Written by Guest Blogger, Jen from Unique But Not Alone http://alphagirls.blogspot.com Here We Go A bright blue sign that said Meteor graced us as we walked up the ramp toward the gate. I held her 4-year old hand in mine. Our hands were both sweating in response to the 80 degree, humid weather. Meghan skipped…
Category Archives: Advocacy
A Life Worth Living
I first read the article I’m about to share with you a few days ago. I hesitated for a moment to share it due to it’s obvious religious overtones. But the story is true. The author is sharing memories of his daughter through the eyes of his experiences and daily life. His life just happens…
A New Website Helps Parents Navigate Medical Research Trials
I’m the Mom of a kid with special needs. Parker was born with an extra chromosome. It’s known in layman’s terms as Down syndrome. But Reed and I refer to that extra chromosome as ‘no big deal.’ Honestly and truthfully. Especially compared to Parker’s diagnosis of Pulmonary Hypertension. Parker can live a long and joyful…
A port in the storm
This weekend I am off to camp….with my kids….and my husband….and 20 other families dragging their bags of chemo and immune-suppressed kids into the wilderness. ** snort ** The “camp” has private suites and there will be nightcaps. This is how I roll the wild. But the 20 other families? That’s the best part. It’s…
Talking About Your Child’s Special Needs
Based on this post, many of you asked my thoughts on specific issues. Last week I began writing about the requested topics. Talking to people about your child’s special needs can be difficult. You should always remember that who you talk to and what you say is always your choice. Also remember, talking about it…
Not your average to-do list
I wrote this guest post recently and have been asked several times to repost the list portion. This list is what I wish another person had sit down and explained to all my friends and family….the things I would have told everyone if I’d understood at diagnosis. The things that could have saved friendships and…
The Realities of Reflux…
My husband always jokes that he can tell what kind of a day it has been by peeking out onto the back deck to see what has been hosed down during the day… However, some weeks are too much for even humor to salvage. Anyone who has raised a child (or two or three) suffering…
Where Is That Invisibility Cloak?
Based on my post of last week, many of you asked my thoughts on dealing with behavior issues, meltdowns in the public eye and when and how to inform other people of your child’s “invisible” special needs. Today I begin writing about those and other topics requested. Comments remain open on that post, and I…
Contest Reminder – Don’t Miss The Last Day For Entries!
Just seven more days to get your entries in for a chance at a BidetSpa!! Just recently I had one of the bathrooms in our home remodeled to be accessible for my daughter, Ashley. Ashley is 13 years old, deafblind and has had two brain tumors removed in the past, and currently has three more…
What Do YOU Expect?
Compliance – no, not the legal kind – the kind that is expected of our children with disabilities. I feel that the level of compliance expected in our school systems for our children with disabilities goes well beyond what is expected of non-disabled students. One of my children is in gifted educational programs. He is…