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Raising Activists 26 Aug 2013 | 06:52 am
This past June I took our daughter Quinnlin to Washington, DC to speak to legislators about several issues that impact PKD (polycystic kidney disease) patients. Among the issues, we were asking for s...
Being "Mom" 19 Aug 2013 | 03:00 pm
Sometimes I wonder what things would be like if I never became "Autism Aware". I mean, when Big Brother was turning 1 year old (he's an April baby), every time I turned around, there were Public Serv...
Special Needs, Special Heartache, and a Special CD 18 Aug 2013 | 07:06 pm
Wil has worked in a preschool this summer, the same one in which he's worked for the past two summers. By "summer" I mean he has actually worked 17 mornings, from 9:00 - 1:00. We'll take it, right? 68...
Control. 16 Aug 2013 | 06:35 am
This is my least favorite time of year. Summer ends. School starts. Routines are trashed and rebuilt. Everything is new. Not good for a kid with autism. Or his mom. He's getting a new self-contai...
Misguided Anger isn't the Answer (But Sometimes I Can't Help Myself) 15 Aug 2013 | 08:24 am
My husband has been sick for a few days, sicker than I think I've ever seen him. Thankfully it isn't anything serious, a very bad cold or maybe the flu. He's been down for the count for several days, ...
Dear Krabbe Disease 12 Aug 2013 | 07:54 am
Dear Krabbe Disease: You have officially tried my patience this summer. I am truly exhausted by your presence in my house. You have officially sucked the life out of my soul and spirit and have creat...
Moments of Grace 11 Aug 2013 | 05:00 pm
Sometimes things just don't go as planned. At all. I hate having bad weeks, because for me it is never just one bad thing, it s lots of bad things. All at once. It's hard to stay positive when they...
The goal posts keep moving! 5 Aug 2013 | 06:18 pm
The goals for my son have changed considerably over the years. Year One: I just knew that I was going to have a happy contented baby who would be just like his incredibly easy big brother. ~ Turns o...
Get Ready ‘Cause Here it Comes… 1 Aug 2013 | 06:26 pm
- - - - - - - - - - - - - - - One of my early blogs was healthcare reform 101 for family caregivers of kids with special needs. Reforms for children included no lifetime caps, no cancelling policies....
Prior Authorizations and the Making of a Paladin 29 Jul 2013 | 07:35 am
As a parent of two children diagnosed with special needs, the two most despised words in the entire English language are: "Prior Authorization" No, scratch that! The two most despised words are mos...
