Different Kind of Special Blog

Earlier this year, my medically complex daughter with significant disabilities turned 18. This birthday was a sweet victory because we weren’t sure that she would ever reach her eighteenth birthday. The average life expectancy for kids with her syndrome is 6-8 years, and just before her birthday, she spent nearly a month in the ICU fighting for her life. We certainly had cause for celebration on her birthday.

But, turning 18 has meant some extra challenges as well. Now officially an adult, our ...

Last week, my husband and I noticed that we were both sleeping restlessly. After a night or two of tossing and turning, we realized that our sleeplessness was being caused by the hooting of a nearby owl. Even though the owl wasn’t very loud, it turned out that this owl’s call sounded exactly like the soft, whimpering moan that my daughter makes when she’s uncomfortable and needs help. So, every time the owl hooted, my husband and I would startle awake, ready to rush to our daughter’s side. The h...

As special needs parents, it can feel like we have zero time for ourselves. We might even laugh if someone suggests ‘self care’ to us because really, when would we have time for that?

But, is it possible that you are missing out on opportunities to take care of yourself in little pockets of time? Self care doesn’t have to be complicated to be effective. Even if you only have five minutes, you can do something that can have a big impact on your mood.

Here are some ideas to get you started:

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Last year, my husband got me a FitBit for my birthday. That gift inspired me to give myself an ongoing gift of self-care: I’ve been walking 10,000 steps at least three or four times a week while listening to podcasts. I’m proud to share that I’ve walked more than 750 miles in the last eight months.

That means I’ve also listened to hours and hours of podcasts. One that I’ve especially enjoyed is Life Coach School with Brooke Castillo. In one episode, she shares a model that I call the ‘Empowerme...

When I was younger, I would sometimes find myself thinking about how I would handle adversity if and when it came my way. I don’t mean disappointments or small setbacks. I wondered how I would react to a really difficult life circumstance. I thought about whether or not I had it in me to behave with strength and grace when things got really hard.

Then, at a routine 20-week ultrasound during my second pregnancy, I started to uncover the answers to those questions. I learned that when faced with ...

True confession: I spend a lot of time on Facebook. My husband and kids have made comments about how much time I spend on my computer, and they’re not wrong. However, I don’t think I use Facebook in the same way most people do. Sure, I spend some time following what my friends are up to, and I watch a funny video or two once in a while. But, for me, Facebook is primarily a ‘research’ tool. I spend the majority of my time on Facebook learning more about how I can help Julia, either now or in the ...

I recently wrote an article for Exceptional Parent magazine about making connections when your child has a rare disorder. Over the years, I’ve found that you can truly rely on other special needs parents for advice, friendship and support.

Recently, there was a meme circulating around the special needs community about what happens when a special needs parent falls in a hole. The theme of the meme is that when you have a child with special needs, the only person who you can truly count on to hel...

There are some words that cut deep and can never be forgotten – even words that aren’t meant to hurt. Several years ago, someone very close to me was talking about a friend of his who has three kids, two of whom have special needs. He told me, “She’s really not a very good mom, but even she doesn’t deserve to have two kids with special needs.”

It still makes my stomach clench to think about those words actually being said out loud. I had seen this lovely mom with her kids a few times, and the o...

Navigating life when you have a child with special needs is all kinds of challenging. It tests you emotionally, physically, mentally and spiritually. Do you wish you could find something or someone that could make parenting a child with special needs easier?

Over the last 16+ years, I’ve spent countless hours trying to solve the intricate puzzles that my daughter Julia has presented based on her profound developmental delays and complex medical issues. Here are just a few of the issues our fami...