Family Vacations for Children with Cerebral Palsy

By John Lehman

Planning a vacation is an exciting but sometimes difficult task for any family, particularly families who have children with cerebral palsy. Special considerations must be taken into account well before the plane tickets are purchased. Fortunately, the task is not impossible. With a little bit of research, homework and proper planning, you can rest easy knowing your cerebral palsy child will have a fun and relaxing experience during your family’s vacation.
 

How to Prepare

There are many things you should keep in mind when deciding on a destination for your family vacation. Perhaps the most important step you can take when planning your vacation is to call your destination in advance and make sure they can accommodate your child. This includes potential hotels, restaurants or any attractions you are considering.

For example, will your hotel have adequate wheelchair accessibility? What about allergy risks? Are there hospitals nearby in the event of an emergency? All of these questions should be answered by calling your hotels or destinations ahead of time, well before you book your rooms. If the accommodations aren’t satisfactory, you’ll want to consider a different location.

Being in a new place may be disorienting for your child. You’ll want to be prepared in the event that your child panics or becomes upset. Some families combat this by trying to stay true to routines that their child is used to. If your child takes a nap in the afternoons, make sure you set aside time to allow him or her to do so. Of course, if your child is taking special medications, you’ll want to bring these along and have them take the medications at the appropriate time. Make sure you bring extra pills or dosages, just in case.
 

Where to Go

In today’s world, vacation destinations have proven to be much more accommodating towards special needs families than in decades past.

Some destinations are specifically designed with special needs families in mind. One such location is Morgan’s Wonderland, located in San Antonio, Texas. This amusement park’s mission is to provide an environment where all children can have fun together, regardless of their disability (or lack thereof). Activities include fishing, carousels, playing musical instruments, watching shows performed hourly and taking part in more traditional park activities, such as swing sets, sandboxes and slides. All of these activities are fully accessible for both children and adults with a variety of conditions.

Resort vacations aren’t out of the question, either. Some families with special needs have enjoyed visiting the National Ability Center in Park City, Utah. The center has many different active and outdoor activities for you and your family to enjoy year round, such as horseback riding, hiking, skiing, swimming and more. The center prides itself at offering these activities to children of all ages and ability levels, with the hopes of improving self-esteem, confidence and physical strength in the process.

Even famous resorts, such as Disney World, are renowned by special needs families for their excellent accommodations. Lodging at one of Disney’s many resorts are fully equipped for children or families with special needs, including text-to-speech devices, detachable showerheads and safety bars. Many of their biggest attractions have accommodations for special needs families as well.
 

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Learning to Embrace Life’s Little Moments

By Julie Ufema
View similar stories.
The holidays brought me an unimaginable gift this year. One that I never could have anticipated.
My Mom drove in from Maine and was able to join me as we volunteered to be ‘room mothers’ for my son Dane’s Christmas party. She was thrilled. I, admittedly, was apprehensive to say the least.
Earlier this year I was able to spend a day in the life of a kindergartner when my son’s home health aide called off sick, and although an invaluable experience, by the end of the day I was exhausted and happy to head home. But this would only take a couple of hours, and was a party to boot! I love a good party. How tough could it be?

Let the Party Begin

We walked into the classroom and all heads turned in our direction. Everyone now knew that I was Dane’s mom, an avid, amateur photographer and always willing to do something slightly unorthodox to meet my son’s special needs – two things that five-year-olds find highly entertaining.
The ‘head’ room mom announced that we would be making a Christmas ornament, reading a story and then playing some games. That seemed easy enough.
My mom and I set about opening up Popsicle sticks, squirting glue and sticking googly eyes where they belonged. Dane’s snowman looked like it was melting, but he’s never been one to follow the rules and I have never been one to make him.
The story was delightfully uneventful. The children all sat ‘crisscross-applesauce’ and listened with bated breath to find out if ‘Grumpy Santa’ would snap out of his funk and finish delivering his toys to all the good little girls and boys.

Game Time

Next up – the games! Dane squealed with delight and clapped his hands. A moment of terror swept over me. What games? How hard could they be? Dane has cerebral palsy, limited use of his hands and is in a wheelchair. It just hadn’t dawned on me that these ‘games’ might fall slightly outside of his wheelhouse. I so often forget that Dane is any different than anyone else that reality sometimes sneaks up on me.
And boy was this one a doozy! We were to push a Styrofoam ‘snowball’ the length of the classroom (and back!), with a wooden spoon, in an all-out, head to head relay race. When it came time to split into teams, I tried inconspicuously to hang back with Dane. Not a chance. The excited students pleaded with us, “Come on Dane!” “Dane, come be on our team!” “No, he’s closer to our side.  He should be on our team.”
As it had time and time before, my heart sank. I thought quickly, grabbed a piece of paper, rolled it up into a cone and handed it to Dane. “Here,” I said confidently.“You can be the director!”
My mother and the aides looked relieved. That should work for sure! Dane had definitely inherited my bossy pants gene and this should totally satiate his need to participate.
No dice. Out came the lip.
Before the first tear could fall I hurriedly unbuckled him from his wheelchair, mustered up all the strength I could, grabbed my 4-foot, 50 lb. baby boy and carried him over to the end of the line.

Part of the Team

Our turn came. I grabbed the wooden spoon, swooped down towards the ‘snowball’ and gave it all we had. I managed to give the ball one pretty decent whack, and with a couple more awkward and labored dips to the floor, we were just able to stumble across the finish line, dead last, to a raucous round of applause.
As I looked around the room I saw laughter, empathy and maybe just a little disbelief. I looked down at Dane and he grinned ear to ear. Panting, I trudged back over to my mom who quickly pushed Dane’s chair into position. She was smiling too.
She leaned into me, “We could see your bum.” She giggled.
“Won’t be the last time!” I laughed.
And it won’t be. I decided that from that day forward, I would attend all of Dane’s parties, not to protect him from disappointment, but to celebrate the moments that pass too quickly, often unseen by the adult eye. And if I have to show a little bum in the process, so be it. I’d rather teach my kids that to participate and risk looking foolish is always better than not participating at all.

About the Author

Julie Ufema lives in Central PA with her husband, Jason, in-laws and two sons. After deciding to start a family, Julie and Jason found themselves plagued with fertility problems. They had just about given up when their first son, Jett, was conceived. Julie and Jason were quickly blessed with a second son, Dane. Within days of Dane’s birth they received the shocking news that Dane had cerebral palsy and Jett was diagnosed with autism. Julie has written a narrative memoir chronicling the ups and downs of raising two children with special needs and continues to write and make films as time allows. Find her at www.julieufema.com and www.facebook.com/JulieUfemaWriter.

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Finding Justice for Bailey

By Terresa Gaither

Mothers’ Day will always be a mixture of joy and sorrow for me. My son, Bailey, was born on this day, May 9, 1999, and I’ve been blessed by his existence every day for 13 years.
It was also the holiday that my doctors and nurses delayed too long in delivering Bailey, resulting in brain damage.
For a long time I blamed myself and God. I kept asking, “Why me?” Then, a very special person in my life told me that God gives special babies to special people. I feel honored to be the mother of a child with disabilities.
I ended up filing a lawsuit over Bailey’s birth. According to my suit, my doctor and nurses were negligent in continuing to give me larger and larger doses of Pitocin (a drug to induce labor), even though Bailey was showing signs of fetal distress. As a result, Bailey suffered “severe and permanent neurological damage,” by the time he was born, my lawsuit notes.
The doctor used a vacuum extractor to deliver Bailey, who weighed 8 pounds 15 ounces and was 21 inches long. I suffered major blood loss and third degree vaginal tears, which required surgical repairs, my suit documents.
According to my attorneys, the doctor should have come to the hospital sooner and delivered Bailey by C-section.

Normal Pregnancy Turns into Nightmare

Bailey was immediately transferred to the NICU at another hospital nearly 60 miles away. I remember before he left, getting to see him for 5 minutes, long enough to tell him I loved him. I wasn’t even able to touch him. You can’t imagine how hard it is to lay in a hospital bed while your son is in another hospital over an hour away fighting for his life.

Specialist Raises Questions About the Birth

Since that day, my husband, David, and I have had to fight for Bailey, who has mixed spastic dynostic cerebral palsy. He cannot speak, walk, sit up or feed himself.
The diagnosis took a year and a half and came from a specialist at a larger hospital near our small town in Alabama. He looked through Bailey’s medical records and, after telling us Bailey would always need specialized care, asked us if we had thought about getting an attorney.
We discussed his question all the way home and we made a decision together to start pulling Bailey’s medical records. It took me three months just to get the records from the hospital and the medical practice.

Persistence Leads to Janet, Jenner & Suggs

The first law firm we contacted kept our files for two years before saying they weren’t equipped to handle the case and that there wasn’t any negligence. The second law firm concluded the case was too big for them to handle, but advised us to keep pursuing legal action.  
At this time, we felt like giving up. It was my mom who wouldn’t let us, encouraging us to push forward.
While researching a special education class for Bailey on the Web, an advertisement for Janet Jenner and Suggs’ law firm caught my eye. I filled out the short contact form and within two weeks, a nurse called and asked me detailed questions. The firm took the case.
Because of a confidentiality agreement, I can’t disclose what happened with the case. But, I can tell you it was a long, drawn out process. But JJ&S attorneys kept us in the loop and assured us every step of the way.
Ken Suggs wasn’t just our attorney, he became our friend. We could tell he really cared about Bailey and we feel honored to have this remarkable attorney in our son’s corner. He’s the kind of attorney who is passionate about speaking for the kids who can’t speak for themselves.
About our case, Ken said, “It was obvious from looking at the medical records that standards of care weren’t followed. Typical of these cases, it wasn’t a single mistake, but a series of missteps and miscommunications that led to the outcome. The firm connected the dots, using the medical and legal expertise it is known for. Bailey and his family have a special place in my life, and always will.”

Bailey is the Joy of Our Lives

Bailey loves to go to school, play outside and spend summers on the lake. But what he enjoys the most is spending time with his brother, Cody, and his grandpa, Wes. He’s just a regular boy trapped in a body that doesn’t allow him to do the things he wants.
No matter what kind of a day we’ve had, Bailey can always make it better just by smiling. He is the joy of our lives.

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For more information on Cerebral Palsy please visit our website:
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10 Ways to Optimize Your iPad or Tablet for Kids With Special Needs

10 Ways to Optimize Your iPad for Kids With Special Needs

August 2nd, 2012

By Zoe Fox

When we think about ways the iPad has changed the world, our minds usually shoot to publishing, entertainment, or mobile communication.

For the community of people living with disabilities, the iPad may have broken even more ground. The iOS device is not only cool, but provides education, therapy and, of course, entertainment.

Last summer, Mashable explored ways iPads are making these changes. Now we’re following up with Sami Rahman, the father of 4-year-old Noah and co-founder of BridgingApps, the Internet’s largest database of special needs app and reviews.

Noah began using his iPad when he was two and was assessed to be 12 months behind with language and cognition. Within four months, he was on par for his age. Now, two years since he began using the iPad, he is 15 months ahead developmentally, can read English and Arabic, and is learning Mandarin.

SEE ALSO: 4 Ways iPads Are Changing the Lives of People With Disabilities

Rahman recently released his book Getting Started: iPads for Special Needs. Rahman shared some of his insights for preparing an iPad for people with disabilities. Most of the tricks are tailored for parents or educators working with children.

1. Pick the Right Specs

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One of the biggest differences between the iPad 2 and the new iPad is retina display, which can create an incredible visual experience. Most special needs iPad users will not appreciate it at all, Rahman says, unlike artists or photographers. The reason to choose the new iPad would be if you want or need 4G connectivity.

The iPad 2, however, offers a major advantage over the original iPad — cameras. A major problem for many people living with learning disabilities is learning to associate an abstract concept with the physical object. In other words, recognizing that an illustration of a tree is related to the tree outside of the window. Taking photos on the iPad can be helpful for learning to associate food as an icon with food as an item, for instance.

This can be useful in the classroom environment, where a teacher can create content on the go without going back and forth to the computer.

When it comes to choosing the right size, Rahman says most social needs apps are not too large. If your iPad is just going to have one primary user, you won’t need any larger than 32GB. However, if the device is going to be shared in a classroom, 64GB could be worthwhile.

2. Volume Control

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Rahman says his wife’s favorite tip is to cover the speaker with masking tape. His son Noah, who has cerebral palsy, loves to jack up the volume on his iPad to be “blood curdling loud.”

“Because the iPad is a platform I can’t install software on to regulate the overall volume, we literally put cellophane tape over the speaker,” Rahman says.

Another option is to get a big case, which can muffle some of the sound, if you don’t want to restrict control over the tablet.

3. Explore Accessibility Features

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The iPad comes with a lot of accessibility features already included, which you should explore.

Voice over is one great feature for the visually impaired, which reads what you swipe out loud when it’s switched on. You can also try “white on black” view, zoom (for the visually impaired) and assisted touch (press a button instead of shaking your iPad).

Rahman recommends setting the triple click on the home button to turn on the accessibility feature you use most regularly.

4. Try an External Keyboard

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While some special needs users are great with the touchscreen keyboard, there can be two advantages to attaching an external keyboard to the iPad. First, it’s easier for people with fine motor issues to get an accurate touch.

Second, if you’re trying to work with multiple languages with different alphabets, you can attach character stickers on to keys rather than flipping between the iPad’s language options.

5. Make Time for FaceTime

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For people on the autism spectrum, learning to make eye contact can be incredibly challenging — it’s also one of the first warning signs that a child may not be inputting social interactions correctly.

Using FaceTime to chat with friends and relatives outside of your home can be a great way to build those skills. The facial close-up forces kids to look into the eyes of the person with whom they’re chatting.

“For any child that has a hard time with social interactions, FaceTiming with relatives can be fun and incredibly therapeutic,” Rahman says.

6. DIY Keyguard

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Keyguards are a very inexpensive way to give a voice to people who are uncommunicative and can be purchased cheaply for $20 or made by hand from foam board and an X-Acto knife.

Rahman recalls visiting with a non-verbal student in one school who used a two-button keyguard to communicate yes and no. After answering a sequence of yes or no questions, expressing his preferences for different needs and likes, the boy told a joke. Humor is, of course, a huge indicator of intelligence, Rahman notes.

“Do you have fun in school?” Rahman asked, expecting a yes, following a series of correctly answered questions.

The boy smiled, placed his hand near the yes, and then slid his finger over to the no button.

The boy again hit down the no.

“Really?” Rahman asked a final time.

The boy moved his hand over and pressed yes, indicating he in fact enjoyed school.

7. Set Boundaries

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It should come as no surprise that iPads can be lots of fun for the special needs population, so parents need to set boundaries from the start.

“The iPad is totally useless without a plan,” Rahman says. “Everyone owns a hammer but few people can use it to build a building.”

Comparing an iPad to a pacifier, Rahman says parents must draw lines to prevent the iPad from becoming just an entertainer, and to ensure it is used for education and therapy.

8. Make Photo Albums

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Learning to associate pictures of objects with concepts can take years for some people with special needs, but the iPad can be an important learning tool if you take pictures and organize photo albums. The tablet can become a great communicator when you view 16 icons at once, and allow the user to choose what they want.

You can give people who are non-verbal and partially non-verbal the ability to express preference by showing them, for instance, pictures of foods that they can eat for a given meal. You can also show options of activities, clothes or people.

9. Keep Cleaning

While iPads can be great babysitters, if you want to use the tablet for therapy or education you’ll need to frequently mix up the types of apps your child is using.

“If you’re not removing apps on a regular basis, you’re focusing on entertainment, not education and therapy,” Rahman says.

Parents almost always tell Rahman that they’re not removing apps from their children’s iPads, meaning they’re not letting their children flex their muscles or learn new skills.

10. Lock Screen

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The constant rotation of the screen can be incredibly frustrating for some individuals with special needs. You can choose to lock the screen to prevent the display from reorienting as the device moves. This will give the user a greater feeling of control over their experience.

Rahman notes that for his own son, after two years with his iPad, it was a big moment when he learned to navigate with an unlocked screen.

“I don’t want him to just settle, I want a kid that forces the world he wants,” Rahman says.

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Preventing the Summer Boredom Blues

By Lee Vander Loop
CP Family Network Editor

It’s the first full week of summer and children have been out of school just a few weeks. Already, many parents are beginning to hear the growing mantra: “I’m bored!” As a parent of four children, I have a very clear memory of the frustration and challenges of keeping my children busy and entertained through the summer months. The last thing any parent wants is to watch their child spend their summer vacation in front of the television or enthralled in countless hours of playing video games.

Most children have a preconceived notion that every day of summer should be exciting and adventurous. Children with special needs are no exception. As parents, we feel an obligation to provide our children with memorable summer breaks, without breaking the bank! Determining how to manage that day-to-day challenge can be exhausting for parents of a special needs child, especially when you factor in possible accessibility issues that may arise for children in wheelchairs or with mobility challenges.

During the 27 years I spent raising my children, I found that you need only look in your own backyard to find quality, fun-filled hours for many children. When I asked my children, who are now in their 20s, what their most memorable summer memories were, I was surprised to learn that it wasn’t the expensive, extravagant trips to Disney World or other costly vacation adventures. Their fondest, lasting memories are of time spent with family and friends. Memories of pool parties, sleepovers, cook-outs and quality activities in their own backyard were some of their favorites.

The key to a boredom-free summer is to “Keep it simple.” Summer vacations are about spending quality time with our children and family and creating lasting memories, both of which can be achieved on a budget and close to home!

How can you get started planning an entertaining summer for your family? First, get out the calendar. As you come up with activity ideas, choose a day and note the activity or outing on the calendar. Your children do not need to be involved in your planning and brainstorming sessions! You can present the “agenda” to them after you’ve ironed out the details. It may also be beneficial and productive to communicate with other parents. If your child has close friends from school that they don’t get the opportunity to spend time with during the summer, call their parents and try to arrange play dates. Even if it’s just one day a week, your children will appreciate the opportunity to spend time together. You can discuss activity ideas with the other parents and even rotate planning responsibilities, with each family taking turns providing the day trip or whatever activity is chosen.

There is no shortage of fun, local summer activities to excite the whole family. Here are a few ideas to get you started:

Day Trips – Day trips to local, inexpensive attractions are wonderful ways to surprise the children with an unexpected adventure and hours of enjoyment! Putt-putt golf courses, trips to a local botanical garden, petting zoo, water park or other small-town attraction provide a day of entertainment and something out of the ordinary.

Get Outdoors – Studies show that today’s kids spend far less time exploring the outdoors than their parents’ generation did. Contact your local Department of Natural Resources for information on accessible outdoor recreation opportunities in your state including camping, fishing and other outdoor activities.

State Parks – Your state park is a wonderful place to enjoy the great outdoors. Today, many local and state level parks provide handicap accessible and adaptive activities and programs. Check with the park ahead of time to find out what is offered in your area.

Local Zoo – What child doesn’t enjoy a day at the zoo?! Pack a picnic lunch for an inexpensive day out. If possible, visit on a weekday to avoid crowds. Some zoos offer discounts mid-week, so be sure to check their website when planning your visit. Check the Association of Zoos & Aquariums to find an accredited zoo or aquarium in your community.

YMCA – The YMCA exists in many communities and offers a variety of adaptive sports programs and activities for children with special needs. Check their website for programs in your area.

Fun at Home – Plan a day’s worth of backyard activities and invite your child’s friends over. Fill water balloons for water balloon tosses or other water play, plan backyard camp-outs, crafts and games and activities that everyone can enjoy. Search the internet for ideas. Sites such asDisney Family Fun and Crafting with Freckles provide wonderful and creative ideas for hours of fun-filled activities in your own backyard!

An enjoyable and memorable summer vacation doesn’t have to put you in debt. It doesn’t require cross-country trips or fighting the crowds at the big name amusement parks. It just takes some planning and exploration of your own community!

More Resources

Disability Friendly Beaches

Best Vacation Spots for Families with Special-needs Children

Accessible Vacations Listed by State

Gimp on the Go Disabilities Travel Publication

Accessible Playgrounds