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.

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.

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 :)

There's always room for a story

Last year I came across a new Pozible project which just sounded so delightful to me! Since then Story Box Library has launched, and continued to grow into a gorgeous website and resource.

Basically you have videos of a variety of children's books being read out loud. Fantastic illustrations, little animated intros and some great personalities reading the stories are some of the ingredients which make this such an awesome website.


During the school holidays, I played a few stories to the six kids I had for the day (my 3, plus two nephews and my niece). With ages varying from 4 to 10, they were all enthralled and happily entertained, all wanting to choose a story. We all enjoyed the sweet Today we have no plans and then A really super hero had them giggling.

I think my current favourite would have to be Herman and Rosie, but I haven't actually watched every story yet :) Some of the readers include the divine Clare Bowditch, Andy Griffiths, Missy Higgins and Nick Cave.

Since attending the Big Hearted Business (un) Conference last year, the brainchild of Clare Bowditch, I met Nicole Brownlee, one of the clever and creative peeps behind Story Box Library. She is just so lovely that I wanted to help spread the word :) Plus, I'm totally on board with anything that brings imagination and storytelling to our kids!

The year of the Captain

2013 will be, for us, the year of the dog, or the beagle perhaps. More precisely, the year of the Captain.

Those who know me on social media will have seen the news of Captain's death last week. I just wanted to include it in this space, where I celebrated his introduction to our family in January, as well as how great it was having him as part of our crew. He often featured in my Instagram feed, as well as in my APPA award winning portrait of Ash as a pirate.

At 11 months old, just over 9 months since we got him, and while Ben and I were on our first weekend away without kids (since having kids), Captain got out of the yard on Monday morning of last week, and was hit by a car at the end of our road. He died instantly (as far as we can tell).
 
The 4WD who killed him didn't stop, but the person behind them did, and kindly tried to find his owner. A neighbour not far up the road and the witness of the accident together came to our door, where my poor sister answered it to such tragic news. They carried him up to our house, and I later asked a dear friend to pick him up and take his body to the vet for us.

There is a lot of frustration about how he got out - it's a long story, but the damaged fence wasn't our fault - but the truth is that he always was an escape artist of the highest order, as beagles tend to be. He was strong, and very fast, determined, curious and super excited pretty much all of the time. I had just the week before bought a second, different dog harness to try and improve our dog-walking training! He ate anything and everything, and looked super cute curled up in his little kitchen nook, snoring away.

I miss him. We all do. It's really weird being able to leave gates open, or food on the kitchen table unattended. I guess that will all become normal again. Until next time. But, of course, and as Sienna has been saying as she asks when she can get another dog -

"Nothing will replace Captain!"

The pirate Captain

LOL I love that movie. It is [almost] totally unrelated to this post, however :)

Every now and then the person we bought Captain from back in January very nicely asks for a recent picture of Captain, and today it was a particularly good reminder to snap some new photos. Cue five minutes on the side of the road when we were walking home from school this afternoon! 

This is one reason I totally love my Fuji X100. A compact camera to carry around (as opposed to the big DSLRs), wide angle lens, complete manual control over everything. For these shots I set it at 1/250 second and aperture of 4.0, leaving the rest to Lightroom. I had it on auto ISO, and it varied from 640 to 2400.

Captain has continued to be a total mischief lately, finding new and creative ways to escape the (almost 1/4 acre) back yard, including climbing and jumping. 5 foot high seems to be a sweet spot that he can't quite get over without some kind of ledge or foothold to help him along, lol. He will eat pretty much anything, so we are still reminding the kids every day to put their stuff up high or behind closed doors! A few weeks ago he rummaged in my bag and found a triple pack of ferrero rocher chocolates that I'd been given. He'd eaten a full one before I could stop him, and yes the gold wrapper went all the way through ;)

On Sundays we have a 'no-technology entertainment' rule, at least until late afternoon, and last Sunday we spent a few hours painting pickets and railing on Sunday for a new picket fence we will have across the front of our house. All the kids helped out. We're really looking forward to having it finished, plus a few extra bits of fencing, so that he will be able to get down into the yard from the verandah without needing us to take him. We're still time-sharing the very back part of the yard between Captain and the chooks, but will be building them their own corner within the next few months or so.

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!

Punchy pages and cute cousins

After a drought of words, I just wanted to share two recent scrapbook layouts - this photo of Alannah and Sienna is one of my favourite images lately. I've also made a mini album of photos from that little photo shoot, which I'll share in a few weeks or so :) Plus, here is a slideshow video I made of the session!

Each of these layouts was created for Aussie Scrap Source using different kind of punches, for a series that was on the blog last term. I've been enjoying a kind of whimsically watercolour-ish feel to my pages lately.

3 kids & I see Holly Throsby

On the weekend I took the kids to see Holly Throsby in the Famous Spiegeltent at the Arts Centre - I'm getting quite familiar with the place this month! I saw Zoe Keating in the Famous Spiegeltent there (by myself) a few weeks back, and last week saw Red Bull Flying Bach in Hamer Hall there as a sort of unconventional baby shower girls night out for a friend. Both awesome :) And in another week-ish I'll be seeing the Counting Crows also in Hamer Hall with my big sis!

Anyhow, I've had Holly's kids album See since it came out, as I've been a fan of her music for a long time and loved the quirky, catchy and cute kids songs when I heard a couple on myspace. So the kids are quite familiar with the songs and that was great, they got excited to recognise songs and bop along. That is Cedar with his orange blankie around his shoulders in the picture up there.
 

Even though we own the digital album, Sienna wanted her own copy and got it signed by three of the band members (Holly, Bree and Jens) but was disappointed that the viola player didn't come out to sign it as well, she had really liked him. Cedar was not cooperative about being in a photo, lol, which is fine, as Sienna was really the one who wanted to connect with the band :)

Lana and Sienna

Beautiful cousins, cute girls :) I took them out last weekend for a shopping afternoon, followed by a little photo session in a corner of Westfield Fountain Gate, hehe. Was fun, and very cute. I think I might make a little slideshow video of it for them!

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.

Little (Italian) Book Adventure

This month's challenge on The Little Book Adventure is to find new places to read. Since Sienna and I are away almost the entire month, since the 3rd til the 30th, it has been inevitable that we find new places to read along the way! To begin with, at the gate in Melbourne International airport waiting for our first flight, Sienna was reading The Little Prince.

She continued reading The Little Prince on the Paris metro and regional trains, but in Florence we found an English bookshop and she read more than one book sitting in this chair there... She ended up selected Olivia goes to Venice (which she just HAD to have, since we had come to Florence from Venice).

To read about a girl in Paris

I'm not really blogging from over here in Europe, but helping Sienna update her blog every few days. Check it out for some more pics :) After the first day Sienna wasn't as interested in photography, lol, so they are mostly mine after that first blog post about arriving.

And now, we're going out to explore Venice!

Isn't she lovely...

Does that post title totally get that song in your head? Mwa ha ha! OK I am overloaded with stuff to blog but haven't got photos sorted yet. So here I am sharing some photos from the workshop I ran in Adelaide back in Autumn! This is Marlie, a sweet friend. She is genuinely really lovely, and very gorgeous!

We had a busy busy and fun school holidays, with the older kids going back to school today. This is the first time Sienna has had to manage medication at school, so it will be interesting to see how that goes. She is on the 3rd week of a slow-increase to standard dose of ritalin, for her ADHD that was diagnosed a month or two ago. On top of Aspergers, the poor thing, but she is pretty great about it all, with time to process. The books All dogs have ADHD and All cats have Aspergers are both great tools that help kids get their head around it as well as being ok with it, seeing strengths as well as weaknesses.

Ash was NOT keen to go to school this morning, but in the end walked in to his class on his own. Sienna has plans to help him out at playtime if he is on his own, which is lovely.

And more stuff has been happening, bits and pieces, but I will simply attempt to blog more to get it all covered! I have said it out loud, so I am committed now! At least two more times within the week :)