This Would be a Very Boring Book

There are no big highs! There are no flashes of hope, no good news, no sudden surprises…There is no family gathering no to make the author ‘feel’ better. Instead, the one blood relative I told always forgets that I said anything was wrong. There’s no big church drive to help out…

There’s just..silence.

There’s no meticulous healing, no progress. It’s all just a hard, hard slog. There’s no sudden, “Oh!! I’m so excited! My children: have defied all odds and are…”

This is truly a very boring diary/journal of chronic illness of all sorts. Of ‘incurable’ neurodivergence. Of hard times.

Where are we?

My cousin (in law) in a different province sent a message asking if “we are winning” the infected finger battle. Not yet, I’ve now done two full rounds of antibiotic and all I have to show for it is an invisibly sore tummy, a lack of good bacteria in my gut, and less money in the bank.

Oh, and a possible NEW infection two fingers away from the original one. That red area is painful. And raised. Exactly how the other began. I’ve started salting it. I don’t know how far we will go with that.

So. The year is coming to an end. I’ll have had a grand total of EIGHT injections aimed at slowing AS down. After a whole 12 months of diagnosis…A mere total of eight weeks. A useless eight weeks as it wasn’t even consecutive weeks.

We have children who I believe have bit their vision therapy ceiling. I know I haven’t touched on it. I don’t know if any reader even has any children with visual processing problems, but here’s my update anyway.

We aren’t really moving UP much. And also, when I was reading how to introvert their very slow processing speed, it was mentioned that it CAN improve, IF there’s no cognitive disability. Ie. IF they aren’t intrinsically intellectually impaired. If they are…I can try but won’t get far. And that’s what I’m seeing with vision therapy. Their brains aren’t ready to keep progressing, even though I’ve added extra time for practice of previous exercises. This can be completed by weekly exercise and I chose every second week. And took breaks for my surgery and just because I knew they weren’t ready to go up a step.

As is typical for autism, they are struggling with left and right. And we are at a point where they are meant to be practicing that. But it’s not sticking. It’s like my nine year old angel who still can’t count to 30.

We are stuck.

Everything is stuck.

My body, their brains… I don’t even know what to hope for. Where to go. There’s no’ therapy’ to force your brain to cooperate. And vision therapy requires a cooperative brain. If I see it’s frustrating them, I’ll quit for a while.

It’s a scary time. Infections that aren’t leaving. A huge AS flare that began yesterday. Children’s problems that can’t be helped.

I feel stuck. I wish I could make things easier for all of us.

Heaven, I need a hug.