing to say might be.

That’s because I don’t know.

People who know me know I’m far more likely than most people to blurt out the “wrong” thing because it just occurred to me and I can be a bit impulsive.

But we can only ever judge people on their intentions.

Someone who is charming but vicious is a far more dangerous prospect than someone who drops some clangers with the best will in the world.

Sweetness and light with a motive of glory or revenge ain’t so sweet.

However the vast majority of us are just humans blundering along and trying to do so amiably.

So I despair at the thought that some of the nicest and most sincere people I know – (the sort of people who have made a point of contacting me to tell me they enjoy this blog) are also feeling desperate about potentially saying something “wrong”.

It’s unfair to judge the well intentioned harshly but I don’t think people do;

we parents have far more pressing wrongs to right.

All I can offer is that in my experience, and that of some of my friends – sometimes the worst things are not actually said.

The very worst thing not actually said is when I tell people my daughter is intellectually disabled and I just get the head-on-the-side “ohhhhhhh” which shows me they pity me – and also they are patronizing and my life feels utterly diminished by them.

Those are the people who leave you feeling like crap.

Another thing not actually said sometimes is “hello” to our children. And that can offend.

I have a feisty friend who was parent for five precious years to a beautiful boy and she was enraged by the numbers of visitors, health professionals and “advocates” to her home who didn’t even acknowledge him in the room.

She would actually halt things, invite them to look at him and say “hello” before proceeding.

I think of her, and him, when I notice people ignoring Claudia.

Talking around or over people happens to many of us; the physically disabled, the elderly, the very young as well as the intellectually disabled.

My Mother, bless her, still sometimes asks me if Claudia would like a drink or something to eat. And I hear myself snapping “I don’t know – ASK HER!”

But these are niceties and don’t always work.

Claudia will say “yes” to anything my Mother offers her – and if I give her a choice of two things (peanut butter or jam? jam or vegemite? vegemite or peanut butter?) she will without fail, choose the last thing I said.

Some people try so hard to do the “right” thing – and it backfires.

On one occasion we were in hospital – waiting for assessment – and a young registrar came in, clearly didn’t read the top of his notes, didn’t look at her at all and just said “So Claudia, where is the pain?”

I waited a beat then said “well, I think it’s-”

now now Mother!” he cut me off “ it’s important you let her speak for herself!”

So I duly shut up and sat in slightly smug silence as he very slowly realized she was not only deeply asleep but also intellectually disabled and he coughed and shuffled her notes, read them more carefully, and then with a flaming red face asked me if I could shed any light on her condition.

Not just the presenting one.

Which just goes to show that nothing is simple, “rules” depend and flexibility matters.

But I digress.

I think how to respond is a potential mine-field because of the variety of ways we families feel about it.

For instance, being told someone has been diagnosed with a terminal condition is pretty much bad news and we all respond accordingly.

Being told someone has been diagnosed, after years of questions and pain, with something easy to treat and is finally recovering is generally good news – and that’s how we all respond.

But it’s hard to know which side of the ledger to come down on in response to news there is a diagnoses of intellectual disability.

Some families may be shocked and devastated – some may feel truly blessed and privileged, or maybe all of those things.

There will be a variety of responses because we are people.

We are just human beings who may or may not feel the way you may-

who may or may not appreciate you giving us an emotional response which reflects only how you would respond or how you think we may respond

and is therefore charged with the potential for pity, platitudes, and patronizing problems!

So I guess the best response is going to be one which is emotionally neutral.

In New Zealand there is a group called People First – a self advocacy group which formed out of Idea Services. The self advocacy movement is worldwide and so is the intention of the name.

Round table discussions on how to define themselves led to someone rightly pointing out they were not a bunch of characteristics, not a group of diagnoses – they were first and foremost human beings.

They were – and are People First.

They are not “A Downs” – nor are they “A Cerebral Palsy”, “A Special Needs” any more than they are “A Spastic” “A Retard” or “A Mongol”.

It’s a significant detail and if it matters to People First how they are defined, then it matters. No-one wants to be known as a condition first.

It’s saying “I have a grand-son who has special needs” instead of “I have a special needs grandson”

They are People first. They are people.

If that is your first response that’s probably the right one.

Acknowledge the person, if they are there. They are a person.

If they’re not there, still acknowledge them. Because they’re a person.

I find “how is she doing?” is a benign and friendly way of asking about her and our life without implying how I should feel about it.

I enjoy hearing about other people you know who might be having similar experiences.

I have a cousin who has Down Syndrome – she’s 13 and just loving High School!”

It reminds me that disability is everywhere and its something we have in common.

That and being human.

Because they’re not “ A Downs” – they are a person who has Down Syndrome – who may also have green eyes, numerous certificates for swimming, a wicked sense of humor, every Julie Andrews movie and a growing collection of original poems.

They’re a person. They’re human. With hopes and challenges, needs and aspirations.

Just like the rest of us. We are people. First.

Zero

Zero is the amount of privacy in my life.

Zero privacy within my family – and pretty close to zero as a family to the outside world.

At least it often feels like that.

I have a 16 year old who still feels entitled to enter any room at any time with no warning and no consideration for what might be happening on the other side of the door.

Those awful toddler days of chatting on the loo, being interrupted on the phone and unwelcome bed guests are with me still.

Even her 12 year old brother, in the throes of puberty and its crippling need for privacy has to put up with Claudia sitting on the loo shouting at him while he’s in the shower. Poor boy.

Until we find another house, (with 2 bathrooms) Claudia attempts to enjoy all our most private moments with each of us, at her whim.

As a family we are also exposed to the scrutiny of others.

People with clipboards and checklists coming to to see our spaces, judge our faces, rate our places, manage our “cases”

There are things they are are looking for – mysterious things about which they shed little light.

Do we have a clothes drier? “Umm – yes?” “Mmmmmmm” tick and a little note is scribbled.

Bloody hell – what is the right answer? And why?

What does this have to do with Claudia?

Often I see Claudia being routinely ignored in the assessment processes.

In the early days there was a someone in our house with a clipboard and a list and a job she could see a career path in, and we were just a young family with a disabled child and she asked me – without averting her eyes from the task at hand – “can she dress herself?”

A few moments passed where I wondered if I was actually right there, right then, hearing this- or if I was on some parallel planet– and the silence grew and her eyes lifted not from her clipboard – until I said –

She’s right behind you – propped up against cushions because she can’t yet sit up.

Do you think she can dress herself you unbelievably stupid girl, turn around and see for yourself!”

Except I didn’t actually say that. In real life I just said ‘ Um. No” and hoped that didn’t count against us.

But who would know?

As if other people routinely expecting to know details of life within our four family walls isn’t bad enough, technology, excellent as it is for Claudia, can now conspire with her to expose us even more fully.

As Claudia explained earlier this year on her Facebook Page

Screen Shot 2015-06-18 at 10.47.02 am

That’s right, I was in the unholy position of confirming to Claudia’s teacher that yes, we did know the man taking his clothes off in the pictures, yes it’s her Dad, no we’re not creepy or weird just very very, very embarrassed now.

But who knew photos taken for a laugh on my phone would end up on Claudia’s iPad?

Well, yes now we know!

My sister has referred to her as “I,Claudia” ever since, Steve has still not been brave enough to appear at school and iCloud has since been disabled on her iPad.

Being assessed and judged by others is pretty awful, especially given the fact the scrutiny is usually to determine some level of support.

So with ORRS (school funding levels) applications and many others, we are advised to stress her disabilities in order to be clear about how difficult it all is, which is of course depressing.

Other people surround themselves with positive affirmations on post-it notes on their fridges and monitors ; “You’re Beautiful!” “Make Every Day Count!” “I Deserve to look Good in a Bikini!”

For a long time it seemed as though our daily mantras were a ceaseless round of

Our Life is Hard !– So Very Hard!” “We Cannot Do Things Other Families Do!” “We Are Doomed To A Life Of Struggle!”

So we try to consciously surround ourselves with only positive people, use our finely honed bullshit detectors to release people who are draining and to find optimism where we can.

We try to acknowledge and appreciate the things Claudia contributes to our life .

And these are significant.

We listen to a lot of music ; Neil Diamond, John Denver, Muse, The Wiggles, Radiohead, Nick Cave, bagpipes and brass bands – she loves them all equally loudly.

Nick Caves “Red Right Hand” and the Headless Chickens’ “Gaskrankenstation” get her extremely excited and she stomps around clapping and dancing.

Silent Night”, John Denver’s “Sunshine” and RadioHead’s “No Surprises” make her cry, which is moving and sad. But she insists on sitting through them with tears the sliding down her face.

We have seen every Muppet Movie repeatedly and still get to enjoy Chitty Chitty Bang Bang and The Italian Job (the original)

We can park in the disabled parks.

We have a family vernacular thanks to her ; at night the “mops” come to fly at the lights, we have our friends “Din” and “The Hons”

We have sentences ; “who’s that phone?” “because why?” and a unanimous alarmed “ahhhh!” in her exact F# pitch when something goes wrong.

She even named her brother Jasper ‘Zabba” which has turned out to be pretty passable as far as nick-names go.

These words and phrases created by Claudia are used by us all now – that’s our family lingo.

Some of the people necessarily in our lives have been lured in with money (pitiful as these rates usually are) – employed to be her babysitter, support worker, friend.

They have to be friends with all of us, they have to not be more insane or more needy than we are, be flexible and fun, tolerant and discrete.

These people are hard to find, and we’ve had some of the bonkers ones.

But they have been made up for with the truly life-saving gems who we now count as family and on whom we rely.

So while it’s undeniably annoying our family doesn’t get the levels of privacy others do,

and that we still have someone, now adult sized, appearing at our bedside, throwing back the covers, climbing in with her pointy elbows and demanding a “tickle back” – it’s just our lot – and that’s ok.

Because it’s much worse to think of a time when we won’t be here to hug her in the night or she won’t be with us to demand it.

Which is why it’s worth not closing ranks, not obsessing about our lack of privacy.

Because if some of the people who arrive in her life, stay interested in her life enough to ensure she has the support she needs, then that is peace of mind. And it will all be worth it.

That ONE thing

Irony just when you don’t want it.

Mid week and I was mid blog – a contentious blog, a ranty, confronting, awkward blog.

The sort of blog that sees me potentially unfriended, unfollowed, un “liked”

I was writing about the ONE thing I never want to hear again as a parent of a person with special needs. The ONE thing that I still can’t believe gets regularly said to me, that pisses me off the most and I just don’t ever want to hear again.

And then I get an e mail alerting me to a new comment in response to a previous blog.

And there it is.

Well done and a great read……Fiona ,God only choose special people and families to have these wonderful special ordinary people. I take my hat and hair off to you all, Claudia is so lucky to have such a wonderful family.

Keep up the writing its fantastic.”

Goddam it! God? Really?!

I now had to park this blog because it’s not polite to continue – it might offend the person who said it.

Because it was a compliment (of course) – with the best will in the world (always) and with only kindness and compassion as its motivation (as per usual).  Bugger!

This ruined my day for several hours until Steve’s blunt response

“So you are never going to say the very sort of thing you wanted to be able to say in this blog? “

That’s right. I am going to continue to smile and thank people for words that offend me.

Hypocrite”

Ouch. And I was annoyed – not with her for saying it, but with myself for immediately retreating to that place of sucking it up.

So I e-mailed her, explaining the strange circumstances of her comment and its timing – she was amazing and cleared the way (in my own head) for me to continue. So I will.

Here’s my position.

In the first place god isn’t responsible for “giving” me Claudia.

That person would be Mrs Samarakodi, a surgeon with infinitely skillful and tiny hands. She and her team went straight to work on my tiny premature baby, repairing her blocked duodenum and enabling her to live.

She, other medical specialists and the incredible nurses in the neonatal intensive care unit provided Claudia everything she need to be alive.

The version of Claudia god “sent” was so broken she would not have stayed alive

so to credit him with her life is hugely insulting to all those medical professionals, their years and years of diligent work and effort.

Claudia is alive thanks only to human expertise and intervention

(As an aside in those very early days I overheard my Father sidle up to a senior Dr and say “I hope you’re not giving my daughter a life sentence.”

I thought this was really harsh, but pretended not to have heard.

Over the years I’ve thought about this often and he was absolutely right.

It is a life sentence. And clearly Dad was never under any illusions as to who was providing that life to Claudia.

The closest he ever got to an attempt at spiritual comfort was

Well Honey, in my experience we rarely get dealt something in life we cannot handle”- which has had the dual effect of comforting me and galvanizing me when times have been tough)

And secondly when people tell me we must be special for god to have chosen us for this is – what is actually being said to me is this ;

You Have Got Exactly What You Deserve”

The idea that a god has selected this life for Steve and me and Claudia is just horrible.

Her difficult life which impacts also on her siblings and our wider family was given to us on purpose.

That this life of frustration, pain and struggle is just what he intended.

For US. And for HER

The notion that we have been especially chosen does not endear your god to me.

You might just as usefully tell me

oh you must have been crap in a previous life – this is karma”

or

I guess you have to work your way up through all your life lessons , you ignorant human”

or

cut the head off this rooster, stick pins into this doll and shout “ylangylang!” at the moon while spinning counter-clockwise. That might change something. Or not”

For me, the notion of being chosen by an omnipresent god is not only a nonsense but an offensive nonsense.

This paternalistic god of omnipresence and judgement, tricks and temptation, who demands obedience, reverence and worship while at the same time sending floods or plagues or turning us to salt is not a god of goodness and mercy.

For me, this is not real and nothing to respect, let alone feel special for having been divinely chosen by him.

It’s hard for me to not go off on a big ranty rant here about religion generally.

But I wont because the point here is just that I don’t like being told this thing.

It makes no difference if you are a truly religious person who believes we are blessed (which does happen) or someone who says it as a mere platitude, an acceptable “something to say” in response to our lot – (much more usual)

I know there are some parents who do feel blessed, honored, specially chosen to guide their child’s journey. That thought gives them comfort and peace.

But I’m not one of them.

Steve isn’t one of them.

So please don’t say it. Not to us. Not any more. We none of us deserve it.

12 and a bit

12 and a bit

When people ask what’s “wrong” with Claudia I have a couple of replies – the simple one “it’s a chromosomal thing – what it mans is she’s basically like someone with Down Syndrome – only worse”

That’s quite straight forward and satisfying, especially for younger people.

But if people are older or interested I will – with my appalling lack of scientific insight or ability, launch into my little speech about chromosomes.

You know how we all have 23 pairs of chromosomes, in every cell in our body – 23 perfect pairs – well sometimes they’re not so perfect.

Someone with Down Syndrome for instance, has 3 of number 21. So they have a pair of 1’s a pair of 2’s and so on – but when they got to number 21, they have three! So instead of a pair of 21’s they have a whole extra chromosome. That’s why it’s also called Trisomy 21. Because they have three of 21” They nod.

-”Well Claudia – she has two and a bit of number 12. So in every cell in her body she has pairs of every other chromosome – but her number 12, there’s two plus a bit more added onto one of the 12’s. So it’s a partial trisomy of chromosome 12. Does that make sense? ”

And people look at me with glazed eyes and ask “what’s that then?”

And the answer is, it’s not anything.

There is no syndrome associated with her exact duplication at the exact place where it’s duplicated and the exact same information repeated. It’s not common enough to be a condition or syndrome. She is UNIQUE.

Most of us walking around are the same ; 46xx or 46 xy, 46 chromosomes (23 pairs) plus the xx which makes us female – or the xy which make us male.

Claudia’s karyotype – (chromosome recipe or map – my own non-scientific words) is

46,XX,add(12)(p13.33)de novo ish dup(12)(p13.33p12.3)

Yeah! Bet you feel a bit dull with your 46xx or 46 xy now!

For every chromosome number there’s the potential for extra bits, bits dropped off, bits moved from other bits and jumped on the wrong chromosome and where those bits have jumped off and joined on or disappeared what genes were there and how damaged they are.

When there are common chromosome abnormalities, they can be lumped together with a syndrome or condition name, but the vast majority of anomalies are as unique as the individuals who live with them.

This week is Chromosome Disorder Awareness week.

Unique” is a UK based charity which was, from the very start, the biggest source of support for us as a newly diagnosed family.

http://www.rarechromo.org/html/home.asp

If you visit their page you will see that they have built up a massive collection of members and information about chromosomes and their accompanying disorders. Over the years we have filled in surveys to add to their body of knowledge. If you care to search on their site for the document about 12p duplications you will see Claudia stars quite predominately!

http://www.rarechromo.org/html/DisorderGuides.asp

And if you know her , it’s not hard to guess which snippets of information are her.

Still, she’s a rare beast, chromosome 12 is not common and a map of characteristics and expected outcomes is still being built.

We are very happy to contribute and add to the body of knowledge. Because we know that’s what parents want and need – especially in those early paralyzing days of diagnosis.

One of the worst things that happened for us in that time, was the appalling comments from our (then) pediatrician.

17 years ago, very much less was known about these conditions than is now known, and our pediatrician was totally in the dark himself. But he didn’t want to admit it.

He sat across from us holding some printed pages and said “now, I’ve found some stuff about chromosome 12 on the internet. But it’s tough reading and I’m not going to show you”

Wait – what? ! Yes, he sat there, with “information” in his hands, which he declared he would not share. Pompous Ass.

Some of the information out there is not pretty reading, it’s upsetting and unsettling and depressing and overwhelming – but it is not for anyone to deny parents knowledge.

So Unique, with it’s clear information and straight up dialogue was such a great place for us to find information, comfort and a sense of family.

The monthly magazines included letters from families who were struggling with the same issues we were. The saddest reading was the RIP section at the back. But it was real.

Real knowledge, real support, useful, relevant and motivating. We were so excited to find Unique we rashly volunteered to be “New Zealand reps”

Over the years we have done nothing useful I can think of and thankfully today there are Facebook Pages for Unique centrally and country by country, so whatever we signed up for has probably been usurped by the connections of the world wide web and social media.

But Beverly from Unique did contact me recently, because of our change of address.

She asked for an update about Claudia – expressing surprise it that she is nearly 17.

That conversation (and the daunting potential task of writing an update for the Unique newsletter) was another reason I started this blog. There is too much to say to other parents in one letter. And too much gratitude to Unique and all the work they have been doing for all these years to thank them within their own forum.

So I’d like to thank them publicly and let you know about them – if you don’t already.

Chromosome Disorders are everywhere. Families like ours may have unique members and be members of Unique, but we are all in it together.


Please be aware this week

4 Parties & Facebook

Lots of my friends groan at the thought of their children’s birthday parties;

the relentless competition for the best theme , most outlandish games (often based on reality TV shows and requiring about as much pre-production), food which caters for everyone’s tricky diets – wheat/gluten/ lactose/sugar/nut free) and the trauma of the goodie bags- $2 shop pre-assembled tat or home-made carefully compiled expensive trinkets?

Or just a piece of cake to take home? But wait! The cake may contain traces of nuts and almost certainly has a great big dollop of A4 E129!

I can understand why it can be all too hard.

But we grew to love Claudia’s birthdays and went to some effort for them.

When she was 7 and that first really big gap between her peers and her started yawning so blatantly, we realized that unless we engineered some social interaction for her she’d be likely to drift away into a comfortable but isolated twosome with her Teacher Aid at playtimes and lunchtimes.

But asking one or two friends over to play with someone who wouldn’t really engage with them in a socially satisfying way, for an ordinary 7 year old would be really really contrived – and a bit cruel.

So we thought – “Bugger it, lets ask everyone once!”

And so once a year for her birthday, Claudia had party to which every girl in her class, her Teachers, Therapists, Teacher Aids, some family friends, their children and our own family were invited.

Luckily we had a big indestructible house in the country and could be as loud as we wanted to. Because Claudia loves noise and activity and dancing and watching other people even if she doesn’t always want to join in.

It began with her 8th birthday – a team of little girls poured into the house and we were a bit shocked at how screamy and excited they were en masse – how quickly they churned though the usual party games and how restless for adventure they were. They were dispatched upstairs to the dress up box and to be “made up” by Claudia’s older sister and her friends while we quickly devised a more complicated and time consuming game.

By the time we’d had a fashion parade down the stairs we were ready with enough dares in balloons for everyone there. There was popping and more screaming as every girl lived vicariously with the next through their dares – (I learnt only recently that one girl was absolutely terrified sitting in the dark cupboard with our smelly panting dog for a whole minute- she’s never forgotten it!)

We really didn’t know 8 year old girls very well because our 8 year old wasn’t typical.

For her 9th birthday we had a Gypsy theme , with a fortune reading gypsy, a drummer, a bonfire, some wine for the adults and a high old time. Claudia absolutely loved it and so did her friends.

Her 10th birthday was in the middle of a horrible year of surgeries, a full hip spika (plaster waist to both ankles) hoists, wheelchairs and being in hospital or housebound for most of the time.

But we had a party anyway – with a “Rock Star” theme.

She’d just had the paster off and was coming to terms with her feeble, unresponsive legs. She was in a wheelchair and had been very knocked about but we borrowed a friend’s SingStar and despite some adults being shocked at the sophisticated musical tastes of the 10 years olds present, everyone had a great time.

For her 11th birthday, her final at Primary School with this great gang of girls, we had a “Concert for Claudia” and everyone provided an act.

This was right up her alley and apart from a terrified scream when the lights went out and the show began, she loved it all and sat there like Queen C having her own private Royal Variety show. The staff that year went all out and came in full Rocky Horror regalia for their performance. It was FAB.

We knew it would be the last – that once we all hit High School things wouldn’t be the same.

One of the problems that came with the High School physical separation of Claudia from the others was that they didn’t really know what she was doing, so the incidental chit-chat they would once have exchanged with her dried up altogether. Their paths ceased to cross and if they did they had nothing to say.

As the years went by Claudia really lost touch with those girls and what was going on. That other “7 year” age of 14 when most people begin their own individual social lives, heralded some lonely times where Claudia had absolutely no social life at all.

Then Facebook came along and as I began to be ‘friends” with people Claudia’s age I realized the potential value of “social” media. I got her a Facebook account.

Claudia quickly got loads of friend requests from those original friends – and others.

When she updated her statuses people had something to say to her when they saw her around the school. The could comment to her in real life about what they knew she was up to.

And that’s been great.

She loves her Facebook page and checking out the comments from people she knows. She loves seeing their pictures and remembers them all.

When we run into her friends in real life, we can short cut the small talk and refer to what we know has been going on recently.

It’s a relief for everyone because I know people struggle to hold a conversation with her – she’s not great at conversation beyond “hi” and “bye” – the bits in the middle that others can now put in make her happy because she, her life, activities and interests are being acknowledged.

Facebook is great for Claudia. It keeps her in people’s radar and that’s all we really want. That she’s not forgotten by the people she remembers still so fondly as her friends.

When she left Primary School I made a film of thanks from Claudia to those friends which you can see here

https://www.youtube.com/watch?v=DZ3yVhR6MPw

and if you want to be her friend she’s here

https://www.facebook.com/claudia.sutcliffe.7?fref=ts