Heat in June vs April for spec. nds. child

[goofyandmore]

Hi everyone. My 8 year old daughter has PVL, is mainly non-verbal, has sensory integration dysfunction, and has had a few seizures in the last year when her temperature goes up (anything just under 100 is enough to cause it). She also has a problem in extreme heat. My husband wants to go at the end of June (wants to lose weight before going) but I was leaning toward the end of April when the kids are out for spring break because it would be cooler. I have been there in April and August and felt I would never do August again-heat and rain.

Even if I went in April, I wouldn't take her much to the parks during the day but would hang out by the polynesian. But if the heat is that bad to make swimming unbearable, then maybe June isn't a good idea.

If I can't get this worked out, I will probably tell hubby to go with my two boys (no issues with them) in June and stay home with my daughter and visit my mom's pool instead here in NJ.

Any thoughts?

 

[SueM in MN]

Here are a couple of sites with average Orlando temperatures:
http://countrystudies.us/united-states/weather/florida/orlando.htm
http://www.intellicast.com/DrDewpoint/Library/1140/

The biggest differences between April and June are the humidity is higher in June (more days of rain) and the average low is lower in April. That means it tends to cool down faster and farther in April once the sun goes down and it also tends to take longer to reach the high once it starts to warm up in the morning.

I'm sure some of the posters who live in Florida can give you some more exact advice.

 

[goofyandmore]

Sue, thanks for the info. Sounds like April would be better temp and rain wise, but now it looks like June is going to have to be a definite since my older son has a lot of studying to do during Spring break for AP tests and Subject II tests for the SAT. Maybe next year when he doesn't have to worry about these standarized tests, we can make it for April.

It also looks like I will be going with my daughter since the boys don't want to go without me. So, I'll spend some quality resort time with her during the day while hubby and the boys hit the parks early before it rains and then go back in the pm.

I think if I can find a good stroller too for her that is really comfortable and blocks the sun reasonably well, it will be easier to walk around the resort with her even though she is 8 and tries to get up and run off into the Seven Seas Lagoon, etc.

Thanks, Carolyn

 

[SueM in MN]

This site has a lot of good strollers to look at. You should be able to get insurance to pay for one; your doctor can probably come up with justification easily of why you would need one for her.

 

[michelle9343]

goofyandmore
Since it will definetly be in June, I thought I would give you some ideas.I live an Fla and my DD has seizures(+ a ton of other issues) I do still take her to the parks in the summer.Here are some ideas. 1st if you are early risers, the mornings would be an idea. The parks are less crowded and the temp doen't reach its high untill around 4:00. I also would suggest that you can cool off walking through the stores. We enter main street and use the stores as our walkway. The First aid station is a wonderful place to take a break. They are very helpful , we use them all the time to change a diaper or take a break from the heat. Since you are on a monarail resort you could easily visit the other resorts for a change of pace.Have a magical trip.

 

[goofyandmore]

Thanks Sue and Michele.

Sue, yes, I think she would qualify for a stroller through insurance because even though she can walk, run; she has hypotonia and when she is out of the stroller will think nothing of running into a street, a river, etc.

Michele, I have never seen the first aid stations, but need to. She is still in pull up's (actually have to find something bigger soon) and I usually stand on long lines in bathrooms for the handicapped stall. I will have to check the maps. Also, I am hoping to be able to check out the shops with her and walk around the polynesian (grand floridian maybe too), but it will be really tough with her behaviors-she is 8 and will try to get out of the stroller or try to pull down merchandise, scream when she doesn't get her way, etc. Fingers crossed though that pixie dust comes my way.

My other really huge concern is what she will be like on a plane from NJ. Two years ago we thought it was a miracle that she sat for 2 and 1/2 hours even with the window banging and trying to throw stuff at the bold head in front of her. She can really scream really loudly too. I just can imagine the looks of the other passengers. I wish there was a way to be assured I could book a flight that isn't so crowded. I am also thinking of a late night flight.

Carolyn

 

[JohnnySharp2]

Our son is 8 and is Autistic, he has suffered in the past with seizures but since we have been on our current treatment he has not had 1 for 2 years.

We have to go in August because of the UK school holidays when again it is very hot, we just try and avoid the parks at the hottest times of the day and do them in small doses, taking regular breaks on the rides etc where there is air-con.

As others have said June will be hotter than April, having a stroller (we bring our own) that offers protection from the sun (especially the face and head) is very important too.

 

[goofyandmore]

Hi Johnny and all, can I ask what treatment has been working for your son and the seizures? I have been trying to steer clear of meds if we can and improving her diet-no more junk food, just healthy stuff, and nothing that will constipate her like breads. Our neurologist suggested a modified atkins.

My worry about the meds is that with many people I have heard that even when the kids are sick, the seizures may tend to come out and that is the only time she has had a seizure, when she is sick.

Also, what type of stroller do you use? Considering her size, I have to find something better. thanks, Carolyn

 

[michelle9343]

Carolyn
My DD is also 8 and I totaly understand the pulling down of merchandise while shopping. I have gotten really good at catching falling merchandise .For some reason my DD behavior is so much better at Disney. If I take her in target or walmart she can be such a little beast but bring her to Disney and she is such a little angel. It must be all the pixie dust.
The first aid stations are a godsend. The MK one is between Caseys and Crystal Palace, Epcot is is behind Horizons, Ak Past Pizzafari on your left side and a MGM it is by the park enternce.I now use Goodnites all day for my DD they can used up to 100+pds.

 

[bopper]

Is there anything that distracts your daughter? Does she like watching videos? maybe you could get her a portable dvd player and put her favorite movie on during the flight.

 

[LMC]

I wish my DS's pediatrician would allow us to get a chair due to his hypotonia. I had to rent one the tail end of our two week trip as it was just too much for him. We go to WDW ALOT so renting gets expensive! Maybe the neuro would give an order for a wc. The pediatrician thinks that once they start using the chairs they loose whatever muscle they do have; but I know from just being his mommy that he needs one for trips such as these.

Definately get the GAC. What is PVL? And look for the companion bathrooms. I think I have read here before that the parks give out "special" maps and those facilities are marked on those maps and not the regular maps you pick up at the main gate.

No suggestions on flying as I don't!
Also sent you a PM.

Sue, yes, I think she would qualify for a stroller through insurance because even though she can walk, run; she has hypotonia and when she is out of the stroller will think nothing of running into a street, a river, etc.

Carolyn

 

[JenJen]

goofyandmore I wanted to let you know even though I am not a child I am on the atkins type diet and my seizures are gone. I am not saying it would work for your child but they have me almost weaned off all seizure meds so I think it is the diet that is helping.
Maybe talk to a alternative med doctor that specializes in seizures and see if you can get your child on a special diet for seizures. There have been some great successs stories with deit and seizure control. Also do a lot of searches on the net. But make sure you talk to your childs doctor before adjusting there diet.
((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))
Jen

 

[tigger2on]

I am a mom of a 9 yr old dd who is non-mobile & Non verbal. We have recently gone from a wheelchair to a permanent stroller as she can sit in other forms of seating/standing equipment, and can sit cross-legged on the floor too.
However, before we got the Convaid Safari, we purchased the Convaid Metro for her. This is the cheapest model of umbrella-like stroller around. We also purchased it from www.adaptivemall.com because their prices are the best. (We did not have insurance to pay for it. CDN...)
These are lifesavers for your back and a fatigued child... a little heavy the bigger they get, but worth every penny. We went larger in size due to growth.
Good luck in JUne... we thought about it but have decided to stick with Spring/fall.
Don't forget a trip report

 

[SueM in MN]

And look for the companion bathrooms. I think I have read here before that the parks give out "special" maps and those facilities are marked on those maps and not the regular maps you pick up at the main gate.

They are not on any maps, but you will find the locations listed in the Guidebook for Guests with Disabilities for each park. You can pick those up at any Guest Relations area or, if you go to the disABILITIES FAQs thread, there is a link to the page on the Disney website where you can access them.

She is still in pull up's (actually have to find something bigger soon) and I usually stand on long lines in bathrooms for the handicapped stall.

If you do an internet search for "incontinence briefs", you should find a lot of companies that sell bigger things. Some of them are adult size and even the smallest is too big for a larger child.
One thing you can find in most stores (Target, grocery stores, Walmart) is Goodnights. They are made for older children who may wet at night, but they work really well for any small adult or older child who needs a product like pullups.

 

[Disbug]

Hi everyone. My 8 year old daughter has PVL, is mainly non-verbal, has sensory integration dysfunction, and has had a few seizures in the last year when her temperature goes up (anything just under 100 is enough to cause it). She also has a problem in extreme heat. Even if I went in April, I wouldn't take her much to the parks during the day but would hang out by the polynesian. But if the heat is that bad to make swimming unbearable, then maybe June isn't a good idea.
Any thoughts?

Hi, goofyandmore! I thought I would share a really neat tip with you for keeping your daughter cool. First off, dress her in CoolMax clothing. Then for her stroller, get a CoolGel pad that you soak in water for 20 minutes (I use the bathtub.) This activates the crystals in the pad and makes a comfy gel seat that acts like a heat sink. This will keep her cool as a cucumber! These come in different sizes and I found one that was perfect for my Daughters stroller/wheelchair. I also found some clip-on battery operated fans with the rubber blades that I clipped to both sides of her wheel chair so that she was always in a breeze. To top it off, I had a spray bottle that I would use to spritz her if she looked hot (or thirsty).

We are Florida natives and our daughter also is subject to seizures. This has always worked for us...

 

[rrpesek]

goofyandmore,

Depends makes a Youth size that fits my daughter well. We order them through HDIS. I have not seen them available in a retail store, at least not in my area.

Hope this helps!