“Don’t worry Anna - all kids catch up eventually - you know by the time they finish school they’re all the same”
A well meaning comment I received five years ago, after I told a friend about Jacksons' ASD diagnosis.
Looking back I see now that she was deeply uncomfortable with what I'd just told her (understandable) and trying to ‘solve’ the situation - for her own peace of mind if not mine.
I also see now what I didn’t know then. That the ability for her to sit with me in my discomfort would have been extremely healing and validating.
I look back at comments I have made in the past and see the same fear and unease in my responses.
A friend of mine whose child had just been diagnosed in utero with achondroplasia four years ago. While I ‘comforted’ her by saying ‘well at least you know he will still make friends and learn to speak and have the opportunity for a career and marriage and kids….’
Last week I visited my in-laws’ home and almost started crying at the sight of one square metre of paving stones.
It was unexpected and beautiful and provoked such an emotional response from me. Because two weeks ago in this spot lay a garden bed filled with pretty pebbles.
Pebbles that my seven-year-old Jackson spent Christmas Day attempting to pop into his mouth.
For a sensory seeking kiddo, a visit to someone else’s home is always an exciting chance for exploration but not always a safe environment.
So, the following week my father-in-law quietly removed the pebbles and paved the garden bed. And the next time we visited, I didn’t need to keep a hawk eye on Jackson and the pebble situation.
This was in addition to the sturdy gate my father-in-law installed down the rear of their garden last month so that Jackson could no longer access the steep concrete steps and garage full of very interesting (and sharp) equipment.
How strange to find myself at this...
Today I was thinking about how life could have been… if I’d never been your mother. A mother to a child with autism.
When pushing through the daily challenges that present for a child on the spectrum, the default position is to dwell on the hard stuff.
I get hurt sometimes. Physically. Mentally. Emotionally.
While none of it is intentional, it sucks to be bitten or kicked by my kid.
While none of it is intentional, it sucks that some of my mum friends live completely unrelatable lives.
While none of it is intentional, it sucks that my little boy cannot say he loves me. Cannot call me “mum”. Cannot say his own name.
And while I have certainly spent some time in that default position. Victim. Overwhelm. Exhaustion. Without having been dragged unwillingly and unwittingly through what can only be described as life’s greatest wake-up call, I can only find gratitude in my heart for all of it.
Is it what I expected from motherhood? Nope.
Is it what I planned?...
Lets start with a big concept. I’m putting it out there…. Your child has been diagnosed with autism. But they might not actually have autism. Or they may have a second condition compounding their autism.
You might immediately think this doesn’t apply to your child. But I encourage you to read on anyway. Humour me!
It might sound deluded at first if this concept is new to you, but the more I learn about the medical conditions that present alongside autism the more I believe there is a crisis of misdiagnosis around the world. I believe there is a large subset of children being diagnosed with ASD who in fact have behaviours and developmental delays stemming from medical or physiological conditions and the terrible thing about this is that it is holding back our children! Its holding them back from correct diagnoses. Its holding back changes we can make to improve their symptoms and make their life easier and more enjoyable.
When a child is diagnosed with autism, it...
‘I’ve tried EVERTYHING… but my child doesn’t sleep’
I read and hear this statement constantly.
And I’m often tempted to dive deep into that conversation, because there are many who do believe that removing gluten for three days and trying some essential oils with block out curtains = ‘trying everything’ and #sorrynotsorry but I seriously disagree.
Let me give you an illustration. I read a long time ago an article about breastfeeding. The crux of it was that mothers were deciding that breastfeeding was ‘too hard’ or ‘too tiring’ or ‘too restrictive’ and deciding to stop. Unfortunately, many of these mothers then spend the next few weeks telling everyone that they stopped breastfeeding because they ‘didn’t have enough milk’.
Now this post has nothing to do with breastfeeding so let’s not go down that rabbit hole….
The point I want to make is this: WORDS MATTER. If...
When it comes to the NDIS knowledge is power – the more you have, the better your chances of getting a plan you are happy with.
While reports and quotes are good - the amount of funding your child gets will be dependent on your planning meeting and how you describe the impact on their daily functioning & all the needs they have across all areas of their development.
Before you roll onto NDIS
Make sure you have used all your HCWA Funding – once you accept your first NDIS plan – you can kiss what’s remaining of your HCWA funding goodbye!
If you haven’t yet used your ‘Helping Children with Autism Plan*’ this must be used prior to moving onto the NDIS as this is under the HCWA Funding.
*(The Helping Children with Autism Plan is a referral written by a paediatrician or psychiatrist - often referred to as Item 135. This plan is provided for families of children under 13 years of age with a diagnosis of Pervasive Developmental Disorder...
Health doesn’t come in a bottle or a pill or an injection. Health comes from taking 100% responsibility and committed daily action towards looking after your mind, body and spirit.
I have been paying attention. And when I look around, I see a lot of sick people. And I see humans who want instant gratification. We want the fast track. The easiest and quickest method of managing anything especially if it means we won’t need to change our habits or behaviours.
We want to pop a pill to calm our anxiety instead of committing to mindfulness and healing and truly understanding where our trauma comes from.
We want to eat foods that damage our immune system and then get a ‘free’ vaccine for measles hoping we won’t get sick. We want to drink alcohol at night and drink a Red Bull the following morning to deal with the repercussions.
We ‘don’t have time’ to cook from scratch in our homes or grow our own food because work is more important....
I brought my young son to you for help and answers. We were not seeking a diagnosis although that is what resulted.
When you asked me how I felt about my sons ASD diagnosis – my answer was that it was ‘shit’ and you agreed.
We are raised to believe that doctors know things. That they are highly educated and extensively experienced and far more knowledgeable about medical and physiological matters than we humble parents.
A doctors “bedside manner” is often the difference between a mother leaving an appointment with despair and grief, or a mother leaving an appointment with a new perspective on life and the future of her family.
Dear Doctor, I cannot convey to you how crucial this state of mind is for a parent.
You told me that my younger son would break my heart because I would see all I missed out on with my eldest son. But you were wrong.
Autism means that we will never take for granted the tiny ‘mundane’...