Many a member of the chorus of autism bloggers has been sounding the same note this week: A child in meltdown and "stuck" and unable to sleep perhaps due to the transition from winter to spring and the changes in the light.
It seems that, though many of our kids' systems seem to be out of whack, they have all managed to be dysregulated in their several ways at the same time, in a sort of dissonant harmony; in symphonic discord. In diverse similitude.
Not being any sort of scientist, I've no hard evidence and no ability to back up this theory with more than anecdotal observations; our antidote has been to redouble our efforts to cognitively challenge Charlie intensively in his learning, at school and in his home ABA sessions. Being a classicist--a teacher and a student of "dead languages"--my mind turns to myth, to the story of Demeter's loss of her daughter Persephone, snatched away under the earth by Hades. When--after an agonizing search all over the earth--Demeter finds her child, she has become Hades' bride and cannot ever fully return to her life before, as she has eaten a few seeds of a pomegranate. The myth accounts for the origins of the seasons: Spring and summer are when Persephone is with Demeter, who makes the crops grow as her own joy flourishes, and autumn and winter when Persephone is down in the Underworld and the mourning Demeter sends barren blight upon the earth.
Persephone's ascent back to the light of the world must not be the easiest of transitions. Indeed, the myth can be read as an allegory for an autism parent who sees a lovely child cycle in and out of great days and days of ache when so much good learning--such progress--seems lost.
It was a year and some days ago that Charlie fell into a regression that he and we spent the rest of 2005 clawing our way out of.
Last March I had enrolled Charlie in a social skills group at the center where he now does his verbal behavior sessions. After a few weeks, it was suggested that Charlie was not ready for the social skills group and that it would be best to concentrate on one-on-one therapy. This was definitely the right decision at the time; we then added even more one-on-one time when we restarted Charlie on a home Lovaas program in September 2005. Those five weekly therapy sessions, combined with a couple of speech therapy and OT sessions and (starting in December), Charlie attending an ABA/autism school, have all contributed to pulling him out of the sadness of regression to the sweet gains of progress: Learning to read! Spontaneous speech! Talking clearly! Using the fork to eat! Peaceful and happy and connecting with eye contact and playing catch and so emotionally attentive! And so much more.
"Regression" and "progression" share the same Latin root word, gradior, gradi, gressus sum, "walk, step, go." The prefix re means "back, again" (as in return); the prefix pro means "before, in front of" (as in prologue). So if 2005 was marked by Charlie sliding into a regression, 2006 has so far been one of advancing in slow but steady progression.
Warmed by the 66-degree sun and welcoming Charlie and Jim back from a five-mile bike ride, I decided it was time to ask about Charlie participating again in a social skills group. He has been making wonderful gains in his verbal behavior programs and, at school, in the social/peer skills programs with some of his fellow students.
When I made my inquiry at the center as Charlie ran into his session, I discovered that the set-up for social skills groups had changed. The afternoon session is now for kids up to 8 years old who are "more Asperger's"; the morning session, whose focus is on more basic social skills, is for kids aged 3-5 years old. Charlie's skills are more at the level of the younger children but he is, of course, a good 5 years older than many of those kids (and he is big for his age). He would, I think, be better placed with children his own age and it seems to me that, between his home program and school, we can teach him the sort of skills he might need to participate with the older children. I asked his VB therapist to consult with the VB consultant and we shall see.
But where are the other almost nine-year-olds who, like Charlie, have minimal but ever-progressing speech? Who have had to work their way through massive behavior issues? Who are not ready, may never be ready, for mainstreaming in school? Is Charlie so out of sync, so at some extreme end of the autism spectrum?
And as soon as I found myself thinking all this, I said to myself: Charlie has his whole life to learn. There is no age cut off; there is nothing magical about "five years old" and kindergarten, or "turning eight" and not yet knowing how to read and still talking in mostly one-word utterances. When that earthquake wrent the meadow where Persephone was dancing with her friends, how many milestones were dislodged? Living in Autismland is all about being up to your knees and nose in the dirt, mud and maybe the compost, where it's kind of hard to smell the roses. Demeter got her daughter back, for the price of losing her for half of the year.
Those wages of autism can seem like some pretty funny money.
And maybe the joke is all on me, mistaking playing in the dirt for panning for gold. Charlie had a glorious day, riding around in the black car with Jim (after the bike ride) to run errands (the carwash and the dry cleaner's) and, after "buh-eetohs!", listening to song after song on his iPod. So I found him listening, hands to his sides, intent to the dissonant notes of a jazz violinist, Don Sugarcane Harris.
Charlie looked me right in the eye.
I was interrupting his careful listening of music--of the musical language that is perhaps more familiar to Charlie. That is Charlie's.
Wordless, I went back downstairs, savoring the sound of progress.