Our family has a saying whenever one of us is complaining about being slightly inconvenienced: we are a team. It’s so simple a metaphor for family drama that it’s almost embarrassing. But therein lies the Ted Lasso appeal—the simplest, most honest approach is often the best one. Think of your favorite soccer/football/basketball/baseball team. Or if… Continue reading Here’s How We Turned our Family into a Ted-Lasso Worthy Team

The Jeep had no windows. And no roof – well, a tarp, but that hardly counts. It stood so high off the ground that our guide with the deep sunburn and Australian accent had to fetch the step stool for my seven-year-old twins. I was beginning to regret the big Colorado adventure I had promised… Continue reading Colorado Brings Adventure for Boy with Cerebral Palsy

The room was loud, concert-level loud, which is what happens when you fill any space with  nine-year-olds. My eardrums thrummed and my heart skipped a beat before it began to syncopate with the slamming down of books and backpacks and excited shouts of kids. I handed over Charlie’s bag and lunch and I steered his… Continue reading Am I Too In Tune With My Child’s Emotions?

When we are faced with news or experience of loss, whether physical or perceived, we respond with shock and disbelief. We then experience all of the emotions that flood us while we are trying to accept a reality that we did not want. As parents, when our child or children are diagnosed with a medical… Continue reading Grieving the Loss of What You Thought Would Be

When I was a student in school, students with disabilities were placed in a separate class, they traveled together around the school building, and everyone knew who “they” were. Terms such as “retarded,” “stupid,” or handicapped” were used so often. As a I type these highly derogatory terms, my skin crawls.  Over the years, our… Continue reading Which Terminology Should I Use – Special Needs or Disabilities?

When my son Charlie was born with Beckwith-Wiedemann syndrome, a rare genetic disorder that resulted in an enlarged tongue, we spent months in the neonatal intensive care, working to discover a safe way to protect his airways so we could bring him home. The end result after twelve weeks of false starts was a tracheotomy.… Continue reading Your Trash Tells a Story. Here’s Mine.

Occasionally and erroneously, I forget how much harder my son Charlie’s life is than his peers. Yes, he has cerebral palsy and he uses a wheelchair to move and a speaking device to communicate. But Charlie is happy and healthy and thriving in his home environment. He participates in every activity as the rest of… Continue reading Disabled Rights Shouldn’t Have to be a Fight

Numbers help us evaluate learning in school and health and unemployment rates and so much more. They give us important data. But they are not everything.

If you have trouble expressing your emotions, the crying map might help. Because grief, especially over all that the last year has taken from us, will have to be processed one way or another...

One lesson we have learned in caring for our child is that nothing, absolutely nothing, should limit his ability to live the best possible version of his life.