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.

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.