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.

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.

Choices had to be made

I decided to discontinue writing to what had been my "main" blog because it simply ceased to serve a purpose for me anymore.  My life has changed dramatically since I started blogging and I find that I have much more meaningful writing to do about parenting a child on the spectrum than merely blathering on about whatever else I have going on.  So I hope to write far more in this forum and share more deeply what this parenting experience has meant for me, changed for me, changed in me.  This is where I need to be right now.  Hope you go along for the ride.

No eyes averted

One thing that is so difficult for children on the spectrum to manage is eye contact.  It is one of the first signs that a child may have an ASD...the constant aversion to making full and appropriate eye contact with another person, even a parent.  There are many days where I don't get a lot of eye contact from Elenore, even if I ask her for it.  I accept this because I think maybe the intensity of eye contact is just too much for her.  Cameras are especially problematic because it is essentially one big eye bearing down on her demanding her attention.  She just doesn't often know what to do with it.  But lately, since camp started really, she has been approaching others with a very open face and a willing smile.  Her social cues are much more functional than they ever have been.  Here, she grabbed a silly set of 4th of July deelyboppers and stuck them right on her darling brunette head.  I had to get it on camera...and she rested her hand comfortably on the counter and said, "oh, smile!"

I think the result is perfection.

Our Mall Meltdown, or, The One Where I Tell Smockity Frocks Where to Go

Before I address the completely understandable furor surrounding the now-infamous (thanks in large part to my friend Stork Doc) Smockity Frock's blog posting (see also www.squidalicious.com page for all the links, including the original now deleted post) I want to detail the now-infamous "Nordstrom Meltdown of 3/26," since it was as bad as it could possibly get, and we still survived. In short, all the girls needed shoes. That means they needed their feet measured, and Rachel Klein, aside from being a top-notch sales professional, is also highly sensitive to Ellie's sensory issues. She neither dilly dallies in measuring her nor puts her in a position to feel threatened or uncomfortable. The shoe adventure went fairly well, considering Lelli Kellies were involved, and any mother of a young girl child knows the spell those shoes put on our progeny. It's like freaking fairy magic.

Anyway, the second part of our mall adventure was to have a snack by the fountain outside the store. Ellie usually is good about staying in her seat while I procure food, but the fountain is just. so. desirable. There's water in it! It's cool to the touch! It's like a mirror! People throw things in it! It makes a sound! She literally could not stay away from the water, and I could not both stay in line at the Cafe to order and repeatedly stop my child from pitching forward into the fountain and drowning. After the fourth time I had to leave the line sans provisions I asked the woman behind me to hold my place because I had a special needs child who needed immediate attention. Her response was, "If you can't manage your children in public, you have no business bringing them anywhere." Mind you, the twins were plopped in the seats, chatting between themselves, not causing an ounce of disturbance (except for Emma telling Ellie to "get your dupa in your seat"). My only response to this woman was, "I take that's a no?" A decision had to be made. I could see the whole picture, quite Gestalten, and understood that my only option under the circumstances was to evacuate the troops. The water was going to be endlessly tempting, the risk of Ellie falling very real, and the combination of the two too stressful for me to manage.

Herein lies the crux of our story.

Anyone who has a child with an ASD knows that transitions are hard. We prep our kids for transitions between events, we use picture schedules, PECS cards, verbal cues. We build in time for in-between time, emotional change-ups, travel. We run like Italian trains under Mussolini...we're dictatorial about the timetables, but dammit if things don't get done. Throwing things in reverse without proper notice is disastrous. I know this. I've lived in Autismworld a long time. The rules are tattooed in my brain. Yet even armed with this knowledge, I made a choice to remove Ellie from the attractive nuisance on a dime.

It didn't go well.

She threw herself on the floor and crawled back to the fountain. She kicked. She rolled. She pushed me away. She almost smacked her head on the ceramic tile edging between the mall floor and the fountain precipice. She screamed. She ran away. She begged me to let her put her hands in the water. She used every muscle in her 40 pound body to get as far away from me as humanly possible. Meanwhile, her sisters observed this with their own emotional responses (crying, clinging to each other) and stuck to me like glue. In the bitter end, 15 minutes after it started, I potato-sacked a four year old who is fully half my height through the store with four coats, three balloons, two other kids, a purse and a bag full of shoe boxes in tow, desperate to get Ellie into a small enough space where I could guarantee her safety from herself. Were it not for a former colleague at the Big N, Marshae King, stepping in like the professional mother of 3 she is to help me, I would still be there, by myself, struggling, hyperventilating, wondering if someone was calling 696-KIDS on me while clucking about bad mothering.

This brings me to Smockity and what she doesn't get. Clearly she has a fetish about behavior and manners. Good for her. I live in a please and thank you world as well, and my kids know it. Anyone, anyone, who has spent any amount of time with my children, from family to my friends (including my childless friends, male and female) note that my girls are polite, funny, and generally perfectly behaved by most three and four year old standards. Do I get my fair share of sass and pushback from my typically developing three year olds who are trying to find their independent place in the world? I do, especially from Emma, and as one of my best friends noted, "You're going to have to break that one like a stallion." This is what we want three year olds to do, despite how frustrating and exasperating it is. They need to fight us. This is how children learn who and what they are as individuals.

But what happened at the mall was not sass. It was not Ellie wanting her way. It was the sudden, unexpected, and wholly jarring removal of a sensory experience that I know her brain was telling her she needed by me, her mother, the center of her world, the one who is supposed to make all sensory experiences right. I know what water does for her. I have seen her whole body cave from ASD rigidity into amorpous relaxation as I pulled her around a swimming pool while humming in her ear. And yesterday, when I weighed in the balance her safety versus her brain's need to decompress, I couldn't in the moment justify the risk. There is no way to explain that to my child, to her sisters, and there is certainly no way to announce it to every looky-loo who judged me yesterday--and there were many--as they observed an overwhelmed 5'1" redhead chasing a competely out of control kid around a store.

Smockity doesn't get this, obviously, and I think it's partially what Stork Doc and the others posit, which is essentially that Smockity is a self-righteous jerk. I also think it's because she has only parented children who are typically developing (and seems to have had no contact with children who aren't). Smockity doesn't have to go through the very complex and intense process of looking at an undesirable or unsafe behavior, deciding if it's related to the ASD in some kind of sensory way (sensory seeking, sensory avoiding) and, if it is, assessing whether the behavior can, in the moment, be shaped into a more desirable option (is redirection possible? how, and how quickly? if not, what's plan B?) all while evaluating what steps need to be taken immediately to avoid a repeat of the behavior in that context. These mental shenanigans often take place in two minutes or less, tens of dozens of times a week. It would be easy, as Smockity does, to dimiss the behavior as "spoiled," "indulged," and whatever other modifiers she chooses, and immediately set upon punishing it. But it wouldn't address the real underlying issue, and hence deny both parent and child an opportunity to learn how better to function in a world full of Smockities who are ready to judge and reject, ostracize and humiliate.

I for one want to live in a world that embraces, loves, and values. So does Ellie. So do her sisters. I hope you come with us.

Why the Wakefield retraction matters to me, even if people are still idiots

So what I thought would never happen has happened....The Lancet formally retracted the Wakefield study. It did so citing a variety of methodological flaws in the paper, including issues surrounding the randomness of the subjects, ethical issues surrounding consent/assent, and poor data interpretation. Immediately the conspiracy machine cranked up, led in part by Jenny Mac and her band of nonthinkers, who allege that Dr. Wakefield's work is being suppressed by Big Pharma. There's really nothing to be said about Jenny anymore...she is a True Believer, and her science is her child. The rest of us, however, can sleep better at night knowing that somebody, somewhere, stood up and said, Enough. We have brains. Let's use them.