Let the Games Begin

It’s that time again, snow and ice and bitter cold. Turkey dinner, latkes and gingerbread. Colored lights, carols and Christmas trees. I love the holidays, all of them. I love cooking and shopping and decorating. The sparkle and glow. All the things that agitate and over stimulate my daughter. The sugar, the lights, the right gifts, the wrong gifts, the waiting and the expectations. Too much noise, too many people and too little time.

This will be a sad holiday season for us. The first without my mother-in-law. The first without any grandparents at all for my daughter and a huge loss to bear. But for many years now, we have spent our holidays as quietly as possible. It is one of those changes in lifestyle that happen in the lives of families living with children with special needs. Thanksgiving has turkey and all the trimmings, but it’s just the three of us. Our daughter can handle that – usually.

Christmas is more of a challenge. Our family, though not large, is generous. Packages flow in and brightly wrapped presents pile up under the tree. My daughter and I love our angels and villages and bells; the menorah on the china press, the stockings by the fire and everything that happily clutters our home for the month of December. We have made a ritual of doing things in a predictable sequence: first lights on the tree, then ornaments, then bulbs. We break things down into manageable steps: one day for the villages another for the reindeer. Each year we select a color scheme, a sensory diet of Christmas colors against the muted creams and greys of our living room. Maybe this year will be red and gold to help keep us warm in what seems to be an already extremely cold fall. We use visual cueing: an advent calendar to help with the long wait ‘til Christmas Day, and repetition to facilitate transitions: “first comes Hanukah, then Thanksgiving, then Solstice, then Christmas. And through it all we hope for snow.

Christmas morning always begins by 6:00 am with thumpy feet, clicking dog nails and racing through the hall, down the stairs and back again. As a stocking full of goodies from Santa and Mrs. Claus is ripped open and everything edible is devoured, I roll over and endeavor to sleep another hour before heading down to begin the day in earnest.

Somehow breakfast is accomplished: eggs, potatoes, sausage, fruit and a special Christmas sweet bread. Then everything falls apart and chaos reigns. After a morning of ripping and tearing, laughing and tears, begging and raging, photos and phone calls, exhaustion and swearing we will never do this again, we order our daughter to her room and collapse in our corners, asking why we imagined it would be different this year and what time do we need to start the roast.

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