Tag: parenting

Living Life in Limbo: How We’re Doing in the Time of COVID-19

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One of the biggest lessons Solly has taught me is that you can’t control everything. Keeping that in mind, it’s pretty ironic that he was born to a type-A, control freak – a.k.a. me.  It took me some time to learn how to go with the flow, but five years into our parenting journey, there’s not a whole lot that ruffles my feathers anymore. That being said, when the future is in limbo, I sometimes still struggle to remain calm and unworried.

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Snuggles at home

After we moved to California, everything was very much uncertain. Other than immediately getting Solly on the waitlist for weekly therapies, I didn’t worry about anything else: I figured things would eventually fall into place. And they did – we got a coveted weekly spot at NAPA Center for Physical, Occupational, and Speech therapies, I found a very sweet and super responsive pediatrician who Solly and I love, and we were able to make a dent in setting up our medical team, having one appointment with a neurodevelopmental optometrist and scheduled appointments with a well-respected pediatric neurologist and orthopedic surgeon. We even made contact with the school district to kick-start the IEP (Individualized Educational Plan) assessment process so Solly would be set up to start kindergarten in the Fall with all appropriate supports in place.

Then the COVID-19 pandemic hit. And, while we are all healthy and safe at home, a life in limbo became our unforeseeable future.

Here’s how we’re doing in all aspects of Solly’s life: Continue reading →

Setting Goals for Intensive Therapy

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img_0597We’re in the final week of our fourth three-week intensive at NAPA Center. Once we wrap up on Friday, we’ll have completed a total of six intensive therapies with NAPA and several at other clinics, and while I’m far from being an expert in navigating the world of intensive therapies, I now feel confident in what to expect when we walk through the doors on Day 1 of an intensive.

While there is a lot of planning and paperwork that goes into an intensive, without a doubt, one of the hardest parts of intensive therapy – aside from managing Solly’s fatigue and constant need for motivation – is setting goals at the onset of treatment. Goals are vital to the success of intensive therapy. They help the therapy team understand what I envision for Solly; they guide the therapy team in developing a plan for the duration of the intensive; and they can also dictate Solly’s confidence throughout the intensive therapy. Too easy and he quickly becomes board. Too hard and he doesn’t want to participate. For these reasons, there is quite a bit of pressure for me to fine tune our list of goals before starting an intensive.

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New Year, New City

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I have struggled to write this post. I’m not sure why, but it’s been hard for me to put into words why we decided to pack up and move our family to Los Angeles at the end of 2019.

Maybe it’s because four years earlier, we’d moved to Nashville to be close to family. Maybe it’s because after three years there, we’d finally assembled the right therapy and medical teams for Solly. Maybe it’s because people usually move for work: it’s unusual for a family to move for the well-being of their child.

But that’s just it. We moved for Solly. We moved for Bea. We moved for our entire family. We began 2020 as residents of Los Angeles.

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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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