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!

 

[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.

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 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!

 

[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-