Need wheelchair ramp and tie down help

iVillage Member
Registered: 03-05-2004
Need wheelchair ramp and tie down help
8
Fri, 10-20-2006 - 2:00pm
I'm new to this board, we think my daughter Peyton has Angelman Syndrome. She is 2 1/2 and is in a wheelchair and doesn't walk or talk and we don't know if she ever will. I thought some of you here that are familiar with wheelchairs and all their accessories might be able to give me some expert opinions on what works best. These things are expensive and I want to make sure I get the right and most convenient stuff the first time around.
I have a Chevy Express 12 passenger van so I have to get a ramp that is about 8 or more feet long. I can't get a lift because of the expense and because I have to take out 2 bench seats and can't do that.
What have you used or bought and liked or didn't like as far as ramps and tie downs?
Thanks so much,
Jennifer

Jennifer

Ainsley 8, William 7, Peyton 6 *8p23.1 duplication syndrome*,  and Jackson 4. www.onever

Avatar for mt_happydaze
iVillage Member
Registered: 03-26-2003
Fri, 10-20-2006 - 8:48pm

Hi Jennifer,

My dd is 13 and uses a wheelchair. Here is what we have done over the years:

When she was your dd's age, we were still able to lift her out of her chair and place her in a carseat. She had a stroller/wheelchair that broke down and folded so it fit under the back van(Dodge Caravan)seat.

As she got bigger and our family grew, we got a bigger van (Chevy Express 12 pass., like you!). She went into a small wheelchair which was "light" enough for me to lift and it fit behind the back van seat. She went into a Gorilla carseat when she outgrew the regular one.

When she outgrew the little wheelchair and got her current one, I could no longer lift the wheelchair by myself, though I "think"(can't remember for sure)that it still fit in the back of the van. The Gorilla wasn't comfortable for her even though she still fit in it, so we started putting her in the seat next to the wall and propping her with pillows (probably not the safest situation). We didn't do that for long before looking for a van with a lift so that she'd be able to ride in her wheelchair.

We found a full size Dodge van that already had a lift in it and traded in our Chevy for it. The Dodge has a rear bench seat, 2 bucket seats in front of that, and then a big space for the wheelchair. So, including the wheelchair, it seats 8. We got it at a dealer that specializes in accessible vehicles so they were able to put in the bucket seats for us(it only had a bench in back). And they put nicer tie downs in it. Our tie downs are Q-straints, which are fairly simple to use.

If you do a ramp, where will you put the wheelchair? Are you having a seat removed? There are all different types of lifts, some in back and some on the side. Ours comes down from the side. There are some that stow under the van, taking up less room inside.

Sorry I can't help with ramps as we haven't done that. I do recommend the "Q-straint"tie downs.

Pam

iVillage Member
Registered: 03-05-2004
Fri, 10-20-2006 - 9:23pm
Thanks so much for your response. We are planning on taking out one of the bench seats and using that space for her wheelchair. Do you remember how much your daughter weighed when you started transporting her in her wheelchair and got the lift? Sometimes I feel like I'm just wimping out on her but she's 38 lbs of dead weight and 38" tall and it's hard to get her in and out of vehicles. I think our next vehicle will be the 15 passenger van so we can take out 2 bench seats and get a lift for her. I'm going to try and get a pre-equipped vehicle next time because it just gets too expensive to try and pay upfront for all of this crap after the fact. They have these new retractable tie downs that I think I will like. I think you just push the botton and then they pull out and hook on and then retract just like a seatbelt. They seem to be the most convenient. How does the Q-straint work?
I thought of putting a winch on the other side of the van so I could just hook her up and it would pull her up the ramps for me while I guide her. I mentioned it to my DH and he laughed. I asked him if he thought it was too Redneck of me and he said OOh no, a Redneck wouldn't waste a good winch on something like that. :o)
I guess one thing that's hard for me is that we have 4 children right now and they are 4,3,2 and almost 9 months. The 3 yr old and baby are foster boys and the other 2 are ours. We are planning on doing foster care for a while for younger kids and adopting the ones we can until we have about 6 total. Just going somewhere is quite the job so I'm looking for the quickest way about it.
Thanks again,
Jennifer

Jennifer

Ainsley 8, William 7, Peyton 6 *8p23.1 duplication syndrome*,  and Jackson 4. www.onever

Avatar for mt_happydaze
iVillage Member
Registered: 03-26-2003
Fri, 10-20-2006 - 10:05pm

LOL, you gave me a good laugh with the winch idea!! We come up with some pretty bizarre ideas here, too.

I know what you're saying about all this stuff being so expensive. That's why we were so relieved when we found our van with the lift already in it. Our insurance and her Medicaid would have helped, but it is just such a headache dealing with all that.

The retractable tie downs you're talking about sound like our Q-straints. You push a little button on them and you can pull them out or let them retract. You just pull them out, hook them on the chair and tighten them up (though I think they may have newer ones now that tighten themselves). Then you push the little button to release them so you can unhook. Very easy! The hard part is crawling around the chair to get all 4 hooked or unhooked--it would be much better to have more space back there. I am not a big person but it is tough for me to do it--usually my kids do it cause it's easier for them to do all that contorting. I think you are smart to get the biggest van you can so you won't have this problem. You're kids are all very young but maybe the 4 year old could learn to help with hooking her up? Mine are older, so can be very helpful with loading, hooking up and unloading their sister.

I'm not sure how much she weighed when we got the lift. Probably at least 60 lbs.? You are not wimping out--it's best to not lift anymore than you have to because you don't want to injure yourself. My dd weighs over 80lbs. now (she hasn't been weighed in a couple years and was 80 last time). I only lift her a couple times a day by myself.

Does your dd wear diapers? If she does, you also want space in the van to change her when she gets too big to change in the restrooms. Though I have used fitting rooms!

Our 2 youngest came to us through foster care, too!

Pam

iVillage Member
Registered: 03-05-2004
Fri, 10-20-2006 - 10:35pm
Thanks again for the info. I wish we had better insurance. We have Medica and they won't help with anything but the wheelchair and we had to pay 20% of that. We have to pay for the vehicle and all the extras because we make too much to qualify for any help.
Since you mentioned diapers I was wondering what you did for diapers when your daughter couldn't wear regular ones anymore? We are just about to that point with Peyton because she keeps leaking out. I bought a package of small Depends that are adjustable but we haven't tried them yet. I have really taken advantage of those extra seats for changing her because I'm so afraid of the little baby stations falling off the wall, plus it scares her. The fitting rooms are a great idea! I'll have to put a can of air freshener in my bag to spray for the next poor person :o)
I'm starting to think that maybe what I need to get is another bigger double stroller that will hold her and the baby. That way I can get her and the baby around because it's also really hard to push a stroller and wheelchair at the same time. That way Peyton can use her chair for school and when we go to a restaurant but the stroller other times.
I was wondering what your daughter has, if I may ask? We think me daughter has Angelman Syndrome but no one (not even Mayo) knows for sure.
Thanks again,
Jennifer

Jennifer

Ainsley 8, William 7, Peyton 6 *8p23.1 duplication syndrome*,  and Jackson 4. www.onever

Avatar for mt_happydaze
iVillage Member
Registered: 03-26-2003
Fri, 10-20-2006 - 11:06pm

Yeah, our insurance can be a real pain in the butt. We've been lucky so far in that between her Medicaid and our private insurance, we haven't had to pay for any equipment yet.

Sydney outgrew the regular baby diapers long ago. We get her diapers from HDIS--you can check them out online. They have all kinds of products for kids and adults. We chose the Tranquility brand--it fastens on like a diaper (not a pull-up). She started out in jr. size and is now in the Mediums. They are meant to hold a lot but she still leaks quite often so I put either a feminine pad or a pad meant for urinary leakage in her diaper. That way it's less likely to leak--I usually do that when we are travelling or out, and I know I may not be able to change her as frequently as at home. Her diapers are delivered to us every month by UPS and they are paid for by the state (we're in NC). I don't know if it's Medicaid that pays or how it works--her case manager takes care of all that. I don't think diapers are covered in all states.

Boy, if your little girl can sit in a stroller, I'd do that!! So much easier than a wheelchair. I can imagine it would be hard to push the stroller and the wheelchair--how do you manage grocery shopping?

I have heard of Angelmann syndrome but know nothing about it. My dd was born in severe distress--she wasn't getting enough oxygen at some point during the end of my pregnancy. She suffered severe brain damage which caused cerebral palsy, severe/profound mental retardation and seizure disorder(under control). She is non-verbal, non-ambulatory, requires total care. But she is such a blessing and so funny and cute! Lots of personality, great sense of humor and everyone who knows her loves her and thinks she is pretty darn smart. I'll bet your dd brings so much joy to your family, too.

Nice talking with you! Pam

iVillage Member
Registered: 03-05-2004
Sun, 10-22-2006 - 9:57pm
Thanks again for the info. I'll have to check into those adult diapers and see if it's something my insurance pays for. We do most of our grocery shopping at Sam's Club. My Mom and I go about once a month and stock up. We take out a seat and load my van to the top :o)
I actually have decided that maybe I'd be better off just getting another, larger double stroller so that I can transport her and the baby at the same time. Especially since it's almost Winter and that would be much easier to get her around. I just have to find one that will fit her and the baby. There are only about 12 lbs. difference between the two of them so maybe even a side by side might work.
Peyton is like an 8 month old baby in every way. She doesn't talk or walk and just learned how to crawl this Summer. She seems a lot like your daughter in personality though. She is the most beautiful little girl with long curly hair and lashes. She smiles all the time and is just a joy to have around. The kids can have a hard time with her when she bites or pulls hair because that's what 8 month olds do sometimes but for her it's at a bigger scale because she's a lot stronger. Other than that all kids just love her because she loves them.
Thanks again,
Jennifer

Jennifer

Ainsley 8, William 7, Peyton 6 *8p23.1 duplication syndrome*,  and Jackson 4. www.onever

iVillage Member
Registered: 06-09-2006
Sun, 10-22-2006 - 11:06pm

Hi Jennefer
Moise is nearly six and up to this point we've been putting him in a regular carseat. We drive a full size conversion van so I am able to lift the wheelchair into the back. It's heavy and he's awkward to get into the van but I manage. We know that soon we will have to make some adjustments as I just don't have the physical strength to lift him much longer. He is going to be having orthopedic surgery on Nov 9 in hopes of giving better mobility and ambulation (he walks wtih a walker now). I'm trying to hold out on making our current vehicle more handicap accessible until we know how successful the surgery is.

I also have 5 children and while they are older now (14,12,10,8,5) I well remember the chore of taking them all out when they were little. I read the part about your getting a double stroller, and for what it's worth we did not like the side by side. The kids tended to fight more and with your dd hair pulling this could be a problem. Most of all we often found that it was to wide to fit into aisles and such. We also had a front/back double stroller and liked it alot better.

By the way, don't know if I mentioned it before or not but Moise came to us through adoption. He was born in Haiti and came here at 4 mos. He is beautiful with long thick lashes that most s would die for and a smile that melts everyone's heart.

Hope you find a solution

Blest

iVillage Member
Registered: 03-05-2004
Sun, 10-22-2006 - 11:32pm
Thanks for your reply. I think I just responded to a question you had too, about your son getting his clothes off :o)
I was wondering how much your son weighs? Peyton is about 38 lbs now and I'm wondering if I'm just giving up too soon on still using the carseat and stroller thing. I was thinking that a wheelchair would be SO much easier but it's not, especially with the baby now.
I was looking at some of the side by side strollers with the fabric divider between the kids. Someone had mentioned in a review of one that she liked that the kids couldn't touch each other with the 5 point harness on and the divider. I'm going to go to Babies R Us this week with the kids and try some out. I usually boff at the cost of strollers but hey, $200 is nothing now compared to $2000 for ramps and stuff :o)
Thanks again,
Jennifer

Jennifer

Ainsley 8, William 7, Peyton 6 *8p23.1 duplication syndrome*,  and Jackson 4. www.onever