I had just returned from touring colleges with my son, Andy and ran into some friends at Peet’s Coffee. “Did he have any favorites?” one asked politely. “Well,” I said, “he loved Yale. Princeton and Brown are possibilities, but right now, it’s between Yale and Dartmouth.” “Good for him”, she replied halfheartedly, and I felt…
Category Archives: Advocacy
What If We Had Listened to the Experts?
Sometimes I don’t know where to begin…or whether to begin at all. Ever been there? My brain freeze and total body paralysis occur when I begin to think about balancing the never-ending needs of four sons – three living with a variety of special needs which comprise a spectrum of behaviors and needs…mental as well…
Try This Tuesday #36: Helping A “New” Special Needs Parent
Welcome to another Try This Tuesday. For details on how to participate, please check out the welcome post. If you’d like to join in but aren’t sure what to write about, try the topic suggestion for this week: Helping a “New” Special Needs Parent. What would you say to someone who has just learned that…
3.21.09 Celebrate Down Syndrome And Help Bring Kellsey Home
Around the world today people who love a child with Down syndrome are celebrating the beauty found within an extra chromosome. http://momseatofpants.blogspot.com 50 years ago most parents of a child with Down syndrome were told to hand their newborn off to an institution, because these children weren’t able to learn and would be nothing but…
Making a Difference
Have you experienced problems with a business or company that discourages shoppers with disabilities? Have you felt unwelcome when walking through the door of a store where the associates look down on you or your child with a disability? Would you like to take a vacation but have found it tough to travel with your…
World Down Syndrome Day
March 21st is World Down Syndrome Day. On March 21st, 2009, World Down Syndrome Day will mark the 50th anniversary of the publication of Professor Jerome Lejeune’s discovery of the extra copy of chromosome 21 which causes Down Syndrome. 3 copies of the 21st chromosome. T21. Get it? Down Syndrome organizations around the world this…
The Book Of Rare Diseases
Carrie will be a regular contributor here at 5MFSN. Look for her future posts on Sundays. There are hundreds of books that guide you on how to be a good parent. Each book has a different spin on our job, but the majority of them assume a certain path of development for our child. So…
Preparing For A Medical Emergency With A Medically Fragile Child…
A very wise NICU nurse once told me, “Sometimes the difference between life and death is in being prepared.” I took those words to heart and they saved my daughters life. More than once. When you have a medically fragile child, it can feel like you barely have time to catch your breath before the…
Try This Tuesday #33: Communicating with Non-verbal Children
For details on how to participate, please check out the welcome post. If you’d like to join in but aren’t sure what to write about, try the topic suggestion for this week: Communicating with Non-Verbal Children. I encourage those of you living or working with non-verbal children to join in and post or leave a…
A Rare Disease and Hannah’s Fight
February 28th is Rare Disease Day: http://www.rarediseaseday.org/ For many parents having a child receive a diagnosis can be heartbreaking. But add the words ‘rare’ and ‘fatal’ to that diagnosis and heartbreak turns into terror. Where do you find doctors to help in your child’s fight for life? Are there treatments? Are there others out there…