Northwest America and our adventuring crew

I find myself still settling back into being at home after our big trip away (check out our photos along the way here: https://instagram.com/explore/tags/quarmbysusanorthwest/ ). It's been about 10 days since we returned, and we were away for 22 days - not that long really. But it was a full three weeks!  Life at home is full and busy but in a rather different style.

One thing I love is that we are raising little travellers. It's a deliberate choice, and does mean that other we prioritise things differently from many families, but it's something I am grateful for. And am reminding myself of, as I look at our broken oven in the kitchen where I type this ;) We're still lucky that it's possible, absolutely, and it requires determination. One car, not two. Waiting and budgeting for that new oven. Planning and tracking and dreaming. We choose travel, and I love that.

When we were returning through Australian border control, Cedar was telling the customs officer that his backpack was from Japan. But that we just came from America. They do find it exciting, but it's also a repeating theme of their life experience. While they each had the same challenges and occasional meltdowns when travelling as they do at home, all of the kids found things to like and enjoy in the different places we visited. And I hope we are also teaching them that some family activities are motivated by us, the parents, and what we would like to experience. (I may have had to explain that to them a few times when they all wanted to just stay in playing Minecraft...)

It feels like I'm writing with a slightly melancholy tone, though it's just that I have a lot of brain clutter going on... pulling out specific thoughts is like putting my hand into a bowl of spaghetti to retrieve a lost tooth. Or something like that, anyway. The 'back to normal' transition, still, perhaps, with a normal that is fairly chaotic at the best of times, LOL.

So, our Northwest trip, the quick overview version: We flew from Melbourne, via Auckland to San Francisco, where we stayed at Fisherman's Wharf. After four days we took an overnight train to Portland, Oregon. Cedar thought the sleeper train was the best thing ever! He was so excited. Unfortunately Amtrak lost our luggage, so when we arrived at Portland we had to dash out to buy underwear for everyone and a few essential changes of clothes. Our Portland hotel had given us a huge room upgrade, though, so that was amazing.

After a few days in Portland, we took the train to Vancouver, BC (Canada). Arriving in Canada in almost the middle of the night was interesting... Poor Cedar had to be woken up to go through customs in the train station. Vancouver was a full three days, and then an early departure to catch the train again. This time to Seattle, Washington, where we spent the next 6 days. Finally, we flew back to San Francisco for one last day - organising ourselves and last minute souvenirs - before flying home. The kids loved flying, as well. Independent entertainment control was probably the highlight there ;)

Things we learned along the way:

• People will still stop and offer assistance if you seem to look confused while trying to find street signs. So kind :)
• Pork Belly makes a pretty spectacular cubano. SO yum.
• Good coffee can be found in America. Really. (And by 'good' I mean a strong espresso / latte to our personal taste). You just have to be more deliberate / discerning about what you are looking for than in Melbourne. Though I am pretty fussy anywhere, so I'm used to that ;)
• Exact coin change for a bus ticket is a lot more tricky when you have to buy five of them. Sorry Vancouver, that didn't really work for us.
• Raccoons are really cute.
• A submarine tour is really not a great place for a strong / heavy 10 year old to have a meltdown. Especially if they run to a schedule.
• Alaska Airlines were awesome. Even though it was our shortest flight, the kids were invited into the cockpit and the flight attendant gave them all "wings" pins to wear. Plus everyone was super nice.
• It's fun to make friends in new places. That was a real highlight for all the kids.

The part and the whole of our #autism family

So, things were up in the air for our family for about 6 weeks or so regarding this potential huge change. There was waiting. Exploring. Investigating options. Weighing benefits. Cognitive testing. And my mind racing, worrying, analysing, as we gradually came to the crunch of making the decision about Ash's schooling.

On the one hand, Ash's emotions were telling me that he needed something more than what he currently has. Whether that is about support, therapies or simply insight, we needed to think about what was best for him. So, it was recommended that we consider this particular school - a limited time offer, as he is at the upper age limit of enrolment already, being in year 4 this year.

Ash and I did a school tour, and he did two trial mornings in the classroom there. He liked it. He got along well with the other kids in the class. They liked him. The school suggested he might begin full time in just a few weeks. We had one full day trial left to complete before making the final decision.

Then Cedar got chicken pox (mildly, as he is immunised), and I let them know that Ash had been exposed. This postponed the full day trial for a couple of weeks. And in the meantime, my brain kept ticking over a million miles a minute. I had a meeting with the principal at the kids' current school. I had conversations with another school parent who has a great understanding of Autism spectrum kids. I had a conversation with my daughter's psychologist. I had a conversation with Ash's psychologist. I did research. Ben and I discussed the pros and cons, the costs and benefits - both literally, and to each of us, as well as to Ash (primarily, loss of his aide support). I wrote lists. Talked it out, juggled my thoughts, watched my kids.

And then I sat in a cafe in a shopping centre, with a coffee next to me, and wrote two emails to the specialist school - one to the principal and one to the teacher. Ash would not be changing schools. There was no need to complete the trial days. Their information has been invaluable (and I've since had another conversation with them getting more tips and advice). But our family is made up of more than one 9 year old boy. He is not even the only one on the Autism Spectrum. And, as completely as I love him and want to help him, we are one whole family unit.

You see, I'd been on a rollercoaster of decision making, and things were not crystal clear or self-evident as to what would be the best choice for Ash. But it was like I had blinkers on. I was looking at Ash as an individual, and what might be ideal for him on his own. I knew it would have a high personal cost to me if he changed schools, but I felt that I, as his mother, could sacrifice 15 months of my life for the benefit of my beautiful son.

And then I stopped. Ash is not an only child. We are not a family unit of 2 or 3. There are five of us here. It's not *just* about him, and it's not *just* about me. Sienna is 11.5 years old, a tween girl with Aspergers and ADHD, going into high school next year. How would it affect her if the pressure was on each morning to get ready early, quickly, quickly, or Ash will be late for his school a half hour drive away? How would it affect her if I am unavailable for 2 hours per day? If I feel too frustrated and tired by the juggling act to be a listening ear? As well as practical details, will I be able to take her to her high school transition program, an integration program for additional needs, if I also have to drive Ash in the opposite direction?

Cedar is 5 years old. He'll be 6 in five weeks, and he is in his first year of primary school. Next year he will be in year 1, and if Ash changed schools Cedar would be rushed out of the car, expected to walk in to school on his own, 15 minutes early every day. Is this really a good time for my energies to be so devoted to one child? With no guarantees? As well as all that, while weighing up these decisions our 1 year old dog Sparrow got very sick. She had a sudden and extreme bacterial infection, and I spent a week back and forth to the vet, getting meds into her and sitting next to her almost constantly.

I realised there was also the literal cost to our entire family - a sudden vet bill would be impossible to pay if I tied up all our available family income in private school fees for one child. And with my time commitment to driving 2 hours a day, I would hardly be able to earn any income to help pay for it. Even for Ash's sake, what about the school fulfilled his needs? Would it be worth it? What would happen at the end of 5 terms when he had to return to mainstream school, but no longer had aide support? And would this help when 5 terms later he had to transition again - a third time - to high school?

I know this seems like a big old brain dump, and it is - (epic, in fact, I'm impressed if anyone has read this far!) but it is still only a fraction of the thought rollercoaster I was riding for those 6 weeks. I just wanted to record the conflict, the unknown and unseen by most, that I know so many parents and families go through when weighing up decisions they need to make for their children. Professionals might tell you they think something will benefit your child, and our instinct is to jump in with both feet - yes, of course, let's do that! But even the loveliest professionals are not part of YOUR family, and they don't know the whole story of your everyday life. No one is as well equipped to make these decisions as you are. 

And there might be parts of the decisions you have to make over the years that are about you. Self-care, some call it, or your needs as an individual and not just a mother (or father). We might be reluctant to add these to the scales, on one side or the other, but really, we must. As their primary carers, our wellbeing - or not - at the end of the day is likely to have a stronger effect on our kids than we know. Your happiness has weight. You matter too.

Even though we decided not to make this big change, for Ash to move schools, it was not a decision not to change. We decided to take what we have learnt from the specialist school, take the conversations I had with school representatives and other professionals, and make smaller changes.

Our action plan now is:

• Weekly 'excursions' to reward (and incentivize) Ash for attending school every day of the week, something that is hard for him
• The development of a Sensory room at school and a strategy for including more sensory input into his day.

And that's it. Of course, each of these two things means budgeting, appointments for planning and meetings with school, among other things. But they are two key outcomes of this experience. They will both benefit others as well as Ash, and we are still showing him that what is best for him, matters to us.

It's all a learning curve, after all.

Today, bewildered - #autism and the boy

 

This boy... so incredibly lovable, he has my head spinning at the moment. Today was a particularly epic day. The kind that hindsight would advice to skip, stay in bed, don't even try. But who knows that, in the morning, right?


So, aside from the (not uncommon) reluctance to get out of bed and face school, the 75 minute separation process once I did get him there (all three kids that constant five minutes late), the skeleton onesie pyjamas being worn at school all day and the kicking, fighting, biting, beside-himself meltdown after the final bell this afternoon... aside from that, there's this feeling. The word that fits, I think most accurately, is bewildered.

I know this kid, and I know him really well. But I still find myself bewildered, wondering one day (yesterday to be precise) if a certain pattern will be our new status quo, and then flipping that back again the very next. It's not about the separation anxiety, at least, not specifically. And not about the meltdown - as amplified as his response was, there was a catalyst there.

I think the hardest thing to get my head around is the inconsistency. I am bewildered by what is different from one morning to the next. By the need to make decisions about what is best for this amazing, complex 9 year old boy, with conflicting evidence from day to day, week to week, about what those best things might be. He can be such a joy to have around, and he adores me - his anchor, his mum - like nothing else in this world. But these things won't give him an education. Hugs and teddies aren't going to make him friends. Social thinking can't be learned from one person alone.

At the moment, we are part way through the intake process at Cheshire school, a transitional school for kids with social, emotional and behavioural difficulties, for Ash, as recommended by his psychologist. It's an investigative process, where actual enrolment isn't decided until a certain stage of the process, and we are not there quite yet. We're part way through. So, there have been a lot of considerations to think about, and the possibility of big change ahead. But the possibility of it not happening is there too. It's up in the air. Good things on both sides - the change, or not to change. The private, specialist school, the increased transitions, the hectic schedule for me as the driver (an extra two hours of driving a day), but the chance that this is what will work for him. And the possibility that it won't.

The principal / psychologist from the school observed Ash in his current school and classroom the other day, and we spoke a little later that afternoon. There were a lot of good points, and I agree fully with them all - he engages well with his peers, with assistance can work on the required tasks, seems generally liked by others, doesn't seem anxious within the classroom space. She could see a few things we'd spoken about as well, but the areas of concern were more subtle. These are all true things. I started to wonder if maybe this new school idea won't be the necessary goal. I hope we can avoid the big change, despite the potential benefits, for the sake of appreciating the things Ash likes about where he is at, things he would have to sacrifice to change schools. And, to be brutally honest, save the money, and driving.

But then, today, pyjamas, the morning refusal again, and the chair-tossing, workbook-ripping, heart-breaking meltdown over the end of the day, over time running out, and him not being able to do his show and tell after all. Just a final straw, on a hard day. The red beast took over, he says, and while it took half an hour to come back to a calm place, five minutes after we got home he was all hugs and apology. He's a beautiful boy. And I can easily see it. Tackling life is just a bit too much to ask sometimes.

Family photography and autism, part two: Exercising delight

In my last blog post, I wrote about my belief in the importance of family photography, more specifically for the family with autism 'in the mix', meaning with a family member on the autism spectrum (ASD, or ASC). These are my personal feelings, about something that just makes sense to me, not about any studies or academia or whatnot. This is something that is valuable to me. So, in the first part of this blog series I focused on the value for the visual learner, the autistic person. Read more about that here. But wait, there's more... (I've got a busy little brain when it comes to this topic!)

Spectrum kids often struggle – socially, emotionally, with sensory processing, and so on – with their everyday life. An average school day can be monumentally challenging for them, and overwhelming in all different ways. Their family and home is, even more than for most kids, their safe place. Sometimes, as other mums will know, being a safe place doesn't always mean we get their best behaviour! But we are their haven, and often their translators, in a world of overwhelm and uncertainty. So the bond, the need, is just woven that little bit more tightly, keeping us - as their anchor - nice and strongly secured.

Firstly, this is a precious relationship, a unique relationship, with the beautiful and treasured connection between parent and child, between family members, enhanced by the intensity of the autism experience. From going through the diagnostic process, to the way we look at the world through their eyes, and filter the world for them when we can, there is an added layer to our family life that can be brilliantly rewarding, and supremely difficult at times. This is a relationship that deserves documenting, capturing and remembering.

That this is valuable, worth capturing, enjoying and celebrating, is ever true of these intricate family ties, which are always 'limited edition' and everchanging in every family. And so, this is ever more true of any family with special challenges in their lives.

Secondly, with these additionally layered family ties, these bonds can be even harder to cherish in the everyday. Where parents may be carers, therapists and advocates as well as mother or father; where the behaviours they work through may involve aggression, non-communication, self-destruction and anxiety; where the worries and concern stretch years into the future as well as each hour of the day... these relationships can, at times, be exercises in endurance. Not that there aren't moments of gratitude, reward and delight - and those are wonderful times – but there are certainly seasons where it is hard to stop coping and celebrate. Honouring these relationships is an exercise in optimism and gladness, and a deliberate focus on what is uniquely brilliant about our particularly different kids. Sometimes we're just too tired.

Taking that time to organise, lead up to and participate in a family photography session is beautiful, and meaningful, and a gorgeous testament to the strength you draw on every day of your life. It's a celebration of the individuals that make up your stunningly unique family, and a celebration of the love you share. Because of it all, despite it all, sometimes not and then twice as much again. This is real, this is extraordinary, this is powerful. This is you.

Family photography and autism, part one: Pictures of love

It is my personal belief that it is even more important for a family with autism in the mix to have family photography, even more so than an apparently typical family. Don't get me wrong, I do always feel that it is so valuable and meaningful for families to celebrate their milestones, their togetherness and their beautiful connections. I really do. But my reason for that statement is partly about the person/people on the spectrum, and partly about the experience of parenting with autism in the mix.

Today, I'm just going to talk about the value for the autistic person. Let's just assume in this article that we're talking about a child or youth. It applies to adults as well, and it actually applies to a lot of non-autistic, visually oriented people as well, but in this instance I will use the example of an autistic child. I am also thinking about my own children when I write, so there's my disclaimer ;)

Basically, with autism, a person's visual processing speed is often vastly superior to their auditory comprehension. Temple Grandin explains how she thinks in pictures. My middle child, Ash, for an example from my own family, had a visual processing speed at the 88^th percentile of his age when he was tested at 5 years old. His auditory processing was at the 22^nd percentile. That's a large disparity, yes, which is often part of the diagnostic screening in itself. But it's the real life application that is the thing.

If someone says something to Ash, it is processed far slower than a typical child of his age. Processing time is really important, and if a lot of information is spoken at once then some of that information will invariably fall through the cracks, because his auditory processing skills are not at the level that you might expect. However, if someone shows him something, it is processed far more quickly than a typical child. Visual patterns, systems, instructions, concepts - everything that goes in to his brain through visual means is easier to process, understand and respond to, or take on board.

Being told 'I love you' is beautiful, and true, and supportive. In the moment we say it, it is a meaningful, connective gesture. It is a genuinely lovely gesture, and one which we repeat, often.

My family, photographed by Angie Baxter www.angiebaxter.com.au

Being able to see 'I love you' visually, a gorgeous image of that bond you share, a photograph that becomes woven into the landscape of their everyday, that is beautiful, and true, and strong. That is a visual foundation of what home, and family, really mean to them. With no words needed, that 'I love you' moment reminds and anchors them each and every day, and that is powerful.

Autism, motherhood and photography

Sienna sums us up in magnetic poetry (children's version)

Just over a year and a half ago, I realised what my passion was. Is. Could be. It came to me suddenly, and clearly, and since then has constantly been percolating in the back of my mind. It's not something wildly different, for me, but rather something that has been gaining clarity progressively over the last couple of years. And something that is deeply important to me, both as a mother and a photographer.

The thing is, I am a professional photographer. It's taken me a long time shooting to get to this place, and I've technically been here for a few years now. While I have dabbled in fashion, commercial, nature, and I've enjoyed weddings as well, I feel that I am primarily a family and children portrait photographer. I really love it. Even before becoming a mother, I was always most excited by photographing children – so unpredictable, challenging and joyful.

The other thing is, I am a mother. I was a photographer first, but I've been a mum for over 11 years now. And for more than 6 of those years, I've been a particular type of mum, I guess you could say. An autism mother. I've written about my family before, and they are uniquely amazing and fascinating to me. Sometimes challenging, particularly when transitions or social demands push them past their comfort zone.

Sometimes I feel I need to clarify, I don't have my head in the sand either. Things aren't always easy, but they could be a lot harder too. Today it took an hour before my 9 year old would let me leave him at school. This morning my 11 year old wanted to curl up in the fetal position in the boot of our car because her drawing wasn't perfect, I had to hold her back so that I could take her into her regular appointment with her psychologist. My 5 year old screamed - and I mean really screamed - whenever the sunshine came through his side of the car during our drive home. This is all pretty typical stuff for our everyday life on the spectrum. But that's ok. We have moments. We move on. And I think they're overall pretty brilliant people.

And from here comes my clarity...

My heart feels most rewarded by the surge of love and meaning that I get from offering family photography to other families with autism, additional needs and special challenges. It feels gloriously important and beautiful to me, to be that person for a family, to be there to see them, to see their connection, their bond and their love. To be comfortable and relaxed enough that I react easily and lightly to any difficulties that arise during a photo session, to any uncertainty that comes in to play. I can give you that, the calm, the fun, the seeing of who you are. And, more importantly, the capturing of that.

This is something I can give, that I love to provide, which has value far beyond the cost of a session fee, or anything else. I can give a family a treasure, which is not only an acceptance, but rather a celebration of how wonderful they are. Real, flawed perhaps – as we all are – but true and together and beautiful in that. It's important, it's who your family is. It's your story. It's your wonderland.

This what I am going to do.

Not on the spectrum, but... reading about hyper-sensitivity

Since I have kids with autism, and Sienna also has an ADHD diagnosis as well as Aspergers, I have a few news pages that I follow on Facebook that are relevant to them. Today a link was posted to ADDItude Mag with an article on Hyper-sensitivity, as it is something that is often – while not a disorder, but rather a type – seen in people diagnosed with ADHD / ADD. On another Facebook post, a blogger I enjoy reading posted a comment on Myers-Briggs personality types, which ties in, for me, to the kind of self-understanding that helps with being very sensitive.

I am neither on the Autism spectrum (and yes, I've even done one of those basic online tests to check likelihood / similarities to ASD) nor do I have ADHD, though I have read a fair bit about them. Well, autism in particular. Anyhow ;) I don't believe myself to be on the spectrum of either of these conditions, but there are some traits I strongly empathise with. I've also read about the myers-briggs personality types, and the book 'The Highly Sensitive Person'. So, connecting with today's article didn't come as a surprise, but it is a good reminder.

One sentence that stood out a lot for me was this: “Prior to discovering my hypersensitivity, I perceived my over-the-top emotions as a character flaw. My mom would say, “Why can’t you get on an even keel?” As a child, I didn’t have an answer. This added to my already-low self-esteem.” I find this so interesting, and for a couple of reasons. One is the reminder that I really do fall clearly and undoubtedly into this category, which apparently includes an average of 15-20% of people.

There are no words that stand out more strongly to me from my childhood and youth than “you're too sensitive”, and they didn't stop just because I became an adult. But as a child, it was more confusing, because I didn't disagree, but didn't understand why was there something wrong with me? And also because feelings being 'wrong' doesn't make them go away. If something hurts, but it hurts because 'you're too sensitive', it still hurts, but then there is the added layer of it being wrong somehow. It was something I remember repeating in some of my angsty, sensitive teenage poetry – this idea that I was inherently wrong, but without being able to define what that wrong was, exactly.

It's a formative view of myself that I still struggle with, and so far have mostly just been able to work on recognising it. Changing those thought patterns is a battle for another season, I guess. Recognition, though, has its own strength. Which brings me to another part of the comment above that I found so interesting - “prior to discovering my hypersensitivity”. The next paragraph in the article quotes Elaine N. Aron, Ph.D (authorof The Highly Sensitive Person) - “Recognizing their high sensitivity can help people stop feeling bad about themselves.”

Well that is definitely harder said than done, but I do get what they're saying. And I totally agree, as this is the basis for getting any kind of diagnostic assessment really - such as autism, or ADHD as well. Further understanding can help, both with understanding the needs of the person and with improving their self esteem as a result of that understanding. The Myers-Briggs personality types helped me figure this out when I was a teenager, and a psychologist who saw me at 17 – on the recommendation of my bookshop boss, due to my extreme shyness – only saw me twice but helped me see that I was just a different type of person than most people around me.

My first couple of Myers-Briggs tests showed me as an INFP, a rare and sensitive personality type. Introverted, Intuitive, Feeling, Perceiving, and at 100% of the scale for introversion, and almost that high for intuitive. A few years later, the ratio shifted a little and I've been an INFJ ever since – very interesting, as my slight P preference earlier on shifted to a more decisive J type as I grew older. This was perhaps also in response to being with my husband since that time, as he was decidedly a P personality type, whereas I had only slightly leaned that way.

It all sounds rather more serious than I really view it, which is as a great lesson in understanding and acceptance. When applied to myself, the acceptance – deep, instinctive, self-acceptance – is a lot harder than the understanding for me, but they are all tied together. And also with this third point which drew me in straight away, which is that “Emotional pain and physical pain are experienced in the same part of the brain.” Which explains why it can feel so all-encompassing to literally radiate pain from the darkness at the centre of myself, to the point where it can be felt by other intuitive people, but feel so ridiculous about it when there is no clear wrong thing to be blamed.

I may be veering off into talking about depression, here, but this is the thing. I suffer depression, I guess, in that I fit the criteria more often than not because of my thoughts and feelings about myself. But clinically... it's not purely chemical. It's this inherent wrongness that I've never been able to understand and accept about myself, which is actually not wrongness at all. It's just being different. Being hyper-sensitive.

Having “all of the feelings” (for some reason I imagine those words spoken by Tina Fey?!).

Clouds of grey sensitivity aside, the silver lining I see is that I've never felt like I quite fit. But I've always found some kindred spirits along the way. And I feel so much empathy for my kids, my amazing, fascinating, brilliant Autism spectrum kids, as a direct result of this sensitivity. I feel for them. All the time. And so I think it makes me a pretty good Autism mum. That, at least, is something good. And I can accept that.

Summer snaps and cute cousins

 

A little collection from the Summer school holidays, back in January. The kids have been having great play days this school holidays, too, and I wanted to make sure I put these up as they are so fun!

This last photo makes me feel especially happy :)

Autism these days

Seasons come and go, life rolls madly on, and as with most of us the days - in hindsight, at least - seem to fly by. I find it bizarre that Winter begins in just a couple of days, partly because we've had perfect Autumn weather this week so far, and that we're approaching the mid-point of the year already. For us, of course, everyday life means all the normal family stuff, plus some parts of each day that come to us courtesy of autism.

Actually, speaking of autism, Sevenly.org had an Autism week a month or so ago and I bought a few pieces of clothing, I actually really love them - so comfy :) I bought this sweater thingy and the black tshirt below, plus the men's tshirt for Ben. They had loads of designs to choose from, and I really like mine, a couple of pieces of clothing that I love the style of where I also am really happy about the message.

This week has been a lot about Ash. On Monday morning, everyone was ready to get in the car (on time, amazingly enough!) and I was chasing Sienna out the door when I realised that Ash was actually not in the car as I had thought. Sienna and I spent 20 minutes looking for him, inside checking each room three times at least, and outside. Then I took Sienna to school, in case he was walking for some reason, and got her to leave a message with the school office to call me if Ash showed up. Once home again (we live only about a 1 minute drive from school) I checked the house once more before walking up the road, but while up past the neighbour's house I saw that he was standing at our front door at home. *phew* It turns out he is just really good at hiding.

He didn't want to go to school, but is having trouble specifying any particular reason. Yesterday afternoon he didn't want to go to his drama class, which he'd previously enjoyed, as well. I think he's just finding things hard in general, and even though he is liked, and not bullied, he doesn't feel engaged with the kids around him. His aide was off sick for a couple of weeks, but she is back this week, so that could help. I have a PSG (once a term meeting) with his teacher and aide today, which was already scheduled. We'll plod along and see what we can do.

Weekend Inspiration for Glitz Designs, Aussie Scrap Source blog - click here for close ups!

Ash is tricky, because he seems completely fine, until he is completely not at all fine. He is very loving, or very angry. He turns on himself very quickly when he's made a mistake or been 'told off', however mildly. He often doesn't want to go to school, but gets dressed on autopilot and runs into the school grounds without another thought.

I am always focusing on dealing with each moment, each meltdown, drama or tears (between the three of the kids they are pretty regular, lol) and moving on afterwards - not dwelling - that I am entirely capable of forgetting some huge explosion that happened yesterday. Since eruptions of emotion are common, we just get through them and move on. So now I find that I need to be careful not to forget, though that is a pretty good survival technique, so that I can reflect and recognise when patterns are beginning to develop. Warning signs that something needs a bit more attention.

Anyway, Ash is making it pretty clear that he needs some extra support at the moment. We're having lots of cuddles, and I've promised to pick up some craft / science experiment ingredients for him today. As much as technology - video games and such - are great switching off / relief time for him, they also bring out the worst in him. So when he says he wants to make something from one of his make and do books (Usborne books, love them!) I am enthusiastic :) We just need a few extra supplies, lots of patience, regular hugs. And a 'pink milk' now and then can't hurt!

Ahoy, Captain!

Meet Captain. He is now 11.5 weeks old, and joined our family at 10 weeks. His dad is a beagle, his mum half beagle and half cavalier. Other than the usual puppy pooping, chewing, peeing routine - which is to be expected, of course - he has been pretty easy-going and absorbed into our family fairly well.

danielleQ to ‘I Wish I Didn’t Have Aspergers: #AutismPositivity2012

I stumbled upon this blog project that's happening today called "Autism Positivity Day". It came about, as the website says "A couple of weeks ago, someone somewhere googled “I Wish I Didn’t Have Aspergers”.  The phrase popped up in a blogging dashboard and struck the blogger as being particularly sad.  She wished she could have answered.

We don’t know who it was.  We don’t know where he/she lives.  We have no idea if he/she found what he/she was looking for in that search."

As a result, "We are asking every blogger in the autism community to write a message of positivity to #IWishIDidntHaveAspergers.  So that next time that individual (or another) types that sad statement into Google, he or she will find what they need – support, wisdom, and messages of hope from those who understand."

Well, hi. I am a blogger. And I am part of the autism community I suppose, though I don't know if I think of it like that. I am just me, we are just we. Let's start with an introduction.

My name is Danielle. My blog is about all sorts of things, creative things mostly, photography and scrapbooking, food sometimes, family sometimes. Of my three kids, my daughter Sienna, the eldest child at 8 1/2 years old, has Aspergers. Ash, my 6 year old son, has high-functioning autism (the main difference in diagnosis is that Ash has had receptive and expressive language issues from an early age as well as the pragmatics and other elements). My husband, who is 35, also has Aspergers, diagnosed after the kids as a result of reading about Aspergers and recognising himself in the descriptions. Our 2 year old, Cedar, has a developmental paediatrician keeping an eye on him. We are an interesting family, for sure, we have a lot of love, and we have a lot of things to be grateful for.

I don't know who you are, and I don't know why you wish you didn't have Aspergers. It's such a sad thought, and though it may seem to be so logical to you, please don't wish yourself away. While not the sum of your parts, Aspergers is a part of who you are and comes with a beautiful flip side to the challenges you are feeling. I don't personally have Aspergers, I can not claim to share your experience, but I can tell you what I know to be true.

My daughter is so adorable. She is quirky, passionate, creative and fascinating. She looks at things in such interesting ways and is intrigued by details that others don't even notice, or possibilities that never occur to the people around her. I sometimes watch her and see, behind those beautiful eyes is a brain working overtime, seeing so much, absorbing so many nuances of light and sound and colour. She is a work of art. Every day she experiences fear and anxiety, and every day she feels love, excitement and joy. There is at least a moment of everything, and I admire her every day for the way she just keeps on being her amazing self, she is just so much of herself regardless of the perspectives of others or the words of those who don't understand. I feel her pain and sorrow, I experience her warmth and I embrace her enthusiasm. She loves me so much, and I am blessed to know her deeply every single day. She is an incredible girl and she has Aspergers.


When I was a super-emotional and sporadically depressed teenager, I often thought about the depth and intensity with which I experienced things. The black is so black, emotional pain echoes with physical force. When it hurts, instinct tells us to wish the pain away. But knowing that the flip side of that deep experience of life is infinitely valuable, and a kind of balancing force to the difficult side - to see beauty in unique ways, to experience positive emotions with equal intensity, has always been worth it. I would not sacrifice that which makes me who I am, with all the beauty and pain, to be less of myself, for the sake of less intensity of being, because I wouldn't know how to be that person. I don't know how to want that. No one who loves you would want that of you either.

Sometimes it feels natural to wish it away, the core of who you are, to want it to go, and that is the pain speaking, I know. But you have the power to remember, to recall and re-focus. Remind yourself. You are amazing. You have gifts and spirit and a unique view that is irreplaceable. Aspergers gives you strengths and individuality which are awesome possessions. You possess them. Your strengths and interests, they are yours. And they are part of how fabulous you are. Even when you don't feel it to be true, reach out to those who love you and be reminded.

Ash, my middle child, is so fantastic. Along with his bewilderment at much of what goes on in the world comes infectious enthusiasm and eagerness to embrace the people he comes across, in all their variety. He shares his love of pirates with all he meets, and was saying to me just today "I don't know why I like pirates but I just love them so much" while we discussed the relative merits of treasure maps, ships and swords. He has a smile to light up the day, and experiences the ups and downs of his emotions with dramatic intensity. So many days are the "best day ever" for some small detail he has such appreciation for, even if it disappears minutes later. He embraces things that other people would barely notice, or just shrug off. Where other boys are embarrassed to display themselves so honestly, Ash is abundant in personality and quirky uniqueness, jumping out of his skin to just be himself, regardless of what anyone else might think. To worry about that just never occurs to him. The negatives of his autism are vastly outweighed by the power of what a fantastic person he is. He works so hard, and feels so much, everyday. I am blessed to receive his adoration and beautiful warmth in each day that I know him. He is amazing. And he has autism.

While a positive message, this is not a rose-coloured glasses post. Life is full-on for these kids. They spend their days trying to decode the world around them, and sometimes this doesn't work so well. Things get broken, others don't understand, they don't understand and their hearts are damaged piece by tiny piece when people say hurtful things. They take people at face value, they take words spoken very literally, and are not always rewarded for their open trust. They worry, they fear, they cry. But they always win. They remain passionately, intensely themselves and they remain incredibly loved and supported by their dad and I. We wouldn't want anybody to change who they are inside. Because they are brilliant human beings.

I don't exactly remember meeting my husband, as we were on the fringes of one another's radar growing up. I remember getting to know him on the Wednesday bus home from school, when he would also be on the bus on his day off from work. He would be returning home from Adelaide, where he would have bought at least one new drum and bass cd. He spoke passionately about his music, and shared his love of beats with me. He would comment on the Shakespeare plays I'd be reading for my English studies. We would talk a little and then a little bit more, and then we wouldn't stop talking. At other times, too, and so it grew. I always found him interesting, and loved that he was different from other people, just as I felt I was, though in different ways. Now we've been married for 13 years.

Ben is incredibly intelligent, and technology is his area of expertise and passion. Just as he counted the beats per minute of every song while making mixtapes when we were young, he pays attention to each technological detail around us. We laugh at some of his quirks, his 'Sheldon chair' and microwave rotation calculation, just as we laugh at the paint in my hair and, well, pretty much whatever. He has travelled, learned new things, adapted to new jobs and gotten to know new people again and again. In parenting, he observes and embraces and considers how best to support these amazing people we are caring for. And he loves me so much, so much that even after all these years I feel self-conscious about inspiring his devotion. But I don't doubt it.

Aspergers? Yes, it's there. It's here. It's part of our home. Regardless of autism, or because of it, I don't know. But I do know three things: I am never bored. We have love. And I am grateful.

Ahoy! Pirate Festival

Yesterday we headed out to Grantville, on the way to Philip Island (and just over an hour from here) for their annual Pirate Festival. They have a pirate-themed mini golf all year around and a native animal park. For the day, they had all sorts of activities and games, not to mention lots of people dressed up all pirate-like!

Sienna won the 'Best Dressed Pirate Wench' trophy for the 6-9 year age group. She did look very cute and pretty, and it probably didn't hurt that she was the smallest in the category ;) She also got to go on stage later on to help hold the big snake they had on display.

This was a rather more gross version of Bobbin for apples, with actual pieces of raw squid skewered into the apples! Motivated by a chocolate gold coin reward, both Sienna and Ash grabbed an apple with their teeth.

The face painting was a little bit challenging. First Ash just found it really difficult to communicate what he wanted, a simple design he'd chosen out of the example book, and I had to tell that face painting artist that he had autism just so she would stop talking for a minute and let Ash focus, lol. I don't often feel the need to mention autism to strangers, but apparently face painting is a bit fraught with emotion and communication difficulties! Ash was happy about it, he just needed a moment of reassurance to put the words together.

Sienna went to the other face-painter and asked for the dragon face, it was a design she had also chosen out of the example book. What we didn't realise is that this second face painter didn't paint from the example book, and her idea of a dragon face was quite different from the example. She was a talented painter, but added some sort of horns and fangs, as well as covering Sienna's entire face instead of just around the eyes. When she showed Sienna in the mirror, Sienna got really upset, so I left Ash to finish up on his own and went to see what was happening. Again, I had to say that Sienna has aspergers just to get the lady to stop talking for a minute, the painter kept saying that she didn't know there was a book, all painters are different and that most kids realise that all painters are different, that kids should know that. Um, ok, so it was a little like reassuring two children, really, since the painter was all offended. It was a misunderstanding, I explained that Sienna was expecting the picture she'd seen, we had no way of knowing that the book we were handed was only for one of the painters (or, for that matter, which painter). I explained to Sienna that the lady didn't realise, that the colours looked fabulous, but pulled her away repeating that we have baby wipes and that I will fix it for her, which understandably didn't impress the painter. Phew! Anyway, I wiped off the fangs and horns areas, and limited the green dragon paint to around the eyes like a mask, convinced Sienna that she looked like a beautiful lizard and we moved on to the animal park area with everyone in a good mood.

Cedar loved the kangaroos, it was so funny. He just kept running around saying "big rabbits!" and peering into their faces. He has seen kangaroos before but not up close and tame like these. The kids all had fun feeding them. We also checked out the koalas, dingos, wombats, tasmanian devils, peacocks and some other birds, an alpaca, a goat and a donkey. It was a nice relaxed end to a busy day.