Family vacations are a fantastic way for everyone to come together to relax and enjoy each other’s company without all the pressures of our daily lives. And while vacations may look different for each family—camping, trekking overseas, the beach, short day trips—it is truly all about the memories that are formed during these special times. But whatever vacation looks like to most families, it is never quite so easy to pull off a trip when you have a special needs child and/or adult that you want to have join in the fun. Vacations are never taken for granted when you have a loved one who needs extra help. It is honestly something that just many times never really happens for these families.
Such is the case with our family. My husband and I have an absolutely remarkable child, Jonathan, who just happens to have multiple disabilities (with an autism diagnosis being one of them) and because of the challenges we face with him, we have never found a vacation destination that we could all easily enjoy for a few days at a time. He tires easily, cannot participate in many activities the same way that other children can, cannot communicate verbally, and needs someone to be with him at all times.
The year my mother-in-law turned 75, she wanted to take the entire family on a cruise. The very thought of this filled me with dread. How could we take Jonathan? There are so many people on the cruise … what if he gets out of our sight for even a moment? He wouldn’t know where to go and he wouldn’t be able to ask for help. I was filled with dread. On one hand, we wanted to be part of the trip, but on the other we didn’t think it was possible for us. We have missed many family get-togethers due to the distance, or the need to fly, or because our son wasn’t doing well at the time, etc.
We wanted so much to join in the family celebration, so I started to have hope when my sister-in-law mentioned a group called Autism on the Seas (AOTS). Apparently, AOTS helps families just like ours – those that simply want to take a vacation, but struggle to do so because of the challenges they face with their child. As I looked at the AOTS website and my sister-in-law continued to encourage me that everything would be okay, from somewhere deep down inside I came to realize that if we didn’t try, then we would never know and we would forever be stuck wondering if this organization would have been a fit for our family.
What if it doesn’t work?
After speaking with an AOTS representative, I began to feel better and much more “brave” about our decision to try the cruise. But in the back of my mind, I secretly kept wondering …. what if it doesn’t work? What if it is too much for him? We are all stuck on the boat for five days … what do we do if things go awry?
We decided to move forward but we still weren’t sure what to expect so we brought along an aide who knows Jonathan almost as well as we do. She knows his signs/requests, she knows when he needs a break, she knows when he is tired, etc. I was sure that she would be the one helping us and that I would never feel comfortable leaving my child in the hands of people that I don’t know. I imagine it is tough enough to do that as a parent of a typical child, but when your child is 15 and can’t speak or tell you anything about his day, it takes this fear to a whole new level!
Just like any other family
I was wrong. The AOTS organization was phenomenal! I cannot begin to tell you what a liberating few days at sea our family was able to have. For once, we were a family just like any other family. On vacation, enjoying our time together, having fun, and knowing, most importantly, that our child was having a blast! AOTS provides priority boarding which allowed our son to slowly acclimate to the ship instead of being thrown in with everyone else which would have overwhelmed him. We chose a cruise that left from a port within driving distance from our home, so that alleviated the whole airplane issue as well.
We also had a special first evening onboard when the whole AOTS group had its own bon voyage party. We met the staff members the first night and were able to share the necessary information about Jonathan so that we could feel comfortable with them and have them feel comfortable with our son, as well. We did choose to have his aide assist Jonathan with most activities the first day. But AOTS staff members were present at all times. Around midday on the second day onboard, we started to join in on some of the activities that the group had to offer.
The staff was terrific – they were teachers, teacher’s aides, therapists, etc. And they were all volunteering! Every staff member worked with special needs children and/or adults in some way and they truly understood some of the challenges they might face during the week. But this group also had interacted with enough parents to know just how exhausting raising a child with special needs can be and it brought them great joy to be able to give all of our families within the group some relief and respite that we so very much need but rarely ask for!
If we wanted to eat breakfast, they were there to help us out if we wanted any assistance or just an extra set of hands. We also had a private dining room for breakfast, so we didn’t have to brave the throngs at the buffet lines. When we were sailing, they were there to help Jonathan in the swimming pool, which he loved! If we wanted an evening out, they were there to help provide respite care for us. They had special activities all throughout the day in which our son could fully participate and feel part of the bigger group. While our son joined us in the main dining hall in the evenings, some children were not able to do so and the staff was there to provide help to those families and allow the parents to have an enjoyable “typical” night out.
And what attention to detail by the staff. As I previously mentioned, we were able to talk with the staff and have them come to know our son’s likes and dislikes. One evening at dinner, I looked up and saw three staff members racing towards our table and saying, “we have to get him out of here.” My husband and I were confused as he was doing so well at dinner and we had just been commenting on that fact. The staff members saw a server walking toward another table with a birthday cake. The staff knew that Jonathan dislikes the “Happy Birthday” song for some reason, so they were rushing over to take him out of the restaurant so that he didn’t get upset. They even stopped the waiter and asked him to wait just a few moments. I found that to be remarkable!
And there were many, many tears during our five days onboard. Good tears! Tears of relief that we were able to join our family and enjoy the week with them; tears of joy that our son was having a blast; and tears of admiration for the team that AOTS had assembled to help not only our family, but all the others like ours.
“I have never been so happy”
There was one moment in particular that I will never forget. On the third night, I felt so comfortable with the staff and we could tell Jonathan was enjoying his time, so I did what I said I would never do. We took advantage of the AOTS respite care and let him have a night with the staff. We had his aide join us so that she could have an evening out as well.
I remember our family was playing trivia in one of the taverns on the ship and for whatever reason I felt compelled to look to my right at what was apparently just the right moment. When I did, I saw Jonathan and one of the staff members walking arm-in-arm, and both were physically bent over in laughter. He was having a blast! He didn’t need us for a while! He got to be a big kid and went to see a show! It allowed him to have independence and be with one of his new “friends” without mom and dad, for once.
I will never forget just watching him laughing and beaming as he walked right by us and didn’t see us because he was having such a great time. I have never been so happy! I thought my heart was going to burst with joy. The memory still brings tears to my eyes as I write this.
And that is what vacations are all about – the memories! And I will forever be grateful to Autism on the Seas for their fantastic organization, and for allowing us, if only for a short time, to fit in with all the other families on the boat, and enjoy that special time and build those fantastic memories!
For more information on Autism on the Seas, visit autismontheseas.com or call 800-516-5247.