Before I started blogging in August, I kept a computer “journal” of sorts, wherein I jotted notes of how we were doing, in case I ever did want to start documenting the process. I haven’t opened that file since early August. This morning, however, I dug out the relevant USB storage device to search for a few paragraphs I remember drafting on the topic of maintaining friendships. (Look for that post for later in the week.)
My readers know I’ve been frustrated lately, feeling stuck. Reading what I wrote earlier this year provides perspective. These entries, from my own journal, stunned me:
4/20/11. Parent interview at [Big Imposing Hospital]. Martin’s scores range from 1st percentile fine motor skills to 97th percentile school readiness (letters, numbers).
4/25/11. Martin is not as good as he was over the weekend. He’s a little out of it. In the late afternoon, after Samara leaves, he becomes fussy, whiny, irritable. Finally, just before 6:00 pm he has massive foul diarrhea, and I recall that he has not pooped since Saturday morning.
4/26/11. Martin isn’t having a great day. No desire to work with [his ABA therapist]. [His PT] calls him “weak.”
4/30/11. In the mail come [the Track Two doctor’s] notes from our call. Among them is written, “Mother getting discouraged.” I’ve got to do a better job with keeping upbeat.
5/1/11. Take Martin to church with chips, books, toys. He hides under my maxi-dress, and his seltzer with kombucha squirts all over newcomer in front of us. Throws a tantrum leaving church. [A friend] patiently holds my purse and his bags as I strap screaming child into car. Then I shut door and—silence. He’s locked inside. [My friend] nods in salute to the silence and hugs me.
5/2/11. Martin is hot in defiance phase. Hates every change. Doesn’t know what he wants. Refuses even what he loves, like coconut oil.
5/3/11. At 7:40 pm (during bedtime) he unloads three days’ worth of poop, mostly undigested food. I consider the irony of seeing my carefully prepared concoctions emerge from the other end in more or less the same form.
5/6/11. Through the grapevine I hear about a typically developing playmate of Martin who has not succeeded in getting a pre-school placement for next fall. She will stay at the New York Kids’ Club instead. I feel some schadenfreude creeping in. I tell myself that under the circumstances, schadenfreude does not make me a bad person. At least, not that much.
5/9/11. Horrible bedtime. Martin is so worked up, and he fell asleep on the school bus coming home. For the first time in weeks I have to restrain him. He struggles and cries. I miss a business call at 8:00 pm.
6/6/11. A disaster of a day. Martin is awake since 1:40 a.m. He is miserable, whining, crying all day. [His babysitter] cannot get him to nap. Nor does he sleep even in the school bus. I am running on two hours’ sleep. Call with Kathleen is unfocused, wandering. I express doubts. I wonder if we’re making progress. School report says Martin was in “more of a daze than usual” during circle time.
It’s November now. Martin sleeps, eats, and poops well. He engages in only limited self-stimming behavior, such as running back and forth. He walks heel-to-toe. He possesses sufficient body control and proprioceptive awareness that he rarely stumbles. My big complaints these days are continued poor attention, especially in group settings; echolalia and language delay, including the inability to ask questions; and fussiness when we deviate from plans or Martin doesn’t get what he wants.
I’m finding it helpful to recall the days when I had to worry about screaming fits, inability to sleep or digest food, and a craving for secure space that had Martin hiding under my dress.
I’m finding it very helpful.