Autism meltdowns

[sleepingbeautymama]

My DD4 has sensory issues and is on the Autism Spectrum,(not officially diagnosed, possibly Asperger's Syndrome). Lately she has been having a lot of meltdowns to the point that my own family admitted that they've been avoiding coming around. I'm being blamed and then of course I'm told "DO SOMETHING ABOUT IT", like I'm not trying. Does anyone have any advice on how to shorten her meltdowns and help her calm down? Alot of times these happen in the car or when we are out shopping or eating and honestly I'm becoming very nervous about even going to WDW. It's so unpredictable that I can't prepare for it. Yesterday for example we went out for ice cream. Usually there is a girl there that gives her her ice cream. Well this time is was a man and my dd threw a fit and wouldn't calm down, and didn't want the ice cream. She becomes very obsessed with things and right now it's pacifiers and strollers so if we go out and see a baby with those, she has a huge meltdown. As you can imagine, I'm sure we will see this at WDW and I'm not sure what to do to make her not worry about these things. I'd appreciate any ideas. I'm just exhausted over this and don't know about this trip.

[pambo'shouse]

Has your daughter been evaluated by a certified sensory intergration therapist?

[sleepingbeautymama]

She's been evaluated by the state through the birth-3 program and then most recently through the school special services. We are finally in contact with Riley Hospital's Autism center but haven't heard back and I hear the wait is very long. I feel helpless at the moment because I'm not sure where to go to for help other than to wait on what happens at Riley.

[ctbasketlady]

I know there are good links out there and hopefully some of the parents who use them can post.

I work with 3 & 4 year old autistic children in a classroom setting.

A typical social story would be:

Samantha likes to go to the icecream shop

Samantha likes vanilla icecream

This is the door to the icecream shop

There are many people who work at the icecream shop

Sometimes a boy gets Samantha's vanilla icecream

Sometimes a girl gets Samantha's vanilla icecream

It is okay for a boy or a girl to get Samantha's icecream

Samantha is happy

Take photos to describe each sentence above. Put each event on a page with the applicable picture. Have your daughter read it before/during/after your visit to the icecream shop. Eventually she will "get" that its okay to have someone else help her without the melt down.

This works for ANY situation she may need help dealing with.

Hope this helps

[melomouse]

Social stories are a good idea.

Not sure I have specific help for you, but DDS is now 14 and as he got older, and with all of his services, the meltdowns diminished and then all but disappeared. So have faith and hope! It WILL get better.

But it was at your daughter's age that I stopped going to overstimulating places like the supermarket with him. He has always done great in WDW for some reason because life is non stop there. But a simple trip for ice cram or a birthday party could turn into meltdown unless I rehearsed the event with him. Still, you cannot plan for all variables.

I really just wanted to send you a hug and my support and understanding. Very tough being an ASD mom!!!

[kmjmom]

I would echo the previous posting regarding the social story. As a special education teacher, I have the pleasure of teaching children with a variety of strengths and challenges. I have found social stories to be a very positive and effective way to ease a child's reaction to situations that challenge them. I use a digital camera to allow my student to be the star of their social story. If it is a difficult topic to photograph, I have found Microsoft on-line clip gallery to be useful also. I am always in awe of the positive progress that my students make each year. I wish the same for your child! :teacher: :thumbsup2

[sleepingbeautymama]

Thank you all for your replies. The social stories sound like a good idea. ctbasketlady thanks for the ice cream story. I'm definitely going to use it the next time I take her out for ice cream.

[karynnix]

I prepare my son for every little thing that could happen. He has had meltdowns in some of the absolute WORST places! I found that if I sat down (where ever we were) and turned him towards me and just held him tight, that he would usually come right out of a meltdown. I would pin his arms down and just squeeze him tight. That kept him from hurting himself and it let him know that I was in control of the situation. I have done this in the middle of Wal-Mart, in "The Land" at EPCOT, in the hallway at church...you name it. It only took a few months for him to come straight to me when he felt a meltdown coming on and "assume the position". I needed for him to learn that he could come to me when he got upset. It worked for me!!

[wvdislover]

Sometimes when my DD has had a meltdown, I find it works well to just let her cover up with a blanket or something else. She calms down really well with this. It's something that wouldn't be difficult to do in many places and not be too obvious, since she's still so young. Good luck!

[SueM in MN]

One of the things that a lot of people have written was helpful at the parks was using one of the WDW park strollers and a blanket. The strollers at all the parks except the Studio are made of a firm (not hard) plastic. The sides are fairly high and solid and the top has a canopy that covers well. A lot of people have posted in the past that their children with autism spectrum really like those 'features' of the strollers. With a blanket that can be draped over the top, it's possible to really cut the stimulation.
Deb Wills' site has a page with pictures of the strollers. (http://allearsnet.com/pl/strol_faq.htm)

Also, you can request a Guest Assistance Card that would allow you to bring your stroller into lines like a wheelchair. There is information about that in the disABILITIES FAQs thread.

[jaycns]

My now 5 year old ds was diagnosed with SID about 2 and 1/2 years ago.

First, with the proper help and a good therapist, GREAT GREAT GREAT strides can and will be made!! Just take a deep breath, *maybe buy some ear plugs*, and grit your teeth.

My son was a walking melt down for about 5 months when he was about 2 and 1/2 years old. If we would go into a resturant, he would SCREECH at the top of his lungs, crawl under the table and scream some more. Even a trip to the park just found him standing there crying instead of playing on his favorite equipment.

However, all of those problems aside, Disney has always been a positive thing with him. He is very into Disney movies. Seeing the characters he is comfortable with help him react well at WDW. I order the free planning videos and have asked other DISers for photos of resort, the ships, attractions, shows, etc. We spend hours going over photos together, listening to sound tracks, watching the planning video and talking about what will happen at WDW. I also show him the pictures at allearsnet and here at the DIS boards to get him used to what we will be seeing, where we will be staying and what we will be doing. Also, we have used his stroller as a "safe spot" for him (suggested by his therapist, to make vacation easier, give him a safety zone that you can take with him so that he always has a way to control the out of control sights, sounds, smells, etc coming at him way to fast for him to process). We put him in the stroller, give him his favorite Crush stuffed animal and a cold drink (he is easily refocused on cold things now, he wasn't always but now he is), face him towards one of us and try to get him into his own zone.

I think the most important part of preparing for him to have a good vacation was just going over and over and over photos and videos. Some of the Disney Sing Along Song videos feature the parks and water parks and really helped him as well.

After just over two years with a therapist he is doing so well you don't know he has issues close to 90% of the time. He is really making progress in leaps and bounds. It was hard to see the progress at first. It felt like months of pounding my head against the wall (watching him do basically the same thing) with no real progress to show for it. But looking back, the strides were being made even then.

I hope some of these suggestions work. Hang in there. Your dd will improve. She is very lucky to have a mom like you who is willing to see she has a real problem and get her some real help...and you are very lucky to have such a speical little one!! :)

Enjoy your vacation!!

[momof3disneyholics]

My 6 year old son seems to have "switches" that make his meltdowns turn on and off like a switch. When we are at home what works is giving him a bath. When we are out in public, I bring candy or give him a balloon. That always seems to work.

[Tissa]

I don't have any better advise that has been given so far I just wanted to send my support and well wishes. Even though my family doesn't admit to avoiding us sometimes I can tell they do. I can't blame them, I'd probably avoid us too. When we are at home and he has one I put him in my room which is real dark and make him lay down in my bed and he isn't allowed to come out until his fit is over. It usually only takes about 3 minutes for him to calm down then he comes out and gives me a hug or he falls asleep.

[seven dwarfs]

Just know that you are not alone. Also know that it is so hard for anyone to understand you and yours. People who do not experence a meltdown have no clue. My sons therapist showed me pressure things to do, exp have him hug himself tight. pushing hands against each other. Lots of small things to do when you see him starting the meltdown. This has worked for us. the story idea is great as well. Just know that I still question myself and get frustrated about what I am doing wrong. Sometimes I have to set back and realize I am not doing anything wrong. The best place to get support is from people who have some of the same issues. You can not always control a meltdown or stop it. It is just not that easy. I hope all these post help you. Good luck with your daughter.

[Ishy]

Services and therapists are hard to find when you can't get the child diagnoised. The older they get the harder it is... I did not go anywhere that could trigger a meltdown for years. My son is very smart and we have reached a point in between melt downs that I can talk to him about how much of life he has missed because of our struggle with meltdowns. We are working on building 'coping' skills now - Its tuff when you see they understand enough to internally struggle to control it.

I have no anti-meltdown triggers. No green kryptonite. A lot of times we just decide we need a break, it includes splashing cool water in the face, perhaps a treat -making him get the treats- (oh I get beat up for rewarding the wrong behavior) and 10 minutes to get over it.

We did a year with an occupational therapist when he was 7 - brushing and heavy work. I think your daughter might be old enough to understand the stories and perhaps take on a responsibility while out. Like placing the order, or paying for it, or making sure we all have napkins. Meltdowns in school disappeared when he had 'routine jobs and class responsibilities' ... structure and boundries and rules, he thrives - the unexpected is what un nerves him.

hugs hugs hugs.

suzy/ishy

[twojo21]

a weighted blanket has always helped my brother.

as for wdw take your time & go back to the hotel as needed.

[Napria]

My son went undiagnosed till last year when he was 8 1/2. He is a perinatal stroke survivor and epileptic, and his behaviors were attributed to those two things, as well as his own innate personality and our "bad parenting skills." Nice how parents of neurotypical children, as well as the schools, can judge, huh? He now has an official Asperger Syndrome diagnosis.

Well, the socials stories were the holy grail for the school when he started having sensory overload at lunchtime. They made one up and read it to him throughout the day. Our bedtime reading was changed to always be that social story. Did it help? Not one bit. He was overloaded by the noise and commotion of the cafeteria and his behaviors were an escape mechanism. I asked whether he could have a quiet place to eat, and they said no, because if they did that for him, they'd have to do it for the other kids who didn't like the noise of the cafeteria. Not long after that they sent a note home saying that he was going to be punished by making him take his lunch in the assistant principal's office because he had blown a straw of milk at a visiting grandparent. Nothing like reinforcing behavior by giving them what they want.

What has helped for us is recognizing the ABC's of behavior: Antecedent, Behavior and Consequence. With my son, waiting to rely on the consequence does not work. Recognising the antecedent (or trigger) and redirecting helps. So does talking over potentially problematic situations before he encounters them. It takes a little practice to recognise these situations, but soon I got the hang of it.

Also, each kid is unique, no matter what their diagnosis is. No two Aspies react the same to the same situations or the same methods of handling those situations. The best plan is to find out what triggers your own kid and prepare her before she encounters those situations again. Also, trying to keep everything positive has helped tremendously for us. My son is aware that his behavior causes problems and would rather be a "good kid", but often can't help himself if the situation gets past a certain point. He looses self-estem when he is repeatedly being punished. Saying to him, "I know you're not going to throw that toy because you're a good kid and you know it could hit someone." (he loves the feel of throwing things) is better than, "Don't throw that or you're going into time out!" I can guarantee that he will throw the toy after the second statement.

Good luck. Try googling "Positive Behavioral Interventions" and "Positive Behavioral Intervention Strategies" and stay positive yourself. When you have a hard time keeping your chin up, just remember that everything is a phase and what is difficult now won't always be.

One last thing... We are going to Disney World in October for the 4th time in 5 years with the kids. One thing that helps us all is that we have an RV. Wherever we go, my son has his room, his bed and his things each night, morning and anytime he needs to take a break. It might not seem like a big thing, but for him it works wonders in enabling him to re-center and calm himself in a very comfortable, familiar place after being overwhelmend by all the sights, sounds and motions.

[Cass]

What happens after a meltdown? Like, after the unsuccessful ice cream trip, does DD say she is sorry or feels bad about crying? or is it like she doesn't even realize what happened.

I don't have any answers for the OP but just wanted to you to know I really feel for you and can appreciate how stressed you must be feeling.

[disneygal66]

I totally know what you mean. My DS6 can have meltdowns at the drop of a hat and for no reason (at least we haven't figured them all out). I just Love :rolleyes: the way people (even someone's own family) look at you like you should just stop this now. If we could, don't you think we would?!! I certainly don't want my son to scream and be upset and I don't like listening to it either. I have found that wrapping my arms around him tightly and talking to him quietly works for him sometimes. I hope you find something that works for both of you.

You have my admiration and prayers!:grouphug:

[lovemickeya]

My ds, 5, austism spectrum- has a set of headphones that block out all the sounds (used for hunting) and they have been a life saver. The meltdowns are alot fewer now- thank goodness and we also have a small blanket that goes in the backpack with us at all times - that helps to "hide him" for the choas.

Hope this helps-

[hookedup]

I, too, feel your pain. There have been times when my son has had a nuclear meltdown (and I reserve that classification of meltdown for very special meltdowns) and I have felt like sobbing myself. What an awful feeling it is when your child is enraged, out of control and freaking out.
Meltdowns are a hard one because it is hard to know what will trigger something. Every child is different and so you never know what a new day will bring.
Sensory kids are always close to a threshold because they are dealing with so many stimuli just trying to sort it all out and process it. Then when something pushes them over that threshold (and it could be something very random seeming to us) they meltdown because they just can't deal any more.

Try to offer some things to calm prior to the melting point - depending on the sensory needs of your specific child. Weighted blankets or vests do work great if that meets your kid's sensory needs. Earplugs, or headphones or just some time to chill is good. Social stories are a teaching tool, unfortunately they don't help during a meltdown! They can be useful for certain situations to help teach what to expect but don't help calm a child on overload.

We have had great times during our Disney trips - minimal meltdowns.

It will get better - there is hope - hang in there!!!
:)

[playwright]

Hugs to you and everyone here. I wish I had the answers. If maybe this hopefully makes you feel any better most of our relatives avoid us like the plague too. I try to tell them all the nice things about DS, but they don't want to hear it. You're not alone.

[MidgeD79]

Last night at the county fair (our 3rd night there) ds 8 with asppergars had a melt down when I told hom no more carnival games (we had agreed on 2). He had a meltdown and attacked me. I tried to hold him but suffered bloody legs and scratches/bruises. Older dd (25) went to get some help. No one offered to help or ask if I needed help. I had tears streaming down my face from the pain. I wanted to take him out of the fair, but it was physically impossible. My dd came back with a police officer (20 min later) who got ds away from me and calmed him down quickly. DS just needed someone to break the "trance" he seem to be fixated on which was me. We walked to the car and he was fine. He asked if I still loved him and could he hold me. I told him I loved him, but I hurt to much for him to hold me. If this is how he is at 8 what do i do at 12? I know there are other families out there, but last night I was very much alone.

[disneydenisel]

My DD6, autistic (among other things) also has meltdowns, but much less now than before. It used to be that even taking a different road home from school would cause her to scream and cry. A different bus driver, something out of place at the hairdresser, too many choices, changes in schedule...all of these cause meltdowns. It is difficult to reason with her when she is falling apart (obviously), so we do our best to prepare her for changes and try to encourage her to "be flexible." Life is so unpredictable, there is no way to know what will happen. There was a broken vending machine at a rest stop on one of our road trips and she freaked out for 30 minutes.

We finally decided that something else was going on besides autism, sensory integration dysfunction, low muscle tone, verbal apraxia, gross motor delays, and seasonal affect disorder. DD6 also has anxiety disorder, so she sees a psychologist once a week to talk about what makes her panic and anxious about many things. This has helped some, but there is still a long way to go. At least she can verbalize now and once she is calm, she can explain to us why she was upset.

On a positive note, we took our first trip to WDW with her and my DS4, also autistic. I was thinking it would be awful, and in fact, they had a good time. Okay, so DD7 would only go on ONE ride during the whole week, and mom (me) had to stay with her while dad and DD4 rode a lot of rides, but she had fun, and asked to go back! I was amazed! She loved the parades and tolerated the crowds and loved the buses. So we are going back in November. It's a lot of money to spend on tickets to not ride any rides, but I am focusing on the positive! I only have to figure out how to get around with her...she's 75 lbs and 4 feet, 4 inches. Last year, I pushed her around in stroller and she was 65 lbs. I doubt if the wheels will move this year...

Anyhow, you are not alone and we are all going through similar things. There are a lot of typical kids at WDW having meltdowns all day long...ours don't look so different in comparison.

Social stories have worked well for us. Careful planning, visual schedules, keeping the routine close to what happens at home, packing favorite and special toys. Bribery when desperate (I bought a few large Disney toys to keep her in the parks when we were there, waiting for DH and DS4) works too, although I do less of that when we are home.

[sleepingbeautymama]

I really appreciate all of you for all your advice. We are going through a very difficult time with our dd right now. I think dh is not taking it very well at all. He's having a hard time dealing with it and won't even speak to me about it. He just becomes angry. He told me he was done dealing with her behavior and doesn't want to go on the trip. I have given him a couple days to calm down but did have to remind him that I need to pay off the trip in a couple of days and asked if it was okay to pay for it and he said he wanted to talk about things first. I'm so afraid he's going to refuse to go on this trip. I really don't want to cancel and I know my dd is looking forward to it, regardless of the difficulties she has.

What happens after a meltdown? Like, after the unsuccessful ice cream trip, does DD say she is sorry or feels bad about crying? or is it like she doesn't even realize what happened.

I honestly don't think she feels sorry or bad about crying. When I try and talk to her about things she really doesn't seem to understand or get what I mean.

My DD6, autistic (among other things) also has meltdowns, but much less now than before. It used to be that even taking a different road home from school would cause her to scream and cry. A different bus driver, something out of place at the hairdresser, too many choices, changes in schedule...all of these cause meltdowns. It is difficult to reason with her when she is falling apart (obviously), so we do our best to prepare her for changes and try to encourage her to "be flexible." Life is so unpredictable, there is no way to know what will happen. There was a broken vending machine at a rest stop on one of our road trips and she freaked out for 30 minutes.

We finally decided that something else was going on besides autism, sensory integration dysfunction, low muscle tone, verbal apraxia, gross motor delays, and seasonal affect disorder. DD6 also has anxiety disorder, so she sees a psychologist once a week to talk about what makes her panic and anxious about many things. This has helped some, but there is still a long way to go. At least she can verbalize now and once she is calm, she can explain to us why she was upset.

This sounds exactly like my dd and I do believe she has some anxiety issues also. I feel so bad for her because it's hard for me to understand why a 4 year old would feel this much anxiety. It makes me sad.

Last night at the county fair (our 3rd night there) ds 8 with asppergars had a melt down when I told hom no more carnival games (we had agreed on 2). He had a meltdown and attacked me. I tried to hold him but suffered bloody legs and scratches/bruises. Older dd (25) went to get some help. No one offered to help or ask if I needed help. I had tears streaming down my face from the pain. I wanted to take him out of the fair, but it was physically impossible. My dd came back with a police officer (20 min later) who got ds away from me and calmed him down quickly. DS just needed someone to break the "trance" he seem to be fixated on which was me. We walked to the car and he was fine. He asked if I still loved him and could he hold me. I told him I loved him, but I hurt to much for him to hold me. If this is how he is at 8 what do i do at 12? I know there are other families out there, but last night I was very much alone.

My heart breaks for you. I started tearing up reading this. My dd4 also does these things to me or if not me she trys to hurt herself and I really do worry about how I will control her when she's older and bigger.

Again I appreciate all your replies. I feel better knowing I'm not alone but then of course I wish none of us had to go through this.

[lovemickeya]

This is long but... THIS HAS BEEN A GODSEND FOR OUR FAMILY AND FRIENDS- TO HELP GET THEM TO UNDERSTAND WHAT IS REALLY GOING ON WITH MY SON. SO I THOUGHT I WOULD PASS IT ALONG AND MAYBE IT COULD HELP YOU BETTER EXPLAIN SOME OF THE "MELTDOWNS". (I am sure that some of you might have seen this before)

TEN THINGS EVERY CHILD WITH AUTISM WISHES YOU KNEW:
1. I am first and foremost a child -- a child with autism. I am not primarily "autistic." My autism is only one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)?
As an adult, you have some control over how you define yourself. If you want to single out a single characteristic, you can make that known. As a child, I am still unfolding. Neither you nor I yet know what I may be capable of. Defining me by one characteristic runs the danger of setting up an expectation that may be too low. And if I get a sense that you don't think I "can do it," my natural response will be: Why try?
Sensory integration may be the most difficult aspect of autism to understand, but it is arguably the most critical.


2. My sensory perceptions are disordered. This means that the ordinary sights, sounds, smells, tastes and touches of everyday that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you but I am really just trying to defend myself. Here is why a "simple" trip to the grocery store may be hell for me:
My hearing may be hyper-acute. Dozens of people are talking at once. The loud speaker booms: today's special. Cash registers beep and cough, a coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can't filter all the input and I'm in overload!
My sense of smell may be highly sensitive. The fish at the meat counter isn't quite fresh, the guy standing next to us hasn't showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they're mopping up pickles on aisle 3 with ammonia.I can't sort it all out; I'm too nauseous.
Because I am visually oriented (see more on this below), this may be my first sense to become overstimulated. The fluorescent light is too bright; it makes the room pulsate and hurts my eyes. Sometimes the pulsating light bounces off everything and distorts what I am seeing -- the space seems to be constantly changing. There's glare from windows, too many items for me to be able to focus (I may compensate with "tunnel vision"), moving fans on the ceiling, so many bodies in constant motion. All this affects my vestibular sense, and now I can't even tell where my body is in space.
Receptive and expressive language and vocabulary can be major challenges:


3. Please remember to distinguish between won't (I choose not to) and can't (I am not able to).
It isn't that I don't listen to instructions. It's that I can't understand you. When you call to me from across the room, this is what I hear: "*&^C@, Billy. #$uSPAN>*&^Famp;*" Instead, come speak directly to me in plain words: "Please put your book in your desk, Billy. It's time to go to lunch." This tells me what you want me to do and what is going to happen next. Now it is much easier for me to comply.


4. I am a concrete thinker. This means I interpret language very literally. It's very confusing for me when you say, "Hold your horses, cowboy!" when what you really mean is "Please stop running." Don't tell me something is a "piece of cake" when there is no dessert in sight and what you really mean is "this will be easy for you to do." When you say "It's pouring cats and dogs," I see pets coming out of a pitcher. Please just tell me "It's raining very hard."
Idioms, puns, nuances, double entendres and sarcasm are lost on me.


5. Please be patient with my limited vocabulary. It's hard for me to tell you what I need when I don't know the words to describe my feelings. I may be hungry, frustrated, frightened or confused but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation or other signs that something is wrong.
Or, there's a flip side to this: I may sound like a "little professor" or movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits because I know I am expected to respond when spoken to. They may come from books, TV, the speech of other people. It is called "echolalia." I don't necessarily understand the context or the terminology I'm using. I just know that it gets me off the hook for coming up with a reply.


6. Because language is so difficult for me, I am very visually oriented. Please show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of consistent repetition helps me learn.
A visual schedule is extremely helpful as I move through my day. Like your day-timer, it relieves me of the stress of having to remember what comes next, makes for smooth transition between activities, helps me manage my time and meet your expectations. Here's a great website for learning more about visual schedules: www.cesa7.k12.wi.us/sped/autism/structure/str11.htm.
Don't let autism cause you to lose sight of the whole child. Self-esteem is crucial.


7. Please focus and build on what I can do rather than what I can't do. Like any other human, I can't learn in an environment where I'm constantly made to feel that I'm not good enough and that I need "fixing." Trying anything new when I am almost sure to be met with criticism, however "constructive," becomes something to be avoided. Look for my strengths and you will find them. There is more than one "right" way to do most things.


8. Please help me with social interactions. It may look like I don't want to play with the other kids on the playground, but sometimes it's just that I simply do not know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, it may be that I'm delighted to be included.


9. Try to identify what triggers my meltdowns. Meltdowns, blow-ups, tantrums or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented. Keep a log noting times, settings, people, activities. A pattern may emerge.


10. If you are a family member, please love me unconditionally. Banish thoughts like, "If he would just" and "Why can't she.." You did not fulfill every last expectation your parents had for you and you wouldn't like being constantly reminded of it. I did not choose to have autism. But remember that it is happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you I am worth it.
And finally, three words: Patience. Patience. Patience. Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts autism has given me. It may be true that I'm not good at eye contact or conversation, but have you noticed that I don't lie, cheat at games, tattle on my classmates or pass judgment on other people? Also true that I probably won't be the next Michael Jordan. But with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh

[sleepingbeautymama]

Thanks lovemickeya for sharing.

Just an update on my post from last night...We ARE going to go on the trip. I really don't think my dh is excited but he left the decision to me and I felt I had already promised my dd the trip...so we are going! I honestly think I have to worry about my dh more than my dd on this trip because he stresses out so easily over her meltdowns. Are any of your spouses like this? I honestly want to just tell him to leave at times and let me deal with it. If any of you have a spouse like this, how do you handle things? Telling my dh to calm down just makes him worse. Thanks

[wvdislover]

lovemickeya: Thanks so much for this! It will be great to give my DD9's teacher at school this year (wish I'd had it last year!). She is actually ADHD with anxiety issues, sensory integration issues, fine motor delay, "borderline" learning disabilities in math and reading comprehension, autistic tendencies, and now I'm wondering if she has Asperger's--she has some characteristics that are classic, but is missing others. Maybe it's just everything else--who knows?

sleepingbeautymama: I don't think anyone understands meltdowns better than Moms (no offense dads, most of you are at work when a lot of this happens and just don't experience it as much). I know my husband really stresses out and gets angry when my DD9 melts down. He can't understand that that doesn't help, it often just makes it worse. Maybe let your DH read some of the stuff on here, if he will. Maybe you can go to work for him for a week or so and let him take full resposibility for your DD and your other responsibilities :). I know, I know, it wouldn't really work, but sometimes it seems like a good idea! Good luck! Have a great trip and lots of fun planning it! :cool1:

[cindy17]

Thanks lovemickeya for sharing.

Just an update on my post from last night...We ARE going to go on the trip. I really don't think my dh is excited but he left the decision to me and I felt I had already promised my dd the trip...so we are going! I honestly think I have to worry about my dh more than my dd on this trip because he stresses out so easily over her meltdowns. Are any of your spouses like this? I honestly want to just tell him to leave at times and let me deal with it. If any of you have a spouse like this, how do you handle things? Telling my dh to calm down just makes him worse. Thanks
My husband sounds so similar to yours. My DS12 had a doozy meltdown in AK last summer. I honestly don't think he'll be back at WDW for some time which is sad. The topper was when he ran through security at MCO. I totally know where you're coming from. My DH is great when my son is "on" and well behaved. As soon as the slightest thing goes wrong, he freaks out and just makes thing so much worse.

[BlondeAlligator]

Thanks lovemickeya for sharing.

Just an update on my post from last night...We ARE going to go on the trip. I really don't think my dh is excited but he left the decision to me and I felt I had already promised my dd the trip...so we are going! I honestly think I have to worry about my dh more than my dd on this trip because he stresses out so easily over her meltdowns. Are any of your spouses like this? I honestly want to just tell him to leave at times and let me deal with it. If any of you have a spouse like this, how do you handle things? Telling my dh to calm down just makes him worse. Thanks


My DH is getting much better, but he isn't always the most patient guy. He gets really flustered & embarassed when DD has a tantrum in public. Sometimes I feel like I have 2 kids to deal with! It used to be much worse, but he has read the "10 Things..." book & it has helped (the list above only scratched the surface...the book dedicates a chapter to each of the 10 things). I have really tried to get him to put himself in DD's shoes...the truth is that I have had to deal with it more (I stay at home) & she is around me more & responds better to me. I do feel for him when he gets home from work & all DD says is "Say bye to daddy!"...I know that I see more of the bad but I also get more of the good, too. We all have to rememember that it's up to us to be strong for our special kids...make them feel safe & loved & find a neutral party to vent on...don't take it out on your spouse...come to the DIS and talk to us. Once I started posting here on the DIS, I found it easier to deal with things & I wasn't venting on DH as much when I had a bad day.

Hang in there...it does get easier.

[a1tinkfans]

Hello, I Just wanted to send support and a big hug your way!
I am the mom of an amazing high functioning child with AS (asperger's syndrome), diagnosed at 7 and is about to be a teenager (oh MY, how time flies). I want to strongly suggest reaching out to all available services as they were very instrumental in providing the basis for overcoming obstacles like meltdowns, stress (ie associated tic disorder), social skill techniques, etc. I found that the Occupational Therapy with an emphasis on sensory integration issues truly worked wonders. Kids with AS thrive on those bear hugs (usually love the swings and trampolines too). I also strongly believe in social skills classes to teach the child HOW to deal with the daily social situations that don't come easily to them. We were fortunate to be invloved in a program that invloved parents and child in the social skills classes so were all on the same page. Interestingly enough, our child wasn't actually diagnosed until after a visit to Disney when the overstimulation actually caused him to have some motor tics (arm flapping, eye blinking). Before that I was constantly told that I was looking too carefully at each little thing he did and over-reacting to it (I kept hearing that since he was an only child and it took 9 years to have him I was WAY toO focused on these little things. LITTLE?! It wasn't until the Disney episode that I refused to believe that something wasn't up, and went to different doctors/specialists. At the time of diagnosis we thought it was the end of the world and had never even heard of AS. Then all the other issues/things that we had seen with my child (very literal, poor facial expressions/eye contact, rigidity in behavior, perseveration to objects, high sensitivity to smells/sounds etc) came into focus! Well, I can proudly say that my child is doing wonderful, is fully integrated in middle school classes, has FRIENDS :) and is HAPPY. That doesn't mean it's an easy ride all the time, BUT we have all learned how to adjust what/how we do things. We still visit Disney, but at a much more leisurely pace. Yes, we stay at the SAME resort whenever we go and usually stay in the room for a little bit upon arrival to get acclimated to the new environment. Then off we go and the magic begins! We're actually returning this year and we can't wait! Wishing you the best of luck on your Magical Disney Vacation!

[!@#$%]

Just know that you are not alone. Also know that it is so hard for anyone to understand you and yours. People who do not experence a meltdown have no clue. My sons therapist showed me pressure things to do, exp have him hug himself tight. pushing hands against each other. Lots of small things to do when you see him starting the meltdown. This has worked for us. the story idea is great as well. Just know that I still question myself and get frustrated about what I am doing wrong. Sometimes I have to set back and realize I am not doing anything wrong. The best place to get support is from people who have some of the same issues. You can not always control a meltdown or stop it. It is just not that easy. I hope all these post help you. Good luck with your daughter.

great advise. If your child has meltdowns (I know that feeling) it can happen and WILL happen at WDW. Too much stimuli. (spelled?)
My son has rage and anger issues. he once kicked my wife in the shins during one of those meltdowns in the bathroom at WDW till her leg was bleeding. Not good. I once saw another child there who was worse off than my own. He was laying (I can see it in my mind clear as a bell) on the black pavement beside Splash Mountain across from pecos Bills, face down, kicking and hitting the concrete. Screaming to the top of his lungs. He did this for about 20 minutes straight. His father (I assume) just sat there patiently till he was finished. I understood the situation.
heres the "mean" part. There was a high class lady at the next table over. She very loudly (and rudely) said (to her husband) "If that were MY child I'd fix him real good!" :furious: I turned to her and said (couldnt stop myself) "Until you have lived a day in HIS shoes you have ABSOLUTELY NO IDEA what you would do! My son has this same problem, and it pisses me off to hear people who have no idea judge others about what THEY would do. Id suggest you shut your mouth. Her husband looked at me, I looked back at him, and he sat back down. I spend my life trying to explain my sons condition to many who dont care to hear a logical explanation.

[cindy17]

Kudos to you for your response to that woman. Many times I've heard the comments about my autistic DS12 son. Once in a Waffle House in PA my son kicked my husband. It wasn't a terrible tantrum or anything (we've had plenty of those!), but some jerk saw it and had a really nasty comment similar to the woman's that you heard. My husband went off on him and followed him out to the parking lot. It was great! The guy was mortified! :thumbsup2 You'd think in this day and age of being "politically correct" people would be more familiar with autism and not immediately think that a tantruming child was just being a brat.

[SAGE]

Having an autistic DS, now 18 - I've heard it all from strangers. However it doesn't bother me as much now if my son "behaves differently" in public. It was much harder when he was little.
But situations still arise.... he and I are leaving for WDW at the end of the month. He now has become VERY anxious about staying at CBR. Doesn't like the beach or lake so close....alligators and sharks... and what ever else he thinks is in there. Poor guy. I hope I don't have to change resorts after our first night! That could be a challenge and quite expensive!
As a parent of an autistic child, you have to keep your sense of humor.