Life with Karl
by Sethany Griffin

First let me preface with this: My child is perfect. Actually both my children are perfect; I am a very lucky woman. I would not change anything about my life, because as hard as it has been, and as hard as it promises to be, this is the path that God meant for me. I am writing this to give some insight, some support, and some comfort to those who are living with a child with special needs. You are not alone, even though it often feels as if you are.

When my first child, DJ was born, I was managing a group home for mentally ill women. In my seventh month of pregnancy one of the women I cared for attacked me. I went out on Maternity leave the next day. After my leave I went to work for a different company managing two group homes for mentally retarded and mentally ill adults. After about seven months I discovered I was pregnant again and was overjoyed. This time we were hoping for a girl to balance out our perfect little family. It wasn’t long after that that we had an ultrasound and were told we were having another boy. For about ten minutes I was devastated, and cried openly in the ultrasound room. I blamed it on hormones, and accepted son number two.

I spent my days up until delivery teaching, supervising and wrestling with, ten different mentally retarded people. When I went out on early maternity leave because I could no longer safely restrain an individual if it was needed, My husband made it very clear that if I chose to go back into that line of work after our child was born that he would divorce me and take the children. Although I knew he would never leave, I also knew that this job was placing a tremendous strain on our family. You see I was on call twenty-four hours a day, seven days a week, and I often had to restrain individuals. I would come home with scratches, bruises and black eyes all the time. My mother was horrified, my husband was afraid everyone we knew would think I was a battered wife, and I was physically and mentally exhausted.

I spent a long leisurely maternity leave, attending to my new baby and wondering what I would do when my family leave was up. After much discussion with my husband it was decided that I could not go back to the last job. It would not be fair to our sons if I had to leave on a moments notice. I needed a “real job” with “normal” hours and good pay. I went to work for one of the largest insurance companies in the state and worked in the Mental Health department. Initially, this job worked quite well for me. I worked 9-5 and did nothing but answer phones and look up doctor’s names on line. Occasionally I would get a “crisis call” from a member who was suicidal. (Why anyone would call their insurance company when they were thinking of killing themselves I will never understand) It was my job to keep the caller calm, and talk to them and try to get information from them until “real” clinicians could get themselves to my phone to try and talk them into checking themselves into a hospital. I lived for these calls; it was the only time I actually felt like I was helping someone. It was something I greatly missed from my last job.

During all this my boys were growing so fast. They both met all of their milestones, had lots of ear infections and bronchial infections. Karl had more than his share. He was a sick little baby until he was two and we were in the emergency room almost monthly. DJ was a happy four year old, interested in four-year-old things. He was talking up a storm and babbling conversations with his little brother and everything seemed fine. Then when Karl was almost three he stopped talking all together and started to point at the things he wanted and screech. He would stomp his feet and throw himself to the ground and just point. He started spending all his time spinning himself in the kitchen. He seemed lost; I would find him staring at things that were not visible to me and smiling. He hated loud noise, and would cover his ears and scream. He stopped wanting to take baths. He acted as if the water hurt his skin. I knew something was “off” about him. I had spent most of my adult life caring for people with special needs. I knew all the signs.

After ignoring Karl’s odd behaviors as long as I could I took him to his Pediatrician. Within five minutes the doctor said to me, “ Mrs. Griffin, from what you are describing to me and what I am seeing with my own eyes (Karl was under the exam table rocking) I think you already know what is going on here. I think your son is autistic.”

There it was. Someone had said the BAD word. Someone who was supposed to know what he was doing had said the BAD word to ME. My first thought was, “ No, I am sorry, I have done my time. I have dedicated years of my life to the special needs population. MY SON can not be autistic.” Looking back, I believe what I actually said to the doctor in a not so polite voice was, “ I came here for you to tell me I was wrong. This was not very helpful.” Luckily my pediatrician had a few years under his belt and did not take my tone personally. He gave me some names of pediatric neurologists and told me to make an appointment as soon as I could.

I went home and called the first number that the doctor had given me and was told by an obviously overworked receptionist that the first available appointment was not for another three months. I not so calmly explained to her that this was an emergency. Little did I know that although it certainly was an emergency to me, Pediatric Neurologists do not consider “rule out Autism” as an emergency diagnosis. I reluctantly took the appointment three months away. After all, I should be grateful that a doctor from the world renound Children’s Hospital of Boston was willing to see my child. In the meantime, I called around to every single pediatric neurologist on a fifty-mile radius that my insurance would pay for to see if I could get Karl into an earlier appointment. I finally found one, out of another Boston hospital, who would see him within two weeks.

I took my Mom with me to this appointment, because I figured after all of the grief and heartache I caused her, she might want to be there when I got my first real dose when it came to my own children. When they called Karl’s name, he immediately dropped to the floor and refused to walk. I scooped him up and followed the nurse to the area where they weigh and measure the children. When the nurse attempted to place the measuring tool on top of Karl’s head he immediately started screaming and acting out. (I now know that he is extremely overly sensitive to anyone touching his head or ears). We followed the nurse into this tiny office and waited for the doctor to come in and verify that my child WAS MOST CERTAINLY NOT autistic. Unfortunately for me this did not happen.

When the doctor came in Karl had made himself very comfortable in the space between the wall and the head of the exam table. So comfortable in fact that for the first twenty minutes of the appointment he stayed in there and didn’t make a peep except to scream when anyone tried to touch him. The doctor asked about a hundred questions, about his behaviors, and family history and if he had any obsessive-compulsive traits. He asked about his eye contact (which was okay most of the time) and if he was affectionate. (He was with me, but was very guarded with anyone else). After a thousand questions, and several attempts to interact with my son, this doctor agreed with our pediatrician. Karl was autistic. This doctor then proceeded to tell me that Karl would most likely be a huge behavior problem as he got older and would probably require medication almost immediately. He said they were having a lot of luck with Risperadol. My experience with Risperidol was just that it was an anti psychotic medication. All I could think of was. “You want to put my three year old on an anti psychotic you nut job?”

We never went back to that doctor. It was a short walk from the hospital to the parking garage where we had parked my mother’s car. It was cold, and we walked in silence. I put Karl in his car seat, looked out the window and broke down. Why? Why me? Why my son? It was not fair. I had already shown God how compassionate I was by taking care of OTHER people’s autistic children. I had already secured my place in heaven, because I was a good person. So why had God placed my once perfect child on this path to destruction? I knew I was being selfish, and that Karl needed me to be selfless right now. Thankfully my mother drove home, because had it been me we most certainly would have crashed. I had a thousand thoughts going through my head. Would he have friends? Would he ever get married? Would I be able to care for him the way he needed? Suddenly the thought of losing him overcame me and from that moment I became this little boys fiercest defender.

Two and a half months later we went to see the other doctor, the one from Children’s Hospital. He asked all the same questions, and attempted to examine Karl the best he could. (Karl had again found his spot under the exam table). By this time, Karl had developed a few other odd little behaviors. If he was eating with his hands, he would only eat if he had an equal portion for each hand. For example, if he was eating a banana he would need a second banana for his other hand. This did not include splitting the fruit in half, because that apparently made it broken and he would throw it in the trash. He wouldn’t eat anything mixed. He loved yogurt, loved strawberries, but yogurt with strawberries in it would cause a tantrum and a forceful spitting out of the evil substance. The doctor again verified that Karl had an Autism Spectrum Disorder. He called it PDD NOS, or Pervasive Development Disorder not otherwise specified. He was much more positive about Karl’s future. He said we would need to get him into early intervention, to try to catch his language before it disappeared altogether. He said that over a few years, Karl’s diagnosis might change, for right now it basically just meant that he was severely speech delayed, but that he may be a “normal” boy some day. At least that’s what I told myself.

I spent the next few weeks in a fury of making appointments and setting up evaluations and trying not to think about the life of the people I had cared for. Since I had been responsible for the older populations, many of my clients had been in state schools for a large chunk of their lives. Back in the day, that’s what you did when your child had special needs. You sent them away. I remembered one of my clients, who had downs syndrome, had been dropped off on the doorsteps of a state school when she was a week old. She lived there for most of her life until the 70’s when big reforms took place regarding the care of disabled people. I remembered hearing the horror stories of group showers and sexual assault and physical beatings. Although their lives were significantly better now that they were living in group homes, they would forever carry both physical and mental scars from their previous lives. I started thinking about what would happen if Karl became too much for me to handle. What would I do? I could never bear the guilt of placing him in a group home, because regardless of how good the place was, no one could take care of my child better than I could. I spent so much wasted energy on these thoughts over the next few months. I started to realize that I needed to be with my son more, with both my sons. Now that Karl had been diagnosed, my husband and I were all about helping Karl get what he needed. I missed a lot of work, taking him to appointments and for evaluations. My job was less than understanding. There came a point where I had to look for another job, one that would allow me time with my boys, but understood what I was going through with Karl without feeling pity for him.

I thought long and hard about where to go next. We could not afford to live on my husband’s salary alone. He was a head custodian of an elementary school. It was a good job, and he had been there many years, but it did not pay nearly enough for us to survive. In my travels with Karl, I had come across one particular company as an excellent resource for kids with autism. They had a school in the neighboring town as well as several group homes for children. While checking out their website I noticed an area labeled “career opportunities”. I finally decided to look into going back to my own field. I wanted a career again; I was tired of just having a job. I applied for the position of house manager for a group home of autistic girls, and three weeks later I was hired. I was excited, not only to get back to what I loved, but to learn more about what my son would be living with for the rest of his life, and what I needed to do to help him.

As the boys started getting older, it became obvious to DJ that his brother was different than most other kids he knew. He did not understand why Karl liked to play by himself when there were a bunch of kids around. He didn’t understand why Karl watched the same videos over and over again without getting bored. Mostly, he didn’t understand why Karl hit him all the time. Basically, DJ thought Karl was weird. The boys played together often, but the same repetitive games that Karl so loved, bored DJ. The many wrestling games they would play usually ended in my older son in tears, and my younger standing they’re looking at him with no expression. When DJ had anything in his hands, be it food or a toy, Karl would snatch it away from him and hit him with it. In my wisdom as an inexperienced mother, my initial response was “Hit him back, eventually he will learn.” (My mother is now cringing in disbelief) What we learned from this lesson was that Karl has an insanely high pain tolerance. If DJ hit him back, he would attack like a wolverine until DJ was curled up and crying on the floor. I became fearful for the safety of my older and bigger son, so we went back to the Neurologist.

I had become accustomed to my new job, and I loved being with the students and learning from them and their families. Up until this point I had secretly thought in my head that I would never put my child on medication. Medication was left for parents who didn’t have the experience I had. I firmly believed that with the proper teaching and training and structure my son would soon be the pillar of his preschool class. Things didn’t quite work out that way, and when we went back to the Neurologist that first time, I was thinking that if he suggested a shot of Whiskey and an Ativan three times a day I would have blindly obeyed. Karl had given up sleeping all together, and his aggression was growing more and more severe each day.

We tried a multitude of medication. We settled on something to make him sleep, and something to attempt to help his impulse control. The sleeping medication we give him twice, once at 8pm and once between 2 and 3am. It wears off after six hours. We learned this after many a night of repetitive requests for videos at 2am. And yes, we leave the TV on all night. Although some may think that this is the root of all that is evil, those people do not have autistic children who can function on almost no sleep. If we do not have the television on at 2am, Karl will attempt to wrestle with his brother (while he is sleeping I might add) and poke my husband and myself until we relent and make him peanut butter toast and juice and then go for a walk to feed the ducks. In translation, if we do not leave the television on, all four of us are up all night. And although Karl can function just fine on half hours sleep a night, I cannot. So please do not judge me until you have walked a mile in my shoes so to speak.

Karl’s education has been an ongoing struggle. We started with early intervention. They agreed wholeheartedly that Karl needed help. Unfortunately for us, Karl was too close to his third birthday, which placed him smack dab in the middle of public education. Karl started preschool in a fully integrated classroom. It became painfully clear that this was not the place for him when he continued to isolate himself and started to physically attack the other children. It was agreed that we would transfer him to a substantially separate classroom. This entailed a twenty-minute bus ride to a special class with only six children in it. Because here was one teacher and two fulltime aides, Karl got a tremendous amount of one to one attention. He slowly began to come out of his shell, and attempt to have contact with the other children. He came home each day talking of his playmates and their adventures together.

After less than a year at this special school, I fell ill and was out of work for months. We fell on financial hardship and we were forced to sell our home. This meant transferring Karl to another school district and another school. He was excited at first; at least he seemed to be. The new school felt it wise to attempt Karl in a full time fully integrated class again. After one full school year, inundated with restraints and constant battles with teachers and principals, Karl was transferred back to a substantially separate classroom.

Karl is doing better. He goes to school all day five days a week. I have daily communication with his teacher, who tells me what kind of day he had. I can’t remember the last time he had a full day with no aggressions at all. He has graduated from hitting, kicking and biting his teachers, to hitting kicking and biting the other children. I have begged for the school to release him to the special school through my employer, but because they would have to pay for it, they have been most uncooperative. I spend each day researching and looking for ways to help him. It’s exhausting, but I will never stop. I love him, and someone needs to look out for him, and no one can do it better than I can.