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
Live your life forward by working backwards
How to live a meaningful and authentic existence when you don’t know where to start. I LOVE documentaries. Especially “people overcoming adversity in nature”-type ones. From ultra-marathons through deserts to mountain climbing without safety harnesses, you
Love is a verb
Love does what needs to be done even when your mind and body recoil. Clutching my soggy tissues in a death grip, I couldn’t stop bawling. I was perched on the edge of a
Confessions of a (not so) Tiger Mother
Tenacious practice, practice, practice is crucial for excellence; rote repetition is underrated in America. – Amy Chua Ever read “Battle Hymn of the Tiger Mother”? This controversial memoir by Amy Chua details her strict
The Elf On The Shelf Is The Devil’s Plaything
My beef with The Elf on the Shelf This thought may be unpopular, but I’m gonna challenge that sacred cow, the third rail of holiday festivities: The Elf on the Shelf. To be clear:
The Secret Freedom Of A Special Needs Mom
Confessions of a former approval seeker Years ago, I was a people-pleasing rock star. The minute you required something of me, I delivered. I fed on your approval and validation. Whether it was getting
Caught between two worlds: what is “normal”
The event 5 years ago Jack stopped breathing. He had a grand mal seizure in his bedroom, just after dinner. My other child and I had heard a loud thud and then…silence. I bolted
