Wednesday, March 5, 2003

While most of us have to plan ahead to take our children on theme park vacations, parents of special-needs children have unique challenges. With numerous vacations to Disneyland and Walt Disney World under their belt, three terrific moms patiently share their tips.

Meet Peggy and Kendall

Peggy's 16-year-old daughter, Kendall, has Down syndrome. When asked what Kendall's biggest challenge was, Peggy replied, “Does stubbornness count?” Two sisters and her stepfather complete Kendall's family of Annual Passholders who regularly travels to Disneyland and occasionally Walt Disney World, from their Northern California home.

Kendall meets the Fairy Godmother at Walt Disney World.
Photo by Peggy Giacalone.

Meet Jan and Jack

Jan, her husband, and two sons fly from Colorado to vacation in Anaheim. Younger son Jack's needs are officially defined as “global developmental disability with autistic-like tendencies.” When I asked Jan what her family's biggest challenge is when going to the park, she said, “You mean other than the fact that Jack's absolute favorite thing is the Neverland Pool area at the Disneyland Hotel?”

Meet Margaret and Brandy

Another proud passholder from Northern California, Margaret not only brings her 21-year-old daughter Brandy to Disneyland, but regularly travels with other friends and family members who also have a variety of special needs. Brandy has secondary microcephaly, severe brain atrophy due to lack of oxygen during delivery, severe seizure disorder, profound hearing loss, psychomotor retardation, and hypoglycemia. In addition, she is legally blind. When asked what terms Margaret uses to describe Brandy however, she replied, “Mostly for Brandy I use 'spoiled'!”

Special Assistance Passes

All three families use and recommend special assistance passes (SAPs). These passes allow up to six people to use special entrances to attractions, sit in reserved areas, and often bypass long lines. Down syndrome children have low muscle tone, which makes waiting in long lines very tiring and difficult.

Autistic children may not look like they have special needs, but waiting in lines is challenging for them. They can become loud when they're tired of waiting because they are either overstimulated, or do not understand why they are waiting.

Margaret's niece, Miranda, has fetal alcohol effects. Margaret says that most guests would not want Miranda to wait in line with them. For guests who might question Miranda's need for an SAP, Margaret laughs. “I'll let you take Miranda in the queue,” Margaret said. “If you don't want to give her back in 15 minutes, then I'll buy you lunch!” Jack's experiences mirror Miranda's. At times, Jack may wait in line well, but other times he screams and refuses to wait.

Although they all usually have good experiences asking for SAPs at City Hall, Margaret brings doctors' notes for her niece and nephew, whose needs are less visible.

Peggy uses the SAP for character meet-and-greet lines, although there was an incident when a cast member would not honor it when Kendall wanted to meet Mike and Sully from Monster's Inc.

Not all cast members react this way. On another visit, Peggy told a cast member that she felt a little guilty using the SAP. That cast member replied, “In life, she is not always going to get to be first, and she will have challenges that we will never understand. Why not let her go first at Disneyland?”

“Even using an SAP, we too sometimes have to wait” Peggy adds, “We wait patiently until our turn comes up to get on a ride.”

Wheelchairs

If a child uses a wheelchair, you should not need a special assistance pass, but sometimes it's a good idea to have one, anyway. Peggy often wishes that Kendall would use a wheelchair when she gets tired, but Kendall feels self-conscious in a wheelchair. Peggy recommends using a wheelchair if your child will agree to it.

The attractions at Disney's California Adventure (DCA) park all have wheelchair-accessible queues; most Disneyland attractions do not. Attractions with seating areas such as shows, movies, and parades have special seating areas for those in wheelchairs, but Margaret says, “If I had one complaint about the wheelchair areas, it's that nine times out of 10 they are placed in the wrong area for anyone with multiple disabilities.” Because Brandy is legally blind, sitting in these areas often places her too far away to see what's happening.

Facing medical challenges in the park

Although Brandy does not need a wheelchair regularly, Margaret brings a wheelchair for Brandy at Disneyland because she knows excitement and exhaustion trigger Brandy's seizures. Brandy's recovery time can vary from quick to needing a nap. While the Disney parks all have Central First Aid stations with available beds, Margaret prefers to return to her hotel room when Brandy needs a nap to recover.

Brandy and her cousin stop to see the Big Cheese.
Photo by Margaret Silva.

“I rarely do 'fast, flying trips.' I try to go for at least three days so we can do the park at a very relaxed pace. I've never used the first aid center for seizure recovery because if she is needing a nap, I just take her back to the hotel, put her in her PJs, and let her rest. Then she wakes up ready to go again.”

The Central First Aid centers offer many services. Guests with medications and special diet needs, such as pureed food, can store these in the refrigerators at Central First Aid. The center also has private areas with beds that families can use for older children who need diaper changes. Those beds provide a quiet, relaxing environment for overstimulated children who need a place to relax for a time-out. They are also helpful for situations when children or adults need G-tube (gastronomy tube) feedings.

Although almost all of the public restrooms at Disneyland have wheelchair-accessible stalls, Central First Aid also has large bathrooms that families can use if older children or adults need help in the restroom. The Baby Care Center on Main Street has very comfortable changing tables that can accommodate children until they are about the size of an average 3- or 4-year-old. Pre-schoolers may use the small toilets there, but the Baby Care cast members will send older children to public restrooms or Central First Aid.

Other restroom needs

Although Kendall does not experience the bowel problems that some Down children and adults do, Peggy packed Pull-Ups (toddler diapers) for trips to the park until Kendall was older. Kendall had more accidents at Disneyland than at home because she would wait until the last minute to run to the restroom.

Margaret packs a special kit in a backpack or diaper bag. She carries her bag even when she does not have children with her who wear diapers, because accidents do happen. Margaret's bag contains several chucks (large plastic-backed absorbent pads), a few larger diapers, a few pairs of adult-size rubber pants, a big box of wipes, several pair of latex gloves, some plastic garbage bags for storing of soiled clothes and disposing soiled pads and diapers, and a good supply of sanitary napkins.

Sometimes, Margaret is not near Central First Aid when a child needs her diaper changed. In these cases, she puts a blanket on the floor of a special access restroom stall. Margaret places a chuck on top of the blanket and changes the child there. Margaret explains, “The reason for this is two-fold: they are too heavy for the changing tables, and it protects their dignity somewhat. They aren't out on display getting cleaned and changed.”

Language challenges, sensory overload

Jack speaks in short sentences. Before he had an ID bracelet, Jan taped an identification card on the inside of his clothes in case he got lost. This is a good suggestion for any child. If you carry a cell phone, be sure to put that phone number on a card on your child.

Jack lives in Colorado, but he's a frequent Disneyland visitor and a big Disney fan.
Photo courtesy Jan Cavanough.

Jack is also sensitive to loud noises. For a recent trip, Jan packed earplugs, which Jack wore in louder rides and shows. Jan believes that experience is the best teacher, so she often encourages Jack to try something once. Some rides that she assumed were too scary for Jack, he loved; others he avoids.

Jan's family prefers quiet spots in the parks. They take long meals — especially lunches — at sit-down restaurants, rather than at fast, hectic ones. When Margaret has Miranda with her, they always takes an afternoon break at their hotel. She urges parents to think about how much time they have for their trip, then plan down time into that.

Equal Access

Pinocchio's Workshop, characters who sign, diet issues

Margaret brings a lunchbox of snacks for Brandy because she won't eat the junk food that most of us crave at Disneyland. Brandy's cousin recently told a cast member at the Main Gate, “Don't worry — my brother, sister and I will be buying and eating all kinds of junk food to make up for what she doesn't eat.” The cast member laughed.

Before their last vacation to Anaheim, Jan read about Pinocchio's Workshop on MousePlanet and called the Grand Californian Hotel to make reservations for Jack for this evening care center. Jan took the time to prepare the staff for Jack's visit, and it was a grand success. When Jan called, she notified them of Jack's special needs, since this allows the Workshop to schedule extra cast members for the evening if they feel they do not need them.

Once in Anaheim, Jack visited Pinocchio's Workshop before the night of his reservation to become familiar with the environment. Jan typed up “Helpful Hints with Jack,” a list that she shared with the Workshop director at that meeting. On the night of Jack's reservation, the director knelt down to Jack's level to say hello and good-bye, which was hint number one from his list. Later that night when Jack left Pinocchio's Workshop, he even hugged the director good-bye, which was very uncharacteristic of him.

Some of the best stories these moms have of their experiences at Disneyland involve Disney characters. Like many special-needs children, Kendall uses American Sign Language. On one visit, Kendall saw Cinderella and two mice, and started signing “mouse.” Soon, Cinderella and her mice were signing with Kendall.

Wheelchairs present a challenge when trying to reach characters. On one visit, Brandy's friend Emily wanted to see Minnie badly, but her power chair could not maneuver through the crowd to reach her. The cast members escorting Minnie brought Minnie down to see Emily.

The moms agree that most of the time, cast members are helpful. “Most times I have to give the cast members high praise, but we also don't go in acting like they owe us something,” Margaret said. “We wait patiently and if the SAP line is long, we skip that attraction and do something else. I can count the bad experiences on one hand with cast members, but have totally lost track of all those who have gone the extra mile.”

“Mommy, what's wrong with that girl?”

A bigger challenge than the cast members are other guests. I asked each mom what they would like me to say if Matthew was staring at her child. Peggy said, “I'd tell him to say hello.”

Margaret often addresses stares and questions with the facts. She said, “I would much rather little ones ask why so we can explain, and then all of a sudden it isn't a big deal. I use stuff like different color hair or eyes to explain to the little ones that being different is OK.” Margaret likes to give children information to answer their questions. Along those lines, if Matthew stared at Jack, Jan would tell him, “Jack has autism. When he's nervous or excited, he repeats things a lot.”

All three moms share the same number-one tip: Do not overplan! As Jan put it, “Set a pace that is comfortable for your family, and allows for plenty of breaks and down time.” Margaret suggests, “While you don't want to overplan the trip to the second, major research makes the difference between a disaster and the trip of a lifetime.”

They suggest many other tips, including:

Tony Phoenix's Theme Park Access Guide (here on MousePlanet) is a great place to start. You can also call Disneyland and ask them to send you a copy of the Disabled Guest Guide to help plan ahead.

Peggy's tip

Rent a stroller or wheelchair if the child has a hard time walking, and would be willing to use it.

Margaret's tips

Check into the issues with the rides. If your child has a seizure disorder, avoid those rides that can trigger, such as anything with a strobe or 'swirling' effects (like on Roger Rabbit's Car Toon Spin).

Meals: most of us know what our kids will or won't eat. Do the research ahead of time, know which locations are going to have something your kid is going to like, and plan the day's areas accordingly.

Jan's tips

Allow enough time to see what you decide are must-sees. Know that you can't see everything in just a couple of days. This was true prior to Disney's California Adventure, and is even more true now that it has opened.

I've found that research is critical in deciding what we do at Disneyland Resort. Is something too scary for the majority of us? Do the majority of us have no interest in doing a certain ride or activity? Do Mom and Dad want a break? Know that you can always come back to Disneyland, even if you live as far away as we do. It's not going to move, for Heaven's sake — “There's always next time”.

Now, a caveat to “there's always next time”: All the desired activities may not be there next time. For example, our last trip was at Christmas time. Despite being long-time residents, none of us had seen the park at this special time of year. Who knew if we would get back for Christmas time again? Therefore, we focused on the holiday activities. Yes, we painted cookies (OK — my teenager thought we were stupid but Jack loved it), made sure to see the fireworks in the sky and the snow on Main Street, and so on.

1. Go during the off-season: The crowds, the heat and the more expensive prices of high season are not the best time to go. Go in the spring or fall or, to take advantage of the Christmas extravaganza, right after Thanksgiving. You'll save money and time, and will be less stressed. By all means, take the children out of school. Travel for any child — but especially for a child with autism — can be educational, can help in social development, can help them become for flexible, and can be just plain fun! I've had several teachers, recommend travel with Jack, so leave the guilt at home!

2. Take lots of breaks during the day. Be at the gates prior to opening, and tour the “heavy hitters” until crowds start to build, and then go back to the hotel for naps, swimming, rest, and destress time. Then go back to the park in the late afternoon. Even true for off-times of year, but especially if you must be there on a weekend, or during the summer or school holidays. “Heavy hitters” can vary due to the age and interest of your child and family. Toontown and Fantasyland for the younger crowd and “the biggies” such as Splash Mountain, Space Mountain, Haunted Mansion, Indiana Jones Adventure... Everyone needs down time, but perhaps no one more so than your child with special needs.

3. Pool: Most kids love the pool, but it's possible for children with autism that the hotel pool is their favorite thing on vacation (it definitely is the first thing Jack asks for when he knows we are going on a trip). Take the time to use the hotel pool. Many Southern California hotels have indoor pools so you don't need to worry about the weather or the time of year.

Contact Adrienne Krock at adriennek@mouseplanet.com.

What makes these wonderful kids special?

Kendall, Peggy's 16-year-old daughter, has Down syndrome.

Jack, Jan's son, has a “global developmental disability with autistic-like tendencies.”

Brandy, Margaret's daughter, has secondary microcephaly, severe brain atrophy due to lack of oxygen during delivery, severe seizure disorder, profound hearing loss, psychomotor retardation, and hypoglycemia. She is also legally blind.

Visit these sites for more information:

On Down syndrome: National Down Syndrome Society

On autism: Autism Society of America

On microcephaly: The National Institute of Neurological Disorders and Stroke's microcephaly information page

On hypoglycemia: Hypoglycemia Support Foundation

On fetal alcohol syndrome: National Organization on Fetal Alcohol Syndrome. Note: Fetal alcohol effects has been used to describe children who have some, but not all, of the clinical signs of Fetal Alcohol Syndrome. The CDC reports that because experts in the field were unable to agree on a single definition for FAE, the Institute of Medicine (IOM) proposed the terms alcohol-related neurodevelopmental disorder (ARND) and alcohol-related birth defects (ARBD).

Peggy, Margaret, and Jan are members of our MousePad community and regularly participate in our discussions there, including on our Theme Park Access Forum. Thank you, Peggy (Mad4Mky on MousePad), Margaret (Mammasilva) and Jan(tjrj) for your contributions to MousePad and this article."

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