Deep down I knew all along that there was something wrong. Something different about her. Kat was our second child. When she was born, her 3 year old sister Bridget was a very bright, very outgoing happy child. What have we done right with Bridget? What did we do to Kat?
My pregnancy with Kat was different than with my first born. I was nauseated for the first 7 months. Three months into the pregnancy one of the tests (alphaphetaprotein) was low. We were pressured by the hospital to do amniosynthesis, but the odds they presented did not make a happy picture either way since she could have been aborted in the process. We chose not to know and when she was born, everything was fine. We were relieved completely. She walked at 10 months but was not talking.
We probably could have discovered Kat’s autism at a much earlier age but no one we knew or the pediatricians could tell us. We all thought that she was different and would outgrow whatever she might have. “Some kids don’t talk until they are six” we would hear from supportive friends and relatives.
I remember when Kat was about 11 months my mom was trying to convince me of a problem with her hearing. “She can’t hear, that’s her problem and that’s why she’s not talking.”- my mom insisted. I walked over to the TV, Kat was in our sunken living room about 20 feet away. I picked out one of her favorite video’s “Sword in the Stone” and put it the VCR very quietly. I lowered the volume of TV so that we could barely hear it and played the video. Kat arrived in the family room promptly and plopped herself in front of the TV without looking at any of us in the room.
Kat did not respond to her name, did not look at us to communicate. She sort of looked through us as if we were a dark cloud that affected her view. She dispised clothes especially hats or anything confining. If we wanted to take her for a walk in the winter the screaming would start as soon as the hat went on and continued throughout the walk until she got back. As soon as the hat came off the screaming stopped.
Socks came off along with the shoes as soon as she would get home. Her disgust for clothing would result in complete strip at times if we did not have our eye on her for few moments. She ate trash, sand, hair whatever she found within reach. She could spot it from quite a distance. She lined things up and could play for hours with this little train filled with soldiers. The soldiers would come off and get lined up and go back on the train, and again off, line up, and so on… for hours.
The sad part was that we did not hear laughter from her and she smiled only when her favorite video part came on. Although she did have few words she could say sometimes her best tool for communication was screaming continuously until she got her way. All these signs probably would have been recognized much sooner if we knew about autism.
I was well on a career path. A mechanical engineer got my masters in management when Kat was about 1 year old. We had a live-in sitter who was great with the girls. Bridget adored her. She had to leave when Kat was 1 so we decided to put Kat in a day school so that she could be with other kids her age. We thought that maybe being at home with one adult was not stimulating enough. We thought we would try the same place that Bridget went to.
We explained to them that Bridget and I would come with Kat to help her out at first. I took a day off work. I tried different classes but even with me there, there was no way Kat could stay. She had no interest in the activities. No matter what I tried to get her to do she would scream, she was fine if I left her alone but the kids had to do something and follow the class schedule. I remember the circle time and show and tell, Kat would have no part of it especially trying to sit her still for fifteen minutes. After she realized what my intentions were screaming started again.
The outside activities were dangerous for her. She just walked wherever she pleased looking somewhere but not seeing. She could walk right under a swing and get hit, she would not hear commands to stop or watch out. I had to leave embarrassed but realizing that this would not work. I justified it that “ well maybe Kat is not as smart as Bridget and this was a school for bright kids, so we’d try something where kids were more average”.
We tried another daycare that had more structured activities. Kat did not participate but they did not seem to mind as much. Their only requirement was that she would be toilet trained and amaizingly enough Kat was at age 1 and a half. Few months later one of the classroom aids took me to a classroom for a private conversation. I still remember the room and the furniture in an empty classroom filled with activities that Kat would never touch. The aid informed me that Kat was found stripped in the playground sitting on the ground and eating mouthfuls of sand. Thoughts were running through my head "how could this have happened?' The woman sat across from me on the little daycare stools trying to explain to me about her friend who had manic depression. She was in the ball park but had the wrong game. I had no idea what manic depression was so after looking it up in a dictionary I dismissed it immediately. I was outraged that they were probably trying to cover up for lack of supervision to allow my child to strip and eat sand. I invited my aunt to come from Poland to help us out. She came but she was clueless with Kat as well even though she was a school teacher and raised two of her own children. Since my aunt used to teach Polish we thought it would be great for the girls to be bi-lingual and she could teach Kat things. Bridget was picking it up fast, but Kat remained the same.
And life went on continuing in our little fantasy land thinking that Kat was just unique and stubborn and would do things her way. So what that she does not talk, or look at us. So what that she’ll take her shoes off. So what that she gives you the back of her shoulder/elbow every time you approach her to try and give her a hug. She could take her socks and shoes off quite skillfully and run on her toes (what a great achievement!). She could walk straight across the edge of the couch, what balance!
Until Bam! One day Kat broke her leg, but with her level of energy and activity what could you expect. Among the screams from either pain or frustration of the two of us holding her the Doctor recommended “ The cast will be on for 6 weeks, she has to keep her weight off her leg for the first week.” The Doctor was clueless as to what an astonishing task he was recommending.
Kat could not be held down, she was so active, she hated any restriction for a couple of minutes, a whole week...! We finally figured out an ingenious way to keep her of her feet. Since she did not usually cry in the car seat. We brought it inside and placed her in it surrounding her with her favorite toys. We played lot’s of her favorite videos. With any attempt to hold her on our lap the screaming would start and not stop until she was back in the car seat.
The next event I remember today as if it just happened, as if it was played in slow motion. I heard someone yell “Come here quick, where did she get this hair?” I ran in slow motion to the living room and looked at Kat. There she was, sitting in her car seat as if nothing happened with a handful of hair and I had some of it in her mouth. A panic look around the room where did she get it from and then realization hit as I saw a huge bald spot on the side of her head.
I grabbed the hair out of her hand and yelled at her No! I don’t remember her reaction all could see was the huge bald spot, size of a fist, on the side of her little blond head. I had visions of permanent damage and what it would do to her stomach. We tried to stop her, but she was so skillful in running her plump little fingers grabbing a handful and putting it in her mouth. After many tears (mine and hers)and yelling I took my scissors and cut all her hair off! That stopped it the hair pulling, but in front of me was left a vision of my little girl, who looked like she came out of a concentration camp, bound in her car seat with a broken leg. After a while we got used to her look and the hair started to grow back. Once out of the car seat she was just as active with the broken leg as she was before. But the bald spot kept flashing in my mind like a traffic signal on and off telling me that something was very, very wrong.
I spoke to the pediatrician in our next visit, holding back the tears. She asked a few questions about Kat’s development. “Does she talk?” – “A few words”; “Does she play with toys?-“Only few of her favorite’s, but she loves to watch videos.” So the Doctor gave me a referral to an evaluation center. I called and got an appointment a few months later. But the thoughts that something might be very wrong was driving me crazy.
Danuta - Kat's Mom, December 2, 2006