The financial distress of 2010 caused a lot of issues for us. We lost jobs, had to sell our big house in the Big Woods, with the outstanding half acre fenced yard. No sooner had we received an offer, than my mother in law passed away, leaving us her home in a suburb of Pittsburgh. A tiny brick home on a postage stamp lawn.
None of us wanted to move to the city after ten years in the country, but there are jobs in cities. So we packed our belongings into boxes, sold or gave away many things that would not fit into an 1100 sq. foot home. We downsized.
October 25, 2011 we pulled out of the driveway with a moving van following behind us. I cried. I cried for miles, silently, wondering how soon we could get out of the city. Feeling trapped.
A year and a half has passed. Really, it's not half bad. We have spent a year repairing decades of neglect to this old brick home that was my husband's grandfather's home. It's coming along. Chuck got a job, which is in his field. He worked as a pharmacy technician for seven months, a grueling job. I worked as a school janitor. It was rough, but things are coming along. We make due with very little now. We have adjusted to close quarters and train whistles at all hours.
We had been cyber schooling all three kids when we moved here, but Rachel mounted a campaign to go back to school. Thinking that Pittsburgh was autism Mecca, I enrolled Charlie into public school and Rachel, as well. The junior high was scary, so we opted for a nearby Lutheran school for him. We could only afford tuition for one child and that was a stretch.
I found out pretty quickly that school was not going well for charlie. He had one friend, but he had been placed in an all autism class, something that we had avoided up to that point. Frequent meltdowns of other kids were testing his strength. Finally, after being beaten up by two "normal" sixth graders, who were stealing his lunch, I withdrew him and enrolled him back in Agora Cyber School.
He still can't ride past that school without having a fear reaction.
We are doing well together during the day. The Cyber School allowed me to start him at a third grade level, although he is in 6th grade. We have completed third grade English and vocabulary and are on fourth grade now. I take him frequently to the library, where he picks books that are interesting to him and we read during "snuggle time". We grab a book and read under the covers in my big bed.
I am less interested in his rate of words per minute than I am in developing a love of reading. He had become afraid to read at his old school, because they were making him read books that he could not understand.
Charlie has learned his times tables by rote, a process frowned upon by schools, but I believe that committing times tables to memory gives one the ability to live life without a calculator in the pocket. He has learned long division and is learning how to develop beautiful cursive writing. We are learning about Reńe Descartes and how his discoveries relate to cartography, which Charlie loves.
Right now we are on Geometry, we are reading Charlotte's Web, we study ecosystems in science and we are planting an herb garden. Charlie is learning to cook and can make an excellent Roux. We learn, we love, we go on outings to see the penguins at feeding time and we learn estimation as we shop at the whole foods store, rounding prices and estimating our total bill.
Charlie is an adolescent with sometimes smelly feet and armpits, but he still cries like a toddler and suffers from extreme fears and separation anxiety. He's on Abilify, which is a medicine designed to keep him from being so fearful, but it has caused a lot of weight gain. I'd like to try using a service dog to help with the fears and try to get him off the medicine and he,p him get back to a healthy weight. But dogs are expensive and without the medicine, he hits himself in the face. I don't know what to do.
We just keep chugging along, trying to decide what happens next and how to help him cope with the changes. Trying to change our lives and make new friends.
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.
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”
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.