Friday, September 30, 2005

Sam and dad! Posted by Picasa

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.

Monday, September 26, 2005

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.

Friday, September 23, 2005

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.

Thursday, September 22, 2005

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.