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
The insidious pressure of “fun”
Parenting struggle #452 Confession: Some days I exhaust myself worrying about fun. Not for Jack’s sibling, who’s typically developing. Boredom sparks growth and creativity, after all. I’m not a concierge. My role as mother
Sweating the small stuff
Simplify your routine with these 3 questions “Great things are not done by impulse, but by a series of small things brought together.” Vincent van Gogh Have you ever considered the grueling job of
To the parent trapped in a horrible day
A pep talk. I see you, my fellow caregiver. You’re trying and failing to hold it together because today is bad. Like really bad. Like so bad you don’t know how to get through
Savor the bite-sized victories and joys
Amuse-bouches for the soul. “Tell them no. They should get the information themselves.” So said Dr. G, my long-ago therapist. I’d been venting about my latest drama in the world of special needs parenting.
Cut me a piece of that humble pie…
…while I get off my high horse We judge ourselves by our motives, but others by their actions. Dr. William Nevins The incident A few weeks ago, I braved the UPS store to ship
Holidazed and Confused
We are no longer an agrarian society. What’s up with the extended school breaks? 4 strategies to maintain sanity over the holidays. “Only 5 more days of school until winter break!” The old lady
