"Oh, no! My Child Has to Have Surgery!"

I've been thinking a lot about surgery lately. So much that I actually thought I'd written about this already....

Years ago I was waiting while Amanda had leg surgery. We were sitting in the Day Surgery Lounge of Children's Healthcare. Near us was another family, the mother sobbing hysterically in her husband's arms. I wondered what their child could possibly be going through to have her is such a state. After about an hour she collected herself and sat quietly waiting.

When the nurse brought them back to see their child I overheard her husband say, "There, I told you a tonsillectomy was nothing to be scared of." It was all I could do not to laugh! All that drama for tonsils? Seriously?

Then I remembered Amanda's first surgery. The first surgery is terrifying for parents, whether it is open heart surgery or a tonsillectomy.

In February of 2006 when Amanda was 6 years old she had strabismus surgery.  I was scared and frustrated. We'd had her wear a patch for ages in order to avoid surgery and now we still had to go through with it.

However, it was obvious to us that she had little or no depth perception. When doing a board puzzle she would put the correct piece near the space and the randomly slide it around until it clicked into place. We had her using sippy cups because she would try to put her cup on the table and miss it by an inch, the cup crashing to the floor. We could see it when she was walking with us. If she got to a change in surface, even a different color tile, she would pause and test it with one foot to see if she could contiue or needed to step up or down. We hated the idea of surgery, but we could see how it would improve her life if it worked.

See how her left eye is drifting?

In retrospect it was a relatively minor procedure, but at the time it was very scary. I remember waking up at 5AM to get her ready. I was worried that she would be hungry, but she was so sleepy that it wasn't an issue. I bundled her up in her favorite fuzzy blanket, put her in the car in her pajamas and drove the hour to the surgical suite.

Now I know that surgery that doesn't require hospital services is generally considered safe surgery. If the doctors can perform the operation in an outpatient surgical suite they have all of the necessary safety equipment and an anesthesiologist present, but don't expect any complications or an overnight stay.  But I didn't know that then.

We checked in to the office at 6 AM. After waiting a few minutes we were brought back to a pre-op area. We waited in our own space with 3 walls and a curtain for privacy. There was a gurney for Amanda to lie on and a chairs for us. They let Amanda stay in her own pajamas. They gave her a little "loopy juice" (versed) to make her sleepy and help her forget the procedure, then they covered her with a warm blanket and wheeled her through the curtain.

I stayed with her as long as they would let me, holding her hand all the way to the doors of the surgical suite. When the doors closed behind her I realized that tears were streaming down my face. Amanda had only been away from me while she was at school. I felt so helpless with her out of my sight, out of my control.

My husband was surprised that I was crying. He knew logically that it was a short, safe procedure. All I knew was that my baby was being hurt. In that moment it didn't matter that it was the right thing to do.

It really was a quick surgery. It think the actual procedure lasted about 30 minutes. After that she was in recovery for another half hour or so. We left the surgeon's office by 10AM.

At first Amanda's eyes were blood red. It was kind of creepy, but the blood cleared in a few days. Best of all her eyes really weren't drifting anymore. We could see her really looking at things - both eyes focused together. It was surprisingly cool. It made me wonder what the world had looked like to her before the surgery.

Amanda still wears glasses. She has progressive myopia that had nothing to do with the amblyopia and strabismus. Happily, her depth perception is much better thanks to that surgery.

No parent wants to put their child though a surgery. However we've learned that if there is need for surgery, there is no point in waiting. I don't think doctors lightly suggest surgery. I'm fairly confident based on our experiences that they will always try other, non-invasive methods first. Before eye surgery Amanda's doctors tried glasses and patching. Before back surgery her doctors had her go to physical therapy and wear a brace. Only in an emergency will most doctors suggest immediate surgery. When Amanda broke her hip and the doctors said it needed to be surgically pinned as soon as possible we didn't hesitate. She had surgery within hours of arriving at the Emergency Room.

If you are facing non-emergency surgery for your child,  you have the opporunity to alleviate some of your fears beforehand. Sit down with your child’s doctors and ask the questions you need answered to make an informed decision. Ask about the risks of surgery, the surgery itself, how the doctor thinks the surgery will help and what to expect to after the surgery. Ask for an email address to contact them if you have additional questions. I often find myself with questions after I've left the office. If you are still unsure, get a second opinion from another medical professional. It can only help in your decision-making process.

However, if your child needs surgery don't be surprised if the doctors tell you the worst case scenario. For liability reasons they have to warn you about the risk of blood transfusions, comas, even death. THAT DOESN'T MEAN THAT WILL HAPPEN! It just means that there is a risk to any procedure. It may mean that one or more of those things has happened to a patient somewhere, at some time during this specific procedure. In this age of litigation doctors have to warn you of any and all possible risks or they may be sued for malpractice.

And, speaking from experience, if something does go wrong you are in the best place to handle an emergency. Amanda has had a blood transfusion (so have I) without any complications even though it was unplanned. Following hip surgery her lung collapsed. She was treated immediately and although it resulted in an extended hospital stay she has had no long term complications.

I've found that other parents are often the best resources. They will tell you truthfully about their experiences, good and bad.We are lucky to have a resource in the U.S. called Parent to Parent. They have a nationwide network. They will try to connect you with another parent whose child has undergone the same procedure.  We were very lucky to have a family in Atlanta to talk to before Amanda had her spinal fusion. In fact, the mom was so kind that she showed up at the hospital with magazines and snacks.  She even moved a more comfortable chair into the room for me. Talk about supportive!

Now we have been through nine surgeries with several more on the horizon. I say "we" because although Amanda has the surgery it impacts our entire family. My advice is simple. Do it if it is medically necessary to improve your child's health or quality of life. Don't do it casually. Research the proposed procedure online. Talk to the surgeon and other parents. Find out what the recovery will be like and what the potential downsides may be. If you are concerned about blood transfusions donate blood in advance of your child's surgery to be used in an emergency. Do your best to prepare yourself and your child,  then be confident in your decision knowing that you have taken a careful approach. But expect to be scared - after all, you're a parent. Its part of your job to worry about your child.

Am I a Better Person Now? No, Not Really...

Amanda is disabled.  And, yes, I used the politically incorrect term deliberately. Amanda is essentially a 120 pound baby. She walks only with assistance. She doesn't talk. She needs help feeding herself, dressing herself, bathing herself. She still wears diapers. While she has special needs, she needs so much more than that simple term encompasses.

I am a different parent than I would have been if I hadn't had a child with a disability.

I am not a different person, however. I am no more patient than I was before her birth. I have simply learned to act patiently because losing my temper gets me nowhere.

I am just as vain as I ever was. However, I have put myself second to her needs for 14 years. I rarely have the time to put on makeup or the energy to exercise. That doesn't mean that I have achieved some deep inner peace that allows me to be okay with the way I look.

I am still selfish. I want more than anything to do the things I did before she was born - go out with friends, ride horses, work. I just don't have the luxury of acting selfishly.

Parenting requires sacrifice. Anyone with a child knows that. It doesn't matter if your child is a healthy, typical child or one with special needs.

However, parenting a child with a disability changes your life in ways you might never expect. I am always surprised when people compliment me, saying things like "You have such strength." No, I don't. I am weak and vain and selfish. I'm apparently just a really good actor.

Sometimes I think parenting a child with special needs must be a little like alcoholism. The hardest part is accepting that there is a problem. You have to confront the reality that your child and your life will not be like most people's.

 

You have to learn that it's okay to ask for help - financial, educational, emotional... And, its okay to accept help you didn't ask for. For me, one of the hardest things was learning to let someone else give me a break sometimes.

 

I remember struggling with the concept of accepting aid when Amanda was little and I first considered applying for Medicaid. A combination of pride and the sense of permanence -the idea that if I put it on paper it would be real - prevented me from filing the forms initially. I finally decided that it was no different from accepting a HOPE scholarship - especially as I knew she was unlikely to ever attend college.

I remember sitting in the Welfare Office with my then 2 year old, waiting to be interviewed. It was winter and the room was filled with people waiting for heating assistance and food stamps. I almost walked away. Not because I didn't want to be near them, but because I hated the idea that if Amanda got Medicaid someone else might be cold or go hungry.

I'll never forget an elderly lady, dressed in clothes that were clearly cast offs asking me if she could pray for my baby. There she was, cold, tired, possibly hungry - and she wanted to pray for us. I was stunned by her generosity. That was the moment that I knew it was okay to accept help.

I am not a better person because of Amanda's disability, but I do think I'm a better parent than I would have been.

Are We Alone?

Amanda has a genetic deletion (monosomy) on chromosome 15 (q21.2-q22.3). When she was first diagnosed in 1999 there was very little information on her chromosomal deletion. We were given one article starting with "There have been only four reports of deletions in the more distal 15q2 region,2-4 all involving severely handicapped infants." Looking at the chart two had passed away by their 3rd birthday. Discouraging news for new parents.

Amanda not only survived her third birthday, she thrived. Although her development was delayed she continued to grow and remain healthy. She started walking at 5 1/2. When tested at age 10 her development was on par with a typical 2-year old, causing her to be classified as "severely delayed." Still she was progressing and, most importantly, she was healthy and happy.

However, we have been alone this entire time. We have never met any one with a similar chromosomal deletion. There are no support groups when you are one of six known cases of a disorder. There are no marathons for financial support. No special T-shirts or car magnets. No one to talk to.

Amanda's life has been a series of unknowns. Will she walk? Will she talk? Will she need surgery for this or that? Without a network of other families we've just had to wait and see, always hoping for the best.

I worry because the ages of the survivors in the paper we were given were 15 months, 14 years and 18 years old. The article came out in 1990. The oldest would now be forty. I hope they are all well, with happy and fulfilling lives. But there is no way of knowing.

Recently I've noticed what seems to be a slight deterioration in Amanda's overall health. It is nothing serious, but enough to concern me. For instance, last fall she had several clonic/tonic seizures (grand mal). I wish I had someone who had been through this before me. Someone who could say,"it's okay - its just part of the syndrome sometimes." But I don't.

oxygen converter

Amanda has always had some breathing issues. Having been through multiple surgeries we know that she takes a while to come out of it after sedation or general anesthesia. We expect it and don't worry about her coming back to the room on oxygen - her pulse oxygen level in the low 80s. However, last year after hip surgery she unexpectedly crashed.

Doctors and nurses rushed into the room with a big machine. It turns out she had actelectasis - her right lung had collapsed. They moved her to pulmonary ICU. She got breathing treatments. Every few hours she had to go through percussive therapy. She was released after five days in intensive care. She came home with canisters of oxygen and a huge, purring oxygen converter.

Later that year, while sedated for a bone density scan, she became cyanotic three times in eleven minutes. I was in the room since no one had expected complications. Watching the doctor and nurses rush to clear her airway and provide oxygen three times was not fun.

Look at the bluish tint around her eyes -
even on oxygen she was cyanotic.
 

Finally, last week after a relatively short time under anesthesia (less than 2 hours) for a CT scan and MRI she returned looking cyanotic. Her nail beds and lips were bluish. The area around her eyes looked bluish gray. Her breathing was obstructed (like intermittent snoring) even though she was on oxygen.  There is something extremely frightening about listening to your child struggle to breathe. Breathing is so simple and fundamental. It's autonomic; it's not supposed to be a struggle.

I wish I knew there were others who had had these symptoms as well. I wish I knew if they are typical for her condition or if they may indicate something worse on the horizon.

I've always considered Amanda one of the lucky ones because she survived infancy. I assumed that if she made it past that critical period she would be more or less fine. Now, I'm starting to wonder what to expect. I wonder how those other survivors are doing. What are their lives like? Do they have the same symptoms? Have they had the same surgeries?

I've been on a quest to find other survivors for the past 3 months. I was thrilled to find two with close chromosomal deletions. One is a boy with a nearly identical deletion. Happily, he is also 13 - and luckily has far milder symptoms. He is walking, mainstreamed in school and very healthy.

Encouraged, I realized that where there was one there might be another. I researched every rare chromosome group I could find on the Internet. I believe that I have located four more individuals with a similar deletion.  That brings the number of documented instances of this particular chromosomal deletion to eleven!

I have no idea how old these children are or what they have been through. I've been able to get some contact information so I've reached out to them. Hopefully they will respond.

I hope I hear from the other families. I hope we can share stories and provide support for one another. I am so grateful that we are not alone anymore. Maybe we can get T-shirts or have a marathon some day.


Looking for a match to Amanda's rare chromosome deletion I've found the following resources:

http://www.rarechromo.org/html/home.asp

http://www.chromodisorder.org/CDO/

http://www.rarediseases.org/

http://www.rareshare.org/

 

Preparing Your Home for a Home Health Care Provider

Preparing Your Home for a  Home Health Care Provider

When you decide to employ a home health aide there are a number of changes that you need to consider - both in your home and in your lifestyle. What will it be like having another person in your home for hours or even days at a time? If you are a private person it may feel like an invasion. On the other hand, for some folks its welcome companionship - someone they can rely on to visit  daily.

You need to make your home as safe as possible for both your family member and their caregiver. Remove objects that may be easily broken. Prevent tripping by removing small rugs, runners, electrical and phone cords from pathways. Place non-skid adhesive strips to non-carpeted stairs. Make sure that your home is well lit - especially stairs and hallways.

You may need to purchase items that you don't already have. Things you should have include, but aren't limited to:

• smoke detectors
• carbon monoxide detector
• nonslip bath rugs
• nonslip stickers or mat in the bathtub or shower
• grab bars by the toilet and in the shower/tub
• flame resistant potholders
• fire extinguisher

Having help when you have a family member with a disability can be a blessing. Another set of hands to help with care giving and household tasks can seem like a dream come true at first.

However, anyone who has employed a home care worker knows that the honeymoon period wears off.  My initial reaction was to treat the person like a member of the family while they were in our home.  I did this in part because I saw my parents struggle with the aides who cared from my mother.

My parents were very private people. They were brought up in a different era. The combination of these factors meant that they didn't want their live in aide dining with them. There was one fundamental problem with this idea- they only had one table. There was no where to sit and eat in the kitchen. Those poor women had to stand in the kitchen to eat their meals.

My parents wanted their aide to be "on call" but essentially out of sight. That meant that they were relegated to spending large parts of the day in their room or on the back deck, waiting for my parents to page them. Being a home health aide is a difficult, physically demanding job. The pay is poor and there are often no benefits. Adding social isolation must have made the job so much harder.

My mother was a little confused toward the end and some of her aides took advantage of her. While I was visiting one afternoon I saw her "tip" the aide five dollars three times for filing her nails that day. After my mom passed way small pieces of jewelry and other items were missing. I think that if my parents had been even a little more tolerant these small abuses might never have occurred.

On the other hand, I've learned that without some boundaries people may also take advantage of your good-nature. My daughter's aide is generally included in everything we do. She eats with us, hangs out in the living room and watches TV with us, etc .

In the past I've been so casual that people forgot they worked for us. Some have wanted to watch graphic crimes dramas with my daughter in the room. I didn't realize that one woman was using my laptop for online shopping until I went to several websites and the "Your Store" zip was set to her town. We've had aides show up with their children and their dogs.  One showed up before a job interview so she could use our shower!

In addition to making sure your aide knows what you want done, be clear about what NOT to do as well. While I don't want to create a feeling of distrust I do want to maintain a semblance of privacy in my home.  Some of these suggestions may make you feel ridiculous, but consider the alternatives. Be specific about any areas that are for family-only. I would rather hang a sign on my door than find someone up to their elbows in my underwear drawer. Let the person know if they are welcome to watch your TV (and what shows you would prefer they not watch), use your computer, etc. Here are a few tips based on my experience:

• If you don't want your aide to pry into your bedroom, master bathroom or office, you need to clearly post a "PRIVATE" sign on the door.
• Password protect your computers and cell phones. Lock file cabinets. Consider blocking unwanted content on your TV.
• Label dresser drawers, kitchen cabinets, etc. to prevent "I was just looking for..." If everyone knows where to find necessary items there is no reason to look elsewhere. Most people will respect your privacy, but there is always one person that wants to go through your pantry or medicine cabinet.
• If you have cherished heirlooms or valuables, move them out of sight or store them safely somewhere else. A spilled drink can accidentally ruin an antique table that looks "second hand"to an aide.

Be sure to interview any person or agency carefully before you hire them!



For more information on home safety for the elderly or individuals with special needs please go to http://www.ces.ncsu.edu/depts/fcs/pdfs/FCS-461.pdf

How to Write Instructions for your Home Health Aide

Home Health Aide Daily Care Plan & Instructions

When we first had a home health aide for my daughter the job seemed obvious to me. Not so to the various care workers who were assigned to her. Truthfully a home health care aide or companion typically has very little to do. A live-in aide can retire to his/her room and read or watch TV until you need their help. A part-time aide is in an awkward position because there isn't much to fill the time. I don't mind if the aides read, text or use their laptops - provided they meet my daughter's basic needs in a timely manner.

Do your homework when you hire an aide. It turns out that most people will only do exactly what is asked of them - no more, no less. For instance, with an elderly parent if you ask the caregiver to make a pot of coffee it is very possible that they will only make coffee on the day that you make that request. If your parent wants a pot of coffee made every morning with breakfast that needs to be specified. You need to prepare your home when you have someone working in it so they can find the things they need.

Review the instructions on equipment and procedures. Make sure that the aide has the written instructions available for any unique equipment like a lift. WATCH them perform complex tasks at least once to make sure that they are being thorough and safe. Don't trust that "showering" means the same thing to everyone. Some people may spray your family member down quickly, others may sit them in the shower and walk away for 10 minutes. Be specific about your expectations.

Review and provide instructions for all medications that the patient requires. Don't forget non-routine medications. For instance, if the person has an Epi Pen make sure the aide knows where it is and how to use it.

If you expect the person to prepare meals or snacks, make sure that they know where the ingredients are as well as what food preferences or allergies the person may have. When in doubt, provide a printed recipe including the location of all ingredients. Decide if the person will be eating with your family member and provide adequate quantities of food (obviously live-ins expect meals).

While it seemed ridiculous at first, I learned to provide a detailed list of each task that I wanted done every day.  Each task is described including the timing (after school, at dinner),  tools to be used (special cup, broom, etc.)  and the frequency (daily, weekly, etc.). I also include check boxes so the person can keep track of what has been completed each day.

The last section of my daily list includes safety instructions. Make sure that you have your address written down in the event of an emergency. You'd be amazed at how many people simply follow their GPS and have no idea where they are. If you are not going to be there at all times include your contact information on this page as well.

Here is an example of a daily care plan for a 4-hour after school shift for our daughter. Your plan may be more detailed depending on medical needs and the extent of home care tasks you expect.


Daily Home Care Plan for __________________      Date:  _____________

Tasks include, but are not limited to:

Personal Care

         Meet & get her off school bus using wheelchair

         Change clothing if wet or dirty immediately after school

         Toilet or/change Depends every 2 hours   

o   Completed  at     time _____________       time _____________   

o    Check  Depends immediately after school. Change after shower & before bed

o   Thrown wet/dirty Depend in kitchen trash can

         Provide afternoon snack (prepared in frig) Complete at time _____________   

         Assist with ambulation around house (maintain contact guard at all times)

         Assist with TV remote, computer, etc.

         Shower daily    Completed at time _____________   

         Brush hair daily after shower

         Wash hair on Wednesdays   Completed date _____________   

         Assist with feeding during meals & snacks

o   Cut food into bite sized pieces for finger feeding

o   Assist with use of spoon or fork (may need to feed her)

o   Place dirty dishes, cups and utensils in the sink

         Provide companionship & supervision at all times

     Maintain safe environment while parents are away or otherwise occupied.

Home Care

         Make bed daily    Completed at time _____________   

         Fold & put away laundry as needed (2-3 times a week)

         Dust & vacuum bedroom on Mondays (weekly)  Date _____________   

o   Use Swiffer dusters and Shark carpet sweeper

         Clean bathroom on Fridays (weekly)    Date _____________   

o   Use disinfecting wipes to wipe down toilet & bathtub

o   Lift no slip mat and place on shower chair to air dry

Safety    I can be reached at 555-555-1234

Never allow her to walk around the house alone – be with her at all times.

Watch for choking while eating and drinking.

In the event of a clonic/tonic seizure (grand mal):

1.    Ensure her safety - roll her to her side, if possible

2.    Call 911 The address here is 123 Main Street Anywhere,ST

3.    Administer medication per instructions on label (outer pocket of blue backpack)

For insights on the aide's perspective please go to http://newoldage.blogs.nytimes.com/2009/01/21/advice-from-a-home-health-aide/

Questions to Consider Asking a Home Health Care Agency

Questions to Ask a Home Health Care Agency

DISCLAIMER: I am NOT a lawyer or insurance professional. Please check the local laws and regulations in your state.

We've had a home health care aide for my child with special needs for roughly 10 months. We located an agency through a list of state -approved providers. However, some of the caregivers they sent were completely unsatisfactory. For instance, one casually mentioned during a family dinner that her own family had called child protective services on her several times.

Another time an frail woman who appeared to be about 70 showed up. I was afraid she'd fall and break a hip! I ended up making her tea and letting her watch TV until the end of her shift. In my opinion, she couldn't handle the physical challenge of working with a 125 pound, autistic and mobility impaired person.

I finally discovered that the agency (which was approved by my state Medicaid) hired through Craigslist. Applicants were required to pay for their own background checks, but were allowed to start assignments before providing the agency with the results.

The agency was hiring them as independent contractors. These individuals had no worker's compensation insurance. Several told me that they had no personal health insurance. What would have happened if they were hurt on the job in my house? Most likely we would have been sued.

When I contacted the home health care agency I asked about these issues (none of which they refuted.) I also asked if they had any general liability insurance in case my child was injured by one of the people they sent to our home. The answer was that the business was insured, but the coverage only extended to their physical place of business (the office.) If my child was hurt or abused by someone they sent over I would be free to sue the individual involved!

These practices put both my family and the caregiver at risk. I had to ask the state to help me locate a more suitable agency. Rest assured that I asked A LOT of questions before I agreed to a new agency!

So, as a precaution to others I've compiled the following list of questions.

If you have a home health care or home care worker in your home, consider asking the agency* the following questions:

Are the workers you send to my home employees or independent contractors? This is important because the agency isn’t paying payroll taxes on independent contractors – including worker’s compensation insurance.

If an independent contractor is hurt on the job in your home or driving on your business you can be sued for medical costs and lost wages. Do not rely on Homeowners Insurance coverage to protect you, unless the insurance carrier has confirmed coverage for this risk. Many insurance companies have specific riders that can be added – at a cost- to cover in-home caregivers

Does the agency have general liability insurance?
In the event that your child or family member is injured while being cared for by an employee of the agency does the agency have coverage to pay for related medical expenses? Ask to see the documentation.

Does the agency have theft insurance?
Have employees been bonded? In the unfortunate case of theft by a caregiver is there insurance coverage to help you recover financially?  Ask to see the documentation.

Has the applicant had a criminal background check, drug screen and employment (not personal) references contacted?
Just because caregiver is provided by an agency or registry doesn’t mean that adequate screening has occurred. A number of smaller agencies recruit though Craigslist. Applicants may or not have been interviewed in person. 

Is the worker First Aid/CPR certified?
Tell the agency what your specific needs are. Don't assume that the worker will know how to operate your equipment, assist with transfers, etc.

Ask things such as: Has the caregiver had any specialized training (familiarity with equipment/supplies, received training in a specific illness, etc.)?  Are they capable of meeting any lifting requirements?

Does the caregiver have adequate auto insurance coverage?
If not, and the caregiver gets in a car accident in the course of running errands on your behalf, then you may be held liable for the damages caused by the caregiver.

 *If you hire an in-home caregiver yourself ensure that you have similar coverage!

If you hire a home care worker privately, you are not required to provide workers compensation (unless they are being paid through a funded program such as CCSP/PSS in Georgia.)

Like any employer, you must abide by the applicable disclosure and authorization provisions if you elect to perform a background check. You should only have a background check conducted by a professional third party. Do not attempt to do it yourself. If you elect to have a background check done be sure to adhere to all legal requirements regarding privacy and disclosure.

If you are hiring the worker privately be sure to have clear job guidelines including specific lifting requirements and safety precautions.

If the worker is injured lifting your family member, slips in a wet bathroom, etc. are you prepared for the financial costs of covering their lost wages and medical costs? What if they sue you – do you have an umbrella policy on your homeowners insurance that will protect you?

What if you are robbed by them? Will your insurance cover the damages?

If they injure your family member are you equipped to handle the related medical costs?

Be sure the worker knows what is expected of them while on the job in your home and that you have made your home safe for both the caregiver and your family member.

DISCLAIMER: I am NOT a lawyer or insurance professional. Please check the local laws and regulations in your state.

Walt Disney World with A Wheelchair Part 4 Dining

Disney Dining When You're in a Wheelchair

Table Service Restaurants
Dining can sometimes be a challenge if you don't plan ahead. Many Disney restaurants are crowded and hard to maneuver with a wheelchair - particularly Character Meals where everyone is moving around more than normal. For instance our daughter once was asked to transfer into a regular chair at Akershus during the Princess breakfast. Her wheelchair was safely stored and returned to us at the end of the meal.

Also, due to the need for extra space you may not get the prime views that the restaurant is famed for. If you want a good seat or the view the restaurant is known for make sure to ask for it before you are seated! Otherwise you will most likely be stuck out of the way.

Don't count on there being room for a wheelchair in a table service restaurant if you try to walk in! When you can, make advance dining reservations and be sure to specify that you will have a Guest in a wheelchair dining with you. Hopefully if Cast Members know about your needs ahead of time that they won't try to seat your party in a booth or a hard to reach corner.

You can (and should) make reservations for Character Dining, Dinner Shows and Signature Dining. If you've used a travel agent to plan your trip they can also give you insights on restaurants and make your dining reservations for you. The service is free!

You can call 407-WDW-DINE yourself for reservations if you want. Cast members are always happy to help you with reservations. However, its just as easy to create your own reservations online.

After you chose your restaurant and time you will get a screen labeled "Guest Information". This will include the restaurant, time, number in your party, etc. You will need to fill in a phone number that you can be reached at while on vacation. Next - and most importantly!- click on the box to the left of where it says "I have special requests or a food allergy."

Once you have checked that box, another window will open allowing you to specify any common food allergies as well as the fact that you will be need wheelchair accessibility. Not only do we request wheelchair access, we have two food allergies to contend with so I always start here. If I have any other special requests I can follow up with a call to WDW-DINE. Don't be afraid to try booking your own dining reservations on line. It's easy!

We tend to eat light so we only have one or two table services meals per visit. We've eaten at Sanaa, Akershus, Nine Dragons, Cape May Cafe and Kona Cafe with no problems.
What about Quick & Counter Service restaurants?
There are lots of options when it comes to dining at Walt Disney World. How do you handle the places where you can't make a reservation? If you are on the standard dining plan chances you have one quick service meal, one snack and one table service meal per person per night. If you are paying for your meals out of pocket, you probably still don't want to make every meal a table service meal.

Not all Quick service restaurants are equal when it comes to wheelchair accessibility. Some counter-service locations have narrow lines delineated with rails that aren't wide enough for a wheelchair. You will need to send someone for food or contact a host or hostess for assistance. Our typical strategy is to send one person to place the orders, pay and carry the food as some of the places we're tried can't accomodate even a manual wheelchair.

Focaccio Sandwich at Starring Rolls - great if you can make it through the chair maze!

For instance, Starring Rolls Bakery in Hollywood Studios has great sandwiches, but the area is a little corner, which you have to navigate a series of tables and heavy metal chairs to get to. It's a lot of work but worth it for delectable bakery goods. An easier choice in the Backlot Express which is crowded, but roomy enough to navigate without much problem. The hardest part will be finding a free table!

In the Magic Kingdom Cosmic Ray's has a lot of seating, but railings separating the lines so again you will probably have to ask someone else to order. Casey's Corner has good food & a few outdoor tables, but the indoor seating is bleachers (super cute sports theme) so not accessible. We all love the Kiddee Cones at Plaza Ice Cream Parlour but it has such a narrow line that it won't accommodate a wheelchair. One of us waits in line and orders the cones while everyone else waits outside

An easier place to get ice cream at the Magic Kingdom is Storybook Treats. It is an outside location with a small covered waiting area. They have yummy soft serve cones, sundaes and shakes.

At EPCOT in Future World we tend to go for the Electric Umbrella as it is quick; however the lines are impossible with a wheelchair. You'll need to split up to place your order. our We've also eaten at Sunshine Seasons. It can be very crowded! Its cafeteria style so again, its a good idea to leave the person in a wheelchair gaurding your table while some one else picks up the food. A great option is to try the various snack carts around the World Showcase. You can order food and find a shady spot under a tree or by the lake to eat.

I can't say that we've eaten at every Quick/Counter Service restaurant or snack cart. I wish I could give you a detailed list of your best choice when it comes to accessible casual dining, but it's nearly impossible. So much depends on the size of your wheelchair or ECV, whether you are traveling alone or with companions, your own food preferences...

For a complete list of Quick Service Restaurants, go to the Walt Disney World website. All I can say is that if you want to eat somewhere and find that you can't access it with your wheelchair, flag down the nearest Cast Member and politely explain the problem. Most Cast Members will be happy to help in anyway they can - from getting the host or hostess for you or even carrying your meal if you can't. Just be nice and ask - you might be amazed by the magical response!

Walt Disney World - Magic Tricks (Not Rocket Science)

I am NOT a Disney expert by any means! In 6 weeks we'll embark on our third trip to Walt Disney World. We're fortunate that we live within a day's drive so the travel expense is minimal. A tank of gas, eight hours and a great deal of patience - and we're there!

Luckily, right now my girls like a lot of the same things - Mickey Mouse Clubhouse, Disney Princesses and simple rides. I think this may be the last easy trip before my youngest outgrows my older daughter's interests. Its an odd truth to be facing. So, I feel like making the most of this trip.

There are almost as many blogs and websites about traveling to WDW as there are travelers. My perspective is unique primarily in that I will be traveling with a teenager with special needs and a preschooler. Also, I'm very budget conscious. I wish I had the money to rent a 2 bedroom suite at the Grand Floridian (currently a "mere" $2,285/night), but I don't. And, truthfully, probably wouldn't if I did.

I do understand the appeal of the Disney Experience. They offer a great deal - especially if you have to fly. You can take a Disney shuttle from the airport to your lodging and use Disney transportation for the rest of your stay - saving the cost of a rental car and daily theme park parking (totalling about $250). A full-size car rental will cost approximately $156 for six days and parking will cost roughly $90. Remember - you only have to pay to park ONCE per day -save your receipt if you leave the park and return to either the same park or a different park on the sae day.

Staying at a Disney Resort gives you lots of amenities - a beautiful lobby and pool, on site restaurants and shops, proximity to parks or park transportation. You get to use any other resort pool or amenity - so you can go to the outdoor movie at Fort Wilderness one night if you want. You also get some small services like delivery of any park purchases to your resort so you don't have to carry bags all day or worry about your souvenirs being stolen. And, of course, the Extra Magic Hours that allow you to arrive early or stay late at a particular park.

As a family we have personal preferences that may not suit everyone. For instance, we tend to like to sleep in til about 9AM and the girls go to bed around 10PM so the Extra Magic Hours wouldn't give us any advantage. Since we don't have to worry about renting a car we prefer to rent a house rather than stay in a Disney resort. Any Disney guest (even those not staying on property) can use the Disney transportation - monorail, boats, etc. so we can still move easily between parks, etc. if we chose to. It isn't entirely about budget although it looks that way on first glance. Right now (April 2012) a Disney Value resort with Quick Service Dining plan is $276/night (not including taxes) for a family of four. A night at a Disney Moderate resort with  is $348 - or $2,088 for 6 days (not including taxes.)

We rented a three bedroom house with a private pool  for  $115/ night. That's $805 for six nights (not including taxes). The difference in cost is $851 less than the Value option and $1,283 from the Moderate plan. We will, of course, have to pay for all of our meals out of pocket. I think the Moderate plan is a good deal if you plan on eating all of your meals at the park - for example, a character meal (table service) would cost our family (3 adults and 1 child) about $200.

The Moderate plan costs includes 6 snacks, 6 Quick Service meals and 6 Table Service meals per person during those 6 days.  However, if you choose to use your plan at certain places - Cinderella's Table, Signature Restaurants and Dinner Shows - it will  "cost" 2 meals per person per event. If you use your meal plan for any of these you need to add the cost of at least one additional meal to your budget. Similarly, if your family wants to eat 3 meals a day as well as a snack you will need to budget for additional meals. If you have bought into the Disney Experience all of these will by default have to be on Disney property since you won't have a car. The Value plan doesn't include the ability to attend any prepaid Character or Signature meals. So if your kids want breakfast with Mickey, you'll need to pay for it privately, just like I will. Somehow, I bet most people end up buying a few extra meals or snacks even if they are on one of the Dining Plans. Who knows? Maybe they buy cold cereal and PB&J and just eat in their room a couple of times.


It's easy to spend to $200 a day for a family of 4 to eat on Disney property (1 character meal and you're there) which would make the cost of the house vs. the hotel even over 6 nights. Having done this before I know that we will eat breakfast at the house as well as some dinners and snacks. The cost is no different than our regular grocery bill - probably $100- 150 for the week. That leaves me with $1,043 (after theme park parking) in the budget before I hit the same cost as the Moderate plan. We will eat a few meals and snacks at the parks when we are hungry or staying longer than we planned. We also will have the ability to eat at local restaurants or even Burger King if we feel like it. It is possible that we will spend an additional $175/day on food, but unlikely. Which is one of the reasons we rent a house.

Floor plan Caribbean Beach Resort

The other is SPACE. We like not only having a kitchen, but three bedrooms and a living room. We don't have to go to bed when our kids do just because we're all crammed into the same room. A typical room at Disney's Caribbean Beach Resort  is about 340 square feet. These are among the largest rooms on Disney property that aren't suites or villas. The house we're renting is approximately 1500 square feet. My oldest doesn't do well in the heat so we typically go back to the house in the middle of the day.

With a house we can spread out. Amanda can play on the computer or watch TV. Danielle can watch a different TV, nap or swim. Kevin & I can read, swim, watch TV.  We've rented houses in several places. This year we are returning to a house we rented through Florida Spirit Vacation Homes. In addition to a full kitchen and 3 bedrooms we'll have a private pool, washer & dryer, 2 full baths and 4 TVs. Another advantage for our family is that everything is on a single floor- no messing with transport, elevators, long walks etc. pushing a wheelchair every time one of us wants a meal or a swim.

Floor plan of the house we're renting

The Stuff Kids Lose

I love this time of year. The winter is coming to an end, the flowers are starting to bloom and there is so much to look forward to!

First we get to pick summer camps and plan vacations. Danielle is already signed up for a day camp at Out of The Box Art Studio. She'll need to bring a painting shirt or smock and her lunch box every day.

I'm not sure whether Amanda will be going to summer school or camp this year, but either way she is likely to be spending time with people who don't know her well. I'm not going to risk a repeat of last year when she was sent to the wrong school and no one knew who she was.With a nonverbal, autistic child labelling every item is a necessity. I even have one on Amanda's IPad. 

In addition to camps, next year Danielle will be attending a school that requires she wear a uniform. I'm thrilled because it means no more early morning battles or weird outfits (today she wore a striped dress with striped tights!) It also means that a lost coat is probably really lost. You can't exactly call the school and say, "Ours is the navy fleece jacket with the monogram" when that's what everyone has to wear.

So - naturally that means we need labels. I never have to think twice about where to buy my girls' labels. I'm a Mabel's Labels BuzzMama because they are really the best labels I've ever tried. They stick to anything and everything. With summer fast approaching  its time to order more.  They have a camp combo that comes in great colors with cute camping icons like a campfire or a canoe.

I love the color choices and fun icons. My favorites are the dolphin and the flower. However, Danielle has already chosen her icon - a tiara! How typical of her- the more glamour, the better. I think I'll order Danielle a Basic Combo Kit that comes with metal bag tags as well as stickers for her shoes.  And for Amanda, a set of skinny minis with a heart since her name means "beloved".


Disclaimer: As a Mabel’s Labels Buzzmama I'm acting as a volunteer ambassador spreading the word about products and company. I may receive free products in exchange for my involvement in the program.