The Agony and The Ecstasy: We are back. A week spent in Florida with our daughter and our niece whacked me with the good and the not so good of special needs vacationing. I am always reluctant to describe our daughter’s “mishaps” or “screw ups” to illustrate why she is “special” but in the service of reaching families with similarities, there is no other way.
The Ecstasy: First the good stuff. No one is more fun than our daughter and the dynamic between her and our niece remains, thankfully, intact, which is to say, hilarious. Both girls are playful, our daughter can be outrageously so and our niece combines droll wit with the roll of the eyes and a comedic timing that leaves us all doubled over in laughter. When visiting Jungle Gardens, a bird zoo of sorts replete in flamingos, a dozing owl and loads of parrots, at the outset our niece made clear that she was terrified of snakes, yet ended up enduring 35 minutes in the reptile house when a tropical deluge interrupted our tour. While our daughter scrutinized every snake, lizard and baby alligator, our niece winced as the zookeeper shared a convoluted embrace with a ball python, and displayed the Moroccan Spiny-Tailed Lizard, a creature with an extraordinary spiked tail who cohabits with a scorpion (quite a symbol when you consider that our daughter’s birth sign is scorpio). The two girls delighted in the irony of this imposed lockdown, Hell for one, and Heaven for the other.
Squat and Leap: Water play remains as it did years ago, with our daughter’s unforgettable squat and leap into the pool, and our niece’s accurate imitation of said leap. Scooping up her cousin in the water, our niece plays momma bear to her significantly heavier “baby bear” cousin, both giggling as one protests and the other transports. Nachos and virgin strawberry daiquiris are shared and shopping forays end up with ample photo ops of the girls making faces at each other. Back at the rooms, while each sits in front of their laptop screen, they periodically remove ear buds to cackle over boys, texts, and the latest movie star scams.
The Agony: But then there is the other part. While I was taking a walk on the beach, our daughter and niece came running to find me. There has been a moment, the shower flooded the bathroom and the dad got mad. Our daughter had mucho loud complaints about her dad protesting the flooding yet this was the second such event, after time was spent teaching her how to operate the curtain/shower situation with instructions not to take a shower unless we helped her. She knows the basics of bath and shower, has for years. Yet what is “special” here is that each shower or bath is a conceptual and mechanical challenge. As is getting in and out of a car on the street. When we parked in town, she opened the door on the street side while a car was passing thankfully at a gentle speed behind her. “Teaching” and “training” over the years what is safe and dangerous while navigating the car/street interface, does not stick.
Boundaries and Empathy: The young ladies shared a room with two single beds. Despite what would seem to be a perfect setup for both girls, our daughter kept her cousin awake most nights by a variety of behaviors including restless awakening in the night, sitting up and looking around while clicking her nails, and jumping into her cousin’s bed, where she hogged all the covers virtually forcing her cousin to move to the other bed, now fully awake. Out of seven nights, I found our niece on the living room couch probably five of the nights. Appropriate boundary setting and empathy for the needs of others can pose another cognitive challenge at which our daughter falls short. This morning our niece left our home to travel 3 states north, exhausted, bound for her own bed and a good night’s sleep.
Traveling With Disabilities: So much has improved over the years that registering anything resembling a complaint is misleading. Our daughter is great on a plane, provides humor and adventure, utilizes technology for self-entertainment well, and is ever curious and ever learning. When we had an hour’s delay at the airport, there were no melt downs. During our times just “hanging out” at the condo, she watched “Band of Brothers” on her computer screen, while dialoguing with her dad about the battles and the pivotal moments in the lives of the soldiers; yet she needs a shadow all the time. Whether inside or out, there are moments when something can happen, and someone needs to be there to prevent it, interrupt it, solve it or pick up its pieces.
A Loving Shadow: Hopefully there will always be as good, competent and loving a shadow in our daughter’s life as our niece has been through the years. Fingers crossed.
Thank You, Rosa!
©Jill Edelman, M.S.W., L.C.S.W. 2011