question for parents of teen- or older ASD kids

[ireland_nicole]

OK, so I asked a similar question a while ago, but not exactly, so hopefully I can get a "pass" and ask this one too. We do WDW yearly, but this will be the first trip w/ just DD (and my mom) but not the rest of the family.

DD has finally grown out of her jogging stroller.

We have narrowed our "transport" options to two.
1. Purchase an lightweight stroller/wheelchair that will fit her through the current puberty growth spurt (probably to adulthood if necessary)

2. Manage without it, taking frequent breaks prn

We use the jogging stroller during our trips, and for long day trips outside (she will have a seizure if she gets too overheated or overtired.) - although we have been reducing significantly how often we use it. But I'm of two minds about it. On the one hand, she really likes having a stroller at WDW, it's a safe place, a nest, a "decompression zone"- plus she can tucker out. BUT, she's getting older and although a lot of things are "easier" the way we've learned to do them, it's not always best for her in the long run. i.e. we could tie her shoes faster, but it's certainly better for her to have the independence to be able to do them. We've really been focusing this year on trying to develop and encourage executive functioning skills. I don't want to push her beyond what she can do, but I'm willing to push her beyond what she wants to do to help her achieve her maximum potential. Part of me says, Disney is more of everything- size, stimulation, etc. Part of me says, this is an opportunity to prove to herself and to you that she can do more. I wonder if she'll still be using it in 4 years time at 15... If she NEEDS it, then I will make sure she has it; but I don't want to encourage dependence on something for the sake of ease now. I hope to be able to help her develop the independent skills of determining when it's time to take a break, get under shade, hydrate, etc. I won't always be there 100% of every day of her life. But she's not just going to do that naturally. I think I'm leaning toward trying without it...but I just don't want to set her up to fail.

WDYT?

 

[clanmcculloch]

That's a hard one. If it was just a matter of meltdowns if she gets overtired I'd say plan for shorter days and schedule the touring plans with her needs in mind, but that's not it. The seizures are what makes me think twice about doing away with any kind of transport device. If she's still willing to sit in a stroller, maybe renting a special needs stroller that can hold higher weights would be something to consider? Maybe you can start off using it more to carry things and she can hop in when she needs to. It could be a good test for just how much you really need it. I'd ask for the stroller as a wheelchair tag just in case and then see if I could get away with not using it (better to have it and not need it than to need it and not have it).

I really do understand that difficult balance between helping them and letting them grow. What's weird for us is that I'm usually the one fighting with our school to let DD13 learn to become more independent because they know it's easier to just do things for her so they frequently do which IMO stunts her grown towards becoming a fully independant person.

Regarding WDW I'm nervous about trying without our GAC even though we don't use it often. I just can't see trying things like the TSM dash with her. In February we tried the Soarin' dash and it was horrible; we narrowly avoided a meltdown but it was close (I couldn't believe how much people were literally pushing and stepping on others; it was our worst RD experience ever). If we didn't have the GAC as a backup, no way could she have handled it. We're trying to use it less and less but there are still some scenarios where we can't do without it. We went back to staying behind the RD crowds and using the GAC rather than trying to make RD work like everybody else. Maybe we'll try again in a year or so to see if she can cope better.

 

[bookwormde]

I would get the new stroller, but try to give her self determination as to when she want or needs to use it. If she develops skills to not need it is is a small price to pay for that progress.

boowkormde

 

[ireland_nicole]

Thanks guys, I appreciate the input, and we're seriously considering it- I don't think renting would be the best wayto go because DH is taking her to Ireland this summer to visit his family, so we'd use it for both if we had it- it's just the absolute cheapest I've been able to find one that will work for a while is around 900- that's a lot of mickey bars, KWIM?

Anyway, I know most of use use strollers for our under10 ASD kiddos- but what do the rest of you older ASD parents do- walk, wheelchair, etc?

 

[Reddy]

My 15 year old has siezures too - I didn't even think about a stroller for him
He did fine - I did some checking before we go to see how Disney would handle a siezure, as long as you or someone else is with them - they won't load them up & take to the ER (if she was by herself that is what would happen)
All of the parks, have EMT there on site. if she needed to be moved they would bring a strechter & use it not your stroller.

I would do without - like you point out, when will you stop if not now - do you want her using a stroller when she is 25?? it is easier for kids to adjust than adults

I would plan out some of the relaxing rides/shows for let's go here when she starts to meltdown (maybe go look at the wishing well??)

 

[mickey&minniealways]

I have siezures myself as do 2 of my 3 kids. The youngest who will turn 16 right before our trip and our oldest who is 24. DS24 is considered a low functioning adult. I basically have a permanent argumentative 16 yr old. Most people just find him annoying. He is very well controlled now with meds. We have had some breakthrough siezures the last year or so with DD. The best thing to do is write down everything when there is a siezure. You will need this for after the trip also. Time of day, how long. Tired, dehyrated, stressed. Everything. Look at a map of the park ahead of time. Let you child help plan what rides/attractions they want to go on along with alternates if lines or other things interfere. Mark where first aid stations or other places to take a break are also in relation to the attractions you plan on seeing are. Let your child take ownership of where things are. You know your childs warning sign but do they know them themselves. As they get older this self monitoring can be very important. Don't forget that hormones can triger a siezure especialy during adolecence.DS 24 has been going to Disney since he was just over a year old. If I can help as the parent of 2 kids that have different issues let me know. Even during the difficult times there is alway a way to lend a hand even if it is to just listen.

 

[ireland_nicole]

Thanks guys- she's working so hard- I guess what I really want is a handbook or crystal ball- but those are in pretty short supply, especially for complex kiddos. I hadn't even thought of the whOle hormones potentially triggering seizures thing- now I'm really second guessing letting DH take the kids alone this summer- ugh, can someone stop this ride for a minute? I think I'd like to get off for a bit... It feels like it gets more complicated, not less... It really helps though to hear from ya and realize that we're not alone

 

[brenalexacamp]

I don't know- I'm torn too- I have a child- he'll be 18 when we go in May. I have always taken a stroller-then a jogger, then a special needs stroller and finally a wheelchair. Although he doesn't always need it, it's nice to have. he can sit while we wait. It's hot there! He has a comfy place to sit while we wait for the parades. we are commandos also- He would never be able to keep up. He can enjoy it so much more!
This trip we are going to the beach, renting a car- then doing days at the Beach Club- I figure one day at MK, MGM, Epcot- now I have to get a car big enough to accomadate a wheelchair-more money.
I am thinking of squishing him into his old convaid and he'll be forced to be a little more mobile.
It is what it is- we never take a chair anywhere else- just to Disney- . I do get him a pass. We don't always use it- it's there if he needs it.

 

[dntd]

I would see if you can get her a chair covered by insurance. As she has other problems it shouldn't be that hard. I would suggest a light weight chair, we love our convaid. http://www.convaid.com/ I would talk to your dr before you shell out any money.

 

[brat]

We are not bringing one for Foster son but we do have DHs manual(his back-up chair in case his power chair has issues) FS is not small enough for my spare.I do have a pull-out seat on the back of my power chair but will not use it at parks(rules about riders and he is bigger than really fits)

I do not know how fast you need it but if insurance will not cover look at ebay ect.

We have traded with other SN parents, youngest DD uses one that a friends son used and he is useing my DSs outgrown chair.Someone on community posted about a SNs stroller cheap on craigslist.