Mark Dray Author

This is a picture of 2 hours out of my weekend. Usually on a Sunday when we have a support worker who keeps an eye on Henry.

4 blended meals a day for 6 days.

Let’s roll the tape back to January 2024. We’d been trying Henry on CBD to control his seizures. I think it was medication number 13 or 14 in our attempt and a massive pain in the arse to get through the system, but we finally got there in December 2023. We’d been building the dosage to see if he got some relief, but like a lot of the meds we try him on, this one was making him sleepy and he had a loss of appetite.

Now, before this, Henry was a pretty good eater. Well he was once we worked out a couple of years earlier that a gluten free diet would help him. Did we get him tested? Na, we initally just started stuffing him with gluten free food and the grimacing and crying which would follow each and every meal stopped immediately.

Anyway, dinner usually was

• 2 sausages

• half a tomato

• a cheek of a capsicum

• a couple of slices of cheese

A full plate of full for a 9-year-old, and his breakfast, lunch and afternoon tea were all as hearty as that as well.

But in February 2024, he started refusing to eat anything, and we put it down to the CBD. Being a skinny kid, we’re constantly fighting to put weight on him.

He eventually got to where each day he would only eat two slices of cheese for each meal of the day (along with Maccas chips).

Being nonverbal, it’s not only impossible to reason with him but also to work out what the bloody hell is going on. Unwell? Meds? Teeth? Gut? A million different things!

We took the step to stop the CBD. It wasn’t doing anything positive, so it wasn’t like his seizures were going to increase.

Once we stopped the CBD, his appetite returned to pretty much full meals. This lasted for a week or two before you reverted to only eating his cheese slices.

With a lot of things with Henry, we had to decide on what we were going to do.

Fortunately, he had his PEG (percutaneous endoscopic gastrostomy tube) put in for medication, but I was big enough to use for meals as well.

So we hit social media and Google and worked out what we needed to do to blend yours up to put through his PEG. There was some trial and error, especially when you’re considering different macros, and we persisted by ourselves for a week or two. It became pretty clear though that we needed a little more help, so we reached out to a dietitian that specialised in kids that are PEG fed (https://www.cubspaediatricdietetics.au/).

Henry was still at the height of his bouncing stimming, and while we got the obligatory (no fault of the dietician at all)

“Yep, lots of kids his age are active”

I couldn’t emphasise enough how busy he was. So, prior to his review, we got him a kiddie Garmin. Some days he would bounce on his mattress until he was red in the face. Support workers would try to bounce along with him and tap out before he was even close to being done.

lol, she soon realised what she was dealing with and why he wasn’t putting any weight on.

So, with her direction, we started him on a blended diet. 2100 calories a day across 4 meals.

I’m no rocket surgeon, but I remember Captain Skywalker saying

“For every action, there is an unexpected consequence of that action which will mean you need to take your kid through more blood tests, ultrasounds, stool samples because they are now shitting out the eye of a needle because they are on a liquid diet and you need to make sure that it’s not caused by something else underlying.”

From the okayest dad perspective

While I can tell the story of where we got to, part of the reason I’m doing this blog is to share thoughts from a dad’s perspective so I’m going to add in a section (maybe I’ll keep it as ‘From the okayest dad perspective’ but that might change).

Anyway, I’m sure every parent can relate that raising kids is never linear, but a kid with special needs throws a whole other layer on top of layer, on top of layer to parenting.

Every single decision, medication, consultation is spoken about, dissected, googled.

And before you come at me about the below ‘parenting’ image and how simplified it is, with your ‘Oh, parenting is harder than that’ or ‘yeah but my kid..’ I get it there’s a million different scenarios and situations that complicate that ‘Parenting’ image.

But tell me, do you analyze every single little micro-expression and movement your kid makes? Do they purse their lips in a new way that you haven’t seen before, and you wonder if it’s a new seizure presentation or are they just working out that their lips can move that way now? How about when they grab at their ears? Is it pain? Is it ringing? Is it too noisy? Are they overstimulated? Or is it as benign and mundane as that they have just found the dangly things off the sides of their head interesting?

Then imagine the special needs parenting is wrapped in a giant bubble of self-doubt with opinions and advice being shared with you by family, friends, friends, the NDIS, the school, therapists and doctors.

We fought against getting a PEG inserted for so long because of the thought of surgery we wrestled with, but in the end it was a lifesaver for administering his medications and then doubly so when he stopped eating.

I’ll leave you with a fun fact (from Google AI anyway).