It has been nearly a month since we returned from our month-long journey to Ecuador, South America. From the beginning of the planning process, my son Sebbi was determined to come along despite my daughters' opposition. They had experienced firsthand how challenging it can be to travel long distances with him. For those unfamiliar with my blog, Sebbi has Prader-Willi Syndrome, severe autism, and significant learning disabilities.

The occasion was too special for Sebbi to miss—my mum was turning eighty, and all my siblings were planning to attend, with some travelling from the USA. The last time we were all together in the same place was nearly forty years ago, so this was an event we couldn’t miss.
We began planning the trip six months ago, carefully selecting the best flight times with a stopover to ensure Sebbi wouldn’t get agitated during the journey. Unfortunately, despite all this preparation, the airline changed our flight times three times leading up to the departure date, and there was nothing we could do about it. To complicate matters, we were trying a new medication designed to help with Sebbi's extreme anxiety.

On the day of the flight, we administered the medication for the first time. It worked initially, but we were uncertain how it would hold up during a long journey, which added to our concerns. The flight left on time, but the medication began to wear off after six hours. One of its side effects was bloating and discomfort, which Sebbi also experiences with his thyroid medication, compounding the issues.

Upon landing, we encountered another setback: the nearest gate was unavailable, forcing us to use a different exit. This upset Sebbi, leading to three hours of tantrums at the airport while we waited for our connecting flight. The medication prescribed for Sebbi can only be taken twice every twenty-four hours. Since we had already administered it twice, we worried he would be too stressed and uncooperative for the airline to allow us to travel. This situation was incredibly stressful for all of us.

Despite these challenges, once we reached our destination, Sebbi had a wonderful time. He enjoyed exploring, meeting family members, and having fun. All the adventures disrupted Sebbi's routine, and he quickly gained weight, leading to frustration with anything that was not as he expected or perfect.

The return journey was another challenging experience. We had to break his medication doses into smaller parts to minimise their effects on his stomach and behaviour. Ultimately, we returned home, and Sebbi was a happy boy again. Overall, it was a great trip, and we were delighted to have successfully maintained his plant-based diet, which helped to keep him healthy.

However, we believe that long-haul travel may need to end for Sebbi. Sadly, the anxiety and potential complications present a significant liability, which is exhausting for both him and us as his caregivers. While I know he loves his family and made the most of every moment with his grandparents and relatives, our challenges have made us reconsider future long trips.