Standing in the splash pool today on an anonymous cruise boat, I watched Amos run around and I happened upon another child who appeared to have special needs. Rather than stare or ponder, I made my way over to her mom and said hello. One thing I have learned is that moms of kids with special needs are very approachable and long to be greeted and engaged in conversation. A good friend shared with me recently that nothing made her more sensitive than a family that stopped, stared and ignored her precious child, who has a variety of special needs. There is not a mother out there who longs for her child to be stared at or ignored, yet mothers and fathers do this when they encounter a family or a child that is not quite perfectly average. I once was one of them, one of you, a member of a typical family. All families have their own baggage but not all families deal with the special needs that can isolate, tear down and destruct our very existence. To be stared at or ignored is too much to bear for any Mama. I will share some simple instructions of what to do if and when you happen upon an extraordinary family. Do not pretend we are not there, say aloud to your children, "Let's say hello!". That tells me that we are not invisible to you, we so want to be seen and we are just like you, enjoying a walk out in the lovely sunshine after weeks of endless cold rainy weather. Don't make me own the awkward silence, I get tired of speaking first, having to break the ice. Make small talk with me even if you are not particularly extroverted, it tells my friend that her family fits in this world and that her daughter is more than just an object of speculation. Ask questions, talk to my child even though he may not answer, he is still a person and all of us are entitled to a bit of kindness.
Teach your children to say a personal hello too, to share the thoughts that may seem too blount or embarrassing to you, I value honesty and open communication. It tells me you care not only about my family but about the children you are raising and the kind of people you expect them to be. Don't err on the side of caution; it's okay to acknowledge our reality. If you encounter us on the sidewalk, please don't just say to your paused children with gaping mouths, "Go ahead, let's keep moving". My heart broke for the friend that heard these words recently and I could feel the sunshine of that day being blacked out by the tornadic clouds always looming on the horizon, the clouds of exclusion, solitude, and worst of all, loneliness in a sea of humanity.
I notice the clouds overshadowing my family already, as I feel forlorn watching the other one and two year olds dance and stomp in the spray water area, overhear their anxious mothers who are in the midst of potty training, and listen to little voices ask about Mickey Mouse. Rather than feeling pitiful, I have chosen to engage with the families around me, particularly the ones, like ours, with children who did not fall perfectly into this world. This week alone we had so many instances of lovely inclusion or maybe it was just my view, happy to approach another mother whose young daughter had the pink of Amos' white glasses. Another mother gave me a high five when I shared that Amos had been approved for his evaluation of an augmentative communication device. I didn't feel my typical sinking despair as I analyzed the other seemingly gifted two year olds we encountered everywhere on the large ship. No, that feeling was overshadowed by my relief in finding the mothers who offered tips and didn't go out of their way to tell me that Amos was so cute (sometimes it makes me feel as if he has no other qualities). With a renewed spirit, I coached my own ten year old son on befriending another boy his age whose excitement was more gleeful than his own, perhaps due to the autism we thought. I noticed as my son clapped enthusiastically when that same boy rode on the almost translucent belly of a dolphin named Lucky. After a late afternoon swim, I approached a couple and their adult daughter, who was sitting in a wheel chair and eating pizza. I spoke to her, a bit older than myself and told her I had seen her the night before at the 8 o'clock show and that we had enjoyed it. She looked at me and mumbled a response though I couldn't decipher what she said. I encouraged my daughter to share what had been her favorite and the woman's eyes visibly lit up, this woman that could have been me, a mother to four children, but her fate had been different.
Her parents seemed eager to chat and I thought of how they must feel, on a large boat full of extended families with young children. Yet, here they were, not much differ bet than us other than age, from another small town in NC and on their very first Disney cruise. The woman's mother told me that her daughter had graduated from college with a degree in social work and a minor in psychology but that her physical limitations inhibited her working, not to mention her newly broken left ankle. Her speech was greatly lacking due to the almost non-existent air pressure to create sounds. Oh, exactly the description for my Amos' speech. No ability to blow bubbles, saliva or ones of soap, never had done the typical baby raspberries, and struggled with any word except for his perfect pronunciation of Mama.
As we prepared to leave the pool area, the kind mother asked me my name and then introduced herself, her daughter, and her husband. She carefully gave me each of their names and asked for each of ours. As we said our goodbyes, she said deliberately, "Thank you for speaking to us". I can't remember what my exact response was, something along the lines of it being our pleasure, but I left feeling a bit empty and this evening feeling strong and deliberate. I vow to always take advantage of an opportunity to speak to a family that may sometimes feel invisible and lonely too.
In her well-chosen words, I heard or perhaps just imagined what may have been an empty week for them, perhaps too shy to approach others who they shared little common ground. A couple in their seventies with an only child, she with special needs, and on their first Disney cruise. They had not chosen the easy path, certainly staying home would have been less trouble but in venturing on a journey around Cuba, I hope they were struck by the same thought that I had. Perhaps we are actually all more alike than we sometimes care to ponder, one inch or minute away from a myriad of special abilities? May I never forget my wise friend's advice that reminds me the intrinsic value of the kindness and love in the simple phrase of "Let's say hello!".