First trip with our son with multiple special needs

[Twice_as_Nice]

Good morning, I am a long time member mostly lurker as we have only been to WDW once 4 years ago.

After a LONG difficult past 3 years we have decided to make our first trip as a family of 5. In 2011 we were supposed to make a bounce back trip but God had other plans for our family and we welcomed baby#3 at 26 weeks gestation he was 1lb 8oz. He spent 115 days in the NICU 3 hours away from our home and has been through more than anyone I know in his short 28 months of life.

Our older 2, 8 & 7, have been amazing through all of the hospitalizations and therapy appointments that we have endured, the past 2 summers we have spent with the baby in the hospital for months at a time which is 3 hours away. Now that we feel like we are catching our breath we have decided we need a BREAK and are heading to WDW in August for 11 days.

I was hoping for some advice on the new DAS program and if/how we might use it. Our little guy has cerebral palsy, hydrocephalus, septo-optic dysplasia which means he has limited vision, he does not speak but signs a bit, does not walk, and has a bone marrow failure disorder called Fanconi Anemia.

Obviously I really want him to get the most possible out of this trip and I am trying to plan to make our trip as smooth as possible.

I am going to see about requesting a ground floor room as I think that will be helpful with his equipment. We are staying at Port Orleans Riverside.

Our ADR time to book is soon on the 18th so I am trying to figure out that also.

For shows would he need a DAS to sit closer to the front so he could see?

Thanks so much for any help you can give.

 

[MSSANDRA]

First sending hugs! My DS21 was born at 24 weeks and about your son's size. We have been beyond blessed to escape the majority of the issues your little one has but we have a network of ICU friends that have not and know a bit about a few of the issues. My DS did have the vision issues. I think what may be of great value to you will be his stroller as a wheel chair tag. Allows you to keep your stroller in all lines. The new system works much like a PF and gives you a return time to come back. This might be a help if he gets upset in lines or germs are a huge issue. For the sight issues, you tell them when you get to the CM your child has vision issues and needs to set up front. There are others here that know much more than me that can help but wanted to send hugs!!!!

 

[Twice_as_Nice]

Thank you so much. I think we will get the tag for the stroller, I am hoping to mostly use my ring sling with him since he likes it as his safe place and it will also help keep him away from germs.

He is still quite small, he's 19lbs and 31 inches long and is 2 years 4 months right now he will be almost 3 on our trip. Luckily he doesn't have his feeding tube anymore after spending 2 months in an inpatient feeding therapy program this summer so that is a huge relief.

The germs are one of my bigger concerns. I am praying that we will get the OK from his doctors to go as it gets closer to our trip. Currently his levels are not great at all and his doctor told us he is in the beginning stages of bone marrow failure so he will be having a bone marrow aspiration soon. Winter is killing us right now, he's battling bronchitis at this moment.

Cognitively he is at a 9 month old level so I am trying to think of what rides he will most enjoy. His big brother would love for him to do the Pirate League with him but he will be a couple weeks away from 3yrs yet and I am not sure about doing it. I was thinking of trying to find him a costume at home and bringing it with us for him to wear the day that his brother does it.

 

[Schmeck]

Good morning, I am a long time member mostly lurker as we have only been to WDW once 4 years ago.

After a LONG difficult past 3 years we have decided to make our first trip as a family of 5. In 2011 we were supposed to make a bounce back trip but God had other plans for our family and we welcomed baby#3 at 26 weeks gestation he was 1lb 8oz. He spent 115 days in the NICU 3 hours away from our home and has been through more than anyone I know in his short 28 months of life.

Our older 2, 8 & 7, have been amazing through all of the hospitalizations and therapy appointments that we have endured, the past 2 summers we have spent with the baby in the hospital for months at a time which is 3 hours away. Now that we feel like we are catching our breath we have decided we need a BREAK and are heading to WDW in August for 11 days.

I was hoping for some advice on the new DAS program and if/how we might use it. Our little guy has cerebral palsy, hydrocephalus, septo-optic dysplasia which means he has limited vision, he does not speak but signs a bit, does not walk, and has a bone marrow failure disorder called Fanconi Anemia.

Obviously I really want him to get the most possible out of this trip and I am trying to plan to make our trip as smooth as possible.

I am going to see about requesting a ground floor room as I think that will be helpful with his equipment. We are staying at Port Orleans Riverside.

Our ADR time to book is soon on the 18th so I am trying to figure out that also.

For shows would he need a DAS to sit closer to the front so he could see?

Thanks so much for any help you can give.

The DAS works as a 'virtual queue' for one attraction at a time. The person who is issued the DAS must go on the attraction. If the only issue with your son for queues is that he needs to stay in his sling or stroller, then the DAS will not really help you at all.

For special seating at shows, you need to let the CM at the show know your needs. The DAS only works for queues for attractions.

 

[Twice_as_Nice]

Well that is good news, one less thing to worry about and have to wait in a line for (the DAS pass).

 

[kandb]

I found an inexpensive pirates costume on amazon.com for my son when he did the pirates league. He loved it but got a little scared when they started to put a big beard (in makeup) on his face. It was a nice experience.

 

[Twice_as_Nice]

His skin is s sensitive, he breaks out with even scent free products, and when he is in the sun even for 2minutes any exposed skin blisters that I am not sure the painting of the face part would be good for him.

Older brother will do it for sure though.

 

[Yoshiandi]

His skin is s sensitive, he breaks out with even scent free products, and when he is in the sun even for 2minutes any exposed skin blisters that I am not sure the painting of the face part would be good for him.

Older brother will do it for sure though.

I am not trying to be mean or anything.. but WHY would you take him in August (the HOTTEST part of the year for Florida with the MOST sun) when he has that bad of a skin issue?????

 

[mom2rj]

If he is two and a half, he could possibly qualify for Make a Wish.

 

[Schmeck]

I am not trying to be mean or anything.. but WHY would you take him in August (the HOTTEST part of the year for Florida with the MOST sun) when he has that bad of a skin issue?????

Because in August (at least the beginning of the month) the parks still have the extended summer hours - lots of time to do the parks on EMH mornings, go back to the room to get out of the sun during the hot part of the day, and then return to the parks for lots of evening/night hours. I have to stay out of the sun (cancer) and love August.

 

[Twice_as_Nice]

I am not trying to be mean or anything.. but WHY would you take him in August (the HOTTEST part of the year for Florida with the MOST sun) when he has that bad of a skin issue?????

Regardless of when we take him it's something we will have to deal with. We are trying to figure out the best way to combat the issue with sunscreen and clothing as well as sunshades.

 

[Twice_as_Nice]

If he is two and a half, he could possibly qualify for Make a Wish.

He is currently 28 months old. Unfortunately he doesn't speak and doesn't have the cognitive ability to make a wish so I don't believe he would qualify, from what I read on their website.

 

[kritter47]

Non-verbal and developmental delays do not prevent children from MaW. I've had lots of kids who were totally unable to verbalize and extremely delayed for one reason or another.

MaW has only three criteria that I'm aware of - never been granted a wish before, 2.5 years of age or older and a life-threatening medical condition as determined by the child's doctor in conjunction with our eligibility guidelines.

ETA: We do want the wish to be the child's own, but we also understand that all eligible children may not (or may never) have that ability, and we are more than willing to work with that. If you believe he may develop verbal and cognitive ability to be able to really understand the concept as he gets older, it's perfectly fine to wait to refer him. But it's not an exclusion criteria either.

 

[Twice_as_Nice]

Non-verbal and developmental delays do not prevent children from MaW. I've had lots of kids who were totally unable to verbalize and extremely delayed for one reason or another.

MaW has only three criteria that I'm aware of - never been granted a wish before, 2.5 years of age or older and a life-threatening medical condition as determined by the child's doctor in conjunction with our eligibility guidelines.

ETA: We do want the wish to be the child's own, but we also understand that all eligible children may not (or may never) have that ability, and we are more than willing to work with that. If you believe he may develop verbal and cognitive ability to be able to really understand the concept as he gets older, it's perfectly fine to wait to refer him. But it's not an exclusion criteria either.

Interesting. Maybe it's different from the US & Canada? This is what the Canadian site says for eligibility

Eligibility:

The child is between the ages of 3 and 17
The child has a life-threatening medical condition that is currently in the life-threatening stage
The child has the cognitive ability of a 3-year-old and can communicate and comprehend his/her wish
The child has not received a prior wish from any wish-granting organization
The child’s treating physician and our Medical Advisor deem the child medically able to participate in the wish

Maybe some day he might get the cognitive ability to qualify, that's the goal and BEYOND!

 

[StitchesGr8Fan]

We went in August and I had problems with my sensitive skin getting irritated because of the humidity. Everything was damp all the time, even my clean clothes. Keep that in mind when you are planning his wardrobe. I know you have to keep him out of the sun, but even at night he is going to have moisture being held against his skin anywhere there is fabric.

 

[Twice_as_Nice]

We went in August and I had problems with my sensitive skin getting irritated because of the humidity. Everything was damp all the time, even my clean clothes. Keep that in mind when you are planning his wardrobe. I know you have to keep him out of the sun, but even at night he is going to have moisture being held against his skin anywhere there is fabric.

I hadn't thought about the humidity, thank you so much for bringing this up. Being that we are in Canada we don't get much humidity here.

 

[StitchesGr8Fan]

I'm going to be honest. I think you are making a huge mistake taking him in August. I understand you wanting to take advantage of the later park hours, but in reality it isn't that much cooler. We are talking about sweltering heat and humidity that makes you sweat just stepping outside the door at 9 pm. Then you are going to take him in to shops and restaurants that have the A/C up so high that it is going to be a shock to his system. I think your family trip is going to turn in to one of you staying with him in the hotel room while the other parent takes the 2 older kids to the parks or the pool. Especially since you are from Canada, I think the weather could be a dangerous shock to his system.

 

[Amanda999]

I'm going to be honest. I think you are making a huge mistake taking him in August. I understand you wanting to take advantage of the later park hours, but in reality it isn't that much cooler. We are talking about sweltering heat and humidity that makes you sweat just stepping outside the door at 9 pm. Then you are going to take him in to shops and restaurants that have the A/C up so high that it is going to be a shock to his system. I think your family trip is going to turn in to one of you staying with him in the hotel room while the other parent takes the 2 older kids to the parks or the pool. Especially since you are from Canada, I think the weather could be a dangerous shock to his system.

Hi! I have taken my 'special' child in (late) August 3 times, Dec, Feb, April x2, June x2 IIRC. I 2nd the above. I really encourage you to go early Dec or early Feb, when the weather and crowds are far, far better, and stay at a monorail resort (yes, expensive, but worth it when the family needs to get to the room for a break, and part of the family heads back out). We live in MA, and the heat and humidity (and fast moving thunderstorms!) in Aug in Orlando can be shocking. EMH is NOT worth it, trust me - you will get FAR more done (touring-wise) at a quieter time of year. I doubt any teacher of your older child will mind him/her missing a week of school for such a special family vacation. I think it is hard for someone who hasn't been to Disney in the summer, with children, to realize how challenging the heat, humidity, and crowds are - and how going when it is cool and less crowded is a completely different vacation (so much more relaxed and comfortable). (FYI The resort pools are all heated - my kids and I loved swimming in December.)

Not to beat a dead horse, but even the walking and waiting to get fast food at a park in August is difficult. You sweat even in the shade.

Separately, you asked about rides. A child in line with us once at Peter Pan's ride had challenges somewhat similar to your child (from what they described), and the family said she loved that ride so much. It is cool and dark (but not black), and not as loud as Small World. Just my 2 cents on that. Good luck!

 

[Yoshiandi]

I hadn't thought about the humidity, thank you so much for bringing this up. Being that we are in Canada we don't get much humidity here.

I am in Niagara Falls.

The heat in August was like nothing I have ever experienced nor ever want to do again. Both my daughter and son have Down Syndrome and the heat got to them something fierce. My daughter went through our spray bottle fans so fast just to cool off, we started putting ice in them. They barely lasted even with taking afternoon breaks.

I told my hubby I would never go back at that time. It was hell hot in comparison to our summers.

 

[Twice_as_Nice]

Thank you very much everyone for the advice.

When we went in Dec 2010 it was COLD COLD COLD and our trip was honestly not that enjoyable because it was so cold.

We looked at the weather historically between August and September and it seemed to not be that different. Unfortunately August or September are really the only times we can go right now so we will just have to try our best to make it work I guess.