Can I vent for a moment- More ? UPDATED post#26

[lovemickeya]

First of all let me start by saying-I know My problems are very, very small in this world we live in but.. I just dont know what to do at this point.

I just returned home form the doctor's appointment with DS6 with Autism. (I really like the doctor and I dont know if today was just an "off" day for everyone or what.)

So I take DS for 6 yr checkup and to also see what if the doctor will give us something/advice about our upcoming Disney Trip. After about 15 minutes of the idoit nurse trying to get him to take off his shoes(which doesnt happen until HE is ready) to weigh and stand on the growth chart AND she was trying her hardest to get a blood pressure with him SCREAMING "NO thankyou" - I finally get to take him to an exam room. So now DS is COMPLETELY upset and "his World" in a tailspin. All for the doctor to come in and somewhat check him out- try to push the FLU shot(I am one of those people that STRONGLY Believe that the Shots do have something to do with Autism) on me and tell me SORRY - I just needed to take all of his favorite things to calm him on the plane. NO Meds for us- we can TRY Benedryl (which by the way-DS got stung by a bee last week and we gave him benedryl every 4-6 hours and it didnt do ANYTHING for him).

So I am now - in this total panic about DS on plane and I just dont want to even go anymore- because I HATE to see him upset and I can only imagine the choas it is going to be for 2.5 hour plane trip. Any thoughts or tips for me and him for the plane trip would be GREAT!!

Sorry so long- just a little bit of a FREAKOUT Moment for me.

 

[Forevryoung]

I'm sorry that your doctor's appointment was upsetting and the staff was inconsiderate of you and your son's needs.

What about creating a social story to get him ready for the flight. That way he knows pretty much what is going to happen. The steps may include: taking the luggage out of the car, checking in, waving goodbye to the luggage (you have to wave goodbye so it comes back to you!), getting your plane tickets, walking through security, waiting for the plane, getting on the plane, sitting in the seat and taking off.

You might want a social story for when the plane lands as well that you can go over during the flight to get him prepared for that too.

Bring favorite toys/activities that are easy to replace (just in case something happens during travel).

Possibly bring a portable dvd player and a favorite dvd (or a new dvd that you know he would want to watch).

I dont know what he can and cant do- would he be able to follow a game like "i spy"?

I will try to keep thinking of ideas for you- let me know if there is anything else I can do.

 

[belle&beast]

I'm sorry that your doctor's appointment was upsetting and the staff was inconsiderate of you and your son's needs.

What about creating a social story to get him ready for the flight. That way he knows pretty much what is going to happen. The steps may include: taking the luggage out of the car, checking in, waving goodbye to the luggage (you have to wave goodbye so it comes back to you!), getting your plane tickets, walking through security, waiting for the plane, getting on the plane, sitting in the seat and taking off.

You might want a social story for when the plane lands as well that you can go over during the flight to get him prepared for that too.

Bring favorite toys/activities that are easy to replace (just in case something happens during travel).

Possibly bring a portable dvd player and a favorite dvd (or a new dvd that you know he would want to watch).

I dont know what he can and cant do- would he be able to follow a game like "i spy"?

I will try to keep thinking of ideas for you- let me know if there is anything else I can do.

You took the words right out of my mouth- social stories are great! Ask your school speech pathologist, I have books full.

Maybe if you're not too far away you can visit the airport. I know you won't get to see the planes take off and land like when we were kids, but maybe you can show him what to expect.

I also like the idea of a portable DVD player and favorite calming movies.

Another suggestion might be to buy some inexpensive new toys that you can give to him while on the plane and surprise him.

Lots of Hope you have a great trip!

 

[atta2wd]

I have an Autistic 13 year old and we leave on the 18th of this month for his first trip to Disney. I know he will do okay on the drive there but I'm not sure how he is going to react to all the visual and audio stimuli once we get to the parks. We are going with a group of almost 50 ppl for a whole week so I'm hoping he likes it. If not, we have plans to take shifts with him at POP....he likes TV and the computer so we'll have both ready just in case. It can be extremely frustrating when you want them to enjoy something as much as you do but you need to be prepared just in case they can not handle it. It took me a year just to get him into a Walmart without him having a screaming fit, you just have to take it a little at a time and give them a focus. We've been telling him for two months now that he was going to see Mickey Mouse and Cinderella's castle and he gets excited but I won't know until we get there whether he really understands how overwhelming it will be and whatever he decides to do will be okay with me.

Just remember.............you can not walk a mile in one step, you must take it one step at a time!

 

[hookedup]

I don't know what airline you are flying but when we flew AA and Delta this summer they were both GREAT. I told the gate agent ahead of time about my ds and she allowed us to pre-board, notified the flight crew about my ds and were very helpful. This did allow us to start off the flight a lot calmer and less stressed.
The portable DVD player with nice headphones was really a godsend. My ds also loves his Nintendo DS and that too can keep him calm for quite a while.

We did 2 long flights this summer - LA to Orlando and then Orlando to Puerto Rico and one really long one, Puerto Rico to LA non-stop. He did surprising well on all of them. He is quite obsessed now about airplanes though

 

[disneygal66]

My DS 6 is also autistic. I was freaking out too for our first trip last year on a plane and also first time at DW. His teachers made him a social story and he was really scared but we took his blankie, a DVD player and some Buzz lightyear toys and he acted like it was his 100th flight. My DH & I were both amazed at his behavior but he did very well. Sometimes they will surprise you. Maybe you can pick up some Disney items at the Dollar Store that he could play with on the flight. I know ours has some stickers, books and flash cards.

I also don't think your son needs a Flu shot. I am surprised that your dr suggested it. I am really sorry that you had a bad time at the dr. My DS hates going to his dr unless he is not the one getting looked at.

I hope your trip goes well and that you have a great time.

 

[lovemickeya]

Thank you ALL for your listening ears.

Sometimes I just need to be reminded that I am not the only one who has ever delt with this stuff before. Thank you!!


I will ask his teacher tomorrow to get a social story together so we can be working on it. DS is really into Skateboards right now so I have gone and bought him a Tony Hawk movie for his VideoNow- So hopefully with a extra set of batteries in hand we can get through the plane ride.

I really think that he will have a blast once we are there - but the plane and the bus are going to be the challenging parts of the trip.

Thank you again for all the & I really needed them today/week

 

[SueM in MN]

Sounds like you are much more calmed down now and have gotten a lot of good advice.
Hope you have a good trip and your DS surprises you.

 

[XYSRUS]

If he's verbal, which I think he is, ask him what he wants to take on the plane with him. My son like to make choices, and that, I have found, works best for us. If he gets out of hand with the requests, then narrow it down, and then let him decide. Good luck! Have a great time.

 

[JohnnySharp2]

Our son Joshua is 10 (his birthday was yesterday) and we have been to Florida from the UK 7 times so far with him, he is Autistic and also epilepsy - he is unable to talk although he can communicate in other ways and is fully mobile.

Our flights to the US are over 8 hours but we get by, take a few of his favourite toys etc - the one thing that really helps in addition to knowing we have a great holiday ahead of us is that Josh loves watching TV, so we bought him a portable DVD player with 3 batteries (enough for 9 hours).
We would be lost without it now and really feel it has been well worth the money.

When he was first diagnosed with Autism our 'specialist' was of no real help at all to us claiming Josh wouldn't play with toys or had no imagination - things that were just so untrue. He does get stressed sometimes or upset if we go to places that are unfamiliar to him, something that the medical people also didn't seem to understand and hence he proved difficult when they wanted to examine him.

Trust me the best people who know about these are the parents, not necessarily the 'experts'.

 

[SueM in MN]

I fell asleep knowing there was something I wanted to add, but could not think of what it was. I woke up during the night with the thing that was 'bothering' me.

Make sure that you social story includes removing his shoes for going thru security. It's supposed to be optional, but the TSA people sometimes make it difficult to not do it. If they want you to remove them and you don't, it usually is going to involve more screening. When we traveled in October, the rest of our family had to remove our shoes, but DD (using a wheelchair) didn't need to on the way to Orlando. On the way back, they asked for her shoes to be removed too.
The story should also include putting ALL your things into the Xray machine and that you won't be able to see them for a few minutes, but they will be OK and come out the conveyor belt at the end for you the same way they went in. Depending on your child, you may want to build in some extra time at the airport so he can watch the security process for a few minutes before getting in line.
I don't have time to look right now, but the Orlando airport has a good website and (at least the last time I looked), they had pictures of the boarding process for parents to use with their kids. They didn't include security, but the pictures still were good. You might want to check also to see if the airport you will be leaving from has pictures.

 

[shoegirl1020]

We took our ds7 to Disney in January and were very surprised at how well he did on the plane. I did back a backpack for both kids (dd9 and ds7) which had snacks and small toys I was able to get on clearance at Target. his included some bioncles (not a good idea trying to put together ion the air by the way ). the kids were not allowed to open their packs until 1/2 hour into the flight. Also, most important were snug fitting headphones (the kind they had around many years ago. We also took his VideoNow and Game Boy.

 

[karynnix]

I was worried about my son on the plane, too, but he enjoyed it more than I did! He liked getting a drink from the stewardess and a CD player with headphones was a lifesaver. He loved listening to Christmas music in March! I second the DVD player (or VideoNow) idea. Anything to keep their minds occupied. I know that he will have a great trip, and I can't wait to hear about how well it goes!

 

[dzorn]

DD did wonderful with her gameboy. It does help to have them pick out what they want to take. And them throw in a few new things you know they would like.

Denise in MI

 

[lovemickeya]

Again- Thank you all for your thoughts on this- I am MUCH more at ease knowing that I CAN get through this.

I talked to his teacher today and we should have a social story by Monday- I will email -Right away about adding that he will have to take off the shoes- That is a big step for him.

I can not thank you enough for the strength of knowledge and support THE DIS has given me. I feel confindent now that we will have a sucessfull trip and we will ALL enjoy ourselves.

 

[disney-super-mom]

Sounds like you have gotten some great advice, and you're on the ball about making sure his teacher includes removing his shoes in his social story (which sounds very important to include for your DS).

A VideoNow or portable DVD player - a MUST HAVE and a Godsend in my opinion.

Do you have any younger children? If so, then you'll probably be able to preboard the plane without any problem. If not, then you may want to bring a copy of his diagnosis letter (get one from the doctor if you don't have one already), and see if you can get approval to preboard.

Also, make sure to get a Guest Assistance Card once you get to the Disney park if you feel he needs one.

I hope you all have a wonderful Disney vacation! Stay strong - you're doing a great job!

 

[SueM in MN]

Also, make sure to get a Guest Assistance Card once you get to the Disney park if you feel he needs one.

I hope you all have a wonderful Disney vacation! Stay strong - you're doing a great job!

There is information in the disABILITIES FAQs thread near the top of this board about Guest Assistance Cards (GACs).

 

[marybrat]

When I first saw this post, I thought of social stories right away. It's so great to see that so many parents have used them successfully! I'm a speech pathologist and write social stories for students all the time.

 

[maynard]

just sending a little support your way! everyone else has already given all the ideas i had! have a great trip and let us know how it goes!

 

[TDS373X]

Don't know if the airport you will be using has the "puffer" machine security screening things where you go thru and lots of puffs of air are shot all over your body it's kind of like the metal detector that shoots air we encountered them in Indianapolis I went thru and then DDthen 6 ASD went thru and it freaked her out. I tried to go back to calm her and the TSA had a problem with that and they wouldn't allow grandma who was next in line to go thru until dd came thru and she didn't want to because they frightened her. She had flown to Disney 6 other times prior to this but it caught her off gaurd. You may want to add this to your story so he's not caught off gaurd..The social stories have worked well for us. I also have a travel backpack just for the plane for her. lots of new activities, books, games her gaming system and blankie and stuffed friend...she can not get into it until we are in the air and once we land she can't touch anything that's not soft and fluffy until we are back on the plane home.