No, it’s not our dirty little secret, but we also don’t choose to shout it from the rooftops…
What am I on about?
Today I’d like to share a little about my family, we like many families have a child on the Autism spectrum, not many people know, we haven’t hidden the fact, but I also haven’t spoken about it much – so here goes.
Before I get started I want to say, this is our journey and our experience, I acknowledge that this is a sensitive subject for many & I respect that your journey may be very different to ours – I look forward to always learning more and gaining insight from other people’s experiences around me.
So here is our story…We have two beautiful girls, our eldest who will be 10 later this year is on the spectrum…. was this a surprise to me? No, I had an inkling for a very long time, is it a surprise to others, yes, often. Kacey is what they describe as “high functioning” so our experience of autism is very different to many other families, but all have their challenges.
After a somewhat normal pregnancy, our little Miss decided that she wanted to arrive 7 weeks early… this was quite traumatic, both the birth & the hospital stay, however that’s a story for another time… she is NOT autistic due to being premature… (yes I have been asked that) Even though she was premi, we were extremely lucky, our little Miss is a tough nut, super healthy & resilient we had very few complications due to her early arrival, she was just so very tiny- my husband said it was because I really love little things – his way of trying to cheer me up one day – cute.
So I said I’ve always had an inkling, how? – well, when we found out we were having a girl, I was in the bookstore combing through the pregnancy books when I came across one called “it’s a girl” I don’t have it anymore and I don’t remember the author, but it was a great book that talked about the brain and the main neurological differences between male and female & what to expect with these differences. One of the things that stuck with me was that baby girls tend to fixate on faces, where as baby boys will fixate on shapes (like mobiles) so when my lil poppet never seamed to look at my face, I became quite concerned. (I silently suspected she was autistic, but never shared this with anyone as I was so fearful.)
It was early December (she was only 3 months old) when I visited our paediatrician (a beautiful older lady who said she just refused to retire – I really loved her!) I voiced my concerns about Kacey not looking at me, she spent what felt like forever examining her, walking her around the room, under lights, near windows and lots of other odd things, she ordered blood tests (now that was traumatic!) and we also went off to see our ophthalmologist… so just before Christmas we were told it was her eyesight – so long sighted she was almost legally blind – good news though – a growth spurt reduced this to just needing minor coke bottle glasses! All jokes a side, any mother will tell you how tough it is to be told there is something “wrong” with your child, I shed a tear or two in the car after our first appointment – it was a scary wait to see if her growth would improve her vision, luckily it did. (And no, being premature did not cause her poor eyesight, her great grandfather was also long sighted) – it continues to improve as she grows.
On my return to the paediatrician she let out a sigh of relief – ‘well that’s good I was thinking much worse than glasses…’. she confess she too had suspected Kacey might be autistic, but said it’s not diagnosed at such a young age. So the focus became her eyes and I put aside my worries for a while.
As time went on there were more and more quirks to deal with, most of the time I could get creative and come up with strategies to help her and us get through what sometimes should have been simple tasks… Some were tougher than others and once her sister came along & was getting older it became more obvious to us the some of our “norms” weren’t so “normal”.
Emotions; processing and understanding emotions like empathy were tough & once the full swing of school kicked in we were faced with many more challenges. By pre-primary I was pretty sure Kacey was on the spectrum, but most of the time we were dealing with it well enough for the outside world to not be overly concerned. As a family at this point we decided not to go through testing as we didn’t want her labeled & we didn’t have an understanding of what that would mean for her – so we just kept doing our best.
Well by mid way through year 2 I was at my wits end & after being in tears ? in the deputies office again, we decided it might be time to investigate more thoroughly. Now at this point I will say, don’t ask for my advice on the correct process to go through a diagnosis – I did it all wrong! Being a total rebel, I just instinctively don’t follow the “normal” procedure so therefore government systems don’t like me, (due to the order we did our testing I was unable to claim rebates and was out of pocket a lot of money…. but on the plus side, I got all the appointments done in record time!) so yes, she ticked enough boxes to go through the process – get a label and give me headaches that come with dealing with various departments and procedures.
So why did we change our minds? Well school – I don’t think the system in general suits many kids – it especially doesn’t cater overly well for autistic kids – she required the label in order to get the extra little bit of help she needed. The following year was amazing, with some aid time to help her in the areas she was struggling, she flourished! As much as I advocated for her – without that label it fell on deaf ears – so why not make the system work in your favor. (It’s got to at some point right?)
It was tough to have your child given a label & talked about in such a clinical manner, but I think I was ready – I didn’t cry this time, I figured it didn’t change our amazing little girl in any way, but it might help me with the tools I need to help her. I love how she looks at the world just a bit differently to everyone else, I love that yesterday for dress up as “what you want to be when you grow up”, she decided to go as herself! We are open and honest with her, I don’t ever want her to use her label as an excuse or to get something she wants – she still needs to learn how to function in this world – it won’t bend to her specific needs.
Something that was a blessing when going through the process was that one of the therapists commended me on some of the things I had implemented, saying that because of this I had helped Kacey develop such strong coping mechanisms – it was such a relief to hear I had done something right – as parents we are constantly guilted by everything we do “wrong”!
So there you have it – what followed was me having lots of frustrating conversations with various departments to develop a “plan” for assistance… to be honest I had no idea what they were going to help us with (& I told them so…) it took a year before any of the “therapies” started, but now she enjoys the visits from the physio, speechy & OT… I’m sure it will help her in ways I can’t.
Along our journey I implemented LOTS of natural therapies and practices into our lives and these have been so so important & helpful along the way. I still continue to let her explore all sorts of experiences. I highly recommend other families do the same – I have been to one autism seminar and I hated it! The lack of creative thinking was so frustrating – YES a healthy diet makes a difference – to everyone not just someone with autism!!! NO – nothing will ‘cure’ or ‘fix’ your child – they aren’t broken, they are just different. The facilitators were so stuck in their rigid clinical way of thinking, they really couldn’t offer people suggestions outside of the standard therapies. I feel that both are so important & finding things that work for you can be such a blessing. Some of the things Kacey loves and we have found helpful are, our chiropractor (he’s 1 in a million!), Neurolink, essential oils (big help!), quality supplementation, music, yoga, evening meditation CDs, crystals, girl guides, pets, routine, swimming and so much more I can’t think of right now. To keep us functioning I believe the most important things are; a clean wholefood gluten free diet as much as possible, hydration (so critical!) reminding her to drink water is a daily battle, quality & quantity of sleep and essential oils to support emotional regulation. When we don’t have these and the routine is off – all hell breaks loose, it’s not good for any of us.
We will continue to navigate life our way – like I said to one of our co-ordinators, to me I want to do my best to equip Kacey with the skills she needs to live her best life, weather being autistic or having a physical disability, it’s never an excuse, we expect her to do her best & use her skills or ask for help when needed, our aim is to fully equip her with the skills she needs for the life she chooses – but I refuse to let her see autism as a handicap – if anything it’s her gift – to learn all the lessons it will bring her & us as her family. I refuse to helicopter parent, she needs to learn how to be an independent functional human being without her mum by her side 24/7. Sometimes this feels harsh, but at the end of the day, I know it will serve her well, her character is blossoming along with her independence as she gets older.
Recently as parents we had an extremely proud moment, Kacey is a member of our local swimming club, not because she is an amazing swimmer, because we thought it would be a sport she could enjoy as its an individual sport where you are still a part of a team. For her, competition is really only with herself, the concept of racing really isn’t her jam, but she has been very dedicated to focusing on improving the technique of her strokes. At the end of the summer season, she competed with her team mates in the club championships and its such a blessing to see them all cheer her on once they have finished and she is still swimming. I was moved to tears when the coach awarded her with the encouragement award. Her reasons for choosing Kacey were what made us proud, she has shown such good character – perseverance, dedication, good sportsmanship, manners, respect and good behaviour – what more could a parent ask for? Moments like these give you a glimpse of hope that you are doing a good job as a parent – I’m grateful she can be part of such a supportive community and accepted for who she is, not her label as its not even common knowledge.
To all the families out there with beautiful spectrum children – I take my hat off to you, it’s not the smooth road, but I encourage you all to stay strong & add some creativity into the way you deal with the challenges it brings.
Alicen xx
PS, if you want to know more about the essential oils and supplements we have found helpful, please reach out.