With Ronan’s needs and with my husband’s busy work schedule keeping him busy, it isn’t easy for us to go out of town. Since we need a break from life’s demands every now and then though, we do make sure to get away when we can. We managed to do that over the summer. That trip, which couldn’t have been more perfectly timed, was a godsend. Having the chance to go back home, to catch up with friends, and to be back by the ocean where we all thrive, filled our souls with hope.
Since I didn’t know when we’d have time to repeat that sort of respite we so desperately needed, I held onto the memories from that last trip. Sure, there were moments of stress while we were far from home – regressive non-verbal and sometimes aggressive autism is still regressive non-verbal and sometimes aggressive autism no matter where we are, but we experienced more moments of peace than moments of frustration.
That peace brought hope. That hope brought a sense of calm. That calmness, manifested both physically and mentally, gave me strength. As strong as I may seem to some people, I need encouragement to keep my chin up and to keep going forward.
Even though vacation can be stressful – the planning, the traveling, the new surroundings, the unpredictable behaviors – the positives that come from being able to walk away from the daily grind far outweigh the potential negatives. Remembering just how many positives we all experienced the last time we took a vacation, when I realized that we might be able to get away for Christmas, I welcomed the chance to do just that.
Not only did we get the chance to tiptoe out of town, we ended up at the beach again. It wasn’t the same beach that we went to last summer, but we breathed in that same ocean air. We felt that same ocean breeze. We enjoyed that same sound that the crashing waves make that I love to hear. That was all the same, but something was different. We were surrounded by family at this beach, family who want nothing more than for us to be able to stop, to rest, and to just be.
To just be.
That isn’t always a possibility with life with regressive autism, but with more hands on deck to help us keep Ronan happy, safe and cared for, we could just be, and we did get the respite we so desperately needed. I know that other families will not be so fortunate. This weekend, parents were left to manage their child’s aggression on their own. They were left to handle the self-injurious behaviors on their own. They were left to find respite through an agency instead of with a relative. It’s got to hurt when family doesn’t pitch in. Some family members may not recognize just how intense raising a child with autism really is, but for those who do and who refuse to lend a hand add to an already heavy burden.
That heavy burden. Of course, I’m not referring to the child, but to the amazing responsibility of raising the regressive non-verbal and sometimes aggressive child with autism. The responsibility is nothing I ever experienced before having a child with autism, but it is one that I have taken on. I may not always do things for Ronan well the first time, but I try my hardest to make things better, easier, and more manageable. I do that with whatever grace and hope I can muster and always with his needs in mind.
Bringing Ronan hundreds of miles away from the comfort of our home and to the beach where he thrives, where the ocean air somehow washes some of the physical and emotional pain away, where we could be with extended family who embraces all that autism has done to our family was just what he needed. It was just what I needed, too.
Cathy Jameson is a Contributing Editor for Age of Autism.