Since my last post I have been wondering...where do I go from here? So much has happened in the last 16 years. There has been a lot of laughter and way too many tears. When I run into people that knew Emily in the beginning I am always met with surprise. It is hard for them to believe that the totally disconnected, non-verbal whirling dirvish they knew is the young lady that stands before them today. To really tell our story of Life With Emily it seems most prudent to start at the beginning.



I never understood that feeling of not wanting another baby. I was 38 when Ben was born. I had been in preterm labor, on bedrest for 4 months and, in the end, almost lost him in delivery and yet I still didn't have that feeling that this should be my last baby. Then came that fateful day I found myself standing in my bathroom staring at "the stick". I was on the phone with my youngest sister, Mandy, who was struggling with reproductive issues of her own, when it turned that pale blue that proclaimed another baby was on the way. As the reality started to set in I became numb and, at that moment, I knew "the" feeling. Well...it was done. Nothing to do now but adjust and figure out how I was going to tell my husband, Larry. Ben was a placid not yet 1 year old, Jeff was an independent, athletic 12 year old and Dan an active, rebellious, musically talented, and as yet undiagnosed 14 year old with ADHD. Still, maybe this could work. I could do a few more years of soccer, baseball maybe another musician... yep, this could work. Larry was actually a bit thrilled....but we had no idea what joke life had just played on us.

I know there is the belief that autism is caused by vaccinations. I know other parents have said they had "perfectly normally developing children" until they turned 2 or 3. I am here to tell you that I knew this was not like the others when we went to do the amnio. Emily was a high risk pregnancy due to my "advanced maternal age" (funny, I didn't feel old), so an amniocentesis was recomended. We got started. Larry was there I was ready and my doctor was speechless. He had never seen anything like it! This baby was so active he could not take the amniotic sample for fear of causing injury to the baby. It was the strangest thing to watch the ultra sound monitor. This tiny being seemed to fly from one side to the other, up, down, side to side. It was dizzying to watch. We were sent home and told to come back the next week. Finally, after coming back for the third time, and at the last possible moment, the sample was taken. Success! Now to wait for the results. I need to tell you that the delay and drama really made us think. OK, so we get results. Then what? What would we do if the test came back abnormal? I had watched this baby on the ultra sound monitor. I could feel it move and I was definately showing by this time. There was a lot of soul searching and discussion between us in these weeks. In the end, however, there were no choices to be made. We were given the news that we were having a healthy, normal child! Joy of joys! Relief... and, did I tell you? It would be a girl! Hmmmm....excuse me? A girl? The idea of having a girl had never crossed my mind. After three boys I really thought that was the only flavor babies came in for me. What on earth was I going to do with a girl? I knew everything there was to know about soccer, baseball, worms, burping contests, dirty socks and every other gross, disgusting thing boys do. At this stage in my life could I do an about face and get into Barbies and ballet and dresses and hair ribbons...... Dresses, hair ribbons......yep....I could do that! This would be so much more fun than tee shirts and sweatpants. There would be lunches and endless discussions about the happenings of her day and who was or was not her best friend at the moment. And then I started remembering all the wonderfully, special times I had had with my own mother and thought, this is going to be great! I now would have a wedding to plan.....hmmm..... maybe we would have it at the William Penn Inn..... Yes, I could get used to this idea. This was going to be just fine. In fact, this was going to be glorious!

The pregnancy went like most other pregnancies pretty uneventful with the exception of the fetal activity. Emily was so active that, especially in the last month or so, I could not get comfortable. In pain, and extremely sleep deprived, I could not wait for this to be over. Because of my "advanced maternal age" and the complications of Ben's delivery, I went for non-stress tests every week for the last 6 weeks. Every week I would go in and plead with my doctor to induce labor and release me from this agony. Every week he would laugh. Emily, the stinker, was born on her due date. My only girl and my only full term baby. Emily was also my heaviest baby at 8 lbs 0 oz. (The big boys called her "Fat Girl" as an infant and toddler and, although I chastised them each and every time, the name seemed appropriate at the time.) She slept very little, cried constantly and was anything but the very pleasant, docile baby that Ben had been. During her rare sleeping moments she was still in constant motion. Her leg would repeatedly kick the side of the bassinette causing it to rock and creak. I now knew exactly why I was so uncomfortable during the pregnancy. I noticed she did not react to us like the others had. When Emily nursed she never lingered to gaze into my eyes, smile or grab my finger in her little fist. She never wrapped her little arm around my back as if to give me a hug or snuggle into my chest to hear the beating of my heart. Emily nursed until she was full, went rigid and pulled away as if getting too close hurt. What had I done wrong? Between sobs I would tell my own mother thar the baby didn't like me...wasn't bonding. My mother, of course, comforted me and patiently explained I was simply exhausted and probably a bit baby blue. You have four children and just need some sleep. Take a nap while the babies nap, she said. The nap didn't help.


Life has a way of happening. Life with four children is busy and full. Emily grew. She loved her walker and would stand rigidly ,in it in front of the TV swaying back and forth waving her arms wildly at Barney and Sesame Street. She never really looked people in the eye, however, and you could not get her to respond to your smiles, coos and antics. The raucous laughter of being bounced on a knee, peek-a-boo, patty cake, these were games she would not play. When she was 10 months old she started to walk, although we thought it more like a "run- fall". She would move forward so fast, with her head leading the way, that gravity had to take over and she would fall into the corners of walls, tables, doors, etc. She was bruised and bleeding but would not go to us for comfort. Instead she would get up and run the other way often dripping blood along the way. Larry built a permenant gate for the family room creating a large play pen to keep Emily contained and safe. I learned where every drive through was as it was impossible to take her into a place of business without her throwing a tantrum when we left or did something unexpected. We knew she was active, and now we realize a bit different, but life was so full it never occurred to us that this might be something of import, something not quite like what other families with 15 month old toddlers go through. It never occurred to us until the flu came to visit.


My sister, Mandy, was living in Cincinnati at this time. She and her son, Andrew, came to stay with us on her way to visit friends in New York. She intended to stay one night before moving on. Well...she promptly came down with the flu and stayed for 1o days. One by one everyone me, Jeff, Ben, Emily, Mandy and Andrew came down with the flu. Only Larry and Dan were spared. Every morning Larry would stand at the front door looking at Mandy and me sitting, head in hand, trying to feign interest in getting one of the four infected children to eat or drink something, and wave "Good bye! Are you feeling any better?". I would grunt, wave back and go back to trying to survive the nightmare. It was at this time that it occurred to me and my sister that there was something not quite right with Emily. Emily was sick just like the rest of us yet she didn't whimper or look for comfort in any way. She simply either lay in her crib or sat in her high chair. I can still see her sitting in that high chair that morning with her legs and arms outstretched, rigid and shaking, her head moving wildly and eyes crossed. Mandy, head in hand and faint with fever, looked at me and said, "She looks like her head could spin completely around. You know, she looks just like the girl from the Exorcist." I looked at her in agreement and said, "I know what you mean. I would almost think she is autistic....." At that moment, sick as dogs, we looked at each other and the light went on. Suddenly everything was so clear. The way she sat mezmerized for what seemed to be hours ripping newspaper up over and over and over again. The maniacal running headlong into walls. The aversion to having her picture taken. The lack of desire to sit and snuggle. The way she would lie in her crib for hours, not sleeping, just lying there banging her leg against the wall. It all made perfect sense. Whether we knew it then or not, our lives changed forever at that moment.


It really wasn't really quite that simple. Nothing ever is. There were many trips to CHOP's (Children's Hospital of Philadelphia) neurology department. MRI's, rule outs from audiologist, opthomologists and evaluations by Occupational Therapists, Physical Therapists and Psychologists. In the end, we were given a diagnosis... PDD/NOS, Pervasive Developmental Disorder Not Otherwise Specified...and sent on our way headlong into the Early Intervention system and the search for answers. This is when our real journey began. It has been a long road. We tried many interventions hoping for the magic cure that never came. We watched for those precious developmental milestones that others took for granted as this beautiful toddler slipped deeper and deeper into a world she could not share with us. I kept a journal with a list of the words Emily knew....imagine being able to name all the words your 4 year old knew...and celebrating each and every one. There was deep hopelessness that finally ended in resignation and finding a way to make the situation work for us and our family.


Life really does have a way of happening, you know, whether we want it to or not. And in reality we had no other choice than to find the joys in the "little things". Slowly our worlds have merged. Emily has found a way to let us into hers, although to this day she does not understand why she needs to, and we have found ways of explaining ours to her. Our worlds are run by "rules" and "schedules" and other very concrete criteria. There is no gray in Emily's life. It is black or it is white. I often think it must be wonderful to never have doubt. We have laughed and, Lord knows, we have cried, but in the end, we have Emily, a beautiful, funny, mostly self sufficient 16 year old young lady. We wouldn't trade her for anything. She is our wonder and our treasure. And, after everything we have experienced thus far, I can honestly say, I am so thankful that I didn't have "that" feeling so many years ago and am happy we had this one, last baby.