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!

Sam and Me 

The period at the end of our sentence (.) (Journal #8)

While we have had Samuel's educational diagnosis since last spring, we have also been pursuing a second opinion of sorts...the medical diagnosis. Not that we have been in denial of Autism, not that we haven't trusted the psychologists, school staff, and doctors who have seen Sam, but just to confirm things, or put a period to the end of our sentence of sorts. I say sentence, as Brent and I haven't truly "questioned" the diagnosis, as we have known and understood Sam all too well. We have truly believed since the first mention of it. Yet we did need some finality of sorts.

Our doctor told us he had enough tests and results between school, psychologist and himself that he could make the diagnosis, but really recommended to us last early May, that we seek a medical diagnosis from Fraser Child and Family Center in Minneapolis. He said it is the goldmine of Autism in the midwest. We found that out when we were put on the waiting list for 4-6 months.

That long wait finally came to an end this last Tuesday. Brent's mom was so gracious to lengthen a current stay with us by going to the appointment too. I was very, very, very anxious for this day to come. We were actually in Denver the days before, which was good for me as it kept my mind away from the anticipation. Driving to the appointment on Minneapolis far east side into St. Paul was agonizing enough during rush hour!! Thank God we don't have to do that every day like some people.

We dropped Zach off at school a few minutes early that day, in order to make the appointment in time. We always do a "foot prayer" before he gets out. He kicks his foot up to the front seat, I grab it, then we say a simple quick prayer. Something like "God please shield him and protect him, but also let him be a light of your love and grace." yadyadyada.......but that morning I didn't. It might have been all that was on my mind. I watched him get out of the van in the cold morning air, as the cold streamed off his lips saying good-by out the door. I also felt cold, worried, kind of, as it hit me... we were off to find our period (.). I told Sam to give me his foot, of which I hadn't done before.

The arrival at Fraser was warm and welcoming. It did not have an institutional feel as some places and hospitals. The morning went on, and before we knew it, the testing and assessment was complete.

Grandma Jan stayed with Sam, and Brent and I went with the psychologist and social worker. The psychologist was gentle, clear and empathic. She drew a diagram on the dry erase board explaining Autism, and the Autism Spectrum Disorder(ASD) scale. This helped make things very clear for Brent and I. She told us that there are 5 main areas on the spectrum. One is PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified) which is a diagnosis given to individuals who have some Autistic symptoms, but not enough to be diagnosed Autistic. These kids will sometimes need additional services in schools, etc... Two other disorders on the spectrum are degenerative disorders, which they told us, will possibly come off of the spectrum in the future. Sam was not those. Another spectrum category is Asperger's. Sam was clearly not this. For me and my colleagues in teaching, we sometimes refer to Asperger's as "a touch of Autism". These kids are incredibly intelligent and have some of the Autistic symptoms. The last disorder on the spectrum was Autism. They told us that was Sam. Our Sam I Am. That was our period (.) at the end of our very long sentence.

While I can honestly say there is no question mark (?) for us, I can't say that sometimes there isn't an exclamation mark (!). You see, sometimes there is! We look back at Sam since birth, and we can truly exclaim, "that makes sense!" But............to keep things constant, to keep things calm and real.............we can absolutely now say, "there is a period (.) at the end of our sentence." The good thing is, that a period is only the end of a sentence. It is not the end of the paragraph on Sam, not the end of his page or chapter. You see.....it is just the beginning of his best seller called life that will produce many books. Maybe mysteries, drama's, and comedies to name a few. Some will be sequels and some will be cliff hangers. The one true thing we know, is that we will stay a close family, that we will keep Christ first in our lives, and then.......no matter how the last book ends here on earth.........that there really will be a happy ending at the end of this!

It Melly in here, go mom! (Journal # 7)

Since Autism is neurological, many children are impacted with huge sensory issues. Sam has many of those. He is very sensitive to the way things smell, to the texture of the clothing he decides to wear, to pain (not feeling any), to sight (doesn't like sunny places always), the list could actually go on.

One of his sensory "issues" which I find humor with, is his smelling. There are times he won't walk into a room in our house because he says it is "too melly mom". Now, it really could be too smelly, depending on the last time I cleaned that room, or the last time his brother found the dirty clothes for his socks, but, many times he smells little things I hardly notice.

Every time I make him try a new food he has not tried, he has to study it, look at it, and then he puts his nose right on it to smell it. He might be playing with toys (like new plastic ones), and he will smell it for minutes on end and sometimes end up licking it. He is so silly doing it sometimes, that it just makes me chuckle. He seriously looks like and sounds like a sniffing dog. He will be down on all fours, sniffing the toy on the ground.

Last week, we did a Kmart run together. While I always think Kmart has an automotive odor to it, :), Sam was definitely onto the smell scene. We walked by handbags first, as we were looking for a new backpack for his brother for school (go figure, the zipper broke on his old one the first day of school, that's what I get for buying cheap). When passing by some pleather purses, he grabbed my hand to stop me from continuing our Martha Stewart adventure. He didn't say anything, but as I turned around, he was hunched over a purse, sniffing the strap up one side and down the other.

Then we proceed to the automotive department (so I could check my senses and see why I think Kmart always smells like that...no really...had to get washer fluid). As I round a corner with Sam following me, I turn to see him stopped at an end cap display of Turtle Wax, with his nose virtually sniffing all over the plastic case of it. As I get ready to pipe in and tell him "let's go", it was too late. Before my mouth could utter a word, he licks it. Of course my first reaction was to yell at the poor kid. I said "Sam, what did you lick that for?", and he innocently replies "it melled". Needless to say, I won't be waxing my car anytime soon.

Yesterday we enjoyed some errands together and ended up at Target. We were cruising the health care section getting new toothpaste, but you could smell "make up" type odors. He immediately started saying "It melly in here, go mom!" I couldn't realistically go when he wanted as I couldn't find everything I needed. Of course within seconds it turned into screaming...a blood curling scream. While people always look and give that "get you child under control" stare, I have learned, or we have learned I should say, that unfortunately, nothing soothes his melt downs. They just have to run their course. Now, I didn't obviously stick around that department, but I did need to tackle other items in the store as quickly as I could and get out of there.

If there is one thing I am learning about all of this, is that how strong I have become at ignoring others. I used to always worry about what other people were thinking, but you can't anymore, I have a beautiful boy with special needs. And, I can honestly say that I don't care what they think.

As for me and my boy, if he says "it melly in here, go mom!" I am probably going to go a little faster next time!