I am not paralyzedby sadness anymore as I roam the toy aisle at Target I want you to know it gets better (and then it gets a little worse, but then it gets better again. and that’s just before breakfast. You get the idea). on the eve of his 21st birthdayI am not buying my firstborn a six packor promising to pick him up from…
From Autism to Rare Disease: Our Family’s Journey to an Unexpected Diagnosis
After being diagnosed with autism, epilepsy, global developmental delay and intellectual disability at the age of two, at 16 Andrew was diagnosed with Syngap1, a rare genetic disorder that explains his lifelong physical, cognitive, and communication challenges. We know there are more kids and adults like Andrew out there, who have Syngap1 and just don’t know it yet. By bringing awareness to this rare disease, we hope to help families and clinicians identify the Syngap patients and drive research towards successful therapeutic interventions.
Why We Stopped In-Home Therapy for Our Son with Autism
No one knocked on our door yesterday. Every once in a while, I’d stare at it, consumed by its silence, wondering in the stillness of the afternoon if we had done the right thing. For fourteen years, except for weekends, holidays, and the occasional sick day, a therapist has been in our home. Five days…
Shut.Up.
He is wiggling in his seat and not the good kind of wiggle It’s the kind that let’s me know all hell is about to break loose “It’s okay baby,” I purr as we pull out of the driveway but his wiggles turn to whines and I turn to the deep breathing I…
Another Reason Why I Eat Cheese-Its at 1:00 O’clock in the Morning
Among the mystery cans and salad dressing bottles in the bedamong the in-home therapy each day after schoolthe YouTube videos on repeatthe inappropriate squeals during churchthe stims and elopement that always keep us on our toesthere is that other thing we don’t talk about quite as oftenbecause, after dosing you with what can only be described…
Somewhere In the Middle
That is where I am I don’t petition the governmentOr write threatening letters to drug companies I don’t tape record IEP meetings or have a panel of attorneys at my sideI don’t demand that the school district pay for horse therapy or expect hard working teachers to perform miracles I stay awake at night, counting…
125mg + 125 mg = Too Much Medication
“I can get you in on the 12th of February at 4:15 p.m.” “Wonderful. Thank you Dr. Marci. In the meantime, can we start decreasing some of the meds? It just seems like so much.” “I want to decrease the Klonopin first, but in order to do that, we have to go up on the…