Asd *&* cll

[Esky]

Don't really know what I am hoping for, just reassurance and any advice really.

DH and I got married in WDW in 2010, our son, who had ASD was nearly 4, had a blast. We had a struggly first few days, discovered the GAC, and turned our stay around.

He was 5 when we returned, we got a GAC, and our stay was magical.

When we go back, he will be 10, and the GAC is now the DAS? Will it be as good for him?

The other thing is, that, DH now has CLL, and is going to struggle much more. ANy tips for him?

Oh, and we also have an additional will be 3 yr old...

Just after top hints and tips to make this, which will probably be our last big family holiday ever , the most magical it can possibly be.

 

[lanejudy]

If you haven't yet, please check out the WDW Disability Access Service Card sticky near the top of this forum. No need to read the full thread, just the first post has all the details.

DAS is need-based, not diagnosis-based. You will have to think about how either your son or your husband are impacted by waiting in a standard queue environment. I'm drawing a blank on what you mean by "CLL" but again the diagnosis doesn't matter as much as the need. If his need is stamina or mobility, the suggested accommodation will be to use an ECV or wheelchair or other mobility device. If you have 2 people in your party who both qualify for the DAS, your party will be split across the 2 cards (in your case, each card will be good for 2 guests -- the one pictured plus one companion).

The basic difference in how the DAS is used vs the GAC is that you will get a return time noted on the card. You may then do what you choose during that wait time. You may return at any time AFTER the time noted on the card, but you can only have 1 return time active. When used with FP+ it has been very successful for many people.

Check out the DAS sticky and if you have more specific questions, let us know. Enjoy your vacation!

 

[Esky]

Thank you, yeah, I had a look, and that still works for us (DS can't stand still in lines with loads of people for ages, his sensory issues kick in - so waiting away from the ride and returning is still helpful, and getting a time helps him plan)

CLL is Chronic Lymphocytic Leukaemia. His biggest problems are likely to be fatigue, although he is also seriously immunocompromised.

 

[Coonhound]

If he will get hot you could look I to using a cooling vest. What I would do is get a wheelchair or a stroller-as-a-wheelchair because then he can sit down whenever he's tired and save his energy.

 

[Aladora]

Thank you, yeah, I had a look, and that still works for us (DS can't stand still in lines with loads of people for ages, his sensory issues kick in - so waiting away from the ride and returning is still helpful, and getting a time helps him plan)

CLL is Chronic Lymphocytic Leukaemia. His biggest problems are likely to be fatigue, although he is also seriously immunocompromised.

For your DH, I would think that a wheelchair or ecv is his best route. It would help with the fatigue and also keep him a bit away from others to help with his immunity issues.

Have you spoken to his onc to see if he/she has any thoughts on a WDW trip?

 

[Esky]

His onc currently says as long as he feels well enough, that the time with his children is actually beneficial. Although, he needs to pace himself, and rest well, plan days around rests etc.

We are hoping, as this is currently a slow version, tht this advice will hold true when we go, if the situation deteriorates, we would look at borrowing to make the trip sooner, to make the memories with his children.

Always good to get ideas and tips though.

 

[ladyjubilee]

My suggestion is a bit of a variation. Depending on his size and functioning level I suggest a stroller instead of a wheelchair. Wheelchairs generally elevate and have the rider more exposed than a stroller which lowers and cocoons. A stroller can be more of a retreat. Maybe his OT could make a recommendation.

 

[Aladora]

His onc currently says as long as he feels well enough, that the time with his children is actually beneficial. Although, he needs to pace himself, and rest well, plan days around rests etc.

What number chemo is he going to be on?

I remember that the effects of chemo were cumulative, that by the last few treatments I was way more tired than the first few. It also seemed to take me longer to bounce back after each chemo cycle.

My personal thoughts are that you should absolutely try and do this if your husband feels he can handle it but know that his energy level is going to be lower than ever he expects.

Good luck and I hope you have a wonderful trip.

 

[Esky]

lady jubilee, thank you, luckily, my son won't need a wheelchair or a stroller, but, my husband may well need a wheelchair, I think he will cope better wit that than a stroller.

 

[Esky]

Alodora - thanks, we don't know, if we get lucky then he won't be on Chemo

(he is currently on watch and wait, CLL doesn't get treated immediately as it is not curable, but, they an extend life expectancy by using chemo when the symptoms get really bad)

If he is on chemo, then he probably wouldn't be able to travel.

 

[Aladora]

Alodora - thanks, we don't know, if we get lucky then he won't be on Chemo

(he is currently on watch and wait, CLL doesn't get treated immediately as it is not curable, but, they an extend life expectancy by using chemo when the symptoms get really bad)

If he is on chemo, then he probably wouldn't be able to travel.

Oh sorry! I read that you posted about increased fatigue and compromised immunity and my brain immediately went to chemo since those are two big side effects of treatment.

I'll go back to my original advice, look into a wheelchair and make sure you take lots of time to rest. My DS is autistic so we always leave the park just after lunch to give him time to decompress and reset so you might find that an afternoon rest period is beneficial to both your son and your husband.

 

[WheeledTraveler]

Will there be any adults on the trip other than you and your DH? He's not going to be able to self-propel when sitting in it so will need to be pushed. That's not easy on the pusher. Of course, the con with the ECV is that he needs to be mentally with it enough to see and prepare for sudden stops and tight turns. It also probably does have a little less protection from getting close to people compared to a wheelchair. If I'm doing my math correctly, looking at your ticker, you're going in mid-December which could mean you catch some of the busiest days of the year (looking at crowd charts, it looks like the huge crowds usually start around Dec 20). Whether you'll be hitting those crowds or the low levels that occur earlier in the month, I'd expect to spend limited time in the parks.

If you can, plan in days to hang out at your resort in the middle of your trip (or spread across) when you book. That will allow your DH to rest and the rest of you can both rest and check out the other things at the resort. Depending on what your family needs for sleep overnight, you may do better with a park plan that has 2-4 hours (at the most) in a park as soon as it opens, then back to the resort to rest and maybe go back in the evenings for a couple hours depending on how he's feeling. If you manage more than that, fabulous, but it's very easy to underestimate the energy it takes to be in the parks even for those of us who have dealt with severe fatigue for years. If needed, he can also lie down to rest/nap in First Aid for a bit (I don't know if they have a time limit, but I'm fairly certain they'll allow at least an hour).

Make sure you're all drinking liquids pretty much constantly (water is best unless your DH needs the electrolytes in a sports drink). Also, try to eat regularly and try to get to restaurants (of pretty much any type). You might consider bringing some snacks along in case your DH is hungry and you can't get food quickly (assuming he's eating relatively normally). It can take quite a while even at QS restaurants to get food during "prime" meal hours on days when the park is very busy so you may need to factor that in. Both the liquids and the eating regularly will help with fatigue. Even using a wheelchair or ECV, he'll likely be doing far more that he does at home and his intake needs to reflect that. As well, you'll be dealing with any issues that relate to the heat; liquids, especially, will help with that.

I hope you're able to take the trip as it is planned rather than having to move it sooner. Whenever you have it, I hope you have a great time!

 

[Esky]

No problem, unfortunately, those ore the big symptoms of his actual cancer, before they even get round to treatment.

That sounds sensible re down time, it's why I am thinking Poly, on the monorail, being able to get back to the resort to rest easily and quickly is probably a priority.

 

[Esky]

Thanks for this, It's a lot to think about, it's jut going to be me, DH, DS (then 10, ASD) and DD (then 3)

I m wondering whether it might be too much for me, never mind my poor DH!

 

[disney david]

No problem, unfortunately, those ore the big symptoms of his actual cancer, before they even get round to treatment.

That sounds sensible re down time, it's why I am thinking Poly, on the monorail, being able to get back to the resort to rest easily and quickly is probably a priority.

Keep in mind poly is dojng a lot of construction if you choose contemporary it gives you the option of a walking path. Just in case the monorail is down so you don't have to use the launch to get back to poly or the ferry to ttc and use the back way to poly.

The poly is lovely and don't want to steer you away from it just a idea.

 

[Esky]

Yeah, that's worth a thought too. DS would love the contemporary, but DH really wants to try the Poly (we love Ohana!)

Hopefully, we can hold of our trip til the construction is finished, otherwise, we might choose the contemporary, thanks

 

[disney david]

Yeah, that's worth a thought too. DS would love the contemporary, but DH really wants to try the Poly (we love Ohana!)

Hopefully, we can hold of our trip til the construction is finished, otherwise, we might choose the contemporary, thanks

Your welcome the Poly is great to and once their done it look really great with all the changes. Their both great resorts so which ever you choose your have a great stay.