Altered States

My first visit to the reproductive endocrinologist was not promising. He peered at us over his glasses, reviewed the lab and ultrasound reports and gave me about a ten percent chance of conceiving. It was the first time it really hit home that I might never bear a child, and I was stunned and distraught. But we stuck with it, and after many courses of fertility drugs and, finally, in vitro, we got our miracle: a tiny, pulsing being about the size of a sesame seed.

We did quite a bit of genetic screening: some, because of what the world of obstetrics so charmingly refers to as "advanced maternal age," and some based on certain ethnic risk factors that my husband and I both carry, plus a slew of other genetic disorders that I didn't even know existed. I was a model patient: I passed all the the tests.

Around that time, a friend of mine got pregnant.

"When's your amnio?" I asked her casually one day as we were shopping for baby gear.
"I'm not doing one."
I was stunned. "You're not doing an amnio? But...don't you have to?"
"Nope."
"But..." I didn't know how to phrase this. "What if, you know, something...?"
"Susan," she said. "I'm having this baby, whatever and whoever it is. So screening is moot."

At the time, I remember thinking what strength of character it took to know to such a certainty that you would love your baby, no matter what complications fate might throw your way. Of course, she knew what she was talking about--this was her second child. For me, it was all still purely hypothetical.

***
I was worried about autism early on. Fixated might be a better word, actually. But I'm an anxious person, which paradoxically reassured me that my neurotic concerns were really nothing to worry about. (If that last sentence made any sense at all to you, congratulations! You're as neurotic as I am). I worried about Isaac's startle reflex, which seemed so delicate. About the fact that sometimes he would shake his head from side to side when he was having trouble latching on. I worried that he couldn't seem to get the hang of a pacifier (but ultimately found his thumb, which thankfully never got lost).

I remember asking the pediatrician about the head-shaking. "It just means he's disorganized," he said. "He'll get there." In retrospect, I think it was a sign. And the pacifier? Oral motor--a big issue for Isaac. So yes, I think there were some early indicators.

***
Which leads me to my next question: in the multitude of tiny, transitory and sometimes bizarre things that young children do, which are meaningful, which are temporary, and, most importantly, what, if anything, should we do about them?

I've posted a lot recently about Isaac's latest developments. He's been so great, engaged, talking more, all that stuff. Sometimes I feel so confident that he's opening up, unfolding almost, that it takes my breath away. But, truth be told, I also see more rigidity and more perseveration. He needs to make sure doors are closed. If you're in a room together and turn a light off, he wants it back on. Immediately. I don't think he cares about the light particularly; it's just the altered state that bothers him.

Then there's his obsession with elevators (you would not believe the number of people who film themselves riding elevators and post them on YouTube. Or maybe you would, because you're reading this. It's a whole subgenre.) It feels like a fixation, a compulsion. Is it a sort of Aspergian special interest? I really don't know. But the intensity and repetitiveness of it concerns me.

And then I remember: he's four and a half. There is a lot to be worked out yet. But I wonder if in three or five years I'll look back and see the outline of something that is just now beginning, and whether it'll be familiar, and whether it'll be allright.

Comments

[kyra]

four and a half. SO much yet to come! and i say that at this ripe old age of watching my almost seven year old!

i have complete confidence in you, in dear Issac.

[niksmom]

Okay, oddly enough, that sentence about the paradox made COMPLETE sense to me. LOL

I think that no matter what comes down the road, you will handle it fine. Sometimes we see early indications of future "issues" and sometimes, well, we just see phantoms of our fears which may really be "normal" in the long run.

You love your son and strive to do what is best for him. The perseverations? Remember that he is four and a half; most kids that age have some sort of hyper-focus as a means of controlling their environment.

Have you tried giving him advance warning that you are going to turn out the light and told him what will come next? Easier said than done, I'm sure, but it might be a worthwhile experiment to see if it's really about the lights, about the change, or about control. Ask *him* to turn off the lights before you move on to "X?"

All will be fine. Isaac is who he is and he's wonderful. But you already know that. :-) xo

[kristen]

Oh Susan, not only did I GET the convoluted sentence about your neurotic concerns, I GOT all of it. You could be writing our story. Speaking from the perspective of a year or so down the road from where you are, it does get better, some of it fades away, some of it becomes brighter, clearer, and, while it's not a comfort, there is always something new.

Sending you and your sweet boy a hug. And a smile, because in the end, none of this really matters. He's your sweet boy. And you love him. And that will carry you both through whatever is to come.

[Good Fountain]

Susan, I understand this all too well. When I look back at Chee's first couple of years, I can see now what were early signs of her SPD and her Language Delay. Now when I see her doing something that could be out of the ordinary, I want to call every mother of a 3 yr old that I know and ask, "Does your kid do this? Is it normal??"

I believe there's a fine line between what's typical and what's not and us Moms are saddled with the task of figuring out when to worry and when to enjoy. Mostly I try to enjoy. I try.

[Special Needs Mama]

I think that everything we observe in our kids is a sign of things to come, but as parents of SN kids, we only observe the things we suspect will become problematic. Yesterday at the park, I noticed Evan listening intently to some older boys who were playing next to him. They were rough and tumble kids and I could picture, in Evan's attention, the fact that he would become the same, somehow. That he wanted to be that way.

Of course my next thought was, "it won't happen." And then I realized, "it very well might."

For every future challenge, there is also a future shift and change and something we never thought could happen. You just don't know.

[Christa]

Our YouTube sub-genre: homemade Thomas videos. What did parents with kids on the spectrum do before YouTube?

I also wonder about which moments represent something meaningful and which are simply random behaviors or passing phases.

The great thing about your writing is that, while you don't know that now, you have this amazing record to look back on later and see Isaac's development in context: a context that's hard for any parent to see when we're just simply getting through the day.

[Emily]

You know, I think there are plenty of "typical" 4.5 year olds who exhibit similar behaviors, from obsessions with elevators or escalators to having doors or lights "just so." Sounds like Isaac's just a more intense version of these. Since this age group can be more intense in general, I'm thinking that come age 5, 6, 7, you're going to see some big changes, changes toward maturity and "growing up," just like any boy would exhibit. Seems like Isaac will always be intense, but I do think that age mellows some of that...at least it has with TH and with Will, who was our "must be just so or else" meltdown boy for a long time. TH's old obsessions...our thing was to spend hours looking at pictures of nuts, especially acorns, on Google images...are not there any more. He still likes a good acorn, but we don't pore over pictures of them on Google. As others have said, you've got changes ahead, and not everything you see now is a harbinger of the spectrum. Some of it's actually at least in the boundaries of regular 4-yr-old boy behavior, some of it sounds like very smart 4-year-old boy behavior, and some of it will diminish with time, I'll bet.

Having a sense of humor as a strong point is a positive augury, in my opinion.

E

[Karen DeGroot Carter]

It's ALL going to be all right, Susan. Promise. K.

[drama mama]

I own 327 lipsticks.

Is that a perseveration? Obsession? There is no YouTube for my subgenre.

Ebb and flow, honey. With my daughter, each developmental progression coupled itself with some sort of funkiness that made me scratch my head and sweat a bit. But as all of the wise comment-sages before me have said, he's your boy, and at the end of the day...
he's still your boy.

[Rachel Norton]

I think increased rigidity is sometimes a side effect of a child's developing more awareness of what is going on around him. Kind of a control thing, you know? So I think you are right to be watchful but I think it is a good sign.