Inaugural parade, special needs kids worst nightmare!

What does it take to organize a weekend trip to Williamsburg? Now, multiply those arrangements by 65, including lots of kids -- almost 30 with special needs.When Mary's Family was invited to participate in the governor's inaugural parade in Williamsburg, it was an honor for founding director Martha Toomey.

She had about 30 seconds to sit around feeling honored. Then the work started.Visions of her organization marching to band music under sunny skies, waving banners, quickly gave way to special-needs nightmares. Colonial Williamsburg, after all, is not exactly wheelchair-friendly. In order to authenticate a Colonial-period town, the stores, houses and restaurants are built with stairs -- not ramps -- leading to their entryways. And a parade, with its accompanying noise and confusion, is not conducive to children with autism, who can become upset by loud noises or crowds.

But Toomey is not easily deterred.Toomey spent countless hours arranging ADA-compliant hotel rooms, refrigerators for medications, and special permission to keep goats (they were walking with Mary's Family in the parade) in a $170-per-night hotel room; talking with parade organizers; arranging for tickets to the inaugural concert; setting up an appointment with Virginia's first lady Anne Holton; arranging for transportation in Williamsburg that could accommodate wheelchairs; and keeping the families in the loop.

Planning to leave early Friday morning, Toomey received word Thursday afternoon that 5-year-old Emily Gutierrez, one of her parade leaders, had been airlifted out of Coleman Elementary with a severe seizure (see accompanying story). Heather Stubbs, whose brother Michael has autism and whose whole family planned to march in the parade, came down with a stomach virus at the last minute. The Rev. Jim and Dale Cirillo of Grace Episcopal Church had a parishioner lose a child, and then a volunteer lost his grandmother Friday morning.Just getting out the door would have been enough to force the faint of heart to throw up their hands.

But not the folks who make up Mary's Family. Every single family made the trip. Changes, challenges and shifting plans seemed the theme for the weekend, with Toomey's cell phone ring tone as the soundtrack.A delicious -- but dizzying -- dinnerTwelve of the Mary's Family entourage made reservations at the King's Arms Tavern, a fine dining restaurant in the heart of Colonial Williamsburg, complete with service staff in period costume and entertainment. With reservations set for 5 p.m., Toomey thought they would have plenty of time to eat before their next event -- the inaugural concert, featuring the Beach Boys, scheduled for 7:30 p.m.

"Some of us have autism, and some have wheelchairs, and let's see, what else? Spina bifida, and seizures and some of us are just plain crazy," Toomey explained to the waitress, relaxing into her chair.But just after the menus were distributed, Toomey's cell phone starting ringing again. This time, it was a representative for the governor-elect's wife. If Toomey and the kids planned to present Holton with the Hawaiian leis they had made for her to wear during the Beach Boys concert, they would need to be at the concert hall in exactly 35 minutes. That gave the party of 12 only 35 minutes to order, be served, eat, pay and get to the concert hall. Seven-year-old Chad Bobon, who has autism, had gotten his heart set on a cheeseburger, which was not available. Tearfully, he finally settled on just plain fruit.

As the group wolfed down their food and prepared to run out the door, one of the powdered-wig-wearing entertainers entered the room and began talking. Coats were snatched up and the party made a mad rush for the door."I did not mean to frighten you away," the surprised-looking entertainer apologized sheepishly to the fleeing backs. "You are a lovely man, and you truly did not frighten us away," Toomey called over her shoulder as she bolted from the room, accidentally leaving the Hawaiian leis under her chair.Party hearty, Beach Boys-styleAfter going back for the leis and then loading into the van, the company arrived at the concert hall a full 30 minutes late for their meeting with the first lady-elect.

Security still had to be passed and wheelchairs had to be guided over the electrical cords that were gathered into thick trunks backstage.As group members trickled through the security screening, Jeffrey McCord, Toomey's son, noticed a man standing just outside of the backstage area, and asked the man if he was a Beach Boy."No," the man replied, pressing something into McCord's hand. "But I work for them."McCord's face lit up as he looked at the Beach Boys' guitar pick in his palm, and he rushed to his father's side to show off his new prize.

While they waited -- and waited -- for Holton, the kids practiced their handshakes and greetings in preparation for meeting the first lady.Well over an hour passed before Holton and daughter Annella were finally able to make their way down, but the children were thrilled when she turned the corner.They proudly shook her hand, just as they practiced, and presented her with the leis. Then the kids scooted out to join the rest of their group in the arena, and slid into their seats that were right on the floor, less than 100 feet from the stage.

They danced the night away, cheering loudly for each of the acts, smiling and laughing, before sleepily piling into vans to return to their hotel rooms.Parade day pandemoniumSaturday morning, the parade participants awoke to a cold and rainy Williamsburg.At the 9 a.m. meeting time, only five of the roughly 65 participants were at Toomey's room. She had already rushed off in her pajamas to collect the parade credentials, leaving her husband Jeff McCord in charge of the restless families."I don't have a long-sleeve shirt to wear," young Jose Gutierrez told McCord."We have medicines we have to take with food.

We have to go get some kind of food. I can find you all later," said one parent. Helicopters passed endlessly overhead, causing problems for some of the children with autism.McCord passed out granola bars and spare shirts, hoping to keep some semblance of order until Toomey's return."We're just trying to put the 'fun' back in 'dysfunctional,' " he joked, while his son bounced on an exercise ball.

When Toomey returned, she quickly gathered the entire company together as cold rain sprinkled down over the families. She promised them that the rain was going to stop.Families waited for hours until Toomey received the call to line up for the parade, and then everyone bustled down the street to the meeting spot. Even Heather Stubbs, who only moments before had been sleeping off a night spent awake with a stomach virus, joined the party. "Everybody smile," Carina Elgin reminded the participants. "Remember, we're jolly!

Even though it's cold and raining, we are so happy to be here!"The baby goats hid under wheelchairs to escape the rain. Families huddled under umbrellas. Service dogs plopped down beside their owners, resigning themselves to getting soaked.The kids were the next to embrace the rain, abandoning their umbrellas and the adults weren't far behind. With wind blowing the rain almost horizontally, the umbrellas weren't much help, anyway.Spectators, who had watched Kaine's inauguration just before the start of the parade, abandoned the streets of Williamsburg to seek warmth and shelter.

Though the parade route was labeled handicap-accessible, the unpaved Williamsburg streets quickly turned to mud. Wheelchairs sunk into the mud, leaving volunteers and family members to lift the chairs out while trying to keep up with the pace of the parade. As the Mary's Family group passed the grandstand, Gov. Tim Kaine propelled himself out of his chair and waved enthusiastically at all of them."Hi, Gov. Tim!" the kids called as they marched by, waving their congratulatory signs.

As they reached the end of the parade, cold and wet and hungry, the National Guardsmen directing the participants steered them in the wrong direction. The path, wide enough for a single wheelchair and made entirely of mud, sloped down two feet on either side. The participants slipped and slid down the path, only to end up in a parking lot, alone and in the rain. Toomey said, "We'll just keep hiking. Our hotel is around here somewhere."Volunteers had to lift wheelchairs over curbs and ditches, but the entourage finally made it to the hotel.

"I am so proud of everyone," Toomey said. "The bravery you guys showed today by sticking it out through the weather and everyone's illnesses and struggles is just amazing ... I could not be more proud."