Tag: parenting

Taking A Pause

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It’s been a rough couple of weeks.

Bea’s been whiny. She hasn’t been sleeping, eating, or wanting to do anything other than hold my hand. Solly has been cheerful as always, yet somehow not acting himself – running a little warm, not eating great, just a little off. I’ve been exhausted. More so than usual. We’ve been struggling to get anything done other than keeping ourselves fed, staying cool in the summer humidity, and getting in bed at a reasonable hour.

Something just hasn’t been right.

Then, last Monday, Bea started sticking her fingers in her ears. She was jumpy at any noise, crying unusually hard when Solly spoke too loudly or when the dogs barked. She threw a fit – a full-on two year-old’s meltdown at only 16 months old – immediately when she didn’t get her way.

Something wasn’t right. Continue reading →

Dad Is Awesome

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There’s a little tune that Nanny Jen sings to Sol when he does something really well: “Solly is so great! Solly is so awesome!”

It’s simple, but effective: Solly gets excited when she sings it, and then her song gets stuck in my head for the rest of the day.

img_0925Today, though, we’re reworking that tune for someone else in our family: Mike, aka Dada. The truth is, as it is in many special needs families, Mike doesn’t get the credit he deserves. Most of the time readers hear about Solly, who works his tail off at everything he does, or about me since I’m the one who takes him to his doctors appointments, equipment fittings, and therapies, and deals with all the daily emotions of those appointments. But, in the background, there’s Mike (known to Solly and Bea as Dada), who, since the day he became the sole breadwinner of the household, has been working his tail off at the office, where his career has taken off, earning him a major promotion in the last year, all to make sure he takes care of his family.

But, his job isn’t why he’s so awesome. Here are just a handful of reasons why we love Dada and are celebrating him today on Father’s Day: Continue reading →

Head of Ring Security

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This past weekend, my eldest nephew, Reid, married his best friend, Katie. The wedding party included eleven beautiful bridesmaids, eleven handsome groomsmen, a very sweet flower girl, and Solly as the ring bearer.

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Solly and Reid

My heart soared when Reid and Katie asked Solly to be their ring bearer late last year, especially when I overheard Katie tell him: “Now, Solly, we don’t care how you get down the aisle. You can walk, you can ride in a wagon, you can be carried, we don’t care. We just want you to be a part of our day.” (How lucky are we that Katie is now a part of our family?!) And the inclusion didn’t stop there: every time anyone in their wedding party saw Solly at any of the wedding events and over the wedding weekend, it was “oh, hey Solly, how’s it going?” even though every single person who said hi to him knew it was very likely that Solly would just respond with a “hi” and a wave. This approach to including Solly is how I wish the world would include anyone with a physical or intellectual disability.  Continue reading →

Acceptance

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This Fall, we’ll spend an extended period of time in Roanoke, Virginia for an intensive therapy at the Virginia Tech Carilion Research Institute. The intensive will be 4 weeks long and includes therapy for up to 6 hours per day. Talk about an intense intensive! A part of the intensive therapy program will include Constraint-Induced Movement Therapy (CIMT) where Solly’s stronger side (the left side) will be constrained to force the weaker side to take over.

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Solly during our first round of CIMT in Nashville

We previously had 4 weeks of CIMT in Nashville at Vanderbilt Pediatric Rehabilitation right after Solly turned two. While we saw some gains (i.e. more movement in the right shoulder), because Vanderbilt’s approach was to cast the child and send them home without intensive therapy, aside from an extra hour-long appointment or two during the week, we did not experience a ton of progress with our first round of CIMT. While this approach may work for children with mild cerebral palsy, we found that it isn’t as effective for moderate to severe cases, like Solly’s.

With CIMT, the more therapy you can do while the stronger side is casted, the more effective the therapy will be. Given the intensive model available at Virginia Tech, I am eager to see how much awareness Solly will gain of the weaker side. Continue reading →

A Nanny for Two Adorable Children

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Why don’t you guys take a break tonight from poopy butts and sick kids and go have some dinner and drinks. I can stay till 9 so you’ll have plenty of time for dessert too!

Mike and I received the text above from one of our nannies while I was en route to Solly’s first-ever dentist appointment, after a sleepless night thanks to a teething and diaper-rashed Bea. Texts and conversations like this are fairly normal from her and our other nanny: “Camie, go for a run! I’ve got the kids. Go ride your horse. Go take a nap! TAKE A BREAK!”

To them, nannying is a job, yes, but in the 15 months and 8 months that we’ve employed Nanny Jen and Catherine, respectively, each woman has become an extension of our family. They love our babies, go above and beyond to learn handling methods, feeding techniques, equipment, doctors’ and therapists’ names, and help me with research and brainstorming ideas for just about everything. They get what both of our babies need and also act as a continuation of me around the house, doing laundry, wiping the counters, letting the dog out, basically doing whatever needs to be done to keep our household running smoothly.

I feel so incredibly comfortable leaving my babies in their care. I don’t know what I’d do without them.

When we moved to Nashville, we largely chose to move so we’d be closer to family for some much-needed support. What we didn’t realize was how much support we needed.

Continue reading →