Challenging

I almost lost a child under a semi trailer travelling 70km/h today. I turned to open the car door and he took off. He stopped a metre from the end of the rather long driveway, and about 2m from the path of the oncoming truck.

Life is challenging at the moment.

Today was my fourth full day out in a row. I took four loads of washing to my Mum’s house on my way out because there is just no way I can catch up this week. I still did three loads of washing here today. If the remainder of the day goes well, I might make it four.

Home-schooling has been erratic of late due to recurrent migraines and an unusually long run of out of the ordinary appointments. And sheer exhaustion at times.

Josiah, our fourth has some sort of epilepsy/seizure disorder (not currently specified as there is a chance he could grow out of his seizures) and global developmental delay. We’ve known that for years. What had slipped past us (while focusing on a new baby, dad’s death, return to home education, two family engagements, a family wedding, extended family serious health issues, mum’s broken foot, appointments, therapies and just general life in a larger than average family in a smaller than average house… Is that Josiah was falling further behind.

When a child has a disability or delay, I think you tend to notice all those little gains so much more. He has continued to learn new things, learn new words… We just lost sight of the fact he was falling further behind. A recent speech therapy and occupational therapy assessment made that clear.

Earlier this month we had a scheduled six month check up with his paediatrician. I was ready to fight to say that we need to investigate this further. To tell him that it was surely a more complex diagnosis than just seizure disorder causing developmental delay as he’s been seizure free in over a year and is still losing ground.

Thankfully I didn’t need to fight. I was well prepared with the aforementioned reports as well as a summary (six pages long!) I had written myself. And I’d decided not to bring a mini-screen with me to keep Josiah occupied, instead bringing a variety of small toys, some paper and pencils and the like… Which meant that once we got to the paediatrician’s room Josiah was not preoccupied with a screen but was… His usual self. Squealing, jumping, throwing the odd toy, being uncooperative with getting measurements done… I think it helped the paediatrician to trust me all the more about his behaviours and current issues.

So, the paediatrician was happy to refer me to the service I requested where they do a comprehensive developmental assessment with a multidisciplinary team. It’s a long waiting list (could be this time next year before we have answers) but there isn’t an equivalent private service even if we could afford to pay for it.

Then there was the bomb. The paediatrician said that Josiah has “many autistic features” and is also referring him to the same team for an autism spectrum assessment.

We were obviously not unaware of Josiah’s delay or his behavioural challenges. But in the space of a few weeks our understanding of his “diagnosis” went from delay caused by seizures, but he would likely catch up to a bigger delay than we thought and so more challenges to a likely diagnosis of autism, which is not something that is just going to go away.

It’s been a lot to take in. Especially with some health challenges I’ve been facing this month, the anniversary of my dad’s death and a really hectic schedule.

I’m not myself at the moment. I’m finding fairly routine tasks like writing a menu and corresponding shopping list then actually ordering the shopping overwhelming. I seem to get ahead on one task, only to discover I’m behind on another and then turn around to discover the first task (I was on top of) is now piling up again.

The paediatrician has assured us that regardless of the diagnosis, we are doing all the right things. Josiah is getting the therapies he needs. He is attending a supported play group that is staffed by five early childhood trained staff, an occupational therapist and a speech therapist (once a fortnight). We read to him, sing to him, play with him and involve him in every day life. We are doing everything we can. A firm diagnosis will hopefully open up doors to accessing other services and government funding for therapies.

Challenging. That really describes this whole month. Challenging. Overwhelming. Exhausting.

Challenging. That describes what the coming weeks, months and years are going to be like.

Challenging.

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