Where a husband and wife blog to: continue the story told in a book called Dancing in Cornmeal: Life with Autism; enhance the conversation about autism; relieve a writer's need to write; inspire (when the stuff here is really good); network; and share - especially recipes that follow the SCD and Paleo diets. See "Welcome" under TOPICS for a better description, then just keep reading along...

Sunday, July 22, 2012

Weird Things We Did This Week—July 21, 2012

Cut a hole in a wall.   Okay, so I could try to sell the cutting a hole in our wall as a renovation design choice.  But let’s face it.  I would never have considered the hole in the wall as part of our remodel design had I not been problem-solving around autism. 

Craig and I are doing a kitchen remodel completely on our own.  I design, plan each day’s steps,  remove wallpaper, clean up debris, prime, paint, and assist Craig as needed.  Craig does everything else—electric, plumbing, sheet rock, all installs, and hopefully flooring when we get to it.  We decided to take on this huge project ourselves for 3 reasons:  the cost; Lauren can’t be out of her house and out of the way of contractors for any length of time; Lauren needs to eat homemade food from our kitchen 3 meals a day.  (On occasion we go out to a few restaurants, but the options of food Lauren can eat at each are limited, and we’re not likely to be successful unless we go out during the restaurant’s slow hours, like lunch at 2:30PM or dinner at 4:45, so . . . inconvenient most days.)

Now that I think about it, DIY home renovation could fit under a category of Weird Things We Did This Year (because of autism).  What a task that would be—writing fully about all the long-term life decisions we have made because of autism.  Nope, too much.  We’ll stick with Weird Things . . . This Week.   

Craig has a full-time desk job, so this kitchen renovation is a weekend and “take vacation for the big stuff” endeavor.  We foresee it taking 6 months to a year to complete.  Craig took one week off around Memorial Day to begin the project with a big bang, and we have mostly been working weekends on it since.  This past weekend, we finally did the most intimidating part of the project—we cut a hole in the wall to create an entrance between our kitchen and “Lauren’s den.”

This had been the wall in our kitchen until the end of May this year: 
This was the wall this past Sunday (after demolition cleanup):

We had rearranged Lauren’s den the week prior, so our dining table is sitting there like the space was always meant to be a dining area.  The change opened up the floor plan of our house instantaneously.  It felt like the house jumped into this century and now has a fighting chance of one day looking semi-stylish—if ever we get all that mauve carpeting gone!  But that’s not what prompted my initial thoughts about cutting that hole in the wall.

You see, Lauren loves her den.  Or at least is accustomed to her den.  In her den are her toys, her books, her stuffed animals and puppets, and the TV on which she watches completely her own picks.  (Mom and Dad watch their stuff on another TV in an adjacent room when we have a chance to relax.)  Lauren used to have a touch screen computer on a desk in her den, but that computer died and she didn’t do much on it anyway.   She could choose from favorite music video shorts on the computer, but we never had an opportunity to introduce anything else she would enjoy on the computer, because she wouldn’t allow us.  If I sat down next to her at her computer, she would tolerate me there for 30 seconds, then kindly but firmly usher me away and out of the room.  For a few years now, that’s what Lauren does to me (or anyone) when I attempt to read to her, or play with a toy with her in her den.  She very kindly and firmly ushers me from the room and closes the door behind me.  If I don’t go at that time, or quite soon (depending on her tolerance), she will likely start hurting herself, and possibly hurt me, too.  So as not to feel like “failure mom,” I have dealt with this by insisting on a pleasant interaction with her before I go.  She just about always accommodates me, and I can compliment her (and myself) on our ability to communicate this well, which is a relatively new thing of which we can be proud. 

But Lauren dictating who comes and goes into that space is not something of which I am proud.  It is one area where her “socially inappropriate” behavior is allowed to rule, simply because we have no safe option. I hate to put it that way, because I don’t think Lauren is necessarily any happier about the situation than we are.  You see, as soon as Lauren has done a thing in a certain way, she wants to do it the same way next time and next time and next time.  It’s safe, comfortable and predictable, but I think Lauren is bored to tears being isolated, at least to the extent that she isolates herself.  Lauren is so happy when it is time to go somewhere or do something.  She wants it to be a place or thing predictable, like a hike or a trip to a favorite therapist or store; but she is happy when jumping up to get ready to go, and overtly joyful when she has had a lovely visit with a friend or been successful on a shopping trip, etc.  Knowing her as I do (and thinking her brain operates on multi-tracks at fast speeds the way that autistic author, Donna Williams, talks about her own mind operating), I think there’s a chance that Lauren is bored to tears sitting for a length of time in front of a movie she’s seen a hundred times.  It’s what she seeks, but how much of that is only because it’s what she knows.  Yet introducing more than what she knows is super difficult.

Lauren used to be most likely to participate in educational social activities (such as art projects and checking out iPad or Youtube) at our kitchen table, because the occasions would happen spontaneously.  I could pull out stuff like paints and paper when her mood was obviously calm and happy, and it wasn’t like “Time to sit down for your lesson.”  It was just a fun extension of a pleasant time at the table, so she was willing—not feeling anxiety from being called on to perform.  Probably having Bryn around, sitting at the table doing her own thing, and also apt to pull out fun stuff to do with Lauren, was a prompt in creating this natural scenario, too.  Since Bryn has been at college, and we have a smaller table in the kitchen, such natural table-time opportunities stopped happening regularly. 

Sometimes when we introduce or change something, such as suggest Lauren should sit in a new location somewhere, its’ as though we are asking her to cross a pitch black abyss on a wobbly 2 by 4.  Her fright is palpable.  If she starts hitting herself or physically trying to escape, it’s pretty understandable.   So every introduction and transition we have forced upon Lauren over the years has been after much need, forethought, planning, and dread.  Thankfully, every single time, the transition was much easier for Lauren in reality than Craig and I had feared.  Yes, I will take credit that the reason for success is probably all the forethought and planning, but I give credit to Lauren, too, that she is very capable; it’s still hard to see her go through what is apparently necessary for her to go through in order to walk over any new threshold.

This time, the need (literally for a new threshold) was obvious and growing greater to me.  With Bryn bringing new friends and eventual family over to our house, her grown sister can’t dictate to these people that they aren’t allowed to watch a Disney video with her.  Currently, when friends and family visit, they can go into that room and say “Hi” to Lauren, perhaps hold her hand, give her a hug or kiss and talk for a minute about what she was doing or watching, but she will always direct them to the door when she no longer knows what to do with them.  And they have to go.  There is a realistic element of fear in not obeying a clear request from Lauren to be left alone.  I can’t have my household dictated to by fear.  I need my guests and family to be comfortable here.  I equally need Lauren to be comfortable with others, to be able to share space, and to learn to sequester herself, not others, when she really needs to be alone.  I believe she will be happier if her life expands and she can become comfortable with the comings and goings of people in and out of “her” room.

I also hope to, and believe we can, recreate the natural learning environment we used to have in the kitchen with our old, large kitchen table now in the new dining area.  I hope to extend Lauren’s comfort with new objects by leaving them on the table when we’re finished actively playing with them, and she will be able to return to them privately and experiment some more without Mom hovering.  I hope that she will become more accustomed to her iPad and learn to navigate it better in this casual fashion, and I hope that maybe we can do crafty projects once again, too.   Anything to broaden Lauren’s world, and to help her feel comfortable in exploring and accessing all it has to offer.   

With this vision, my battle cry became, “GIRL!  That room is about 20’ x 15’.  We did NOT deed you that amount of square footage!”  And the hole was cut into the wall.  We had designed the kitchen and dining area in many ways before settling on creating the hole in the wall, so I am very thankful to God for the weight that grew on my heart that “Now’s the time and this is the way.”  I saw no other way.

Here’s a view into the new dining area with Lauren’s TV/play area looking through the new entrance:
We have not yet used the table in its new location, so I have no idea how successful eating in (the room formerly known as) Lauren’s den will be, or if it will take much figuring out and dealing with resistance from Lauren before we are successful.  Certainly if we have guests, I am not going to listen to The Lion King or A Bug’s Life while we’re leisurely finishing our meal.  (Lauren eats fast and leaves the table as soon as she is done.  I’m sure that she could live 1000 years and never discover a value to eating slower and just hanging out with an empty plate for a while in order to visit.)   We will cross all those bridges as we come to them.  (Which sounds cavalier . . . actually, Craig and I are already excitedly making plans for forcing changes to Lauren’s expectations and rituals.)  My witness of Lauren tells me that she wants her life to be broader and to interact comfortably, and more, with the people she enjoys.  After the sheetrock dust settles and the paint has dried, we will actively tackle the workings of the new room with 3 entrances and no door to shut behind people after you push them out.

Lauren was home the day we made the hole, so . . . what was her reaction?  Mostly fascination.  We had friends help, so she seemed happy that there was excitement in the house, and it was hard to get her to move from the den for her own comfort during the loud sawing.  That day, she was seen walking though the new entry once (by Craig) with a few spins at the threshold, just like she did as a little girl walking over thresholds.  Craig had the privilege of a 2nd “Lauren-through-the-entry” sighting today (4 days later), but I haven’t yet seen her cross it.  There is a lot of noise from Lauren’s TV to the kitchen, and from the kitchen and laundry room to Lauren’s sitting area, but I think Lauren likes it.  She is checking out what I’m doing in the kitchen often and seems quite happy with the activity.  My theory that she was bored is so far holding up.  She seems happy that her world is broadening, a little more exciting and unpredictable.  Maybe we’re presenting the change at a nice, slow and steady pace?

This isn’t just a hole in the wall as part of a home renovation.  Or even just a hole in the wall with the purpose of curbing Lauren’s undesired behavior.  It’s a puzzle piece in relationship building.  It’s creating an environment that will best promote Lauren continuing to grow and learn.  It’s creating a household where we all can live happily long-term in a way that respects each of our needs and fosters moments of loving exchanges.  The ebb and flow of this—another “weird thing we did this week”—is what makes up our life . . . and makes it worth living.

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