Help and Hope (#157)

“Hepp, hepp! I need hepp!”

Says Charlie, as he leans over a box that he can’t get the cover off of; as he waves around a pillow case that has slipped off a pillow.
“Hepp turn on!” Big silly smile: He’s sitting in front of his computer and wants me to click to another photograph I’ve put on the hard drive, pictures of him riding “ferris wheel red” with Jim last summer or “ferris wheel white” some years ago at the Mall of America, or “Gong Gong bue shirt” or “Mike Wucy red car!” (Charlie’s godparents, who visited last Sunday in said large vehicle.)

“Say hhhh. Say hhhheh Great job!” So Charlie’s home therapists taught him to say the word “help,” four years ago when we lived in St. Louis. “Say hhhehpp. Hhhelllpp.

“Hepp,” said Charlie. “Hepp.”

But teaching Charlie to say the word “help” was only part of the battle: Charlie also had to be taught to ask for help, and so we set up situations in which he could not do something–zipping up his coat, tying his shoes, heating up a snack in the microwave, opening a heavy door–and had to “use his words”:

“Hepp I need hepp. I need heh-pppp, I needeh-ppp.”

Sometimes, it sounded more as if Charlie were saying “hope. I need hope. Hope!”

Bellarour wrote, in a recent post, how does one “juggle” the “two worlds” of parenthood and work: “How do you not feel guilty about barely holding it together all the time?”

Myself, I work full-time and am deeply, passionately engaged in my work and deeply, passionately engaged in being Charlie’s mom (and best friend and wife, and fellow Team Charlie member, to Jim). Today the black car took me to Jersey City to sit at my desk and to teach my students, and then ferried Charlie 45 minutes in the opposite direction for a verbal behavior session. With all of the changes he has had to go through, he was very happy and talking a lot with Miss Cindy, then cried for a half-hour, then was okay, then cried on and off on the way home, especially when I had to stop for gas.

“Sweetie, we’ve got to hang in. We can always hope things will be better,” I said. Charlie called for my mom and “home Daddy” and sniffed. My mom had his dinner ready soon as we walked in the door at 7.30pm and he was a happy soul (and rather silly, with some knocking around of the furniture). He went to bed early, as I gently insisted, and with no objections.

We’re able to “hold it all together” at least some of the time by knowing when to ask for help (as in my asking my mom to stay with us these past few weeks; how fortunate we have been that she has been able to), and by always hanging onto hope and Charlie.


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