Wednesday, April 15, 2015

The very real monster in the dark


KNOCK KNOCK KNOCK KNOCK. The noise jolts me awake at 3:40 a.m. Instantly, I know what it is. Our babysitter tucked Max in last night because I got home late, and she closed his bedroom door instead of leaving it ajar like Dave and I know to. Now Max can't get out, so he's banging on his door. The cerebral palsy makes his fingers stiff and he can't twist the door knob.

KNOCK KNOCK KNOCK KNOCK KNOCK KNOCK KNOCK.

I jump out of bed, open Max's door and help him in the bathroom. Then I tuck him in, kiss his forehead and return to bed. Only I can't sleep with all the thoughts rushing through my head. 

I think about how I've been lax in getting an adaptive handle for Max's door; I've seen them sold at sites for people with arthritis and the elderly. He's getting older, and probably would like to fully close his door sometimes and be able to open it independently. Come to think of it, we could also use one for the basement door, not that I want him going down those steep stairs without one of us around.

I think about what would happen if I didn't hear Max knocking. He'd eventually give up, go back to bed and have an accident. It would be upsetting to him. It wouldn't be fair.

I think about the issues Max has with manipulating door knobs. Will that change over the years? In the scheme of life skills, it is not one we have ever brought up with the occupational therapists, given that we're still working on biggies like pulling pants up and down, taking a jacket on and off and brushing teeth.

And then, my mind goes to that scary place, the one I try to avoid. I wonder about a time when I will no longer be around to turn the door knob for Max. Who will hear him knocking in the night? Who will take care of him like I do? How will he someday get by in this world without me and Dave? How will he even comprehend that we are gone? Who will be there for him? 

This is the amorphous monster of my nightmares.

Suddenly, I just can't lie there anymore. I get out of bed, creep into Max's room and sit on the edge of his bed. I listen to his even breaths, and focus on those. It's calming. My mind can't wander as I hear him sleep so peacefully and peer into his sweet face in the light of the moonlight.

I leave his door open. I return to bed. Slowly, I nod off. I'll wake up to taking life one more day, one more night, at a time.

17 comments:

  1. I know your post is about The Big Picture, so pardon my narrow little small-minded practical situation-specific response: Cover the door latching mechanism along the edge of the door with a strip of duct tape so the door can swing shut all the way without latching. If it's still too hard for Max to grasp and pull the knob on the now freely-swingable door, attach a loop of rope (or fire hose!) to the knob so he can stick his arm through it and pull. Then put "buy adaptive hardware" somewhere at the bottom of your to-do list.

    --Phyl

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    1. Phyl, I did that as a temporary fix! Thank you!

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  2. I think this is one area where I would use adaptive equipment and teach Max to advocate for himself the need of adaptive equipment (that will help you quiet the "what happens when I'm gone voice"). Honestly, even if Max learns to operate a traditional door knob, would you want him to do have to do it quickly in an emergency, like a fire? But as for the basement stairs-yeah, I'd leave that one difficult for now since he can't be independent there anyway and it would be a safety concern if he tried. At our house, we try to make every area where our child can be independent (or where we are actively encouraging independence) easily accessible. For us, that meant rearranging the pantry to lower snack items, putting plates and cups in lower cupboards, his clothes are no longer in a dresser but in baskets on the floor, etc.

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    1. Good point, I do need to encourage Max to ask for adaptive equipment as he sees fit. We have arranged other parts of the house to be accessible, as much as possible.

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  3. I don't know what to say except I sure hope Max will have loving people around him his whole life...

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  4. Time to make some doors Max-cessible. (Pun city!)

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  5. Would this type work? It's a standard (not adapted) item - search "door lever".

    http://www.lowes.com/pd_13529-352-F10+V+ACC+619_0__?productId=3243082&Ntt=door+lever+inside&pl=1&currentURL=%3FNtt%3Ddoor%2Blever%2Binside&facetInfo=

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    1. A lever might definitely work better than the knob, thank you. I'm trying the adaptive handle I ordered from Amazon first.

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  6. Try a thought experiment. Ask yourself, "Are my fears and the unknowns for Max all that different for the fears and unknowns facing my also-growing-up, non-disabled daughter? Obviously, there are significant differences. Yet, maybe not as entirely different as you may think. You won't always be around to look out for her, either.

    Also, self-reliance, wherever Max can develop it, is a good partial answer to your question about who will care for him. If he can open doors and communicate for himself, then he won't need someone who cares for him exactly as you do. He'll need help, of course, but not necessarily all-encompassing care and 24/7 supervision. Door handles aren't a bad place to start!

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    1. The fears and unknowns for Max are by far different from the ones I have for my daughter, Andrew.... Yes, I couldn't agree more, encouraging self-reliance and independence are the best possible things for Max! The door handle was one we hadn't yet addressed, but now we will.

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  7. Hi honey, why not those knobs that aren't round? You know, the long flat ones that are often on bathroom doors? Then he just needs to push down and it opens. As far as his future, my older children both know that if something happens to me, they will care for their younger special brother. Not that we want to "burden" our other children, but that's what family is, right?

    As they've aged and married, it's still an understood thing. And not in a resentful way at all. They love Kameron very much, and are fine with "inheriting" him after I'm gone.

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    1. Yes, levers! And I don't think of helping Max as a burden, either—it's what family does. Just like children care for aging adults.

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  8. We are setting up a Special Needs Trust for Tim, but it's not exactly the same as having mom or dad there 24/7. I feel you.

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  9. I can't speak to the monsters, but all of the door handles in our house are the lever types. They are indeed easier to open, and they don't have anything of "adaptive" about them.

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  10. Beautifully written Ellen. And as a special needs Mum I know I don't think about the future when I'm not here to help my special child. My 'normal' child will have the power of reasoning to make their own decisions but my child with an intellectual impairment won't. It's terrifying so I deal with it by ignoring it and coping just one day at a time.

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  11. Ellen I have the same monster in me. Usually, she's happy to play canasta in the corner, but man when she gets going, hard to keep her down. I try to be positive but the future can be a scary place. I prep as much as I can, plan where I can and then throw my hands up and try to be in the moment - that's what it's all about anyway right? Great post. Great writing. Thanks for sharing.

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  12. I erased a troll's comment. Here is my comment policy, listed on my About page:

    I love hearing from you! However, I reserve the right to delete comments as I see fit. Specifically, I will delete...

    • Comments that are spam or questionable spam. (Linking to relevant content is fine!)
    • Comments that include profanity or are libelous, abusive, harassing, threatening, false or misleading, or that generally disrupt the civility of this blog.
    • Comments that attack a person individually.
    • Comments about my children that are offensive.

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Thanks for sharing!



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