The Autism House Makeover - A Personal View



 In 1993 MyGuy and i decided to makeover our home.
 It was too small.  We didn't want to move, liked it here, all the usual reasons.
  The makeover sort of grew, because, well, if you do this and you want to do this too, you may as well do it now.
 We added a whole second story.
 Which involved tearing off the roof, and we had to move out for 6 weeks, even though moving out wasn't the original plan.  Then we moved back in and had to hook on to city water, and after we did, the post office told us, oh, by the way, this is unrelated, but you now have a new zip code.
  Yeah.  We didn't move.

 Anyway, my perspective on the program.
Max was two and a half when we moved back in.  One of the kids on the show looked about that age.
 The house they got looked wonderful.  Some aspects we should really incorporate, some we have.  Some i'd just like to have closeby.  It reminded me a lot of what my friend Sharon has been trying to put in place for years.  (For her story see http://sharons.tripod.com/autism/)
   i should say the program is not generally my taste, too emotional, though i was glad to see Temple Grandin.  And i was really happy to see a deserving family helped in such a fanstastic way.

   The part that most affected me, though, was the time when they showed the family the destruction of the old house.
  This is the sort of thing we're always doing to kids on the spectrum and not realizing it.  The oldest kid was visibly upset.  i could see him thinking, I thought these people were our friends.  They sent us to this wonderful place, and now they're destroying our home?
   i couldn''t tell how the younger autistic child was reacting.  He may not have been tuned in at all, but don't count on it.  He may have been more upset than his brother.
   And the parents knew this, but needed to put on their grateful for all you're doing faces.  That they were grateful, i have no doubt.  But they had to know at least one of their kids needed to not see this.
   You see, you and i, the parents and the show people, knew "the end from the beginning," but the kids only saw - what?  Their home being destroyed.

   Like in our own radical makeover.  One day, i was bringing Max home from preschool and decided to stop by and see the progress on the recently-begun project.
  The progress was: the roof was totally torn off.  Our house was standing, with twisted timbers on the ground and plastic tarps over the top.


  And Max lost his maximum smile and blew his roof, so to speak.
  i quickly took photos and LEFT.
  On the way to Papaw's house, i tried to tell him, over the screaming, what was happening, but it was of no use.
    This was no happy camper.
    A few weeks later, when we next visited and he saw there were new walls and STAIRS, could he finally understand. We had the same house as before except better.  He had his own room, and there was new, really soft carpet.




   If i could do it over, i would have just seen the house without bringing Max.
   But like the people doing theshow  house, i had no clue.  They were even taking a lot of care to make things right and special for the family, having just educated themselves about what autism means to a family, an individual.  i was still learning myself, one blow at at time, and i was just combining errands as seemed logical.   i didn't think how this would seem to Max.

  It takes extra effort to see the world in this different, no surprises way. but it's well worth it.

Confidential or Private?

Boom as a Toddler

   i am a private person.
  Here is how you will know my family:  MyGuy, Boom (for Boomerang Kid), and Max (for Maximum Smile).  Not exactly full openness, but protects their privacy.  Two of them have webpresences, and both have public and private personae.  Max has confidential school stuff, which is, in this computer age, no doubt stored online.
    What is the difference  between confidential and private?  Theoretically, the two words should mean the same.  i can tell my story, but not theirs.  Our stories are very much interwoven, but they must tell their own stories.
   i care passionately about education, but find i can only speak in generalities.  The school's story, you see, is not mine to tell.  i don't have enough behind the scenes details.  My son's education is vital to me, but i would be speaking from not knowledge if i tried to tell what's happening.
   There's a word for what i do if i tell your story without you, and it's not pretty.   i can come along side you as you tell your story.  That's called advocacy, much nicer than gossip, and it tends to be more accurate too.
   But confidentiality bothers me a little.  Though the two words are theoretically the same, confidentiality often reads as "I'm protecting me while hiding behind protecting this other person."  That may not be the intent, but it comes off that way.
   You may think i'm hiding something too.  That's your right.  i would say much more if i knew you.  As it is, i want to share, but feel bound.

The Power of Breath

   Lately i've been consumed with the concept of breath.
   God breathed on His newly created humans, and they became living beings.
   In the book of Ezekiel, the dry bones grew flesh again, but they didn't live until God's prophet called for the winds to enter them as breath.
   After His resurrection, Jesus breathed on His disciples and bade them to receive the Holy Spirit, who later came as wind and fire.
   On a more mundane level, what is the difference between a horse with no name and a horse who is a beloved friend?  Between a kennel dog and a beloved pet?  i rather think it's breath. 

   My own dog enjoys all the priveleges of a spoiled pethood, but she sure gets "uppity" if i get too busy to "breathe" on her, to spend time with her.  She deserves it all, but doesn't want to give me anything.
   After all, i've let her have things her own way, so why shouldn't it continue like that?
   Maybe it's about slowing down & being present in our own lives.  Inour families' lives.
   The Hawaiians have the concept of breath.  If you are not a native Hawaiian, you are haole, no breath, though some will admit that not all haoles are no-breath.   
   Whether here or in the land of Aloha, it's hard to slow down and find your breath,  but we miss opportunities if we don't.  Like the father in the Cat's in the Cradle song, the child has grown up.  A dog's life is so short.
  And that only scratches the surface of what we can miss when we hurry around breathlessly.
   Breath.  It's underrated.

Before and After

   This is a portrait of a feeling.
   Dry, alone, with a grey sky and a wide, clear but joyless path of duty before you.
   It's even off-center with stuff in the way. The path is clear enough, but there's bothersome little STUFF in front of you.
   Ever been here?
   This past weekend, i have "worked a Discipleship Walk."  My family knows that, along with the other STUFF i've been doing, it's pretty well consumed all of me in the days  and weeks leading up to the weekend, and i came home Sunday afternoon exhausted.  i dropped the luggage in the living room, collapsed in a chair, then dragged myself to bed for a three hours, dead to the world.
   Why would anyone do something like this?
   Joy.
   The Discipleship Walks that i participate in are a small part of the worldwide Christian Cursillo movement, http://en.wikipedia.org/wiki/Cursillo.  They go by various names, and are associated with various parts of the body of Christ, aka denominations.  Some are explicitly about the sponsoring church, others explicitly nondemoniational. These weekends are not about conversion.   The Disciples who come on the Walk learn, through talks and experience, the nuts & bolts of Christian life in a way that they've likely never known before, even if they've lived as a Christ-follower for decades. 
   It's exhausting, it's fun way better than an amusement park, it's joyful.  There's ALWAYS more than enough to eat.  Sleep, maybe not so much, but you're only seriously sleep deprived if you don't go to bed when you get the chance.
And the view along the path is a lot more like this now.

Some Thoughts about Getting Along

  It's not always easy.  
  The strangest things happen on the way to harmony.
  Or maybe disharmony.  Dustups WILL happen.
  But you really do have to keep trying, putting yourself out there, being open.  If Person A doesn't get the job done, go to Person B.  i often go to them both at the same time (copy emails to both, NOT blind copy).
  There's enough surprises without finding you've emailed stuff to someone you really, really needed to not say THAT to.  
  The hard conversations, they really need to be face to face.  Not over the phone or electronically.  i love email, but if you're bent out of shape & don't want to see the person, that's probably when you most need to see them.
  And those dustups, there're not the problem, large they may be.
  It's how you work through them, and keep the lines of communication open, even though you disagree on just about everything.
Life can degenerate into a catfight if we just throw slogans at each other.


Not a Condolence Letter



A friend's child received a diagnosis of autism this week.
Naturally this is disturbing, but, for my friends and anyone else in this situation, i want to say, this is not the end of the world.
You still have the same kid, with whatever loveable and challenging traits he or she had before The Name descended upon you.
What you have now is special education law to protect you.  You will probably have access to more services, which you have known for some time the kid needs but were unavailable to your family.
There will be a lot more red tape and paperwork than for the siblings not so blessed.  Possibly the worst is when you hear people, who may or may not be referring to you and your family, talk about the government handouts & privileges you get for no good reason.
Well, no one said life is easy.  This is another stage in your adventure with your wonderFULL kid.  And there are others who know what it's like, though every special needs kid is different.
My own son with autism was diagnosed at 2 1/2 and will soon turn 21.