I had a meeting today with various members of our support team at school. I was trying to understand more about what is going on with the child’s writing, and basically learned nothing. “She’s doing fine. Yes, we acknowledge the struggle that writing, and indeed any expression of language is for her, but she’s meeting…
Category Archives: Advocacy
The Working Special Needs Mom…
So, how does one do it? Work and be Mom of the Medically Fragile? I need to know. I have a job interview. For a real, big girl job. In my field. At a large hospital. In a position that I, a few years ago, could have only dreamed about. I don’t really want to…
It’s POTTY TIME!!!!
A few years ago, I fell in love with Signing Time. Jack was struggling to do much more than scream and I was increasingly frustrated. In a last ditch effort, I bought some DVDs and prayed that he would communicate with me. Slowly, he began to sign (things like more and done) and I felt…
Message for ALL Mom’s.. LOVE your kids, as if they were dying..
My day had started like any other, I was up at 5 packing lunches and backpacks, while trying to gulp down some coffee. I had an appointment at the office later, so I spent a few minutes standing in front of my closet perplexed and sighing. I looked in the mirror, briefly noting the major…
Love is…
Love is… Love is… a choice. Love is… knowing that without them, life would be empty and cold. Love is… sharing tears. Love is…worth fighting for. Love is…a knowing glance across a room. Love is… hurting for someone else. Love is… a familiar smell. Love is… something that is so easily tossed aside when…
How Not to Talk Behind My Back…
When Jack was first diagnosed, I was horrified. Depressed. Had major anxiety attacks. Cried for hours. Somewhere around Jack’s second year, I felt myself changing. I no longer longed for the green field across the fence–I was OK with the patchy grass holding one perfectly beautiful flower in my own yard. So, I started writing…
On Validation…
So, we are finally settling in and making life work. Part of that means we had to get all Jack’s records and get them transferred to new physician’s here. That was a ton of fun. (rollllllls eyes) However, the most interesting thing happened. We took Jack to his new GI on Friday and she… listened….
Rebuilding Life – An Interview With a Pro Who “Gets” Us
You know those stories we all tell about our kids’ care team professionals who don’t have a clue? The ones who clearly don’t know at all what life is like outside their 15-minute office visit with our child and her challenges? My guest today is NOT one of those professionals! Harriet Cabelly is a Life…
Insurance Advocate: Why You Need One and How To Get One
Remember that list of caseworkers I told you about? Well, in my haste to count on all my fingers the number of caseworkers in our life, I neglected one very, VERY important caseworker / liaison we’ll call “Miss W, The Insurance Gal”. I could tell you a lot about “Miss W, The Insurance Gal”; give…
The (Not So) Fine Art of Negotiating With My Tween’s Bipolar
We’re getting ready to go to the beach. It’s New Year’s Day. (Yes, I know I’m lucky. Truly grateful!) While I’m packing, my daughter with anxiety disorder and Bipolar is escalating. She follows me around the house as I collect towels, bathing suits, beach shoes. “You threw out my old swim suit?!” She accuses, screaming…