card handouts for aspergers?

[CarolDel]

hi all,

a bit of advice please......

We ( Me, DH, My Mum & DS12, DS11 & DS10) are going to Orlando for three weeks (March/April). My eldest has Aspergers Syndrome and behavioural problems.

When he has a meltdown, he doesn't care & my hands are usually full trying to help him cope. What I am worried about is my "middly" DH(11) as he is at the age that he is painfully embarrassed when my Aspie DS goes into meltdown.

I know the poor soul is torn between concern and image, he hates it when people stare and make "helpful comments" and I was thinking of trying to make some small business card size cards to hand out to people if he/they do have problems coping etc.

It may just help people to "take a step back" if you know what I mean?

I just wondered if anyone has had experience of using these at the parks. I keep on trying to think of the message that I want to get across and want to keep it concise ( If anyone wants to ask questions, I am all for discussing it - but not when DS is in the middle of a meltdown )(LOL) but every time I attempt to put it on paper, I end up waffling - a bit of a problem with me as you can see by the length of the post

so, any input, suggestions would be greatfully appreciated

 

[SueM in MN]

I remember reading a long time ago that someone had posted that they used a card for their child with autism. I can't remember the specifics, but I know the mom had the cards to hand out when she was busy dealing with a meltdown and needed to deflect "advice" form others. I think they went on an autism website and got a consise "What is autism" statement from the FAQs. Thay also had the web address for the autism site on the card for people who wanted more info.
Also, I don't know if any of the Asperger/autism spectrim websites have boards for siblings, but I know some kids find those helpful because they can share with other kids who are going thru some of the same things they are.

 

[s&k'smom]

Hi I just wanted to offer my moral support. We took DS (who was then 6) to WDW last year. He did have one particularly good meltdown and we had to take a taxi back to GF because he wouldn't get on the monorail. My DD is only 2 1/2 but is affected when her brother has a major meltdown. The one time someone was "having issues" with my son I was about to give birth and said to the woman (rather sharply) he's autistic and we are doing the best we can. Well that shut her up. I've learned over the years to ignore a lot of stuff and just focus on getting DS calm. I commend your 11 year old for being so sensitive, he sounds like a good brother. Maybe just having some one on one time with each during your trip would help. Anyhow I hope you have a wonderful time.

 

[Poohnatic]

I recall someone mentioning them a while ago. You may want to check out Barb Kirby's site, www.aspergersyndrome.org. She has two excellent bulletin boards available and I'm sure someone can help you with the wording.

We've had people stare and make comments when DS was in full blown tantrum mode, fortunately, I was the one handling the tantrum and DH nicely commented, thanking them for their concern about how we parent our autistic child. If it were me, it wouldn't have been as pleasant.

There also is a mom's site...DH is reluctant to 'broadcast' the aspergers' when son is having a good day by wearing the shirts, but the pins are useful. It's a nonprofit, Sue, or I wouldn't put the link. www.momsonamissionforautism.org.

Good luck finding the cards. If you need simple cards printed, come up with how you'd like it worded and PM me. I've got tons of business card stock that I can make them.

Suzanne

 

[CarolDel]

Thanks very much for the helpful info and the support


I had read somewhere about these cards ( possbily on the OASIS site, but you know what it's like - so many sites... )coudln't find it again

S&K's mom, I am really blessed with my children, my youngest doesn't even bat an eyelid, and you can guarantee when eldest does "go off on one" they just behave so well, I am really proud


I am also really fortunate that my mum is able to come, so that means the wonderful ratio of one to one. so we will be really sure that they (and us) can all get one to one time with each other.

Thanks for the site info poohnatic - the 2nd one didn't seem to work, but I have come across the other site a few times in my web travels. so thanks for the steer in the right direction.

Oops I am rambling again, thanks again,

Carol

 

[chamonix]

well, do you need something to hand out while you are dealing with him, or do you need to find a way to make your other ds not so embarrassed while it happens? Because those seem like different things, perhaps.
I think you should just say what you wrote--"take a step back, please" or I would probably say something a bit sharper like "back off". When this has happened to me (thankfully dd hasn't had one of those tantrums in a year--cross fingers she has outgrown this autie trait) I have said to someone who made a comment that I didn't need at the time "Thanks, that's really not helpful right now" or a sarcastic "Thanks, that's really helpful!" They usually get it pretty quick; and of course, most people are trying to be helpful, really. Whatever you say, say it with a smile, and people will "get it" that you are doing the best you can too.

Now, maybe there are some things you could do to help the younger ds learn to deal with the embarrassment. I don't have too much advice on that right now, but maybe you could give him some tips, or just talk to him (at another time, of course) about just what it is exactly that embarrasses him, and maybe find a way for that to ease. I think I heard of a book for siblings of autistic kids, but can't think of the name. (my dd is an only child, so I didn't write down the book when I saw it) It's probably mentioned on some autism websites.
Maybe giving him a responsibility at that time will help--like, "when ds has a tantrum, I want you to take dd five steps away and sing a song with her to distract her" or "I want you to watch dd for me so she doesn't get lost while I deal with ds" or "I need you to grab the stroller and hold it still" or anything that will distract him and make him feel grownup and useful. Good luck. Just know that many of us have been there, and many of those "looks" that you are getting may not be rude stares of disbelief in your parenting, but looks of sympathy and concern for you since we know what it is like. {{{hugs}}}

 

[Michigan]

My oldest DD played on a challenged baseball team when she was younger and a Mother of an autistic child had business cards that she handed out that said …. While my Son’s behavior is not appropriate neither is staring, pointing or making rude comments. My Son is Autistic what’s your problem

 

[wvdisnut]

We just got back from our 3rd trip to WDW with our 18 yr old autistic daughter. Since she has become a little more difficult with tantrums and ugly behavior when not getting her way, we decided to order cards before going. We made them very simple and not defensive. Just the facts, like, "Our daughter has AUTISM. We are sorry for her poor behavior, and ask that you try to ignore it." Something like that. As it turned out, I could have used them 3 times, at MGM, but actually it was never a good time to do it as I would have had to hold people up in lines and such. She was ugly in the turnstall going in and out because she didn't want to program her Pal Mickey the correct way. The turnstall guy looked at her and I could only imagine what he was thinking, but it was just too congested to stop and give him a card. I can't remember the 3rd time, but it was equally too busy. In trips in years past, it would have been handy in maybe a few occasions, but not many. However, what was the most important thing we did do was get one of those red oval badges you can order here on DIS, (which we already had from our past trip), an took it to an engraving store in the mall, and put her name, our name, our hotel name, and "autism, sp. needs" on it. She got lost in MGM during a parade during our last trip, and we nearly lost our minds. We found her within about 5 min. She had just wandered after Jafar on up the street! The badge definately helped this trip. People made some exceptions for her without me having to say anything. She knew it was for if she got lost again. This time we returned to the spot at MGM where we found her and took a photo. This helped her understand the whole memory of being lost, which she still remembers. If we had to do over, we would put our cell phone number on it, instead of our hotel probably, as that would be quicker, wouldn't it? Have fun!

 

[CarolDel]

Thanks very much for everyones suggestions, there are a lot of good ideas given.

Thanks a lot

Carol

 

[cindysteve]

I have a 7 yo DD who is Bipolar : , and a 9 yo DS who has high functioning autism . When one goes off, the other follows suit. I recieved a tidbit in the unofficial guide for people with "Non-Apparent" disabilities that I intend to use this time. I would be interested to hear from others who have used this. The UG says to get a letter from your doctor explaining your child's condition, and what type of accomodations may be helpful to enhance your child's experience at Disney (or in my case to enhance the experience of the other guests around us as well). For example, if his condition impedes his ability to wait extended periods of time and causes sensory issues that may impact his ability to wait in line. And have the doctor ask in the note that they make whatever accomodations they can. Take the note to guest relations and they will give you a "Guest Assistance Card" which when shown to the CM will place you in a separate uncrowded waiting area.

 

[SueM in MN]

I recieved a tidbit in the unofficial guide for people with "Non-Apparent" disabilities that I intend to use this time. I would be interested to hear from others who have used this. The UG says to get a letter from your doctor explaining your child's condition, and what type of accomodations may be helpful to enhance your child's experience at Disney (or in my case to enhance the experience of the other guests around us as well). For example, if his condition impedes his ability to wait extended periods of time and causes sensory issues that may impact his ability to wait in line. And have the doctor ask in the note that they make whatever accomodations they can. Take the note to guest relations and they will give you a "Guest Assistance Card" which when shown to the CM will place you in a separate uncrowded waiting area.

if you look around at this board a bit (go to the bottom of the page and you can find links to recent past pages), you will find threads with GAC in the title. That's the abbreviation we use to avoid typing out Guest Assistance Card each time. There are a lot of DIS posters on this board who have used GACs.

This thread has quite a bit of information about dealing with autism at WDW.
If you get a doctor letter, keep in mind that the CMs are not medical people, so the letter should be written in plain language that a lay person can understand. Also be specific; "he can't wait in line due to sensory issues" may make perfect sense to someone else with a child with the same condition, but it may not mean anything to the CM. They need to know what sorts of things are a problem - is it being close to a lot of people and what happens (he begins yelling, hitting, etc).