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]

:grouphug:

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]

:grouphug:

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 :grouphug: 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.:goodvibes

[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 :grouphug: & pixiedust: 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 :rotfl: ). 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! :thumbsup2

[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.

:disrocks: :thanks: 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.

:thumbsup2

[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). :thumbsup2

A VideoNow or portable DVD player - a MUST HAVE and a Godsend in my opinion. :thumbsup2

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!:sunny: :grouphug:

[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!:sunny: :grouphug:
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]

:grouphug: 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.

[SueM in MN]

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've never heard of those. I think they would freak out a lot of people.

[Forevryoung]

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.

:wave: Future SLP here (1st year grad student). That's why I thought of them!

[Goofyluver]

I agree with the idea of the social story. Although my son has not been diagnosed with autism, he has other things that he is dealing with. We have been told that it is possible that he falls somewhere within the autism spectrum. I used a social story for him when he was getting his tonsils removed, worked wonders!! I'm also an SLP and I have used social stories with students.

My son's first trip on a plane went pretty well. He was four. He had severe auditory sensitivities. I found that a pair of gun headphones (used in shooting) worked to block out a lot of the noise on the plane which really bothered him. I know everything will go well and you'll have a great time!! :yay:

[cinda-wella]

I just wanted to say, I feel your pain...some doctors just don't get it. There was a point where I had to get my son on a medication, but what a fight it was to get him some help- his regular pediatrician didn't want to touch him, and the wait for his neurolgist was 2-3 months :guilty: which in autism-land is an eternity :badpc:

I can only imagine how I'd feel if while I was trying to get my son some help, I was getting a flu shot pushed on me , too. The doc's sometimes need to walk a day in the life :stir: .

My son needs benadrly from time to time also, due to severe food allergy, but it can make him nutty once it wears off. Not what I'd want on a plane , at least for my son. BTW- what kind of reaction did your ds have to the bee sting, that the benadryl wouldn't help? That kind of concerns me being as how my family relies on that sometimes..thanks!

Good Luck!

:wave2: me :surfweb: dh :artist: ds (10) :yay: ds (8) princess: dd (2)

:banana: 3 more weeks till WDW!! :cloud9:

[lovemickeya]

BTW- what kind of reaction did your ds have to the bee sting, that the benadryl wouldn't help? That kind of concerns me being as how my family relies on that sometimes..thanks!



The Benadryl did help with the bug bite. (We are not sure it was a bee) But whatever it was got DS on the eyebrow so when the benedryl started to wear off it was red, and swollen - so we gave him the benadryl to stop the itching/stinging and he would leave it alone.

When is your family going to Disney World? We leave on the 8th of December.

[lovemickeya]

I have gotten a social story together and we are going over it daily. I also have put away some of his favorite things so I can pull them out in case of a crisis.

I was just wondering if any of you have ever used Dramamine- the nurse from the doctor's office called and said that if I didnt want to use benedryl that I could give him a dose of Dramamine. Since that will help with the upset stomach and possibly make him calm- chilled out. I just have never heard of any giving their children Dramamine before. Granted I MUST take it for long car rides or if I am going to be in the back seat of a car for any length of time.

Let me know what you think- Dramamine, Benedryl or NOTHING-

Thanks again from the bottom of my heart for all your input and suggestions along the way- we have 9 days till we leave it is crunch time.

[disneydenisel]

We just returned from our trip to WDW with our two HFA kids, DS4 & DD7.

For the plane rides, we brought Game Boys/DS (2-3 new games), DVD player (with new movies they have never seen), DH's laptop with PC games, markers, paper, magazines (Nickelodeon), special snacks, blankies, small toys, WaterWow tablets, etc. We also were able to declare our DD7's lemonade in small bottles (2) and we brought backup Countrytime powdered drink mix which we used to refill. We did prepare for TSA throwing out our bottles, but they didn't. We had a doctor's note & had our Maclaren Major Special Needs Push Chair/Stroller.

Are you only worried about the airport? I was "puffed" one time (2005) because DD7 walked back through the detector, and TSA requires that someone be puffed after that, so I volunteered since it would have totally freaked out DD7 and the TSA person agreed that it was okay to substitute me.

Does your DS6 get around with no problem? Our DD7 tends to bolt or wander, so having the stroller was very helpful. She also felt very safe there at the airports and in the parks. We were able to see a lot more of the parks because of the stroller and the fact that she could just sit and wait/play her DS before a parade started. I was able to roll it onto the ferries & monorail, but I had to fold it up for the buses.

We had a 5.5 hour flight to MCO, and 2 flights home, with a 4-hour layover in DEN. DD7 was pretty upset during that final flight...she was tired, bored with everything, and wanting to get home. She cried a lot, and there wasn't a lot we could do to console her. I'll search for a better connecting flight next time.

Have a great time!

[lovemickeya]

DS gets around fine- He is a bolter too but he does really really well on the backpack leash thing. So we use that - we are not taking our own stroller but we will most likely rent one when we get to the parks. We figure with both(DS6 autism & DS7) of the boys someone will want to sit.

I too have a letter from Doctor- I am more concerned with the airport and flight than the actual parks & rides & hotel that sort of thing. I feel that once he is out of the confinded spaces of the airplane that he will do fine- now coming home might be a different story. He might not want to get back on the plane - but I guess we will cross that bridge when it get here.

I was wondering - disneydenisel - do you give your children anything for the flight(benedryl or dramamine)?

[disneydenisel]

I was wondering - disneydenisel - do you give your children anything for the flight(benedryl or dramamine)?

Great to hear that your son gets around fine. My DD7 has low muscle tone and can't walk for long periods of time without giving up.

We haven't given our kids anything for the flights. Last year, we did many social stories (DD7 has severe anxiety disorder, too) and our psychologist talked with DD7 about how to calm herself on the airplane. She did great to MCO but on an earlier trip to Hawaii in 2005, she was yelling "Turn the plane around," for a few minutes & then crying a lot before she settled down. That, and she was kicking the back seat of the airport van driver who picked us up at home (my mistake, I ordered the cheap-o van service versus the sedan/limo).

I've never thought of using medicine, but Benadryl would definitely knock my kids out for at least 2 hours.

[MommytoMJM]

I have gotten a social story together and we are going over it daily. I also have put away some of his favorite things so I can pull them out in case of a crisis.

I was just wondering if any of you have ever used Dramamine- the nurse from the doctor's office called and said that if I didnt want to use benedryl that I could give him a dose of Dramamine. Since that will help with the upset stomach and possibly make him calm- chilled out. I just have never heard of any giving their children Dramamine before. Granted I MUST take it for long car rides or if I am going to be in the back seat of a car for any length of time.

Let me know what you think- Dramamine, Benedryl or NOTHING-

Thanks again from the bottom of my heart for all your input and suggestions along the way- we have 9 days till we leave it is crunch time.

Dramamine is essentially Benadryl...

From Wikipedia:

brand names Dramamine and Gravol) is an over-the-counter drug (http://en.wikipedia.org/wiki/Over-the-counter_drug) used to prevent motion sickness (http://en.wikipedia.org/wiki/Motion_sickness), (emesis (http://en.wikipedia.org/wiki/Emesis)). It is closely related to diphenhydramine (http://en.wikipedia.org/wiki/Diphenhydramine) HCl, or Benadryl.

[mommyandmore]

We were really worried about my son (5 years old with traumatic brain injury- lots of different disabilities) on our Thanksgiving trip to Disneyworld since we were traveling from CA so quite a long ride. I actually did a trial run with both Dramamine and Benadryl a couple of weekends before we left- one on Sat and one on Sun. He usually naps around 1pm-4 pm so what I did was gave him the med at around 9am and tried putting him down for a nap around 10. Benadryl didn't have any effect on him and with the Dramamine he did sleep but he was very crabby before hand. So I brought Dramamine to use just in case. We did end up giving it to him once on the way there when he was obviously tired but not settling down for a nap and it worked like a charm. Other than that, he was actually pretty easy on the plane. He is big into lining cars and little figures up so I gave him some new cars and he used the tray on the airplane and was entertained for hours at a time. The REAL issue we had was with the airplane bathroom. We were on the plane for 6 hours and he is still potty training so he has to go several times. The first time I tried to squeeze in with him and shut the door and he ended up peeing all over the place because I couldn't get him positioned right (I kind of have to hold him on the toilet because of his muscle weakness/cp)> After that, I just kept the door open but I don't know how you would cope with older kids- those bathrooms are TINY if your son needs help in there.
Katrina

[lovemickeya]

Ok I got the dramamine- we are going to try a "trial run" this weekend (going about 45 minutes away to a Christmas tree farm) and see how it goes- which should be interesting since he HATES to take meds. I wonder how awful the taste of the pill is disolved since he only gets 1/2 a pill -- ummm- I am going to have to keep thinking on how I can "trick" him into taking it- and then I will have to fool him again at the airport- break out the Mommy Manuals for this one- LOL

I will keep all of you guys posted.

[flying_babyb]

apple sauce! You stick in there and let him eat it, Most of the time it works well for pills. My sister does this with g-ma all the time and they do it at the school where my mom works (special ed).

[lovemickeya]

OK We leave in 3 Hours!!! I am so excited

- I did a trial run with the dramamine last weekend. I just cut the pill in half and stuck it in a doughnut hole. He feel for it hook, line and sinker. So I am stopping to get doughnut on the way to the airport and we will do it again. He never went to sleep but it did calm him down alot, which is all I was asking for.

Thanks again for all the advice- I will post when we get back.