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.

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.

Photo Booth fun

A month ago, we threw a big party for our 15th wedding anniversary. With a 1920s theme, it was a lot of fun and the biggest hit of the night was the photo booth we hired! The kids especially had a lot of fun :)

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!

Enderman, Creepers and Steve, Oh my! - Minecraft inspired bedroom project

A couple of months ago I was staying with my sister in the Adelaide Hills, and she challenged me to help her redecorate her 7 year old son's bedroom. Caden didn't spend much time in there, and was reluctant to sleep in his new loft bed. Cue operation Caden's bedroom!

The first step was choosing a special interest to engage Caden with the project, and make sure he would be excited about his very own room redesigned just for him. It wasn't hard to narrow it down to Minecraft for our main inspiration, and some of the block elements of the game suited soft furnishings and wall art perfectly.

I love a challenge, and a budget. Trusty IKEA was the main source of decorative elements and furniture, with a few Kmart bits and pieces added. I also created three custom canvases to tie the theme together clearly and add some colour to the walls. The fun bit about that was the kids joining in, and Caden created his own Minecraft canvas that was a bit smaller and sits on his desk.

Colour scheme: Green, red, white and black with a tiny touch of blue, grey and yellow.

Resources: IKEA, Kmart, Cheap as Chips

Existing furnishings: Black-brown loft bed with desk attachment, black storage unit under the window.

Challenges: A rental meant that painting wasn't an option. Flexible landlords meant that wall art and new window dressing was fine. Also, storage was important, but more space for toys than clothes, being a real boy's room. A light had to be clearly visible from the bed.

Budget: $700 including furniture. I think we went a tiny bit over, with the light bulbs and more expensive window option, but it was very close.

Style: My sister's home and decorating style is clean, uncluttered with simple, strong colours. She doesn't tend to collect or feature vintage / secondhand furniture.

The Ender Man lamp was super quick and easy to make. I bought a black square lamp and cube design acrylic lamp base, which already came together, for a total of $10 I think it was from Kmart. A couple of strips of white bias binding were cut and adhered with double sided tape. Finished!

The black shade means it isn't super bright, and can act as a night light to be left on while sleeping.

The storage shelves and boxes were all from IKEA. These are Pallra boxes with lids on a Molger shelving unit.

We chose red and white for the bed, to imitate the beds in minecraft houses. I bought a discounted queen size quilt cover from IKEA and cut it down to size. A fresh white pillowcase was from Kmart.

Some cheap scatter cushions were bought from both IKEA and Kmart, and I hand stitched some black bias binding fabric pieces on to one of the green cushions to make a 'Creeper' head cushion.

 
To keep the look clean and simple, but still echo the Minecraft inspiration, we chose these window panels as blinds. They are from IKEA, and have a grey square pattern on it to keep with the block theme. Other than the bed, the black storage drawers beneath the window were the only original furnishings kept in the room.

Two square rugs of 'grass' were bought from IKEA as well, also chosen to suit the Minecraft block inspiration, as grass blocks are an integral part of Minecraft world building. A green Trogan wardrobe from IKEA was added, as Caden needed some new clothes storage, and the various tones of green throughout the room kept things coordinated without being perfectly matching. The wardrobe accounted for almost half the entire budget.

A few canvases and some simple art supplies from Cheap as Chips gave me something to do for quite a few hours during Adelaide's record-breaking heatwave! The kids also completed some art work while I was at it. I made three block-based wall art pieces, simply by measuring 64 squares on each canvas and painting the blocks in different colours.

We have a cloud block above a touch of grass, a grass block with dirt and a Steve face canvas. I like how the block design is a contrast with the imperfect brush strokes and colour! If you are more of a perfectionist, it would actually be quicker and a cleaner look to create prints on the computer ;)

The final few touches were two Drona storage boxes (these things are cheap and surprisingly big!) to sit on top of the wardrobe, and a fun click together clock, all from IKEA.

A few months later and Caden still enjoys his room, and happily sleeps in his bed with the Enderman lamp on in the corner :) Mission accomplished!