Guest guest Posted July 8, 2007 Report Share Posted July 8, 2007 Jeanie- Do you have a wheelchair for her?? Aubrie can't handle lots of walking. We got a chair 2 years ago and it's been a big help. Sounds like MacKenzie's overload may be more than physical fatigue, but the chair can provide her an opportunity to sit and veg out while the boys continue to go, go, go. Aubrie is able to rock herself to comfort or even fall asleep in the chair if she really needs to. I know it's too late for you now, but the ideal situation would be if you had a babysitter coming with you to stay back at the hotel or sit in a quiet space at Disney with Mac while you and the boys keep going. Do you feel comfortable letting the boys go a bit on their own if you and Mac park yourselves somewhere that suits her and they visit the attractions nearby? Maybe a walkie talkie would make that work more comfortably. They'll spend an awful lot of time waiting in line - that is if she is not going on the same ride to get them the express route to the front. They have wheelchairs to borrow or rent at Disney. Maybe it would be a good time to try it. Just thinking out loud here. I know how frustrating this is for you and the boys. DJ and I are debating if we should bring an extra person on our trip. I think there could be times when Aubrie is on overload or over tired. It'd be nice to have my mom there to stay back with her. None of us will want to miss anything because she needs us to hang back. But she is getting much more independent, tolerant, and lasting longer. So maybe we don't need that. You can imagine how another adult can change the atmosphere of a family trip. The other option is taking 's girlfriend. She's a doll. And she'd know that there may be times when she'll have to " pay her way " by sitting back with Aubrie. But she won't really want to - and she's not able to tune in to Aubrie like Grandma can. And then there's the way an added teenager changes the flavor of the family trip. But I'm thankful that we have options. I am " decision-making-impaired " and DJ's just plain slow at making decisions - so we're struggling with what to do. The little fair was a blessing in disguise to get you thinking about this in advance. I hope you figure out a good solution so that you all have a good time. Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2007 Report Share Posted July 8, 2007 Jeanie, We have an EZ-Rider wheelchair for Dylan. It folds up like a stroller and it is what makes outings possible for our family and for MY BACK. He can walk independently, but he does not have the stamina for family outings without it. At school people were concerned he would grow lazy and just allow people to push him around. I didn't think so, and was proven right. His new caregiver experienced it this last week when he has been recovering from some " mystery " episodes. If he was tired he would ride, if he had energy he would push it. Motivation for independence is there, but so is the motivation for socialization and fun. His body just can't sustain it all. Maybe it would " bother " Mac to be in a chair, but maybe she would be relieved to be able to stay longer and have more fun if she didn't have to be navigating her body in the midst of the crowds that whole time. The doctor wrote a prescription. State insurance denied it. Then I appealed it with back up from articles by Dr. on balance, and other letters. What day are you going to Disneyland - if we're hanging at the hotel that day you can borrow our chair. > > > > > > > I'm wondering if anyone has advice concerning MacKenzie's inability to > participate in anything for long periods. We've had a little fair here for > the last few days and she's had a lot of trouble with it. We've done the > parade, a few rides and some short walks and she hasn't done well. She gets > very excited about the prospect of doing these things, but always wants to > go home shortly after arriving. I understand that it's probably an overload > of info that she has trouble processing, but it actually seems to get worse > as she gets older. I feel bad for the boys, it seems to them that MacKenzie > is always ending the fun. I'm also concerned about her ability to do Disney. > I'd love for her to get a great experience, but it seems like it's going to > be very limited. > > Jeanie Colp > mom to MacKenzie 9 CHARGE, Tyler 15 & Zachary 13 > Nova Scotia, Canada > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2007 Report Share Posted July 8, 2007 jeanie, we have a stroller for tim it's like a big jogging stroller --made for him and had we investigated more, we would have gotten a more structured one, but......we did an amusement park yesterday just tim, pat and I and he spent travel time in the carriage and made it all day ! he and pat had a blast on the roller coasters the bigger faster and wilder the better!! and on water slides etc too. he went by himslf--pat going first and then tim --but the stroller has been a life saver the other two use it occasionally too. but at disney we rented a wheel chair, not quite as cozy, but it worked. maria RE: overtired Jeanie- Do you have a wheelchair for her?? Aubrie can't handle lots of walking. We got a chair 2 years ago and it's been a big help. Sounds like MacKenzie's overload may be more than physical fatigue, but the chair can provide her an opportunity to sit and veg out while the boys continue to go, go, go. Aubrie is able to rock herself to comfort or even fall asleep in the chair if she really needs to. I know it's too late for you now, but the ideal situation would be if you had a babysitter coming with you to stay back at the hotel or sit in a quiet space at Disney with Mac while you and the boys keep going. Do you feel comfortable letting the boys go a bit on their own if you and Mac park yourselves somewhere that suits her and they visit the attractions nearby? Maybe a walkie talkie would make that work more comfortably. They'll spend an awful lot of time waiting in line - that is if she is not going on the same ride to get them the express route to the front. They have wheelchairs to borrow or rent at Disney. Maybe it would be a good time to try it. Just thinking out loud here. I know how frustrating this is for you and the boys. DJ and I are debating if we should bring an extra person on our trip. I think there could be times when Aubrie is on overload or over tired. It'd be nice to have my mom there to stay back with her. None of us will want to miss anything because she needs us to hang back. But she is getting much more independent, tolerant, and lasting longer. So maybe we don't need that. You can imagine how another adult can change the atmosphere of a family trip. The other option is taking 's girlfriend. She's a doll. And she'd know that there may be times when she'll have to " pay her way " by sitting back with Aubrie. But she won't really want to - and she's not able to tune in to Aubrie like Grandma can. And then there's the way an added teenager changes the flavor of the family trip. But I'm thankful that we have options. I am " decision-making-impaired " and DJ's just plain slow at making decisions - so we're struggling with what to do. The little fair was a blessing in disguise to get you thinking about this in advance. I hope you figure out a good solution so that you all have a good time. Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2007 Report Share Posted July 8, 2007 Jeanie, is 10 now and has always been like this. He looks forward to something and then once he arrives he is ready to go home, except for amusement parks and movies. So, I know it isn't only fatigue but still haven't figured out his way of thinking yet. I try to prepare him with a schedule of what we will be doing when we get there and what time we will be going home. He is better when I do that. Sometimes events are very open ended like going to someone's house. I break it up into for example, playing, eating dinner, having dessert, having presents then going home, this way he knows there is an end. He is also able to tell time now which is helping him. In the past he use to do that with things such as parades, carvivals, but now he is so focused on the rides and things he doesn't do that because he loves those things. It is all the things that he would like to do but really doesn't care too intently on. Or, he does it with things he just doesn't' really want to be doing. At Disney he got very tired. He did walk the whole time though. In the past I rented a stroller (they have larger ones). I also got the guest assistance pass which really made a huge difference. I do think for us it is a combination of the anxiety of becoming fatigued and also doing what he wants to be doing, not what the family needs to do. For those times I always use his reward system. He does something the family will be doing, and then he gets to go to a movie or blockbuster. That always works with him. I always have to prepare him, even if it is going to the grocery store. Hope this helps. Debbie Matasker overtired I'm wondering if anyone has advice concerning MacKenzie's inability to participate in anything for long periods. We've had a little fair here for the last few days and she's had a lot of trouble with it. We've done the parade, a few rides and some short walks and she hasn't done well. She gets very excited about the prospect of doing these things, but always wants to go home shortly after arriving. I understand that it's probably an overload of info that she has trouble processing, but it actually seems to get worse as she gets older. I feel bad for the boys, it seems to them that MacKenzie is always ending the fun. I'm also concerned about her ability to do Disney. I'd love for her to get a great experience, but it seems like it's going to be very limited. Jeanie Colp mom to MacKenzie 9 CHARGE, Tyler 15 & Zachary 13 Nova Scotia, Canada Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2007 Report Share Posted July 8, 2007 i a basicly in chair most of the time coz of tiredness and lack of balance it is best for me > > Jeanie, > > is 10 now and has always been like this. He looks forward to > something and then once he arrives he is ready to go home, except for > amusement parks and movies. So, I know it isn't only fatigue but still > haven't figured out his way of thinking yet. I try to prepare him with a > schedule of what we will be doing when we get there and what time we will > be > going home. He is better when I do that. Sometimes events are very open > ended like going to someone's house. I break it up into for example, > playing, eating dinner, having dessert, having presents then going home, > this way he knows there is an end. He is also able to tell time now which > is helping him. In the past he use to do that with things such as > parades, carvivals, but now he is so focused on the rides and things he > doesn't do that because he loves those things. It is all the things that > he > would like to do but really doesn't care too intently on. Or, he does it > with things he just doesn't' really want to be doing. > > At Disney he got very tired. He did walk the whole time though. In the > past I rented a stroller (they have larger ones). I also got the guest > assistance pass which really made a huge difference. > > I do think for us it is a combination of the anxiety of becoming fatigued > and also doing what he wants to be doing, not what the family needs to do. > For those times I always use his reward system. He does something the > family will be doing, and then he gets to go to a movie or blockbuster. > That always works with him. I always have to prepare him, even if it is > going to the grocery store. Hope this helps. > > Debbie Matasker > > overtired > > I'm wondering if anyone has advice concerning MacKenzie's inability to > participate in anything for long periods. We've had a little fair here for > the last few days and she's had a lot of trouble with it. We've done the > parade, a few rides and some short walks and she hasn't done well. She > gets > very excited about the prospect of doing these things, but always wants to > go home shortly after arriving. I understand that it's probably an > overload > of info that she has trouble processing, but it actually seems to get > worse > as she gets older. I feel bad for the boys, it seems to them that > MacKenzie > is always ending the fun. I'm also concerned about her ability to do > Disney. > I'd love for her to get a great experience, but it seems like it's going > to > be very limited. > > Jeanie Colp > mom to MacKenzie 9 CHARGE, Tyler 15 & Zachary 13 > Nova Scotia, Canada > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.