Kristen, Director of Development for Smith-Kingsmore Syndrome Foundation, and a mom in the US, writes the blog on this site. After 15 years of questions and no answers, her son Jack finally got a diagnosis of Smith-Kingsmore syndrome. She writes this blog to help special needs families know they are not alone.
Please also check out Patsy’s blog. Patsy is a mom living in the UK. Her son Archie was also diagnosed with Smith-Kingsmore syndrome after years of not knowing. Patsy started sharing about their journey back in 2011, and writes about her family’s struggles and triumphs.
Nazira is another mom living in the US, and Vice President of the Board of Smith-Kingsmore Syndrome Foundation. Nazira writes the Beautiful Journey, a blog about her amazing family, and the boy who teaches her every day what it is to be a fighter, a warrior, to be brave and to persevere.
Family Support Blog - Smith-Kingsmore Syndrome
Anatomy of a Medical Crisis
An Event in 4 Parts It always starts out as an average, boring day, doesn’t it? I was home alone with my nonverbal son Jack. I flopped on the couch downstairs, settling into a
Declutter Your Life Without Tossing a Thing
No dumpsters needed Our culture conditions us from birth to be busy, active people-pleasers. We all have the opportunity to take less on and say no but we often don’t. Why? Because as much
Confronting the future with sweaty palms
Handling transitions Recently I attended a special needs parenting conference to prepare for my son’s transition to adulthood. Although Jack is only 15, and legally entitled to 6 more years of schooling, I figured
A Caregiver’s Challenge
Helping your child without losing yourself. Last week my favorite jeans didn’t fit. They were too tight. And no, despite my best attempt at self-deception, the dryer didn’t shrink them. A step on the
Please don’t tell me “Everything happens for a reason”
Why this platitude doesn’t help No matter where you are on your special needs journey, one thing is guaranteed: you will hear “everything happens for a reason” regarding your child. (Going forward, I christen
Expectations versus Reality
It’s just math. Jack slept through his Tim Tebow Night to Shine special needs prom. Not at home in his comfy bed, but actually at the prom. The entire 3 hours. When Mike and
