"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!

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!

Sam and dad! 

Just look at him and smile :) (Journal #6)

Today was a hard day with Sam. So, what I resolve to do today, is not write about it, not dwell on the stress and difficulty of the day, but to put my favorite picture (from Disney World) in. It just makes you smile at the delight on his face as he gets wet from a fountain. Enjoy :)

Sugar and Spice, and School, oh nice. (Journal #5)

Soooooooooo...................Sam has finally started preschool (early childhood special education program). We had to meet, do the IEP (Individual Education Plan), sign it, meet and then start. I love his teachers and case manager. I feel he is in really good hands. He is in a program that has 10 regular education children and 5 autistic children. They are very well staffed. One community (regular preschool teacher from the district), one special education teacher, a speech teacher, and two para's.

We were so excited for Sam's first day. Of course it was raining, so no real good outside shots for the first day of school. We took Zach to school, and then decided to have breakfast together before taking him. Sam has been infatuated with Krispy kreme. We have only been inside once in his life, and have only gone through the drive through once (thanks to dad being on a health kick the last two years), but he always remembers the Krispy Kreme trucks. When we are on a freeway, and whenever there is a white truck with red and green wording, he always says "dut tut". He has almost become obsessed with it. Soooooo....I added to the obsession today. We actually went inside (of which I am sure the sugar high will be appreciated by his teachers).

Sam was amazed at the whole assembly line. Eating was hard for him today. Everything had to be lined up right at the table. He looked at his donut and finally started eating, with most of it falling to the ground or becoming drool down his shirt. Half way through he noticed that there was part of the donut that was darker than the rest. It started to really bug him. He continiued in his distress over it by screaming "don't, don't", of which I was finally able to clarify as "He didn't want to eat that part." He started throwing napkins on the floor, of which I quickly said to him "Would you like me to get rid of the acky part?" He then nodded yes. I pulled the browned part off, handed it back to him and he instantly turned into a smiley happy boy, as if nothing had happened.

When we got to preschool, he instently clammed up as we walked in the door. He turned his body into me, pressing me so hard, I thought I might fall backwards. He refused to let me hang up his coat or backpack, he was not going to take it off. By now, most of the children have arrived and are at assigned tables with puzzles, playdoh, etc... I am trying so hard to entice him, walking him to other places. It all ends up with the "teridactle scream" (I don't know how to spell it, but it is supposed to be the spelling for the teridactle bird ( a very high screech). Sam makes this sound all too well. The day went down from there, but am too tired to type tonight and will continue thoughts and reflections of his first week in school later.

Toddler and beginning preschool time with Sam (Journal #4)

Days can be hard with Sam. Driving to the grocery store has even become a challenge. Sam has this incredible memory. He remembers everywhere we go and how we go. Routines and rituals had started taking over our lives. To go to the grocery store consists of Sam deciding who would sit where in the van and how, to what direction we take to get there and even whether or not we should stop at a stop light (don't worry, we stop when directed). When one looks at Sam in one of his routine acts, it may appear that he is a spoiled brat, when in fact, how many children have to have their way without an extinsic reward? What does Sam gain by us turning the way he wants at an intersection, because that is the way he remembers us going one time, now it has to be every time? Sam is almost too intrinsicly motivated (usually a teachers dream). He has nothing to gain, other than it provides safety and security in his world as he knows it.

Once we get to the grocery store, or wherever we are going, we then have the stuggle of that experience needing to be the same one it was the last time we were there, which I can barely recall, but Sam won't let us forget.

Onto Sam's Speech
While Brent and I feel that we have been able to interpret a lot of Sam's few words up to this point in Sam's life (1-2 1/2 years), many can not. It has become a huge issue at daycare with Sam getting his needs met as well as Sam being frustrated with his peers. The consequence...screaming. Sam screams all the time. For everyone and everything. Ruthie, Marla and us have been trying very hard to get him to "use his words".

We've also noticed somewhat that we really need his attention for him to understand things we say. We will tell him to look at our eyes, but it doesn't work, so I noticed daycare has been saying to him "Sam, look at my nose", and he seems to respond more frequently to that.

What we have thought the screaming was for, speech, has really proven more for other things as well during this time period. Samuel seems to be so sensitive to many things. There are times we are in Target, and there may be another baby crying or screaming, and he covers his ears, saying in his best possible way "too loud". Whenever we are driving next to loud vehicles, it always turns into screaming.

The sensitivity to sun has always been an issue, especially in the car, but one thing I have noticed now that he has been able to walk around the house more, is that he gets very upset when he walks by windows in the house with extra sunlight coming in.

Sensitivity with different clothing material has been somewhat noticed. He has to have clothes rub or be a certain way for them to be comfortable, and always make sure you put socks on right away, or he will let you know!

One thing that has developed more since 1, is his drooling and what I have labeled as "mouth issues". His mouth issues includes him packing his mouth with food. He is quick too, even when you think you are watching, he all of a sudden has a mouthful of food. He also has a very difficult time using utensils. We work so hard, but it is like he never gets it.

London Bridges falling down
It really should be "Samuel Cottington, falling down". We have had grave concerns about Sam's motor ability or lack thereof. Sam falls all the time. Head first too. It has always appeared to us that he has no concept of pain. He will fall and knock his head so hard that we think we are going to the hospital, but he just jumps up and runs like nothing happened. It has truly amazed us.

The hard thing about it is that since he doesn't understand pain, it is hard to teach him safety issues. Example being that going in the street when there is a car coming, could mean you get hurt if not paying attention. Samuel doesn't understand how a car could hurt you.

These are just a few additions to my blog. It is just to review where we have been with Sam in this journey called Life, and to where we are going. That is all for now. Peace.

Back to Work (Journal #3)

In the fall of 2002, I had to go back to teaching, as maternity leave was over. I was not feeling good about it. I had interviewed and found a montesouri childcare and preschool that was very clean, and appeared appropriate and safe. JoAnn was Sam's main caregiver, but the lead teacher position changed 2 times in four months. I didn't like that so well. JoAnn didn't like it so well, as she confided in me. She made it very clear that Sam was one of her favorites. She told me repeatedly that he was a very good baby. She said she liked holding him, because he didn't cry or demand her attention. However, there were other babies whom I know did take attention away from Sam because he was so easy. JoAnn would tell me that she knew Sams routine, and everything always went fine with his routine. He liked his feet rubbed after his bottle. He wanted floor time before his nap, and he didn't want it too dark at nap time, so she always left the door cracked for him. Whenever JoAnn was not there to care for him, if she was sick, I had major reports that things went terrible on those days.

Well, JoAnn left the montessori because of too many changes with lead teachers, and we left shortly thereafter. We left not because of JoAnn, but because he was so content, I had a fear that he wasn't being held much because he didn't need to.

A few months later I found another daycare that was wonderful, closer to home, and one that my older son, now in 1st grade, could attend too. Sam quickly found a favorite teacher again, Marla. He was now in the toddler room. Sam would not attempt to talk. He communicated by humming songs when happy, by taking our hand and leading us and his teachers to what he wanted or needed, and then by screaming. He screamed all the time.

Ruthie was Sam's lead teacher at the time of enrollment. She was wonderful, loving, yet firm with Sam. She communicated clearly to me daily the ways she was developing communication with him. She encouraged me to say to him at home to "use his words" whenever he screamed. What she didn't know, and I didn't tell her, was that we had already been doing that forever.

Transitions were difficult for Sam in the toddler room. The teachers figured out ways to handle him. Nap time was particularly hard. They created a way where they would get everyone down for a nap, while Sam finished eating at the table. He took forever to eat. Ruthie and Marla were usually done getting everyone down for a nap by the time Sam would get done eating. This then allowed Marla to handle him, read to him, rock him, get him to his cot in a one-on-one situation, that is not afforded to all the toddlers. Because of this extra time alone with Sam each day, I believe it is where Sam and Marla became close.

Marla would always tell me when I picked him up, about how he played by himself all the time, and would scream when other kids would come in his space. Marla did not feel this was odd, because she felt as though she understood what Sam was thinking. She would always tell me that he didn't play with baby toys, and that it always appeared to her that Sam didn't have time for the other kids his age because he was more mature. I don't know if she would tell me this to make me feel better, because she knew that myself, and other teachers and the directors there were concerned about his screaming to communicate.

Needless to say, the experience in that classroom was wonderful, and I am amazed at how Ruthie and Marla worked around Sam's rituals and needs.

Sam's Early Signs, the first few months. (Journal #2)

Sam or Samuel, is 3 1/2. Sam was educationally diagnosed with Autism at 3. We have been on a waiting list with a regionally known center for Autism to receive the medical diagnosis for 6 months, and will finally receive our assessment in 2 weeks. We are not denying that Sam is Autistic, as we are now even more convinced that he is. We are simply seeking the medical diagnosis to be able to receive additional services, support groups and educational assistance if needed.

We have always known that there was something special about Sam. At birth, he decided to enter this world with a bang! Sam was the second of 2 boys. His brother was almost 5 at the time of his birth. He ended up being an emergency c-section, as his head never came down because it was his neck that was trying to come out first. Our doctor told us that he would have never been born naturally after the c-section. Upon arrival, Sam thought that he should make it clear that he was not just a tiny newborn, but a life full of excitement, including a birth poundage to that nearly of a bowling ball. Sam was a whopping 9 pounds 8 oz.

He hardly cried in the hospital, and I insisted that he be in bed with me the whole stay. We didn't need to send him to the nursery in the evenings to get sleep, because he was so good. But...I never really slept. I just watched him next to me in bed ( I know, he should have been in his bassinet, but there are side rails in hospital beds you know!) and kept thinking how blessed we were to have another beautiful boy. He was gorgeous! His skin was a beautiful tan (oops, found out later it was the jaundice) and seemed to be so content.

Nursing wasn't a breeze, he didn't really fuss much to eat, but when he did, he seemed to latch on only a little at a time and refused to face me or look at me. He didn't seem super interested in the affectionate part of nursing, just got what he needed and then he was done. Would give you that look like, okay, I am through, put me down. Shortly after discovering that Sam was Autistic, many of my closest friends have told me that I said many times, when nursing Sam, that I thought he was Autistic because he wouldn't look at me when I was nursing him.

Almost 6 weeks after birth, our pediatrician said that it appeared that Sam had Torticollis, (Torticollis (wry neck) is a congenital or acquired condition of limited neck motion in which the child will hold the head to one side with the chin pointing to the opposite side. It is the result of the shortening of the sternocleidomastoid (neck) muscle. In early infancy, a firm, non-tender mass may be felt in the midportion of the muscle. The mass will go away and be replaced with fibrous tissue. If untreated, there can be permanent limitation of neck movement. There may be flattening of the head and face on the affected side). Following 4 months of physical therapy, he seemed fine. I was very quick to say the reason for him not looking at me when nursing was because he couldn't, while in the back of my head I thought there was something more.

Sam was very, very content as a baby. Acted as if he didn't need to be held. I actually found myself holding him even more, to remind him that he did need me to hold him. I was blessed in that I took off from teaching from his birth day in February till the end of the school year, which then allotted me the entire summer also for my maternity leave. The time also allowed me to spend lots of quality time with my oldest son, as Sam was not very demanding.

Our Sam I Am (Journal #1)

This is an attempt both personally and publically to share our world of Sam. It is my hope that this will be a place for parents of Autistic children to share their experiences if needed, and for our family to better understand the world of Sam. Each post will reveal events that occur in Sam's world, with an attempt to understand his perspective and to share our struggles and celebrations of raising an Autistic child.

The ribbon is the symbol used to remind people of the puzzles that fit together in the life of an Autistic child. We may never understand the who, what, where and why of our children with Autism, but what we will ALWAYS understand is that without them, our own puzzles would never be complete.