The Happiest and Most Accommodating Place on Earth!

We all need a break and sometimes family vacations are not a break. In a typical family I know that vacation trips are a lot of work for moms in particular. There is a lot of packing and planning well before the trip departure as well as managing the children on the trip. Many dads are a big help but for most people I know the mothers are the organizers and even the planners in many cases. When you have a special needs child this process can be overwhelming. David and I have traveled with our children many times and it is a lot of work but usually it is worth it. We have been to the beach with Nadiya 3 times, once to Washington, DC and 3 times to Disney World in Orlando. Even though I felt I needed a spa afterwards, David and I agree that Disney is the most accommodating place in the world for a child with special needs and their family.

We want other families to know how manageable a trip to Disney can be with a special needs child. It is work but usually well worth your efforts and in the end you will have pictures and memories that cannot compare. This article will share our most recent Disney experience as well as provide a how to guide for families who have never traveled to Disney with a special needs child. Even if you do not have a special needs child this information can be very useful for typical families as well. We have discovered many things with Nadiya that most people may not even know about.

 The Flight Experience

         Our family uses Southwest airlines. We have found them to be very accommodating to families who have a special needs child. When you have a child with a disability, especially if they are wheelchair bound, you must be a loud voice for that child. Plan right away to advocate and educate because no matter where you go that is what you will be doing. Resister ahead of time so that you can get A class seating. This will allow your family to board the plan first and your child’s disability entitles you to do this. When you check in your baggage you will check in your child's wheelchair and get a tag for it. Your child will remain in their chair until you board the plane. At that point you will transfer your child to the plane and the flight attendants will see that the wheelchair is put in the plane’s cargo hull.

        Your TSA experience could get interesting. We have had several different experiences so anything is possible. Being calm and prepared is crucial to you having an acceptable experience. If you become angry and belligerent they very well may haul you off kicking and screaming until you miss your flight. They have a lot of power and some of them respect that power and others abuse it. Don't set yourself up to be a victim. Cooperate and plan ahead. You can advocate and still respond appropriately. You may want to say, "Look genius, my kid has Cerebral Palsy. He isn't getting out of this chair unless you carry him" I don't recommend this. You can say, “My son is severely disabled. How can I help you safely check him?" They will be more willing to work with you and won’t see you as a threat to national security. If someone is truly inappropriate you reserve the right to speak to a supervisor. We have mostly had very good experiences with TSA. They have been compassionate and appropriate for the most part.

           Some airports have an express handicap line for the security check. Orlando is one of those airports. I suggest you bring all of the medications your child will need in a carry on bag. Some of Nadiya's compounded drugs require refrigeration so we pack those meds with ice packs. I also include a current medication list and have one of Nadiya's physicians sign a note stating that they must be kept with her at all times. This has been helpful. When TSA sees how organized you are they can quickly check everything. We have had them look through her medications but they have never opened the bottles. They have asked David what something is and have been satisfied with the answer. Since Nadiya is on the Ketogenic diet we have to bring a day's worth of meals with us. We have a doctor's signed note stating this as well which we keep in her food bag. They usually want to check her wheelchair. Our first trip, back in 2008, they asked if she could walk. I told them no and they made me carry her and hold her while they tore apart her Kid Cart therapeutic stroller which is a wheelchair. She was only four years old but she was heavy to hold while they did this. Luckily David knew how to put the chair back together because they ripped all of the padding out as if a four year old disabled kid were likely smuggling some sort of contraband. I felt they were a bit aggressive with the wheelchair. They walked away and left us to deal with their destruction. This never happened again. We have been permitted to leave her in the chair and have two officers check the chair and her. This last time the Orlando gave me the option of taking her out so that the process would be faster. I helped Nadiya walk through the metal detector. This was easiest for us because Nadiya can walk short distances with full adult assistance. Over all most TSA agents are kind and respectful. As with anything there are always bad eggs in the group. 

 

Once we are through the security we find our gate. Immediately we check in and remind them that we have a disabled child with a wheelchair. People need to be told or they will not know. Always approach someone in a friendly manner and ask any questions that you may have. I always say thank you no matter what, even if I am unhappy with the circumstance. A few minutes before boarding you will want to stand at the front before the gate and make your child's presence known so they don't overlook you. You will board first. I take Nadiya while David takes Anastasiya and sets up our CARES Aviation Restraint. http://kidsflysafe.com/ This is an excellent restraint for special needs children who are too big for your lap and who have car seats too large for a plane. I show the flight attendant how to fold Nadiya's wheelchair and then carry her onto the plane. This time I was able to make her slowly walk with my assistance onto the plane. This was easier for me because the isle is so narrow. David usually secures Nadiya in her seat. I sat with her for the first two trips but David sat with her for this third trip. Occasionally she needs to be adjusted in her restraint and since she is 49lbs now that is hard on me. David can physically manage that better.

If your child is susceptible to illness or has a compromised immune system a plane ride can be rough. That is usually why we choose to go to Disney in September when it is less crowded and flu season hasn't started yet. This time we went in late November. I was very worried and of course "Snotsy McGee" sat right next to David. I was livid. Luckily she spent the flight hacking into her scarf. You really have to plan for this if your child could easily become ill. In Nadiya's case a severe respiratory illness could result in unstable break through seizures which would ruin our trip. Bring some disinfecting wipes in a Ziploc bag to wipe down the seat, tray, and window. Maybe Snotsy sat in your seat on the previous flight. Do you want to catch that? Bring a mask or 4. If Snotsy hadn't coughed into a scarf the whole flight we would have had to protect Nadiya and maybe ourselves from this woman and her obvious respiratory infection. If someone vomits on the plane from a gastro bug your doomed unless you are masked. We all take risks.

 

Our children do great on the flights. The first time the take off and the landing hurt Nadiya's years and she cried. You can purchase a bottle of water after you get through security which you can take on the plane. Having your child drink can help with the ears. Now that Nadiya is older she loves taking off and landing. It is like a fun ride to her. She does kick the seat in front of her so Anastasiya and I sat in front of her. A stranger would not appreciate her kicking them all the way to Orlando! We usually wait to be last to exit the plane. This allows lime for a flight attendant to bring Nadiya's chair to the door. I always remind them when we land so they don't forget her. Nadiya can look very typical at a casual glance. They can easily forget she needs a wheelchair. It is also easier for me to have Nadiya walk off the plane without a crowd impatiently pushing us.

 
Where to Stay


Here with Merida from Brave

When you plan your trip you must first decide what your needs will be with your child and then look into having those accommodations made. For us we have many needs for Nadiya. She is potty trained 85% if she has an appropriate adapted toilet. She does not at Disney so we bring our Leckey Potty Chair http://www.leckey.com/product-care/easy-seat-potty-trainer-how-to-assemble/ We put it in a box and check it as baggage. The bowl comes out and a seat and tray are placed in it so it functions as both an adapted chair and potty. We use this to feed Nadiya her breakfast and have her use the potty in the morning and evening. In the park we do not have access to a potty so we use the changing tables which I will discuss later. We also need to make Nadiya's Ketogenic meals so a kitchen is a must. Nadiya is big enough now to sleep in the pullout sofa with her sister. The resort provides a bed rail so Nadiya will not fall out. She is able to sit in the bathtub now without me holding her so we can bathe her easily in the tub. We belong to the Disney vacation Club so we always stay on Disney property. We can have groceries delivered the day we arrive if we set that up in advance. We have been able to get everything delivered except Nadiya's heavy whipping cream. Our first trip they were able to find some in their restaurants. Now we give the cream to our friends who drive down.
I prefer to stay at The Boardwalk since we can take a boat to Hollywood Studios or Epcot or we can walk to Epcot. From Epcot we can get to the Magic Kingdom on the monorail. We only have to take the bus to Animal Kingdom or Down Town Disney. This past trip The Boardwalk was booked and we could only get reservations for Saratoga Springs. We could walk or take a boat to downtown Disney only. The parks required a bus ride and sometimes a significant wait for the correct bus.

It's not your typical bus ride...

           

Nadiya on the bus

All of the Disney buses are equipped with lifts or ramps for wheelchair or scooter access to the bus. Some buses have 2 spots for anchoring wheelchairs or scooters and some have 3. In order to access the wheelchair or scooter compatibility several seats must be folded to expose the space and hooks for the belts. Great, right? Well it can be most of the time. Logistically the buses are set up to meet the needs of a disabled child but socially not so much. Let's start with the waiting line. There is a separate line for wheelchairs and scooters. This allows a handicapped person with equipment to board first. This would also apply to people with walkers, casts, or crutches. Really anyone who cannot stand and who could be injured climbing the steps of the bus can access these accommodations.

Sometimes the other people in line can be the problem. I have a policy that I have developed. If people are rude and inappropriate to Nadiya privately then I deal with them privately. If they are publicly offensive then I publicly deal with them. On this past trip I had two very similar experiences. As I approached the driver to make sure he saw Nadiya a man in the front of the line yelled obnoxiously, "This is the front of the line. The back is that way." So I turned to him, smiled and loudly explained, "Yeah, well we have a child in a wheelchair. She needs to get on first." I spoke clearly and loudly emphasizing the word "wheelchair". In both cases the men were apologetic and no doubt embarrassed. This is highly effective in a crowd especially if you are appropriate and not picking a fight but instead educating the ignorant. People tend Many of the pediatric wheelchairs look like strollers. Where this style is often preferred by parents it causes a lot of confusion. Since there are many over sized and over aged kids riding in strollers at Disney this confuses people. I always hold up Nadiya's handicap card, which I will discuss later, to let the driver know that Nadiya needs wheel chair access. If the driver does not see me or nod to me I walk across the front of the line to tell him as the door opens. If the driver loads the bus before letting your child board then there may not be enough space for the wheelchair. Usually the driver smiles and acknowledges that he or she saw Nadiya. Sometimes they ask if it is a wheelchair. Either way is proactively and politely ensures Nadiya's needs will be met. The drivers are generally wonderful with Nadiya. Sometimes they are unfamiliar with Nadiya's chair so David shows them where the metal loops are for the bus belts and he often assists them. We also tell them the chair is crash tested. This is good because the next time they see a Convaid Cruiser like Nadiya's they will know. to side with the family with the disabled child and not the inappropriate and rude person. If they would have quietly confronted me I would have given them the same respect and quietly explained. Maybe these men learned a lesson. It is important to assess the situation. There were many wheelchairs that I saw that resembled strollers. I visually assessed the child and the chair to quickly realize they were disabled. I know Nadiya looks typical at a glance but if you watch for a minute or two it is easy to see that she is older and extremely impaired. Her neurological problems are evident pretty quickly. Disabled children are sometimes invisible to others. It is important to comprehend a situation before you get into a confrontation. I feel it is my mission to educate people and make the world a better place for the truly disabled. Important Protocol for Buses I believe this is very important information for people to know. There is a sign posted in each Disney bus indicating the select seats which are priority seating for wheelchairs and scooters. It states that passengers must give up these seats. So if a partially full bus pulls up then the driver must ask people to move from the handicap seats if there is a wheelchair or scooter. That is what the drivers are told in training according to a Disney resort worker assigned to the resorts bus stop. If they do not do this you can report them so make sure you see their name tag. We had one incident where the driver did not ask anyone to move and told David and I that there was no room for Nadiya on the bus. Through the window I clearly saw people sitting in the handicap seats so wheelchairs were not already occupying them. He then allowed about twenty passengers to board the bus leaving Nadiya to wait for the next one. He was required to ask the people to move. If I had known that then I would have asked him, "Sir have you asked anyone to move?" He was clearly avoiding a confrontation. What he failed to realize is that he will have an even more uncomfortable confrontation if a parent with a disable child gets hold of him. The passengers have the right to refuse to move and then the bus driver can't do anything about it. Seriously though do you know anyone who would deny a child in a wheelchair their seat so that they can safely ride? If you know someone that selfishly rude then answer this...would they deny that child in front of a bus load of people? Probably not. If the handicap places are taken on the bus already then that is acceptable or if the bus is completely full and no one is able to get on then that is also an acceptable reason for them to deny Nadiya access. What that driver did was discriminatory and I am sure it was because he didn't want to ask the adults sitting there to move. Had I known to report him I was assured there would have been follow up. It won't happen again. As a family you need to know that you may have to stand but your child will get the accommodations they need. If the bus isn't crowded your family is entitled to sit with the disabled child. If you know how this works then your transportation experience will be much better. The Parks    Anastasiya, Nadiya, and David on "It's A Small World" When you arrive at the parks you will have to go through a security check to enter. This is pretty quick even though we have a lot of bags. Nadiya carries her backpack and lunch cooler bag for her Ketogenic meals on her wheelchair. We have a camera and Anastasiya and I each have a small purse. We are able to split the bags up between us and quickly have them check. Be ready and you'll get through without incident.  Once in the park go immediately to Guest Services. Ask them for a handicap pass. I find if I explain that Nadiya is severely disabled and will need to remain in her chair for some rides or transfer with one of us carrying her they get it. The first year we were given the wrong pass because the park worker thought Nadiya was a young child in a stroller. It took about two days for us to have that corrected. Now we know. We get a red card to show the ride attendants and there is a red tag on her chair indicating that it is a wheelchair and not a stroller. Still you will need to actively inform park workers of this as they will continue to ask you if the chair is a stroller. Kids who are in more standard looking wheelchairs will probably not have this happen.     The girls with Ariel  Your card entitles your child and family up to 6 people to use the fast pass lane or handicap lane, if it is separate, to board the ride. It is significantly faster. Sometimes it is difficult for a disabled child to wait in long lines for an extended period of time. Their level of discomfort from the crowd, heat, or being confined to a wheelchair can be intense. Disney recognizes the need for accommodating these children and adults for that matter.           Nadiya on the Teacup ride Some of the rides are equipped to accommodate your child's wheelchair. It is amazing how many different ways we have seen this work. Some of the rides require transfer into the seat. Nadiya is able to do this on many rides if we sit with her. The staff will stop or slow down the ride to get your child on the ride if you require it . I am very uncomfortable with the moving platforms while I am carrying Nadiya. David does a lot better with this set up. The staff will work with you but sometimes we have had to make them understand the situation.  The Haunted Mansion ride comes to mind. We got on this ride 3 or 4 times over the course of our trip. One time a guy wanted us to carry Nadiya a challenging distance rather than allow her wheelchair to the furthest point possible. He assumed that because we were transferring her we could do this. I had to tell him that Nadiya is 49 pounds and cannot walk with assistance under these conditions. It was narrow and dark and there were other people walking through. he understood and Nadiya was accommodated. Sometimes you may need to spell it out.   Nadiya rides Toy Story in her wheelchair  The Toy story ride in Hollywood Studios was great. Not only did it accommodate Nadiya's wheelchair but there was an adapted button on the gun so that she could play the arcade game. Every time Nadiya gets on this ride she immediately pushed the button and grabs the wheel to turn the gun. She knows how this works.   Nadiya signs beautiful as she is loaded into the boat ride.                                                 In the Magic Kingdom there is a boat ride that has a lift that safely lifts Nadiya in her chair onto the boat. The safari ride in Animal Kingdom allows a wheelchair in the first car. There are accommodations and handicap seating in all of the Disney shows. You just have to make your needs known to a cast or staff member and they will tell you what is available.  Nadiya on the safari These accommodations mean the world to a family with a disabled child. It is uplifting to see Nadiya so excited and happy. She expressed pure joy to be included. Nadiya does not have a sign for to express her appreciation of something beyond "I like". Lately she has been signing "beautiful" to describe things that are truly wonderful to her. She signed "beautiful" throughout the trip. She signed "play" since she does not have a sign for "ride" Being able to ride these attractions and be included in the fun was absolutely wonderful for Nadiya. Don't be afraid to ask questions about the appropriateness of rides. Ride yourself first to see if it is manageable for your child. David and I have done this before. For those of you with typical children who travel to Disney with your families maybe this will give you some insight as to why some people are given the privilege of using this handicap line. It is easy to become frustrated when you have been waiting a lot longer, especially when it is hot and your kids are complaining. Just know that I would give anything to have Nadiya stand and wait in that hot line and verbally complain in actual English. This isn't the case for us. Disney has found a way to make the experience a little easier for families who struggle every day just with daily life. Cut them some slack and say a prayer of thanks that you are not managing what they are managing. It frustrates us when we are met with impatience and lack of understanding. Being able to include Nadiya on our vacation is a big deal. We know this is also true for other families with a disabled child. We know the privilege is abused and I will talk about that later on. It doesn't take long to realize why a family needs this accommodation if they are truly disabled.  David and Anastasiya ride together on Toy Story Helpful Management Ideas Lets talk about the food...   If you have feeding challenges Disney is still doable. As most know Nadiya is on the Ketogenic diet and has been for over 6 years now. Disney is familiar with the Ketogenic diet and in some cases may be able to prepare Keto meals with guidance. Since Nadiya is not a "typical" child with epilepsy she has many other disabilities that complicate her life. Feeding difficulties that include chewing and swallowing make it difficult for Nadiya to eat regular foods. Nadiya requires pureed foods or foods that are considered a soft mechanical diet. Though we are working on challenging textures in feeding clinic Disney isn't the best place for us to manages those foods. David makes Nadiya's meals for the day in our kitchen at our resort. We put them in a cooler type lunch bag with ice packs. Nadiya gets breakfast in the room. We are able to manipulate the diet so that the meals are still evenly spaced but that she is eating with us at the restaurants for the most part. There are snacks and occasional meals that must be given to Nadiya while we are in the park. We can manage either situation. Unfortunately there is a Florida state law now that prevents restaurants from heating up food that is brought in by a family. This was a huge obstacle at first but we found a solution. The waiter can bring you a bowl of very hot water and a towel. Most table service restaurants can provide a large enough bowl of hot water for you to sit your sealed container of food in to heat up. Place the towel over the bowl to hold the heat in. Nadiya's pureed foods heated quickly with this method. The ketogenic diet has a lot of butter in the meals. It is important to melt the butter to make the meal more appetizing. Quick service food areas are not as accommodating. They usually have a cup of hot water for tea and that is it. You will have to transfer your food into a small container to soak it in such a small cup. If you plan ahead you can avoid this. The other option is the baby care stations. There is one in each park usually located in the entrance area near customer service. These areas have a changing area suitable for babies and large disabled kids assuming you can lift them to the table. There is a small toddler size public toilet and an area with a microwave to heat up food. These centers are very nice but not convenient if you are on the other side of the park. If you plan accordingly you won't run into a problem. For tube fed children the baby care center is a great place to feed your child. It is semiprivate, clean, and comfortable.  The park and resort restaurants address food allergies as well. you must make the staff aware of any food allergies your child may have. If you are bringing your own food for your child for medical reasons you may have to indicate that. I also have a signed doctor's note on a script that says Nadiya is on a strict Ketogenic diet and must only consume food prepared by us. If you plan ahead and know what to expect you will manage meals with little difficulty. We even took Nadiya to meals that were included in a show. She did everything we did but ate her own food instead of the buffet or menu provided. A Case of Bathroom Management.... This is my least favorite topic because it is my most frustrating and challenging task. Nadiya is 49 lbs and about 48 inches tall. At home she uses an adapted potty but in public she does not have access to this. She is too small for a public toilet but too large for a typical changing table. Disney is somewhat of the exception. Most parks have large metal or solid surface changing tables. Magic Kingdom's changing tables are the largest having much room to spare. Epcot's are the smallest where I barely fit Nadiya diagonally. If you have a large child, stay away from the crowded quick service restaurant bathrooms especially in Epcot. They are short on space so their bathrooms are small and the changing tables are for infants only. The companion restrooms are usually occupied since many elderly people use them. If you are not near a baby care station your best bet is the large public restrooms in the parks. Down Town Disney's bathrooms only have flimsy plastic baby changing tables so you may have difficulty there. In the other parks the large bathrooms are easiest to manage in. Before I get Nadiya out of her wheelchair I get long strips of paper towel to paper the changing table. I get Nadiya's wipes then her diaper and Poise pad inserted and set up before I even put her on the table. I change her quickly and get her back in her chair. It is easier if there is someone efficient to help me. My friend Lisa and I had it down to a science. There are some drawbacks that you should prepare for. Most facilities have a paper towel dispenser and a trashcan next to the changing table. A few do not. Assess the work area and get what you need before removing your child from their wheelchair. Sometimes the changing table is directly behind a handicap stall with a swinging door. I have handled this a few ways since I was almost taken out by the door one day and Nadiya's wheelchair has been hit by someone swinging the door open. I am aware if someone is in the stall and I wait to hear the toilet flush so I can grab the door when they swing it open if possible. If someone goes to use the stall next I ask them to be careful that they don't hit us when they come out. If the stall is empty I have parked Nadiya's wheelchair in front of it. A non disabled person can wait until Nadiya is safe and clear or use another stall. Should a disabled person need to use it I would move her chair but that has never happened. Touchy Toilet Tribulations  Always remember you are your child's voice. I will say my incidents in the bathroom are becoming less as Nadiya gets older. Two years ago women yelled at me saying to get to the end of the line. I had to reply with, "My child needs a changing table; were you going to use it?" This shut them up but made me angry. Technically Nadiya gets first dibs on a handicap stall should she be able to use the large toilet if no other disabled person is waiting for it. This goes back to the idea of assessing the situation because I am sure they thought her chair was a stroller back then. This time no one said anything to me as I went past a line to find the changing table. In years past I had several occasions where a mother plopped their infant on a large changing table at Nadiya's feet completely oblivious that Nadiya could kick their baby into next week. Each time the mother was a non-English speaking tourist. They understood "no" but I'm pretty sure they didn't understand that Nadiya could cause their child to have a traumatic brain injury. I found this to be very frustrating. This time I said, once again to a foreign guest, " No, don't. My child has Cerebral Palsy. She will kick your baby in the head". This was accompanied by hand gestures. The woman got it and let me finish. For the most part people were friendly and waited patiently. They watched me lifting this 49 lb eight year old onto a changing table. They saw she did not have full command over her body. Most were compassionate and friendly. There was one bad experience in the bathroom this past trip. Lisa and I were managing a poop explosion that we did not have an adequate amount of wipes for. Anastasiya and Lisa were wetting paper towels at this point. Nadiya's chair was parked by the handicap stall and we had our hands full...literally. A clueless woman with two perfectly healthy school aged children stood behind us waiting with a confused and somewhat impatient look. She asked if she could get by. I asked her if she needed the changing table knowing that wasn't likely the case. She looked at the handicap stall and said she needed the big stall. Now there is a difference between need and want. Sure, many moms use the large stall with their kids. This is fine if there isn't a disabled person who needs it and in our case we needed the space to clean Nadiya up. All I said was she would have to wait a few minutes until we were able to get Nadiya back in her wheelchair. Remember that word "wheelchair" can snap the oblivious back into reality. I did not have to remind her that she wasn't a priority for the handicap stall because she quickly agreed to use a regular stall. This really bothered me because it was a reminder that so many people are disconnected and unmindful of anyone else. They are not faced with the challenges we have so therefore they are unconcerned. It makes me grateful to those who do see the challenge and are part of the solution rather than the problem. These are things you will have to deal with before going on this trip. If you are consumed with anger over other people's careless attitudes you will not enjoy yourself. Decide how you will confront these moments in advance and it won't consume your trip. The Company That You Keep Sometimes it is best to go on your trip with others as long as they are a good fit and can be helpful. If you go with family or friends who create more chaos than comfort that may not be good for you're family. We once went on a trip to Europe with a friend who wandered off through villages and cities in search of the perfect sausage. He never told anyone where he was going; he just disappeared. We spent way too much time looking for this guy. We didn't have children yet and so we dealt with it. In our situation now he would not be a good travel companion. We had friends who were at Disney at the same time we were. One family was there for half of our trip and the other for the entire trip. In addition my parents and my sister's family were there at the same time. We did not stay with any of them but we met with each of them at different points. Know your pace. Our family keeps moving and we like to see as much as possible. Our friend's have children the same age and they are similar to us but the kids have different favorites. My sister's kids are younger and they enjoy Disney at a slower pace. That is all OK but we go our separate ways for some things and come together for others. Know your pace and your interests and match activities accordingly. You do not have to be tied to one another to enjoy the trip together. If it looks like a duck it isn't always a duck... There is a phenomenon at Disney called the scooter. Scooters are not really wheelchairs. I believe the original purpose of these scooters was to assist the elderly or those with orthopedic problems that prevented them from walking long distances. The reality is that anyone can rent a scooter and they do. Most feel that with the scooters come all of the accommodations and privileges that a disabled person would get. As a result they are renting handicap accommodations. Nadiya has had to wait while a completely capable person with a rented scooter got on a ride or on a bus. We have had to wait for another bus because a bus was filled with scooters. Where I recognize that there are many people who need a scooter there are just as many, if not more, who do not. They abuse the handicap accommodations and there isn't anything that can be done about it. I would like to see Disney require a doctor's note to document a person's disability in order for them to get a card. Anyone can rent a scooter but anyone shouldn't be able to use the handicap line and seating. Disney does not require documentation. There have been cast members who have recognized the difference between Nadiya's impairment and that of a person renting a scooter but that isn't always the case. A few years ago we saw a family with a courtesy wheelchair taking turns in it. That sickens me because I would gladly give them Nadiya's chair if she could be "typical". If the price for the handicap line was that they had to have a child as impaired as Nadiya I am sure they would pass. Obviously they do not think of it that way. I am not including people with casts, injuries, and orthopedic or medical problems that affect mobility in my judgment. They are legitimate. There are other people there just like you... Nadiya dancing with her new friend You will not be the only family managing a disabled child. There is a kinship among these families. They often smile or not in appreciation and recognition for what you are managing. Many will talk to you and compare notes. This can be helpful if they have tried something you haven't and can give some insight. We were waiting for a boat to Camp Wilderness for Mickey's Backyard Barbecue. A girl with special needs approached Nadiya and said hello. We then began to talk to the other family and since they had 2 children with wheelchairs they were seated at the table next to us for dinner. The kids danced together and had a great time. Another family approached us at Hoop-Dee-Doo and asked about Nadiya's condition since she seemed so similar to their son. We have had families comment on Nadiya's wheelchair. I saw a family with a disabled child exit a ride and I was able to ask where the wheelchair entrance was. They are usually open and friendly. I saw a child who was on a vent get on the It's A Small World ride. Even if you think it will be difficult others have done this and it worked out for them. There are many children from the Make A Wish Foundation at Disney since that is often their wish. They manage this trip with success and we see so many of them smiling. Special children get special treatment... We had dinner one night at Marrakesh which is the Moroccan restaurant. Nadiya enjoyed watching the belly dancer and listening to the live music. the man playing the sitar spotted Nadiya and came over to her and played for her up close and personal. He did not do this for anyone else. A waiter brought her a fez to wear while having her picture taken. They were so good to her. Nadiya is noticed where often in the world she is ignored and forgotten. At Disney everyone goes out of their way to ensure that she is having a good experience.   Nadiya loved the Christmas lights Me with Anastasiya and Nadiya at the Dance party Nadiya finally asleep with Nemo For us this trip gives us many wonderful memories to cherish. Life is uncertain. We want to have as many of these moments as we can which is why we go to Disney every other year. This past trip was the best. Nadiya was so engaged and so excited. She loved the trip and all of the adventures. Our friends convinced us to get on the dinosaur ride in Animal Kingdom. David and I put Nadiya between us and held on to her tight. I had an arm across her chest and held her hand and another arm between her legs so she wouldn't slide. David held onto her as well and she wore a belt restraint but the ride was wild. I was horrified and couldn't wait for it to end but Nadiya was laughing and squealing with delight. When the ride was over she signed, "Favorite". The next day we were on the hydroponic garden ride in Epcot and Nadiya's signed, "Want favorite"! When we saw all of the Christmas lights Nadiya signed, "Excited" and "Beautiful". She loved the rides and the shows and the overall experience. We spread her meals out from 8:00 am until 9:00 pm so that Nadiya would have energy for the long days. She remained seizure free and her stamina was amazing. We usually headed to the bus stop between 8:00 and 10:00 in the morning and didn't return until arounf midnight. While all of the other children were melting down on the bus and falling asleep, Nadiya was laughing and still ready to party. When the trip was over and we finally got home, we put Nadiya to bed. She had her own meltdown and was crying and signing, "All done". She was sad to see it all come to an end. We will always remeber this trip and we will look forward to the next one. Each time we go we learn more and it gets a little easier. I remeber be aprehensive the first time we went to Disney. Now we can't wait for our fourth trip in 2014. It is an experience that you grow and learn with. No matter how much work it is there is no other place on earth so accommodating that brings such happiness.



Metamorphosis

Nadiya and Anastasiya- Nadiya's birthday party

          Nadiya recently turned 8 years old..  We have been managing her condition for that long now. Even before we knew something was wrong we were still managing abnormal screaming and discomfort that we now believe were spasms.  We were also realizing that milestones were not being met.  Today it seems I am coming across many families who are newly realizing their child has a condition, disorder, syndrome, or disability that they will be managing.  These are the families who are drowning.  They feel alone and they are just beginning the mourning process.  Some are even still in denial.  I see the greatest loneliness in those who are at this stage.
          So many of these families want help but are not able to reach out.  I felt that way when we were going through this.  I used to feel that if I saw children worse off than Nadiya that it would be frightening and depressing.  At the same time I felt that if we saw those doing much better than Nadiya we would be frightened and discouraged.  There is a process that a family goes through where they must eventually accept what is happening. I remember searching for similarities in other families and there were none.  No one was talking about any of this and I felt alone. I needed someone to share some hope but there was no one freely giving this valuable commodity.  We had to find hope in Nadiya and in the beginning that was so very difficult.

         There is a phenomenon that does occur with the proper conditions.  We change and adapt and eventually we even embrace what life brings us.  It does not start out like that.  I think the beginning is the most terrifying and vulnerable time.  As parents we lack education and experience in dealing with a child with a disability.  I have even seen parents with children who have mild speech and language problems struggle with the reality that their child isn't "typical" and will need support in school.  I think it is our nature to want a "normal" experience.  It is what everyone plans for and it is what our future dreams are based on.  When something happens to change that it can be devastating to have to rethink a future.  It can get better even when you think that can't be possible.  I personally have experienced this transformation in my life.  Like so many other things in life it just happens and natures takes its course. 

      For years my older, "typical" daughter, Anastasiya, has hunted in the community common space among the milkweed plants in search of Monarch caterpillars or their eggs.  Each warm day while we waited for Nadiya's bus she crossed the street and eagerly examined the leaves of the milkweed but found nothing.  Then on a hot September afternoon she excitedly announces that she had found some of these coveted creatures after almost four years of searching.  She scooped the colorful, soft, plump, and squishy caterpillars into her hands their sticky rows of feet clinging to her, confused and searching for the food she took them from.  She picked some milkweed  for them to eat and joyfully showed the bus driver what she found as Nadiya arrived.  Nadiya looked at the bugs and shook her head "no".  There have been times in the past where she saw the caterpillars, frogs, praying mantises, and other critters that her sister collected and signed, "don't like"  Just saying no wasn't too bad. 

Monarch Caterpillar

      Anastasiya put the 4 Monarch caterpillars in a special critter carrier tank with a screened lid.  Every day she made sure the bugs had plenty of milkweed plants to eat picking it fresh.  The caterpillars grew quickly consuming the entire milkweed Anastasiya fed them until they were large brightly striped creeping creatures.    
       The raising of a caterpillar is an amazing thing.  We have done this many times before but never with Monarch caterpillars.  Caterpillars are most vulnerable when they first hatch and while they are growing through their earliest phases.  This is when they are eaten by predators or fail to grow and they die.  When they get bigger it is always exciting because we know they have a better chance of making it all the way to the chrysalis stage. Many people are uncomfortable with these bugs.  They find them to be creepy and strange.  My husband isn't a great fan of them but tolerates them in the house because of Anastasiya. 

Monarch Chrysalises
 

     It fascinates me how the bugs realize they have eaten enough and they position themselves in a row on a stick to form their chrysalises or cocoons.  The caterpillars hid within the secret cloak of the chrysalises and began to change.  Slowly they went through an amazing metamorphosis completely transforming.  After a few weeks the chrysalises began to turn black and slowly reveal their secret inside.  We could see intricately marked wings folded inside.  It was clear that they would emerge soon.



The chrysalis becomes transparent

      

       It was September making these Monarch caterpillars the fourth generation of the season.  Genetically these bugs would be different than the three generations that had hatched through the summer before them.  The first generations are breeders.  They go through the typical caterpillar to butterfly life cycle creating the next generation.  Generation four is different.  Genetically their makeup is a little unusual.  They will be migratory and fly a long distance to Mexico or California or even the Caribbean.  They will live for many months instead of weeks surviving the harsh winter in a warm climate.  This will ensure the future population of Monarch butterflies. 

The newly hatched Monarchs

      Very soon the chrysalises began to hatch.  A wet newborn butterfly emerged from each.  They clung individually to their broken chrysalises and dried their wet and wrinkled wings out for a few hours.  As their wings were drying the butterflies slowly pumped them filling them with blood and smoothing out the wrinkles from being folded in the chrysalis.  It was interesting to watch.  Once they were dry and ready to fly Anastasiya and her friend set them free.  At first they clung to her almost afraid to leave the comfort of her care but eventually they flew away.  We imagine they began their long fascinating migration to Mexico just knowing what to do, following their destiny. 
      

Anastasiya releases a newly hatched Monarch

       I couldn't help but reflect as I witnessed this process  that our family had undergone a transformation of our own.  We had survived and we became stronger because of it.  There comes a moment when life isn't all about the difficult but it can become more about the good things.  We have our frustrating moments and we have our battles that we constantly must fight but thorough it all we have found our place in the world finally.  We can see the joy in Nadiya's small triumphs.  We can find the comfort and peace of being able to manage her seizures with the Ketogenic diet.  We embrace the mission we are called to as her voice.  We try to help others who are in our position.  We can hope and rise above despair.  Where once we carried a huge heaviness, now we can fly away.  I saw this connection with the hatching of these Monarchs.  As parents of special needs children it can be easy to feel defeated.  We are often tired but there is an adapting that takes place.  We become better suited to manage this life that we did not choose for our families.  Sometimes it can even feel beautiful.  There is hope. 

        The symbol of a butterfly is one that means a new life emerging from the old or an incredible transformation.  That is what happens when a family has a child with special needs.  The family must transform their ideas of what their perfect family will be to a reality of what they are.  They must grieve their loss and accept their destiny.  They must find a way to manage their challenges and move forward.  They must find their place in the world and from their develop hope.  This metamorphosis continues through our lives.  How we emotionally nourish and care for our family determines how beautiful our butterfly will be. 

Despite her apparent dislike for bugs Nadiya is fascinated
by the newly hatched Monarchs

   

Accessibility: A Strategy and an Art

Nadiya's new wheelchair is much more
manageable than those we’ve had before.

.

It is the nature of living things to get from point A to point B. Even a flower will slowly climb up its stem in search of the sun’s rays. Along the way there are the typical obstacles that must be either avoided or overcome like the traffic accident that makes you late for work or the congested lobby that fills an elevator with no room left for you to squeeze in. We are always on the move searching to have our needs met and to meet the needs of others. This is the busy world we live in and most have become a productive part of it.

Now imagine if every journey was speckled with barriers forcing you to navigate around it or surrender. How functional would your life be? Would you accomplish much? This is what it can be like for a disabled person when they venture out into the world. There are challenges at every corner, some hidden and some in full view. Even the most confident and optimistic person can find themselves frustrated and dispirited.

I believe a significant amount of careless people must take ownership in causing many of these difficulties. There are a lot of selfish, oblivious people stumbling from point A to point B. Unfortunately they cross my path more often than I like. Nadiya is not able to pilot herself on any of these journeys so she relies on a competent adult to do this for her. I am often that competent adult. It gives me the opportunity to see things through her eyes. I can’t help but imagine her sadness and frustration as she passes through a world not designed to include her. What must she feel? I feel frustrated and isolated. I feel angry. Allow me to take you on an expedition in Nadiya’s wheelchair. When the ride is over I want you to ask yourself what do youfeel?

Along for the Ride

Nadiya's bus stop

It is early morning and time for school. We live on a dead end street without ample room to turn around on. The school bus is not permitted to drive to the end of our street. Once a driver backed down to pick Nadiya up and they got in trouble with their superiors. Most disabled children have door to door transportation, that is, unless they live on a dead end street. We have to walk to where the street forks. That is where Nadiya’s bus stop is. This is fine when the weather is nice but in

the pouring rain or freezing cold this isn’t fun.



To make matters worse there seems to be an extraordinary amount of people with driver’s licenses who do not remember the school bus laws they were tested on at the Department of Motor Vehicles. They fly past the bus while Nadiya is on the lift. I have chased some, confronted others, and the bus personnel have taken down license plate numbers to report them. How is it that there are people who would do this especially while a child is on a wheelchair lift?

A wet branch obstructs our path to the bus stop

The bus stop obstacles do not end with the drivers failing to stop for the flashing light. I frequently have difficulties just getting to the bus stop. There are the icy or snowy days where at least one homeowner does not shovel their part of the walk. Luckily we have a neighbor with a snow blower who will clear the snow but there isn’t much he can do about ice. Regularly there are tree branches blocking the sidewalk so that they hit me in the face. This is particularly fun when the branches are wet. On several occasions

A different day, different person no passage

No passage

people have blocked the sidewalk with their vehicles. This makes it impossible to pass sometimes without riding in the grass, off a curb, or into the street. Nadiya’s old wheelchair which was a Quickie Zippie would dangerously tip forward or sideways whenever we hit an uneven sidewalk crack so these off road adventures were particularly treacherous. It is also very frustrating that it is always the same people. I make it a practice to confront people when they do this so that they are aware of what they have done, especially the repeat offenders. This is most affective if Nadiya is there sitting inconvenienced in her chair. The visual usually hits home better than the words I am saying to them.

Off to the Community

This truck blocks the access to the sidewalk

for wheelchairs just to run in for coffee.

Assuming you get out of the neighborhood there is an abundance of other obstacles to tackle in the community. Handicap parking is probably my most frustrating to date. I have seen a carload of business men in suits with no apparent physical impairments get out of a car with a handicap placard. I can only assume it belongs to a family member, such as an aging mother, and they want premium parking for lunch. I have seen overweight people take a handicap spot when in many cases walking is healthier for them. I have always felt that handicap parking should be reserved for people with equipment such as a wheelchair, walker, cane, crutches, oxygen, cast or boot. In addition those with severe lung diseases and disorders that limit their ability to walk distances should have access. Anyone else can use the walk. There is no worse parking situation than having to load Nadiya in her chair from behind my van in the middle of traffic. Not only do I have to carry her there but cars speed recklessly by me endangering both of us. To make matters worse the handicap spots are time and again taken by those who don’t need them or those who don’t even have a placard. I have even seen people park across handicap crosswalks blocking the graduated curb access for wheelchairs and I have seen motorcycles park in the handicap accessibility isle. If law enforcement hired some meter maid or security type positions to ticket these offenders who park illegally they would make a great deal of money for the state.

Nadiya's soaked chair after traveling

back to the car on a clinic day

If the weather is bad the parking problem is usually worse. You will likely have even more people parking illegally because they don’t want to get wet. Meanwhile Nadiya is soaked as I am trying to get her in her chair because there is no hood or awning on the wheelchair. Holding an umbrella over her while pushing the chair is often a bad circus act resulting in both of us getting soaked. Besides the rain beware if it snowed recently; you will have even greater trouble. People who work in snow removal seem to think the handicap spots are a great place to dump the mountains of snow. If they have the sense not to cover the actually parking spot they usually cover the crosswalk area that accesses the wheelchair bound person with anything like the street, shops, and the rest of the parking lot. This forces wheelchairs into traffic which is never safe. Sometimes if the lot has not been graded properly your handicap parking may have an aquatic feature where it is actually under water. That’s fun. Don’t wear good shoes because you are likely to destroy them loading and unloading the disabled person and their chair.

Managing equipment in public can be difficult. All of it has to be unloaded and depending on your vehicle and the size and function of the Durable Medical Equipment (DME) assembly of some sort is usually required. If you are in a questionable location such as a mall during the holidays when assaults tend to occur, you are vulnerable. I like to think that if someone was to accost me that the wheelchair and or its unassembled parts would serve as a weapon of self defense but who knows how that would end. Nadiya had a wheelchair for awhile that used to randomly lose its wheel. This would occur in the parking lot as I unloaded it. Most of the times it was raining as I had to chase the rolling wheel as it escaped down the parking lot.

The next thing you will have to navigate is the accessibility of the place you are entering. A private residence will be challenging a public place is supposed to be accessible but sometimes their idea of accessible and yours does not mesh. You may have access to an elevator but it may not go up to all 16 floors. You may have to switch elevators because you can’t take a fight of steps that connect two different parts of a building. The automatic handicap doors may or may not work. In some places I find tossing a coin to see if it will work is pretty accurate. The isles in stores are usually very tight and some impassable. If you must use the restroom you will find that everyone uses the handicapped stall. This is ok, really. What isn’t ok is when a family of 4 is using it while a disabled person is waiting for the restroom. If you are in line and a disabled person is in line they get the handicapped stall when it is next available. It will take them 3 times as long to use the restroom with 10 times the difficulty. Give them a break. They are entitled to it and you can use any stall even with your kids. If you must put your entire family in the handicap stall wait until the disabled person uses it first.

Changing tables are a challenge that most don’t realize until they are experiencing it. Children who are disabled are often in diapers even if they are potty trained. Nadiya is pretty much potty trained but if she is not taken to a toilet when she needs it and it is not accessible she will have an accident. This is why she wears diapers. In public it is impossible for her to use the toilet since she is so small and has physical disabilities. She has a small modified potty at home that I am unable to bring with me. Children with moderate to severe Cerebral Palsy or other profound physical disabilities need a changing table. The infant changing tables do not support the height and weight of a 6 year old. That parent is forced to lay their child down on the floor somewhere to change them or go to a large enough dressing room or to their car to change their child. We were on vacation in Disney and where their restrooms accommodated children like Nadiya with their large metal changing tables the public did not. Many people were impatient. Some thought I wanted a stall and was cutting through the line. Twice women placed their infants at the bottom of the table below Nadiya’s feet to change in tandem with me. I had to tell them Nadiya has Cerebral Palsy and that she would kick their infant in the head if they were that close. I told them I was moving as fast as I could and please be patient. Who wants to have to say this once let alone twice?

These examples only highlight a small portion of what happens when a disabled person goes out into the world. I asked you to assess how you feel after reading this. Maybe you are frustrated and find these scenarios upsetting. Knowing what you do now please be patient and educate others who are being insensitive. I said I wondered what Nadiya felt. Honestly I think the frustration is all mine. She knows mommy will take care of her no matter what and that I will be her voice. Nadiya loves being included in the world. She is fascinated by all that we take for granted. That is a reason right there for me to keep fighting for her rights and for her accessibility.

There are plenty of wonderfully accessible places in the world too. I will highlight those in a future article. They are the model for the rest of the world to emulate. I have great hope that someday all people will have access and their mobility needs will be met much easier than they are now. Until then I will continue clearing the way for Nadiya.