Archive for June, 2016

Pomp and Circumstance for the Intermittently Intelligible

Eliana gets mounds of mail for an almost three year old–some of it addressed to her, not her parents or guardians, which still throws me off because isn’t it illegal to open someone else’s mail?–most of it mind-numbing insurance and medical papers, but occasionally something insightful, like the copy of the report that came in the mail recently from her evaluation for services through the intermediate unit.

The county intermediate unit (IU) is the next step after early intervention, the in-home birth-to-three program for kids with developmental delays and disabilities. Next month Eliana will reach the ripe old age of three and graduate from early intervention. Unfortunately, there’s no ceremony with little caps and gowns, and she doesn’t get to march down the aisle to Pomp and Circumstance and get a tiny diploma. Worse yet, there’s no not graduating, since it’s based on age, not meeting educational requirements, so while her therapists would love to keep working with her, she’s aging out.

The IU therapist who evaluated her wrote in the report that Eliana was “intermittently intelligible to this novel listener.” While I was amused by the typo saying that Eliana ate cheetahs, imagining her on a big-game hunt in Africa rather than crunching Cheez-Its on the couch, Hank latched on to “intermittently intelligible,” and it’s become our new catch phrase. I mean, aren’t we all at best only intermittently intelligible? I even suggested we consider renaming the blog.

This week I came across a therapy facility in a magazine and called to see if Eliana could get in there. I had a long conversation with the woman who answered the phone, and one of her questions was what’s Eliana’s diagnosis. I rattled off the name of her syndrome, mentioned heart defects and scoliosis, and by the time I got to the fourth diagnosis I paused, said, “Uhhh…” and started laughing at myself for being intermittently intelligible.

Communicating is actually really hard sometimes when you’re a special needs parent. You never know what the other person knows. I belong to an online group of moms whose children have heart defects, many of them much more serious than Eliana’s, and half the time I don’t understand the posts, between the acronyms for diagnoses she doesn’t have and the different procedures and treatments. Even among a group of peers, we’re only intermittently intelligible.

Back on the phone, I immediately regretted laughing and hoped the woman understood I was laughing at my own faulty speech, not the long list of diagnoses. Thank goodness the person on the other end of the line happened to be another special needs mom who simply said she’d love to give Eliana a hug. Guess I got my point across.

June 26, 2016 at 1:10 PM 1 comment

On the Subject of Father’s Day

Little-known Father’s Day fact:  in order to be a father, you first need to have kids.

So in honor of Father’s Day this year I want to talk a bit about Shira, who first got me into this whole fatherhood thing 11 years ago. She keeps growing up – as kids tend to do – but for some reason things seem to have sped up these last few weeks.

It all started for me at a Daddy/Daughter dinner in McDonald’s a few weeks ago (don’t judge – my first “date” with Amy included dinner at Wendy’s). Maybe it was when she ordered the 6 nugget kid’s meal, or how she confidently told me where we were going to sit instead of letting me pick. But whatever it was, instead of eating with my kid it somehow felt like I was eating with an actual person who just happened to be my kid.

Shira on a crayon

(Not actually at her gym show, but still cool.)

Fast forward to her gymnastics show. This year she decided to move to “urban gymnastics” – climbing walls, jumping over stuff, and all that. Think a very light version of American Ninja Warrior. It’s a “coed” class…by which I mean it’s a half-dozen boys plus Shira, and sometimes that wasn’t easy. But during the classes and then at the show you could tell that she was really focused on doing well and enjoying herself. Y’know – actually listening to the instructor and trying to improve instead of just throwing herself at a wall. Quietly, and without making a big deal of it, she kicked those boys’ butts on most of the exercises. Think the crowd may have noticed, too.

Then her recent piano recital, where she showed such poise in her awesome performance. The last two years with her prior teacher the recital was done on a small upright in a church basement. This year she played a baby grand raised up in the center of a large sanctuary, complete with lights and microphones. Others might have been nervous, but she totally crushed it.

The artist after work.

The artist after work.

Yeah she did.

Watching her practice and then play the recital pieces you could see all the details coming through – adjusting hand positions, working the pedals, powering through any little mistakes. Somewhere in there she transitioned from “I take piano lessons” to “I play the piano.”

Then in just the last week or so it feels like she’s grown so much as a big sister to Eliana (I had to mention her once, OK?). No doubt that’s been hard with the way things have been for the past 3 years, but evidence suggests she’s got it down pat. Riding the rides with her at Sesame Place, exploring Hershey Gardens, helping her float in Grandpa John’s pool – even just picking up the slack when Amy and I want to wring Eliana’s cute little neck – she’s definitely hitting her stride there too.

Water party with Eliana

Water party with Eliana

So with all that let me just say “Happy Father’s Day, Shira.  I couldn’t have done it without you.”

June 19, 2016 at 7:00 AM 3 comments


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