Friday, January 25, 2013

Autistic Meltdowns AAAAAHHHHHHHHHH

A pic of a kid crying does not express a meltdown as accurately as this picture.
Note, I did link location, like right click, copy link location, paste in URL
and it will take you to where this picture belongs, like the artist who painted it.
If you are a parent who has ever experienced your kid losing his shit in an autistic meltdown, I. Love. You. I really do. I feel your pain. I want to hug you. I want to tell you it's going to be okay. I want to clean up the mess your child makes for you, so you don't have to worry about it. I want to throw rainbows all over your house and make all your wishes come true.

Autistic Meltdown from an Outsider's perspective (for those who don't know).

Your child asks you to blow a balloon for her. You stop what you are doing. You blow it up. You tie it. You hand it to her all excited for her that she has a balloon, and that she is actually excited about the simple things in life like a balloon. She flips the fuck out on you. She throws the balloon. Starts crying. Stomping. Screaming. You are asking, "What! What do you want? What's wrong? What can I do?" She is not responding with anything coherent. You sort of make out the word "Purple." You assume she wanted a purple balloon. You think, "Do we have a purple balloon? Maybe I should go buy one. I need a purple balloon..." She never said purple. That's what you heard. Meanwhile, she's tipped the bookshelf over with books all over the floor, you know, the ones you just alphabetized. She has dumped a trash can and thrown chicken bones across the room after kicking the trash she poured on the floor. She also has dumped a toy chest. Flipped a chair. Threw the toddler table. Tried to smash in a window with her toddler chair..... Etc. You still have no idea what the fuck just happened.

Then she calms down after a half hour to an hour. She feels really guilty. She wants hugs. She wants to know you still love her. You figure out what happened was you didn't blow the balloon big enough. You hug her. Tell her you love her. She forgets the whole thing ever happened while you ponder over it for days.

Autistic Meltdown from an Autism Perspective

You are a child. You are tired. You didn't sleep well last night. All day long, nothing has worked out for you. You didn't get to watch your favorite show. You didn't get pancakes like you wanted. Your bowl of cereal wasn't as big as you wanted. Your siblings keep taking your toys, pushing you, hitting you. On top of it, the sun coming through the window is kind of giving you a headache, plus you stepped on something wet and it feels like slimer from Ghostbusters slimed your foot and it won't come off. So you find a balloon, and you want to make a pretend hot air balloon. So you go ask mom to blow it up for you, all excited, and mom ties it before you can tell her you need to have it bigger for your hot air balloon. So now she's ruined it. You can't blow more air in it once it's tied. Then you didn't get pancakes. Your foot feels weird. Your head hurts. Everything is so wrong with your day. You just give up. You can't take it anymore. You are pissed off, sad, overwhelmed, frustrated, like every emotion at once intensified and you don't know what the fuck to do with it but scream and throw stuff. You know you don't want to hurt a person. You know you don't want to really break something even though you really want to. And that stresses you out on top of it. Trying to control it is making it worse....

Basically, everything you are feeling as a parent experiencing your child's autistic meltdown, your child is feeling that too. Lost. Out of control. Angry. Scared. Everything at once.


Overload


That's what it is. Overload. They say senses are heightened with autism, like sight, smell, taste, touch. That's not the only thing that is heightened. Fatigue for someone on the spectrum is more fatigued. Hunger is more hungry. Sad is more sad. Overwhelmed is more overwhelmed. It doesn't help that the mind of autism often gets stuck, like it stutters, and it's really easy for autism to dwell on something, especially negative things. So something that happened to you early this morning can still be a big deal late in the evening. Most of the time, sleep will clear up most of the little things, like I didn't get my way. Bigger things usually takes a lot more time, like a great injustice. Either way, all these factor into a meltdown. It's like the straw that broke the camel's back.

Most people on the spectrum generally have two reactions to sensory overload. One is shut down. They go into a zombified state, like your severe autism. A non-communicative poker face that won't move. The other response is meltdown. It's basically fight or flight, on red bull. As annoying as meltdowns are, it's actually a good response. It means your kid will not give up easily.

How to tell the difference between a normal temper tantrum and a meltdown

A normal temper tantrum, the child is in some control. Usually this is triggered by not getting your way. Adults actually throw them too, but it's different for adults. It's usually in the form of bitching and complaining, or cussing, etc. For kids, it's crying. Autism isn't much different from your neurotypical. We all have the same issues going. Nobody likes not getting their way. Kids, they are just more sensitive than adults. Most are not as sensitive as autism, but they are in the middle. So they cry and stomp and scream in hopes to change your mind.

A meltdown... That's different. A temper tantrum can result in a meltdown, and often will. You can tell the difference when it's apparent that your child has very little control of the situation. You will feel less control. Even if you gave your child his way, he won't accept it. It won't fix it. He probably doesn't even remember what he wanted in the first place. He doesn't want you to do anything. It has nothing to do with you. He's just in need to explode because he's got all these bottled feelings he doesn't know what to do with.

Especially as a child on the spectrum gets older, there's a gray area between temper tantrum and meltdown. Many times a child will do both at once. A part of them has zero control and wants to release all these crazy negative emotions. The other part still wants to get his way. I call these partial meltdowns. My daughter gets them a lot, and sometimes they are in the form of no temper tantrum, but a small, short-lived meltdown. She's learning well to cope with things that she's starting to outgrow meltdowns. I'm very proud of her too because she's only in 1st grade. I was in 10th grade before I started to control my meltdowns better. More than likely, she'll relapse a little bit at some point. I really hope I'm wrong on that.

Do's and Don'ts of a meltdown

Don't nag your kid. Do shut the fuck up. Remember, it's sensory overload. Adding to it is adding to the stress and frustrations. How I do? I keep my verbal communications short and to the point for once. When she throws things, I tap her butt (not for the sting appeal, not possible with autism, but for the hurt feelings this is bad appeal) and say "We don't throw things." That's it. Anytime she does something really bad like throw things, try to hit someone which she's never done mid-meltdown, etc., I do the tap and the tell, short and to the point, and I walk away. It's just there to give boundaries and direction and nothing more.

Remember logic only works before and after the meltdown. If you see one forming, your kid getting worked up, a little anxious, that's when you talk it out. Ask questions. Help re-direct and reassure. Once in meltdown mode, logic does not exist. Don't even try it.

Do keep an eye on them. Make sure they are safe. Some will try to jump out a window or something crazy. it's not that they are suicidal. It's just that they are out of control. Make sure the people around them are safe too. Step in only when necessary for safety and direction. Don't get too naggy detailed about it, like pick your battles wisely. It does sometimes help to move them to a more comfortable location where there's not much people around (especially if you get this in public). That usually means picking up a kicking screaming crazy kid, so don't do it unless you are physically capable of it.

Don't give in. If you were going to give in, do that before the meltdown. Just because it's autism related and actually pathetic the more you understand it doesn't mean you have to reward it. Your kid is going to be in the real world some day, and that world is not forgiving. You still have to have a backbone somewhere, and this is where. Don't give them their way if the meltdown resulted from a "no." Do offer it as a reward later. Like if your child wanted a popsicle and you said no, and they threw a fit that landed into a meltdown, you can offer a popsicle for later.

Don't make promises you don't keep. Same with threats. Trust is important. Autism doesn't respond well to empty promises. If you say, "You can have a popsicle at 3PM," you damn well better have a popsicle to give them at 3PM precisely. With that, if you say, "Keep screaming and I'm going to turn off the TV," you better turn off the TV if they keep screaming. With that, be VERY mindful with what you say. Don't threaten crazy shit like smack the fuck out of them with a 2x4 that you never intended on doing but you yourself are freaking out with them and throwing your adult temper tantrum...

Do stay calm. I know you want to freak out with them. If you do, it makes them freak out more. If you have to freak out at all, drop to your knees and cry. That's one that won't freak them out. It might shake them out of it for their concern over you. Don't overdramatize it.

Reduce eye contact.

Do reduce outside noise. If you have a lot of things going on at once, turn some things off for a minute.

Do break out the special interest and favorite objects. If your kid has an obsession with anything, now's the time to use that to your favor. Example. Nephew, 9 or 10ish at the time, threw a meltdown, had a special interest in Pokemon, so I turned the TV on Pokemon (Netflix actually had it). Within 20 minutes, he was sucked in to the television. My daughter, she loves certain Nick Jr. shows, so I'd put one of those on. I also gave her her blanket. You can also plan ahead by getting DVD's or music...

Don't insult. Do not focus on the child but the behavior. The kid is not a bad kid. Your kid is a great kid. Your great kid is having a bad moment. In the home health care world, they refer to things like meltdowns as a behavior. That's the word they use. So and So had 3 behaviors today.

When you see the invite for it, do hug. Some kids respond well to it, and some don't, but sometimes if your kid doesn't want hugged while playing, they usually still want it toward the end of a meltdown. A lot of parents miss that opportunity for a hug assuming their kid doesn't want touched. Sometimes they don't. You'll have to look hard for it and maybe try it a couple times to get a feel for it. Autism is like a cat. Affection is on their terms.

It's also important right after a meltdown to assure your child that you love your child. I know you are thinking, "Hey, I don't want them to think that behavior is okay, so I must make sure I communicate that." Remember, everything is heightened with autism, including guilt. Post meltdown guilt is a serious guilt. If you try to take advantage of it in hopes to inspire your child to avoid a meltdown, all you're going to accomplish with that is to increase the chances of a meltdown because they will try too hard and it will stress them out and contribute to the sensory overload that causes meltdowns. Your best bet is to just tell them you love them and you always will, and that everything is okay now. Let them rest. I will get into how to help stop the meltdowns more, stuff that works better than telling them after a meltdown.

How to help prevent meltdowns

With most kids on the spectrum, there are some known triggers. With my daughter, the blanky can cause a meltdown. That's her comfort device. If she wants it and you won't help her get it, she flips out. Example. We visit inlaws. We drive to the beach for a day of fun. Halfway down the street, like 300 feet away from the house, my daughter realizes she forgot her blanky. She requests it. My father in law refuses to turn around to get it. She screamed, kicked, cried, flipped the fuck out for over an hour. My father in law, the Puerto Rican man who thinks autism is hogwash and these kids need discipline, and we need to throw that blanky away... Yeah, every time after that before we left, he asked if she had her blanky. You totally pick and choose your battles wisely.

Anyway, with known triggers, avoid making them triggers. That's the easy part. The hard part is the unknown stuff. Figuring it out, especially if they aren't communicating well.

Sleep and hunger are a big deal. If your kid is tired, or worse, hyper-tired (ADHD looking stuff), expect meltdowns. Hunger is a big deal just the same. Make sure your kid is eating healthy and getting enough food. Sometimes we forget about lunch as moms, you know, like we forgot about that one doctor's appointment and where we put the keys, and sometimes we forget until like 2PM, we are like, "Shit, we got to feed these kids." Yeah, try to avoid that with the eating.

Here are some other tips on progress:

Most important, long term progress, communication skills. Speech therapy and whatever else they offer is helpful. Get your kid to use his words. Studies have shown with hyperlexia (all of which get an autism diagnosis), as a child improves his language and communication, the negative behaviors of autism go away on their own. There's truth to that. A lot of the meltdown issues are a result of your child's communication frustration. Back to the balloon example. Had my child informed me as I was blowing the balloon that she wanted a big balloon for a certain game she made up, I could have easily blew it up to the size she wanted before tying it.

Expression. Drawing their emotions out is a beautiful way to let them express. Music instruments are awesome too. Some express in sports. The main thing is, give them healthy outlets to express their feelings throughout the day, and then look for it and approach it. My daughter draws. I never let the kids use coloring books. I always gave them paper or canvas, blank. Yes I have a lot of scribbles, but they are now learning to draw. My daughter will often hand me pictures of stick figures with frowns. That's when I know something is bothering her. We talk about it. Sometimes the talks go no where, like I never figure out why she's sad. Other times, she tells me. Trying to talk about it when she needs to is very helpful in her overall moods. Remember, the shit builds and stews for meltdowns, so discussing negative emotions help release it.

Discussion. If your kid is old enough to talk about things, talk about it. Bullies at school and awkward social situations are usually a pretty big variable into the meltdown cocktail. It helps too to explain social situations as they occur because as your child outgrows the language barriers, the social barriers create a new frustration.

My daughter will often go into a little fort she made or a small kid tent we have to prevent the meltdown, just to escape. It's awesome. A small place that is their place where nobody can bug them. Autism needs their alone time. Respect it. Provide a place for it. My nephew who is older often gets lost in video games. If he's not allowed them because of a punishment, he will also get lost in a book or just sit in his room (which he didn't always have his own room).

Set the example. That's another big one. A lot of our children's behaviors are learned behaviors. The more you control your emotions, the more your kids will theirs. Remember the beginning of the cartoon 101 Dalmatians movie where all the dogs look like their owners? In a sense, your kids are that way. 90% of parenting is setting the example. Everything else either handles temporary phases or amuses you while you wait through it. End result, kids end up a lot like their parents, or the exact opposite if they hate you.

Avoid the authoritative parenting. It doesn't work on autism. You need to be one of those parents, the ones who read up on psychology and offers options to their kids, and "spoils" their kids. The nurturing parent who respects their kid goes further with autism than the authoritative parent who belittles their kid. Only you know where you fall, and neither are bad parenting, it's just one is more effective than the other when it comes to autism. A lot of people don't like that part.

Get to know autism. Find people who have it and read their long ass stories about it. The more you understand autism, the easier your logic works to your favor. Really, it's like taking those little things you experience and feel and barely pay any attention to and understanding it's a little more amplified for autism. Observe your kid. We all know our kids, but your kid is sending clues.

Constantly do little autism business meetings with yourself. Set goals. Make a plan. Implement plan. Monitor results. What's working? What's not working? Is it really working? Is it really not working or do you need to give it more time?

Do listen to your heart. Moms have this thing called instinct and intuition. They know their kids better than anyone else. Nobody else is as qualified on the subject of your child than you and your child. Give it an honest go though between what sounds easier for you and your wants vs what's better for your child and his needs. Even moms with the best of intentions get those screwed up a little. It's okay if you do, but give it an honest effort. More often than not, your instinct will disagree with the millions of voices surrounding you. You are probably reading this right now looking more for reassurance to something you feel as opposed to looking for answers. Go with your instinct. If you are wrong, you and your kid will take the fall. If others are wrong, you and your kid will take the fall.

Allergies: Not all of autism is allergy induced, but certain allergies in some people appear like autism. If your child who is on the spectrum also has a food allergy, I can see (as a mother of a kid on the spectrum and a kid with food allergies) some of the negative autism things to be worse, especially the meltdowns. It's hard to get your kid tested for allergies, at least it was for me, but an allergist can do two types. Skin testing tells you for certain if allergic or not. They take something the size of a pencil tip, dip it in the allergen, and poke the skin (like the back). They do that with every option they offer, wait 20 minutes, and whatever's red is allergy. The 2 year old with sensitive skin didn't even flinch through it. Blood work, the second option, has a false positive, meaning if it's negative, your kid is definitely not allergic, but if it's positive, your kid could be or not. I would say if you suspect any allergies to definitely be proactive, argue if you must, shop around doctors if you must and get your kid tested. DAN doctors, they are kind of the witchdoctors of autism, will do a lot of allergy testing, but they also have a lot of crazy untested theories on the subject that come out sounding pretty valid, even though it's not. I would assume they'd be very helpful nevertheless as long as you keep your wits about you.

Meds

I am very anti-meds because of the dependency and side effects. Be careful going down that road. My sister was one of those parents who sought the miracle magic pill to solve her child's problems because she didn't (which I'm not suggesting you are anything like her because nobody is like her) really want to deal with her kid's autism. I'm going to misspell all these meds by the way... Anyway, they started him on Risperdol, and that was right around the time they switched him schools. The school he was attending, the principal was very abusive to kids, especially the autism ones. The new school was good for him. That principal knew autism well enough to know when to be nurturing and when to put her foot down. His meltdowns decreased, and I think it was the school, and not the meds. The principal threatened expulsion if he hit another teacher, and then she provided an aid to follow him around all day to help him cope with every moment. The school meltdowns stopped all together. The home ones continued. So my sister was thinking the Risperdol did it, and she was happy until summer hit. Then they added an antiepileptic. Then a second one (Topamax). Then Intuniv. That's when he got real crazy. Uncontrollable mood swings. Threats of suicide every time he didn't get his way. He is 12 now, and he was fighting with my 6 year old over a teddy bear. He was getting worse. I didn't see Asperger's in him anymore. I was seeing side effects of meds. It wasn't the Intuniv that did it as much as the interactions between the pills. Finally, my mother has custody of him now, and they weaned him off the Topamax, and he's improving. They plan to wean him off other meds as we go down the road. Once you start meds, it's hard to turn back. Some people, it works out well for them. Others, it's ugly. I never suggest it unless it's a last resort. My sister thought it was, but she convinced herself of that lie because she had yet to try 90% of the non-pharmaceutical options out there. She just wanted an easy out. The more she neglected the autism, the harder her kid was for her.

I hope you find this advice useful or at least informative. Sorry I didn't get too entertaining outside the occasional potty word. I definitely hope for your sake and your child's that things get better and progress, like I'm sending good juju through this blog your way. May you and your child be blessed.

1 comment:

  1. not boring at all. extremely helpful and very well written.

    ReplyDelete