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33 Speaking In our family therapeutic model, I carried on with my specialty— speech. As the primary parent at home, it made sense; I talked to and with my children all day. It was a natural fit. I just talked and read and sang with Michael a bit more. During our regular check-ins with speech therapists, we focused on what we could replicate at home. But the acquisition of spoken language proved to be a long journey. Soon after realizing that Michael could indeed crawl and walk and run and negotiate stairs, I also realized that I had begun to suppress my own fears about Michael’s ability to communicate. Sometimes, it takes a keen ear and endless patience to engage in a conversation with someone who has Down syndrome. I can’t say for certain this applies to all individuals who harbor the genetic anomaly, but I’ve spent the past twenty-plus years around enough folks with Trisomy 21—the medical term used when a person has a full or partial extra copy of chromosome 21—to make an educated generalization. Comprehensible speech is of paramount concern in the wide, wacky world of Down syndrome. At times, to the untrained ear, Michael’s speech can sound garbled, like he is spewing out a great gush of nonsense. Jim often has to remind me that I easily understand Michael only because I am his mother. Waiters at our favorite Mexican restaurant may hear Michael recite , “I’d like two ufos with macaroni,” yet I know that Michael has actually just ordered “two tacos with meat and cheese only.” I can barely 34 ♦ Life with a Superhero contain my glee at this act of independence, that Michael is practicing a useful skill. I am so giddy in fact, that I usually miss the countenance of confusion on the poor waiters’ faces while they try to recall if “ufos” and macaroni have recently been added to the menu. It usually takes me a few seconds, and a kick from Jim under the table, to notice the waiters’ non-verbal pleas of “Please G-d, help me understand so I don’t do anything to hurt this kid,” as little beads of sweat gather at their temples. I have to admit that I don’t make waiters’ lives any easier when they finally break down and ask me to translate. No. I am cruel. I insist that Michael repeat his order, until the waiters understand. And then, I go back to my glee. It took Michael twenty years to accomplish his restaurant ordering skills, and I refuse to let a little hiccup in food service communication set us back even one iota. I am grateful for all the patient waiters who seemed to innately understand the remarkable gift they gave Michael by listening with a kind and gentle smile. ♦ ♦ ♦ I never crawled. When I was nine months old, I simply stood up and walked. It is also said that I never really babbled or baby-talked; at one year of age, I simply began having conversations with my mom and dad. This would suggest that I would grow into a gregarious and precocious child, but that was not the case. I had no identifiable needs, like Michael does, but I became shy and quiet in my early childhood. I made up a language when I was five and spoke it for about a year, then later, in fourth grade, I couldn’t shut up and babbled nonsensically. Soon, I became quiet again. Speech has regressed and progressed like this my entire life. Maybe crawling is one of the imperative prerequisites to healthy development. Maybe I missed something that my brain desperately needed, but I’m sure there is zero science to back this up. Maybe what I’m saying is that, perhaps, if we don’t linger long enough at each milestone , even when those milestones are way off the mark of anything Speaking ♦ 35 that might represent a typical trajectory in a baby book, it may set the stage for us to regress later and try to make up for lost lingering. Maybe Michael is lucky that so many of us stand by and make sure all his developmental steps are carefully crafted and molded. Even so, I worried that the tremendous attention paid to Michael’s physical development would not transfer, or flow, into his ability to speak. And, in a big family, it is a good thing not...

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Additional Information

ISBN
9781574415377
Related ISBN
9781574415247
MARC Record
OCLC
852899343
Pages
288
Launched on MUSE
2013-10-21
Language
English
Open Access
No
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