I am Rebekah Corlett... @iamrebekahcorlett - Tumblr Blog

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Last year I was made to leave an after hours surgery with a sick and screaming Sophia by an unsympathetic doctor who didn’t appreciate us bringing autism into his workday. Almost a year to the day, I was back in the same chair, with a sick and screaming Sophia.

I didn’t want to be there. I had sworn black and blue a year ago that I would never return. Any establishment that was illprepared and unwilling to help a family with a special needs child in need, doesn’t deserve our custom. We had since changed GP’s and on the only occasion when we needed to visit a doctor outside business hours (this past christmas) by luck this place was closed and we had to go to the next closest surgery 45 minutes drive away.

We were there yesterday after Sophia’s little foot grew swollen and red from an insect bite (we think it was a spider). It’s a long weekend here in NZ so I couldn’t wait until tuesday for a doctors appointment, so begrudgingly we had to take her to this godforsaken place.

The feelings of hurt and upset were still surprisingly fresh in my mind. I remember the doctor’s disgusted face as he looked around the curtain to see who was making all the noise. I remember his words ‘You can’t be here. Her GP is more equipped to deal with this.’ Whatever ‘This’ is. - 'This’ sick child who was in hospital less than a week ago after a seizure? - 'This’ inconsolable, confused child who doesn’t know what’s going on? - 'This’ fatigued family who is asking for help, who you won’t even take a minute to check her temperature? (if he had bothered he would have found an ear infection)

It’s like I never really left. I’m haunted by that experience. It’s spectre follows me wherever I go, tainting my perspective and expectations of the rest of the world when they meet my child for the first time. It hurt. It still hurts.

The kids were playing happily. Nice and loud, and happy. Normally I would 'shush’ them, but I noticed a sign on the wall saying 'please ensure your children are playing QUIETLY. There are patients in the waiting area who are unwell.’ I’m not telling them to shush, the stone-faced receptionist and other patients waiting can go jump for all I care! I notice another sign telling parents to make sure their children don’t climb on top of the wendy house. I don’t bother to tell the kids not to when they decide the view of the waiting room is better from the roof! …Right now I honestly couldn’t care less about their rules and regulations.

Maybe the receptionist takes this into account as two newer patients get seen by the nurse before us. Perhaps we are on a black list! Perhaps our file has a note to say that the last time we visited I stormed out without paying… Or perhaps I am over-analysing and a bit on edge at the moment. Quite possibly in fact.

We finally get our name called by a nice nurse I see walking her dog past our house often. I feel relieved that we have someone friendly to show us into the cubicle.

‘Wouldn’t it be hilarious if we got that same doctor,’ I muttered to my husband as we walked down a corridor.

...And then I saw him.

That same doctor, with that same unimpressed look on his face.

‘Keep cool,’ my husband whispered.

‘You’re doing the talking then,’ I told him.

My hands were trembling, my knees were like jelly. I was not only reliving the moment he made us feel like something he scraped off his shoe, but also all the times I had fantasized about all the awesomely smart and quick witted things I coulda-woulda-shoulda said to him the last time, instead of running out in tears.

What halts me from doing this is the intense fear that he is going to treat us the same way again.

Sophia started squealing, and I am petrified he is going to send us away again. I don’t think my heart could take it again. Every time the world is cruel and unfair to my little girl, it affects me. I keep all these experiences deep inside me. At first they just hurt and upset me, but with time and experience I use them as fuel to keep me strong, moving forward and being the parent I want to be.

‘She’s full on isn’t she?’ the doctor comments I say nothing. ‘So I hear from the nurse she’s had a bite on her foot…’ Again, nothing. I look at my husband. Thankfully he sees I’m in no mood for talking and takes the reins. ‘Insect bite, yesterday, blown up today. Limping now.’ (Obviously my husband isn’t really in the mood for niceties either!) ‘Here’s a prescription, take 5mls twice a day. How does that sound’ I’m already at the door, ready to go. I have nothing to say. Not a thing.

We got home, and my husband said ‘Well done, you were very brave.’ He wasn’t talking to Sophia, he was talking to me! It meant a lot for him to say that to me. I didn’t really think about it until now, but it was brave.

I went back, I faced my fear, I looked the cause of all my sadness and anxiety from the last year in the eye and I didn’t lose it. I was calm, and in my silence I said loud and clear ‘you are nothing to me. you have no power over me any more. I am free.’

All the things I coulda-woulda-shoulda said don’t matter any more. He’s just a doctor with no compassion. That’s his baggage now, not mine. The same way he shut the door in our face a year ago this week, I am slamming the door in his face as of now. Closure. Of both the metaphorical and literal kind.

Just like Sophia’s foot, all things heal with time, care and the right medicine.

…So you are scrolling through your facebook feed, flicking past the cat videos, candy crush notifications, baby/food/selfie pics and you see your friend has tagged you on an online article titled ‘Miraculous Recovery: My non-verbal autistic child started talking!!’

Gag.

Your friend has put a little comment above the link - ‘thought this might interest you.’

‘Friend,’ you couldn’t be more f**king wrong!!

You find yourself glaring at the picture of the happy, smiling child in the photo, who is now apparently more of a functioning human now they can string a sentence together. You can feel your fists clenching, and your temples pulsing. You re-read the headline. ‘Miracle recovery’ sounds like the kid was at deaths door, lying in a hospital bed in a coma, not a happy and healthy child who also happens to have autism.

You see RED. If you were a cartoon character your eyes would be bulging outside of your head, flames would bellow out of your mouth when you went to scream, and plumes of smoke would stream out of your ears!

Then you feel sad, followed by misunderstood. Of all the friends and family who have shown their support for your family since your child’s diagnosis, you actually thought this friend ‘got it.’ They never judged when you had to make some tough decisions, or inflated your ego just for the heck of it. They stood by your side when all your other friends ran for the hills at the first sign of a meltdown in a public place, and stayed there for as long as it took to make sure your child, and you were OK. One action, one stupid sodding facebook post and you are left to question the very foundations of that friendship. Your hurt and anger towards them right now is such that you are convinced your friend doesn’t understand you at all. If they did, they would never have sent such an article to you.

While you happily celebrate other families successes, you know that for every one miracle story, there are many other untold stories of children who will never reach this level of development.

There is no room for peaceful reflection in your current state of mind. Just jagged barbs of hostility. Under all the expletive ridden rants, the question remains… WHY would they do that? After all, your friend knows all of your child’s individual traits, she knows that you are an advocate for acceptance and awareness, and have little time for supposed cures.

You think about how proud your friend was of your accepting attitude, and the solidarity they showed. Yet here we are. Feeling confused and isolated like never before. You think of a million short, snippy comments you could make to put them in their place to see how wrong they were. How could they.

STOP!

What you do next could completely change the equilibrium. You want to lash out, yet you don’t want to scare them away. You need them. They are your friend, and your link to the the world outside your autism bubble you place yourself in.

Let’s be honest, we are hard work. Think back to all the times you have turned down their invites to catch up over a wine or coffee because you have a doctors appointment/IEP/meltdown to deal with. When you eventually do catch up, sometimes all you find yourself talking about is how mad our lives are, and how we need a break sometimes. We can all admit to being a bit self-absorbed sometimes. We can also own up to feeling pangs of envy/resentment at their care-free lives, using social media to live vicariously through their exciting social lives when we are stuck at home and up to the eyeballs in PECs cards and support application forms. We aren't perfect, we make mistakes too.

In most cases their action would have been coming from a loving place. They probably thought they were being helpful, and didn’t realise the tsunami of emotions they were unleashing by their actions. After all, newspapers don’t run stories titled ‘Seven year old with autism continues to underperform educationally, parents aren’t fussed as long as the child is happy.’ If they did, your friend would most probably share that story to your facebook page as well.

The closer the friendship, the more heightened your friends awareness of your emotional tripwires. Our parenting journey is such that one day is seldom similar to the next, and your anxiety levels reflect this. Your friend has to determine whether to stomp or tiptoe around you on any given day.

Sometimes our friends and family feel just as lost and confused about autism as we do, and think that ‘something is better than nothing’ when it comes to giving advice.

Give them a chance. If this is the first and only time they have sent you this sort of unsolicited parenting advice, let it go. Tell them how it made you feel, gleefully accept their apology and move on. The best friendships are built on honesty and open communication after all.

However, if they are a repeat offender, and you question their motives for doing so… UNLEASH HELL! There’s no need for euphemisms or niceties, just get it done and feel better. Use the same level of kindness as they did when they posted that stupid article on your facebook feed.

Alternatively, just type in the comments field ‘LOL’ (Log Off, Loser!) and go back to the cat videos and be happy.

It really gets on my nerves when people complain about their ‘lot’ on social media time time again, and then never do anything to help their situation. Whether it is out of frustration or for attention, it annoys me. I’m more of a ‘proactive complainer’ - if something is worth complaining about out loud, then its worth taking the next step to try and address (and hopefully solve) the problem.

For example last year, I commented that I felt out of the loop concerning Sophias schooling… so I joined the board of trustees. I complained that I felt ‘chained’ to the house and my role as a mum… so I put myself out there and attended workshops and volunteered my time for causes away from home (aka got a life!)

Also, and most importantly, I recently identified in myself that I wasn’t handling my stress as well as I wished, and was becoming a ‘shouty mummy' - A most undesirable quality as a parent! So I bravely mentioned it to my GP to see what she could suggest.

A couple of weeks later I attended a counselling session. The counsellor allowed me to describe me, my family and the different forces that work towards my raised stress levels that cause me to raise my voice on occasion.

She asked me why I yell. It wasn’t a distance thing. The kids were right next to me at the time. I thought back to the last time I yelled. Ryan had just bit Sophia, leaving a perfectly round shaped purple bruise on her chubby little thigh. I put him in his room for time out. While I tried to comfort a sobbing Sophia, Ryan had managed to poo his pants, stomp on the contents like he was Peppa Pig in a muddy puddle and run through the house leaving a shitty, stinking trail in his wake.

‘NOOOOO! STOOOOOP!!’ I yelled as he was about to plant a pooey footprint on the brand new carpet in the lounge. As I struggled to clean up the mess, the kids embarked on a new argument, a new conflict to resolve while the house was in shambles around me. I’m not a particularly particular cleaner, but I at least like to have one clean room to keep things in balance. It was a bad day, and my work level, and stress levels seemed to be snowballing. The common formula for my day seems to be 2 kids + messy house + kids social and sensory extra daily requirements = 100 percent of my time and patience divided over 24 hours. Stress is the square root of my yelling habit.

‘THATS ENOOOOOUGH! GIVE ME A BREAK!’ I yelled.

And that was it. I yelled out of sheer frustration, chronic stress and my acute need for respite. I wasn’t angry at them, or life in general… I was happy to tend to my families needs, it makes me happy and fulfilled to know I am providing for their individual needs. But when it is in constant demand, and it seems like nothing I do is enough, I grow weary. My stress rises and the way I express this is with my voice.

Urgh.

That realisation is ground shaking for me. Oprah would call it an ‘a-ha moment.’ Mine is more of a ‘d’oh’ moment. When you don’t have the time or mental capacity to see what’s right in front of you, it’s a bit embarrassing when you actually work it out on your own.

She asked more questions, I just talked… and when I ran out of words, I waited for her conclusion. She asked me if I had ever had suicidal thoughts and if I thought I was depressed, to which I replied no, and that I always knew this stress is temporary and that things would be more manageable in the future. Truth. She commended me on my positive outlook, and how it was great that I used writing as an outlet for expression.

‘Well, I just have to say I really admire you. You are doing an excellent job and well… I don’t know how you do it.’

She finished by saying I could ring her for an appointment if I ever needed to chat again, and she wished me luck.

…what, no inspirational pep-talk? No forward planning for ways to curb my yelling in the future? No talk of cures or potions? Not being funny, doc but I could have got that level of advice from a meme on facebook!

So that was it. I left feeling lighter for being able to be 100% honest with someone about my ills, I still felt unfulfilled. I ultimately wanted her to fix me, which, on retrospect was a very unrealistic expectation. Maybe there was nothing particularly helpful she could say. Its not a one-pill-to-cure-all-stress sort of situation after all.

So the counsellor was done with me and I’m done with that counsellor, but not counselling as a whole. It just wasn’t the right fit. I’ll keep being proactive and looking for the right person who ‘gets it’ on a different level who is a bit more proactive withtheir suggestions.

In the mean time I have decided to self-prescribe myself - ten deep breaths a day, as required. I’ve been sending my brain to time out and it seems to be working well!

Sincerely, Still stressed but not shouty mummy x

If you are a child of the 70s or 80s like me (the latter, thank you) it’s been hard not to get caught up in all the Bowie-related nostalgia since his death a week or so ago.

Don’t worry, this isn’t another ‘ode to Bowie’ blog by any stretch. There have been plenty that are better written and researched than I could ever attempt to produce. Instead, I want to talk a bit about one of my all-time favourite movies ‘Labyrinth.’ Released in 1986, it featured David Bowie as Jareth, the Goblin King, in a feathery mullet wig and slightly obscene grey tights, which caused me and my tween-aged girl friends to erupt into fits of giggles!

I remember watching this movie and wanting so badly to be like the central character Sarah - a pretty, delicate framed, shiny haired girl whose opening scene in the movie shows her reciting a play in a park in a flowing white dress…. a long stretch for a pudgy, fuzzy haired maori kid from Naenae!

Just this last weekend I decided to re-watch Labyrinth and see if I loved it as much as I did as a kid. I reached the end of the closing credits with a smile on my face, a tear in my eye (it must have been the Stardust) and oddly, an epiphany that I’d love to share with you all. So without further delay, here is my list of reasons ‘WHY LIFE IS A BIT LIKE THE 80’S MOVIE LABYRINTH’…

1.Things aren’t always what they seem This theme is quite consistent through the movie. In a land where door knockers can talk, rocks can roll on their own, and fairies can bite, the Labyrinth is all about perception. What looks like a solid wall might actually be a portal to an exciting new world. Be brave, and…

2.Ask the right questions If someone tells you NO, ask WHY? That way, you will know what you need to do to get a YES next time. I’m thinking of that little cockney speaking worm who told Sarah not to go one way in the labyrinth. If she had asked why, it would have explained that it would take her directly to the castle… Exactly where she wanted to end up! NO is not always a bad thing :)

3.Play nice In my experience, it’s always advisable to be kind. Especially when you are dealing with people who can help you along on your journey! Please and Thank You go an awfully long way for someone who is used to hearing ‘do this now!’ Even grumpy little trolls will help you out of a tight spot if you ask nicely

4.Lend a hand If you see a giant ginger beastie strung upside down from a tree being attacked by armoured midgets wielding sharp-toothed vermin on sticks, (as you do) help it down. You never know when that ginger beastie might call on his rock shaped friends to help you out of a similarly tight squeeze. But seriously, nobody likes being bullied. Be a friend.

5.Never expect the road ahead to be straight and without incident Sometimes we dance through life like Sarah in her big puffy white dress in that very 80s dream sequence in the movie… Other days it feels like we are stuck in the bog of eternal stench. Thats just how it is. Life is full of bumps in the road, sharp corners, U-turns and potholes… and that’s ok. It might take you a bit longer and be a bit of a pain at times, but it all makes for a far more memorable and interesting journey than a straight road.

6.Life is too short to ignore the pink elephant in the room. I don’t know about you, but the older I get, the less I care about insulting people when I comment on the things that everyone else in the room is biting their tongue about! Life is too short to be left with questions unanswered. Oi Goblin King! Have you got the feels for Sarah or what? The make up and mullet don’t hide the fact that he’s old enough to be her father! Just saying…

7.It’s OK to escape reality for a while Two kids and a household to run don’t make it easy to go LARPing in a park like Sarah in the opening scene, but that was her time away from her family. We all need something just for us that allows us to escape reality for a few hours, right? In saying this, I wouldn’t recommend wishing for the goblin king to take your child to his house for eternity though. I’m pretty sure thats a kidnapping type crime punishable by more than a stint in the bog of eternal stench!

8.Face your demons Just like Sarah, go straight to the source of the problem, look them right in the eye and say YOU HAVE NO POWER OVER ME. Set yourself free and you will be dancing to some 80s tunes in your bedroom in no time. I’m not sure if this will work with my dependence on double coated timtams but I will let you know.

9.Keep going! The road you are on might feel never ending, but don’t stop moving forward. Keep you eye on the prize, go for gold and other relevant motivational catchphrases…

10.Make peace with ‘your lot’ Family related annoyances are, well annoying, but not the end of the world. Sometimes it takes a trip to an unfamiliar land to realise how good you had it all along.

11. Watch more 80s movies. Despite the threat of odd nostalgic epiphanies, they are a lot more fun than some of the movies today. The extended running sequences set to saxophone influenced pop soundtracks are worth it alone. The end :)

I was scrolling through my Twitter feed and spotted several members of the disability community posting their ‘wrist selfies’, showing off their awesome #InclusionMatters awareness bracelets that were distributed in honour of International Day of Disabled Persons. ‘Cool, where can I get one of those?’ I tweeted Green MP Mojo Mathers (one of the wrist selfie snappers). After all, I love me a bit of awareness jewellery! I have loads of ribbons, pins, bracelets, earrings and charms for a variety of causes close to my heart. She replied that they were a limited edition, and had run out - but I could put myself on an email list to possibly get one in a year's time. Excluded. From an initiative promoting inclusion no less! Is this an exclusive-inclusive community I had stumbled upon? Or was this actually a clever marketing ploy so that non-disabled individuals (like myself) could gain a sense of what it’s like for actually disabled people on a daily basis? Either way, it worked. I’m feeling like one of Dr Seuss’ Sneetches looking longingly at all my star-bellied friends. It made me think about my collection of awareness jewellery. In the grand scheme of things, do they really matter? Do they make you any more of an advocate for a cause if you are sporting the appropriate coloured ribbon on your jacket? We all like to feel a part of a group - be it a cause, a community or a family - and wearing a trinket that symbolises your part in this group is a great way to show support for your co-members, and the movement as a whole. A multi-coloured puzzle piece is the globally recognised symbol for autism, and to be 100% honest with you all, this is one trinket I refuse to wear. I bloody hate it! In fact, I would rather wear a pendant of a bedazzled baboon's bum than that puzzle piece! The rainbow colours represent the wide-ranging autism spectrum, the puzzle itself is a symbol for the ‘puzzling’ nature of the neurological condition, as well as all the pieces that fit together to make a whole person. To me, I see ‘a missing piece,’ an incomplete puzzle, not a whole at all. That doesn't represent my child or her autism, no way! That’s why I prefer not to wear anything with this symbol on it. Here’s a link to my BLOG as to why I prefer the small and mighty hummingbird instead. If anyone asks me why I have made that decision, I happily tell them, which in my own way promotes awareness - which is the goal of this type of jewellery, after all. In the end, I have realised that being included isn’t about wearing the appropriate ribbon or applying the new trending hashtag. It’s about equally walking the walk and talking the talk. It’s about wearing you heart on your sleeve, not paying top dollar for a limited edition charm to hang off your 18KT gold bracelet. That’s because inclusion is actually about being accepted into a group without having to prove your worthiness. It’s about being free to be your unique self and have the same chances as anybody else.

New Years resolutions… What’s the point? If I can’t make a plan and stick to it on any of the other 364 days of the year, what makes the 1st of January any different?

OK I just typed that and realised how very pessimistic that must’ve sounded. Sorry - but I am the supreme queen of making and breaking new years resolutions. Year after year after year I make the same claims of eating less, exercising more, being braver and doing more cool stuff. Year after year after year I am stuffing my face with tim tams watching MTV marathons while living vicariously through the social lives of my cool friends via facebook and instagram… all before the first week of the new year is up!

So this year I am going to try something different. Instead of making fantastic imaginary plans on what I want to have achieved by this time next year, I’m going to celebrate what I have ACTUALLY achieved in 2015.

After years of people telling me to (and me rolling my eyes and saying ‘yes, yes I really should) I started this blog. It took a horribly uncaring local doctor treating my child like shit and me penning a rather scathing complaint letter to do the trick. I read it back and was shocked at the venomous, hateful superlatives coming out of me. I took a moment to take it all in, then hit the ‘backspace’ button. I was effectively deleting the hate and anger from my memory, instead choosing a more thoughtful approach. ‘Now write how you actually feel,’ I gently nudged myself. And my first blog post ‘yesterday hurt my heart’ was created.

At first it was like picking a big pimple, like those disgusting clips on youtube of spots left for years to grow and fester and popped on camera causing tsunami strength waves of nausea around the globe, The sudden eruption of rancid gunk/pent up emotion to me was a painful but wonderful relief. As with pimples, the more you squeeze and pick, the better it feels. Eventually the flow stems and the pain goes away and you feel better.

Pimple analogies aside, over the last 10 months my writing has improved a lot. I have branched out to cover topics I never imagined I would ever have/need a voice for. ‘I am Rebekah Corlett’ started out as a way to explain to friends and family what life was like for us, but has transformed over time to become a way to share puzzling/annoying/funny/awkward/heart-warming anecdotes from my life. With a healthy dose of objectivity as well (I hope).

Recently I have started taking my first tentative steps into the topics of ‘inclusion’ and ‘accessibility’ - things that don’t seem that important when you are living 24-7 in a bubble, but when you step outside the bubble and dare to look into the future you realise there is more to raising a child with special needs than the here and now. It’s scary, but it’s exciting at the same time. And that’s me this year in a nutshell.

I’m especially proud of the little community I have formed here and on my facebook page of like-minded parents and caregivers who have been there, done that, bought the puzzle piece t-shirt. Special mention to those randomly interested people, that take the time to read my blogs to see life from a different perspective to their own. Go you! I am eternally grateful for these wonderful people who take time out of their day to like, comment and share my random thoughts.

To know that there are others out there on similar parenting journeys is very powerful. If you think that my writing a blog is helping you, your words and support helps me three-fold! I’m challenging myself in ways I never expected this year, pushing my boundaries and being brave in my personal, professional and parenting choices. I’ve been on an advocacy course, placed 3rd in a writing competition, joined my daughters school board of trustees, co-ordinated the local autism nz street appeal, had several of my blogs published on websites and networked my arse off this year! None of this would have been a remote possibility without the support and encouragement I have received from visitors to my blog.

2016 will hopefully be more of the same partnerships as well as creating new opportunities, listening especially to actually autistic individuals, as well as other voices in the community that often get overlooked in favour of academic 'experts' and bloggers who prefer the sound of their own voice to the actual voice of the child they are writing about!

On second thought, I'm not going to jinx myself. I actually do have goals to achieve next year I would like to achieve. Instead I will promise to exercise more, swear less, learn a foreign language etc etc and let’s check back this time next year and see what progress I have made.

Wishing you all a happy, prosperous, relaxing and safe new year…

After all the compromising, planning and tough decisions made well in advance of the big day, Christmas day for the Corletts was… Well, different!

As planned, Jason and Sophia had a quiet and event free day planned at home, and Ryan and I planned to go to a big family lunch away from home.

All was going splendidly - Jason took sophia for a walk and were working their way through a hamper of christmas edible goodies, they were happy and relaxed. Ryan and I arrived at christmas lunch and as I chased Ryan from room to room hoping he didn’t mush any chocolates into the cream decor, a relative told me to sit down and relax.

Eventually I did. The lindauer helped. I shut my eyes and let the sun warm my face. I felt my shoulders drop and my fists unclench. Ahhh this is the life - sunshine, laughter, a glass of bubbles and massive cheese board right at my fingertips, one happy child in my midst lapping up all the attention from his rellies he could handle!

I had got about two mouthfuls into christmas lunch when my phone rang. It was Jason telling me that Sophia had rolled her ankle on the trampoline and was refusing to put any weight on it. Shit!I could hear her gasping and whimpering in the background like she does when she has an ear infection, so I knew it was bad. My mood automatically switched from ego-drive to mummy-autopilot and I wanted to be with her more than I can say. My brain started to fizzbomb… What if it’s broken? How will she move around? I hope she’s not in a lot of pain. How will she keep still if she needs an x-ray? That is a massive sensory can-of-worms about to be plopped right in my lap!

Without the communication skills to tell us how and where it hurts, its always best to err on the side of caution, so I agreed that she needed to see a doctor ASAP. So off we raced (in bumper to bumper traffic all the way) to the A&E department.

After 2 hours waiting for a doctor and another bumper to bumper drive we arrived home - complete with a few more grey hairs, worry lines, sunburnt arms (from sitting in traffic in the sweltering sun for ages) empty tummies and Sophia with a bandage around her badly sprained ankle.

Later that night, the kids were finally asleep and Jason and I sat in silence, feeling quite wrecked at the end of a long and unexpected day. ‘Well, that was different,’ I said.

I thought back over all the days events and I felt angry how it had all turned out, despite the fact that it was nobodies fault and totally out of our realms of control. We all needed a break away from reality, and from the drama that seems to follow us like a thundery rain cloud follows wile coyote on a bad day. I had so dearly wanted us all to have a nice experience on christmas day - for us parents to relax, for ryan to be showered with attention and for sophia to have a happy day full of treats and no upsets. But just like it always does, something went awry and we all ended up more stressed than we did at the start of the day. Christmas next year is cancelled!

Reality kicked back in. ‘Get over yourself, Rebekah,’ I thought!

Think about all the people worse off than you. People not blessed with a family to spend christmas, let alone the other 364 days of the year with. Think of that family you passed in the traffic jam who lost all their possessions and home in a fire this morning. Today was just a blip. End of.

I decided then and there this day wasn’t going to define the Corlett's experience with christmas this year. One silly day cant override all the good fortune and christmas feels we have had over the month. Sometimes it might feel like the world has it in for us, but we are resilient and WILL NOT let days like today rule who we are and how we fit into the world.

The main thing is that we are all happy, healthy and safe. A sprained ankle will heal, its no big deal. Ryan will have other opportunities for fun days out, and us parents will have opportunities to relax outside the bubble (eventually!)

We are resilient, and determined. In fact we are doing ‘Corlett Christmas 2.0’ - this time at home, on solid ground, just the four of us on new years day to make sure that we right the wrongs of 2015 and welcome in 2016 on a positive note.

2016 come at me bro!

If Santa was to grant each of the Corlett family one wish each they would be: A stress free day for me, a restful day before a busy boxing day at work for Jason, a happy, predictable day for Sophia and an action packed, social day for Ryan.

The easiest way to achieve all of these things is to split in two groups for the day - which seems a bit extreme, but it makes perfect sense to us. So I will be taking Ryan an hours drive away to spend the day with my big crazy family, and Jason will stay home with Sophia to spend a quiet day at home with a few special christmas treats.

Yes, it will be hard spending the day away from my husband and daughter, I know its the best way to make the day special, and stress free, for all of us.

In previous years we had tried to please everyone and attend multiple Christmas events on the 25th. It’s always hard, everyone wants a piece of you when there are cute little kids involved! The attention and expectation placed on children and the traditions around christmas is especially hard for Sophia to deal with. It is completely overwhelming (and exhausting) for families, with or without autism. Solidarity, mums and dads!

For the last couple of years we have just done our own thing at home - no travel, no hassle, no stress - and to be honest, it has been lovely… But a bit of a non event (for those of us who enjoy such events, that is!).

It may work, it may not - but it’s worth a shot. Here’s why…

Sophia doesn’t like big loud gatherings of people. I love my family dearly, but Sophia will not cope with the jolly festive environment. She will literally climb the walls, burrow under mats or furniture, run as far and fast as she can to avoid the noise. It’s nobodies fault, that’s just part of who she is. Jason and I know this because we have tried and failed many times before.

If Sophia is upset, I can’t relax, Jason can’t relax, and Ryan will fade into the background, you won’t even notice he is there with all the drama Sophia will create. I’m not ashamed of any aspect of my family, I embrace our differences and would never shy away from people because of it. But if I can avoid making a scene at a family gathering, I will.

Sophia’s need for space probably affects Ryan the most out of all of us. I would love for him to experience a big, exciting family christmas, and to run around with his little cousins - and exist outside of Sophia’s shadow. This is his chance.

You don’t have to feel sorry for Sophia, or Jason for that matter. They will be having an equally nice day eating, playing and doing all the things they enjoy most as well!

Jason and I are fine with this decision. We know that sometimes one of us has to take one for the team, and this is one of these occasions. We are not setting any dangerous precendence here. It’s just one day out of the year, people! Remember, our family experience is different to most, our reality might not be the same as yours so please respect our wishes!

My christmas plea to you all - Do what’s right for you - there’s no point stressing yourself out to the point of exhaustion if it is going to create negative family memories for you. If you can achieve this, you have the best chance at delivering yourself and your family into the new year happy, calm and well rested. Winner, winner, Christmas dinner!

Eleven months out of the year, I am a staunch believer in living within my child’s realm of tolerance. Oddly, some sort of seachange occurs towards the end of November and by December 1st I am in full Christmas mode, ramming every bit of traditional christmas cheer down everyones throat like a stale piece of fruitcake.

Why? Maybe its because a small piece of me wants Sophia to love christmas as much as I did as a child. But that’s not Sophia. And that’s no christmas tragedy - that’s just the gorgeous, unique little person that she is.

It took me a few years of trying to take her to a huge local free christmas party for special needs kids, which 1, 2 ,3 years in a row ended in disaster…As in a total sensory overload. I look back at those years now and think - what the hell was I thinking? Why did I put Sophia through that? She didn’t enjoy it, and the whole family was left feeling totally grinched out for the rest of the holidays.

So this year I decided to change things up a bit. I researched the possibilities for enjoying christmas activities within her comfort zone.

First of all, we have ditched the obligatory photo with santa in the mall. Why would I want a framed reminder of Sophia digging her fingers deep into her ears to mute out the audio nasties in a heaving mall? Everyone loves seeing a picture of a young child with santa, but when that child is in physical pain from sensory overload I have to draw the line. I can photoshop a santa hat on her school photo and throw some glitter on it for a festive feel instead!

Secondly, I decided to host our own christmas party by hiring out a fun, familiar and secure space (Ryan’s kindergarten) for a relaxed get together with some other ASD families. There were no rules, no set timeline, no massive crowds - it was just perfect. The kids all had a happy experience playing independently but knew they were part of a party, and us parents got a chance to socialise and relax in a safe environment for their children.

What I liked most about that experience was the opportunity to share the experience with some fellow mums who know what it’s like to feel excluded from the ‘typical’ family christmas experiences.

The icing on the (christmas) cake came quite unexpectedly at 7am last Saturday morning.

A local department store had agreed to open their doors to ours and a select few families with kids with ASD an hour before they opened to the general public. We were able to enjoy a sensory friendly shopping environment, minus the crowds, noise and other nasties which make this sort of outing a no-go usually. What a treat!

Sophia has a set routine when we have gone into this store before - turn a hard left at the automatic doors and head straight to the kids DVDs section to find the Peppa Pig DVDs. Then we head up to the kids books corner where she hunts out the same book to thumb through before I’m able to nudge her in the right direction towards the toy department. Its that familiar routine that makes the busy, noisy echoey environment more digestible I guess. I don’t think she particularly enjoys this experience, no matter how much I try to make it fun, so we don’t often go there these days.

However on this occasion, she seemed calmer, with no panicked movements whatsoever. We had a great time, it was my equivalent of going to a public christmas carols service and Sophia being the lead singer. She was a star from beginning to end. Warm fuzzy christmas feels galore.

Suffice to say, this is the first Christmas in recent times that I am still feeling joyful in the lead up to the 25th, with no sign of festive fatigue whatsoever. Grinch be gone!

When it comes down to it, my girl doesn’t care about festive table settings, santa hats or how much anybody spent on her presents. Sophia just wants to feel happy, safe and relaxed - just like any other day of the year. Maybe that’s a lesson we can all learn from our kids.

I had my doubts about adopting the label 'advocate’ before attending the recent Arts Access Advocacy: A National Partnership workshop. My cautionary approach harked back to a bad experience I had at a public meeting a year or so ago. It was advertised by a well intentioned autism non-profit organisation as a community event for caregivers, family, friends - anyone who wanted to engage with like-minded folk and the local support network, which was a great idea in principle. What started out as a welcoming and inclusive atmosphere, soon descended into an all out bun-fight over funding and support between several representatives for rival organisations and service providers. They came armed with an agenda and a soapbox which they stood on to rattle off multiple acronyms and industry terms. They called themselves ‘advocates,’ and they came to push their cause... but in their loud and brash approach, the families, loved ones and actually autistic individuals in the room were left feeling confused and even more socially isolated than before. This made me so angry! Their noisy protest dominated the conversation, drowning out the voices of the ‘quietly interested but easily scared off’ voices whose views are so often lost in the crowd. These are the voices that we need to hear more from - the people that live every day with disability, not the paid professionals who attend meetings within work hours. Of course these people play a great role in the disability community, but they are now well represented. Instead we should look to the smaller, quieter individuals hiding in the back row of the same meetings... Imagine the wealth of experience and knowledge in the wider disability community currently untapped due to being constantly talked over and involuntarily on behalf of. In the early stages of my blogging career, I thought that to be relevant, I needed to be the voice of my daughter Sophia’s autism. That’s what all the most popular ‘autism mum’ type parenting bloggers were doing. Sophia doesn’t talk (yet) - so how would the world know what her life is like if I didn’t spell it out for them? With time and experience, I realised that by acting as her mouthpiece I was robbing Sophia of her own opportunity to tell her own story in the future. Now, I only write from my own perspective. In doing this, I am free from having to guess what autism and Sophia’s world is like. I can emote my own unique viewpoint with pure honesty. At the workshop I listened intently to all of the experiences of the participants. Over the following days it became clear to me that an ‘advocate’ is simply a voice. It doesn’t have to be the loudest or the most persuasive, it just needs to be genuine. Honest emotion, devoid of drama or prejudice rings loudest and strongest for me. Advocate is now a label I am happy to adopt! We all have a voice, we all have an opinion. Some of us prefer to keep it to ourselves, other are happy to share it with an audience. That is the only prerequisite - if you are willing to share your voice, then you can be the greatest advocate for your cause. When a voice carries a persons honest feelings, opinions, fears and hopes it can change the world. No soapbox required.

#arts #access aotearoa

Even before I arrived at the Arts Access Aotearoa workshop I was a bundle of nerves - what the hell was a ‘mummy blogger’ from the Kapiti Coast doing here? What could I possibly contribute to a symposium on Advocacy and Accessibility to the arts in NZ? This was as far out of my comfort zone as I could imagine, which filled me with anxiety and the want/need to run home and hide under my duvet.

I recognised some of the faces, names and twitter handles from the disability community and felt instantly intimidated. My half-arsed blogs just weren’t at the same level of quality or academic content to be relevant, surely.

Up until now I chose to advocate for warm fuzzy causes like acceptance and awareness. I hide behind this fact, and my laptop for that matter! Coming face to face with people who are already fighting the fight for the rest of us passive protesters is daunting. I don't want to show myself up or insult anyone with any disability related faux pas (do I look at the interpreter or the deaf presenter when I’m asking a question? Am I purposely talking loud/slow to a blind person for no reason?! Should I open the door for them or is that condescending?)

As time passed, my anxiety disappeared. I listened, I smiled, I made notes - slowly but surely piecing together all the thoughts and experiences that initially seemed so different to my own and realising that they were somehow similar to mine.

We are all just people living our lives the best way we can, right?

We all watched a deaf short movie, completely devoid of sound, with captions. For me it was alien, awkward and completely discombobulating. At one point I even felt dizzy! With a foreign subtitle film you can get a sense of what is being said by the tone they speak in or a change in pace of the background music. I was struggling to juggle the captions with the visual storyline, and the complete lack of sound was off-putting. I really wanted to enjoy the movie, but I couldn’t. ‘This isn’t fair,“ I thought. Then an interpreter began to read the captions for the sight impaired participants and I was able to enjoy the remainder of the film.

For a moment maybe I felt what it was like to be excluded from an experience because of something I couldn’t control. I felt cheated, and annoyed. How unfair. It shouldn’t be this way for anyone.

To be included in a group or community is so important. It gives us strength, direction and support. It also makes us feel valued and free to be ourselves.

I entered this workshop not sure where I would fit in, if at all. My ideologies and senses were challenged and I left with a sense of community, belonging, and a strong grounding in who I am and where I am heading…. Forward!

to be continued…

#ArtsAccessAotearoa

In the summer of 1997 I spent my Christmas holidays working in The Body Shop in Lower Hutt. Talk about a sensory overload - the shop was always heaving with panicked last minute shoppers scrambling for the last peppermint foot scrub or tea tree giftset for their loved one. Boney M’s christmas album was playing on loop, and the line was out the door for the complimentary gift wrapping service. I’m sure I was sweating dewberry scented perspiration from every pore.

One very busy day, an odd hush reigned over the staff and shoppers. “OHMYGODDD” my teenage work mate screamed as she pointed to a giant male figure walking in the shop.

It was Jonah. Jonah Lomu. The All Black. A legend. In my shop… Sniffing my tangerine glycerine soaps I had restocked an hour earlier. My heart was beating faster and faster as I watched him purvey the shop, shyly smiling at all the (mainly middle aged women) customers quite rudely staring at him. As I watched him pick up a lavender bath bomb and walk towards my counter, I thought I was going to vomit with nervousness.

He was so shy and unassuming, not at all like the mighty Tongan warrior on the wing who had successfully bowled over 1, 2, 3 englishmen in a row to reach the try line in the last world cup. As he was turning to leave the shop, a jolt of braveness surged through me and I squeaked “Merry Christmas, Jonah!”

“Thanks. You too,’ was his reply.

I told anyone and everyone that would listen that Jonah Lomu had wished me a Merry Christmas (even though he was technically forced into response). To this day that is my greatest ever claim to fame.

Days, months, years passed. Jonah’s fame and legend peaked and then slowly but surely started to lessen. The papers said he was unfit, lazy…. they added that he didn’t deserve to be an All Black, and wasn’t even good enough for the provincial side he played for. He was past his best. A one trick pony who can't live up to his previous glory. And silly old us believed the hype. We cheered as he bowled over rugby opponents, and then yelled insults at him when he dropped the ball or couldn’t cross the line.

Little did we all know that the reason he had gone from fastest to the slowest in the All Black fitness tests was that he had been battling a rare and life threatening form of kidney disease, called Nephrotic Syndrome for many years. He organised his international career around bouts of dialysis, was in constant pain and now needed a transplant or he would die. We were shocked, how could this be?

Over the years he seemed from fade from public view. I remember a friends relatives travelling from the UK to NZ and being so excited about getting their photo taken with him. Why, I thought… it’s ‘just Jonah.’

Fast forward to 2002… I was travelling around Ireland on a 18-35 bus tour (as you do). I lost count of how many fields and historic churches we passed, it was all a bit of a blur. Suddenly out of nowhere a big billboard appeared with Jonah featured on it, advertising a brand of water. “That must be years old, Jonah hasn’t been an all black for years,” I commented to the irish tour guide. He gave me a puzzled look, and explained what a big celebrity Jonah still was in Ireland, this was a new poster, a new advertising campaign.

I couldn’t understand why an out of form EX allblack would still be relevant overseas. If he wasn’t an AB how could he still be relevant? It was 2002 - Peter Jackson was about to release the second Lord of the Rings movie. Everyone I talked to about NZ associated us with hairy footed hobbits, not an ex all black.

A few more years later I was at a Dominion Post work function at Westpac Stadium. My friend and I spotted a crowd of people. ‘Who’s that over there being interviewed by the news crew?’ Oh… its ‘just Jonah’ again. He looked smaller than I remembered back in the 90s. He still towered over most of the rugby players though. I’m not sure if it was that same bolt of braveness or too many of the sponsors alcoholic products that urged me on to go and say hi.

“Hi Jonah! You won’t remember this but I once sold you a lavender bath bomb in 1997 in Lower Hutt.” (cringe)

I looked at him not expecting any great response but he asked me where I had worked, what time of year it was and was genuinely happy to listen to me. He said he remembered - but chances are he didn’t remember, after all there’s only one Jonah, as opposed to millions of people who would have interacted with him throughout his career. We talked about whether he missed living in Wellington, his recent wedding and then we had a photo together. I was on cloud nine.

I walked away feeling so lucky to have been in Jonah’s presence. All those years I cursed at the tv screen and felt completely vindicated to do so I neglected the fact he was also a person, with a family, and a great talent, who had put his health concerns on hold to give 100% for his team. In that moment I reassessed what I considered to be a ‘legend.’ Those irish were right, he was relevant. He was a star. Just as much as any current all blacks, let alone any hairy footed hobbits.

Last week Jonah died.

I have read and listened to many new stories on Jonah’s career this week. ‘Legend,’ ‘a giant among men,’ ‘immeasurable talent’ ‘a global sporting phenomena’ and other cliches have been bandied around across all forms of media. And they are all true. For me, I will remember Jonah as the unassuming giant of a man who I once sold a lavender bath bomb in The Body Shop, who may or may not have remembered it many years later but made me feel wonderful and very lucky to have spent a brief moment of my own history in his presence.

Moe Mai ra, Jonah.

I have some of my best thoughts about life on my daily walk. I guess it’s because I'm alone, and I don’t have to worry about what the kids are doing, or search for potential hazards in my peripheral vision, nor worry about who is looking down their nose at us rag-tag bunch of Corletts.

I start out feeling like the weight of my world is hovering above me like the black and thundery rain cloud that follow cartoon characters around when they are having a bad day. Step by step, these worries get left behind, my mind clears and all but empties. That allows several random thoughts to skip joyfully across my mind. Boy do I have some hum-dingers.

Blog ideas. Small business ideas. Where I would go out for dinner tonight if I didn’t have to cook it myself. What I would do if I won lotto. Five and 10 year plans. I’m effectively giving myself an IEP.

Similar to the majority of IEPs I have attended for my kids, most of my own goals and ideas don’t actually pan out, but boy do I love the places my brain goes in the process on these walks.

Some of these concepts I am happy to keep in my head… Like all the brave, ballsy, expletive-ridden things I should have said (but didn’t) to all the doctors and so called ‘experts’ who have made cruel and unfair comments about my special kids’ future potential.

Today, as I was walking, I was thinking about the word ‘neurodiversity.’ To those of you not in the know, neurodiversity is the concept of neurological differences being recognised and respected as any other human variation. In other words, being labelled not wrong, just different. This concept covers Autism, Tourettes, ADHD, Dyslexia and Dyspraxia to name a few.

Truth, many people on the spectrum simply use a different train of thought at a different rate of knots to come to the same conclusions as a brain labelled neurotypical. It’s no crackpot brain-fart… In fact if you think about it, it just makes good sense.

Next I thought about a comment I read on a facebook page from a mother of a child on the spectrum who had been told by her church that the autism was a curse on the family, and a punishment from god. It always shocks me how some people are so misguided in their views on a condition now affecting 1 in 45 children in the US.

I say I’m shocked, but I’m not really… Earlier today, my husband and I took both kids to the playground, and were avoided by other parents like the plague. The kids weren’t being naughty or screaming, or anything particularly anti-social. Sophia makes loud excited verbal stims when she is happy, and she was having a great time spinning a steering wheel on a tractor. A mother ran over and swooped up her child away from Sophia and rushed her away like it was in mortal danger.

!!WARNING WARNING happy child who has autism playing . Evacuate the area immediately!!

Oh the brave, ballsy, expletive-ridden things I thought of to say to that mum (five hours after the event).

Argh. Some people. What’s it going to take for them to realise that autism isn’t something to fear?

Maybe a Kardashian on the autism spectrum would do the trick. A spin off mini-series and glossy magazine cover would start the conversation some people need to take part in to get a clue. I jest, but the power of celebrity culture is scarily real. People can’t even make sane decisions for themselves without checking for a celebrity endorsement these days. How else do you explain Donald Trump’s rise in politics. Crazy.

So there you go. From winning lotto, to neurodiversity, to curses from god, to sit-on-tractors to the Kardashians and a Trump to trump it all.

I told you my mind goes to far flung places on my daily walk.

**This was my entry in the Kapiti Literary Festival creative writing competition being this weekend. I'm proud to say - I came 3rd! Actually I'm proud for many reasons about this experience - first of all, entering this competition was a real step outside my comfort zone, I shy away from competition, I don't like the idea of being judged on something I do for the love of it, rather than to be the best... Secondly it was a challenge to write on a specific topic (which was 'I've got to use words' - a T.S Eliot quote) and within a set 500 word limit. Finally, and most importantly to me, I took the opportunity to raise awareness of autism to a part of my community. Proud! It was surprisingly emotional for me to hear another person read my entry aloud in front of a crowded room as part of the festival launch on Friday night. There were some teary eyes in the audience (mine included) by the end of the reading. It wasn't meant to evoke sadness or pity - and I think the audience 'got' that. It was a simple tale of a mum doing whatever it takes to connect with her child. So without further delay, here is my entry - 'I use my words.' I hope you enjoy x ............. My seven year old daughter is standing by the fridge. She grabs my hand and guides it towards the orange juice, and hums. ‘Would you like a drink, Sophia?’ She smiles, flaps her hands wildly and jumps on the spot. She drinks her juice, drops the cup on the floor and walks to the window to stare at the branches of the big Pohutukawa tree in the backyard swaying in the breeze. Suddenly, and quite inexplicably, she puts her hands to her ears, and gasps like she is in pain. Tears fill her eyes, and she sobs uncontrollably. I try to comfort her with a hug, stroking her hair and kissing her cheek, but nothing works. “I love you Sophia,” I whisper in her ear. She pushes me away, wipes her nose on my sleeve and sets to work lining up several toy trains in a row on the floor. She is happy... for now. Sophia is seven and has severe autism. She does not talk - she is yet to call me ‘mum,’ yet to say ‘I love you’ back. That doesn’t stop me including her in my conversations. I ask Sophia’s opinion on the weather, what she would like for dinner, and if she wants bubbles in her bath. I persevere because I know she is listening. Her expression might say ‘I’m not interested,’ but I know she is. Some people might think I’m dreaming - that my daughter is not interested in communicating at all, but they are wrong. However lop-sided our conversations may appear, we find a way to make both sides wants and needs heard. With a lot of practice and patience, we understand each other loud and clear. Who knows - one day Sophia might talk. She may tell me all the answers to the questions I have asked her over the years. However, it won’t mean she is ‘cured’ of autism, nor any more functional a member of society than she already is. That’s because Sophia is not broken, she is already a whole person. She doesn’t need to be fixed. My job as her mother is to do whatever it takes to fit into her world, within her limits, her rules - not the opposite. In the meantime, I can use my words to explain my daughter and her autism to the rest of the world. Where some might see ‘strange’ and ‘sad,’ I see ‘beautiful’ and ‘happy.’ Sophia is quite happy existing on the peripherals of society, just popping her head in to our world every once in a while to say ‘Hi, it’s me, Sophia. Don’t forget me, I’m still here!’ Hi, Sophia. I see you, I will always include you, I love you. There aren’t enough words in the world to express this fact, so I will give you a smile, a hug and a kiss instead.

Now the ‘hard’ part of applying and having funding approved for a respite carer is finalised, it should be a doddle to find a carer, right? Thats what I thought, until I decided to sit down and make a top 5 list of qualities I was looking for in a carer. The ink intuitively ran out as I approached number 19 as if the universe was telling me ‘enough, already!’

I was amazed that I had managed to fill a whole page with requirements, personal qualities and non-negotiables without even trying. Not one of the points were an accidental duplication, each of them were valid points which I nodded my head in agreement with on a third reading. All sane and reasonable points, I thought. See what you think… (And yes I realise it’s laden with contradictions!)

SOPHIA’S CARER MUST BE:

1.Kind 2.Patient 3.Reliable 4.Not a psycho/pedo - a.k.a SAFE. Clear police check 5.Kid and Parent friendly. Relatable 6.Sense of humour (very important) 7.Exprienced - special needs carer in the past a MUST 8.Knowledge of autism - but not a ‘know it all.’ I don’t need a lecture or ‘how to’ lesson… 9.Good communicator - keep us parents in the loop 10.Laid back - but not a push over. Sophia will have them for breakfast otherwise 11.Come with References - either from past jobs or word of mouth from friends of mine 12.Flexible - can go with the flow time and needs wise with Sophia 13.Able to fit into Sophia’s ‘world’ and rules of play 14.Not too bubbly or over the top happy - Sophia prefers calm and quiet 15.Cuddly old ‘Mrs Doubtfire’ nana type would be nice but not essential 16.Physically able - ready to run at any time 17.Prepared for anything and everything. It’s a ‘mixed bag’ kind of gig 18.Honest - I need to know this person is trustworthy at all times and telling me the truth.

I reckon I could have filled a second and third page, had my pen not staged an intervention.

Despite my thoroughly thorough list, I don’t think my criteria is unreasonable. Sophia is a happy little 7 year old girl, an unpredictable toddler and an excitable jack russell terrier all rolled into one! Plopping her in front of the TV with an ipad for a couple of hours won’t cut it! This is a job for a professional child carer with a background in autism who can fit into my daughters world, not the opposite.

Oh god, where the hell am I going to find this super nanny of sorts? …Actually is the Supernanny available? That would be perfect… Mrs Doubtfire? Mary Poppins? Or even better, a pre-programmed ‘synth’ robot like Anita from Humans? My mind is buzzing with anxieties over the enormities of this massive task.

The simple solution would be to use a person Sophia is already familiar with. However, our support network is limited - an unfortunate bi-product of ever decreasing circles of friends, our small and widespread families, and our insular lives somewhat complicated by autism’s preference for predictable life within our four walls of home. I could ask a teacher at school, but I’m sure their own weekend is their respite from the special needs world they live in during school hours!

It’s hard handing your precious and so very vulnerable child over to an outsider, yet I have to do it on a daily basis. Taxi drivers, teachers, therapists, an ever changing staff of teacher aides, doctors… the list gets longer as Sophia gets older. She can’t tell me if she likes or hates someone, I just have to rely on instinct. It hasn’t been wrong so far (as far as I know). Fingers crossed I get it right this time too.

For me it’s like handing a new born baby to outsiders every day for the rest of your life, in the hope that they are equally respectful of this situation and behave accordingly. You are not only entrusting them with your child, but with your own outlook on the world - something intrinsically fragile and precious to you as a parent. It shapes who you are as a person, a parent and as a citizen of the world. I want to feel that I can rely on the kindness of other people.

No matter how much we want to keep our special children close and safe from harm, at some stage we need to let other people help - for your child’s development, as well as your own.

As I write this, I am no closer to finding a carer for Sophia. Despite my families need for respite, I won’t rush this decision. The right person is out there, and I won’t settle until I find someone who fits my thoroughly thorough list of requirements! Wish me luck!

This school term started with a hiss and a roar, with my most interactive and productive IEP to date, followed by a home visit by a super helpful needs assessor who reviewed our current allocation of respite days for Jason and I, based on Sophia’s diagnosis.

In preparation for our assessment, Jason advised me not to do any housework, and wear my worst clothes to appear stressed and in need of extra help. We get a few respite days a year which we use to have a weekend off every couple of months, which isn’t much but it’s something. Ironically, he need not have suggested this, as by the time I had the kids dressed, fed, and Sophia was off to school, there was no time for tidying of any such description.

To be fair, the house that the assessor walked in to was a completely realistic depiction of what it looks like on any given day around 10am. The carpet was in need of a vacuum… actually in need of replacement, it’s bald spots glaringly obvious. The walls have chocolate (I hope) finger marks and crayola scribbles all over it, we have one piss stained couch left, after Ryan pooed on its matching chair a month ago, stained beyond redemption, and duly sent off to the dump (screw you toilet training!)

I had been so busy picking up toys and miscellaneous crap off the ground, I had completely forgotten about my own shabby appearance. I answered the door and welcomed the assessor, and then had to check I didn’t have my pj’s still on… Thankfully I had put something half decent on - but forget about my hair and make up. My mother would have been horrified. A Stepford wife I am not.

Over the following hour we read through our last review, from three years ago. What a trip down memory lane that was. My personal favourite was the line ‘Rebekah and Jason continue to expand Sophia’s world of experiences in the hope she will remain adaptable to change.’ Shit, the ‘S.S Adaptable’ left the port long ago, lost somewhere at sea amidst the autistic triangle. Our world is very much a set routine, flexible schedules are somewhere down the bottom of our collective ‘to do’ list, below ‘take up hip-hop dancing classes’ and ‘compete in an iron-man.’

This time, I was completely honest about Sophia’s progress. By the last question, I felt happy that she had an accurate snapshot of my family as it stands today.

When she asked how we were using the current respite days I was honest again - our support network is so limited, and the people we can call on currently have stressful lives of their own - to the point that despite our need for a day off sometimes, we don’t want to be a further burden to them, so we don’t ask.

The assessor looked at me with a serious look on her face and said “well if we did offer you extra respite days, would you be able to benefit from them - as in get respite yourself?”

Yes. Definitely. Abso-flippin-lutely!

A couple of days later, she rang to let me know that the review was complete and they would like to increase the number of respite days for our family… Enough to make a real difference.

I’m in two minds about this result. Yay! We got more respite - we needed it... Boo. We got more respite. We reeeeeally needed it!

There was no need for dramatics or staged destitution, the assessor saw the real us - two frazzled parents, struggling and in need of help. It makes me sad that we do need that extra support in doing something that should be so effortless. Yet I am happy and so thankful that there is support out there to prop up families like mine when they need it most.

So I write this with utmost respect and thanks to our wonderful assessor - for seeing and hearing our call for help and giving us a real chance at having the occasional break in order to recharge our batteries and be better parents as a result.

Now for our next challenge... Finding the perfect respite carer. Wish us luck!

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I am Rebekah Corlett...