Different Kind of Special Blog

When your child’s developmental age does not match their chronological age, it can be challenging to find age-appropriate gifts that they will truly enjoy. That’s especially true for tweens and teens with significant disabilities. My daughter Julia is 18, non-mobile, and non-verbal. Developmentally, infant and toddler toys are most appropriate for her. But, she’s a teenager and her patience for musical, light-up toys is running out.

Over the years, I’ve frequently shed...

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...

By the time Julia was two years old, buying toys for her could be described as bittersweet on a good day and tear-inducing on most days. She had reached the chronological age where she should be playing with her tricycle, play kitchen and building sets. Yet, developmentally she was still at the level of an infant; non-mobile, non-verbal and unable to play with toys meant for kids her age.

When holidays and Julia's birthday rolled around, I found myself brushing aside my tears and...

When my kids were younger, I was that momma - the one that the neighbors talked about. On warm, rainy days, you could find me and my kids outside playing in the rain. Many of our neighbors are senior citizens, and they found our rain dances entertaining. For my kids, it was pure joy. For me, it was a reminder that you don’t always need sunny skies to find happiness.

I love this quote from Vivian Greene:

“Life isn't about waiting for the storm to pass. It's about learning...

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...

It all started with a FitBit. This might be the best gift I’ve ever received because it kicked off a self-care practice of taking walks at least four or five days a week.

Initially, the motivation for taking long walks in the morning was to reach 10,000 steps so I would get a star in my FitBit progress tracker for that day. But, as the miles added up, I realized that my long walks were essential to both my physical and mental health.

When I started walking, I didn’t use earbuds...

“Will I ever be happy again?” That thought echoed in my head over and over in the days, weeks and months after my daughter was born. When she was only two days old, she received a devastating diagnosis that included daily, uncontrolled seizures, a significant vision impairment and a life expectancy of just 6-8 years.

I was sad and angry and scared. There were times that I truly thought that I might not ever feel joy again.

Spoiler alert: I would be happy again. But, it would take...

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...

A few years ago, I came across the book “Not Quite What I Was Planning: Six-Word Memoirs by Writers Famous and Obscure.”  So much can be said with just a half dozen words, and I loved the idea of explaining my current life situation in six words. And, it’s been an evolution.

My first six-word life description after Julia was born was “Too much worrying ruins nearly everything.” I don’t think I’m alone in being a parent that worries. And,...

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...