Life, Loss and Emily

We have always wondered if Emily thinks of us when we are not with her. Does she miss us or is it more out of sight out of mind? When Emily was in pre-school Larry had a number of years when he travelled for work quite a bit. I would often tell Emily, “Daddy’s going to the airport.” I will never forget when we took her on her first trip on an airplane. She was so excited and shocked that when we got to the airport, got on a plane and actually went somewhere! All that time when she was told Larry was at the airport it never occurred to her that he actually went anywhere and it never occurred to us that she would think he would stay at the airport. I now wonder what she thought he was doing at the airport for days and weeks at a time…. But this is how her Autistic Spectrum Disordered brain works and remains a mystery to us.

Now that we are well into middle age and retirement is coming into view I have started again to wonder if she will miss us when she perhaps does not live with us any more or, heaven forbid, we should pass away. Will she live within her own mind and schedule and forget about us? Will she want to come visit us? Will she look forward to us visiting her? Anyone with a loved one on the Autistic spectrum knows this conundrum. Autism manifests differently in each person on the spectrum yet one thing is common to all and that is a lack of social connectedness. Emily has friends but feels no need to call, text or email them. She will text me if she has a personal need…..I love the “Mom. I need bread” texts….but we never get the “Hi, how are you doing?” phone calls or the long winded, drama infested diatribes about who did what to whom that other parents of teenage girls hear as a part of everyday life. Once in a very great while Emily will suddenly hug me so fiercely I feel my bones will break but that is about all the emotion I, or anyone, gets from her.

We have, however, seen firsthand how Emily deals with death and realize that she does understand the finality of it. I also believe she feels sadness and loss in the passing of a loved one. She just does it in her own peculiar and quirky way. In the 13 months from February 2007 until March 2008 we lost both my parents to COPD and my best friend, Sherrie to complications of MS. Whereas at the time I thought Emily seemed to deal with events in a matter of fact way and often seemed to be removed, now that I have had some space and found a semblance of peace with my own loss, I can reflect and see that Emily in reality was very involved and engaged.
Emily is, as all people on the spectrum are, a very concrete thinker. The abstract is difficult for her hence she envisioned Larry living in the airport instead of getting on a plane and going somewhere. When my Mom passed we had a Memorial Service for family and friends in the town where they lived in South Carolina. After the Memorial Service my sister, Mandy, an abstract thinker, got everyone together to write notes to my Mom. She had everyone attach the notes to balloons after which we gathered in Mom’s driveway and released the balloons to heaven for my Mom to gather up so she could read all the secret messages. Emily enjoyed the activity…wrote her note…To Nana Love Emily…and sent her balloon to heaven. Everyone stood quietly and watched until the last balloon was out of sight not wanting to see that last balloon vanish from view. Emily, on the other hand, was done and announced it was time for dessert. What was a beautiful and thought provoking activity for everyone else was simply an art project for Emily and when it was done so was she.

The ashes were something else entirely, however. We wound up with the 3 urns of ashes displayed in our living room waiting for the frozen earth of the cemetery in the Berkshires my parents had chosen for their final resting place to thaw. (Yes, three urns. My father’s younger brother had been waiting in my parents’ family room for burial since 2005.) I actually found comfort in having them there and found myself going in to talk to my parents daily. Emily had her own daily routine as well. She admired the beautiful mahogany urns, read the plaques affixed to them and made comments about the ashes within the urns. I am sure, by the way she examined the urns, that she was probably trying to figure out how her Nana and Pop-Pop could fit into those small wooden boxes but none the less she knew they were there. It was in mid June when we all made the pilgrimage to that beautiful spot in the Berkshires to bury the urns in a plot adjacent to my Mom’s parents. We all gathered with our families as well as a handful of other relatives at the cemetery. It had been decided this should be very informal so we formed a circle; I said a few words about my parents and opened the floor up to anyone else who felt the need to speak. Imagine our surprise when Emily quickly and confidently stepped forward and spoke from the heart for a very long time. She spoke about her relationship with her grandparents, who they were and things she had done with them. She is no great orator but I will tell you that there was not a dry eye in the place. What a fitting tribute to my parents. She was a hard act to follow. But most importantly to us was that we now knew she got it. She loved her grandparents, could express that love and had a void in her life with their passing.

So…when we enter this next phase of our lives, retire and get Emily moved on to more “independent living” will she miss us? Yes, I think she will. She will probably not lose sleep wondering what we are doing like we will wonder what she is doing but she will enjoy seeing us. And when we join my parents and pass this life will my daughter feel loss…be sad….remember us? Yes. I am convinced she will relive events of her life with us in her mind. She will pace, and talk to herself and us and we will be in her heart forever.

The Spring Fling

I am standing here watching Emily "socialize" at the Spring Fling sponsored by our Intermediate Unit. (For those that are not in the special needs world, the Intermediate Unit is the entity that coordinates special needs education and programming for the school districts. Some children have needs that cannot be adequately met by individual school districts. These children are educated in IU classes with children from many different school districts with similar needs. Emily now receives job skill training through the IU but her education from our school district.) The IU also sponsors social events for special needs students as well as trainings and outreach for parents. The dance is a major social event complete with decorations, DJ, refreshments and teens dressed in all their finery. It should be like any teenage dance but it isn't. There are no groups of girls whispering and giggling about the things teenage girls find so important. There are no groups of boys shuffling their feet, hashing over the latest big game and wondering if that special girl will talk with him. These teens are physically mature but mentally and socially much younger children. Some are in formal wear and look awkward and out of place. The girls are unsteady in their high heeled shoes. They all appear to be having a good time although I get the distinct feeling some do not know what they are doing there and exactly what is expected of them.

Emily is one of the ones that is a little confused. At first she stands in the middle of the room alone. Eventually she starts dancing, alone. She does not approach anyone to form a group for social support. The teens that approach her are met with an aloofness that tells them "Move along. There will be no conversation here." And thankfully they do, without being offended, as if it is normal and to be expected. Then, without fanfare, Shreya appears and dances in Emily's general vicinity. Shreya is, by Emily's definition, Emily's best friend. She is a very high functioning autistic that has been in Emily's classes since 5^th grade. Although Shreya functions at a higher educational level and is a bit more communicative than Emily, she exhibits many of the same social behaviors and is equally as aloof. At the end of the song they embrace momentarily and mumble their Hellos and How are yous and go back to dancing the next song. They dance the night away, even the slow dances, each in their own thoughts. They had their pictures taken by the photographer, got snacks and punch and went back to the dance floor. Emily had a great time. I am sure Shreya did as well. The last song is played and the two best friends part company without a single Good bye or See you Monday. Melancholy sweeps over me.

I have not grieved over the life lost to us since Emily was very young. We have been very busy wending our way through the educational system, behavior modification plans, speech and occupational therapy and life. It is times like Saturday night, one of the highlights of Emily's year, that makes me think of what might have been once again. So…dance young lady. Dance, dance, dance until the exhaustion overwhelms you and the blisters make you limp. Revel in the night while I feel sadness in your joy.

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.

As I was spraying Lysol on my Blackberry this morning it occurred to me that maybe my life is not as mundane as other people's lives. We are not dare devils. We do not take exciting and exotic vacations. We do not play golf, run marathons, sky dive or have Rhodes Scholars. We are ordinary people... So why is it that my sister, Mandy, tells me daily that I need to write a book, keep a journal or even....guess what....write a blog? It is the Emily component in our lives that make life interesting. It is why I stand here spraying Lysol on my Blackberry and hope and pray it continues to work and the smell goes away.


Emily is our 16 year old daughter. She is ASD (Autistic Spectrum Disorder). For any of you that know someone with ASD you know that it is a spectrum disorder effecting each a little differently and to widely differing degrees. Emily is known as a high functioning autistic. It manifests in Emily primarily as a communication and social disorder. In a nutshell, Emily sees no need to communicate with others and the social niceties that seem to come naturally to most have needed to be very purposefully taught to Emily. Therefore, Emily really does see life through very different eyes than they rest of us. She is thrilled that Sponge Bob is having a birthday and we can watch 24 continuous hours of Sponge Bob Square Pants episodes. She is on a first name basis with people like Mario, Peach and Luigi. She knows everything there is to know about cremation and can name each and every president of the United States, tell you who their wives were, what number president they were and a little known tidbit about each. She does not, however, see the need to call girlfriends on the phone, tell us about her day in the minute detail that other teenage girls do, angst over whether someone is ignoring her or talking about her, worry about whether or not her outfit has the "right" label or even if it matches! She does not make "dates" with friends to go to the movies or mall. What she does have a maniacal need for her particular "routine". Emily "must" walk the treadmill for 1 hour a day. She "must"get up at 6AM every morning whether she has school or not, she "must" to to bed at exactly 9PM on weekdays and 10PM on weekends and the dogs get fed at precisely 6PM. When I tell you we lead regimented lives I mean regimented....and it is kept regimented by Emily's schedule. As she gets older her regimen is not as life altering for us as it used to be when she was younger but still.... Life is interesting.


But I transgress. I am sure you are wondering why I would be Lysoling my Blackberry. Yes, it has to do with Emily. Last night Larry and I decided to go out for Chinese food for dinner. Ben was off with friends after hustling fruits and vegetables all day at Jim and Ralph's so it would just be Larry, me and Emily. When we got to the restaurant we discovered it had just changed hands. The service was slow the food OK....we probably would not have opted to try it a second time. After being there for an hour and a half we finally were done with our meal and were waiting and waiting and waiting and, yes waiting for our leftovers to be wrapped up and a check so we could pay and get home. Suddenly Emily, who had been her usual "chatty"...yeah right...self throughout the meal...looked at me and said "My stomach hurts" and proceeded to hurl all over me and my Blackberry. Life with Emily. Now here is where the communication disorder comes in....you see when you live with Emily it is assumed you read minds. If she is not feeling well I should somehow know that through mental telepathy so there is no need to give warning.... We should KNOW she needs to leave immediately and get home. Even after 16 years I still have not been able to master that mental telepathy stuff.

Well....for any of you with children you know what kind of a mess we left behind.....at the table.....in the restroom..... and the restroom paper towel dispenser had maybe 4 paper towels in it.... We paid the bill, apologized, gave a larger tip than we would have especially considering the slow service, and paraded Emily out to the car apologizing to everyone and anyone as we went knowing that even if we had wanted to go back, we now could never show our faces at this restaurant again. I am imagining our pictures on the wall with captions "BANNED" or "RUN FOR YOUR LIFE". My husband is now regretting paying with a credit card as we are no longer anonymous.... Halfway home we looked at each other and started laughing uncontrollably at the thought of what people were thinking watching this horror show unfold. If they only knew....this is Life With Emily. And did I tell you? Yes...Emily reminded me this morning that we "forgot" our Chinese food...... So here I sit. Lysoling my Blackberry....praying it still works and I can get the smell out.