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...

Friday, July 26, 2013

Love, Vision, Patience and a Whole Lot of Work: DIY Home Renovation and Autism

The purpose of my last blog post was to convey the positive changes in Lauren and in our house as a result of our renovation.  It didn’t occur to me that it gave a skewed perspective of the last year of our lives.  I thought the adjective “DIY” was enough for any reader to understand that this was not a simple undertaking, and that we’re not working with an abundance of wealth here.  (If we were, we would have hired a contractor for just about everything, as Lauren can keep us busy 24/7 without anything extra on the agenda.)

Two experiences made me realize that “DIY” did not convey that reality.  The first was when a friend and I were talking and I mentioned an item I don’t currently have that I would really like, but it won’t be in the family budget until (hopefully) after our older daughter’s wedding next year.  The friend responded that she is quite jealous of anyone who has a new kitchen.  I thought this was odd, as we weren’t talking about kitchens or even houses.  I realized later that she has the item I said I wished I had, and that she had a knee-jerk defensive reaction.  I sincerely wasn’t coveting what she had, nor suggesting that my family is poorer than hers, nor that her family makes bad financial decisions.  (Our family does spend money on different things than most people—mostly the exorbitant, daily fees of autism: expensive supplements; special diet food; 4X the water usage of the average family; replacement of furniture [we’ve had 12 sofas in 20 years]; the many other items that are short-lived because of “uncommon” use by a family member.)

Anyway, in case the last post seemed bragging, I want to better convey that talking about our new kitchen and living areas is like talking about having lost weight or won a Strong Man competition.  It was a damned lot of work that took a whole year, will take us a long time to recuperate from financially, and had its trials, errors and injuries for which there is no one to blame but ourselves.  There was no contractor (though there were awesome friends).  There was much manual labor and I invite (and will help) anyone I know who wants to commit to as much planning and labor.  So the consequence of this past year (prettier and more spacious-feeling digs) does not feel like an extravagance.
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Strong Man manual laborer, Craig, takes up floor in our front entry last October 2012. 


The other experience was another friend expressing how happy she was that Lauren “didn’t blink an eye” at the extreme changes to her world.  She was under the impression that Lauren transitioned peacefully and happily.  That is far from the reality, and to show her the extent of disruption to Lauren’s world, I showed her photos of DURING the renovation, and told her stories of how Lauren responded to the chaos. 
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DURING the renovation, “walls coming down,” with a focus on the sheetrock dust in the air. 
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The dust seemed to hover in the air throughout the renovation, despite cleanup every evening.

BEFORE and AFTER photos are great.  Those are what I showed in my last blog post.  The Lauren AFTER the renovation is as different from the Lauren BEFORE as is our house.  The AFTER pictures are ones of improvement overall.  But this is thinking in terms of 2 pictures exactly one year apart.  The Lauren DURING the house renovation was one of turmoil, just like our house.  Craig and I were both impressed with how she handled all the change and disruption, but there were moments when she came completely undone, and we didn’t blame her.  She was expressing outwardly the anxiety we were also feeling, but probably not even to the extent that she was.
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Poor Lauren’s den on painting day.
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Poor Lauren’s den the day before we left to have the hardwood floors installed.  The carpeting and underlayment are up, the room echoes loudly, painted baseboards lay across the dining table.  Her chair and beloved stuffed manatee still sit facing the TV, in case she wants to brave the echo-y room to watch. 

Even as we began the renovation, I was fearful that the trauma of such extreme change to Lauren’s world would be a bad thing.  I explained to many that Lauren relates to her world through objects, rooms, locales.  Typical people can say things like, “I think I could lose anything (such as in a tornado or house fire), as long as I still had my family.  We can always start over together.  It’s about relationships, not things.”

It’s the opposite for Lauren.  She relates to her world through routine and familiarity with her “things.”  I received affirmation of this theory a few months into the renovation when I happened to read a 20-year-old article by Temple Grandin in which she says the same thing—that children with autism relate to the world through objects and their surroundings.  People can come and go, but don’t take away the kid’s familiar “stuff.”  I want to believe that Lauren is as attached to her family members as she is to her familiar objects and surroundings; after all, we have smiles, giggles, sweet kisses at bed-time, and familiar “jokes” with each other.  And it’s true—she is attached to us, too.  However, she has positive relationships with us because of the way we show love.  We are careful that her world stays consistent, and that changes are made in a way that she understands them, so they cause the least anxiety possible.  Only in this balanced state of “people supporting environment/environment (staying relatively constant) to support (relationships with) people”  is she able to appreciate and grow in relationships.
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After the floors were laid down, but the kitchen was still on the  TO DO list.   “Mom, Dad…how do I ask for dinner when there is no kitchen…?”

I was worried that the renovation would threaten this delicate balance.  If Lauren values and relates to her surroundings the way we would relate to others, then tearing up this home and taking away its familiar elements would be like….I don’t know…killing a beloved puppy.  Harsh!   This thought was what made the renovation slow in starting, but it is also what made Craig and I plan it in such a detailed fashion, then orchestrate it in a slow and systematic fashion.  Throughout it, we cleaned up each night, showed Lauren the changes we’d made, and lived for a short while acclimating to the changes before making the next set of changes.

It was only at the end, when we had to literally tear up everything and move out (to put in new floors) that we could not use this “slow and steady” approach.  And this was the worst moment for Lauren.  Lauren had been out of the house for 3 days and was ready to come home to her familiar surroundings and routine.  Even though our kind neighbors and I had spent hours completely setting up Lauren’s bedroom and den so they looked virtually the same as before we left (but with hardwood floors), her reaction was devastating.  I won’t describe in detail, but—imagine if you walked into your home after 3 days absence and discovered your family massacred.  That was pretty much her reaction.  Craig and I wondered for a day or two if we would see Lauren’s sweet, peaceful side ever again.  We felt horrible for doing this to her.  But the reality is that they were only things, so they could “rise from the ashes.”  Her routines were still the same, she just needed to be re-introduced to them in the new surroundings.  And Mom and Dad were the glue that bound the old to the new.  We were the most important “parts” to the routines.  That’s how people turned out to be greater than things in the end.  Hmm…interesting analogy just came to mind—Lauren did not have the capacity (nor did her objects) to bring about order without Mom and Dad’s intelligent design.  (Now I sound like I’m bragging!   :-D)   Our relationships enabled Lauren to find peace in her home again.  And she seems grateful.  For the peace, and for us.

In Lauren’s bedroom after the renovation... 


Each morning, Lauren throws that blanket down and then works at it to adjust Clifford’s face until it is fully visible and smiling at her.  Clifford’s our morning watch:
“All is well.” 

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