PTR - June 2017 - It's never too early to plan!

[VandVsmama]

(((ClaraOswald))) <--those are hugs Hang in there. It's challenging with a special needs child. You're doing a great job.

Re: the flight possibility on the way out to Anaheim - the one with the 2 hr layover in Vegas:
When my kids were 1.5 and 3.5, we went to Hawaii for a week. It was a difficult flight from AZ to Maui and it involved leaving our house at 3:30 am in order to get to the Phoenix airport for our flight to Honolulu. And then we had to get a connecting flight from Honolulu to Maui. Neither of my kids slept on the airplane and at one point, both of them cried for 30 min straight. And they were mad and cranky being cooped up in their car seats on the airplane. The only reason we did the trip was because my mom had terminal cancer and this was a "very last extended family vacation ever" sort of thing.

The flight was hard. Many times during the long flight from Phoenix to Honolulu, I wanted to cry right along with my kids. The flight attendants were really nice but their constant questions about if they could help with anything also totally stressed me out because it felt like everybody on board the airplane was looking at me and getting angry because I couldn't "control" my children.

And my kids were not the sort of kids who you could give them a little Benadryl and they'd fall asleep. Benadryl keeps them awake!

But we got through it. And it was worth it. I'm really glad that we did that trip.

I'm sharing this with you not to stress you out or anything but to reassure you that even if your DS does have a temper tantrum (it likely WILL happen...I pretty much expect it for any 3 yr old - autism or not), there will be people in the airport or on board the plane who will understand. Trust me on this...every other mom on the plane will probably be praying for you or sending you good vibes & good thoughts for your family because they've all been there.

On our Maui trip, we had about a 2 hr layover between arriving in Honolulu and getting on the connecting flight to Maui. I stressed a lot over this. We could have gotten a connecting flight with only an hour layover, but like you, I worried about having to rush and possibly miss the flight. I worried about the kids flipping out again about being cooped up in a seat again.

As it turns out, the 2 hr worked out pretty well. They were able to run around and stretch their legs and get some energy out. We camped out and had a picnic on the floor (using a lightweight blanket that I'd brought along). And just about the time that they started to get bored, it was time to board the connecting flight.

I even went so far as to buy cheap new toys that I brought out during the 2 flights when I was really desperate. That helped somewhat.

 

[VandVsmama]

I don't think that you should cancel your June trip. DL is SO accommodating & understanding with disabled guests, ESPECIALLY with disabled children. All of the characters are really amazing with children.

Your DS is 3. Every 3 year old will have a pretty decent number of moments during ANY day on a vacation where they get overwhelmed and have a melt down...even non-autistic 3 year olds. Just expect it to happen. But have a couple of coping strategies in your parenting bag of tricks to help your DS through it.

When my kids were 3, what worked for us was stuff like:

• stick to their normal bed times as much as possible - looks like this might not be possible on your arrival day, but you can make up for it on the other days of your trip
• stick to their regular eating schedule as much as possible. So if your child normally is hungry for breakfast at 7am, has a snack at 10am, has lunch at noon, another snack 2-3pm-ish, and dinner 6pm, then plan on following that schedule as much as you can. The familiarity provided some comfort to my kids.
• Have your kid's favorite "go to" snacks with you.
• Pay attention to your child's hungry cues and plan on having to alter meal time plans accordingly. When my kids were 3, once they said, "Mama, I'm hungry," I had about 15 min max to get food in their bellies before WWIII of temper tantrums began.
• If your DS still naps, try to give him an opportunity to nap, but also expect that a nap in the hotel room might not happen at all. So use a stroller at DL (one that you can take back to the hotel with you, so not one that you rent AT DL).
• Don't leave home without your child's favorite comfort toy/lovey. If your child is prone to get overwhelmed or scared in certain situations, bring the lovey with you. Put it in your purse/backpack and don't ever leave it in the stroller when you go on a ride. We've lost YDD's bear a few times in random places and OMG it was so traumatic! Protect the lovey with your life!
• Pack an extra dose of patience.
• When you're stressed out at DL, take a deep breath. Take a break. Sit down for a bit and know that it will all be ok.

 

[ClaraOswald]

Thank you so much for your posts! Seriously...amazing.

Last time we did encounter some nice and understanding folks on our flights. Hopefully this will be the same. I honestly try not to look at anyone...then I won't see any dirty looks. I found a necklace on Etsy that says Autism Mom. I'm not sure if it could be read from very far away...but I might get it anyway. Then if people can see it, they may be slightly more understanding.

We are planning on bringing our own stroller so we can use it to and from the hotel. He might be borderline too big for it but I think it should be okay. He doesn't really have any sort of comfort item, oddly enough. Unless books count. Last time, we went back to the hotel every day after lunch time. He didn't nap most days but it was nice to get away from the craziness for a while. We definitely plan to do that again, especially since it will be much hotter.

I am nervous about trying to keep on our sleeping/eating schedule. The 2 hour time difference might mess him up a bit. I am also worried about getting to the park at a decent time. I wish we were going when it didn't open until 9 or 10 but it will likely open at 8. There's no way we can make it there that early so that sucks for wait times.

I LOVE the parks after dark. Last time, we were barely there at night because Henry was 'over it' by then. I think it was mainly because he was mostly stuck in his stroller that trip (still fairly unsteady on his feet.) I was hoping to be in the parks during dark this time. But since it's June...the sun goes down later. If we do stay in the parks late...then it kind of throws off the next day. We will likely want to shower/bathe at night to get all the sunscreen off. So if we stay in the park late...we still need to get cleaned up...which means bedtime would be much later than at home. So I'm not sure how it will go. I suspect we'll just play it all by ear. If he gets up early...great...we get to the park early. But then we likely won't stay super late. We'll maybe 'force' him to stay late (if he's not too awful) at least one night if there are fireworks or a parade we care about. Though at this point...I suspect no nighttime parade. But if Remember...fireworks are going on...I would like to stay for them.

Eating on our normal schedule should be a bit easier. I am hungry 24/7 so that helps...ha! The bigger trick will be finding food Henry will want to eat. And getting him to sit at the table will be tricky too.

So I think we are going to be booking our flights sometime in the next week or so. Eek!

 

[ClaraOswald]

Flights are booked!

Well...I did it.....I booked our flights. EEK!

So originally I booked the 21st - 29th at our hotel. But then when Southwest released flights, I noticed it would be cheaper to go the 20th - 28th so I called and switched our hotel dates.

This weekend, I searched flights and saw that the 20th went up from around $200 (one way) to $341! And then the 28th was $240, up from $200. Eek! So I searched our original dates of the 21st - 29th and those are now around $200 each. I called the hotel to switch our dates AGAIN. Unfortunately, the rate is about $40 more for that last night but oh well. I immediately went online and booked our flights after that.

Next time, if we plan to stay at the same hotel...I will probably book an extra day or 2 at the beginning/end and that way if I need to alter dates slightly for flights...I will be able to keep the same low hotel rate. Then I can just cancel the days I don't need once flights are booked. That is actually what the guy on the phone suggested.

So yeah...flights are taken care of. I am about 50% excited and 50% nervous...ha!

Very soon, I plan to book our car rental using reward miles. Then I'll just need to purchase park tickets and book our dog's kennel. I think that might be it.

 

[Jaina]

Yay! I am excited for you that this is coming together and that you booked your flights! I am so excited to follow along with your trip!

 

[ClaraOswald]

We hit 99 days today. I was really looking forward to hitting double digits. But unfortunately, real life has put a pretty big damper on it. Yesterday, my mom was diagnosed with cancer. Needless to say, I am freaking out.

(If by chance someone from my "real life" see this....please don't mention this on Facebook or anywhere.)

 

[Gigi@Disney]

Clara, sending you (((hugs))) and prayers for your Mom. I've really enjoyed reading your PTR and hope everything works out.

 

[ADLFAN]

So sorry to hear about your mom. I hope you can battle through this calmly and strongly, and that you have a good support system in your friends and family. Hopefully planning your final details and fantasizing about your upcoming Disney trip will be a nice mental break for you!

 

[ClaraOswald]

Thanks. She met with the oncologist this week. Next week they will be doing a scan. After that we should know more. Waiting is the worst. I just hope it hasn't spread. One of the first things she said to my dad was that she did NOT want us to cancel our trip. That's so her...always thinking of other people. So we won't be cancelling at this point.

 

[Jaina]

Any updates on your mom yet? Has she had her scan?

 

[ClaraOswald]

Yes, her cancer is stage 2 and hasn't spread anywhere. It's just in her neck. She will be getting chemo for 6 months starting next week. She's feeling pretty good and the doctor has high hopes. So now we just pray and hope for the best.

Still on the fence about our vacation for reasons unrelated to my mom. Basically because of our son's current behavior. I just don't know about flying with him. I booked some back up dates at our hotel for next January/February just in case we decide to cancel this trip at the last minute.

 

[ClaraOswald]

Right now...the June trip is still on. But it does make me super nervous! We are just over 60 days out. I should be excited but I just can't get to that point yet.

I booked our car rental for an SUV using reward miles. It basically saves us $315. I'll take it!

I need to call and book my dog's kennel. Also I need to order my Disney Visa rewards. And then a week or so before the trip we will likely buy our park tickets on Orbitz.

I think that's it. We don't plan on making any dining reservations or anything like that.

Am I forgetting anything? Plane tickets and hotel are already booked.

 

[VandVsmama]

I'm so glad that you're still planning on going!!

 

[Jaina]

Yay! I'm excited for you! It sounds like you've got all the official stuff covered! I forget, where are you planning to stay? Will you be driving or staying close?

 

[ClaraOswald]

We are staying at the Desert Inn which is right across the street. We stayed there in 2015 and the location was great. The beds were horrible though so I am hoping that doesn't make my RA pain even worse.

We are renting the car to get to and from the airport. And then we have 2 non-park days where we plan to see family.

 

[ClaraOswald]

So I called and booked the kennel for our dog. Almost $40 a night. Eek! But it's worth it since we really like this place. Still such a big chunk of money for 9 nights. Originally it would have been 10 nights. But since our flight doesn't leave until 1pm, we can wait and drop our dog on that morning.

I am starting to write lists for various things. So...here's a list of my lists....ha!

1. Things to buy before vacation
2. Things to buy at Target when we arrive
3. Toys and activities for the airplane
4. Toys and activities for the hotel
5. Things to pack in checked bag
6. Things to pack in carry-on bags
7. Things to do before we leave (put a hold on mail, order Visa rewards card, etc.)

As you can see....I love making lists.

I am thinking about ordering some autism shirts for my son to wear on travel days. That way if he is having a meltdown, maybe people will read his shirt and have some compassion.

This one is my favorite...

I can't decide on a second one. But this one is cute.

I also kind of want to get him this shirt to wear one day in the parks...(FYI - the puzzle piece is basically a symbol for autism awareness.)

They are all from Etsy so I'll want to order them soon. I just need to figure out the sizing.

I also ordered my son a bracelet from http://www.alertmebands.com/ and it should arrive this week. One side says he has nonverbal autism and the other side says he has a peanut allergy. He will probably hate wearing it so we have a couple months to try and get him used to it.

Last year I purchased him various Disney shirts and Kohl's, Walmart, and Target for him. I'm not sure when ones he'll wear in the park. Or even if they'll fit him now (I got them a looong time ago.) But later maybe I'll snap some pictures and upload them here.

Anyway...that's all for now! Less than 2 months to go....

 

[ClaraOswald]

I ordered the two autism shirts above (in blue and green) and I love them! Decided not to get the Captain American autism one at this time. Might get it just to have for fun later though.

We leave in 18 days. I plan to purchase our park tickets this weekend.

I need to put a stop on the mail, notify the credit card company, double check our room requests/credit card info with hotel....and I think that's pretty much it, besides packing.

I went through Henry's clothes and picked out 5 outfits for park days, 2 for non-park days, and then some extra outfits since he often goes through two a day. Then I basically did the same with my own clothes. I don't own that many pairs of shorts so I will have to wear some of them more than once but that doesn't bother me. I have more than enough shirts though.

I go back and forth between nervousness and excitement. I am mostly nervous about the travel days and about how Henry will do with being in the hotel room. He slept okay in the hotel last time but he was much younger and he was in a pack n play. We have inflatable bed rails. We plan to put him on the pull out couch but if that doesn't go well, he will probably sleep in one of the larger beds with my husband and I'll sleep in the other bed.

I have been watching wait times and plan to keep doing so until our trip arrives. I originally thought our non-park days would be Saturday/Sunday. But now I am thinking they will be Sunday/Monday. We shall see.

 

[Lauren in NC]

I am mostly nervous about the travel days and about how Henry will do with being in the hotel room. He slept okay in the hotel last time but he was much younger and he was in a pack n play. We have inflatable bed rails. We plan to put him on the pull out couch but if that doesn't go well, he will probably sleep in one of the larger beds with my husband and I'll sleep in the other bed.

We flew cross country with my autistic son when he was 3. Does he like playing games on a tablet? We had an old iPad loaded up with Sago Mini games and that thing was a lifesaver! We couldn't get him to wear headphones for any length of time, but we kept the sound low so we didn't bother the people around us.

I didn't read the whole thread, but in case no one else mentioned it, there's a disability access card you can ask for at City Hall. Basically, there are kiosks around the park where you can ask for a return time for various rides, which is given to you based on the current wait time (so if the ride has a 45 minute wait, they'll give you a return time for 45 minutes later - actually I think they take a little time off since you do end up waiting a little bit). My son has issues with standing in one place without stimming, so it was super helpful to be able to take him to a quiet area where he could eat a snack or running around flapping his arms without smashing into anyone!

We brought our jogging stroller with us (we drove) and it was a good place for him to retreat to if the noise/crowds became too much. In our jogging stroller, at least, the kid sits pretty far back and is nicely cocooned from the outside world. We also had a light muslin blanket we could drape over it if he needed to be completely cut off.

 

[ClaraOswald]

Yeah, we will definitely look into that pass if the lines are an issue for him. It's fantastic that Disneyland offers it.

We just have a regular stroller. Last time we used a visor extender for shade and we could kind of pull it down for him when he fell asleep. We have a different stroller this time. I need to check and see if the visor still works. That would help him get some darkness/quiet, I think.

He doesn't play any games on the tablet. He has a kids Kindle Fire and he likes to watch Little Critter books on it. Last time we put a video on for him on the plane and he threw up. So I am hesitant to use it. We'll see, I guess. We plan to give him children's dramamine beforehand, just in case.

 

[wide awake]

Maybe too late, but have you tried a soft brush to scratch his arms and legs while at the airport and during the flight? I did this w/ 26 year old DS on our last flight in April, and it helped a lot. I've always scratched his arms, back, etc... but the brush seemed to calm him down a lot more. He likes flying so that helps...and SW is pretty good about giving me free wine once they realize what I'm dealing with