"I'm not naughty, I'm Autistic" (Journal #11)

While we will never make excuses for our parenting of Sam, it is true that a lot of his behavior looks naughty when he is having a hard day....when he is having what Brent and I call "An Autistic Day".

I am frequently reminded of what it looks like on many outings to the store, when I get those "glares":
- because he is tantruming because I won't let him walk, because he is a runner (runner awayer that is)
-because he is screaming and clawing my face because I won't stop the shopping cart so he can sit in the middle of an aisle and play with the carts wheels like he likes to do sometimes (forever, and I don't always have forever, although I could live at Target).
-because he is talking extremely loud saying the same sentence over and over again until he gets the response he wants from me.

Glares, yep, get them a lot. People are just rude. I get tired of them looking at me, like I can't control my child, or I have spoiled him and he always needs his own way.

We actually have a business card we have ready to give out at all times from the Autism Society of America. It reads simply this:

My child has a neurological disorder called Autism. He is not being naughty and we are not being bad parents for not reprimanding him. Children with Autism can often behave in an unpredictable manner because they find it hard to cope with many everyday situations. He is quite simply doing his best. Please be patient.
For more information about Autism please visit: www.autism-society.org

We are thankful we don't get those "glares" from family. They have been wonderful, supportive and so understanding. After coming off of family time at Thanksgiving, we really only had one big "melt down" as we call them. He appeared very "naughty" at the end. When Sam does things that appear to be intentional, like destroying his brother and cousins puzzles, it is that... intentional. However, what makes it different, is that it is intentional for reasons we don't know or always understand. For example, we do know that with Sam's SID (Sensory Integration Dysfunction, typical with Autism), that he likes to scream, he likes to be tackled by his brother, he likes the deep pressure. Therefore, many times he does mean things to his brother so he can scream...so his brother will tackle him out of anger. But, when it is interrupted by Brent or I picking up Sam (the only way to get him out of that behavior is to remove him from or redirect him from the situation), it takes his "plan, ritual, routine" that he wants to have happen and ruin it in his eyes. He will scream, hit, kick or whatever until he is tired. It does no good to talk to him when he is this angry, or to put him in time out. They don't understand time out.

What does work, is letting him have his melt down. Then, at a later date and time, creating a "social story" around what happened. Below is a web site that explains and gives good examples of what they are.
http://www.autism.org/stories.html
The only thing at this age is that social stories should be presented a little different. It is important to have the child be a part of you creating it and making pictures for the story, not just the words you read. (Thanks Lee Ann and Jenny for this advice and input).

Stacy, thank you so much for the compassion and love you showed when Sam had his "little outburst" at Thanksgiving. You asked exactly the right questions, which is what Brent and I are very open to, and want you all to do. Not only did you display true love and care, but you clearly asked what would be best in that situation if it happens again, and if everyone should leave the room. For that situation, it was just a matter of Brent removing him and restraining him until he was calm (sorry Kelly for Alexis getting knocked down by Brent coming through, but she would have gotten hurt worse by Sam throwing something again if he didn't take him right away), and a social story followed the next day at a time when he was very calm, and was also repeated. And Stacy, you were also very correct in that it is best if just one of us deal with him and give the directions, as the more people yelling, telling him what not to do or do, the more confusing it is for him. Also, if we yell or raise our voice, he does the same thing but it escalates even more.

Some things that we don't want family to always worry about or feel like you need to intervene (unless we are getting hurt), is that when he can't use his words correctly to make his request or point and he gets angry. For example, during Thanksgiving, there was a point that Sam was not getting understood and chose to hit me several times (just my legs). I was choosing to ignore him..... a) because it didn't hurt b) he is a little different than other kids in that if I were to have responded with "we don't hit", he will not care because he just has in his mind what he wants. If I respond to him hitting me, he is getting the attention from me that he wants so I will figure out what he is saying. He then uses me to communicate instead of himself. So, sometimes it is "wait time" and holding out that we are doing to see if he can figure it out. That is what we have always done, which we have been told, has probably helped in the great language he already has. So, when Brent and I are right there, witnessing the behavior, if we are not addressing it, there is a reason from experience that we aren't. The incident where he was hitting me, involved someone else telling him to stop, which in turn, solicited a response from Sam that was him screaming "no". He wanted me to talk to him (in his head). I wasn't responding, the other adult was, so he wasn't going to stop. He then started hitting more because he was mad. That same situation happens to me on a daily basis. When I tell him to stop, or to use friendly hands, 99% of the time it escalates. When I ignore it, it stops much more quickly and then he is calm and I can encourage him to use his words.

Below is an excerpt from another parent of an Autistic child who wrote a publication called "Living with Autism":

Over the years I have come to realize that most people do not know what autism is, yet they know what Down Syndrome is. Maybe this is because autistic children 'look' like everyone else. The thing is they aren't like everyone else. This is one of the things that makes bringing up an autistic child so hard: the lack of understanding, by others, of their condition.

'Research has found that parents and families of a child with Autism are under greater stress than those with Down Syndrome or who are physically or mentally handicapped.'

-Autism News, Sept 2002.

Quite often an autistic child, in the eyes of an uninformed person, would be seen as naughty and out of control. The fact is these children don't know how to be 'naughty.' They cannot use their brain to manipulate a plan to misbehave. What they are seeing is a child who has a complete fear of the world. They don't understand the world as we would. They don't understand that if they cross the road without looking they could be run over.

Autistic children have to be taught EVERYTHING. Nothing comes naturally to an autistic child. 'It is important that everyone - parents, extended family, teachers and friends - understand that children and adults with autism are not like average people. The do not think in the same way and they should not be 'treated' like everyone else.' -Dr. Richard Eisenmajer (psychologist)

So.........even though Sam will look naughty sometimes or many times, how we will handle it may be a little different than when Zach or others are naughty. If Sam does something mean to one of his cousins, please remember that if we don't consequence him in front of you or in a way that you felt was properly compensated, please don't think that we didn't care or didn't think it deserved a consequence. Just know that we feel just as bad about what he did, but what we do with Sam may reflect it a little differently.

While I would never put one of these pins on Sam, people actually make these for parents because of the way their child looks and behaves in public:

I think Brent and I will stick with the cards. We love you all and thank you so much for being understanding, for not being afraid to ask us questions, for not acting like he isn't Autistic, he is, and he will have to be treated differently, and you have exemplified that.....................and for not being judgmental. We love you all.

Reality hits....hmmmmmm....... (Journal #10)

So, for me personally, I believe that Sam is very intelligent and very much a three year old (almost 4). But, this past week has been somewhat of an eye opener for me.

The first reality hits...............sometimes people say the darndest things. I had a friend recently drill me about the preschool program that Sam is in. As I have shared in earlier journals that Sam is in early childhood special education. He will receive services for as long as he needs. Because of his Autism, he receives services while in a preschool program in our district. The program is a wonderful program. The classroom is made up of 10 regular education preschoolers and 5 autistic children. The special education staff and regular education staff team together in such a way that you don't even know who is who.

My friend who was questioning me about the program kept saying through the conversation "So do these parents know that their kids are going to be in a class with Autistic kids? How do they "sell" that to the parents to pay and have their kids attend that class?" Now, first of all this wouldn't have been so offensive, except for the following..... a) this was a good friend asking me this b) she kept on asking several times, as if so concerned as to the rights of the "regular" education parents knowing c) came across as if she would never put her kids in a program like that. I don't understand why parents don't want their children to learn about different abilities, different ethnicity, different physical structures. To protect our children too much is to unprotect society and all we are. The more we understand our differences the more we will see how we are truly the same "human spirit".

Hmmmmmmmmm........ this really bothered me after I left her. I kept playing the conversation over and over in my head, and also remembering her body language. My answer to her was that they didn't need to know, she in return could not believe it. Hasn't our world come farther than this? As a teacher and understanding inclusion, mainstreaming, etc.... all children have a right to learn to their fullest potential in an environment conducive to their needs. I CAN tell you that Sam will learn to his fullest potential by practicing, learning in a classroom environment, rather than in one-on-one ABA therapy as many parents of Autistic children prefer. His chances of being in a mainstream kindergarten with assistance are much greater than if he did not have this opportunity.

I then started to get myself even more angry as I pondered our conversation. Are not most people familiar with the ADA (American Disabilites Act)? Don't they understand confidentiality. The fact that my child is Autistic and in a preschool with hers or other children does not even need to be told to her essentially. Hmmmmmmmmmmmmm...............people make me think. And...reality reminds me just who real friends are.

The second reality hits.........so, this past week I was afforded a couple opportunities (just by chance) to see Sam with other 3 year olds. I don't usually get to see this, as I don't have any other friends with kids his age right now. It was somewhat sombering for me. I really do believe he is so smart. Besides some of his fine motor, balance issues, and speech, he seems so 3 to me. But then I saw "other" 3 year olds. The way they talk, move, respond to their environment. I must say it was the first time in a very long time I saw a difference, and understood that he was different. Hmmmmmmmmmmmm.........

The door....and Autism 101 (Journal #9)

Sam forever enjoys kicking his bedroom door when it is closed sometimes. We are just waiting for it to break down. When he kicks, he lays on the floor vertical to it and just kicks forever. We have since, started to learn more about that and many other things he does.

Our school district encourages all parents of Autistic children to attend classes every Monday night for half a school year. They call the classes "Autism 101". They are really great classes. It is giving Brent and I a chance to connect with a few other families. The district has 22,000 students in it, and there are over 100 students with Autism.

So far the experience has been wonderful. Of course, Brent is the star student, always asking those questions no one knows how to ask, and of course offering up some theories that make the speakers agree. He is such a suck up. :) I love that so much. He just cracks me up. The neat thing about all of this, is that we are both acting as students in this whole process. Wanting to learn and be educated as much as possible.

The last sessions have been on behavior and discipline. Sometimes we have a hard time knowing how to discipline and what to do if we need to punish Sam. He is so happy and bubbly sometimes, that he puts on that smile after doing something naughty. Or he often laughs when and while he is doing something. What is crucial for us to remember (even if it is making us mad that he is laughing, etc..) is that he can not process or filter even the right emotion too. He may be very angry while he is hitting, kicking or running away, but it may be presented as laughter. In the past we would discipline him by putting in time out (which he never sits or stays). It is so different than Zachary. Even though Zachary too, is very strong willed. We have since learned from the psychologists and specialist that work with us, that time out is not appropriate for Sam (will explain later).

Here are the things we have learned so far at "Autism 101". We have learned that discipline is very different for Autistic children. They don't understand consequences. That really helps us understand a lot of our frustrations with Sam up to this point. They may be able to look like they understand, they may be able to repeat what you tell them, but with Sam the behaviors continue to return. Consequences are a huge no with him, we are told.

So what do you do? With the hope of not boring, but helping to understand Sam, here are the things to do when disciplining...

Determine what behaviors are a problem, and only address those behaviors with Autistic children. Behaviors must fall into one of the categories below:
1. Is it dangerous to self or others?
2. Is it causing property damage?
3. Does it interfere with learning (self or others)?
4. Is it annoying or disruptive?
If it is not effecting any of those categories, then don't address it.

T-E-A-S-E: An acronym to remember why these behaviors occur with Autistic children.
T- is for Tangibles. To get food, obtain activities, get toys, or protect personal space.
E- is for Escape/Avoidance. Difficult tasks (bath time, hair cuts, picking up toys), Change in routine, Interruption in a desired activity, avoid hugs, affection, or attention.
A- is for Attention. Obtain hugs, Parent Attention, Interactions from others.
S- is for Sensory (Self reinforcement or stimulation). Obtain sensory input, rocking, head banging, hand flapping, spinning somersaults, finger flicking, leg banging.
E- End of reasons. Meaning, once you find out the reason or function of the behavior, it can bring an end to it, or an end to your concern for it.

10 Strategies to Respond to Challenging Behavior with Autistic children.
1. Communicative Replacement - A strategy that teaches a communicative response in place of a problem behavior. An attempt must be made to make the problem less effective in achieving the desired outcome (toy, activity, etc.). The first component is achieved with communication training and the second is achieved by not allowing the misbehavior to have an effect on the environment or demand. These two components must be applied simultaneously to be successful. (In lay terms: simply by showing what the child should do in that situation, role play, act out.)
2. Structuring the environment - Set up and organize the home. Boundaries help establish expectations for the environment. Assign seats in the car, at the dinner table, in front of the TV.
3. Visual Schedule - Use of objects, pictures, written words to inform a child of activities that will occur. Examples- trip to dentist, bath time, starting a new school or routine.
4. Collaboration - The reponsibilities of a task are divided between parent and child. When using collaboration, the parent shares responsibility for task completion with the child. The purpose of collaboration is to increase the probability of task completions and permit earlier completion while delivering (positive) attentions during engagement.
5. Tolerance for Delay - A strategy that helps children maintain participation in an undesirable activity for increasing lengths of time or waiting for a desirable activity for increasing lengths of time. Example- Eat two more bites, then you can go outside. Keep cleaning, put two more toys away then you can watch TV.
6. Prespecified Reinforcer (nice word for bribery, it's OKAY to do with Autistic kids!!!) -A strategy in which the child is told or shown what reinforcer will be received when task is completed. The exact work requirement is specified as well as the exact reinforcer to follow. Use statements like: "If_______, then______." or "First______, then_____."
7. Preferred Item as a Distracter -A strategy presenting a highly desired item (toy, food, activity) to a child during a difficult or disliked activity before challenging behavior occurs. The preferred item is intended to distract the child from conditions that provoke challenging behaviors.
8. Warning before a Transition (3 step warning) -Before a child is expected to end and activity and transition to another, the child is given several visual and/or verbal warnings.
9. Choice Making -A child is given a choice of 2 options. A child can make choices between desired alternatives as well as less desired alternatives (pick up blue blocks or red blocks). Choice making offers control that they need for security.
10. Desensitization -A strategy used to lessen or diminish sensitivity to situations or sensory input that are difficult for a child. It is making sure a child has gradual exposure to a situation. Desensitization can be used when a child's behavior is to escape or avoid a particular activity or when a child obsesses on an activity or item.

Simple Guidelines to Follow.
1. Try to determine the function of the behavior.
2. Look at what is reinforcing the behavior.
3. Pick a strategy that addresses the purpose of the behavior.
4. Teach a Communicative Replacement. Almost always the best idea!
5. Sensory behaviors are the hardest behaviors to address.

Avoid Yelling or Confrontation
Why? Children with Autism have a hard time understanding nonverbal-communication such as: eye gaze, facial expressions, voice tone, gestures.

Stop Talking when things get bad
Why? Because children with Autism do not understand spoken language very well. Adults tend to increase their talking when behaviors escalate.
Being silent gives the student a better chance to focus, calm down, and decrease the probability of someone getting hurt.

Distract and Redirect
Children with Autism do not understand cause and effect. Distracting a child from engaging in a negative behavior and then redirecting to a more appropriate behavior (with physical and verbal cures) is more constructive. Once the child is engaged in a positive behavior, praise them. Threatening or giving negative consequences have little meaning or purpose to them.

Back to the door..............while it is annoying and can cause property damage (on the behavior check list), we have been able to determine that it is a sensory need for Sam. He loves the sound, he feels good from the pressure and rhythm.

(These are all notes from Brent and I taken from our districts Autism Team.)

From our resources at Fraser, a wonderful place that our doctors and others call the goldmine of Autism in the midwest, we have also been educated on time out with Sam.

They told us that Sam will not understand Time Out like most children. That for us to use time outs, should be to help Zach. We will have to discipline the two of them differently. However, Dr. Pederson told us, that we should occasionally (when Zach is around) use Time Out to show Zach we are giving him consequences for his behavior, even though Sam will not understand it the same. That is going to be one of our biggest challenges, parenting them, disciplining them, which will have differences. What won't be different is how much we love them both!