Wednesday, September 1, 2010

Diagnosis Imitating Art

If we hadn't left New York, it might have taken much longer to notice that there was anything clinically atypical about my son.  I would most likely still be teaching part-time at the university, during which time my son's babysitter, who lived around the corner, would be looking after him in our home.  There was a private preschool in our old neighborhood, but it probably would have been too expensive for us; and our district school (New York has a complicated system of decentralized school districts, the result, in part, of the Ocean Hill-Brownsville teacher strikes in 1968) did not have Pre-K.  It took experienced teachers in the preschool he began attending in our new city to alert me to the fact that he might not be developing typically.

My son was a late talker who spoke only about five words before he was two.  I enrolled him in a language study conducted by a doctoral candidate in speech-language pathology at my university, who ran a full battery of tests on him and concluded that "he's just one of those kids who's a late talker and we don't know why."  I did not sign him up for Early Intervention because he began talking exactly on his second birthday, and in three months was speaking in complex sentences with clauses and antecedents.  His potty-training experience was similar:  he started late, but mastered it almost immediately.

The speech-language pathologist ruled out autism for my son, because he made great eye contact and his cognition was clearly unimpaired.  However, I had noticed unusual things about him as a baby and toddler:  for instance, he never had the tight grasp on your finger that most infants have (my woo-woo homeopath and former friend claimed that he didn't need it, because he felt so at home in the world; whatever), and he didn't point at things until he was almost three, though he did indicate things in other ways.  He also avoided drawing and cutting activities like the plague, so I didn't push him in those.

We started the evaluation process in March of this year, and my son was given an IEP in June.  He's going to be attending an integrated Pre-K in the fall in which there are four teachers in the classroom, and half the students are typical and the other half disabled in various ways.  But he still doesn't have a diagnosis, just a collection of symptoms and behaviors; he will not get an official diagnosis until he sees a developmental pediatrician in October (the appointment was made in May, and we will have to travel over a hundred miles for it).  Nonetheless, reading between the lines in the evaluations, I anticipate a diagnosis of Asperger's or another high-functioning autism-spectrum disorder, which I confirmed with my son's occupational therapist.  In some ways, he is absolutely textbook for Asperger's, and, in addition to his delays and behavioral problems, he also has certain prodigious gifts, which is not unusual.  I am anticipating that after kindergarten I will be homeschooling him, because I fear that there is no school program we can afford that can teach to both his gifts and his delays.  Public schools are required to address disabilities and provide growth for students who demonstrate them, but not to provide enrichment if those same students also exhibit giftedness; private and parochial schools are not required to do anything for children with disabilities.

I really only started suspecting Asperger's last spring, however, when I picked up the book Tobin Learns to Make Friends, by the Northern-Ireland-born social worker Diane Murrell, from a library book display.  The book is about a little train (trains are a common obsession for kids on the spectrum) who exhibits classic signs of Asperger's, and has various scrapes learning the rules of making and maintaining friendsips with other trains.  I cried when I read it:  In the stories of Tobin's misadventures and difficulties with his peers, I might have been reading about my son.

And then, on Retired Waif's sporadic blog, I read about an unfortunate incident that sent shockwaves around the autism blogosphere earlier this year, when Smockity Frocks, one of those funny, witty, self-deprecating Christian-mom-of-many bloggers, wrote about her trials at the library one day when a little girl my son's age was behaving very, very badly and the child's caretaker did not respond in the way that Smockity thought she should have.  Smockity's truly cruel mockery of a child obviously on the spectrum made me cry again, because, once again, that stimming, perseverating little girl could easily have been my own child.  And even worse were the congratulations of most of her commenters, and Smockity's defensive response to the ones who suggested that the girl might have autism and that Smockity might have shown a bit more sensitivity (not to say charity) towards difference (after the ensuing pile-on, Smockity took down the post, but it can be read in cached form here).

Because of all of this, I'm in some ways very glad that we have moved away from New York, in spite of the fact that there is a much greater variety and amount of services available to children with disabilities there.  In New York, I would have been far more caught up in teaching and scholarship and my other historical concerns, and it might have taken me even longer to cotton on to the fact that my little boy has some special needs.  And I'm extremely grateful to Retired Waif for her friendship back when we were neighbors in the Bronx.  She's a gifted scholar and an excellent person all around, and l have learned a great deal from her approach to disability.

16 comments:

mrsdarwin said...

All right, I'm gonna say it: even if the little girl in question was simply spoiled and not autistic, Smockity's post wasn't remotely funny or charming. And the opening comments reminded me of how irritating I find it when a blog gains enough traction that it has hordes of fawning followers who worship every little jot and tittle from the inspired scribe.

marie therese 1 said...

Today I dropped my nephew, who is an Asberger's 'survivor', off at his second year Chemistry class at the local college. He is brilliant, charming, adores his family...and a wonderful young man. You know why? Because my sister fought like St. Joan of Arc for him, got down and dirty for him, and WON...she NEVER gave up hope...and she let him be his own man...and if anyone thinks it was easy...ha! I have nominated her as Saint of the decade. Mary

The Cottage Child said...

Gosh, where to start...I read the instigating post and a few of the rebuttals, including the one you linked, but I wish I hadn't read any of it. From insufficient parenting to the accusation of ableism, I'm not clear on how any of it serves. It seems to me there's an issue of how we view children in general, and in particular children other than our own SweetKissyLips. But that's a whole other conversation.

You should know that people come to me for parenting advice, as my own delightfully average children are sitting down to breakfast at 10ish following a rerun of Curious Jorge (hey, at least it's Spanish, si?)...that said, I'm embarrassed to admit I used to be one of those parents who would have silently seethed at the offending/poorly behaved/perhaps developmentally different child as she carried on whatever behavior it might have been. And I would have assumed the worst of the Grandmother, much like the blogger lady did.

And then I saw how entirely unattractive and counterproductive that is to raising healthy people, when my own children dared to behave like children, participating in egregious activities such as taking up space in the grocery store, or participating in some singularly adult activity as, say, Church. The judgement is swift and harsh, to be sure. I wish all of us, Moms and otherwise, could just take it easy on each other.

I spend a good bit of my time ignoring bratty ill behaved adults,
I don't see why it's become some kind of art form to be admired when we simply ignore the bad behavior of other people's children - particularly when we have no insight to understand what the problem may or may not be. Maybe some flapping anxious kids are brats - is thinking ugly things about them going to make them less bratty (it's definitely not going to make an autistic child less autistic)? I don't know, maybe an unexpected turn at computer game/swing/seat in the pew would open a window. Bratty people are generally unhappy, after all, and maybe kindness would make everybody feel better. I can't imagine what it might do for a parent who was just trying to do the best they could by a child who doesn't have the ability to discern these situations by himself.

I've taken up lots of space in this rambling comment, but I appreciate your thoughts and writing and topics very much and wanted to let you know. Be well!

Pentimento said...

Perhaps I was wrong to link to Smockity's googled-cached post, and perhaps she was right to take it down. I can't read her heart, but I imagine that she may have come to the same conclusions about her thought processes vis-à-vis other people, Cottage Child, that you did.

That said, no one can dispute that there is an explosion of autism-spectrum diagnoses among children -- the rate has gone up, by some estimates, by around 6000% in the past twenty years. Gerard Nadal (http://gerardnadal.com/), the father of a child on the spectrum, believes that this is because we as a society must be transformed by learning to love in a different way. This seems to me to be the crux of the Christian challenge -- truly loving those who are the most repellent or least lovable to us.

mrsdarwin said...

as my own delightfully average children are sitting down to breakfast at 10ish following a rerun of Curious Jorge (hey, at least it's Spanish, si?)

Hey, that was my morning, except that we watched Princess and the Frog instead...

I think that the way we learn to love others is by being exposed to behavior that takes us out of our comfort level, so that we have to put into practice the kind of charity that we usually only read about. Compassion requires that we understand that not everyone is just like us. After all, as Jesus pointed out, if we only greet our brothers, what merit is there in that? Even the pagans do as much.

The Cottage Child said...

I had an awful(ly) lengthy response composed that disappeared into the ether...all it really said was I am so sorry if I came across sounding other than supportive of children who might be "different" and their families...and of "average" families who are having a rough time of it, for that matter (Lord, hear my prayer). Essentially what mrsdarwin wrote (hi, mrs.darwin)

I find myself reading lots of things I wish I hadn't, clicking about just because the link is available. But that's on me - I did not mean to imply that a gal shouldn't post or link to exactly what she felt was relevant or meaningful on her own spot. I could have kept the rest of it to myself. I'm sorry if I sounded ugly.

I'm a huge admirer of Dr. Nadal's. Thanks for sharing THAT link :).

Enbrethiliel said...

+JMJ+

This kind of makes me happy that I don't really read "mommy blogs"--although I do read some blogs of those who are also mothers. =P

I confess that I feel a little sympathy towards Smockity Frock. I know what it's like to shoot from the hip on the Internet, thinking that only a small circle of friends is listening or even interested, and then without warning, going viral. In Smockity's first defensive explanation (before the apology), she said that people who had never read her blog before shouldn't think they know her character because of one post that a blog they do read introduced with some angry words--which is kind of related to the point that one shouldn't judge someone's parenting by a single public encounter with a child who seems to be misbehaving badly. I think her post and subsequent comments just made her an easy scapegoat.

Having said that, I don't like her, either. =P And, well, given her typical "mommy blogger" advertisement-heavy layout, I can't feel too sympathetic: hits mean more to her than friendly visits; they can also add up to real revenue.

(I'm dividing my comment in half because I've had bad luck with long comments and Blogger lately.)

Enbrethiliel said...

+JMJ+

Continued . . .

Still, I know that the real issue here is that many people do not understand disabilities like autism (or like Tourette!) and chalk them up to bad parenting because there doesn't seem to be any other cause. Which implies that parenting is all about cause and effect, and nothing more. (Or to borrow Smockity's own baking metaphor, all about correctly measuring the right ingredients into the pan.)

If only it were that easy, right?

For some reason, a line from one of my current reads, Charlotte Bronte's Jane Eyre is coming to mind: "Do you think I am an automaton?"

Pentimento said...

No worries, Cottage Child, I took no one's comments amiss.

From what I gather, some people sent very mean personal messages to Smockity, which was probably what she was referring to in her apology when she said she'd been slandered.

Enbrethiliel and Mrs. Darwin, perhaps you have a point about the popular-mommy-blog ethos. I think in a way the whole incident is an illustration of what makes us, to quote Nietszche out of context, "human, all too human." I have to say it's a huge object lesson for me. The woman was reading her Bible, after all, while thinking the worst of a little child and grandmother right before her eyes.

But Smockity's lack of autism awareness, not to mention her lack of charity, or her lack of restraint in writing a post about it, don't make her particularly egregious or special. What she did is human nature. Unfortunately, the popular-mommy-blog ethos and the anticipated response of her fans, probably inspired her to think that posting a clever story about her experience would gain her accolades and approval. She clearly was not expecting to be accused of insensitivity when she was just trying to be funny and make contact with her like-minded blog-readers.

That said, it has been my experience that parents of neurotypical children generally think that my atypical child's odd behavior is the outcome of my own shortcomings as a parent. Again, human nature. We are invested in thinking this way about everything, because if autism, or any other unfortunate thing, just HAPPENS, then, well, it could HAPPEN to your kids too. By telling ourselves that bad behavior is the outcome of bad parenting, we can assure ourselves our kids won't catch it.

I don't want to have to say "He's on the autism spectrum" to the people who criticize me in public for my son's behavior, because it seems aggressive and defensive. But sometimes I do.

Anonymous said...

Your blog post, the blog to which it linked, and the wonderful comments here make me very glad I read them all. As a relative of a family which is struggling mightily with this type of issue and living through it with much devastation and little joy, it has been a very thought-provoking window on daily life and the frailty and pain inherent in each sorrowful step.

"Pick up your cross and follow Me..."

Enbrethiliel said...

+JMJ+

Pentimento, I recall that you once mused that mommy blogs can be like porn--and now that I'm been to several of these, I'm starting to see what you mean. The most popular mommy bloggers seem to be raising such perfect families, with nary a crack or a blemish on the image they carefully present to the world. I suspect Smockity became a lightning rod not just for all the pent-up frustration from parents of atypical children, but also for a growing suspicion that mommy blogs are the new whitened sepulchres.

Pentimento said...

Oh, Anonymous, I will pray for you and your family. Hugs to you.

Oh yes, Enbrethiliel, I still stand by the assertion that Catholic (and Protestant) mommy-blogs are like porn in many ways. But as a mother, I have to say that I think most mothers who read them are, like me, secretly afraid that we don't know what we're doing and worried that we are botching the whole enterprise, and we look to the perfect mommy-bloggers with a kind of awe, forgetting that they are undoubtedly not blogging about what I can only call the literal and figurative sh*t of the everday. I know I've mentioned this before, but it reminds me of the old (and by now much-quoted) New Yorker cartoon that shows a dog at a computer keyboard, turning around to say to the viewer, "On the net, no one knows you're a dog."

Enbrethiliel said...

+JMJ+

*discreetly adjusts flea collar*

Oh, indeed! =P

On a related note (if that metaphor makes sense to a musicologist!): Pentimento, a few weeks ago, I blogged the casual comment, "When you see the child, you see the mother," based on my experience with the (neurotypical) children I tutor. And now I realise that such a black-and-white statement requires more qualification when a child is on the autism spectrum.

I didn't mean it in the sense of divining who the "good" and "bad" mothers are. But I do think it is possible to see the mother's "style" in her child, even if we can't appreciate the style because we don't know the whole truth about the child.

Pentimento said...

I'm adjusting my own flea collar as I type . . .

I'm not sure if that axiom holds even for NT children, Enbrethiliel. We would wish it so, but, while we influence our children, we have no real control over who they are, even down to their "styles." (And we never know the whole truth about anyone, do we, hence the cartoon.)

mrsdarwin said...

The funny thing about children is that while sometimes you see yourself in them, they can also throw you for a loop by exhibiting traits that come out of nowhere. This is why Darwin and I are so flummoxed with our tantrummer: we don't know where it came from, and we don't know how to deal with it from experience. We're right at home with our lazy super-reader; that's definitely an inheritance from mom and dad.

Enbrethiliel said...

+JMJ+

Mrs. Darwin: My mother used to give me the "Did this alien creature really come out of my body?" look all the time! LOL!