I continue to focus on this utility behavior……yes, you might say I am obsessing over it

It truly is the one thing, the pivotable thing, that could make a difference in our home happiness

Who can help me with this?

Traditional OT/home safety: What can’t he safely do anymore, and how do we compensate?

What we need: What is he still motivated to do, what in the environment elicits behavior, and how can we intentionally arrange his surroundings so those impulses lead somewhere useful, satisfying or harmless?

Someone suggested my best resource is to speak to a neurologist or neuropsychologist

Yeah, no. Those guys play in the clinical space, not the day to day living at home with this disease space

Our current neurologist, who we respect and are super grateful to have on our team, said once that he appreciated the experiential insights a conversation we had brought him because he doesn’t see the hands on side of the disease

I think I have a resource lined up that could meet the need we have

Here is where I think I am going with this, here is what I think I need:

environmental engagement assessment.

I want someone to spend enough time in the house to observe him, rather than interviewing me and handing me recommendations. Ideally they’d watch what happens when he’s left to initiate activity himself: what catches his eye, what he picks up, what he carries, which cabinets/drawers he opens, what he tries to combine, what he repeats, and what he ignores.

Then I want them to help me answer three questions:

What should disappear? Things whose behavioral invitation reliably produces confusion, frustration or risk.

What should remain? Familiar objects that aren’t pulling him into problematic behavior.

Most importantly, what should we deliberately introduce? Objects, stations, activities and cues whose natural affordance leads toward something safe and satisfying.

Someone in my LBD support groups said “maybe he is bored”.
OK…..that may be true but that alone isn’t especially helpful—I need some solutions to try that I haven’t tried already

Solutions based on intelligence gathered specifically about him

Fidget boards and fidget items have been introduced by his sisters, unfortunately these haven’t yielded much engagement

That 8 x 11 page of activities didn’t yield a ton of success, for me, however, Nora does report she has been able to get him to help folding laundry, sweeping, vacuuming

And her being able to engage him is great, that is helpful

Now the focus is on the time I am at home with him, when I give him his freedom to wander

I do think another tuned in mind that specifically evaluates what he is attracted to and can think about what that means about how he is engaging or wants to engage with his environment is a worthwhile pursuit

Even if I can harness this 50% of the time it might make a true difference for us both

I have set up a packing station in the back of the water tower where I can bring my fragile items I want to preserve and pack them for safe keeping

Of course this reminds me that we still have way too much stuff……I opened a box to find miscellaneous camping pots and pans

Should I go ahead and donate these things now?
Or is this a ball of string that once I start pulling it I will have to keep going and going?

Or maybe I need 2 sections of storage, one is definitely keep sake, one is possible donation, family handmedown, garage sale, Facebook marketplace

The goal here is to keep balls moving forward towards the inevitable pivot points, to survive as best we can between now and when these moments occur

What are they?

A day will come that his care is more than I can handle, so what then?

Eventually we will need to move from this farmhouse, so what is next then?

I have always had a section of my mind specifically designated to efficiency analysis

No matter what I do, this part of my brain activates and analyzes the most efficient way to accomplish the task, activity

Take for example mowing the 4 acres we used to have: what pattern made most sense to drive the mower given the wider turning radius it had?

Or folding cloth napkins: is it more efficient to first lay all napkins in a stack, wrong side up, so the folding can be quick and efficient or is it just the same to pull each napkin from the basket and fold as you go?

Or is it shorter to take a left at Watmaugh off Stage Coach or to Turn at the Arnold light (anyone living in Sonoma or who drive to see us from Petaluma knows what I am talking about!)

So you can see how these mundane activities that everyone says “why don’t you ask Matt to help you with” might drive me literally insane because I naturally migrate to a place where I want the activity I am engaged with to be as efficient as possible

I am obsessed with this new line of thinking…….this new path of discovery—it gives me hope, a line of productive action

If I can solve this riddle, find the secret sauce, I can give Matt and me the freedom to live, exist, that we both crave, without being tied to a list of common suggestions that don’t appear to work for the unique people he and I are

The other thing about me……for many of you this maybe a statement of the obvious…..just because the answer isn’t readily available, easy to find, doesn’t mean I think there is no answer…….if it’s out there, I am going to try to find it

No wallowing in self pity here, no “I can’t do this” for too long

I still have boot straps to pull up……just typing that put fuel in my tank……

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