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, June 30, 2013

We’re Back! Post-renovation Update

Nine months have passed since my last blog post.  I intended no more than six months, but…that’s life with autism.  Our DIY (with the help of friends) home renovation began (as a kitchen renovation) with the removal of an upper kitchen cabinet on Memorial Day weekend 2012.  We officially declared the renovation “complete” on Memorial Day weekend 2013. The label “complete” was for the purpose of sanity.  There is quarter-round molding to be installed, a few paint touch-ups to be made, placement of electrical switches to be perfected.  (Craig’s ability to do this himself, and Lauren’s '”interest in” light switches, results in more migrating of switches in our home than in the average home.)  Our house is exactly 40 years old this year, so there are always problems to be addressed.  So like it was before the renovation, and ever shall be, there will never be a lack of home improvement projects to choose from each weekend.

The facts that deem the renovation “complete” are:
Our home is 100% livable.  We can cook any meal without lack of any appliance.  We can have guests over (even overnight) and there is space for everyone to be comfortable.  And I am happy with the home I have to present to the world.  I no longer think, “We can have so-and-so over after such-and-such is done.”
So now that you know “complete” is relative, onto the important question.

Did the renovation accomplish all that we hoped it would for Lauren’s world and our relationship with her?

(See blog post Weird Things We Did This Week-Cut a Hole in the Wall)  It did!  And more so!  As my dear friend, Lisa, says, “Opening up your home has really opened up Lauren’s world, hasn’t it?”  (Or she may have put it, “Breaking through walls in your home has really broken through some walls for Lauren, hasn’t it?”  I don’t know which it is, but I like the visual of each, so pick your favorite.)

Remember that wall that we broke through (almost a year ago) to create access from the kitchen to Lauren’s den?

2012-05-28 13.12.43 

Through that new opening is our new dining area.  When you enter it and turn right, you see half the room is still Lauren’s den:
Here it is from the other side of the room:156
This is the change which impacted Lauren’s world the most.  This is the area where Lauren had been isolating herself.  When we entered to interact, she would “allow” us to stay for a minute or two, with hugs and kisses even, but then she would usher us out, seemingly so that no demands could be placed on her.  The single entrance to the room was a framed, hinged door, which she shut behind her visitor.  This is now that entrance (top middle of picture, to the left of the book display case):
Two entrances, no doors.  (Actually three if you include the sliding glass door to the sunroom.)  No way to keep people out, or to keep them in if they are in danger while she’s having a fit.  But that doesn’t even seem important anymore, as the new Lauren rarely has a fit.  She spends less time in this room, but anyone may join her when she is here.  We were 100% successful in accomplishing the goal of ending Lauren’s self-isolation and aggression.

The other room that changed in the same way (from shut-off-able room with one door to walk-through with 2 entries) is the TV Room--formerly known as Craig’s Office.


View from doorway.  There’s a solid wall behind Craig’s head, though with a railed opening.


View from same doorway, but it no longer has a door.  Half the wall that was behind Craig is gone!

This was a risky thing we did here.  Design-wise, it’s an awesome change!  TV viewing is wonderful in this space.  This open space initially was still intended to be Craig’s office.  But as the house came together, and we realized our spaces weren’t cozy or conducive to conversation and visiting, we rethought the layout of a few rooms.  Craig began to dream of this room as a TV room and we put our noggins together to come up with new (and ultimately better) office space for him.  So, the risk of opening up this room was, at first, Lauren having access to a working Dad all day.  Then when Dad’s office moved, the risk was of Lauren deciding that this was her space and thereby Mom and Dad losing their cozy TV time.  But we decided the payoff was worth the potential behavioral challenge.  And it paid off HUGE!

We don’t watch any TV Lauren isn’t welcome to watch with us, so Lauren may always join us when we turn on the “big TV.”  To keep the “big TV” ours, we don’t put it on for Lauren during the day.  It’s for special, cozy family viewing in the evening. And Lauren now joins us just about every evening for this cozy family viewing.  In fact, we have created a Star Trek fan out of her!  (Maybe a later post on what in the world she could be thinking about those crazy, often scary-looking aliens that pop up in virtually every episode.)

Lauren was pretty much incapable of watching TV with us as a family before the renovation.  She was rarely in the living room (where the big TV was) except when her sister played piano, or there was a fire in the fireplace.  The access to the room was much narrower, so while walking down the hall, even if she wanted to join us, she had to force her body to transition into the room in a split-second before she would pass the entry and the opportunity.  Here’s that space before:

This was the day Craig and his father took down the wall that divided our hall and our living room (which was our former “big TV” room).  Before the renovation, Lauren would walk down the hall and see through those crazy 70’s railings that we were watching TV.  We would call to her and invite her to join us.  Her smiles and eyes would tell us she was interested, but she had to make a choice (and follow through) to turn into the room when at the entrance, which is here on the left.

I hoped that giving Lauren a wide open room would allow her the opportunity of space and time to fulfill that beckoning to join us (from both her and us).  And my hope was fulfilled.  She began occasionally to join us for TV viewing in this new space last December:

This is from the same angle as the last photo and the wall as barrier is gone.  Salvaged barn beams are in its place as support and visual divider.  Until May, the TV was where that picture is on the far wall--upper center.  I have to credit our older daughter, Bryn, and her fiancé for first getting Lauren into this room to watch TV over their Christmas break from college.  They helped Craig and I to accept, and then discover the wonder of, Phineas and Ferb.  (Hilarious.)  Lauren was curious what Sister and beau were watching that seemed so crazy and kid-friendly, and was soon sitting between them, holding their hands, watching episodes at a time.  When Bryn returned to college, Lauren had only to hear the theme song to Phineas and Ferb and she would come running to join us on the sofa. 

Phineas and Ferb soon became old hat, though we watch it occasionally.  Now that Lauren is sitting on the sofa with us before we even pick a show, family TV time is filled with possibilities.  As I mentioned, right now, it’s Voyager season at our house.  (Yes, avid fans, we properly watched all TOS and TNG before beginning Voyager.)  When the opening music plays (Voyager’s theme song is the prettiest music ever), Lauren usually comes running to see what Captain Janeway and the gang are up to this time.

A recent evening, Lauren sat between Craig and me as we watched Voyager.  (Well, while Craig dozed on and off and got the general drift of the plot of Voyager.)  She had Craig’s hand on her lap in her right hand, and her left arm was around my back.  She pulled my head onto her shoulder (I’m newly getting some affection from her for all the years I showed my love for her this same way) and I wrapped my right arm around my waist so that I could take her left hand into my right behind my back.  We watched that way for quite a few minutes.  And I had tears slowing sneaking down my face.  I thought, “This would never happen in a residential facility” and “We’re gonna be alright.”

Lauren’s also shown an interest in watching British TV with her Mom.  I couldn’t believe it when she sat at length for a lame, old production of Mansfield Park, and even joined my foray into Doc Martin. (Baby steps I’m taking to avoid joining the world in its Downton Abbey addiction.  I know I’ll be hooked and get nothing else done once I start.  But if Lauren’s into it, too…perhaps it will be acceptable time spent as our “Girl Thang.”)

A curious up or down side (depending on the perspective) to the new house layout is that Lauren is moving constantly.  It seems like the open floor plan with its endless number of circles and figure eights is like a siren song and keeps her moving through it.  One positive to this is that her TV watching during the day is down about 80%.  She still sits—to play with toys, look out windows at rain and other goings-on, and to read/look at her books—and is doing these non-TV things more than she ever did.  So she is up and down from the floor, sofas and chairs doing those things, but not in the endless, sedentary way that she used to vegetate in front of the TV when left to her own devices.

Another positive is that she has lost about 30 lbs this year.  (Her heaviest in life was about 210 lbs, and she is down to about 160 lbs right now.)   We partially credit diet changes (adding paleo elements to SCD), but her calorie consumption really hasn’t reduced significantly, if at all.  Everyone says, “Wow, all that hiking is doing you good,” but the weather and our busy-ness has reduced the number of days we’ve hiked over the past year, so….we really think it’s her constant body in motion within 2000 square feet that has mostly done it.
A third “up side” to her constantly moving through the house is that it’s easy to get her interested in what we’re doing.  Just over the past month, activity has quieted so that I can begin to address a goal—having Lauren help me in the kitchen.  Reach people with autism through what they love, right?  Well Lauren loves food.  She will do whatever she can to make food come quicker.  Ironically, this sometimes causes her to turn off a stove burner or oven prematurely—that’s what Dad and Mom do to make the food done, right?  I’m hoping to harness all that “pro-eating” energy into setting the table and useful help in the kitchen.

While Craig was away on a business trip recently, I baked enough that Lauren stirred batches of yummy ingredients for me 3 different times, and even stirred Mom’s “Yummy Hot Dog” creation in the skillet on the hot stove!  It helped me to appreciate the wonders of a typical person’s brain/body connection.  Did you realize that the angle and action of your muscles lifting a spoon to your mouth to eat is completely different from the angle and action needed to stir?  And stirring a small bowl of ingredients vs. a large bowl differs again.  Lauren’s grip was inadequate and not naturally correcting for either type of stirring, so we needed lots of hand-over-hand action.  (That raised my ire a little bit about her not getting PT and OT services over the years, but….maybe that’s a rant post for another day.)

Here’s our new kitchen island, which is where Lauren and I bake:

It was created from an antique dresser turned desk that has been in the family for over 100 years.  We purposely kept the top lower than our countertops so that it served like a big, country kitchen table—allowing arms to stir big batches in big bowls without excessive elbow bending and tiring.  It also allows for lots of space for a helper at my side.

Oh, those pots and pans that are on open shelving?  Lauren lets us know when it’s time to eat (ready for Elevensies, Mom & Dad?) by pulling down the cookware to her favorite dishes and placing them gently on the stove.  It’s like our little meal alarm clock--tink, smack, bang—if always going off a little close to the finish of the last meal.  We purposely chose open shelving for many design reasons (plus it’s cheaper than cabinets  :-), knowing that allowing Lauren such easy access to pots, pans and dishes might be a problem, but also hoping that this will encourage her participation in kitchen activities.

So far, it has mostly been a positive, with her putting items back where they belong when she sees them out of place, and her having no visual barriers to following and learning the process of things we’d like her to be able to do, such as set the table.

That shiny thing in the corner is a homemade cookbook that sits in a stand.  We occasionally find that binder, or another like it, flat on the counter open to a page with a familiar, yummy recipe with a photo.  And we say she doesn’t talk.
There’s really only one down side to the open floor plan.  And it’s a blessing/curse.  I’m blessed in that my daughter with autism likes everything in its place.  (So do I!)  Those cookbooks on the shelf in the photo above—if I take one down and put it back in a different location (or even turn my back on it for a minute while still using it), Lauren puts it back where it belongs.  So it is very important we’ve thought through and believe in where or how we’re going to keep or decorate things, because future variations may not be tolerated.  I love that about my girl (and anyone).  Believe in what you do and stand by it!  (Even if it’s just the direction your salt and pepper shakers face!)  Oh, so the down side?  Lauren has disagreed with me on some of my decorating decisions from day one.  These 2 shabby chic chairs that sit beside the piano? 033

Apparently, they should be about 5 inches away from the wall.  (It took her about 5 months to give up that conviction.)   She and I push-me pull-you’d over the placement of a book case and end table, too, but….she has given up after many months.   (I try not to wallow in VICTORY!!!!)

Lauren now only has opinions about where her toys and stuffed animals (the ones in community  spaces, thank you) should be and, you know what, she can win that fight.  They’re hers, after all.  I will only challenge her decorating savvy when Bear038 (below) is in a seat I need for a guest.

It’s good to be writing again.  I feel like you visited my home (as well as my blog), having shared so many photos of our new digs.  Come back soon, y’hear?!

1 comment:

  1. What an amazing transformation. You guys are so amazing and I know that Lauren appreciates all you do to create the best environment for her.