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Wednesday, August 11, 2010

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.

Saturday, August 7, 2010

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.

Monday, August 2, 2010

the 3 year toilet training study

We started putting Ellie on the toilet when she was about 30 months old.  I know people who have trained 19, 20 month old toddlers,but Ellie never showed an interest, and with two other kids in diapers, changing one more kid wasn't that big of a deal.  But then she was three, and nothing.  She had already been diagnosed with PDD-NOS by this time, and the developmental pediatrician and all the literature said toilet training was a difficult skill for kids to learn.  I didn't push it.  She didn't need to be trained for school, since her IEP would cover her in diapers, and the preschool is licensed to manage toileting needs.  And then she was four.  And nothing.  And meanwhile, all my friends' kids were completely self-sufficient, in underwear, able to travel.  And Ellie still needed complete care....not to mention her anxiety about the toilet.  She was so terrified.  So absolutely unable to care for herself and terrified to try.  We tried therapy with Dr. Cunningham...but her method, while helpful for some kids, did nothing for Ellie.  We spent 10 weeks last summer doing her program, and nothing.  (Helen got potty trained, so that was something in the big picture).  And then we were staring down five, and kindergarten, and the fact that there was no physiological reason for her not to be trained.  It was all anxiety, and "used to" habit, and her need to be cared for in that very personal, very tangible way by me. 

The need for Ellie to manage her own toileting became a paramount importance.  We consulted with Dr. Bardenstein in Cleveland Heights, who uses a play method therapy to inure resistent children to the idea of using the toilet.  We worked with her for several months, weekly.  Her program is slow steps, set to the child's pace.  With Ellie, it was just getting her to hold toilet paper.  Then a wipe.  Then sit on the toilet.  Then sit on the toilet longer.  Then put her on the toilet regularly, and wait.  And then, the diapers disappeared.  And I tore up the carpet in the living room.  And I went through 40 pairs of panties.  And 5 boxes of Oxyclean.  And 5 bottles of Mrs. Meyer's cleaner.  And I cried.  And she cried.  And I got told time and again, "Ellie had an accident."  And school was hard.  And camp was hard.  And I know she tries.  And I sometimes can sweep it by, and not get upset, and say "it's okay, it's okay," and then sometimes it's all I can do not to beat my head against the sink while I clean her up, again, and sanitize the house, again, and wonder, will she ever do this?  Will I ever not do it for her?  Will I be able to take her anywhere without worrying, do I have wipes?  Do I have extra panties?  Do I need to always listen for that feral sound in her throat, watch for the rigidity, as she has no control over her body, as mistimes her reaction, and murmurs, in her flat voice, "I had an accident, an accident." 

I really can't listen to breezy, pretty mothers spin tales of "struggling" to potty train their 24 month old typically developing children.  I want to smack them and say, this isn't a struggle.  This is just a child who isn't ready.  My experience has been three years in the making.  Three years.  It took from me, and it took from Ellie.  I have never felt more judged, more misunderstood, more alone, than in trying to accomplish this for Ellie, with her.  A few stood by me, supported me, and they know who they are.  And without them, I would not even be able to crystallize this experience in language.  They saved me.  And hopefully, through their love, I saved my child from a lifetime of dependence and disability.  I hope I gave her confidence and esteem.  That's all we can do for our children.  That's all we can do for each other.