Our first time traveling with our special needs son.

[Mouse's Shadow]

This is a trip report of sorts, but it will deal with our experiences traveling with our son who is wheelchair bound. I thought about putting it under trip reports, but thought it would better be suited for here. I do plan on writing a TR for that board.

This was our first time traveling with our son since an accident left him severely handicapped 5 years ago. I had so many questions as I planned this trip, and I went to multiple sources to find answers. Yet, there was information that was hard to aquire. Some things that we just had to figure out for ourselves. So this is a record of our experiences; hopefully it will help those who may have the same questions or fears or concerns..

Our first hurdle was the flight. I wasn't sure what it would be like going through security. Things went fairly smoothly. We arrived at Port Columbus around 10 a.m. for a 12:25 flight. Since it was Saturday, the airport was virtually empty. Security scanned Jared and his wheelchair. They went thorough everything. I think they were even more thorough because they weren't busy. My son has a G-tube. I took a bottle of Ensure in the backpack, because I knew he would have to have something in his stomach before we would get our luggage. (I had shipped his food and other medical items down on Monday. but I wasn't sure how long it would take to have them delivered to the room once we arrived.) They questioned it, but let it go through. However, I did have a bottle of peroxide that was unopened that they confiscated. Not a big deal. My son has an ear that has a wound that has had a difficult time healing. We actually discovered that you can buy peroxide in small 4 oz bottles at the hotel. We were traveling with 5 carry-ons. Two were filled with medical and related items for my son. TSA officers emptied out all the contents and swabbed the inside of both of these bags ::cop: They allowed everything except the peroxide. I was even surprised that they allowed my Tide Pen through. (I found out later that they confiscated my friend's Tide Pen at the airport in Birmingham, AL.)

I had never seen a handicapped person loaded onto an airplane. So it was very interesting. Sorry, I forgot to take pictures. We were flying on a small commuter plane that was only 3 seats wide. They took our party down the elevator to the tarmac. They had a narrow seat with a seat belt to which we transfered my son into. Then they loaded the chair onto a lift and elevated him to the plane. They turned my son so that he was facing the front of the plane, then pushed him back, just beyond his seat. My husband then transfered him into his seat. My son is 21 years old and is 6'2". yet he was comfortable in the seat. We had taken the footrests off of his chair and stowed them in an overhead compartment. His wheelchair was stowed in the cargo hold. I was amazed at how smoothly everything went. I had nightmares about trying to get this kid on the plane. What was I worried about; of course things would go well. We were on our way to the most magical place on earth, right? We were cleared for takeoff.

Coming up next: Goodbye 48 degrees and raining - Hello 85 degrees and sunny. and Magical Express.

 

[cymomtx]

FYI - the lastest studies on wound healing have showed that peroxide does more damage then good. Have you talked to a wound care specialist about his ear? The studies show that the peroxide kills the good cells along with the bad cells and prolongs healing of wounds.

 

[MightyMom]

I'm interested in hearing more! Don't stop now.

BTW.... I was having a debate with a friend recently. I told her I felt very blessed that my son was born with a disability rather than become disabled later in life. For my son it's all he knows..... he doesn't know what it's like to be physically independent.... so he doesn't miss it. He was my first born.... so it's all I knew..... I didn't know what it was like to have a "typical" child.
I think it would be so much more difficult on a family in your situation. I'm just curious, do you agree?

 

[Mouse's Shadow]

Thanks for the info. Cymomtx. It's all healed up. It was an open wound for two years. I started using peroxide about 4 weeks ago, and now it's all healed up. No more seeping or bleeding It had actually quit seeping before we left for Disney. I was just taking it just in case. But thanks for the info. We can always use all the help we can get.

 

[Mouse's Shadow]

Hi Mightymom. Thanks for reading. Actually we have been very blessed. Our son has adusted amazingly well to his condition. He suffered a taumtic brain injury at the age of 16. He is the most positive person I have ever met. He has a great sense of humor and has worked very hard to achieve things that most doctors did not think possible. He has had to relearn how to move every muscle in his body. He started with his eyes, then his left elbow and knee, then moved on to ankle, wrist and fingers. It took two and half years for him to get his neck strong enough to hold his head up for any length of time. He has never had the anger and frustration issues that often accompany a head injury. If things had been different and he had not accepted his condition, and if he weren't so happy, I would have had a much harder time coping with things. We have been very blessed.

I love the picture of your kids. I will be posting pics soon. I have to get my computer fixed first. I'm taking it in first thing Monday.

 

[Mouse's Shadow]

If I had fretted about anything, it was the plane ride. Jared, the DS, doesn't swallow well. Stroke damage after the accident has left some permanent muscle damage on the left side of his face. It's hard for him to control his mouth muscles. I was really afraid that the pressure in his ears would make him misserable. 10 years earlier his little sister cried on the flights to and from FL because her ears hurt. His ENT had assured me that the ear itself was flight worthy. (We've had 2 operations and an open wound for 2 years.) I still worried about the pressure changes. (I can find many things to worry about )

I thing I held my breath for the first 30 minutes of the flight. But as it turned out, there was no need to worry. He did great. Must be that Disney Magic.

Instead, it would be me who would ache during the flight. You see I thought I was ready for all things great and small. I had gotten my son a small DVD player to watch movies on the plane and in the room. I thought I was so smart. But when he got on the plane, the flight attendent took our big bag and stowed it underneath the plane. Jared's DVD player was safely stowed in a backpack in the cabin, but the movies were in the bag that they stowed underneath. So Jared spent the entire two hours poking me in the arm. He thought is was hilarious and laughed hysterically during the entire flight. ( He has some short term memory problems so telling him to stop only worked for a few minutes then he was right back at it.) My arm was bruised by the time we touched down at MCO. The moral of the story: Put a movie in the DVD player before you leave home. I would not make that mistake again.

After we arrived in FL we were the last to depart the plane. And it takes some time to get the chair and lift in place so the process took awhile. A Delta employee put our big carry-ons on a wheelchair and escorted us to Magical Express. Delta provided fantastic service. It only took about 10 minutes to get through the ME line. I got in line while the rest of the party waited at the side. It took another 25 minutes for an accessible bus to POR to arrive. And then we were on our way. In all it took about 2 hrs from the time the plane arrived at the gate until we were unloading at the hotel. I can not fault Disney for the long length of time. It just takes awhile to travel with the wheelchair. I would recommend using ME to anyone in a wheelchair. I don't think we would have gotten to the hotel any sooner if we would have had to wait for an accessible van to transport us.

Next, Let the Magic begin. OK so there was a small glitch in the magic, but it did show up on our doorstep.

 

[SueM in MN]

Thanks for the nice trip report and glad things worked out well for you.
(I know very well the poking in the arm or side feeling).

I have to say that now I feel like I'd better write a trip report too.

 

[BillSears]

BTW.... I was having a debate with a friend recently. I told her I felt very blessed that my son was born with a disability rather than become disabled later in life. For my son it's all he knows..... he doesn't know what it's like to be physically independent.... so he doesn't miss it. He was my first born.... so it's all I knew..... I didn't know what it was like to have a "typical" child.
I think it would be so much more difficult on a family in your situation. I'm just curious, do you agree?

I had my spine injury 1 month before my 18th birthday. From my personal experience I feel I was better off having the injury then instead of at birth. I do know however that life is what you make of it, so there are some who will handle it no matter when they were injured and others who never do adjust.

For me growing up walking let my personality develop fully without one more thing to worry about. Would I be different if I had been unable to walk from birth? Would I be a better person? Would I be a worse person? All I know is I am who I am(thanks Popeye) and I'm happy enough being me.

One thing that is true is that by being a stubborn 17/18 year old during my injury I've been unwilling to accept the "physically dependent" tag. I may not be able to walk, there may be places I can't get to in my wheelchair. But I can go pretty much everywhere accessible on my own. I work and support myself, I do my own cleaning, cooking and take care of everything I can reach in the house. I'm planning a solo driving trip to WDW this December and I'm in the beginning stages of planning a solo 6 week cross country driving trip to celebrate the year I turn 50(2009). We're all different and EVERYONE has problems and limitations but we overcome/adapt to them or we might as well just give up and die.

 

[SueM in MN]

BTW.... I was having a debate with a friend recently. I told her I felt very blessed that my son was born with a disability rather than become disabled later in life. For my son it's all he knows..... he doesn't know what it's like to be physically independent.... so he doesn't miss it. He was my first born.... so it's all I knew..... I didn't know what it was like to have a "typical" child.
I think it would be so much more difficult on a family in your situation. I'm just curious, do you agree?

My older DD was a very precocious child. She was walking by 10 months and talking in 3-5 word sentences by 15 months. By 3 yrs old, she was using words like "fragile" in sentences and knew what it meant.

So, when my younger DD was born, we sort of were hoping for the same thing, but expecting she might not be quite as "quick" at doing things as her sister was. She did everything within the times she was 'expected' to, but didn't do anything well. (For example, she sat up by herself in the time range that is considered 'normal', but she was unsteady and would fall over easily). She also did some unusual things - she refused to touch blocks (but you could see that she really wanted to play with them) and she would cry when she saw other babies playing with the blocks. She was very social and engaged people. They usually guessed her correct age, but would ask if she had been premature (she was actually 2 weeks late, but was very small at birth). By the time she was 18 months old and was not walking or putting words together, we knew there was something that needed further evaluation. That's when we found out she had cerebral palsy.

The thing I feel blessed about is that we got a chance to know our younger DD for 18 months before we had to deal with her disability. While it is true that she has never known what it is like to not have a disability, even as a baby, she was very aware that other people could do things that she could not (the reason she cried when the other babies could play with the blocks). We have a lot of poignant memories of her as a young child - things like her 'directing' her sister to go on the swings, slide and other playground equipment so she could watch.

 

[D L and K's Mom]

Thank you so much for posting. I have a wonderful 16 year old who had a stroke at 6 months. David is a doll. We have gone to WDW many times . I was so happy to hear you had a good expereince with Delta and the flight. We have had 2 terrible flights with Delta (long stories, really bad laoding DS on and off the plane, got him stuck on the lift for 20 minutes etc... ). I can't wait to hear more about your trip!!!! Was the flight home as easy with the loading and off loading??

 

[MightyMom]

For me growing up walking let my personality develop fully without one more thing to worry about. Would I be different if I had been unable to walk from birth? Would I be a better person? Would I be a worse person? All I know is I am who I am(thanks Popeye) and I'm happy enough being me.

I wonder too if my son would be different if he wasn't born with a disability. He is so loving, giving and respectful. He really has a heart of gold. He is also very determined.

The other day he asked if I thought he could be an astronaut. In class they were discussing what they wanted to be when they grew up. One kid told Jordan he couldn't be an astronaut because he couldn't walk.

I told him that in space no one walks anyway..... so if that's what he wants to do he should do it.

Right now Jordan is physically dependent on me because he's young. But the older he gets, the harder it is on me to care for him. It's forcing him to become more independent. Already he's becoming more independent around the house. You should have seen the look of shock and horror on his face when I told him he had to start fixing his own snacks. It was hilarious! I think he was delighted that I thought he could do it...... but scared because he had never done it before.

My goal for him is to go off to college and live on his own. Is it possible? I don't know..... but how will we ever know unless I challenge him to reach his fullest potential.

 

[MightyMom]

The thing I feel blessed about is that we got a chance to know our younger DD for 18 months before we had to deal with her disability.

My son was born 2 1/2 months premature. He was sick from the day he was born. The day he turned 3 months old he woke up and his eyes were crossed.....not just a little crossed..... so crossed you couldn't see the dark part of his eye at times. We went to the pediatrician... and that's the first time we heard the words cerebral palsy. A month later following an MRI....he was diagnosed.

Now he's 7 years old and he's had more surgeries than birthdays. I try so hard to make his life as "normal" as possible..... it was easier when he was younger. Now he's becoming aware that people stare at him, or "baby" him..... or the worst..... pity him.

 

[Mouse's Shadow]

I feel like I need to introduce the whole crew to you. (Sorry forgot to do that earlier) There were five of us traveling from Ohio together.
ME - the planner, the worrier, the coordinator, the worrier. did I mention
the worrier?
DH - Not a Disney fanatic, but loves vacation
DS - 21 has a great sense of humor and knows how to make people smile
DMIL & DFIL - Offered to come with us to help with DS so that DH and I
could have a vacation as well. What great In-laws

Friends from Alabama met us
FS - Friend Sharon & FR - Friend Randy We've been friends for over 21 years,
but never get to spend enough time together.

The Ohio crew arrived at POR around 4:20. I went in and checked us in while they waited for the carry-ons. I had heard that the entire party must be present, but they processed our checkin without anyone else being at the window. However, I discovered I had made another error. (How could my planning have gone so awry? ) Because we were on the meal plan and DS doesn't eat, (He is on a nocturnal tube feed, which I give a bolus suppliment to during the day.) DS was not includeded in the reservation. Instead he appeared as a footnote. I had to purchase his park tickets seperately and pick them up at willcall. Only I forgot that I had to have the confirmation number to pick them up. The book I had written it in was packed in the checked luggage. Just another lesson in life: when you think you're prepared, your probably not. So I would have to wait and pick it up at the park. The parks have a master program for such tickets. The hotels do not. No big deal; I'm at Disney.

Are you ready for the magical glitch?Here it comes! The nice CM hands me a map with our room numbers on it. It's all circled and everything. I rejoin the crew in the rotunda, we go out the backdoors and we're stopped short. There is no wheelchair ramp. The whole central building wraps around the marina. I walk down the steps to see if I can see which of the 20 doors (ok, a small exaggeration, but not by much) on the back of this building is accessible. But those darn Disney landscapers are so clever, they are all hidden from site. So I lug the 3 carry-ons, I'm carrying, back inside. I tell everyone to stay put. I'll ask where an accessible door might be. I go back to the CM that just gave me the wonderful map and asked my (what I thought was a pretty legitimate) question. He got a funny look on his face and asked, "did you try all the doors?" Hello, I'm asking you so I don't have to lug these 3 bags to all 20 doors. He offered no other help. So I lugged my bags back out the door and just started waking in the direction of our room until I came upon one of those cleverly hidden entryways. I went back to the rotunda collected everyone else and we were off.

It was a great location. We were in building 14, with accessible room 1401 and connecting room 1402. FS and FR were in 1407. We were close to the food court and the South Depot. Which is the first POR stop. We heard others complain that the other stops seemed to have less busses pulling through. And just when you thought that the magical glitch had passed it pops up once again .

I opened the door to the accessible room, but it would only open a few inches. I squeezed in only to find out that the hospital bed that we had rented prevented the door from opening any further. There must have been grimlins at play. I fail to believe that a real person would have walked out of the room thinking, "I'm sure it's fine, they probably won't use the door much anyway." I called the front desk and told them the dilemma. But by this time, I'm a little tense.

Within minutes a nice CM came in. We decided that If we took the table, a chair and a nightstand out, we could move the bed over far enough to not only be able to use the door, but also use the connecting door. He also offered to move the bed over, but we decided that it wasn't necissary. We even had room to park DS's chair by the TV amoir. Within 10 minutes 3 other teams of people showed up at the door to offer assistance. The magic was back!

Next: Our Vacaton officially begins.

 

[PaMom001]

Great report. I would've been a little tense by the time I hit the room, too.

 

[Mouse's Shadow]

Hi D,L & K's Mom,

Thanks for tuning in. We were very lucky. We had no problems getting him on or off the plane on our return trip either. We did have a glitch, however, it didn't involve Delta. You'll just have to wait to hear about it.

 

[SueM in MN]

Are you ready for the magical glitch?Here it comes! The nice CM hands me a map with our room numbers on it. It's all circled and everything. I rejoin the crew in the rotunda, we go out the backdoors and we're stopped short. There is no wheelchair ramp. The whole central building wraps around the marina. I walk down the steps to see if I can see which of the 20 doors (ok, a small exaggeration, but not by much) on the back of this building is accessible. But those darn Disney landscapers are so clever, they are all hidden from site.

I know that door. The first time we stayed at POR, it really surprised us and it took us some time to figure out where there was a door we could use too.

The one thing to remember about WDW is that if there are stairs, there is usually a ramp somewhere quite close by.

Can hardly wait for the next installment.

 

[Mouse's Shadow]

We got settled into our rooms and then couldn't wait to get something to eat. The TSA had allowed me to take a can of Ensure through security. The boxes I had shipped had arrived at the hotel, but they weren't in the room yet, so I was glad to have something to put in Jared's stomach.

We went to the foodcourt at POR. Our experience with the tables were pretty standard to what we experienced all week. Jared is 6'2" and has a Quickie TS chair with a tiltback feature. His tops of his knees are about 29" off the floor. I don't recall any restaurant with tables which would allow his legs to fit under. I don't know how others have handled this situation. It wasn't a big deal for us because he doesn't eat; so we were able to position him sideways to the table. I have never read any comments about table height on the DIS before, but it would be interesting to know how others handled it.

We then found our way to the bus stop for our first encounter with transportation. The first bus that we road, the steps unfolded into a lift. The only trouble with this design is that it makes for a three foot step up for whoever is putting the wheelchair (WC)on board. Again we had no problem, but if a wheelchair user is being accompanied by someone with slight mobility restrictions, I can see where it could be difficult. We arrived at the MK around 7 pm. We headed straight for JC. I figured that would be a tame first attempt. The lines weren't long and there was only one other WC user infront of us, and he was able to transfer. The next boat that pulled up was accessible, and it would be the first of many times that I would marvel at Disney's ingenuity. The lift rose up spun 90 degrees, then unfolded a lift to the side of the boat. So we pulled Jared on backwards, they spun the lift then spun to face him forward in the boat and then lowered him down. It was cool. It was dark and we had a very funny captain. It was a wonderful introduction to our week.

Next we tried POC. This is were it would really help to have a more comprehensive guide to what transfers are like. There are some very narrow turns in the line. We discovered that this is a ride that you must be able to step up on the side then down into the boat. DS can not make that kind of transfer. If you want to practice a home. I would say that a good way to gauge if it is a transfer that you can make, put a step beside the bathtube. Step up then step down into the tube. DH lifed DS into the boat. I'm glad we were able to do it one time, but it was too hard on DH to try another attempt. The bright side is that DS was able to see Captain Jack at least one time through. The POC movies are some of DS's favorites

Then we headed to TTRUNM. It was my DMIL request. She had been to MK several times, but never had the tiki bird experience. I love the Tiki birds, plus I had been playing the song for DS for weeks. He did the happy dance through the entire show.

Afterwards, everyone was showing signs of fatique. It was time to make our way back to the hotel. Spectromagic was going on, so we made our way through the stores inorder to avoid the crowded sidewalks. It worked great. We got to the top of Main Street about the time the parade was ending. We called it a night.

It might be a few days before I make it back. Have to drop the old computer off for repairs.

 

[MarieS]

Thanks for posting! Can't wait for the next installment!
Both of my boys use wheelchairs so I am always looking for hints on how others handle travel and the parks. Glad to hear you were able to take the can of formula on the plane. I plan on shipping our stuff down, but wanted to have something with me for travel day.

Marie

 

[Karalynn]

Lovin the TR!!

 

[SueM in MN]

Jared is 6'2" and has a Quickie TS chair with a tiltback feature. His tops of his knees are about 29" off the floor. I don't recall any restaurant with tables which would allow his legs to fit under. I don't know how others have handled this situation. It wasn't a big deal for us because he doesn't eat; so we were able to position him sideways to the table. I have never read any comments about table height on the DIS before, but it would be interesting to know how others handled it.

It would be nice if they had some adjustable height tables, but I have never seen those outside of schools. I know at the hospital where I work, we have some tables that are considered 'wheelchair accessible height'. The problem with those tables, is that they are too high for other people.
We have noticed the table heights vary a lot. Some were high enough to fit DD's armrests under the table (more than 28 inches). Some were barely high enough to get her knees under the table (about 26 inches). The other thing we noticed was that some tables had legs or pedestals that prevented her wheelchair to go under all the way.

The first bus that we road, the steps unfolded into a lift. The only trouble with this design is that it makes for a three foot step up for whoever is putting the wheelchair (WC)on board. Again we had no problem, but if a wheelchair user is being accompanied by someone with slight mobility restrictions, I can see where it could be difficult.

I'm not quite sure what you mean here.
When we put DD's wheelchair on this kind of bus, DH usually goes on the lift with her wheelchair, so he walks right onto the flat-to-the ground lift.
I can see that there might not be room for someone to stand on the lift with a larger wheelchair, but I'm not sure how that makes a 3 foot step up. Please explain a bit more.

Luckily, the buses with lifts are the older buses that are being phased out. There are more of the ramp buses and those are the kind that the older buses are being replaced with.