Practice and repetition are important factors in helping Angels learn. My 11-year-old Angel, Juliana, completes Mom-appointed homework to reinforce what she learns at school. Homework also makes a strong connection between school and home. The idea for homework for Juliana came from my 10-year-old daughter, Jessa. Jessa is a fifth-grader…
A Glass Half Full – a Column by Sabrina L. Johnson
In a special needs life, change is the everyday normal. This can be a challenging realization to embrace. But once you wrap your head around it, the winding path of an Angelman syndrome caregiver becomes a tad bit easier to navigate. My 11-year-old daughter, Juliana, headed off to school this…
I love it when my 11-year-old Angel Juliana attends summer camp. But I found out the hard way that too much of a good thing can change the course of an entire school year. A few years ago, we had our worst back-to-school experience to date. It’s one I won’t…
When raising a child with Angelman syndrome, run-of-the-mill products don’t always provide what you need. That isn’t always a bad thing, though. Not finding what you need could serve as a catalyst to release creativity you might not have known you had. Some of the best creations come from necessity.
Ask an Angel’s parent if their kid loves water and you may not get the answer you expect. Do most children love water? Probably. Are all Angels fascinated with water? Perhaps. My 11-year-old daughter, Juliana, is one of those Angels who love water play. Shortly after her diagnosis, I…
Early intervention efforts for my 11-year-old daughter, Juliana, who has Angelman syndrome, were not greeted warmly in my house. I can admit that now. These early intervention services included in-home therapy and pre-K programs for babies and toddlers with special needs. The fact that I didn’t previously understand the process…
Independence is surely one of those things that can be taken for granted. In the U.S., we celebrate our freedom on Independence Day, July 4, but this time of year also makes me think about the independent strides of my 11-year-old daughter, Juliana. Made for walkin’ Juliana has…
Managing caregiving with daily living is truly a balancing act. There are personal responsibilities that must be met in addition to managing the details and care of another person. Another me to do the laundry In an ideal world, I would have a clone. My clone would handle all the…
A lifeline can come in many shapes and forms. In this instance, I’m not referring to one on a game show where you call a smart friend and they help you with an answer. I’m speaking of the ones that improve the lives of special needs families. Sometimes these…
Isolation for caregivers can be a real thing. However, I apply my glass-half-full observations to help me battle this unwanted occurrence. Limited interaction or activities outside a caregiver’s immediate home can certainly lead to isolation. Managing regular activities may be difficult, so some caregivers and their families may choose to…
Recent Posts
- Angelman syndrome has shaped how we celebrate our son’s birthday
- MVX-220 Angelman gene therapy trial enters first human testing
- Recognizing the importance of exercise for Angelman caregivers
- When the world forgets our children
- Dosing begins in broader trial of Angelman syndrome therapy
- The guessing game involved in caring for a nonverbal child
- MVX-220 for Angelman syndrome earns FDA fast track status
- Starting seizure medicine has us grappling with anxiety and doubt
- Genetic medicine could target Angelman’s root cause
- ‘Urgent need’ for treatment drives GTX-102 study enrollment