HELP! Getting really nervous...

[MyFourTreasures]

I have been reading the threads on here for a couple of weeks trying to get prepared for our trip that is coming up in 12 days. I am starting to get really nervous though. It's the first time that our newly adopted daughter is joining us and she is in a wheelchair, and that's the part that I am freaking out about.

She is our second adopted special needs child, and our first is in a puch chair that we can fold up like a stroller to get on transportation. However, our china girl is non-ambulatory, so she will be in her ti-lite all week. I keep reading about where the straps will go on the buses, and special bars on the chairs where the drivers can tie her down. I have NO IDEA what you guys are talking about. The best I have found by googling, is that there are extra peices you need on your chair to use in a transport situation????WHAT???

I am freaking out because we are leaving in 12 days and as far as I know, there aren't any extra pieces that anyone explained to me when we got the chair that are to be used for tying down.

PLEASE, someone help me. Somebody tell me that we are going to be able to use her chair on Disney transportation. Maybe she already has this "bar" and I just don't know about it?? Can someone tell me what I'm supposed to be looking at?

Please....thank you.

 

[HowdyHeidi]

Do you happen to have the invoice from when you got her chair? Does it say anything about a "transport option" or "tie downs"?

Have you googled her type of chair and looked to see if they had a picture of where to tie down the chair?

It is good that you are asking because the bus drivers see all kinds of chairs and may not know how to tie hers down. One driver tied down my sons completely wrong, and I then showed my husband how to do it himself and that is much better. If we go again, I will take the moderators idea and attach colored tape to the tie down spots so the bus drivers know where to attach the ropes....

In any event, you will not need to tie it down on the monorail or ferry, if you will be using those...

 

[LilyWDW]

http://www.tilite.com/assets/pdf/TIE%20DOWN_SUPP_RevC_12-10.pdf

This is the tie down supplement for TiLite. You should read this and, if you have any other questions, you should call the company.

 

[Mary976]

A couple things come to mind. First, some wheelchairs do have an extra tie down or transport option. If you want to see an example, here's one http://www.colourswheelchair.com/idx_accessories.htm (it's the small box in the upper right). Anyway, I've seen the tie down option mostly on pediatric chairs...which makes sense if you're going back and forth to school on a bus.

That being said, a lot of chairs don't have any special extras for transport. The key thing that in order to safely ride in a wheelchair on a moving vehicle, it needs to be an actual wheelchair (not a stroller that you're just using as a wheelchair) AND you need to tie down to non removable pieces.

So, if your DD's chair has removable or swing away leg rests (for example), you DO NOT want to attach a tie down strap there.

Oh and in addition to bus drivers, there are a couple rides that have tie downs and you have to watch that they do those correctly as well. I think it might just be Killamanjaro Safaris and possibly Toy Story Mania.

Hope that helps,
Mary

 

[MyFourTreasures]

Thank you for the responses. I pulled her chair out of the car tonight to see if we had those brackets, and we definitely do not. I am going to call our rep on Monday to find out:
1. Wht the heck they sold me a wheelchair for a school age child that doesn't have transport brackets.
2. If they can install them before we leave on Thanksgiving day.

I doubt that we will be able to get them before we leave, but we will just do out best once we get on the buses. Her Ti-lite is the Aero Z, which has the rigid frame and there is a bar that runs across the bottom, I wonder if that is a good place for the tie down? I will do some googling to look for some videos perhaps.

I'm just nervous that we are going to cause such a scene getting on and off the bus and then I'm the stupid mom who doesn't even know how to use her daughter's wheelchair. Hopefully everyone will be nice and patient with us!

 

[WheeledTraveler]

I don't know anyone who uses a manual chair who has the manufacturer's tie-downs. i have a TiLite chair and I don't think they were even an option back when I got my chair (I have a TR purchased in 2004/2005ish). I'm not sure I like the ones they offer anyway since they're just bolt-on and not part of the frame.

I'll see if I can figure out how to show you where I have people tie down my chair and take pictures. I use the rigid bar under the seat and then either the bit of the frame that comes down above the caster forks (not the forks themselves) or the bit that comes down by my footplate (I have a single footplate that's part of the frame).

Personally I don't think companies should offer wheelchairs that aren't approved for transit point blank (technically my powerchair isn't either, but there isn't even an option to add the "transit pack" onto my powerchair), but I assume it's a funding thing that they don't since insurance generally only covers wheelchairs for use in home and doesn't care if they actually do anything in the outside world.

 

[LilyWDW]

Thank you for the responses. I pulled her chair out of the car tonight to see if we had those brackets, and we definitely do not. I am going to call our rep on Monday to find out:
1. Wht the heck they sold me a wheelchair for a school age child that doesn't have transport brackets.
2. If they can install them before we leave on Thanksgiving day.

I doubt that we will be able to get them before we leave, but we will just do out best once we get on the buses. Her Ti-lite is the Aero Z, which has the rigid frame and there is a bar that runs across the bottom, I wonder if that is a good place for the tie down? I will do some googling to look for some videos perhaps.

I'm just nervous that we are going to cause such a scene getting on and off the bus and then I'm the stupid mom who doesn't even know how to use her daughter's wheelchair. Hopefully everyone will be nice and patient with us!

Honestly, I would never use any part of the chair that isn't made to be a tie down to tie it down on transportation. For one, it wouldn't be safe. For another, if you did that and it damaged the chair you would be out of luck because you went against the manufacturers requirements.

It seems that TiLite offers the option for their wheelchairs.

 

[peemagg]

It is a offered option on Tilite's chairs. I know the one that I have ordered (ZRA series 2) is ordered with the tie downs. I am supposed to get the chair any day now and when I do, I will try and post pictures of what they look like and where they are.

 

[a1tinkfans]

OP:
I just wanted to wish you all a MAGICAL vacation and hope that your trip is free of any issues with the chair and transportation. Regardless what others may think about the time you need to keep your child safe, take it in stride...you'lll never see them again and who really cares what anyone else thinks anyway.
Heres hoping to a SMOOTH vacation with lots of laughter and plenty of memories to share for years to come!
Hope you'll report back to share with us!!

 

[Zeora]

Hi OP - Don't panic! I just got back from WDW yesterday and my wheelchair doesn't have specific tie-downs either, and it was perfectly fine. So while obviously they'd be a very good thing to have in the long run, if you can't get them by the trip I'd say the chances are still good that things will be okay. The bus drivers mostly know what to do, so don't worry about other passengers and what they might think. (Not that you should necessarily worry about what they might think anyway, right?)

Here's the thing - the tie-downs on the buses are basically seatbelt straps with big hooks on the end. There are four of them, two for the front and two for the back. The hooks go around spots on the wheelchair frame, then they winch the straps tight so the chair can't go flying if the bus needs to make a sharp turn. What you need to know is where those hooks can go safely, that's all. The most important thing is that they attach to a solid portion of the frame, not a removeable part - that was the only issue I had, as the drivers tended to go for the (removeable) footrests on my chair if I didn't point out the more solid frame corners near the front instead. Then they put a seatbelt around you so not only will the chair stay put, you will too. It's usually a regular lap belt but occasionally I had a driver who wanted to add a shoulder belt as well.

I hope this description of the process helps give you an idea of what's involved, and that your trip goes fabulously!

 

[MyFourTreasures]

Wow, thank you everyone for the responses. I feel a little better after hearing about the process of the actual tie down. And I would LOVE to see pictures from those that offered.

I am learning so much about the world of wheelchairs through this journey with our china girl. I wish I had known as much as I do now when we ordered the chair. I feel like I let the rep just tell me what we were going to get. OH well, I am learning!

Thanks again, everyone. I will most definitely update after the trip. I hope our transportation is VERY uneventful.

11 days!!!!!

 

[WheelieBigDisFan]

Hi there,
First of all take a deep breath. While you may not have the tie downs on your DD's wheelchair now (she may be your "China Girl" but she is also your DD, so feel free to use any term that you are comfortable with. In public if you introduce her as your China Girl, feel free to use that here too...but if you introduce her as your DD, your newly adopted DD from China, etc you are welcome to use that here too. Again, whatever you feel most comfortable with) even if you did they would not do what you expect them to. The only models of wheelchair TiLite approves the tie down system for occupied use with is the YG/YGS and ZR/A Series 2, all other models (while a tie down system can physically be attached to the tubing) will not be covered in the event of a collision.
Basically, wheelchair manufactures like to relinquish all liability in the case of a catastrophic failure that could be out of their hands, so they will sell wheelchair "tie downs" but they are only to be used to secure an UNOCCUPIED chair in a moving vehicle, not a person IN a chair in a moving vehicle. The reason is that the crash testing with a wheelchair is VERY expensive, and since they don't (and won't) put all of the wheelchairs through this crash testing to make sure that the tie down brackets are safe for occupied use in a manual wheelchair, they make certain to say that it is for unoccupied use only. They expect that when you get into a vehicle, you (or the wheelchair user) transfer out of the wheelchair and into a vehicle seat that was designed for the purpose of securing passengers and keeping them safe in the event of a collision. This does not however address the fact that many wheelchair users have unique positioning needs and may not be able to safely nor comfortably sit in an unmodified vehicle seat made for the AB population.

With that said, I myself have a TiLite AeroZ and only allow the drivers of the tram or TSM(M) (Toy Story (Midway) Mania)[Depending on park...CA or FL] attach the tie down brackets to two locations on my chair. I have taken pictures of where I WILL allow them to tie down my chair, and where I will NOT allow them to tie down my chair.

Will:
The back cross bar that rigidifies the backrest.

The under seat cross bar rigidizer.

Will NOT:
The footrest tube (there is a chance of slipping and the footrest coming off if the screws are not properly fastened).

The caster fork or caster fork housing since these are adjustable pieces and if they get tweaked the chair could not function properly (most notably it could cause caster flutter at low or high speeds which could cause the chair to shake and may even eject the rider depending on speed).

The backrest release bar that allows the backrest to fold down since it is TINY and easily bendable, plus if bent and/or broken you may be unable to fold the backrest, or would have to fold the backrest by alternate means.

The camber bar or axle bar since if this is bent or broken it could cause the wheels to be out of line, lined up improperly or cause catastrophic failure of the wheelchair (we definitely need our wheels to stay ON our chair, thank you very much!). I had a tram operator secure the tie down to this tube one time over a black cable that is in the picture. That black cable is for my brakes (they are called D's Locks and lock at the hub of the wheel instead of at the tire, so they are A LOT easier on the hands and wrists to lock, but even if you have a completely flat tire, the wheel will still lock since it is locked at the hub). Anyways, since the tie down went over my axle bar and over that black wire, when I got un hooked at the end of the ride to Disneyland I could not unlock my brakes...my right wheel would move but the left wouldn't. Come to find out instead of hooking it where I told him was safe (the backrest rigidizer bar) he hooked it on the axle tube and it broke one of the wires to my brakes, so I had to use a park loaner chair for the day so I could have brakes!

With all that said (and photographed) I would definitely use the idea of taping out where you would like them to hook down your DD's wheelchair. The risk of something happening on Disney Transportation is VERY slim, and if anything did happen it would be at low speeds.
I hope everything goes well and you and your recently extended family has a great first trip to Disney as a FAMILY!!! Definitely enjoy your vacation and feel free to ask me any questions you may have.

Mandy,
T10 Incomplete Paraplegic

 

[MyFourTreasures]

Thanks, Mandy! That is a huge help. I am going to get DD's chair out and post some photos after I place the tape and you all can tell me if I've got it right. Your first picture didn't come through, but I know what bar you are talking about.

Oh, and DD's chair is red too! But her's is the ruby red.

And, for anyone wondering, we don't refer to her as our china girl at home. She is just our daughter, but I think I mentioned that the first time so folks would understand why I don't know a ton about her chair or about using it on public transportation. She just came home 10 months ago and was 6 at the time of adoption, so I didn't want to come across as a complete dummy. I'm definitely still learning!

Thanks again everyone. I will try to post pics today, but we are headed to the hospital to meet with surgeon, so I'm not positive that it will happen today. I also have to get some of the tape you guys are talking about. Suggestions, anyone? Are we talking about electrical tape, duct tape? Thanks.

 

[peemagg]

I use colored duct tape. I put hot pink on my scooter to show where it is safe for the tie-downs.

 

[WheelieBigDisFan]

MyFourTreasures,
I fixed the first photo for you so it works now. Also, I use electrical tape since it is not super sticky and hard to get off the chair.
To keep my chair scratch free I always have bicycle handlebar grip tape covering the down tubes (from the seat to the footrest) as you can see in my pictures, and then I cover that with electrical tape. I also covered the rigidifying cross bar on the backrest with electrical tape so that the black there did not chip over time (it has in the past) and stays new longer.

Any hardware store will have multiple colors of electrical tape, so you should be able to go in and find something that will stand out and that your daughter will like.

You are also "lucky" in the fact that your daughter is still young, so as she grows she will be eligible for a new chair faster than someone my age (24) who is done growing and expected to be in their current chair for 5+ years prior to getting a new chair. My current chair is no longer meeting my needs after just 3 years, and I am having a hard time fighting to get what I need. Luckily I have someone coming to the house today to see if I will be eligible for insurance to buy me a power wheelchair for use in home, but also at school where I will need it most because of hills and a recent inability to do pressure relief to prevent pressure sores. Since I broke my hand earlier in the year I can not do the 30 second push up that used to relieve all pressure off my sacrum and Iliums, so now I am having to lean forward as much as possible and side to side to change pressure and prevent sores, definitely NOT ideal. I hope that if I can get a power wheelchair I will qualify for tilt so the whole wheelchair tilts back to reduce that pressure from the bum, but will also help relax the spine for a few minutes.

You might already know this, but since your daughter is totally non ambulatory make sure that she is doing pressure relief every 15-30 minutes to prevent the risk of a pressure ulcer. Pressure ulcers could wind up needing surgery and have a hard time healing due to poor blood flow from the lack of use of our lower extremities.

I'm sure you are getting good at this since you have now adopted two special needs children, but you need to learn to be a good advocate for them. Don't just take the first decision that insurance throws along, because it is usually not what is necessary for the girls well being. If they deny something the first time, make sure to appeal it. Keep appealing it until they approve it, and if needed have her prescribing physician do a peer to peer review with the insurance company where they call the insurance and speak with a doctor there to get the necessary medical equipment, procedure, consultation, etc. If you EVER have ANY questions please feel free to send me a PM and I will do my best to help you.

Again, I hope you and your newly expanded family has a GREAT time at Disney World!

Mandy

 

[MyFourTreasures]

Hey all,
I have not fogotten about putting up some photos of DD's chair, I just haven't made it to the store for the tape yet. We found out on Monday that she does indeed need corrective surgery for a bone becuase the rod in it has migrated through the bone. Ugh! We are trying to buy some time and make it through the holidays before doing the surgery. As long as she is careful and the rod doesn't migrate further (like through the skin), we will be okay.

And DD2, who hasn't had a seizure in about 6 weeks had one yesterday.

So right now I am just praying that everyone is healthy enough to have a great trip next week!

I will get those pics up today hopefully!