new videos to come

I have been making some videos lately to illustrate Ellie's progress with speech and spontaneity and it's my goal to load them this weekend.  Cross your fingers.

My expected behaviors

EXPECTED BEHAVIORS AT CAMP FOR ELENORE


1. Use kind words to friends and adults.

2. Speak in a level 1 voice to friends and adults.

3. If an activity makes me anxious or upset, use kind words to ask an adult for help.

4. Stay with the group.

5. Do the activity the group is doing.

UNEXPECTED BEHAVIORS AT CAMP FOR ELENORE

1. YELLING at friends and adults is unexpected.

2. RUNNING AWAY from friends and adults is unexpected.

3. LYING DOWN during group activities is unexpected

4. NOT LOOKING AT THE SPEAKER is unexpected.

 
We have been exposed to Michelle Garcia Winner's program, Social Thinking, because Ellie's interventionist uses it solo and in tandem with the SLP.  I used it to model this prompt for Ellie at camp.  A completely worthwhile exploration into how our kids think and how to get them to engage with the world in appropriate and functional ways. http://www.socialthinking.com/

Cheez it pleez

I don't know what it is about Ellie and carbohydrates.  I can't believe the hype that all kids with spectrum disorders like brown and crunchy (although that kid hasn't met a cracker she didn't love).  I think that it's a predictable texture, and this girl is all about predictability and routine.  I read the same book--Click Clack Moo--to her for a year and a half at afternoon nap time (before a bad spring forward ruined afternoon nap forever and she would only nap with me, in my bed, every day, which led to...problems).  She only likes dresses with pants.  She only drinks water.  She only plays Hogs and Kisses on Angry Birds, not any of the other varieties, although she is interested now in the monkeys in Rio.  She already has mastered my move, which is to control, control, control in order to alleviate anxiety.  Unfortunately, it took me almost 40 years to realize that the control is a facade, the anxiety will still bubble over, and the results can be difficult to bear.  I want to teach Ellie better tools than I was taught (none).  I want to show her that life isn't a thing to be managed; it's an adventure to live.  You just gotta remember to pack your crackers.

six is the new six.

Ellie had a birthday  this week, and while I don't have a lot of time now to write about the progress she has made in the last year, I will note that after six years, I am finally ready to say that she is toilet trained.

Whew.

Sense of self.

One refrain I hear too often from parents whose children are newly diagnosed is that they aren't sure now who their children are.  They move around their child like he or she is a stranger in the home.  I am never certain if it's the power of the diagnosis that somehow interferes with a parent's viewpoint, or if somehow now the child is being perceived as sickly or different or Other.  I know that when Ellie was first diagnosed I kept thinking, how did I not see this?  why wasn't I more intuitive?  The brain tricks us, makes us see the atypical as mere eccentricity, the stereotypical as quirky.  We can't muster the idea that atypical is, in fact, atypical.  I also wonder if acknowledging the atypical in our children is too close to forcing us to acknowledge the atypical in ourselves.  I have caught myself numerous times being overwhelmed with auditory input and, in trying to quell the din of house, three children, and yowling cat marched into the living room to snap off Kai Lan with a brusque,"I can't listen to that anymore."  In those moments I know that that overstimulation is what Ellie deals with all the time.  I can't even imagine how the world must seem to her.  How does she cope?  How has she learned to manage it when no one can truly understand her highly peculiar and particularized needs?

Yet for all this, I see her in very clear moments, hers and mine, and I am so content.  This is the child I longed for.  This is the child I dreamed of.  What came with her was unexpected at best.  But she is no stranger.  She is her, and yet she is me.  We share that perfect tether of mother and child.  She'll show me who she will be in her own time.  Right now, she is just my fulfilled wish.  Wonderful.

Don't cure me....cuz I'm not sick

The biggest issue I have with organizations like Autism Speaks is their persistent push for a "cure."  If autism were like measles, or beriberi, or AIDS, I'd say, heck yeah, let's find a cure.  Because those diseases kill people.  But autism isn't a disease.  It's a disorder, it's problematic, it's an interference and it's devastating in its own way...but it's not a disease, like pregnancy is not a disease, like being black is not a disease, or gay, or short.  It's a status, it's an immutable, but it won't slice your life expectancy in half.  Herein lies the rub; I think that the well-meaning, well-connected, but ill-read people at AS think that if we just...I don't know, do what?  Tweak a gene?  Electroshock a brain?  Inject a protein?...that the autism will all but disappear.  Isn't that what we all want?  For it to go away?  I do not.  I posit that the differences in children with autism are so valuable, so fundamentally necessary to how society regards itself as masses of cognitive entities, that eliminating the autistic is a disservice to us all.  We need to see that difference is important.  Variance has value.  I don't want autism to be erased from my child if it means that she is no longer the child I know and love.  I think a better use of resources is for therapy to bring those children who are so impaired as to be unable to manage their lives independently into the fray of functional, the realm of workable, the world of welcome.  We need to alter our view of what it means to be essential to the larger culture.  It isn't being perfect, intact, "normal." It's offering counterpoint, demonstrating tolerance, and offering appreciation for those who do not move through life in lockstep with the rest of us.  My kid's not broke.  Don't ask me to fix her.

People will think it. And some will say it.

I took the kids to Target the other day to buy party hats for my birthday.  (I was 39 on Friday.  No, there was no party.  They just wanted party hats.  We all wore them.)  I took all of them to the bathroom before we headed over to Purvis Park.  Ellie quickly realized that the acoustics in the loo were conducive to making her often-incessant vocalizing really loud, really vibrato and much more interesting than usual.  She moved in her frenetic way, back and forth in front of the sinks, singing her proprietary song, really working the acoustics of the tile.  A woman came in.  She observed all my kids in various stages of handwash, dress-fix, toilet flush, and then her eyes rested on Ellie.
"What is that about?"  she asked.
"What is what?"  (I had Helen half out of a stall, pulling her dress out of her underwear, while Emma wailed that she couldn't reach the sink by herself). 
"What is she doing?"  She pointed a painted finger at Ellie.  Now that I really looked at this woman, she was neither young nor old, but she definitely had a way around her eyes that I didn't like.  I recognized it later as judgment.
"She is vocalizing."  I patted Emma's hands dry.
"But what is it?  I've never seen a child do this before." 
"She has a spectrum disorder.  This type of behavior is very common."
Her eyes grew wide, wide.  "She does this all the time?"
"A lot.  Yes."
Pause.  "And you allow this?"
I've had hot flashes recently.  They are generally horrible and wipe me out for hours after.  I got very, very hot in that bathroom.  A hot flash it wasn't.
"There is no allowing or not allowing.  This is what her brain is telling her to do.  It's neurological."  I tried to get the twins to move closer to the door to cue Ellie that yes, we are leaving.  Right.  Now.
"Well, I'm not sure that bringing her out is the best idea.  I mean, this is very disturbing."  Now the woman's lips are pursed, and her hands are more stiff, and I feel the big eye of disapproval making its way to me. 
I have no idea what possessed me.  None.  I have no idea how the filter from my brain to my mouth just chose that moment to open.  But it did.  And in one fell swoop, I said, "Well, I am certainly sure of one thing, lady.  You're an asshole."  And I grabbed Ellie's arm and shooshed my kids out the door, bags in tow.
I am mad at myself for a couple reasons.  I used bad language in front of my kids, which is not the model I should show and I feel terrible about it.  I could have used the opportunity to teach this woman something about spectrum disorders, but just couldn't.  In that closed moment, when all I sensed was an attack on my child, I could hardly focus on the didactic.  And now she's going to go to bridge or Red Hats or whatever she does and say, well, whatever is wrong with those kids, it's all the mother's fault.  I can't help it now.
But she was an asshole.  And pretending that I didn't say it isn't going to make it any less true.  So shame on me for swearing, but double shame on her for judging.  I think I know which is worse.