When you have a child with special needs, you are ON at all times.Or, it certainly feels that way. Often. When you have a child with Prader-Willi syndrome (“PWS”), because of the high food drive, called hyperphagia, you have to be structured, consistent and vigilant, about the food schedule, food security, and keeping everything locked. Not leaving any food out. Avoiding Continue Reading
Please Don’t
A two word prayer.⠀⠀⠀⠀⠀⠀⠀⠀⠀A two word wincing and wondering and hoping.⠀⠀⠀⠀⠀⠀⠀⠀⠀A phrase of my anxiety about his anxiety.⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀Please don’t…wake up “off” today.⠀⠀⠀⠀⠀⠀⠀⠀⠀Please don’t…get upset.⠀⠀⠀⠀⠀⠀⠀⠀⠀Please don’t…be obsessive this morning.⠀⠀⠀⠀⠀⠀⠀⠀⠀Please don’t…complain. ⠀⠀⠀⠀⠀⠀⠀⠀⠀Please don’t…fall apart and cry.⠀⠀⠀⠀⠀⠀⠀⠀⠀Please don’t…bother the neighbors.⠀⠀⠀⠀⠀⠀⠀⠀⠀Please don’t…talk to Continue Reading
Do You See Us?
Do You See Continue Reading
Random Thoughts & Questions During COVID-19
Anyone feel like they are all over the place in thoughts, questions, and feelings?? I go from asking myself: (IN NO PARTICULAR ORDER…obviously) What is the lesson here? To:Do I even like my pajamas anymore?Deep thoughts.Random thoughts.Fear-for-a-moment thoughts and then I shut it DOWN. How can I best support my family and friends?How can I comfort myself?Will I ever get out of my Continue Reading
Extraordinary
San Quentin Prison looks a little like Disneyland from the outside. Rather circus-like with ornamental details and multiple paint colors. At least to a 10-year-old girl. I had a Dorothy Hamill bowl cut, and so despite, my flowery top and Dittos pants, I was questioned whether I was a boy or a girl. Checking in to visit someone in prison was quite the arduous Continue Reading
Desperate for Respite
I am thinking about starting a nonprofit organization where we pick up special needs moms from their homes on a Friday night in a luxury sprinter van, complete with yummy snacks and beverages. At the very same time, at each home, we drop off sweet Mary-Poppins-meets-The Rock-specially-trained caregivers. Therefore, the moms can leave in peace and comfort, knowing that their children (of any Continue Reading
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