cure?

Talking with Brendan tonight, I realize how difficult it can be, navigating the autism community. Parents are hit with so much information - the latest nutrient, the newest therapy, try this, see Dr. So-and-So who's all the rage, you haven't tried this yet?, cure, cure, CURE. It's hard to keep track of, and can be in turns inspiring and frustrating. DAN doctors cost a lot of money, and there are promises of CURING autism to back up the hype and the hope.

Don't get me wrong: many many kids are "cured" from autism through relentless pursuit of new therapeutics, and lots of doctors have found amazing research to support the search for a cure. Many kids have been "saved" and helped. I read these amazing stories and I cry and cry. Happy for the families, ashamed at myself for not being relentless enough, hopeful for the future, and then disappointed in myself all over again.

But then I think about the polarization of acceptance and cure. Of course we all want our kids cured from autism, from the frustration they must feel, from the hardship they will face trying to live in a "typical' world. But if there is such major emphasis on curing the disorder, what is lost in the day-to-day interaction between parent and child? Some families are hell-bent on hours of habilitation, ABA therapy, biomedical interventions, etc. etc. and monitor the kid relentlessly to track progress, setbacks, etc. I am all for this, but what about accepting the kid's quirks? Instead of thinking "bad" and "good" days - setbacks and progress - "regress" and move forward - what about simple questions like: is my kid happy? is he more open to new routines? have I told him i love him enough today? given him enough hugs to let him know " I am happy to see you - I missed you" when he gets off the bus?

That's what I did today. Liam's face lit up when he saw me, walking down the steps from the bus, so I picked him up and buried my face in his neck. I told him how i loved him, how glad i was to have him home, etc. he kept saying "hi mommy" and patting my head, held my face back and looked straight in my eyes with a big smile. I felt my heart lurch with love before i let him go.

And then tonight his routine was shattered: we went to Baja Fresh instead of the usual Friday night "date night" routine of Chipotle (which we have been doing every Friday, give or take, for the past four years). He tolerated it like a champ. Then we went to the mall play area, as per usual, and he tried to kiss a girl. Had a blast. Usually we end the night by getting him a Disney book or movie from Barnes and Noble, to add to his collection.

Well tonight, I thought that we should break up this routine, so he doesn't start to feel entitled to a new gift every single week.

Poor kid. We walked through that store to get to the van, and he just lost it. "OH NO RED DISNEY BOOK! I NEED THE RED DISNEY BOOK!" over and over, a look of pure sadness on his face. He varied his tirade out a few times, with "time for school tomorrow" and other such things - then he'd go back to "red disney book please." It was heartbreaking, and then I started to question myself all over again. Who cares if he feels entitled: it's not like he is obsessed with material things for their own sake - it's part of his routine, his comfort. Brendan was right in saying how Liam was naming things like "first school - then speech - then swim lessons - then chipotle" etc etc to try to reestablish control over what he wanted. We stuck to our guns, and he went to bed sad, with the "green disney book" from last week next to him.

It is so hard to navigate: establishing discipline and limits, getting him used to "new"routines, and also letting him have his quirks and comforts. I am proud of him for how he adapted tonight, and I willed myself not to question my decision OR get upset about how he is not yet "cured" of his tendency to fixate. This is HIM, from his loving cuddles this afternoon to his sad outburst tonight.

I hope to one day find the balance between hope/cure and acceptance, and not limit myself to always thinking in absolutes. I believe that with love and guidance, diet and nutrients, and both of us trusting our instincts, Liam will continue to thrive and find his own place. And forgive me for muddling my way through it.