Tag: special needs

Special Needs Sibs are Special

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When your first child has special needs, you question having a second child.

You worry if they too will have a medical diagnosis.

If typical, you worry about their relationship with your first child. Will they be resentful? Will they know how to play together? What kind of relationship will they have? Will they bond?

You worry about your own relationship with them – will I have enough time to devote to them, considering my child with special needs requires so much of my time?

We had ALL of these worries when we were planning for Solly’s little sister, Bea. Once she arrived, though, those worries started to dissipate. Bea is 100% typical. She’s a chunky, milk lovin’, Sesame Street obsessed 21 month old. And she loves her brother to pieces.

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Sweet Bea

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Solly’s First Day of School

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Well, this happened last week.

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Solly’s First Day of School

After a sleepless night and crazed morning on my part, I woke up Solly, dressed him in an outfit that he’d picked out the previous week, and packed up his brand new school bag, then Mike and I took him to High Hopes in Franklin, TN. I wheeled him into his new preschool room, chatted with his teacher for a few seconds, and then tried to give him a kiss goodbye – at which point he quickly pushed me away because, you know, preschool boys are too big for kisses from their Moms.

And then it became official. Solly is a preschooler.

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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 →

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.

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