Reaching Charlie - One Family's Fight Against Autism

Homeschooling

2011-08-17T03:38:00.000-07:00

In January of 2011, we withdrew all three of our kids from school. We had three main reasons:

1. The kids were afraid of school, Charlie was afraid of kids on the bus and we were having to drive them to school every day, plus Charlie was having migraines and throwing up before school, although they would tell us that he was fine during school.

2. Jon and Charlie were not making decent progress in school. Jon went from a's and b's (with a lot of struggling) to F's. Charlie was consistently at the basement of his grade level.

3. All three kids hated school.

So, we took the kids out. I found a cyber charter school called k-12.com. Their PA branch is called Agora Cyber Charter school and I talked to Chuck about it and he was very willing to go with me and withdraw the kids.

The changeover was strange. There was a lot of paperwork. We did not get resistance from the school, but then they thought we were moving anyway, so no big deal. The kids started getting computers, printers, books, art supplies, etc., from Agora and we began the gear up into home school mode.

I wondered how in the world I would be able to succeed with Charlie where the school and professional teachers had failed with him. Charlie had second grade vocabulary, but only just. He was missing so much and for so many IEP meetings, I had asked, pleaded, for them to take him back to second grade vocabulary, but they would always just humor me and send me in a different direction.

At the beginning of homeschooling, it was a different world. There were so many things to remember, different passwords, different sites for this or that. There was just a lot. But as time went by, Charlie stopped having migraines and I can't tell you the last time he threw up (and it used to be 2-3 times per week).

Doing school online is not a piece of cake. There is a lot to be done, a lot of teacher/classroom sessions for the kids to listen to with headphones and interact with. Like, about 25-30 sessions a week for all three. Try coordinating that! It was hard. Each classroom had a different link. I had to design a method for setting it all up. But I did and it has worked.

This year I thought briefly about doing a different charter school simply because they do not have the sheer quantity of online face to face sessions. Chuck and I decided against it because we feel that although it is hard to deal with, it's best for them.

So, this year Charlie is in 5th grade, but taking 2nd, 3rd and 5th grade classes. He is taking 2nd grade vocabulary and has been all summer long. He will also be enrolled in a program called compass learning, which is a cartoon based learning system. I am starting the kids in Math-U-See to see if we can gain some ground in math.

So that's it in a nutshell, feel free to ask questions. By the way, Charlie does still receive speech via the online school, too.

Charlie's E-Book is now available!

2011-04-23T12:04:00.001-07:00

Charlie is a kid with depths locked inside himself, but sometimes we get a glimpse. I didn't expect to find anything when I started downloading photographs of our trip to Pittsburgh. Boy was I surprised.

During the trip, we had a problem with Charlie, it began when he balked at doing anything other than swimming at the hotel. We dragged him to the Carnegie Museum and at the entrance he started, "The Charlie Dance."

This is where he digs his heels in and decides that he will make life miserable for us, until we give him what he wants.

He wanted my $400 camera.

I finally gave in and gave it to him and showed him, briefly, how to use it. I uttered a little prayer under my breath, that he would not destroy it. The things that I found on the SD card afterward were amazing.
I called him in and asked him to explain the photos and I have captioned them as he described them to me.

I love this kiddo.

Chapter 1 - Our Family

2006-11-09T15:09:00.001-08:00

This is a story about Charlie and about our family and what it is like for us to be parents of a child who has autism. Unfortunately, I can’t tell much about how it is for him to live with us, so this is all a story from my perspective. I am Charlie’s mom. My name is Janet and at this writing, in 2005, I am 38 years old. I have 6 kids. Kimberly is the oldest, she is 22, Rick is next at 20, and Andrew is 18. I was a divorced mom for 13 years until I met and married Chuck eight years ago. He is 41. Our first child together is Jonathan. He is 6 right now and is an adorable, bright, happy little boy, who seems older than his true age because he is so bright and intelligent. Charlie is almost 5, and since most of this story describes him, I will kind of skip him for now. Rachel is our last baby (Lord, Please! She’s the last one - right?); she is just one year old. She is a little doll who was walking at 9 months and can say to me, “Mama, here you go…” to hand me a toy. She’s just your average kid, but it is amazing to me.

We live in a tiny town that has about 400 residents. This is a very rural, mountainous area and although we live in the town, we are very isolated. The nearest Wal-Mart is nearly an hour away and across the border in New York State. We have two collies and two cats and a big tank full of fish. I am the dog person; my husband likes the cats and fish. We had 6 teddy bear collie puppies last year. That was wonderful.

We live in a large, Victorian house that was built in 1890. The yard is a half-acre which we have fenced-in for Charlie’s protection. We moved here from a large city in northwestern Pennsylvania. Chuck was offered a teaching position here and we pulled up stakes and moved. We are still adjusting to the small-town life. Chuck teaches physics and electronics, as well as being the technology coordinator for the tiny district. I stay at home with the kids. I worked until Jonathan was born and then quit work to be with him and the other kids full-time. In my working life, I was a legal secretary and a orthodontic assistant. I also worked as an office manager for an industrial photographer. He taught me to do digital re-touch and web design, as well.

When I met Chuck he was a driveline mechanic with dirt under his fingernails and strong, muscular arms. He was embarrassed about the dirt. I wasn’t. We hit it off right away; we love science, puns, bodies of water and each other. At that time, he was on the board of directors for a center for independent living. I was immediately interested in that kind of volunteer work. He asked me to sit in on a meeting. I did and was just thrilled to be part of such a group.

This was a group of people, who led by their President, Kathy, were trying to help people with disabilities get out of nursing homes. These were wonderful people, all of whom were coping with disabilities and they were doing great things for people. It was a small organization, which had been started out of Kathy’s bedroom. Kathy is a woman with a major disability (which has her in a wheelchair, but never slows her down) who saw a need for a center for independent living that was run by the people that it served, not run by officials who ‘knew what was best’ for the clientèle. By the time I came to my first meeting, it was a full-fledged center for independent living. I was voted onto the board and Chuck and I stayed on as members for about 3 years. Then came the kids and it became harder and harder to have outside interests.

I love staying home with my kids; I think it is important to them. We must live a lot more frugally on a teacher’s salary, but with the kind of salary my level of career brings in – it would hardly cover the day care. Not to mention the fact that jobs around here are pretty scarce. We break even, but with a child who has autism in the family, staying home has become a necessity.

Life, in our household, centers around the kids. We don’t leave them very often. There are few sitters that we would trust them with. We play games frequently with Jonathan. Charlie is just a little interested in the games, but still is on the fringe. Jon likes to play Cranium Conga, checkers and Monopoly. We tried mousetrap, but it made Charlie just nuts because he wanted to watch the balls run through the mechanism and it kept falling apart.

The kids are our first priority. We thought we knew how to raise happy healthy kids, and then we met autism.

Chapter 2 - Meet Charlie

2006-11-09T15:08:00.002-08:00

Charlie is a wonderful child, a child who never hurts anyone intentionally. He never lies or conceals anything from us. He is a good egg. When he was little I would call him my egg roll from the phrase, “with five you get an egg roll”. Egg rolls are my favorite part of the meal. That’s Charlie ~ the best part of the meal. Figuratively speaking, of course.

He is tall for his age group, blond and handsome with big blue eyes and a captivating expression. He does have a larger than average head, but it is not that noticeable, I am reminded of it only when the doctor does a well-child check up and mentions it.

Most of the time his face is smiling and happy. He becomes so overwhelmed with joy at times that he has to run around and laugh and let it out. But usually we don't know what he is laughing at. He is an extremely intelligent child who was reading small words at three years of age, although he was still silent. Charlie is six and has autism.

Charlie was the perfect baby. He is our fifth child, by this time I knew an easy baby when I saw one! Especially after his brother Jon's babyhood, which was very intense with colic that lasted for a year. At the time of his birth our kids were 18, 16, 15, and 18 months old. All except the oldest were boys. All had normal development and were somewhat early readers.

Charlie was stubborn in coming into the world, and was nearly 2 weeks past his due date when the doctor ordered a stress test that indicated that Charlie needed to be delivered quickly, but we were sent home with the instructions to come back for an induction in the morning. He was delivered after about 7 hours of labor. I had an epidural so I was feeling no pain. This was my first epidural in 5 kids and it was strange to be told that I was contracting and not feel it.

When Charlie was born I saw in the mirror that his body was two colors. His body was waxy white and his head was purplish. The umbilical cord was wrapped twice around his neck. I said to the doctor, “The cord is around his neck!!” and he replied, “I knew that it was around his neck throughout the labor.” He lifted it off and passed the baby to the nurse who blew oxygen past his face to pink him up. I do feel, to this day, that he knew that Charlie was in danger and did not do a C-section. I feel that Charlie suffered an injury that resulted in autism due to his deprivation of oxygen through 7 hours of induced labor. Another contributing factor was that I had been told by the OBGYN that continuing to take ibuprophen for a long standing herniated disk was ok. Ibuprophen, I later found out, is an anti-prostiglandin. It keeps labor from starting.

The doctor who delivered Charlie no longer practices and in fact, so many lawsuits were decided against him that the entire hospital went out of business. We didn't sue, "No one can pinpoint what causes autism", the lawyer told us after evaluating Charlie's records, "Could you prove that he has cerebral palsy? That would be something." We left it at that. The remark about cerebral palsy was just terrible.

Charlie did "pink up" within about 10 minutes of oxygen and latched on well t the breast. He had a perfectly round head and a little pointed chin. His eyes were so open; he seemed to see everything at once. He did not cry very much. As time went on we realized that Charlie was indeed a great nurser, breastfeeding for 3 years. This was mostly due to dietary problems. It was much longer than I ever thought I would want a child to nurse, but over the last 2 years was just mainly at night. It helped him sleep. Early on we determined that he was extremely sensitive to milk, even in my diet, so we steered clear of dairy products right from the start. This was not a new situation to me, because my other kids were sensitive to milk, as well.

Charlie was a very quiet baby. He didn’t sleep for long spells at any given time, but was just so good that it didn’t really matter. He could play by himself for such a long time that I thought he had an exceptionally long attention span. Charlie had severe separation anxiety that lasted until he was 3 years old. I could not leave him without him becoming hysterical. I could not even walk upstairs without him.

At 12 months old we started worrying because he was not talking or babbling. At first my husband thought he was deaf because he didn’t seem to have a startle reflex. He came up behind Charlie while he was watching T.V. and clapped his hands very loudly behind his head. Charlie didn’t react at all. I took it a step further and one day while he was napping on the couch I got out pans and banged them together above his head. Nothing. I recorded the pan banging session, but my husband didn't want to watch it. He knew how bad it was. We had his hearing tested and it was A-OK.

Charlie did not make any sounds at all, except crying. No cooing, no ga ga, goo goo. He would just sit quietly by himself turning a toy over and over or just looking at something. He had no words for Mama or Dada. He didn’t ask for anything. He did not point with his finger. He did not play peek-a-boo or patty cake. He would not name dogs or cats; he would not look out his car window if we tried to call his attention to something outside, like a cow. He did not even seem to know that we had two dogs.

I felt that Charlie was not developing as he should because I was not stimulating him enough, or maybe it was too much TV. I wasn't reading to him enough. I wasn't getting through to him. I felt the weight of his silence on my own shoulders, sure that I was doing something wrong with him. During moments when we were both quiet at home I felt that I was causing this lack of communication because I was being too quiet.

I thought he had good eye contact, and I think that he did, with me, but with others he would look through them or look away from them. To this day he avoids eye contact, even with me. The exception to this is when has just been exposed to a really big stimulation like a bath or time on the swings. Then he will make good eye contact for a little while. Sometimes he will stare into our eyes, but we have found that he is watching his own reflection in our eyes.

At about 12 months Charlie became obsessed with doors. Any door. You name it - even the doors on the soda coolers at the grocery stores. I can’t count how many times store clerks have unbraided me for letting him open and close the doors, or tell me how he would be injured by the doors, but the cost of stopping his door obsession was to endure a half hour of screaming. And this child can scream. Ear piercing shrieks. It goes on and on. He can scream for over 40 minutes without coming up for air. I know this because the ride from the nearest grocery store is 40 minutes away and he has screamed every single moment of that ride home when something has set him off.

It seemed to sooth him to open and close doors. He especially likes automatic doors. Once he became tall enough to trigger the electronic eye he was captivated by moving into range, triggering the door, then stepping to the side to watch the door slide back into it’s place. Again and again he would repeat this. We are talking hours here – if he was allowed to continue without us stopping him. And each time we would stop him he would fight us with screaming. We have since learned the power of distraction. At one point we learned that when we tapped him on the shoulder and called “Goose” he would leave the doors and play Duck, Duck, Goose with us. Thanks Heavens for Duck, Duck, Goose.

Clothing was another issue for Charlie. Charlie went through a year, I like to call it his naked year, when he would not keep clothes on. It was actually closer to two years. It was terrible trying to keep him dressed. He would run outside naked all the time in the summer and was so quiet about it that we would not notice until we would see him streaking by the windows. Neighbors would call to tell us that Charlie was streaking again. He was between two and three years old at that point.

Until he was six, he would not get into a kiddie pool or splash in a puddle without wanting to take off all of his clothes. Now that he is getting bigger, he has learned to wear a special swim suit which is snug and goes over him from shoulders to crotch. It has inset panels of foam for flotation, but it seems to fill a sensory need in him. This summer he wore that suit pretty much full time. Getting it off of him was a nightmare.

What is cute for a two year old is embarrassing for a five year old. Many times after he uses the toilet he forgets to put his pants back on. He seems to not know that it is not appropriate to not wear them when he is outside or just playing in the house.

Charlie is the latest Houdini. When we moved here we were thrilled to have a large yard, but it is on a rural highway. We moved in July and it took until the following April to have a chain link fence installed. The first summer was very hard having to be on patrol constantly to avoid Charlie just walking away. So, we now have a fenced-in yard with childproof self-locking gates. He figured them out pretty quickly. Adults come to our house and we have to show them repeatedly how to operate them, but no one had to explain it to Charlie. We have padlocks on the gates as well now. We have deadbolts on all of the outside doors. We NEVER leave car keys where he can find them. Once I found my keys dangling from the ignition. That was the end of leaving keys on a high shelf. They must be out of sight and inaccessible. We have a garage with a garage door opener installed on the wall. That opener is hidden in a wooden box with a lock on it. We live under lock and key. Still, Charlie has been brought home three times by neighbors who have found him when we were not aware he had gotten out. Each time we have had to do more to tighten security as he has become more ingenious in his attempts to get out. I am not sure what we will do when he learns to climb the fence.

He can climb higher than a monkey and runs faster than greased-lightning. He loves to play outside; his Dad built a HUGE swing set. It is all wooden and just immense. But it only has swings and a slide. That is all he needs and wants. We would like to add a tire swing, but can’t afford it right now, it would mean building on to the swing set.

In the winter, which is really long and cold here in PA, he is stuck inside and our home becomes the playground. March, 2004, he tried to ride his big wheel down the stairs. OUCH! He still has no fear of danger and that causes a lot of bumps and bruises. We have to check him every night in the bath for injuries. He has so little sensitivity to pain that we have found injuries that another kid would have come crying to us about, but Charlie just ignores it. We have heated the attached garage and in the winter we have riding toys out there for the kids to burn off energy. The cars sit outside in the snow. But you can't box in that energy. We do allow bikes in the house itself, but only small bikes. Charlie likes to ride his cozy coupe and that is just too big to have inside.

Charlie can operate any TV, VCR, DVD player or video game that is in existence. But he can’t understand a computer mouse. He loves books, but can’t stand to listen to stories, except for Goodnight Moon and Brown Bear, Brown Bear, What do you See? He loves to count bananas and apples, but won’t eat them. It is a mystery why he is the way he is.

Charlie does not have a good idea of who the people in his family are. He has just recently become able to call me Mom and his father, Dad, but it is not said in the same manner as other kids would say it. It is a learned response and is said in exactly the same tone as it was taught to him. When he truly needs someone due to an injury or other deep need, he has no word for it. He just moans. He knows some of his other sibling’s names, but not all of them. He does not know his aunts, uncles or grandparents. When they visit he does not seem to recognize them from previous visits.

He does know his teachers. He knows his bus driver. He sure knows Spiderman. It is a mystery to me why he has no innate knowledge that I am mommy. I thought that was a fundamental thing that all kids know. I was wrong. Life with Charlie reminds me of the country song that goes, “I Love This Crazy, Tragic, Sometimes Almost Magic, Awful, Beautiful Life”

Chapter 3 - Autism

2006-11-09T15:08:00.001-08:00

Autism is a developmental disorder that affects more boys than girls. You have already heard my bit about how I call Charlie my egg roll, but here is my bit about how autism is like ordering Chinese food – two from column A, three from B and one from C, you will see what I mean in a minute. I need to throw into this story what forms the diagnosis for autism, but the reading of it is dry. For those already familiar with the criteria that delineates autism, you can all have my express permission to skip this part. This is for the person who is new to autism.

The actual diagnostic criterion for autism is as follows from the Diagnostic and Statistical Manual of Mental Disorders

(A) qualitative impairment in social interaction, as manifested by at least two of the following:

1. marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction

2. failure to develop peer relationships appropriate to developmental level

3. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people, (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)

4. lack of social or emotional reciprocity ( note: in the description, it gives the following as examples: not actively participating in simple social play or games, preferring solitary activities, or involving others in activities only as tools or "mechanical" aids )

(B) qualitative impairments in communication as manifested by at least one of the following:

1. delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)

2. in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others

3. stereotyped and repetitive use of language or idiosyncratic language

4. lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level

(C) restricted repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least two of the following:

1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus

2. apparently inflexible adherence to specific, nonfunctional routines or rituals

3. stereotyped and repetitive motor mannerisms (e.g hand or finger flapping or twisting, or complex whole-body movements)
4. persistent preoccupation with parts of objects

Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years:

(A) social interaction
(B) language as used in social communication
(C) symbolic or imaginative play

(III) The disturbance is not better accounted for by Rett's Disorder or Childhood Disintegrative Disorder

So, as you can see, if you actually read all of that, is that the diagnosis of autism is made by finding six (or more) items in that list, but they can vary from mild to severe in any area and be so mixed and matched that when someone asks, “What is a child who has autism like?” there could be a hundred different answers. Or maybe a million. Each child with autism is so different. Researchers say that autism is a spectrum, that your child is somewhere on that spectrum and he or she will be completely different than any other child with autism. That just makes it harder to know exactly what to do to help your child. You have to learn what your child is like and what his needs are first and then determine what to do to bring that child to his potential. Now do all of that while the child is unable to tell you what is reaching him and what isn't. You must be very tuned into your child.

And don’t let anyone limit your child's potential, because these kids are SMART. It used to be believed that kids with autism were mentally retarded. Mental retardation used to be part of the diagnostic criteria. It no longer is. Many kids with autism are very intelligent. But in this world a person is judged to a large extent by what comes out of their mouth. My mother often said, “Better to be quiet and be thought a fool, then to open your mouth and remove all doubt.” Well, some of these kids are quiet and if, at some point they are able to become verbal, their speech is usually of a strange stilted variety (probably from years of speech therapy), but this does not reflect a lack of intellect. And mores the pity because these kids are locked inside themselves and have thoughts and feelings that they cannot express. Sure they scream. I would too.

The diagnostic criterion has haunted me. I was able to delude myself into thinking that Charlie would grow out of whatever was making him non-verbal and felt that if he gained language he would lose that (B) (1) criteria and then not be autistic anymore. Unfortunately when he did learn to speak his speech was typical of (B)(2) criteria, so here we are, still mired in autism. I can't kid myself. Charlie hits each of the criteria to differing degrees, but each category is well represented from what we can see.

There are differing forms of autism as well; Charlie has plain old regular autism. But some kids have Aspergers. Some kids have PDD. This is not a book written by a doctor about all of the facets of autism, I have to talk about what I know, and I know Charlie – so I am going to go back to talking about Charlie.

Chapter 4 - Getting The News

2006-11-09T15:07:00.002-08:00

When Charlie was 15 months old, I called our pediatrician and asked about Charlie’s inability to speak. I was told to wait and bring him in for his 18-month check-up and they would see how he was doing then. Our pediatrician performed the CHAT^¹test on Charlie and then advised us that we should look into the Early Intervention program for Charlie. We were still living in Erie at the time.

The doctor advised us that it could be a number of things, including the fact that he had so many siblings to talk for him, and not to get very upset. He told us that so many kids were being diagnosed as autistic that a person would have to be careful when going past our local center for autism diagnosis, The Gertrude Barber Center, if they walk too slowly and they would pull you in. It was said jokingly, but now I realize that it shows the misconceptions regarding autism in general. Even the doctors don’t know much about it. At this point I was thinking that autism was synonymous with mental retardation. And I knew my child was not mentally retarded, so therefore, how could he be autistic? Also, it didn't help that in our town The Gertrude Barber Center was known as the place where people who were mentally retarded lived and worked in sheltered workshops. Huge stigma right from the start.

He also mentioned that the Early Intervention services were free, which was a huge thing for us, I was staying home with the kids and my husband was finishing up his physics and teaching degrees and working full-time as a personal care attendant for a young man with spina bifida. Money was tight to say the least. Our income was under $15,000 at the time.

Two Early Intervention specialists evaluated Charlie. One of those ladies had two children who were autistic. Secretly, I felt that this made her suspect. She might be one of "those" people who see autism everywhere. She told me that the reason she was working in Early Intervention was because of her own children and her need to help other kids with autism. I was very nervous about this whole thing.

Both ladies felt right off the bat that he was probably autistic, but wanted to come back and do more testing. They came back in a week and did a Denver Developmental Test, which showed Charlie’s developmental age at about 2-6 months. We were floored. We knew that he could understand us. How could he test out so low? We could see intelligence and spark in him. We refused to believe that he was autistic.

He didn’t do any of the “autistic things” that we had heard were hallmarks of autism. We had both seen Rainman, so we felt we knew about autism. He didn’t spin – well he did twirl his socks - one in each hand and would keep them going for 20 minutes or more at a time, but he didn’t spin himself in circles. Also, by the time that he was given the test he had almost completely stopped this behavior. He didn’t rock back and forth, well he did bounce a lot on the bed, and the couch, and everything that he could bounce upon, but then so did Jon. He didn’t hand flap, but he did look out of the side of his eye a lot. He didn't bang his head on the floor or inflict harm upon himself. They pointed out more things that he did that we had never noticed, perimeter walking, lack of social eye contact, lack of play skills, major fascination with doors, but we were too deeply in denial at this time.

We have learned since then that it is very common for parents to be in denial. We have also learned that because autism has so many shades and facets that a child can fall anywhere on that spectrum and be completely individual enmeshed in his own autism.

We took Charlie to Pittsburgh Childrens' Hospital in May of 2002 – really for confirmation that the Early Intervention people were off their rockers. It was a long 5-hour drive and Jon and Charlie were so upset in the car. Charlie was screaming and Jon was asking how long the drive would be. Neither child liked long car drives at all. Jon used to cry so hard when we drove to visit his Grandparents that we stopped going shortly after he was born.

We stayed overnight in a hotel. Jon liked that; Charlie didn’t fall asleep until about 2 am. His routines were in tatters at that point. He spent the night bouncing from bed to bed in the room. We woke up exhausted and our nerves were frayed.

We had planned to visit Chuck’s parents on that two-day trip, having his appointment the following day, but instead we called the clinic first thing in the morning and asked if Charlie could be seen right away. We were thankful that they were able to see Charlie almost immediately. Chuck dropped me off at the clinic with Charlie and took Jon to see his grandparents.

We waited in a colorful room with a TV and lots of toys. Charlie was happy. But after waiting about an hour he was getting tired. He had played with the toys, walked every inch of the room and he wanted to leave. We were greeted by the doctor and taken into a small room. I mentioned to her not to close the door or Charlie would become upset. She turned around, closed the door and put her chair in front of it.

As soon as she closed the door Charlie just went ballistic. Charlie would have perhaps been more willing to stay in the room if the door was left open, but he was afraid of doctors and small rooms, and no amount of cajoling could convince him to play. You can't imagine how angry I was at this lady at this point. Charlie looked into a two-way mirror a few times, but other than that mirror, all he wanted was to get the door open. The doctor sat in her chair in front of the door and watched Charlie go into full meltdown. We tried to go into another room, and Charlie did say a word or two, with prompting from me, but he had pretty much shut down by then.

We left the diagnosis rooms and went back into the waiting area. Chuck had just arrived with Jonathan. At that point Charlie became animated at seeing his dad and brother and even though the doctor saw that, it didn’t change her opinion.

The pediatric psychologist/MD diagnosed him as autistic right there on the spot. She quoted back to me things that I had said, but altered the way that I had said them. She told us that I said, "Charlie has to be taught everything, he can not learn anything independently." I had not said that. What I said was, "Once we show him something he learns and never forgets it."

She said that his behaviors were classically autistic and that with the spark that he did show of intelligence he might be able to attain independent living. Our jaws hit the floor. Independent living??? No way! We knew about independent living from our time on the Center for Independent Living board. That was for people with severe disabilities. We never in our wildest dreams (nightmares) considered that his potential for developmental growth would be that low. Our big question was, if he is autistic, how long before he grows out of it.

We also had trouble with the doctor’s evaluation. By the time we got Charlie home that evening he was feeling warm and getting ill. We felt that the real reason that he not played and interacted as requested by the doctor was due to an oncoming ear infection and the fact that the doctor had set him off by locking him in that little room. I felt that she must have taken things that I said out of context and magnified his problems. It couldn’t be autism; he was just overstressed from the long overnight trip and the ear infection. My husband and I felt that professionals saw autism everywhere because that was what they wanted to see; maybe they were trying to fill up their autism clinics with kids so that they could keep up on the bills. Now we were dealing with a little paranoia.

We took Charlie for more hearing tests, and visual exams. The main reason for the hearing tests was because Charlie was constantly fiddling with his ears and plugging them. Charlie still does this; it is common with kids with autism. Also, you could sneak up on him from behind and call his name with no recognition from him at all. Charlie tested normal in everything. To tell the truth, I had almost hoped that Charlie had a hearing impairment, even a visual impairment, because you can fix that with glasses or hearing aids, but you can't fix autism.

I couldn’t believe that our baby was developmentally disabled and I felt that he would talk when he was good and ready to talk. After all, Einstein didn’t speak until he was 4 (although what he did say at age 4 was astounding^²)! I did not enter Charlie into the Early Intervention program at that time, because I didn’t think that he fit the criteria for autism and didn’t want him to be labeled as such. I didn't want an autism diagnosis to stick to him. I didn't even want to talk about it.

1 The CHecklist for Autism in Toddlers (CHAT) is a screening instrument which identifies children aged 18 months who are at risk for social-communication disorders. http://www.asaoakland.org/chat.htm

2 Apparently when Albert Einstein was 4 and had been non-verbal up to that point, his mother presented him with his new baby sister and asked him if he would like to play with her, he replied, “Where are her wheels?” One would doubt that this child was truly autistic. Still parents are often reassured that if their non-verbal child does not talk, that he might just be the next Einstein.

Chapter 5 - Trying to Figure Out WHY

2006-11-09T15:07:00.001-08:00

What causes autism is the million-dollar question and if I had an answer I would be thrilled. I don’t what causes autism. Most experts say that autism is probably a genetic predisposition along with an environmental insult. I do know that autism has made raising our other kids seem like a breeze. We have a child who is three years younger than Charlie. Rachel started talking at nine months. At 14 months, she was more communicative than Charlie was at nearly five. Not that she could say more words than he could, but she just absorbs language better and spits it right back out. She has the by-play of two way communication that Charlie lacks. It it easy to see how different Charlie is “wired” when we can see Rachel developing normally and compare the developmental differences between a child with autism and one without. Rachel has been so good for Charlie, as she learns he watches and learns from her.

When I ask myself how Charlie became autistic, I have to look at some current theories that we originally considered. Charlie was born in 2000, and at the time that he was originally diagnosed with autism, the immunization/mercury theory was very evident on the Internet. In checking with his pediatrician in Erie, they said that he was never given shots that contained Thimerosal, the preservative that contains mercury. They had the actual stickers from the immunization bottles and those lots were supposedly not preserved with thimerosal. Not to sound like I doubt the doctors, but it is a case of protecting their own posterior. So who knows what was in those shots?

Charlie was given six shots in the hospital within his first 48 hours of birth. Hepatitis B, HIB, Vitamin K, and three shots for circumcision. Did any of those shots would contain mercury? Probably at least the vaccinations. At that time, he was also ill due to his birth problems. So reasonably, we thought maybe it was the mercury.

Chelation is a therapy to remove heavy metals from the body. Actual medical chelation is a dangerous procedure, which can result in liver damage. We were not willing to go that route. We tried natural natural chelation therapy, which consisted of a diet rich in cilantro and antioxidants, and it made no difference. If chelation therapy would have helped I would have been ecstatic. That at least, is an answer and a plausible one. But it made no difference to Charlie. It is possible that with an actual course of chelation therapy that things might have been different, but since the doctor was unable to detect high mercury levels or lead levels (from the house fire listed in an earlier chapter) we just were afraid to risk chelation.

I personally feel that if the shots were to blame then the rates of autism should have taken a nosedive when the Thimerosal was removed from the vaccines. It is still in flu shots, but the amount is pretty small and it is just one shot. The supposition was that when you add up all the shots that a kid gets in their lives and figure out all of the mercury content it adds up to toxicity. But in our case Charlie didn’t have that exposure except for that first day in the hospital.

Mercury is in tuna and other seafoods, but I did not eat any during pregnancy or while nursing. The symptoms of mercury poisoning parallel autism quite a bit. Even though the blood tests that our current pediatrician performed showed no elevation of heavy metals, we were told (via the internet) that mercury levels could be elevated, and without special (expensive) tests that only they could perform by receiving a hair sample, he might test normal and still have mercury poisoning. This just sounded hokey to us. We had already tried chelation therapy, mainly because we felt we HAD to and found no change in Charlie’s level of functioning.

The MMR vaccine is looked at as a causal factor, but we will never know in Charlie’s case. I have 6 children and all have had their vaccines. Four of my kids had vaccines that were LOADED with mercury and they had their MMR’s too, but none of them are autistic. It is truly a puzzle. Rachel had her MMR and has not changed one whit. By the way, after dealing with this fear of shots and having a subsequent baby, it is scary to think about more shots. But fortunately, all has been well. No ill effects.

While looking for another answer to the puzzle, we learned about leaky gut syndrome^¹. We tried dietary therapy, since Charlie was having reflux and other eating problems, mainly bowel problems and vomiting, we thought he might have leaky gut syndrome, we put him on a gluten, casein and soy free diet. Charlie had been highly allergic to dairy as an infant, even diary consumed by me as I was nursing, so he was already 100% dairy-free. We found no changes in him at all. We did put him on Prevacid, which helped the bowel movements firm up and stopped the reflux. Charlie had tongue-tie surgeryat age four and after that, we no longer needed the Prevacid. He was now able to chew and swallow, and his stomach problems disappeared. So his digestive problems were the result of a tongue constriction, not leaky gut.

If neither mercury nor leaky gut syndrome were to blame, maybe it was oxygen deprivation at birth. Charlie had his umbilical cord wrapped tightly around his neck and was having late decelerations for hours during his birth. This is the most likely reason, in my opinion. But again, maybe it is just his genetic soup? Andrew has schizophrenia. How did he get that? Autism and schizophrenia do apparently have some links according to psychiatrists, so maybe it is genetic.

There are some substances, both medicinal and homeopathic, that are supposed to lessen autism behaviors and some people feel that some agents can bring a child out of the fog of autism. We have not tried very many of these, mainly because Charlie hates taking medicines. I briefly tried giving Charlie Omega 3 fatty acid oil which is supposed to make the kids think clearer and learn better, but he was so upset by the taste and texture that I stopped giving it, it was torture to him.

Melatonin is supposed to help sleep cycle normalization, and we have used that for three years, but it is hard to get into him. We hide it in food in the evening. Since age six he needs melatonin less and less, presumably because his school activities are stabilizing his sleep cycle. Basically he is always getting up early, getting worn out at school, and then falling asleep easier and staying asleep. We actually have found that using his natural inclination toward routine helps his sleep cycle more than any medicines could. By getting him up early, not letting him nap and dimming all of the lights at 7:00 pm, he has fallen into a good sleep routine. Some parents give their kids ADHD medicines, antidepressants, some use anti-psychotics. Both the ADHD meds, the anti-psychotics and the antidepressants, such as prozac have some side effects that we are alarmed about. Particularly the anti-psychotics. We have some experience with those side effects with Andy. He takes a handful of pills many times a day and they have caused a lot of problems for him. Unfortunately, they do not really control his psychosis. But that is another story. For us, we are trying not to bring in drugs until he really needs them. Until then, we are just using behavioral management to try to control his behavior.

There are lots of organizations on the Internet that are conducting research, but their methods are suspect. Sometimes they may be affiliated with someone with a medical degree, but I have been holding out for medical university research. My sister, who is a physician and medical researcher, told me when we first started looking at research to look for research results that have been published by accepted medical journals. Look for credentials and don’t believe everything you see on the Internet.

UCLA has done the only research that I am aware of that has shown a therapy that makes an impact on kids with autism and that therapy is the ABA type schooling that Charlie is currently receiving. This research was originally done by Dr. Lovaas^² in California and has had a lasting impact on kids with autism. It is therapy that takes a long time. The kids do not become 'unautistic'. But in Charlie’s case it is helping. It is not a magic bullet, but it’s all we have.

Chapter 6 - The Hard Work of Breaking Through to Charlie

2006-11-09T15:05:00.002-08:00

Charlie is all alone inside himself.

Well, you can only ignore autism so long. Then it grabs you and demands your attention. After our move to Potter County, PA in June of 2005, I thought that I could cure Charlie and make him “unautistic” by involving him with a playgroup which is run by the local hospital, but he stayed on the fringes of the group and only wanted to play with the balls or slide down the sliding board. He had no interest in circle time with the other kids. Occasionally a song would capture his attention, but the stories or crafts were just not in his world. I could have held him down and forced him to “be there” but he would scream. I played ball with him in a corner while the other ten kids played in the group.

There were kids there who were a full year younger than Charlie and were so verbal that I couldn’t believe it. I chalked it up to them being mostly girls. After all, girls mature faster than boys. A woman who was attending the playgroup with a little boy told me that she noticed the day before that I was having trouble with Charlie (to put it mildly ~ He had been screaming and running away the whole session) and she had referred Charlie to Early Intervention. She asked if I would consider Early Intervention for Charlie. I was so upset and scared that someone had felt that Charlie was out of control. I didn't know who she was, but I thought maybe it was Childrens' Services. The play group leader told me that she was a preschool teacher and the little boy was one of her students. She worked as a special education teacher for the district's Intermediate Unit, which is the head of all of the school districts. I was told she was excellent. Actually everyone that I ever asked about her told me she was excellent. You won't believe this, but now, I tell everyone that she is excellent too. Her name is Ginette.

I took Charlie into the nearby locker room and sobbed in a rest room stall until my shirt collar was soaked. Then I went to a phone in the locker room and called the head of the special education department at the intermediate unit for our area and told them what I thought about her diagnosis of Charlie and that my kid did not have autism and I didn't like being told that he did. He was just a little behind in the speech department. I told them that I thought her approach was heavy-handed, but I was also scared that this stranger could so easily notice my child was different.

It took a nearly year before I was able to make myself take him back to the play group. But, on the good side, her comments did spur me to get Charlie into Early Intervention at that point. That preschool teacher later became Charlie’s first school teacher. Now, looking back on it, I see her being in that class on that day as a gift to us from God. She made a huge difference in Charlie's education. She is an excellent teacher, very kind and loving, but I was so unable to see clearly right then.

One other thing that we did shortly after moving to Potter County was to start buying Baby Bumblebee Videos. I found them on the Internet. These are speech therapy tapes that are set to classical music. I think that they have taught Charlie most of his actual vocabulary. He watched them almost ever day and we bought him new videos when we could. They are classified into vocabulary words (nouns), action words (verbs) and then other tapes have colors or opposites or even words that directly relate to play. They are not photographed with flashes from scene to scene; it is a quiet type of video with mostly white backgrounds that simply reinforces the words that are presented. We started off with the vocabulary builder and have bought most of the series. There are still several that we do not own, but in time we will probably get them all. We tell family to get Charlie Baby Bumblebee movies for his birthday and Christmas. I think most of the words that he has acquired have come from these tapes. I also think that these tapes taught him to read, because each word is accompanied by it's written form.

I finally started speech and language at home with specialists from the Early Intervention program when Charlie was two and a half. Play therapy was his favorite time of day. We would have visits from two therapists on alternating days. They would stay for about an hour. Each of the therapists had a big bag of toys, books, puzzles and other fun toys. Charlie warmed up to them quickly and made friends with the therapists.

Every time that Charlie would say a sound that resembled a word, they would write it in their notebooks. I also kept a list of sounds and words on the refrigerator. This was so that we knew what we could expect Charlie to be able to say to get a particular item. I was asked what Charlie’s favorite things were and those things became his reinforcers. It is important to use reinforcers to get the desired response from the child. For example, he loves Swedish fish, painting, and playing with toys that spin and turn. Those became primary reinforcers. Also, we would use gross motor play, picking him up and twirling him around, tickling him, rolling on the floor with him, to reward him for using words.

The use of reinforcers has not altered since we first started working with Early Intervention to teach Charlie to talk when he was 2. It may sound pavlovian, but it worked. Everyone works for what they want. At work you get a paycheck. If you didn’t get that paycheck you probably wouldn’t work so hard. Charlie’s paychecks just come in a different form.

By the time he was three there was still no real language. He had only a couple of vowel sounds. I used to say that he was silent as the grave. Early Intervention ends at three years old with a transition to the local intermediate unit of the school system. In our case, we decided not to go that route. I think that needs some explanation. I was actually afraid that if Charlie - who was a natural mimic, was in a school with a lot of kids with autism, that he would mimic them and become like them. In effect, I was afraid that he would become autistic by association.

1 Gluten intolerance ("Leaky Gut Syndrome"/Casein intolerance causing intestinal permeability and allowing improperly digested peptides to enter the bloodstream and cross the blood-brain barrier which may mimic neurotransmitters and result in the scrambling of sensory input.

http://www.autism-resources.com/autismfaq-theo.html

2 http://www.lovaas.com/resources/

Chapter 7 - What Comes After Early Intervention?

2006-11-09T15:05:00.001-08:00

It is hard to admit this, but my own misconceptions and fears about autism held Charlie back. At the time that I was looking into alternatives for transition, I had never, ever met another child with autism. The movie RainMan was about the only frame of reference for autism and there were not too many books on autism. We had to dig deep to find resources that would help me understand what Charlie was going through. The first book that I read was Let Me Hear Your Voice, written by Catherine Maurice, which describes the story of a family with two children with autism. The mother worked to provide an in-home program for her children using ABA principals. These people used their own funds to pay therapists to come into the home, and for us, that was just not possible. Due to our rural area there just were not people available to come into the house, even if we were able to pay them; which was not possible. I had to go another route. But it did give me information about the use of ABA training and it’s effectiveness in treating autism. I began using some of the techniques at home on my own. But I was looking for more.

The second book that I read was Teaching Developmentally Disabled Children: The Me Book, published in 1981 by Ivar Lovaas. This book describes the ABA therapy that was developed by Lovaas at UCLA and has been successfully helping kids with autism to learn to communicate. I felt that one of the most important parts of the book was the portion that mentioned that when the child was removed from an ABA learning environment, they could regress. THis scared me. I knew at that point that I didn’t want to lose what we had gained with Early Intervention. Charlie had some sounds. He could say eee for eat. He could say other sounds that would indicate his other wants. Still no words, but some sounds.

I talked to Charlie’s pediatrician and got a prescription for speech and language therapy along with occupational therapy (play therapy). Charlie has a wonderful pediatrician here in Potter County. She has contacts at Pittsburgh Children's Hospital and is very up on current autism research. I got Charlie on SSI (although I still secretly felt that he was not autistic) and we received a state Medicaid card that comes with SSI. This is essential. I did not know that most insurances, including Highmark Blue Cross and Blue Shield, which is our insurer, will not pay for ANYTHING if the diagnosis is autism. Zip, none, nada. So the state medical card paid for the occupational and speech therapy which was performed at the hospital which runs the play group. This was a long drive for us, especially with me being very heavily pregnant and we made that drive four times a week.

Our new Speech Pathologist was named John and he bore a striking resemblance to Dr. Johnny Fever from the TV show WKRP in Cincinnati, (coincidentally even sharing the same first name!). He was the Speech pathologist who had evaluated Charlie for entry into Early Intervention the year prior to this. I have to say that I just love this doctor! He was so skilled and did so much for Charlie.

When Charlie refused to go into the playroom he played with Charlie in his office with the door open. I was always with Charlie in the room. We played on the floor and when Charlie would not play with the therapist, the speech pathologist and I played with the toys and eventually Charlie would join us because he could see that we were having such fun. Oh yes, it was fun being so pregnant and sitting on the floor playing with toys while my legs fell asleep. But Charlie started to come closer to see what we were doing and pretty soon he was playing with us. We spent about two months in that corner of the office. Eventually we transitioned to the toy room next door and tried to get Charlie to sit at a table and play with us face to face. To really play WITH us and not just near us.

Charlie finally began playing on the table while sitting at a chair. This was something that he had never been able to do before. Actually sit still at a table and pay attention. That is where the actual work on eye contact began. John would hold a wind-up toy up to his face near his eyes, drawing Charlie’s attention upward. When he caught Charlie’s eyes he would say, “Make it go?” and if Charlie made any sort of sound he would be instantly rewarded by the toy dancing or zooming on the table. The most important thing was the eye contact and the next important thing was Charlie making a sound to get a reward. That was the pattern that we followed for months and months on end. I was astounded at the amount of cool wind-up toys that John had for the kids to play with. Apparently he had been doing this for a long time and knew what worked. John was not only a speech pathologist, but a behavior control specialist, as well. That was critical. Until this point no one had tried to change Charlie's behavior. They tried to make him talk, but John wanted him to listen as well.

John never backed down and he never gave into one of Charlie's many temper tantrums. He would tell me not to even look at Charlie when he threw himself on the ground and cried. We would both just look away and be silent until Charlie was done with his tantrum. After he calmed himself down he would get a reward for either getting back in the chair or simply for quieting. It was very hard to just ignore the behavior and many times I was biting back tears or was mad at John for "making" Charlie cry.

Bubbles were Charlie's favorite wonderful reward. Painting was another of his favorite things to do at therapy. I never used bubbles or painting at home because I wanted those things to be special for speech therapy. We spent about seven months in therapy and things were going really well and then I got a call from the hospital saying that they were canceling our Friday session. We had missed our Wednesday session due to illness and it was at that session that John had planned to tell me that he was to North Carolina to take another job. I was angry and frustrated. We had come so far! This hospital only had the one pathologist, so we had to wait until the next one came to fill the gap.

Our doctor’s replacement was a young woman that came to our initial consultation in a crop top with her belly showing. I felt that she was dressed very unprofessionally. She invited me into the playroom and Charlie immediately went under the table. While he sat under the table, she began to tell me about her work experience. To prove to me that she knew how to deal with kids she told me about her babysitting and summer camp experiences. Come on. This is my kid’s LIFE we are dealing with here! I knew that his little developmental clock was ticking and every day he was getting more and more behind kids of his age level.

I was getting upset. We had gained a lot of ground with the former Pathologist's methods of reinforcing good behaviors and never backing off on negative behaviors. I saw her compromising all of his hard work the first session. When Charlie had reverted to hiding under the table and she attempted to draw him out. She began blowing bubbles, Charlie’s favorite activity. She had his attention. She told Charlie that he had to come out from under the table to get the bubbles. Then she waited. She told Charlie that he would not get the bubbles unless he came up to the table. After about a minute of waiting she got under the table with him in direct contrast to her previous statement! She reversed herself three times in that session in that same manner. I told her my thoughts about it. I felt that she was undermining the previous six months of work by being non-consistent.

If you tell a child that he has to perform an action to receive a reward, then you have to stick with that. Otherwise, they will never listen to you again. After her evaluation of Charlie, she told me that Charlie would not benefit from her help and that he needed to be in the developmental preschool. I think that she was right in that she was not the right teacher for him, but I was frustrated to have no alternative but to be forced to send Charlie to a school for kids with disabilities. Remember, at this point I was feeling that he still was misdiagnosed and that he would talk when he was ready. But I knew in my heart that I could not just stop the speech therapy. All of my options were gone and I had no choice, but it has turned out to be the best thing for him. One thing you learn quickly when you have a child with a disability is not to get too attached to the therapists, because the turnover rate is just astronomical. We have lost more great therapists and teachers than I can count. But there are a lot of outstanding people out there to fill the void. We had to move in a new direction and I wasn't happy about it.

Chapter 8 - Starting Preschool

2006-11-09T15:04:00.001-08:00

I took Charlie to Ginette's developmental preschool one day just to check it out. My main reasoning was that I wanted a reason NOT to send him. I wanted to see that it would not suit him. Boy was I wrong. He loved it! I was floored by his reaction to it. I had never seen him so animated before. The toys, the kids, the colors! He was in heaven and I felt like a fool for having not checked it out prior to this. He was just delighted to be there and actually threw a fit when we left. I think we were at the point where Charlie’s severe dependence upon me was waning, he had stopped breastfeeding seven months earlier (thankfully!) and I was able to leave him at home with his dad for short trips to the store without him throwing a fit. The timing was right and he was just enthralled with the class and the teachers.

I want to give sort of a visual of the classroom, it is so impressive. It is a large room that is housed in a church. The church itself is a huge place with an entry way that reminds me of the entryway to the Warner Theater in Erie, PA (see photo to the right of the theater). It had a large double staircase that Charlie really liked.

The room was filled with really cool toys on shelves as you walk in the door. Toys like car garages, airplanes, spinning toys and other large toys that can keep a child enthralled for hours. There are several large areas for kitchen play, dress up, and play with dolls (such as putting them to bed and rocking them) and a water play area. There is a library area, more shelves with toys, a large rocking chair to sit in and tell stories to a little one quietly and a circle time area with a colorful board filled with activities that the kids use during circle time. There are tables for snacks and for table toy play, and a wooden cubbie rack that forms part of a little play area with dinosaurs and cars to pretend play with on a carpet.

Not all was roses though; Charlie still communicated largely by screaming. He would run out of the classroom and down the halls. He would balk at using the bathroom because the light and fan operated together and he hated the fan's noise. His teachers, Miss Ginette, Miss Alison and Miss Rebecca were patient with him. The first thing that made a difference for Charlie was the use of a picture schedule to establish a routine in the classroom. He would be handed a PECS (Picture Exchange Communication System) card that would indicate what he was to do. The first card of the day would be to hang up his book bag, then he would get a card that had a picture of table toys and he knew to take a toy from a shelf and play at a table with his teacher. He got the idea of how to use that picture schedule within days. Charlie was in good hands with teachers who were taking the methods that worked in speech therapy and applying them further into social interaction with other children. Although he was still almost 100% non-verbal, he was communicating a little bit. We considered sign language, but I was pretty determined that I didn't want to go that route at this point.

Charlie’s preschool was three half-days a week, using a program dedicated to the principals of applied behavioral analysis. The school was located 18 miles away from our hometown. I was afraid to send him on a school van, I had never let anyone else drive him anywhere, mainly because of his explosive temper in the car and now he would be away from me for hours at a time. It turned out he loved the van and the driver, Sharon. When Charlie would have a fit in the car, she would pull over until he was done and then get back underway. We ended up copying this in our travels. It is amazing how well it worked. He also stopped fighting to stay out of the child restraint car seat. I was learning that if I don’t give Charlie chances to do things and if I just assume that he is incapable, I am limiting his potential. I am not sure why, but I am glad that it is easier to get from point A to point B with him. I don’t care why, I just thank God that he isn’t screaming all the time.

He was testing as 18-20 months of age on the Denver Developmental test after his first nine months of school. Although that was far below his chronological age of four and a half, it showed steady progress from the 9 month level that he scored with John's last test that he administered before leaving for North Carolina. All progress is good.

Charlie was diagnosed with secondary mental retardation in June of 2004. This means that his mental development is impaired by his inability to communicate. Simply stated, he is slowed by his inability to communicate and learn, and so he lags behind. With each passing year he is getting further and further behind his peers. Mental retardation from birth is different that this secondary type. Charlie was not able to answer the questions which would have allowed his intelligence to be evaluated by current testing methods. His IQ rating was 55, although really, the test is test invalid due to his autism. If a person can’t answer the questions, then a negative response does not necessarily indicate that the person does not know the answer, only that they can not form an answer. Basically it is a guess. I know that Charlie is intelligent. I know it in my heart and I am hoping that one day he may have more ability to speak and answer questions, and that this particular diagnosis be found to be invalid. But at this point in his education, it helped him to get services that would otherwise be unavailable to him. It was just basically working within the system and the system stinks, at this point. Services such as respite and child care camps should be available to kids with autism who are not mentally retarded. This is just another example of rules that were written 20 years ago not being revised and updated to reflect what is current in the mental health world.

Day by day we could see improvement in Charlie. Interaction with other kids is as valuable as gold, but still, up until May of 2004, I felt that he was not really autistic. Not until he started speaking did I really believe that he had autism (or more specifically that autism had him). And how he first started talking -- that is quite a story.

Chapter 9 - Charlie Speaks ~ Finally!

2006-11-09T15:03:00.000-08:00

One day in May of 2004, while he was still in his first year of preschool, I was driving home from the grocery store with Charlie and Rachel. Charlie was screaming in the car because we had not stopped at K-Mart and bought a toy for him. His screaming had set Rachel off and she was crying too. The road from Wellsville, NY to our home is one that you can't really pull off of. There is no shoulder, so I was just trying to drive as best I could for home and ignore the outburst. I knew that nothing was wrong with him other than the fact that he was ticked off that we didn't get him a toy.

Our home is so remote that any trip to the store takes at least 45 minutes each way. Charlie had been screaming for what seemed like hours. We were still about 25 minutes from home. Not even half way home yet. I felt like my head was going to explode from the sheer volume of the shrieking and I prayed out loud, “Please God tell me what to do to help Charlie, because if he doesn’t stop I’m gonna to kill him.” I was only half joking.

Later that evening before bedtime, I was giving Jon and Charlie a bath and Jon was sticking out his tongue at me. This kid’s tongue is so long and pointed that I was laughing about it. Charlie was looking, but would not stick out his tongue. That night, after his bath, we were playing on my bed, which has an oval shaped mirror in the headboard. When we bought it we were really concerned about that headboard. Charlie and glass do not mix well, but here he was, naked, with his face right up to the mirror with Jonathan and they were both looking at Jon as he watched himself stick out his tongue at the mirror. I happened to catch a glimpse of Charlie trying to lift his tongue and somehow saw from the side that he was tongue-tied. Now, I knew about tongue tie, because I had been a dentist assistant and I had seen this before on other kids.

Tongue Tied.

I got up on the bed and got Charlie flipped over, so that he was laying on his back and tickled him until he started laughing out loud. When I gave a good look in Charlie's mouth, I could see that his tongue was attached from the bottom on his mouth right to the tip of his tongue and it was held fast to the bottom of his mouth.

When he tried to stick out his tongue it was not pointed like Jon's was, it formed a heart shape where the tip was held back by the muscular attachment called the frenulum. I got the kids dressed and then booted up my computer and did some quick looking for tongue tie. I found some photos and just sat there looking at the computer dumbfounded. I called Chuck in and told him what I had seen. I made him lift his tongue so that I could see his frenulum. I made everyone in the house stick out their tongues so that I could compare and sure enough, our child was tongue-tied. Several doctors, two dentists, many speech professionals (including our two speech pathologists) had looked in that mouth of his and no one had seen his tongue-tie – and I had never seen it either – not until it was made clear to me – an answer to prayer.

There are a lot of reasons that kids don't talk. One of those reasons is called Oral Apraxia. Oral Apraxia is defined as: a disorder where the child, who typically is a "late talker" is unable to coordinate and/or initiate movement of their jaw, lips and tongue (articulators) on command. An Oral Motor Disorder, which could be a different oral motor problem than apraxia (could be from weakness for example) is the second type, in which the child is unable to coordinate and/or initiate movement of normal eating movements (vegetative activities.)

Suddenly it all made sense to us. Charlie, throughout his life had eating difficulties that were in large part due to this tongue constriction. He could not take bites of pizza, but scraped the toppings off with his top teeth and left the bread. When he had a cold he could not even lick his lips. He would get big chap marks because he would use his lower lip to wet his upper lip and then his upper lip to wet his lower lip. He had huge red marks above and below each lip whenever he had a cold, all because he could not stick out his tongue. We always wondered why he had those marks. We had never seen them on any other kid. He could not lick an ice cream cone. He could not make funny faces. He simply could not move his tongue at all. He would gag and choke often because he could not chew and swallow properly. He had horrible gas, probably from badly chewed food and excessive swallowed air. Click! Another piece of the puzzle snapped into place.

We went to our Pediatrician with a day or two. She said, “How did we miss that?” She agreed that he needed the tongue-tie severed and she made the referral to an Ear, Nose and Throat doctor in Erie, PA, Dr. Kirk Steehler. He said that most tongue ties are caught when the child is in infant and he had not seen one that severe on a child as old as Charlie. We made an appointment for the surgery and brought him back to Erie two weeks later. It was be an outpatient procedure. The day before the surgery we arrived in Erie and stayed overnight. Chuck's parents met us in Erie, which is the half-way point from their house to ours. We had dinner the night before, which was awful for me. Charlie acted up at the restaurant and I took him and Rachel back to the motel to wait for the rest of the clan to get back.

We got Charlie to the surgery center very early in the morning. It took a long time for them to call him, then they took him back and wanted him to dress in a gown. He resisted. It was a long, hard morning. Finally the nurse sedated him with an oral sedative. I suggested to them that they use an oral syringe rather than a cup to dose him. He became sleepy and giggled to me. The nurse and one assistant took him down the hall on a gurney and I went to wait with Rachel, Jon and Chuck in the hospital waiting room.

It seemed to take forever, finally they called me back to the recovery area. Chuck stayed with Jon and Rachel. Charlie was fighting coming out of the anesthesia. He was scared of an IV tube in his arm, which was wrapped in gauze and he was trying to pull at it. They were forced to put more medicine into his IV line to calm him. He went back to sleep. As he came out of it again, I rocked him and carried him, he fought coming out again and they gave him another shot. Each shot put him out for about 45 minutes.

Rachel, who was still very little needed to be nursed, so Chuck and I switched places (much to my relief) and he held and walked Charlie in the recovery room, trying to wake him up slowly and calmly. It took over three more hours for him to be able to leave the hospital. We went back to the motel, gathered our things, said our goodbyes to Chuck's parents and drove straight home. Although it took three hours to get home, Charlie was fine in the car the whole time, which was strange to us. The other kids were a different story. They cried and fussed. We had to stop a couple of times on the side of the road to calm them. I got into the back seat, which is very hard for me, I get so car sick, and actually had to nurse Rachel while we were driving and while she was strapped into her car seat. No, don't try to picture it. It was not a pretty picture. I cringed when ever we passed another car. I was never so glad to get to our house.

On his first day home from the hospital Charlie grabbed a slice of pizza and bit into it. I couldn’t believe it! I called to Chuck to look. We were both drop-jawed, watching our son eat and chew food properly for the first time. Prior to this he would eat pizza by scraping the toppings off the pizza with his top teeth. We thought he hated crust. Nope. He just couldn't bite and chew. But now he could. Wow. What a change. The doctors had told us that he might have to be retrained to chew and eat, but apparently he had figured it out on his own. He did bite his own tongue a lot that first year after the surgery.

You know, Charlie is the one kid who can stick out his tongue at me and it just thrills me.

Charlie was soon making consonant sounds, mmmmm, nnnnnn and later words, but the speech was only needs-based, “movie” or “open”, to get us to do what he wanted. Words that John, the speech pathologist had tried to teach him were now in his vocabulary. It was not normal communication and even a year later; it was still pretty much the same needs-based language. This indicated to us that it was his brain wiring that was damaged. Not his speech organs or his hearing. He had heard and learned the words, but he didn't understand language at all.

However, the impact of the tongue-tie, especially as severe as it was, cannot be over-estimated. When a child cannot make a sound, cannot move their tongue, they will eventually stop trying to do so. I feel that Charlie’s tongue-tie constituted oral apraxia and that, in combination with the autism, may have made his autism appear to be of a different or worse nature than it really was. We may never know if Charlie actually has Aspergers Syndrome, because the defining element of Aspergers is speech before age two. Who knows if Charlie would have had speech if he had not been tongue-tied. We will just have to wait and see how far he is able to go with his speech.

Day by day he is coming along. He is opening up and noticing things that were just not there for him before. He began to answer simple questions in the summer of 2006. Most of those responses to questions such as “How are you?” are still rote responses, but sometimes he does come up with spontaneous communication. An example of this would be when he would me by the hand at night and say, “Go nite nite now?”. This is a huge jump for him to have an internal feeling and be able to generate a verbal request. It fills my heart with hope that as time goes on the learning curve will continue and he will become less and less different from other kids. But as of age five he was still only able to tell his name about 10 percent of the time.

Charlie uses phrases from movies to express himself. This is called echolalia, for example, “Good Soup, Mum”, which is a line from Shrek II, indicated that he liked his food. “I am going to squash you like a bug”, from Spiderman indicates that he is just plain ticked off. Not only does he use the exact same words, but the same inflection and the actual voice is copied. It is uncanny. He could do voice-overs.

At 5 years of age he could not express much more than basic needs. He could string 5 words together and sing beautifully, but much of Charlie still remained locked inside of his own head and we could not communicate with him much. He never came running to me with a toy saying, “Hey Mommy look at this cool toy!” I hoped that his speech would be that of a regular kid after the tongue tie surgery, but instead, the character of his speech convinced me that he truly is autistic in a way that his silence never could.

Chapter 10 - What's Next? Kindergarten? More Preschool? Life Skills?

2006-11-09T15:02:00.003-08:00

Charlie's first teacher, Miss Ginette, was a Godsend with a capital G. She is patient, loving, kind and most of all she is consistent in her training of Charlie. I was, at first, determined not to like the school because I was afraid to label Charlie as autistic. A lot of people, including my sister Peggy, who was working in a school, told me that a label would stick to him his whole life. I should be careful not to jump to label him without serious consideration. Most people that I talked to about Charlie told me that they didn't think he was autistic, and I clung to that. But, the logical part of my mind told me that if he was autistic or even just learning delayed, and I did nothing I would miss that teachable window that is so important in kids. I was filled with fear of reproaching myself if I did nothing, and I was convinced that this school could do more for Charlie than his private speech therapy had done.
So, Charlie continued in preschool. This preschool used ABA type therapy, but in November of Charlie's first year, the school staff began training in the Verbal Behavior Program and that program went on line in January with all the kids participating. It was a big change for the kids and staff, but I believe that it really clicked with Charlie.

Unfortunately, Miss Ginette left the classroom for several months during the tail end of Charlie's first year of preschool and a different teacher took over. He lapsed on his potty training, but he recovered his training fairly quickly. Every morning Charlie would sing a little song, “I’m gonna see Miss Ginette he would say, even though she wasn't there. He missed her so much. Once in a while she would come back into the class, because her new job was in service coordination and she would meet with parents of kids from the preschool, Charlie seemed to enjoy the visits, but we found that he was sad for days afterward and reluctant to go back to school. We played that down, not wanting to reinforce his reluctance.

We were all thrilled when Miss Ginette returned to the classroom several months later. The change in Charlie, when Ginette was back, was profound. He seemed like all was right in his world again.

Pretty soon the time came for Charlie's transition meeting which signaled the beginning of his Kindergarten eligible year. When a child is five in Pennsylvania, they are old enough to be in Kindergarten. They don't have to attend until they are six and in PA, kindergarten is non-compulsory, but standard procedure at the Intermediate Unit is that a five year old child would be transitioned out of the developmental preschool and into kindergarten, usually a special education class.

We had Charlie's IEP meeting in February, all of his teachers, the administrators, service coordinator and parents came together to decide the path that he would take in the fall. There were several options available to us.

A life skills class;
A mainstream preschool run by our local district located two blocks away from our house;
His current preschool, which he could legally stay in until the summer after he turned six;
Kindergarten at our local district elementary school with learning support.

We knew that Charlie was not ready for option 4. Kindergarten today is not what Kindergarten used to be 20 years ago. No Child Left Behind has changed that and not for the better, in my opinion. Kindergarten today is reading, writing, it is a full day program, basically it is what First Grade used to be 20 years ago. So we crossed option 4 off of the list right from the start.

The Intermediate Unit's psychologist made it clear to me well before the meeting, that she felt that Charlie was ready for the Life Skills Class and that in her opinion that would be the best placement for him. She pushed hard for that option. I mean, she was determined that she wanted us to know that was his best option, in her opinion, for Charlie at that point. I balked like a mule at the edge of a cliff. She said, "Do you really want Charlie to be in a class with three year olds?" I really didn't think that Charlie was developmentally that different from three year olds, or that it bothered him a bit what age the other kids were, but what I really wanted was for Charlie to continue in the Verbal Behaviors program which had begun at this school in January. It had made a huge difference for Charlie in just six months and I wanted him to continue Verbal Behaviors for another year. Let's just say, we didn't have a meeting of the minds on this whole transition thing.

The Life Skills class that I mentioned earlier is located in a school 18 miles away in the next town over to the west. There are no non-disabled kids in the class, unlike Miss Ginette's class which had some kids who were typically developing children. All of the other kids have some sort of cognitive disability, some suffer from mental retardation, some also have physical limitations.

I visited the school with Charlie and Rachel, accompanied by Amber and we were met at the front of the school by the IU's special education administrator. He showed us through the school. The school is just so awesome, it is new, colorful, the library is so neat! I was thinking, WOW! Charlie would love this! The administrator led us down a long hall, then we took a right, past some bathrooms and finally down near the end of the hall. Charlie balked at the door to the class. There was a slight urine odor and Charlie just refused to go in. Amber said that she would stay outside with him, after I had tried to carry him in and he thrashed and rolled in my arms and we could both see a major meltdown coming soon. She took him out to the playground. Rachel was good and sat with me and I was able to really get a good look at Life Skills.

As we walked into the Life Skills class, which is about twice the size of an average classroom, I could see that the room was full. There was a lot of special equipment in the room, a telephone set-up which would allow kids to play act a phone conversation, some recording/play back equipment, about eight or twelve wooden desks set up in three rows in the center of the room. These were older style desks with plastic chairs. Not the newer trapezoid shaped desks that many of the other classes had. There was not a lot of room to move around in the classroom, it seemed slightly crowded. I felt a little claustrophobic, but maybe that's just me.

There was at least one teacher, maybe two, I wasn't sure, also about three aides and maybe six or seven kids. My impression was that the class is small for the amount of kids, adults and equipment that it contained. It felt cramped. It was painted pale green and seemed cheerless. There was not the artwork hanging up that the other rooms had, no posters, no sound. It was very quiet.

The kids sat at their desks and worked on papers. One child raised his hand. His hand was up for a long time, but none of the adults noticed it. Eventually he dropped his hand and went on with his work, ignored.

I felt that it was a grim room. I was not impressed when I saw it. The kids were sweet, and some smiled at us, one boy talked with me before I left, but I wanted more for Charlie. I wanted a classroom with colorful pictures, art work, a circle area, you know, I wanted Kindergarten for Charlie. Toys, books, fun stuff. I was told that those things are too distracting to the kids. I wanted some noise, some fun, some play. Is that wrong?

When I asked the person leading me through the class what the kids are taught, he told me that they learn letter and numbers, sight-reading of ‘danger’ words and how to count money, necessary social skills. They are given developmentally appropriately core subject assignments, which they complete with the help of the aides. At 7th grade, they transition to a school that is an hour away. This secondary school becomes their vocation school. The kids are assessed to determine what vocation they might fall into. Most of them have an aptitude for cleaning and many of them work on the school's custodial crew as part of their schooling.

I was appalled. I was horrified. I strongly felt that putting Charlie in that class would be low-balling his abilities and short-circuiting his potential forever. Every single year that he was in that class he would fall further and further behind kids his own age group. Charlie was catching up! He was, at this point, up to 36 months on the Denver Developmental Test. He had come 18 months in a ten month period. He was accelerating. We didn't want to stop that acceleration. But in the mind of the administration and the psychologist, Charlie would never catch up. Even hoping for that was a fruitless waste of time and resources. Put him where he belongs and where he will be safe, in Life Skills. I was grateful that we live outside of the school district where Life Skills was located. If we lived in that town's district we would not have had a choice and they would have forced Charlie into that class. They force all of the autistic kids in that town into life skills.

Chuck and I felt that the best approach was not on the list. We kind of made it up on our own. But then, that is what we have always done with Charlie, is to see what is out there and try to tailor a program to Charlie, rather than vice-versa. Our proposal to the team was that Charlie continue in Miss Ginette's class throughout next year and at the same time, adding to that three days of traditional preschool taught by Miss Kitch, here in our town. We got a little initial resistance, but the woman who is the head of the Potter County Autism Team was on our side and I think that pushed things in our direction.

Monday

Tuesday

Wednesday

Thursday

Friday

AM

Ms. Kitch

AM

Ms. Kitch

PM

Ms. Ginette AM

Ms. Kitch

PM

Ms. Ginette AM

Ms. Kitch

PM

Ms. Ginette AM

Ms. Kitch

This was an aggressive and challenging schedule for Charlie, and I was concerned about Charlie having to get used to a split schedule with van rides on three days a week and then Monday and Friday with no afternoon classes and weekends off. I was sure that he would be upset by the constant changes. But what I didn't count on was how much Charlie would love the addition of the new school.

Ms. Kitch's school was located in the first floor of the Baptist Church in Ulysses, PA. It was a spacious room with tons of fun things to play with. This would give him an opportunity to interact with neuro-typical kids on a level that is like what Kindergarten used to be like.

Where we live, in Potter County, PA there are so few kids in the district that there is only one elementary school and one high school which are located in one complex with a large parking lot between them. Our class sizes average about 15. Graduating classes rarely exceed forty, but most kids do graduate. Last year there were no dropouts at all and the administration found that there is actually no way to present zero attrition in the paperwork that has to be submitted to the state, it is assumed that there will be dropouts.

The High School and the Children's School have about 680 kids and this forms the entire district. The kids all start off in preschool together and eventually, they graduate together. They form their peer group early in preschool. By kindergarten they are fast friends. I wanted that for Charlie. Kim, Ricky and Andy changed schools a lot, we had to move a lot due to my job situation as a single mom. They lost friends with every move. I didn't want that for Jon, Charlie and Rachel. I didn't want Charlie to have his friends from school to be located in another town where he would never see them outside of classes. I wanted him to have friends and to be in school with Jon and eventually, Rachel.

I felt it was essential for an aide to be with Charlie in the regular preschool. I didn't know a lot about Aides and soon learned some essential lessons. First of all, an Aide is a person who is hired by the school and although they are required to carry state clearances, they are not required to have any training at all. In fact, the schoolbus drivers are more highly trained than aides. Not that there are not some excellent aides out there, but there is no requirement for training at all.

I was informed about the differences between aides and a TSS, which was what we really were looking for, although we didn't know the right term. Knowing the right words is essential. TSS services are provided by the Wrap-around program, which is funded and overseen by the State and provided by local mental health providers. Wrap-around provides behavioral management services in three tiers. The top tier is a psychologist who diagnoses the child and decides what course of action is required. The second tier is a mobile therapist who oversees the therapy which is carried out by a Therapeutic Support Staff member or TSS. The TSS is the person who interacts with the child on a day to day basis. This was a lot of information to take in at one time, but I was glad to learn the difference between aide and TSS before school started and we would have been stuck with an aide when what we needed was a highly trained TSS.

We first tried the closest agency to us geographically that provided wrap-around services, but I had some problems with that provider. The first problem was that the behavioral mobile therapist who came to the house was unprofessional. She was dressed in a t-shirt and jeans with no bra on (believe me, it was obvious!). She lounged on the sofa with one foot tucked under her bottom and an arm thrown over the back of the couch. I had a feeling that given the opportunity, I would not hire her even for a babysitter. I also found that this agency was loosely run and did not really have good operating standards. The staff was late for meetings, which they had called at their own office and they were forgetful of important details. Papers were lost and sometimes they called Charlie by the wrong name. I just saw red flags and canceled our services with them.

I contacted a different agency before giving up (which was my initial impulse). This meant driving Charlie over an hour to their office for an evaluation. The trip was fine and the office was well-organized and the staff was professional. I didn't know who our TSS would be, only that she was new and excited about working with Charlie. After meeting her, I knew that she was the one for Charlie. She was great from the beginning. Her name is Amber. Charlie is so lucky to have her.

Amber, from the beginning, took an approach with Charlie that worked well. Many other therapists, even dating back to the Early Intervention Program, who worked with Charlie would chase him from room to room to get his attention. Amber brought cool toys and let Charlie come to her. Very soon Charlie attached to Amber very well and now they are a great team.

Amber began working with Charlie before he started our town preschool and integrated herself into his life so well that she has just become another person in his life that he accepts as well as any of his siblings or even us, his parents. Amber is just part of his life.

The plan was that Amber would accompany Charlie to the local preschool classes and help him interact with the kids and teacher. Wrap-around is not allowed to go to the Intermediate Unit school, because this would be considered double-dipping by the State, since behavioral services are already provided at the school and the school is funded by the state. Amber did go to the school on her own time to observe their program and see what they were doing with Charlie. Having Amber with Charlie at Ms. Kitch's school would be crucial for Charlie, without it, it would be sink or swim and I felt he would sink without her. He was just not able to be without this support. If I could I would do it for him, but he would at least had an helper all to himself.

We are fortunate to live in a small school district where the administrators know the kids. Also, Chuck is a physics teacher at the district, and being an employee helped place us on a first name basis with the folks up there. We were able to speak to the school administration well before Charlie's placement in Kindergarten, in fact while he was still in the developmental preschool, and line up our options for the town Preschool and later, Kindergarten. They seemed to be excited to have him. This is important for me, because I need to look ahead and make plans. That's just me. Just a trace of obsessive/compulsive. I don't think that they treated us any differently than they would another set of parents, but it made it easier for me to interact with them, because I knew them already.

The administration told us that they could offer a full-time aide for Charlie, in case at some point the state stops the TSS funding. They were willing to help him stay afloat in a regular classroom with learning support offered throughout the day. They are able to provide him with assistive technology when it is required, and they made plans to set up a sensory room for Charlie. Charlie would be the only child with autism in the lower grades. There is one other child with autism in the school, but he is older. There are less than ten kids overall who have major disabilities in the district.

So Charlie began the year with Ms. Kitch and Ms. Ginette. I have to talk about Ms. Kitch's class because her class changed Charlie so dramatically. Charlie was already used to her class because Jonathan had attended two years before. Every afternoon we would walk him to and from school. Also, the WIC program was located in that building on one day a month, when school was not in session, and we went every two or three months to get Charlie and Rachel's WIC vouchers for milk, cheese and cereal. So he already knew and liked the classroom.

This was the first time that Charlie was involved with other kids who lived in town. Basically he had friends for the first time. One of these children, Holden, lives across the back yard, just over the fence from us. Charlie and Holden were able to play together once in a while. When we saw kids walking past the yard Charlie would get excited because he knew them. Many times he was so excited that he could not get out the words, “Hi, how are you doing?” He would just run around excitedly, like a little wind-up toy.

He loved going to school every single day and all of the things that I was so worried about never materialized. That is not to say that things were all smooth sailing. Other things came up that had to be dealt with. Sometimes Charlie would decide that it was time to go potty and would begin pulling his pants down as he was making his way to the bathroom and the kids would giggle. Fortunately, Amber was able to extinguish that behavior.

Charlie did his share of screaming, but as the year progressed he did that less and less. One funny thing that happened is that when Charlie was six, he was invited to a birthday party for the first time. His friend Gavin was having an outdoor party. Gavin sat by me where Charlie and I were playing at the sandbox. Gavin asked me if I could make Charlie scream. I asked him why he would want Charlie to scream. Gavin said, “I LOVE it when he screams!” I got the idea that Charlie was doing in class what a lot of the boys secretly wanted to do and they got a little thrill that at least someone got to get away with it once in a while.

Charlie was snack helper on occasion, he walked around the classroom and gave out the snacks and the paper napkins. He loved being a helper. Charlie loved it when they would have circle time and the kids would tell “news”. This is when kids would say what was happening with them. Ms. Kitch would write on the board, “Charlie Says, 'I have a truck'” or whatever the kids happened to have to say. At one point during the year, I was working on the computer and Charlie came up to me and said, “Tessa said,... I began typing that on the keyboard and Charlie watched the words appear on the screen. He kept saying words and I kept typing. I knew there were words that Charlie could spell, such as his name, but when I moved back and let him to type, he was able to write a lot more, by finding those letters on the keyboard and typing them out. I was amazed. I gave the list to Amber the next day. I think she was also stunned that he was able to spell so many words and put into words phrased that he was not able to verbalize.

Charlie made some very strong friendships. He especially liked the girls. There were two, Tessa and Abigail. If Charlie had a hard time getting up in the morning, I would say, do you want to go see Tessa and Abigail? He would be out of bed in a flash. Aren't friends great?

Charlie was also doing very well in Ms. Ginette's class. Toward the end of the year he wanted to lead the circle time, he would sit in Ms. Ginette's chair and pretend to be her. He would tell the stories and lead the songs. I could hear the pride in her voice when Ms. Ginette would tell me what Charlie had accomplished recently.

Charlie went through his year of dual preschools and finally the time came for graduation. It was a real tear jerker. He finished both programs so well. He was now speaking in full sentences all the time. He still was not communicating back and forth, but as far as expressing needs, he was doing well.

We still had Amber with us during the summer days. She kept up working with him, teaching him to control his behavior and taking him out in the community. He learned to ask other kids at the park to play with him. He learned to walk through the store without bolting and grabbing things off of the shelves. He learned to ride in the car better than we ever thought he would be able to do.

We did have some problems. Because of the reinforcers, sometimes we would feel compelled to take him where he wanted to go, or do what he wanted to do, because he was phrasing a question and we didn't want to say No. Finally we learned that we had to say no. Charlie had become what is called a Manding Monster in the Verbal Behaviors program. Meaning that he was being taught to ask for everything. Unfortunately, in the real world you can't have everything. So, we had to begin teaching him that not every time that we go into town will we go to McDonalds and get a toy. It was hard and there was a lot of screaming, but he learned to sometimes take no for an answer. And we also learned that if we tell Charlie in advance what is going to happen we can avoid problems.

We would say, “Charlie, first we will go to the drug store, then we will go to the dollar store and get a toy.” At that point Charlie could wait for the toy. Eventually I introduced the concept of “We are going to the store and I am not buying a toy today.” Sometimes he is ok with it, sometimes not. But he does understand it.

Now that he could ASK questions, we began working on answering questions. This is harder for kids than asking. Who, what, where are hard concepts to learn. How is really hard. “How Come” is a phrase that is used a lot and it doesn't make an sense to Charlie. It was a long process, but now he is able to ask and answer questions that are needs based. If I ask, “What would you like to eat?” He can answer. Prior to this I would say “Eat?” And he might answer with a word, sometimes he might take me by the hand and show me what he wanted. He is also able to ask me, “Where is the car?” As time goes by we are teaching him Why and How questions. I have no doubts that he can learn those concepts, but sometimes it is a matter of trying to teach a concept and if he doesn't get it, then waiting until later in his development, maybe a couple of months down the road and trying again. The only failure is to assume that if he can't learn it at six than he can never learn it. We just keep plugging away.

Chapter 11 - Kindergarten

2006-11-09T15:02:00.001-08:00

Charlie began Kindergarten in August, 2006. He was taller than any of the other kids by a head. He loved his school right from the start. The reason that he loves this particular school so much is that his big brother, Jon, went to Kindergarten there, and each open house and school conference that was held for Jon would allow Charlie to see the Kindergarten rooms, play grounds, the school in general and he was enthralled. We also frequently play at the school's playground when the weather is nice. During the summer of 2006, Amber would take him up to the school frequently to play and meet his teacher, he learned the layout of the school, the names of the teachers. He learned about how the cafeteria works well before school started. All of this made the first day of school a whole lot less stressful than it would have been if we were just throwing him in the pot with no preparation.

Ok, another big reason that Charlie wanted to go to the “big” school (vs. the preschool) is that Daddy teaches there. Chuck teaches high school science for half of the day, the rest of the day he is the District's Technology Coordinator. In larger communities a district would have a Technology Coordinator, with a team of technicians under them. In this tiny rural area, Chuck is all they have and he does it on a part-time basis. He goes from the high school to the elementary school fixing things, installing computers, making sure the network stays working and during the day he sees Jon and Charlie from time to time. Charlie knew that he would be going to school with Jon AND Daddy and he was ready when the school bus came for him.

The trip to and from school was also another of those multiple options things, where we had to decide what we wanted for Charlie.

Chapter 12 - Sensory Issues and Routines

2006-11-09T15:01:00.000-08:00

A lot of kids with autism have sensory issues. They are overwhelmed by sights, sounds and feelings that they cannot control and filter. Touch, sounds, lights, tastes, smells all affect kids with autism differently; I will try to explain how they affect Charlie. Please remember that as Charlie has aged his sensory issues and challenges have changed.

At one point when he was about three, Charlie would not wear underwear. Sometimes we would get lucky and he would allow it. Finding out that Hanes makes snug fitting boxers with no tags and no leg elastic have helped this. Charlie just hates the feeling of some types of clothing. If he could be naked all the time he would be. Until he was five, he would not wear a swimsuit in a pool. After all, do you wear clothes in the bathtub? He learned to wear a swim suit only when we found one that was like shorts and a tank top, attached together. It was snug and had floaties built into it. That one he will wear, as long Rachel and Jon are wearing one too, but for the most part he wanted to be nude.

He once went from September through April wearing only a silky, nylon Spiderman costume (with built-in muscles) every single day. If he didn’t have the outfit on, he had a meltdown. Finally it was so ragged that I threw it away and decided to just deal with the tantrum. I guess it is unfathomable, but he didn’t even seem to notice it was gone.

Clothing issues are huge with Charlie. He has some shirts that he likes. They are getting pretty ratty now, but he gravitates toward them every day, digging them out of the dirty laundry if he can’t find them elsewhere. Keeping them clean is a priority for me. For a year he would always wear his pants so that the legs are hiked up over his calves. He loves to wear my shirts and has started wearing his Dad’s shirts too. It seems like a security issue when he wears our clothes. We know that when he comes downstairs naked except for one of my big pink sweaters that something is bothering him. That is time for big snuggles and extra attention. He is reaching out to us in the only way that he can. When he is wearing Daddy’s shirt, it is apparently that it is Daddy’s attention that he wants. Maybe we are reading more into it than there is, but that is how it seems to be to us.

Sometimes sensory issues can work for us instead of against. Charlie dislikes being dirty. We were very lucky that Charlie potty-trained himself. We have no illusions that we trained him, but somehow he got the idea and just refused to wear diapers and started using the toilet. It has been a miracle for us. Many kids with autism are not capable of it. Without potty training it would be even more difficult to get Charlie integrated into school. It's hard to mainstream a child who is not potty trained. The schools simply do not want to deal with that issue.

It took Charlie until the winter of 2005 to actually keep shoes on. I think that school has helped him a lot in this. He still kicks his shoes off as soon as he gets home and goes barefoot in the house and outside if it is not freezing. I find shoes outside and bring them in, hoping that he will get used to finding them and leaving them in one spot. We are on constant watch so that he does not go outside in inclement weather without shoes or a jacket. He does not seem to feel the cold and heat the way that we do. He will go outside in the freezing cold without a coat or shoes, and conversely, he will go out in the blazing summer heat wearing a hot sweater. We are always on the lookout to make sure that he is properly dressed.

A lot of kids with autism have problems with eating and digesting some foods. Charlie had acid reflux until he was four and for years would vomit at night, every night. This stopped after the tongue-tie surgery. He has not had an episode of vomiting for over a year, other than actual stomach viruses. He has a pretty rigid diet of foods that he will eat. These foods include chicken nuggets, raviolis, apples, mandarin oranges, peanut butter and jelly sandwiches and mini pizzas. That’s about it. Oh, and fruit snacks.

Charlie moved into eating actual foods very slowly. At first, and up until he was three his only food was Gerber Oatmeal Baby Cereal and breastfeeding. One day Charlie just stopped nursing at age three. He never wanted to nurse again. I am not sure what made the difference. But I was pregnant with Rachel, so maybe the quality of the milk changed. Either way, I was relieved. Charlie then switched to Capri Sun Fruit Punch Fruit Juice as his only liquid after he stopped nursing. In the past year he has added water to his list of drinks that he will choose. He has never had milk, he will not even hold a glass of milk. He suddenly started liking donuts when he was four, but for a year called them ice cream.

Charlie loves baths. A lot of kids love water, but for Charlie baths are soothing and exciting at the same time. He can spend an hour or more in the water. He can't stand to hear the water running into the bath or draining though, we have to do that while he is out of ear range. Once in a while things get quiet and we think – Uh oh, where’s Charlie? The bath is the first place we look. He will be sitting in the tub naked. No water. Just Charlie waiting for us.

He loves to splash and gets water all over the floor! He would not let me pull the shower curtain to keep the water in. It took me two years of frustration to finally hit on a solution for his splashing that works for us. I took a shower curtain that was clear and cut it in half lengthwise. I got another shower curtain rod and when he gets into the tub I put up this special splash guard at about 3 feet above the tub edge. That allows him to splash and for some reason this smaller curtain doesn’t bother him. I don’t know why. Here is the kicker. Now that he can splash as much as he wants to, he doesn’t do it anymore. Why??? I guess I will never know.

Everything from eating to sleeping has to be part of Charlie’s routine. We try not to vary the routine because it will set off screaming. It’s not that he is controlling us by his routines; it is that he is able to deal with the stress of living in a world that he can’t understand by having comforting routines. He is controlling us with the routines too, but it goes both way. I can’t go into all of his routines, it would take volumes, but I will try to hit some of the major ones.

One of his routines is that when we go shopping we hit the same stores in the same order and finish with dinner at the same restaurant, Wendy's. He eats the same meal each time, chicken nuggets – no sauce – and mandarin oranges. Always. He even wants to use the same tables each time. God forbid there might be someone at that particular table.

Another routine is that he always gets his bath at a certain time; the house lights are dimmed by us to alert him that bedtime is coming and it is time to quiet down, and he falls asleep in a certain way. Everything is a routine. We crush up a melatonin tablet and sprinkle it on a mini-pizza or pizza rolls, he eats this before bed and now he is sleeping through the night. He falls asleep on the couch and Daddy carries him up to bed. We also have a routine for mornings, when he is getting ready for school. I make sure that everything is done for the morning, shoes are put where we can find them; Jon and Charlie's bookbags are ready, lunches are packed. His favorite clothes are ready to go too. He gets up, gets dressed with help and is ready to move on to school. That routine has helped us a lot. Mornings are less stressful when everything is ready the night before. No last minute searching for a book or one shoe.

Upsetting the routines by taking a trip or visiting a doctor’s office or even decorating the house at Christmas or Halloween time, can take a long time to get over. You have to ask yourself it is worth it to upset the applecart. Sometimes it is, sometimes it’s not. Lately he has been better at the doctor’s office – to my amazement and delight. It seems like the doctors office has become a routine in itself.

Before autism, we used to take a lot of trips and just GO! But we have had to stop taking family trips so that he doesn’t become upset. We do still go camping, but it is much less frequent, and we must stay in a cabin so that we can lock the doors and have a bathroom handy for Charlie. In case of rain, cabins are better for Charlie too. The sound of rain on a tent is hard for him to handle. Actually rain, in general will kill an outing. Charlie is terrified of rain and thunder. Even grey clouds start him moaning, priming him for a meltdown.

As Charlie gets older his moods and the things that bother him change. It is good for me to look back and remember what has come before, it reminds me that he will probably grow out of some of the things that impact him severely now. I try not to worry about what will bother him in the future. I just deal with things day to day.

Chapter 13 - Brothers and Sisters

2006-11-09T15:00:00.000-08:00

I was married the first time at age 17 and had three kids and one divorce by the time I was 21. I raised those three little ones alone working full-time and then some. Throughout my single working mom career I worked as a legal secretary, I taught CPR at night, I was a dental assistant and worked with a photographer as his office manager. Not all at the same time, but in different stages. My kids went into daycare immediately after the divorce. Daycare 20 years ago was not what it is now. It was a cold and scary place. The kids have said afterward that there were times when they were mistreated, but they never told me. We had one sitter at home and it turned out that she was letting her older daughter hit the kids frequently and I didn't know. It was really hard and I felt like I had pretty much been through everything that a parent could be through, including one child who attempted suicide at age nine right after my mom died.

But life changes with each child. Chuck and I married when Kim was 14, Rick was 12 and Andy was 11. When Jon came along, Kim was in High School and and Rick and Andy were in Junior High. Kim was preparing to go to off to Alaska to college. She said that she wanted to get as far away from me geographically as she could. I am still not sure if she was kidding or not. Our relationship is certainly better now than it was back then. At least I hope so.

I wasn’t sure how my having more kids would affect Kim, Ricky and Andy, but they were generally good kids and so I wasn’t that concerned about blending the families. A lot of dynamics changed when Chuck and I got married. Chuck would be a good father - that much I knew. He didn’t have kids of his own, although he had been married before, but sometimes you can just tell that someone will be a good parent. Prior to our marriage Kim had been pretty much my right-hand and after the marriage she felt put aside. Andy had been the baby. I remember telling him he would always be my baby. What would happen when we had another? I didn't know.

Jon’s impact on the family was like a thunderbolt. He was a child who had colic for four months. Now if four months doesn’t sound long, you have not had a child with colic. Constant screaming coming from an 8 lb package for months on end can make people think, “What on earth were we thinking??” Once we even had to call 911 when Jon stopped breathing during a screaming fit, but by the time the paramedics arrived (within 2 minutes) he was breathing again. There were times that nursing calmed him and times when it made him scream like his stomach was on fire. I spoke with a lactation consultant who advised me to get all diary products out of my diet, and with that, the colic eased and then disappeared. As Jon got older, there was some sibling rivalry between Jon and Andrew, who had been the baby before Jon came on the scene. But nothing major. I did keep a close eye on the older kids to make sure that they were treating Jon well.

In May of 1999 our house caught fire. The BBQ grill was too close to the siding and this 100 year old home, which had been insulated with old newspapers under the siding just went up like a torch. The fire ate it's way up the back end of the house and devoured the attic and started burning the second floor bedrooms beneath the attic.

Kim and I were playing on my bed with Jonathan. We were literally two feet away from the attic door and if we would have smelled that smoke and opened the door it would have been a backdraft situation and I might not be here to write this story. Daniel Trevino, an old school mate of mine, and our neighbor saw the smoke from his house and told his wife, Sharon, to call 911.

He ran down to our house and tried to come in. Our golden retriever, Samantha, kept him out. The funny thing is that he was a mailman. He told us later that he stood for a split second on that porch and thought about that dog and then went back in through the door. I heard the commotion as I was dressing Jon. I sent Kim down to see what was the matter. She said, "The house is on fire!" I thought she was kidding, but she made me get out with Jon and we took the dog too.

We stood outside and watched the fire consume the house. Black clouds darkened the entire neighborhood. Fire engines raced to the house. We stood trembling on the other side of the road with the dog. Rick and Andy were visiting friends and Chuck had just gone to work. The funny thing is I hear of people who have died running back into burning buildings for material possessions, but it never once entered my mind to go back into that house to salvage anything. You could not have paid me a million dollars to go into that inferno. The black smoke pouring out of every window that the firefighters broke and the huge hole that they cut in the roof just set a picture in my mind that will never go away. It was horrible. To this day, when I smell woodsmoke from a wood stove or when neighbors are burning on Wednesday (our designated day to burn), I get scared and start sniffing the house to see if we are on fire.

I borrowed a cell phone from a by-stander and tried to call Chuck, but I couldn't even make my fingers dial the phone. I had never used a cell phone before this. The lady helped me call Chuck and I told him to come home, that the house was on fire and we were all safe. You can't imagine, unless you have been in that position, the horror of it.

While we were dealing with the aftermath the house fire and rebuilding our home we found out that I was pregnant. We are honestly not sure when he was conceived, so we were not really sure when he would be due. Life was pretty chaotic with contractors in and out of the house every day for nearly 5 months. We all lived in the living room in the house until other rooms were rebuilt. Also, our insurance would not cover all of the damages, so we agreed to gut the house ourselves and haul all of the debris out and into a huge 20 yard dumpster that was set in the yard. That saved us thousands of dollars, but the real price of living in the house while rebuilding it and breathing in all the creosote while gutting the house was that we all suffered lead poisoning. Including me, and I was pregnant with Charlie and unaware of it. So Charlie suffered lead poisoning in his first trimester. Lead poisoning causes brain damage.

In April of 2000 this lovely, sweet, quiet baby boy was born. We kept saying that if Charlie had come first, we would have thought that Jonathan’s colic was so much worse than it actually was, simply by comparison to this quiet baby.

Quiet is not necessarily good and in the first chapter I described how we learned that something was wrong with Charlie. I will not go back into all of that right now.

After the diagnosis, things started getting tense because of all of the visits to doctors and therapists. Remember Charlie does not like doctors at all. In-home therapy disrupted everything about our schedule. Or maybe it was because as Charlie was maturing and his needs were becoming more complex; his screaming to get what he wanted was becoming intolerable. We would yell at the other kids to stop making Charlie scream. This would make the other kids angry because they were being blamed for something that was not their fault. There was a lot of tension in the house. Frankly, there is always a lot of tension in this house and a lot of it centers on the autism. Not on Charlie, but on the autism. Autism is super stressful.

At the present the older kids are not living here at home, Kim is in the army, Rick is a married, and Andy is living in an assisted living community, dealing with schizophrenia. He began hearing voices and having visual hallucinations when he was just weeks away from graduation from high school. He spent two years in and out of hospital psychiatric units.

I have wondered if it was the fact that I had more children after I told him that he would always be my baby, that made him go off the deep end, but realistically, I know that schizophrenia is a genetic short straw just like autism. Did I cause Andy's schizophrenia? Did I cause Charlie's autism? No. I don't think so, but I will say here and now that compared to the dark, scary side of schizophrenia, autism is a walk in the park. Others may disagree, but I stand by that statement. Charlie has never threatened to kill me.

Jonathan and Rachel get along pretty well with Charlie. He is louder and more prone to screaming when Jon gets energized and starts running around. But the worst thing for Jon is that Charlie can’t play with him in the way that other kids can. So Jon has adjusted. They have a way of playing that doesn’t involve much talking. Jon talks, but Charlie doesn’t. They swing on the swing set or jump on the bed like regular kids. As Charlie grows he is able to talk more and more and that makes things easier between the kids. Winter is hard on the kids because they can't get out and burn off that energy. Around here it is freezing from October to May, so we have set up our garage as a place that we can heat and they can ride their Little Tykes cars and their bicycles and burn off some energy

Sometimes Charlie will go into Jon’s room and just trash it. That bugs Jon a lot. We help him clean up the mess, but there isn’t much else we can do. We were very hesitant to put a lock on Jon's door to keep Charlie out while Jon was at school. After living through a house fire, that is one thing that just scares us too much. A kid could get locked in and if it were Charlie, no one would even know where he was. We did put a lock on, but we put it up where none of the kids can reach it. Once Charlie was in school full time the lock was not needed as much.

Jon says that he loves Charlie, but hates autism. He wanted a little brother so badly and loves his little sister too, but even with two siblings, is alone much of the time because Rachel is too little and Charlie is just Charlie, and can't play Pokemon or Monopoly or even talk to Jon conversationally. Jon is a very advanced child and needs to talk, for him autism is standing between he and his brother having good times.

Rachel adores Charlie. Wherever he is, that’s where she wants to be. She lays on him when he is on the floor and he is very gentle with her. Although when Rachel was three days old Charlie picked her up out of her bassinet and dropped her on the floor like she was a doll. After that I didn't leave them alone together at all. Fortunately her bassinet was a type where she was only about four inches from the floor. That probably saved her life.

Now Charlie is better with Rachel and sees her as a person, before she was a tiny doll to him. It is nice to see them together. They are at about the same cognitive level right now, as far as play and communication skills go, but soon she will be progressing and we hope that Charlie will, in his own time. Just recently we have had to visit two doctors on the same day and Charlie did so well! We have hopes that the more he grows the less perceptible his autism will be and he will be able to live a life more like that of a regular kid. That may be unrealistic, but that is our hope.

Chapters 14 Autism and Marriage

2006-11-09T14:57:00.000-08:00

Chapter 14

How Autism has affected our Marriage

When you have a child with autism you don’t know what the future holds for your child. What schools will he attend? Will they be mainstream schools? Will he ever be capable of independent living? Will he ever be able to have a friend? Will he be teased and tormented at school or later in life. If he is teased or abused, will he even be able to communicate that to you? And the biggest of these concerns is what happens to Charlie if something happens to Mom and Dad? Scary thoughts, but for parents of kids with autism, they are things that we have to deal with.

We love Charlie, but sometimes it can be excruciating to be his parent. Charlie screams – shrieks – often - many times a day. He sleeps in our bed because he won’t stay in his own bed, even if he is placed there after he falls asleep. After Rachel came along we had to change plans. There simply isn't room for four in a bed and since I was nursing Rachel, just like I did the other kids, and co-sleeping is so much easier. So Charlie has ended up sleeping with Chuck and I sleep with Rachel. Many nights it is musical beds. Charlie might want to sleep with me, so that leaves me with both of them kicking me all night. Or I might take Rachel into the spare bedroom and let Charlie sleep alone in my bed. I hate our sleeping arrangements. I want to sleep like normal couples do.

For years, Charlie would wake up screaming nearly every night (usually several times a night) and it took a lot of effort to quiet him down. He communicated mainly by screaming until he was about five. A person can only take so much screaming and then you begin to become haunted by anticipation of the next meltdown. Will you be able to make it through the night? The weekend? I used to dread nights. I still dread weekends when the routine is shattered and the school is closed. Charlie gets so upset. He just doesn't know why there is no school.

My husband and I went years without a date just by ourselves. We stopped eating out at restaurants five years ago. Charlie would scream because of the violation of his routines. He liked to walk around to eat and that is not acceptable in a restaurant. Holding him in place in a chair would just make him scream. High chairs were impossible. He would not stay in them, he would just scream. It was so humiliating to be asked to leave Outback Steakhouse once when Charlie was four because Charlie was being loud. We haven't been back, although that had been our favorite place to go for a date.

Autism places a huge strain on a marriage, people who have kids can appreciate the sleepless nights that babies bring, the problems when a toddler is learning to express needs and you have to kind of interpret grunts and wails, but when that lasts for years and years with no end in sight it is just heartbreaking and sometimes marriage-breaking. There are a lot of broken marriages because the marriage could not survive a child with a disability. The stress is unbelievable.

Night terrors and poor sleep habits are commonplace to parents of kids with autism. Many times when Charlie wakes up at night shrieking, everyone in the house is awakened. Then we have to calm Rachel and Charlie both back to sleep. Fortunately Jon sleeps like a rock. He is out at 8:30 and sleeps all night.

Day after day this goes on. It is like a siege. After a while you can become pretty strung out from lack of sleep and then it becomes harder to deal with the child. It is a spiral which gets harder and harder to survive. Since Charlie started Kindergarten full time I can sometimes sneak in a nap during the day to take the edge off if Rachel is willing to take a nap, too. And since school has started his sleep routine has been easier. Now he is falling asleep at about 9:30 or 10:00 pm instead of 2 am. But still he is falling asleep on the couch and he is about 67 lbs. Chuck is wondering what happens when he can't carry him anymore. Charlie is not fat, but he is solid.

At one point I became obsessed with trying to find skilled respite care for Charlie. I was told during a preschool meeting that there is an office that sets up child care providers to step in when the parents need a break. That sounded great to me, just what we needed. They can do this full time or on a hourly basis. I felt that this could provide a caregiver that would be able to watch Charlie, one who understood autism, and one who was certified by the state not to be a sex offender. It took me months to even get Charlie into the program. We have never been able to use the services and I will tell you why.

There are about two dozen care providers in our county and about 18,000 residents. Those caregivers are responsible for caring for not only the kids with autism, but all of the people, in all age groups in this county. Those providers are on a list and a family with a person who is eligible would look for someone in their local area and call them to set up arrangements.

None of those providers were either willing to come to our house or they were already working for clients. They are only allowed to have two clients at any one time. Most were already booked. The rest were so far away that it was unreasonable to use them. So we were out of luck.The respite office told us that would have to find our own respite caregiver, have them agree to get the training and then try to keep them from moving away. We have not succeeded in finding someone who wants to get that training and work for the minimum wage that respite pays them. Also, the respite worker is only allowed to care for the person who is disabled. So we would still have to hire a sitter for the other kids if we wanted to go out with no kids with us. What a pain.

We have come up with another alternative. Sometimes we have had Rick and his new wife Jade babysit, but those times have been very few and far between. Most times we just accept the fact that we can't really get away. Life goes on.

The best thing for all of the kids is for Mom and Dad to be happy and to have a good marriage. We have realized that dating is not an extravagance, but a necessity to keep a happy, healthy family. Spending time while on a date talking about the kids is counter-productive, it needs to be a time to recharge batteries.

We live for our time in the summer when Chuck has 3 months off (the joy of marrying a teacher!) and when we can have cookouts and campfires in our own yard. We pitch our tents and sleep outside. We get through the hard times by visualizing the good times that will be coming. We hope and we pray that we can put up with the stress and not have anything else handed to us to complicate matters. We do see that Chuck’s parents need care as they become more and more disabled due to age. We also see that Andrew may never be able to live outside of an assisted living arrangement due to his schizophrenia, but we pray that nothing more is on the horizon.

There are days when we see glimpses of Charlie as a regular kid. When a phrase comes out of his mouth that is spontaneous, when he gives us a soft hug just because he wants a hug, or even when he gets upset that it is dark or raining and he can’t play outside. Those glimpses tell us that inside this child is a little kid who just can’t communicate his desires and needs. We need to be constantly reaching out to him but we hope and pray that one day we will find a way to reach more of that inner part of him that is inaccessible right now. And then autism loses it's foothold and we have a little more of our son back. Some people would say that is a unrealistic attitude to have, but so be it. We are not going to stop fighting. We are not willing to let autism win.

Chapter 15 - First Grade

2006-11-09T14:50:00.000-08:00

Charlie amazes me. From the very first diagnosis, we were told not to hope, not to wish that he would someday attend college or even attend normal classes and here today, I have before me proof that to hold Charlie to lowered expectations is a crime and a shame. This child has jumped over so many hurdles, I can't even begin to relate it here.

Charlie is attending first grade in our local public school. This year was a shake up from the start because our beloved TSS (Therapeutic Support Staff), Amber left us due to circumstances beyond her control. Her agency folded and the takeover agency was not nearly as good to work with as their predecessor. We were thrown into crunch time and the school jumped to Charlie's defense, providing him with a wonderful aide, Miss Sue.

Miss Sue may not have a BS in behavioral science, but she is a mom and a loving presence for Charlie. He has done well through an adjustment that might well have been pretty traumatic. In the end, we decided not to change organizations and get a new TSS, but to just let Charlie and Miss Sue and Charlie's first grade teacher, Mrs. Graves get to know each other without another influence butting into the mix.

Charlie still occasionally has episodes of yelling out or outright defiance, stating, "I am NOT doing that work." But I look at it as him testing the waters and seeing if these new teachers are going to stick to their word or back down and let him run the classroom. I think he is learning that they are just as tough as Amber was.

Here is where my amazement comes in, Charlie is writing. He is writing paragraphs and his writing is neat. Not just recognizable, but beautiful. He has a squirrelly hold on his pencil as it is clenched in his left hand, but what comes out of his brain through his paper is the same as every other kid in class.

Charlie is doing well in math as well. He comprehends money increments and can add money. Today with his math homework, I was stunned to see that he can count the money as well as Jon could at that age. He is able to add, subtract, count by fives, tens, backward.

He is a wonderful reader, he is beginning to read with inflection in his voice. His Dad asked me, "Do children with autism do that?" This one does. In our school, we have an Accelerated Reader program which tests the kids on books that they have read. Charlie has taken several tests and aced them all without special help. He is interested in reading, whereas when he was little and up to age four, he would scream if we tried to read to him. He devours reading now and his spelling is wonderful, he seems to have an instinctive sense about reading and spelling. I am so grateful, because this is something that is hard to teach to someone who lacks it.

Speaking of the other children, Charlie, Jon and Rachel now play together (usually loudly) just like any other three little kids. It is wonderful to watch. Not that everything is fun and games, but Charlie is out of his shell. His speech is so normal, so perfect, that it is a rarity that I have to even mention autism, to explain away some behavior, such as when I (stupidly) took him to an estate sale and he decided right then and there to use the bathroom with the door open and his pants around his ankles, showing off his bare bottom. He still has very little in the way of inhibitions. We have been talking about privacy lately.

Charlie has been riding the bus so well now, we scarcely have any concerns at all in that regard. He still runs to and from the bus, and the driver doesn't like that, but it is hardly unlike any other kid in this town. They are all just little kids and Charlie fits right in.

The children in class with him love him and accept him as one of the gang. Many of the kids cried when Miss Amber left this year. Heck, we all cried. But Charlie, was silent about it. He talks about her, but he can't really seem to understand exactly what has happened to her.

Prior to the start of school we were concerned, especially because of the length of time that the reading and math class involve. Two and a half hours of structured learning. We thought that there was no way that Charlie could manage that, but again we were wrong. Charlie has not had even a hiccup in his ability to manage that length of time and attention. He requires the assistance of the teacher and Miss Sue, but he is flying through his first grade experience so well that it brings tears to my eyes.

We still have issues with Charlie, he still yells, he still has things that he can not communicate, but more and more we are finding that what he can do, far outweighs what he lacks.

What can we expect of this child? God only knows, but we will be anxious to see him grow and learn, and we are very reluctant to box him in with false worries about what he is capable of.

Chapter 16 - Second Grade

2006-11-08T06:08:00.000-08:00

Right now we are on Christmas Vacation. 16 days off of school. Charlie is in hog heaven. He loves being off of school.

This year has been easier in some ways. Charlie is doing his homework better, probably because it is easier for him now. He is still in a traditional classroom with an aide to help him. By traditional, I mean that he is not in a special education classroom. In fact, he has a speech and language IEP, but autism is not on his IEP. This is to keep our school district's intermediate unit (the head of all of the school districts) from taking Charlie out of the classroom and putting him in Special Ed. They like to put all kids with autism into special classes and I have seen those classes, they are not for Charlie.

He still has Miss Sue as his aide. His teacher, Mrs. Daniels, has been great. She uses a lot of positive reinforcement, but still Charlie worries about getting "tickets", which are their way of taking recess from the kids for acting out.

Charlie is the best reader in his classroom. Sometimes he mimics other kids who are slow readers. Not because he's being mean, but because he sees that they get attention and prompting, and he likes that. I tell him not to do that, that it will make the other kids feel bad, I think he understands.

Last year he became the best reader in the entire first grade. He is good at math, keeping up with the other kids, but it is clearly not a love for him. I asked him once, after we read a book about astronauts, if he wanted to be an astronaut, he said, "No! I hate math and science!" I asked him his favorite subjects and he said lunch and recess.

He is getting better with testing. At first he would just mark the last multiple choice question that was said to him. A, B or C? C all the time. Now he is getting better with that at listening. Stories which are about fantasy things still really throw him. We had a story about the Lady in the Moon. He just didn't get it at all. He likes stories about real life happenings. He likes rescue stories. One of his favorites is about a man who was pulled out of a lake by his two dogs.

Charlie can write a nice hand, but like all kids, will tend to try to hurry and do a sloppy job, I have to try to slow him down and then he writes very nice. His spelling is awesome! He has not gotten less than 100% on any spelling test in the last two years. He has an intuitive sense of spelling.

Charlie is great with computers, he loves to go on Ebay and look for cars and trucks and watch videos about trucks doing burnouts. He will tell us the make, model and sometimes year of every single truck on the road. He knows about lifted trucks, vehicles with Flowmaster exhaust and he loves Altezza tail lights.

He also loves baby dolls and likes to take one with him shopping. He likes to strap her into the cart and pretend that he is the dolly's Momma. Did you hear me say pretend? Yes, he pretends now. He will pretend to be a dog or a daddy or a tiger.

In school, Charlie goes to lunch and many of his special classes, music, art and gym, alone, without Sue. He also gets on and off the bus without help. We are very proud of him. He still has outbursts, but he is very able to verbalize what is bothering him. He speaks in full sentences now, with proper grammar for the most part (tenses and pronouns still throw him). Charlie is able to do his potty stuff completely on his own and he does not wander away anymore. We are thrilled with his progress.

A lot of people look at Charlie now and when he has an outburst they seem to think he's being bratty. I no longer explain about the autism. I just let it go. The other day we were in Target. I try to let him pick one toy if we can afford it. I told him to pick one that was under $5.00. He understands money now. He decided upon one that had four Thomas the Tank Engine trains. When we got up to the counter we found that it had been mismarked and it was $40.00! I told him how much it was and that we would have to go pick another toy. He went back with me, after some initial disappointment and picked a Percy train that was $4.98. He has been telling people about his episode with the $40.00 train set. He told me that Jon and Daddy were very upset that he had been disappointed. In year's past, this would have been an episode where I would have just bought the damned trains to avoid a meltdown.

Charlie is getting better with animals. He still doesn't like to pet them. We have a LOT of pets, two dogs, two cats, a guinea pig and fish. We had a great pyrenees dog, who was very gentle, but Charlie was so scared of her that we had to put her in another home. We now have our Collie and we have a little mixed breed stray that we found. He tolerates those dogs well. He does not like the kitten that we found under our shed. She likes to lick people and he says that she will eat him up. This has made it so that Charlie will only sleep in his own bed with his door closed so that the kitten will not eat him. Win win! He's sleeping in his own room all night long!

Speaking of sleeping, he is no longer taking melatonin. Three reasons for that, it was making his dreams too vivid, he was having a really hard time waking and because we had to sprinkle it on his food just before bed, he was gaining too much weight. We went to triminic thin strips, which have benydryl, under the advice of our pediatrician. I told him to lick the strip, I said, "First the licking, then the picking!" He would be allowed to pick a toy out of our treasure chest if he took it. That did the trick and he takes it at night and sleeps through the night.

He has recently been able to tell me that he has dreams and once even told me what he had dreamed. This is a big thing, if you think about it, it's darned hard to describe to a child exactly what a dream is: A movie that plays in your head at night? That makes no sense to a kid grounded in reality, but he has figured it out and now he is not scared when he dreams.

Once this school year we had seventeen days (yes, I counted!) where Charlie was up every single night unable to sleep. Fortunately, for the last several months things have been better, but he still has those times when nothing works and he is just up. He's very happy, but very wide awake and he wants EVERYONE awake. That's just life. He also throws up a lot. It goes in cycles. He takes prevacid in a chewable tablet, which is for gastrointestinal esophageal reflux.It helps, but sometimes at night he just throws up. We keep a bucket on hand and at least now he gets that he has to try to hit the bucket. I hate cleaning up vomit, but it's not often, just more often than with our other kids, for the most part we attribute it to reflux and maybe bad hand-washing after potty time. We are working on those things.

Life is good, I will try to write more as time goes on. Thanks for visiting with us, leave a comment if you like.

Chapter 17 - Going into Third Grade

2006-07-29T08:19:00.000-07:00

It is July, near to the end of July and the kids are thinking about school starting at the end of next month. Charlie has hit some real milestones this summer and this past school year.

We took the kids cabin camping in Erie, PA. Charlie is a great swimmer, although he is just becoming confident about being under water. He swam at the lake nearly every day and we went to Chuck E Cheese, where he monopolized the "motorcycle helicopter" for hours.

There were lots of vivid storms on the lake and Charlie is terrified of storms. We used to try to ease his fears, but now, once we show him the weather on the computer and he knows what is coming, we tell him to stop asking about the storms. Otherwise he would ask us, "Is there going to be thunder?" a thousand times and no, I am not exaggerating.

This summer Charlie went to the same camp that he attended last year, Penn York Camp, but this year he stayed a week as an overnight camper. You can probably imagine my thought process, all the way from fears that he would not sleep in the cabin with the other kids, to fears that he would get lost or worse.

He loved camp. They assigned a counselor to him, one on one. This is not a camp for kids with disabilities, it's just a regular camp. And he did well. I was floored. I wish we could afford the $230 to send him to the art camp that Jon is going to in August, but things are too tight right now.

As for school, he did well in school. He did not fail any of his subjects, rather he did extremely well in reading, in spelling he never got less than 100% on any of the tests and he did well in math. There are some concepts that are hard for him and he is a bit lazy about adding and subtracting, but he's doing well.

He gets fractions easily and he can write a nice story, much better than he can tell one. Still, it's hard to know how much is him and how much is due to the extra help that he receives through the day. They try not to do his work for him or prompt him too much, but still one wonders.

Then something will happen here which makes me realize that there is so much more inside Charlie than we know. That was why I decided to send him to this camp. It was risky. He might have ended up hurt or missing. There is a camp for kids with disabilities not too far from here. I might have sent him there or just kept him home.

But I know that the ONLY time that Charlie is guaranteed to fail is when we refuse to allow him the chance to try something.

This year Charlie goes into third grade. New teachers, new things to learn. He's resigned to the loss of his summer freedoms, I have anxiety about what's to come, but I have learned this. Whatever I worry about most won't be the problem. There will be bumps, but they won't be what we anticipate, they never are. They are the things that come out of left field and surprise us, so we have to think on our feet.

Fortunately, we are good at that.

Going into Third Grade Soon.

2006-07-29T07:51:00.000-07:00

Houston, we have a problem

2006-05-20T05:10:00.000-07:00

Chuck and I went on a date last night. Something happened while we were out that really has me alarmed.

Charlie has been doing really well, he is now in third grade, but both Chuck and I both have realized, almost simultaneously, that Charlie's comprehension level of words that they are using in third grade is very low.

He is still spelling well, and he is doing the math, but as far as comprehending words like ray, ragged and such, he is just not getting it. How did I miss this? He talks up a blue streak, but this took me by surprise, he just glosses over words that he does not know, he doesn't even ask about them.

I am glad that we found out now, I am going to start working on word comprehension, but I realized that it's a daunting job, there are just so many words out there that he is going to have a hard time with.

I wrote an email to his teachers and the school counselor, I think we need to get the speech therapist involved and maybe look into creative ways to teach meanings with pictures. Feel free to give me ideas if anyone has some.

LIGHTBULB MOMENT! I just realized when proof reading this that maybe what we need to do is to teach Charlie to say, "I do not know what that word means" when he encounters something strange. I am going to sit down and write a social story about that right now!

Critical Decision Making

2006-05-01T17:05:00.000-07:00

Charlie is in Third Grade this year. We were told by a child psychologist at Pittsburgh Children's Hospital that he would never reach this point. He would "top out" in second grade. Ha!

The other day something happened that floored me. Charlie was telling me what he wanted for Christmas. He wanted a bike. A blue bike. I told him that we would be glad to get him one for Christmas, but he shoudl know that because Christmas is during winter he would not be able to ride his bike until Spring. December, January, February, March -- and then Spring is in April. I told him he would have to wait four months to ride his bike.

I told him that if he wanted, he could get the bike for his birthday in April and ask for something different for Christmas. That way he could ride the bike the day that he got it as a gift.

He said, "I will get a bike for my birthday and I will get a Spiderman Webshooter for Christmas."

Wow. Charlie is really coming along when he can have the self-control and reasoning to make a statement like that. It was very rational. He's not always rational. He cries like a baby when he skins his knees. He sobs.

This was a huge leap for Charlie which shows how far he has come in his thought process.

Charlie at the dentist.

2006-04-01T15:01:00.000-08:00

Kids with autism are challenged by the dentist. Maybe that's putting it mildly. Charlie was sedated when he had oral health problems. He had to have two crowns, two pulpotomies and a lot of other work - when he was four. It was hard, he was very sick after the anesthesia and shortly afterward, all of those little kids died during dental work like he had. I don't want to go there again. It's too risky.

Now he's nine. Today we went to the pediatric dentist that we have been going to for years. We actually drive three hours to see this dentist, because he's from our old town.

Today Charlie sat in the chair well, he did not balk at the napkin around the neck. I was thrilled. Then he allowed the hygienist to use the scaler on his teeth - major thing here. Before he always cried when approached with dental tools. We always backed off.

He had a good checkup. Next time we are going to try doing sealants, which are painless, but require his ability to stay open and let them use the water syringe and the suction. I am so proud of both Charlie and the dental staff.

Afterward we went to the zoo and had lunch. Right now he's running a high fever and he's consigned to carrying the bucket in case he vomits. Poor fellow, the flu has struck him.

Chapter 20 - Charlie Dreams.

2005-04-26T07:16:00.000-07:00

What does an autistic child dream about? One thing that I know is that kids with autism often can't tell us what's in their heads. Charlie has learned to communicate more than we ever thought he would be capable of, and this morning he shocked me.

I was sitting at the foot of his bed trying to get him up for school and he said, "I dreamed I pulled my tooth."

I told him that the reason he dreamed about his teeth was probably because he is seeing the dentist on Thursday and he's excited. He goes to a dentist in our old hometown and when we go we always plan to do fun things in the big city. We are going to go to the zoo on Thursday.

He was fine with that. He understood.

When he was younger, he would have dreams just like every other human on the planet, but they would wake him screaming. Even good dreams would freak him out because he would go from sleep to this state of confusion. I am glad that he's able to understand this way that his brain works.

NOTE: This post will appear on the front page of Charlie's blog for about a week, then I will move it into chronological order with the rest of the book. If you have not read Charlie's book, please start with the next post and thank you for visiting!

Chapter 21 - Bullying, you hope it's not going to happen, but it does.

2004-05-11T05:33:00.000-07:00

A couple of weeks ago, Charlie came to his dad and said that while he was playing at the basketball courts near our house, two kids, a brother and sister, came up to him and the boy, who is a friend in Charlie's class, told Charlie to drop his pants.

I guess Charlie did it, because he doesn't know any better and these kids told him it would be a joke. Lately we have been trying to teach Charlie what a joke is. But Charlie came to his Dad upset. We dealt with that with the school and they helped get a resolution.

Just last week we had another incident, this time on the bus and with another child. Charlie was told by this kid that this kid would "kick his butt". Charlie has been afraid to ride the bus ever since. It doesn't help that the bus driver is a freaking nightmare, screaming at the top of his lungs at the kids.

Charlie is terrified of yelling. I have tried to deal with this with the school, but the principal has not communicated back with me about it. Maybe they think that because Charlie is off the bus, that the problem is resolved, but the fact is that that there is a kid out there who is acting out toward Charlie.

That's not to say that Charlie is the easiest kid to get along with, especially on the bus, he hates the bus and get scared and sometimes screams. But we have to know what's going on. I am hopeful that the school will help pinpoint what happened and try to resolve it. i would hate for Charlie to get the kid of abuse that I got as a kid in school.