Recently my colleagues at the Federation for Children with Special Needs have been talking about the importance of preparing kids for medical transition to adulthood—how parents and caregivers need to deliberately teach kids the skills and build the confidence they will need to be engaged in their own health care as adults. When the topic …
Continue reading “Transition baby steps that lead to major milestones: It starts with YOU!”
As I approach my 10th year milestone of parenting a child with special needs, I remembered some research I read years ago about what makes someone an expert. Psychologist Anders Ericsson is well-known for his theory regarding expertise: it doesn’t take innate skill or genius. Just lots and lots of practice. In study after study …
Reflecting on Rev. Martin Luther King, Jr.’s contribution to peace thought I’d share a blessing by Hagen Hasselbalch which I found in Earth Prayers. It so beautifully captures the open-armed ambitions of the peace movement inspired by folks like Dr. King: the desire for justice, for access, for respect for each other and the earth. Let …
Continue reading ““Let there be peace, welfare and righteousness””
Here’s another in my toolbox series of techniques that inspire me to live with joy, compassion and courage, as inspired by the Hindu goddess Durga — my nominee for patron saint of special needs parents. When it comes to raising kids with special needs, there are a lot of gatekeepers who get to be on …
Continue reading “Asking Stupid Questions, aka Beginner’s Mind”
The daily grind of life as a special needs parent often feels like a game of Whac-a-Mole. Have you played that arcade game?
After years of asking myself questions like “Why am I filling out this medical form when this information is already in their computer?” or “Why does this doctor only see patients during school hours?” and other such silly observations along the journey through parenting a child with special needs, I suddenly find myself invited by …
In 10th grade business class, my teacher Mrs. Goldstein taught our class a model that promised to make us more successful in life. When faced with a difficult decision of whether or not to do something, she counciled us to execute the following strategy: At the top of a sheet of paper (this was the …
Life is glorious, but life is also wretched. It is both. Appreciating the gloriousness inspires us, encourages us, cheers us up, gives us a bigger perspective, energizes us. We feel connected. … On the other hand, wretchedness–life’s painful aspect–softens us up considerably. Knowing pain is a very important ingredient of being there for another person. …
Yesterday we spent the day with what I affectionately refer to as our “tribe” – a group of families who all have a child with the same genetic syndrome as our son. We hung out, had lunch, chased kids, talked shop, gossiped about doctors, shared resources, marveled at similarities and empathized about shared challenges. Although …
I’ve had an active, entertaining weekend. Yesterday I attended a Special Needs conference hosted by a statewide consortium of agencies that serve families and children with special needs; this morning I joined 6,000 festive folks to run 5K through our town. Because both events occurred on the same weekend last year as well, I found …
