Feeding tube, other diagnosis and DAS

[kidneymomma]

My son is fed by a feeding tube, we are working with an OT and he was making amazing progress until his last surgery and until we are back to using it the majority of the time . In addition to feeding tube he has a strict medicine schedule/feeding schedule due to his kidney disease and his hypertension. I take him shopping and to restaurants and access his tube and give him his medicine but it would be done more easily say at a bench than in a line. Also, we have to check his blood pressure before we give him his medicine, something I doubt I could do in a line. If I explain this to a CM would they likey give us a DAS? I also want to ask for a stroller as wheelchair as he has a condition that causes poor muscle tone & he can't stand very well and has hip dysplasia.

 

[Mousequake]

While I can't answer whether they'd be likely to give him a DAS or not, all you can do is explain to them why his needs will affect his ability to wait in the regular line. Same with a stroller for wheelchair tag-- explain his needs, and I'm betting that you get one no problem.

To answer a question you didn't ask: my daughter is tube-fed as well, and First Aid has always been super-accommodating to her needs. They'll let you use a private room to do tube feedings or administer medicines if you'd prefer that (which we do, since my daughter is older and is acutely away that she's 'different' from most kids and prefers to do it in private). They'll also store medicine for you, but not the tube-feeding formula, as that's considered food and they aren't allowed to store food.

 

[gap2368]

I do not think you will have a problem getting a stroller as a wheel chair tag a DAS card I think it will depend on the CM as they could say well if you had reservation for a restaurant then you too would be on a schedule. I know it is different then that with your son but a CM may not relies that

 

[kidneymomma]

Most of our ADR are for dinner resi; I'm planning on doing QS for lunch. If something he could enjoy has a long line it could be helpful to have a DAS. I know we will use FP+ as well but was hoping to use those for characters as he loves mickey and my daughter loves princesses & the parade and firework viewing areas. I know the DAS has a return time like FP so we could plan accordingly.

 

[gap2368]

The DAS has no end time so unlike the fast pass you can come back a few hours latter. I am a little doubtful you would qualify for a DAS but the only way to know for sure is to ask at GR

 

[kidneymomma]

From what I read it seems like DAS is geared more towards autism and that's where I think Disney has failed BIG time my son has an invisible disability. Looking at him you would have no idea he only has one kidney; his kidney disease makes him easily fatigued. He's also non-verbal but not autistic so he isn't going to understand us explaining to him why there is an 1 hour wait for a 90 second ride.

I'll admit this trip is more for our daughter her life has been turned upside down since his birth but I want him to enjoy it as he can as well.

 

[OurBigTrip]

No one can say for certain whether or not you will receive a DAS; but if you're going to request one, you need to focus on how his disability (that isn't managed by the wheelchair or stroller) affects his ability to wait in line. Fatigue is handled by the wheelchair/stroller, so it's most likely you won't receive a DAS for that. You need to be able to explain why he can't wait in the standby line, and I'm doubtful that "he won't understand why he has to wait" will be sufficient.

 

[gap2368]

I know how you feel and no Disney is not just giving people with autism the DAS I use a DAS for a few things and the one thing I think I would need a DAS most for Disney says I do not need it for that I would just go to gr and explain your sons needs

 

[ember303]

My son is fed by a feeding tube, we are working with an OT and he was making amazing progress until his last surgery and until we are back to using it the majority of the time . In addition to feeding tube he has a strict medicine schedule/feeding schedule due to his kidney disease and his hypertension. I take him shopping and to restaurants and access his tube and give him his medicine but it would be done more easily say at a bench than in a line. Also, we have to check his blood pressure before we give him his medicine, something I doubt I could do in a line. If I explain this to a CM would they likey give us a DAS? I also want to ask for a stroller as wheelchair as he has a condition that causes poor muscle tone & he can't stand very well and has hip dysplasia.

My little guy is tube fed. I honestly would not feed him in a line or give his meds. I try to do that where it is quiet. If you explain to them that he needs his stroller because you are unable to carry him and he is unable to walk very long they should allow him to use his stroller. I completely understand about the med schedule we are on one too. I just time it out and make sure I can give them. I also feed him when we are out and about. Plan his meals just like when he would eat a typical meal and snack.

 

[tinkerpea]

From what I read it seems like DAS is geared more towards autism and that's where I think Disney has failed BIG time my son has an invisible disability. Looking at him you would have no idea he only has one kidney; his kidney disease makes him easily fatigued. He's also non-verbal but not autistic so he isn't going to understand us explaining to him why there is an 1 hour wait for a 90 second ride.

I'll admit this trip is more for our daughter her life has been turned upside down since his birth but I want him to enjoy it as he can as well.

Hi just wanted to say that,
I've gotten the DAS a few times and I do not have autism. ( I'm a mother of 3) with a illness that effects my wait in the line, at certain times, due to medical needs.
There are times when I do not technically fall under the DAS qualification, as treatment is different like below...
I have to take medication at certain time of the day, and it makes me feel incredibly sick. I have had to schedule my fp+ around those times, as I have to go back to resort to take the meds. I feel that this would be similar to you, you could schedule your fp rides around his feeding and taking his blood pressure, like people with diabetes do.

Another quick note was you say your son is non-verbal but not autistic. Then you say but he won't understand why he has to wait for a ride? Why is that? " is there a medical reason at all" that is what you would have to explain to GS, Not the diagnosis but why your son would nor understand why he has to wait.

My children when they was younger didn't understand having to wait in line either, I'm sure most children don't want to wait in a long line for such a short ride.
My oldest has aspergers and we had to teach him to wait, just like his brothers, as much as it was possible! then his brothers had to learn that when the oldest didn't want to do a ride, then they would have to que.

You will not struggle with getting a stroller as a wheel chair, but a DAS I feel will be far more difficult if you can not explain why a wheelchair/stroller doesn't fit his needs.

 

[kidneymomma]

Hi just wanted to say that,
I've gotten the DAS a few times and I do not have autism. ( I'm a mother of 3) with a illness that effects my wait in the line, at certain times, due to medical needs.
There are times when I do not technically fall under the DAS qualification, as treatment is different like below...
I have to take medication at certain time of the day, and it makes me feel incredibly sick. I have had to schedule my fp+ around those times, as I have to go back to resort to take the meds. I feel that this would be similar to you, you could schedule your fp rides around his feeding and taking his blood pressure, like people with diabetes do.

Another quick note was you say your son is non-verbal but not autistic. Then you say but he won't understand why he has to wait for a ride? Why is that? " is there a medical reason at all" that is what you would have to explain to GS, Not the diagnosis but why your son would nor understand why he has to wait.

My children when they was younger didn't understand having to wait in line either, I'm sure most children don't want to wait in a long line for such a short ride.
My oldest has aspergers and we had to teach him to wait, just like his brothers, as much as it was possible! then his brothers had to learn that when the oldest didn't want to do a ride, then they would have to que.

You will not struggle with getting a stroller as a wheel chair, but a DAS I feel will be far more difficult if you can not explain why a wheelchair/stroller doesn't fit his needs.

He's non verbal but not autistic because of his lack of muscles development in his mouth would be the best way to describe it. He spent his first 84 days in the NICU and developed SEVERE oral aversion, he muscles never developed so he could suck, swallow, or talk, after our nicu discharge he basically was in/out of the hospital for the first 6 months of his life. He's underwent 15 surgeries and isn't 2 years old. He's now working with an OT but just had another surgery so had another major set back, and works with a speech thearpist as well. He knows some sign language; eat,milk,more,please,help,he points to things he wants. But with him its a developmental delay. Believe me with the amount of specialist he sees someone would have realized by now if he had autism.


And I believe in teaching him the same things as our 5 year old , be patient, wait your turn, etc. but I want this trip to be enjoyable for all of us.

 

[OurBigTrip]

And I believe in teaching him the same things as our 5 year old , be patient, wait your turn, etc. but I want this trip to be enjoyable for all of us.

So does every family with a 5 year old that understands waiting and a 2 year old that doesn't (and most, if not all, two year olds don't understand waiting; it's not limited to two year olds with disabilities).

If his disability makes him unable to wait in a line, which from your description is not the case, then a DAS wouldn't be appropriate, IMO. That doesn't mean you can't ask for one of course, but I wouldn't count on getting one.

 

[SMD]

The best way to approach is always to have a plan without DAS as it can never be guaranteed. If you his medicine and feeding schedule, you can pre-schedule FP and ADRs around that. DAS is not intended to compensate for time not enjoying attractions due to medical or personal needs. It is also not a placeholder so that you can get on a ride after eating or resting or other basic needs. Every guest would like to have an extra unlimited FP to use while having lunch or going to the bathroom, it's not operationally possible. Millions of people in this country alone have 1 kidney, they access attractions with no additional accommodation, just good planning when necessary. Maybe a guest needs to use the bathroom more often than they feel is "average" or a guest takes longer to physically eat a burger than other guests. Disney has to set a limit to what they will accommodate with a DAS and it's for people who cannot go through the physical queue environment. From your description, a stroller a wheelchair solves your issue accessing queues. I also don't see why Disney is going to issue a DAS because of the claim that someone who is non verbal (does not speak) won't understand waiting for an hour relative to the length of a ride. Being non verbal isn't a cognitive issue and not understanding the length of a queue for a short line applies to pretty much every guest. Another thing you can try for your daughter is rider swap. If you know that your son will need medicine or food within a few minutes you could choose a ride that offers rider swap, so that while she and one parent are waiting in line, the other parent is taking care of your son's needs. Then you swap and the other parent can ride again with your daughter.

 

[tinkerpea]

He's non verbal but not autistic because of his lack of muscles development in his mouth would be the best way to describe it. He spent his first 84 days in the NICU and developed SEVERE oral aversion, he muscles never developed so he could suck, swallow, or talk, after our nicu discharge he basically was in/out of the hospital for the first 6 months of his life. He's underwent 15 surgeries and isn't 2 years old. He's now working with an OT but just had another surgery so had another major set back, and works with a speech thearpist as well. He knows some sign language; eat,milk,more,please,help,he points to things he wants. But with him its a developmental delay. Believe me with the amount of specialist he sees someone would have realized by now if he had autism.


And I believe in teaching him the same things as our 5 year old , be patient, wait your turn, etc. but I want this trip to be enjoyable for all of us.

I asked those questions not because I thought he might have autism due to being non verbal, but because I wanted to make sure I wasn't missing anything that would make you need a DAS for waiting, It seems to me you want DAS so you can make up lost time on rides?
From everything your saying it seems that you want a DAS so your family can have a good time, not stuck in a Q.
Unfortunately it just doesn't work like that, and your child doesn't seem to have a reason that would warrant a DAS.
A stroller as a wheel chair seems to help your issues.
No 2yr old knows wants to que, I don't know of any 2yr old who understands really that they are going to be in a line for a ride, unfortunately that is what comes with taking your children to a theme park.
While nobody can say you won't get a DAS we can give advice on not banking on one, as your issues don't exactly require one.

 

[TheDisneyDoll]

This doesn't sound like a DAS qualification it sounds more like a scheduling thing and a mobility problem, but it doesn't hurt to ask. When it comes to tube feeds and medication requirements, be prepared to distribute at any time necessary. When it comes to something important like that I would toss other peoples comfort levels out the window. For your family to enjoy your trip safely you have responsibilities you should not have to plan to set time aside to hide or cover when it is something like this.
Tube feedings are not gory or gross by any means.
You sound comfortable distributing them in public, I would just be prepared for than in the worst case scenery and not let it interfere with the comfort of your trip the best you can

 

[gap2368]

From what I read it seems like DAS is geared more towards autism and that's where I think Disney has failed BIG time my son has an invisible disability. Looking at him you would have no idea he only has one kidney; his kidney disease makes him easily fatigued. He's also non-verbal but not autistic so he isn't going to understand us explaining to him why there is an 1 hour wait for a 90 second ride.

I'll admit this trip is more for our daughter her life has been turned upside down since his birth but I want him to enjoy it as he can as well.

I think this answered your question
you say he tiers easily a das will not help with that but a stroller as a wheel chair will
2 there is really no 2 year old that understands time and the fact that one line might be 10 minutes and the other an hour one ride might be 45 seconds and another 3 minutes.

one thing you can do just like any one with a small child is bring things for them to do in lines bubbles do wonders for kids and other around a small toy and a good number of lines are interactive with a DAS card you miss that find hidden mickeys ( this might be something you can do more with your daughter) but if you got a DAS card then any one with a 2 year old could get one. just like people have dinning reservation you need to plane his meals this too should not need a DAS because if it dose then someone that has dinning reservation could say they need one. yes I feel sorry for your son he has been through a lot in his little life your family need some time together and your daughter is a very special little one for what she has been though if there are two adults going take some time for just her with out her brother to do some thing extra special that is just for her may be while one is taking care of your son the other can do an extra special ride or ( I drew a black on the make overs they do)

but as fair as a DAS card all you have said was I want one so my children do not have to wait.

 

[SueM in MN]

No one can tell you whether or not a DAS will be issued to your child.

Stroller as wheelchair is a separate tool; not everyone who is using a stroller as a wheelchair needs DAS.
So, you will need to explain the needs for the stroller as wheelchair and then explain the other needs/concerns related to the disability.

For DAS, the needs/concerns they consider are needs related to waiting in a regular line environment. So, think of waiting inside the line and issues you would have doing that related to your child's disability. Those are the things they will consider.
You can also check out the first post of the WDW Disability Access Service thread or post 6 of the disABILITIES FAQs thread for more information. Both are stickies at the top of this board.

 

[DisneyOma]

From what I read it seems like DAS is geared more towards autism and that's where I think Disney has failed BIG time my son has an invisible disability. Looking at him you would have no idea he only has one kidney; his kidney disease makes him easily fatigued. He's also non-verbal but not autistic so he isn't going to understand us explaining to him why there is an 1 hour wait for a 90 second ride.

I'll admit this trip is more for our daughter her life has been turned upside down since his birth but I want him to enjoy it as he can as well.

For mobility/stamina issues, Disney's standard response is to suggest a guest use a wheelchair or ECV, or a stroller as a wheelchair for smaller children. The DAS was created as a tool to help those with different issues besides mobility/stamina.