When this conference was first mentioned, it sounded amazing, and I was so grateful for the opportunity. However, I didn’t quite know what to expect.
It was something far out of my comfort zone. Don’t get me wrong—I love talking about my experience as a parent of a child with cerebral palsy, among other diagnoses. But standing in front of people—not just ordinary people, but specialists in their fields, researchers, professors, doctors, physios, OTs, and other parents with experience—was more than a bit scary.
Even scarier was the thought that I might not have made it there, as a week before, my son was admitted to the hospital after having cluster seizures. He has a diagnosis of epilepsy, but this type of seizure was a first. Thankfully, it turned out to be just his seizures evolving, not an underlying infection, which is usually the cause. After an increase in medication, he was back home again—very tired and worn out from the medication and the hospital stay. With that all sorted, it was finally time to head to Germany.
We arrived on Thursday evening, and it was so lovely to meet so many friendly and knowledgeable people who made me feel at ease right away.
I no longer saw these people as professors, researchers, doctors, physios, and OTs. Instead, they were teams from across the globe, all there for the same reason: to improve the lives of these children and their families.
Friday came, and I was up at the crack of dawn, as usual. But with no medication to prepare or PEG feeds to give, I managed to sleep a little longer. I woke up feeling refreshed and looking forward to my first talk, which was fascinating and encouraging for both myself and my son, as it was relevant for his next steps toward adulthood.
I attended a few more talks and learned about Baby Ubuntu and similar initiatives. In between sessions, we met some amazing people who took the time to explain their research and outcomes. They also asked about our children and families, and everything felt so genuine. Sometimes, when talking about my child, I can tell that after a couple of minutes, the other person just doesn’t get it. But everyone here truly understood—whether or not they were parents of children with disabilities. They just got it.
Then it was our turn to speak. I must admit, it was a bit of a blur. I was so nervous and trying to hold it all together. But when the photo of my son appeared at the beginning of the talk, I thought to myself, “This is all because of him and others like him.”
It lit a fire in me, and I now feel a deep need to do more because I’ve seen how invaluable our lived experience truly is.
And my children and husband survived without me. 😄
Keely Thomas and Alea Jannath, Encompass Parent Partners presenting at the conference in Heidelberg, Germany
Stewart Drew, Kirsten Prest, Alea Jannath and Keely Thomas at the conference. Stewart, Alea and Keely were all trained by Kirsten to become Encompass facilitators
Keely, Alea and Kirsten at the conference
Keely, Kirsten and Alea with the Baby Ubuntu team, the programme that Encompass is based on