My Experience With Respite Workers

Please welcome Michelle as she shares more about her experiences with us. We appreciate her taking the time and admire her for sharing something so personal so that we might be more aware and protective of our own children. Feel free to leave a comment below the post for Michelle!

                                                                                                                                       Lorrie

To all special needs people and their families and others that want to learn and understand:

I would like to tell you what you should know and what you should think about before you let any workers from the state or anywhere else into your lives so you do not have to go through what I did and  what I am still going through even now. The reason I am still going through this now is because I still think about both things a lot and get pictures in my head still quite a bit. These things happened about maybe 12 years ago and people think that they shouldn't still bother me but they do and always will because they were very bad and a lot of stuff that happens now reminds me of this and also what happened in School but that is a whole different story. The state does help in many other ways though. Now I will tell you what happened with the workers. Well one day we met this worker that was really nice and we were happy with her and we thought it was really going to work out with her. I also thought she was my for real friend but it turned out that she was NOT AT ALL. The first time she came we met her down at grandmas house. The first time was just to meet her and we did not go anywhere. She brought her car this time. This time mom stayed with me. Then the next time she came we met at grandmas again this time she brought the state van. Mom had left me alone with her because she was supposed to and when mom went away she was very trusting that she was going to be nice to me but she WAS NOT AT ALL the next time. We started out inside grandmas house and then we went out on the porch to sit because grandma had just yelled at her. She was really nice this day also so I was even more trusting but She was talking on her phone to somebody and said the f***ing grandma just yelled at me only she said the whole word. Grandma yelled at her because she was in the way and grandma was  starting to loose her mind and was not doing good at all because she had just fallen a week or two before that she was hardly walking. Since the fall she just kept on getting worse and worse. Grandma only started to act very very nasty that year even before the fall. That day we did go out in the van just for a ride because she wanted to get away from grandma. Everything was fine then. We went to get gas at the DMV because that is where the state workers get gas. She also went to the bank down that way I never want to go to those places again with anybody because it reminds me of her. The next time she came is when it all started. She brought her car again and we went somewhere again. She wanted to go to a restaurant so I thought it was going to be nice so I was happy  and once again  too trusting. When we got to the restaurant she did not like the way my hair was because it was not fixed the way she wanted it to be. It was just down and straight like always but she wanted it up so she tried to brush it and fix it like that but I would not let her because I do not like people to fix my hair or even touch it. She got mad and THREW the brush back in the car and it was a brush that she had in her car and I did not know what it was used for and for all I knew it could have been  a dog brush or used for something else. She was doing this while we were standing outside of the car. Then we went into the restaurant and sat down I was nervous the whole time even though she didn't do anything that bad THEN. When we got our food she started eating it but I did not feel well so I was looking sick and not eating. When we got back in the car she said THANKS FOR SPOILING MY LUNCH the whole time she was saying this she was flicking my leg and looking in the back  where I was sitting instead of at the road and she was driving VERY crazy zig zagging all over the road on a very skinny road in the second lane. There were 2 or 3 lanes on her side of the road she could go in. While she was doing all that she was saying SO WHEN DO YOU WANT ME TO KICK YOUR ASS NOW OR LATER. She was saying all of that in a very mean and mad sounding voice. It was a good thing I was sitting in the back because I do not even want to think about what could have happened if I was sitting in front with her. Then when she was done doing all that she drove to her house either that or her boyfriends house or they both lived there. She pulled over on the road in front of the house and started beeping her horn for her boyfriend to come out to kick my ass but he was not home luckily. Then since he wasn't home she took me to the park and parked in the back parking lot and said so does this look like a good place for me kick your ass. She was going to take me out back in the woods and do it. So since I was very scared I reached over the seat and gave her a hug because that was all I could think of at the time to stop her from taking me in the woods and beating me or doing whatever she was going to do. When I hugged her she said is that your way of saying your sorry. She also said this with a lot of anger in her voice. Then I finally got to go home. I really thought I was never going to see mom again I was so scared. When I got home I went crazy by having melt downs really bad so mom figured out that something went wrong when I was with her mom wasn't really sure what though at the time. Mom called her up and said we no longer need your services and she said why not and then she said Michelle spoiled my lunch and mom said she doesn't feel like eating sometimes when she is getting her period and her voice went way down and she said oh I didn't know. 

Then I got a new worker later on I thought she would be different like better but she was NOT at all. She also came to visit us first before she started working with me only this time at our house. At this time she was working with another special needs boy. He was trying to get in our house. He went up our stairs and started wiggling the door knob but mom had locked it before she came out. I did not know why he was trying so hard to get in but I do now after I had been with her. It was because he was trying to get away from her because she was probably VERY MEAN to him too. The next time she came I went in her car because I was trying to give her a chance and tried to trust again after the first worker. She took me to her house and when we got out I was kind of scared to go in her house because I didn't know what was going to happen to me because I thought it was a little weird that she wanted to go to her house. She grabbed my wrist and yanked me so hard that I almost fell because I wasn't coming and while yanking me she said COME ON YOU  F***ING RETARD only she said the whole word and she said it with a lot of anger in her voice while gritting her teeth. When we got in the house I sat at her table for a little bit with her dog while she sat way across the room and not at the table with us. Her dog had come over to me I think because he could sense I was feeling scared about being there he just stood there and let me pat him. Then I had to go upstairs with her while she sat at her computer for a very LONG time. She turned on the fan because it was so hot up there. It was so hot because it was a very tiny room with a lot of stuff in it which made it even tinier. She sat with her back turned to me the whole time and she had made the fan so it wouldn't  turn so it would be on just her and had me sit away from it so I could not feel it at all. Sweat was just pouring off of my head. The whole time I was with her she did NOT even spend time with me and hardly said a word except for the time that she said that swear word. When it was time for me to go home she turned the radio up in the car probably as loud as it could go and I think she even put bass on and she also lit up a cigarette with all the windows up tight except hers might have been cracked just enough for her to flick her ashes out. All the smoke was going in the back where I was sitting and she was driving very very fast on our road which is only supposed to be 25 miles an hour. When we got home mom was outside to greet us and she asked how our day was and she lied to mom and said oh we had a very nice day we went to the park and had a picnic which NEVER happened. mom believed her at the time and said oh isn't that nice.when Mom found out that was not true she had her services stopped too but I don't remember if she called her or the company she worked for. This was the second time that mom had stopped services so the people that mom had to deal with that worked for that company were VERY VERY mad at mom because the boss did not like mom at all and was VERY VERY mean to her and did not want to hear that their workers did anything wrong. At that time there was also a lot more bad stuff going on that was not moms fault but they made it look like it was so they took her to court for it anyways I can't tell you everything that she said or did to mom because it will take to long right now. They just did NOT care or listen because at that time I did not have any way to talk like no computers or F.C so it was moms word against theirs and of course I don't even know if those workers even got in trouble for it.  They thought I was retarded and not able to tell people things so they thought they could get away with it but what they did not know is that I could sign and besides mom could tell when something went wrong because she is my mom. So now because of all this  stuff that happened I don't know who I can trust or who is just playing my friends or who are my REAL friends. So now this might help you to understand why your kid might act upset when they are done with their workers or others. If they are acting upset please please try to find out why and hopefully you can get people to listen and believe you and if your kid has a way to talk hopefully they listen and believe them too. All this stuff that happened is hard for special needs people but especially hard for autistic people. If your thinking something BAD is going on you might want to find a private one like we did. I now have a new one that has been our friend for 20 + years. I only go with him once a month if that. It took me so long to tell you all of this because I wanted to tell you everything so you and your kid does not have to suffer Like we did. PLEASE be careful who is working with your kid. 

"When The One Whom You Advocate For Is Your Voice"

Over the last week, my seasonal allergies have caused my voice to disappear. Yesterday was extremely difficult and frustrating for me because I was giving a Science test to four separate classes of fourth graders and all that I could do was whisper! If that wasn't enough, it was my day for cafeteria and recess duty!! I made it through the day and didn't even consider how not having a voice would affect my weekend. Unfortunately, it isn't until you lose something that you realize how important it was to your daily routine.

     Today was a new experience for me...I had almost no voice therefore, Nathan and his older brother, Vincent, were my voice! My husband had to work and I was supposed to take the boys to see "Finding Nemo" at the AMC Theatres for the monthly "Sensory Friendly Film". When we got up this morning, we decided that a Sonic breakfast toaster sandwich sounded good. It wasn't until we were almost there that I realized that I could not speak loud enough to order the food! I had to ask my almost eleven year old son to place the order for me. Talk about humility! And when we driving to the movie theater, I asked Nathan to help me tell the ticket clerk which movie that we needed tickets for and how many. I was so proud of him and his brother for helping me like they did today! I asked them if I were to treat them to lunch at Arby's for roastbeef sandwiches and jamocha shakes, would they be willing to place the order for me...of course, they said "yes"! We had an adventure of a different kind today, with them being my voice.

     

"Sharing With You, My World of Autism"

I would like everyone to give a warm welcome to my new friend, Michelle. She has agreed to share her story with Nathan's Voice. Please feel free to show your support by leaving her a comment at the end of her Guest Post. Thank you for your time!                                                     Lorrie

Hi my name is Michelle and I have autism. Just because I am autistic does not mean me or any of us are retarded. I am writing This paper to help the people that really care and want to learn and understand more about autism and for the autistic people and their families. I am also writing This to help the autistic People so they do not have to suffer like I did for ALL my school years and more but of course they have a lot more out there for autism  now but they did not back when I was going to school so I had to deal with crazy doctors and teachers and kids. If you ever hear people talk about autism and you hear them say a s d that means autism spectrum disorder. Autism is on a very wide spectrum. People with autism usually do very little to no eye contact with normal people except some do eye contact with their parents. In some cases some of us also have problems with being social and a lot of trouble learning normal things. We may also rock back and forth and we may flap our hands or flick our fingers and do other kinds of movements with our hands.  We may also wander around or run off and some of us may also move our feet in a way that is different from normal people and some of us may also spin ourselves in circles or spin things and may get very excited when other people spin things to. We may also scream or make other kinds of noises for no reason or when we are happy or mad or sad and it is up to our parents and friends or people taking care of us to figure out why we are making those noises or doing whatever we do. Some of us may also line up toy cars and blocks and other things. Some of us may also be very bothered by loud noises and a lot of people  and also by fluorescent lights which are what most stores and schools have and also other businesses so that makes it very tough for us to learn or be quiet or calm in those places so if possible please turn off those lights and either use a black light or let the sunshine in. Most of us have not quite but almost the same kind of hearing and smelling as dogs. We also notice details that most people don't even pay attention to at all. Noises that are not loud to normal people are extra extra times louder to us so please do not tell us oh thats not loud and please don't say oh come on get over it because you do not know what is loud to us because you are not inside of us. Some of us also do not except change well at all like when we have been in a place and then the next time we go in it is changed around and there is many more kinds of changes that we can't accept but they are different for all of us. 

Autism has it's good side and sometimes it's bad side. I am only going to explain one of the good and one of the bad side of my autism because it will be a lot to say and also I can not really speak for other autistic people  because what is the good and the bad for me may not be the same for others because even though we are autistic we are still all different in our own ways. One of my good side that a lot of autistic people share is that we are very very smart in certain ways but some of us may not know what we are really good at because to us it is just natural and one part of my bad side is that I don't always hear or understand people when they are talking to me or each other because of all the background noise normal people can filter it out but most autistic people can't. We also can't tune out background noise if we are watching tv or trying to listen to people say things to us or in stores or other places. It also bothers me when sometimes I don't understand or hear people when they are talking to me when I am in my own little world but I am not in my world half as much as  I was before  because mom worked  a lot with me but i mostly do go into it in stores because of all the noise and commotion. Please remember that we are not purposely ignoring you or anything so please don't take it personally a lot of us are in our own little worlds because your world is way to confusing for us so we have to go in ours sometimes some of us like me hear and understand what you say fully and we may even help you when we are out of our little worlds if our brains let us at the moment. Normal people can tune out the background noise and listen to a lot of different things at once but our brains don't let us do that all this and more is called sensory overload. 

Sensory overload can also cause some autistic people to get very upset and can be thought of as having a bad attitude or being rude and more but none of those things is how we really are. It also gets very frustrating that normal people don't understand my sensory feelings like the way I feel things which is a lot different than the way other people feel things and it makes me upset when people say oh that didn't hurt when they don't know what hurts us and what doesn't because they are NOT inside us if they touch my arms or head or hair lightly  I might say ow or get upset like scream or pull away because light touch can hurt some of us on certain parts of our body. Please be patient with us because some of our brains work like dial up modems when normal people's brains work like high speed modems. That means we can only take in a little information at a time and if people try to give us a lot of information that we can't handle our brains can go into shut down mode and we can have melt downs or go into our own little worlds because we get to confused and just can't handle it. If we can get ourselves out of the situation right away sometimes we don't even go into overload or at least not as bad. Sometimes there is nothing we can do but just have melt downs and then we are fine after it is all done. We all have melt downs in different ways. We can drop to the ground and have melt downs or just sit on the ground and sometimes it takes a lot to get us up or we can just have melt downs standing up or sitting in a chair a lot of different things can cause melt downs in us. Melt downs and a lot of our other behaviors are sort of like seizures because we can't control them and can't stop them until our brains are ready to let us. The only difference between our behaviors and seizures is that seizures damage a part of a persons brain each time when our behaviors don't. 

Autism is a neurological disorder not a psychological disorder and  should not be thought of as that and autistic people should not be thought of as crazy or weird but some autistic people will think of themselves as crazy or weird like I do. There is high functioning autism also known as aspergers where they can talk in normal sentences and can have way above normal IQ's. Then there is moderate autism and Then there is another kind of autism which is the low functioning kind where some of us can't talk unless we had the autism diagnosis as a very young kid so we could go to the right kind of schools and therapies for autism which I never had all my life. If you want to know all the names of the different kinds of autism you can look online. The lower functioning ones that do talk may not talk well or only say a few words or may repeat what they hear from tv shows or what people say plus more. Some people think that certain ones that are low functioning like me are not smart just because we can't talk but that does not mean we don't know things so people need to give us all a chance. We are very very smart in our own way also as a very young kid but people don't know it until somehow they figure it out.  We may also know things that you do not know and can do things that you can not do and things that are hard for you might be very very easy for us and things that are easy for you might be very very hard for us. They can tell how smart the high functioning ones are but one of the differences between us and the high functioning ones is that they can show how smart they are because they can talk and more when we can't show how smart we really are it gets very frustrating . My mom knew I was VERY smart from a very young age though because I could take things apart and fix them and then put them back together again exactly the same way.  Some of us also know and can do a lot more than normal kids know And can do them at a very young age. People think of us as either severely retarded or severely autistic just because we can't tell anybody things or show them how smart we are but we are not severe or retarded. Some of us don't have any computers or anything to talk with because people don't bother with many of us because they don't think we know anything like how to use a computer or anything else because a lot of people think just because we don't talk we are dumb and there is no hope for us which is not true at all so they not even try to give us a way to talk but what people do not know is that a lot of us know a lot more about computers than normal people do. I have a computer that talks for me at home and on the phone and at doctors appointments and some meetings. I now have another computer that can go in my pocket that I can use in stores and other places that I can't take the big one because the big one Is to heavy to carry around in places that do not have tables and also I can't use the mouse out in stores so I would have to use the touchscreen which I can not do without someone holding my hand to help me point and to help me steady my hand but if this computer was a lot smaller nobody would have to help me because I could just hold it and use my thumbs but it is fine for the things I do use it for. I now have an iPod touch that talks for me that I can take  places so now because of the iPod touch I no longer feel trapped in my silent world of autism because now I can share things and tell people things and ask them things and answer their questions and not just yes or no questions either. I couldn't do any of This before and now people understand me and I am no longer frustrated and now I can talk just like everybody else.  

Some of us may have some problems when we are born and when we get a little older the problems can get more and more and some of us are normal up until 1 or 2 or 3 years old. Autism can come at any of those ages or we can be born with it but some people may not notice it until those ages. If we once talked before our world of autism came we may no longer talk or we may go down to 1 or 2 words if that. We may also go backwards and stop doing the normal things that other kids can do that we could once do. We may also go more and more into our own little worlds. Some of us may talk again or we may still only be able to say 1 or 2 words or we may never start again. The high functioning kids may never stop talking and they may not go backwards either but they still do some autistic things like hand flapping and more. Even with all the stuff out there for autism now it is very tough for these kids to get diagnosed because their autism is so mild. I was not high functioning but it was still hard for me to get diagnosed because they chose not to know what was wrong with me back then. I started getting tested at around 4 years old and just because 1 doctor gave me 1 diagnosis then the next doctor would copy the other doctors diagnosis and then also come up with one of their own which were all still wrong. I was diagnosed with P. D. D. N. O. S at age 4 that means pervasive developmental disorder not otherwise specified which can be kind of on the autism side but they also diagnose you with that when they are not sure what is wrong with somebody but somehow that diagnosis was no longer 1 of them for me so they kept putting  really bad labels on me from 4 years on up. I went from doctor to doctor and They diagnosed me with all kinds of crazy behavioral and psychological disorders and treated me very badly for them in almost all my schools to the point of abuse and neglect. The schools were trying to get me diagnosed with what they wanted me to get diagnosed with. I had to suffer almost all my life for many years with the doctors and teachers and therapists and others. 

Some moms of autistic kids think it is the worst thing in the world that could happen to have an autistic kid and they cry and blame themselves. They also get blamed by other people sometimes even strangers who don't know what they are talking about which has happened all our life. Their families should think Of it as a good thing because like I said before it makes us very very smart in our own way. Mom knew I had a problem from the time  I was born or maybe a few months old because she did these little things that you do with normal babies and I didn't respond to them at all. She had watched a show about autism and saw how that little boy on there acted and she said to herself that's my baby. I skipped crawling and couldn't sit up alone and wasn't walking so because of all these things when I went for a check up at the doctors mom told him all that and he said oh she is fine but then by the time I was 11 months old and I still wasn't even standing up alone or doing any of those other things then he was worried so he was going  to have a physical therapist help me But he didn't have to because I finally started doing it. Mom tried to tell them for a VERY long time that she thought I was autistic but they did not listen to her and they were not nice to us at all either. The Psychologists and teachers and counselors got very very nasty with her to the point of telling her she was a very bad mom and they said and did a lot more really bad stuff. They all blamed mom for my problem they said it was her fault and that she needed to yell at me for everything and they also wanted her to go to parenting classes. Mom worked with me for a long time before I started school and even maybe a little bit after that because she still knew I was autistic. I would not be doing as good as I am doing now if it was not for mom because I definitely didn't get that good stuff in school or other places. I was supposed to go to preschool but they wouldn't accept me because I was still in diapers at the age of 4. When I was fully potty trained then they let me go to preschool. I only went for a short time because I was going to go to kindergarten when I turned 5 next year. I started in kindergarten at the school in my town. When I was about 8 1/ 2 years old the school wanted me sent away to a different school for really bad behavior kids.They also wanted me to go  to a psychiatric inpatient hospital for VERY crazy people. They gave mom 3 choices of schools and  a few choices of hospitals but she didn't want to pick any of them because she knew they were really bad for me but they said if she didn't pick one they would call DCF on her and have me taken away from her  so she ended up having to pick one of those schools because she didn't want to loose me. They still ended up calling DCF on her though and they said she was neglecting me because she didn't want to have me sent away so they took her to court. 

We had to visit all of the schools and hospitals one of the schools had animals so mom picked that one because I love animals but what mom didn't know was that after I was there for a while I was not going to be able to do anything with them because the teacher was making me trust her after I started to trust her then she would punish me for every little thing so I couldn't do anything with them anymore but some of the other kids were not in trouble much at all because the teacher liked them but the ones that were in trouble did really bad things like running away and climbing through ceilings and a whole lot more really bad stuff. There was one boy that they dragged to the timeout room and he somehow climbed up through the ceiling and jumped down on the counselors desk and then ran away so they had to call the cops. I never did any of those things but I still got punished for everything and anything anyways just because I was in a behavior class. I had to witness all of this stuff and see kids get dragged or restrained and hear them swear and more. It was not until many many more years that we found out I couldn't have chocolate but it was almost like I knew that way before then because I didn't eat it that much. One day it was this kids birthday and he had a chocolate cake and I wouldn't eat it. It was almost time to go home so because I didn't eat it the teacher sent my bus away and then when I still didn't eat it she took a whole handful of it and tried to shove it in my mouth and down my throat and I still didn't eat it so she made me sit behind a divider which is the first step before the timeout room. I was so frustrated and scared that I slapped her hand but I didn't do it very hard I would never hurt anybody purposely but I was only trying to stick up for myself because I had no way to talk all the horrible years that I was in school. She told me that I was being very rude by not eating the cake. She had never called mom to tell her that she sent my bus away it was getting late so mom called to see where I was and she told mom what happened and she said she was going to come and get me and the teacher said NO she would have the bus come back instead.  I just wanted my mommy because I was SO sad and scared because I thought I was never going to get to go home and that I was never going to see mom ever again. Finally the bus came back and I got to go home. 

Whenever I was trying to tell mom what I wanted I would grunt and reach out for it which is also part of autism that was before I knew sign language. When I grunted and reached out like that mom would say the name of the thing I wanted and then she would give it to me because she had gotten to know my grunts but she got yelled at very hard by doctors and others for giving me the thing but then many many years later I learned sign language. The only person that taught me sign language was the little deaf boy that went on my bus. No teachers or anyone else like that would even think of teaching me sign I guess it was because of my nasty diagnosis's. we went through a whole lot more really really bad stuff that takes up to much time and space to write. The schools and the inpatient hospitals that I went to were very very bad and scary and terrible and upsetting. I was FINALLY diagnosed with autism at 17 YEARS old because after ALL those years we finally found the right doctor and he said all those other reports were all a bunch of nonsense. 

If you have an autistic kid that doesn't talk please  make sure people know their not deaf or retarded and that they sometimes know that your there. You should NEVER force them to learn to talk because some will learn in there own time and others may never learn. There are so many kinds of computers out there now for us to talk with. Some kids may be able to talk but not be able to tell their needs or wants so those computers can help. 

Everybody should know AUTISM IS NOT A DISEASE it is a disorder and you CAN NOT CATCH AUTISM. Some people think we are fine and that there is nothing wrong with us just because we look normal and can act normal at times but then they get surprised and annoyed and upset and scared when we act a way that that they just don't understand just because our faces sometimes  don't look different. Then there are those people that blame the moms for our behavior just because they think we are spoiled and that we are trying to get our own way but that is NOT how it works with us. What you think of as getting our own way is us doing things you just DON'T understand for one example screaming. People think that just because we scream that we are brats so before you start blaming our moms or saying nasty stuff to our moms or to us or about us think about why we are acting like or doing the things we do uh there might be something wrong with us like uh maybe AUTISM. If you see a kid having a tantrum or spitting or yelling and screaming  and more they might be autistic so don't think they are spoiled brats and if you know they are autistic and they are having a melt down or screaming and more  it could be anything from the LIGHTS to TOUCH to SOUND and more but sometimes when we know what is causing us to act like that sometimes we can learn how to work around it. Some moms don't know why their kids are acting different than other kids so the last thing they need is people like that saying mean things to them or their kids. 

Most of us CAN make our own choices and we SHOULD be ALLOWED to and our moms SHOULD NOT be yelled at for letting us or told not to let us. If you think your kid is autistic please try to find a GOOD doctor or schools for autism. Don't forget the earlier your kid gets diagnosed the better off they will be when they get older. I hope this helps. If you have any questions please post them in a comment below. 

Sharing with you my world of autism 

By Michelle

Preventing Meltdowns: Outsmarting the Explosive Behavior of Individuals with Autism Spectrum Disorders

Please welcome our newest Guest Blogger, Judy Endow, author and international speaker as she shares with Nathan's Voice on a subject that most of us have experienced! We encourage you to leave a comment at the end of Judy's post, telling us how helpful the information was for you.
                                                                                                                                  Lorrie

Judy Endow, MSW

Meltdown behavior is quite common for those with Autism Spectrum Disorders. And, indeed, the most frequently asked question by parents and educators is: “What do I do when my child has meltdowns?” 

When the meltdown is occurring, the best reaction is to ensure the safety of all concerned. Know that explosive behavior is not planned but instead is most often caused by subtle and perplexing triggers. When the behavior happens, everyone in its path feels pain, especially the child.

Stages of Explosive Behavior

So, what exactly is explosive behavior? In my book Outsmarting Explosive Behavior: A Visual System of Support and Intervention for Individuals with Autism Spectrum (Endow, 2009), explosive behavior is defined as having four distinct stages, followed by a clearly defined recovery period. In addition, the physiological fight/flight mechanism is triggered immediately prior to the explosion.

In this model, the four stages of explosive behavior are the same for all experiencing explosive behavior and are depicted by four train cars called Starting Out, Picking Up Steam, Point of No Return, and Explosion. The idea is to try to prevent the train cars from hooking up because when they do we have a runaway train that ends in explosion.

Working backwards, the Explosion is the stage where the meltdown behavior is evident. Immediately prior to this is the Point of No Return, which is exactly what it implies -- there is no going back from the meltdown because this stage is where the fight/flight response is triggered. The pupils dilate, and breathing and heart rates increase. Physiologically, our bodies respond as if our very lives are at stake, and we automatically behave accordingly: We fight for our lives. It is entirely impossible to reason with anyone in this survival mode. As soon as you see the child’s identified Point of No Return behavior you can know the Explosion is coming and need to do your best to quickly create and maintain a safe environment.

The place to impact explosive behavior is ahead of when it occurs. In the Starting Out phase, whispers of behaviors are evident. The Picking Up Steam phase is just that—the whispers become louder. Though you can learn to successfully intervene at these stages, the most effective way to manage explosive behavior is proactively, before the whispers even start.

Strategies to Prevent Meltdowns Before They Start

An individual mix of three major supports and interventions is usually most effective in preventing the first stage of meltdown behavior from starting. These three major supports include proactive use of a sensory diet to maintain optimal sensory regulation, visual supports, and managing emotions that are too big (Endow, 2011).

People with AS usually do not have sensory systems that automatically regulate; instead, they must discover how to keep themselves regulated. This is most often accomplished by employing a sensory diet. A sensory diet for a person with autism is like insulin for a person with diabetes. It is easy to understand that a person with diabetes has a pancreas that is unable to regulate insulin effectively. We can measure blood sugar and know the exact state of affairs, and from there figure out how much insulin the person needs.

Sensory Diet: Unfortunately, medical science does not allow us to take a blood sample to measure sensory dysregulation. However, we can figure out and employ a sensory diet to prevent dysregulation, and just like insulin prevents serious consequences for a diabetic, a sensory diet prevents serious troubles for an individual with ASD. As an adult with autism, I spend time every day on sensory integration activities in order to be able to function well in my everyday life. A sensory diet employed proactively goes a long way in preventing the Starting Out stage of explosive behavior from ever occurring (Brack, 2004).

Visual Supports: Another crucial area of support to put in place proactively is that of visual supports. As an autistic, I can tell you the saying “A picture is worth a thousand words” is the monumental truth. Although each person with ASD has a unique experience, processing written and spoken words is not considered by most of us to be our “first language.” For me, the meaning I get from spoken words can drop out entirely when I am under stress, my sensory system is dysregulated or my felt emotions are too big. Visual supports can be anything that shows rather than tells. Visual schedules are very commonly used successfully with many individuals with ASD. Having a clear way to show beginnings and endings to the activities depicted on the visual schedule can support smooth transitions, thus keeping a meltdown at bay. For maximum effectiveness, visual supports need to be in place proactively rather than waiting until behavior unravels to pull them out.

Managing Felt Emotions: A third area in which many with ASD need proactive support is in managing felt emotions. Most often, felt feelings are way too big for the situation. An example in my life is when I discover the grocery store is out of a specific item; I get a visceral reaction very similar to the horror I felt when first hearing about the 9/11 tragedy. I know cognitively the two events have no comparison and, yet, my visceral reaction is present and I need to consciously bring my too big feelings down to something more workable in the immediate situation. Managing felt emotions does not come automatically, but can be learned over time with systematic instruction and visual supports such as The Incredible 5-Point Scale (Buron & Curtis, 2004).

The good news is that explosive behavior can be positively impacted. With proactive supports, explosive behavior can be outsmarted so individuals with ASD can move on to living purposeful and self-fulfilling lives. 

References

Brack, J.C. (2004). Learn to Move, Move to Learn! Sensorimotor Early Childhood Activity Themes. Shawnee Mission, KS: Autism Asperger Publishing Company.

Buron, K.D., & Curtis, M. (2004). The Incredible 5-Point Scale. Shawnee Mission, KS: Autism Asperger Publishing Company.

Endow, J. (2009). Outsmarting Explosive Behavior: A Visual System of Support and Intervention for Individuals with Autism Spectrum Disorders. Shawnee Mission, KS: Autism Asperger Publishing Company.

Endow, J. (2011). Practical Strategies for Stabilizing Students With Classic Autism to Be Ready to Learn: Getting to Go. Shawnee Mission, KS: Autism Asperger Publishing Company.

First printed on Education.com with permission of the Autism Society.

http://www.education.com/reference/article/explosive-behavior-asperger-syndrome

Judy Endow, MSW is an author and international speaker on a variety of autism-related topics, is part of the Wisconsin DPI Statewide Autism Training Team along with being part of Autistic Global Initiative (AGI). She is a board member of both the Autism Society of America, Wisconsin Chapter and the Autism National Committee. 

Judy maintains a private practice in Madison, Wisconsin, providing consultation for families, school districts and other agencies. Besides having autism herself, she is the parent of three now grown sons, one of whom is on the autism spectrum. 

In her spare time Judy enjoys expressing her thoughts and ideas by creating one-of-a-kind hand-built pottery sculptures and painting with acrylics. Please visit www.judyendow.com for more information, to view artwork and to read blogs.

Her first book, Making Lemonade, Hints for Autism's Helpers (CBR Press, 2006), shows how Judy has used the lemons of her autism to "make lemonade" in her own life. Paper Words, Discovering and Living with My Autism (AAPC Publishing, 2009) was 2010 International Book Award Finalist in Autobiographies/Memoirs.

Judy has also received the 2010 Autism Society Media Excellence Award for her DVD The Power of Words: How we talk about people with autism spectrum disorders matters! (AAPC Publishing, 2009). In addition, she has authored the annual Hidden Curriculum Calendar for Older Adolescents and Adults (AAPC Publishing 2009, 2010).

In addition, Judy has authored Outsmarting Explosive Behavior, A Visual System of Support and Intervention for Individuals with Autism Spectrum Disorders (AAPC Publishing, 2009 which is currently Book of the Week  and on sale!) Please join Judy Endow in celebrating her being "Author of the Week"!; Practical Solutions for Stabilizing Students With Classic Autism to Be Ready to Learn: Getting to Go (AAPC Publishing, 2011); and Learning the Hidden Curriculum: The Odyssey of One Autistic Adult (AAPC Publishing, 2012).

Have YOU heard about the FREE Vision Screenings!?!?

Oklahoma Vision Development Center is offering FREE 

Developmental Vision Screenings for the remainder of the year. These screenings will test the child's acuities, eye tracking, eye teaming, and visual processing skills. 

Screenings are Scheduled for:  

September 24-27, 2012  8:30am-2:00pm

September 28, 2012  8:30-11:30am

October 15-18, 2012  8:30am-2:00pm

October 19, 2012  8:30-11:30am

 December 17-20, 2012  8:30am-2:00pm

  December 21, 2012  8:30-11:30am

What you need to know: 

1. You must call 918-633-9085 to schedule an appointment
2. Children must be between 6-18 years old
3. Children must have had an eye exam in the past 12 months                              (If they haven't had one, we can schedule an eye exam for you) 

Located at 4520 S. Harvard Ave. Ste. 100  

www.tulsavisiontherapy.com

918-633-9085