Holidays are a time for family and gratitude. For family members who we see only a few times a year, it can be hard for them to understand our unique experiences as parents of children with disabilities – and it can be easy for them to make judgment on us, our relationships with our children, […]
Learning about and understanding my son’s diagnosis has changed who we are as individuals, as parents, and as a family. I’m sure it has for you, too. Above all, it has allowed us to strengthen our relationships with each other and with the world in ways that we wouldn’t change.
Everybody loves to win. Children naturally infuse winning into their day; “First one to the slide gets (fill in the blank)”, “My (fill in the blank) is (better, bigger, stronger) than yours!” I’ll admit, as a mom, I do it too! I almost always regret it, but when the three boys take on sloth-like qualities […]
The stress, emotion, and confusion that accompany a diagnosis for your child can be overwhelming. We are excited to share an article by Ricki Meyer, Exceptional Lives’ Director of Policy and Legal Operations, that discusses how our free resources can help parents and caregivers navigate the various disability systems and accompanying emotions upon receiving a diagnosis […]
This week, our son Jack returned to school after 6 months of medical leave. In November 2016 he developed an infection that led to PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections). As time went on, we learned that strep was not the only trigger for the flares, and he was diagnosed with both PANDAS and PANS (Pediatric Acute-onset Neuropsychiatric Syndrome), […]
Around the United States, families are getting ready for the first weeks of school. Our family is in the middle of helping our oldest son re-enter mainstream school after a semester of medical leave, while also preparing our daughter to begin kindergarten. As soon as August arrived, we felt the stress rise.
I held his hand as the anesthesiologist put a small mask over his mouth and nose, and I watched him fall asleep. I squeezed his shoulder and kissed his cheek as his eyes lost focus and gently closed. After four days of GI, my oldest son, Jack, was “under” for his colonoscopy and endoscopy.
There is judgment that comes with being a parent. There is judgment that comes with being a parent of child with special needs; a child who continually throws sand at the playground, can’t sit during mealtime, doesn’t answer when you ask a question (over…and over….and over again), or kicks and screams when things don’t go […]