Jonathan's World | Design By Cher | Autism Graphics |

I make no claims of being able to write (actually it is probably my weakest point), but several years ago I was compelled to share our journey, to help others who were traveling down this same path. Actually, it is more like a journey, one that started from the day Jon was born and will last our entire life. I have devoted my life to helping others and to share the experiences and knowledge I have gained on the way. I know if Jonathan could tell me, he would want me to be doing exactly that.

"What is wrong with Jonathan?"

There I was, sitting in a room  with a speech pathologist, pediatrician, child psychologist, and several other "specialists". We all sat in a huge circle. Jonathan was sitting in the middle of the room at a small table quietly spinning, upside down, his favorite red car.  “Why do we need all of these people in the room for this?” I thought to myself as everyone took a seat. Jon was 25 months old, I was 24.  I consider that day to be the last day of innocence for both of us, as after we left there that day, our lives forever changed.  This day was the end of a nine month long search for the answer of, “What is wrong with Jonathan?”

 The First Year

Jonathan was born on July 16th, 1993 in the early morning by c-section.   He was a perfectly healthy baby at 8lbs. 8oz and 21 inches long. I was in heaven.   I never thought I would become a mother, but there I was with this beautiful little boy.  I remember my mother sitting in my hospital bed holding Jon and saying while looking down at him, "there is something so special about you".  Little did I know then, how true those words would be.

Things went pretty good during Jonathan’s first year.   He met all of his first year milestones, was very affectionate…and had an infectious smile and giggle.  He was relatively easy to entertain and did not seem to mind other people holding him. I did have a huge problem with Jonathan not sleeping at night, and never seeming to be satisfied no matter how much he ate.  He did not start sleeping through the night until well over 9 months old, but, even then, he would only sleep about 4 or 6 hours, every other night.  Other mothers I spoke to told me this happens often, so not to worry, he will grow out of it. To this day, Jonathan still cannot sleep through the night on his own without medication.

Jonathan being my first and only child, I had nothing to compare to.  To me everything seemed to be developing fine and his pediatrician was in agreement - I always got glowing reports from his checkups. Over the years, I have learned how little training pediatricians or family doctors receive on developmental delays, or autism.  They simply are not equipped to identify these kinds of problems, especially in such a young child. If your child is still not speaking a word at 18 months, and your doctor says something like, "Boys are often slower than girls in speech, he will talk when he is ready", ...run.  Find yourself a new doctor or get a referral to a pediatric neurologist or even better, a pediatric developmental specialist. 

I remember family and friends commenting when Jonathan was only six months how he could turn you “off” so easily when he was done with you.  I looked at it as he was showing his independence and just knew what he wanted, I actually took pride in this.
I use to have a large mirror at the bottom of my steps. Every day when I would bring Jonathan down from his room, we would stop at the mirror. I would hold him in front of the mirror, and ask him "who is that baby?".  I was under the impression that babies liked mirrors.  Jonathan was not to impressed with that game, or his reflection.  I tried this game for about a year and finally gave up, as I saw no reaction from Jon.  I think he was about 7 years old before he found himself in the mirror.  I found him standing on the bathroom sink one day,  just looking.  Once in a while, you will catch him doing it, but rarely. I sometimes wonder if he looks in the mirror and remembers the little game I tried with him everyday for a year, desperate to see a reaction.

Jon had two loves as a baby, his swing and TV, specifically Disney videos and the game shows Wheel of Fortune and Jeopardy.   Now I know that lots of baby’s love swings and TV, but have you ever seen a six month old watch Wheel of Fortune or Jeopardy as if he was watching Mickey Mouse or Barney? Or have a baby that wanted to be in his swing most of the day, to watch TV, eat and sleep or else scream in discontent if you try to take him out? These activities were more than something Jon enjoyed,  these were obsessions.  I would often feel guilty about the time Jonathan would spend watching the TV or being in his swing, but more  frequently than not were the only things that made him happy.  Jonathan especially loved the Disney movie Fantasia. He would watch it  over and over never getting bored with it.  Before he was a year old, he would watch a movie from beginning to end including the credits without moving away once.  Turning the movie off before the end of the credits would result in a temper tantrum. Once again I had an excuse, “He has a great attention span for his age”.  Jon to this day, still loves Wheel of Fortune and Fantasia.

Concerns started to come up after Jonathan turned a year old. We still saw no sign of any language or imitation skills. No mama’s or dada’s came from him.  He did not point at things that he wanted. He had no way of communicating to me what he wanted or needed, except by crying. Looking back now, I am amazed how I learned the different screams and cries and what they meant for him. Most parents after the first year are using the beginning stages of speech with their child to identify needs, not me. 

Jon could be very stubborn on some things. (stubborn, obsessed, you pick)  I could not get him to even try drinking from a cup, play with other children or for that matter most of his toys. The few toys he did play with he really didn't play with he would just spin them in circles and carry around the same toy for days not even noticing any of his others.  If he did take up a new toy, all he would do is find a way to make it spin. I use to have to actually dust his toys off that stayed on the shelves, never being touched by him.  As far as other children went, it was more like tolerance of their presence rather than interaction with them.  Something else I finally realized after being around some other children the same age was that Jonathan never lifted his arms up to be picked up.  He liked to be picked up, but never offered his hands out to let me know that was what he wanted.

Physically,  Jonathan was developing as any normal child would.  After he turned a year old he did start to get ear infections every other month.  It seemed we were constantly in the doctors office for it.  I also started to notice that he did not respond to people all the time when they called his name.  Even if I was trying to get his attention with something he would enjoy, he just didn't seem to hear me.  I had started baby sitting some other children in my home, I thought it would be good for Jonathan to have some play mates around.  One day I had some balloons in the house for the kids, one of the balloons popped right behind Jonathan giving off a rather impressive boom. The other children all jumped and one even started to cry since it was so startling.  But not Jonathan, he did not so much as even flinch. It was if he never heard the balloon pop at all.  I was starting to get concerned but at the same time told myself that everything was all right and that I was being an over reactive first time mother since most of his behaviors could be explained away as being independent, creative, stubborn…..notice a theme here?

I felt that I was not getting anywhere with my current pediatrician’s office I was using so I decided to take Jonathan to another pediatrician.  I got the same song and dance I got at the last. “Boys are slower with speech, he will talk when he is ready, he is perfectly healthy…..”.   I accepted these answers for a time assuming that the doctors knew what they were talking about, thus reinforcing the "over reactive first time mother"  theory.

  Can He Hear Us??

I finally decided to take Jonathan to a family doctor. The first few visits went well, the only real problems we had were those recurrent ear infections that eventually required tubes in his ears.  I started to think that some of Jonathan’s problems stemmed from his ear infections and that maybe he could not hear very well.  I took him in to see the doctor and told him of my theory.  The doctor agreed with me and had me take him for a hearing test.  His feeling was, “I think you have a problem, let's rule out the possibility of deafness”.

I came home crying and in a panic. I was terrified my baby might be deaf. I wanted to confirm my fear, so when I got home that day I decided to do a little experiment of my own before I took him in for a hearing test. Remembering the reaction or lack of a reaction from Jonathan when that balloon popped, I blew up another balloon and quietly walked up behind Jonathan and popped it. Again he did not even flinch, he simply turned around after a few seconds and just calmly looked up at me with a smile. He sorta had a look on his face that said, "Hey Mom, whatcha doing standing behind me?".

At this point I was terrified that my son was deaf, so we marched off to get his hearing tested. They tested his hearing by sedating him and hooking him up to a monitor since he was to young to do a normal hearing test. To my surprise his hearing test came out crystal clear. This was to everyone’s relief, except mine.  All I could think to myself was….”If he is not deaf, then what is it?!”  I said nothing to anyone and joined in the celebration.

Our doctor was pleased with the hearing test results but once again agreed with me that further research should be done to figure out why Jonathan did not appear to hear and was still not muttering a word.  He recommended a speech and language evaluation.  Jonathan was now 20 months old.

Jonathan was vocal just not verbal.  He would make a wide array of noises that seemed to become more complicated and creative as he got older, but he never formed words or used any of his sounds to direct at an object or person. Also at this age he started spending more time in his room alone, away from the other children that I watched. He had no desire to spend any time with other children,  again he just tolerated them being around.  Whenever he wanted something he would not point at it, instead he would take my hand and put it on the item or point my hand towards it.   I thought this was great at first and that he would soon start to point on his own and verbally start to ask for what it was he wanted. I would repeat Momma, Dadda and many other beginning words to Jonathan everyday, all day.  I thought this was how you got a child to speak. I really started to feel like a failure as a mother. I couldn't even get my child to call me "Momma".  I didn't realize that he should have started on his own.

Off again for more testing, this time it was for the speech and language evaluation.  It was difficult for the speech pathologist to test for anything since he had no speech at all. She could not even get Jonathan to follow simple one step directions like “put block in cup”.  It took her almost a dozen trials of her physically showing Jonathan how to accomplish this task.   He finally did it once.  The speech pathologist suggested that she refer us to a state run agency that could do a more universal evaluation.  I left there feeling more confused than ever.  I had no idea what a universal evaluation was and was intimidated by the thought of a state run agency doing it.

The rest of June, July and most of August went by as well as my son’s second birthday before I found out what a universal evaluation was and what the state agency was going to do for us.

  Finally Some Answers

August 21st, 1995

So there I was sitting in this room full of strange people taking notes on their little clipboards. Jon was in the middle of the circle, still spinning his red race car.  Everyone took a turn doing one thing or another with Jonathan.  For the most part he seemed unaware or unimpressed with everyone and their attempts to evaluate him.  After everyone was done, they wanted to know if I would come back in a few days to tell me what their findings where. I immediately spoke up and told the group I was not going anywhere until somebody gave me a straight answer.  I had been from one doctor to another and from one test to another and I was not in the mood to wait any longer.  Everyone looked around the room rather shocked at my statement.  The group leader turned to the child psychologist and asked him what he felt the problem was.  His response was, “Well I hate to drop the bomb on you with all these folks in the room, but I believe it is Autism”.  Then as if a secret signal had been given and without a further word of discussion from the group, everyone got up from their seats and left the room with the exception of the child psychologist and our  Birth to 3 coordinator.  Apparently it was obvious to them what the problem was.  There was not one person in that room who argued or disagreed with the child psychologist.

After that all I felt like everything and everybody just seemed to be moving further and further away to where I couldn't reach or even hear them.  I remembering thinking to myself, “Autism? I am not sure what that is, but I know it's not good. Isn't that what the movie Rain Man was about??”.    The rest of our visit that day is fuzzy to me, I do remember being introduced to a parent from the Delaware Autism Program and that he answered a lot of my questions about autism, but what was actually said escapes me.

We were referred to the Delaware Autism Program (DAP).  The DAP told me that they would need to evaluate Jonathan to see if they would except him into their program.  Jonathan was now 26 months old.

On September 19th we went to the DAP for his evaluation.  With the exception of a short video taping of me with Jonathan I was not allowed in the room for his evaluation, instead I was given a tour of the school, I suppose to keep us busy.   After about an hour  they were done and I was told to come back in a few days and they would let us know the results of their evaluation.   I thought to myself, “Not again!  Why does everyone like to send you away for a few days of more waiting and torture?”.  Once again I spoke up and told the team that I would appreciate being told what their opinion was before I left that day.  They told me they felt that they could help Jonathan and wanted to schedule an appointment to meet with the school and members of the school district.  They wanted to start him in school by September 28th, so we made the appointment for September 27th, my birthday.

  Taking Shelter

I had suddenly gone from being a full time mom at home, to the parent of a special needs child going to school full time. I had a strong belief in staying home with my child until he was of school age. Never did I imagine I would be putting my 2-year-old on a bus, in diapers, with a pacifier. I had to trust other people, in a new and very strange world with the most precious thing in my life.
I was numb with pain, but knew I had to let go, for Jonathan. 

All went well and Jonathan started school the last week of September. The full impact of what had happened over the past nine months had not yet totally hit me.  I was going on auto-pilot just long enough to get my son the help he needed.  On the third day of school I took Jonathan in and dropped him off at his classroom, spoke to his teacher for a few minutes then went back out into the hallway to leave.  It was difficult leaving him because as soon as I would try to leave he would start to cry and scream.  As soon as I got out into the hallway I began to look around at my surroundings and started to cry.  I kept telling myself that I had to stop this silly nonsense and get on my way, but I couldn't.  I just kept crying until someone in the hallway found me. They took me to another office and had Jonathan’s school child psychologist come in to see me.  I guess all the months of fighting to find out what was wrong with Jonathan finally caught up with me right there and then. It felt like a ton of bricks just got dropped on my head. While it was a huge relief to finally know what the problem was, it was at the same time devastating to me and I felt so alone.

I think that all to often much attention is given to the child during the diagnosis process (as it should be) but very little attention is given to the parents and what they go through during what is to them, a time of crisis.  The success of the child hinges on the success of the parents and their ability to cope with this major life changing moment.  My first year after Jonathan’s diagnosis I became very depressed.  It took me a good year after hearing the word “Autism” for the first time, to come back out of my shell.   I wanted little to do with my friends, family and nothing to do with support groups. It was all very intimidating to me.  I was grieving the loss of a child I thought I had and trying desperately to understand the one that I actually did have.   It seemed like the end of the world to me then, I later found out…it wasn't.

It dawned on me that I still had the same sweet, adorable and loving child that I had the day before he was diagnosed, I simply had what I was looking for, the answer to “What is wrong with Jonathan?”.  He WAS still the same child as he was the day before he was diagnosed, and I had to keep that in perspective.  I now know we were very lucky to get a diagnosis at such an early age, early intervention is so important with a developmental disability such as Autism. Because I would not give up and kept looking for answers I got him diagnosed early.  As soon as he was diagnosed he started going to the DAP and that was the very best thing that could have ever happened to him. 

I have learned many things since Jonathan was diagnosed. I have learned what patience really is, not to ever take anything for granted, and that Pop Tarts are one of the basic food groups.  I have also learned that a sense of humor is key in getting through the daily struggles that having an autistic child can provide.

Simple things that other parents took for granted everyday were small miracles for me.  I remember the very first time I ever saw Jonathan shake his head “yes”.  He was just about 4 at the time, I had asked him if he wanted chocolate milk, as I would every day and never actually expected him to answer.  He looked right at me and shook his head “yes”. I could feel the tears coming to my eyes, I knew they had been working on getting him to shake his head at school, but I had not yet seen it personally.  Something so simple that any other parent would not even have thought twice about made me so happy, it was almost as if I got back just a little piece of what was taken away from me.

 What is Jonathan doing now?

Jonathan is now 10 years old.  He is still non-verbal (cannot talk), and has limited receptive language, (what he understands).  We are still working on the potty training, during the day he is fine,  but night time remains a problem and most likely will for some time. *Update: Jon is officially potty trained! No more night time diapers!* Shortly before Jon turned 4 years old he started to develop SIB, (Self Injurious Behaviors). It started out with just banging his head into hard objects such as doors, walls, floors etc., and could usually be identified as frustration or protest.  As Jon has gotten older his SIB has developed into a variety of forms and cannot always be identified as having a reason other than "He just does it".  His SIB comes out in head banging still, but also in punching himself in the head or other body parts, painting with his own blood from self inflicted wounds, kneeing himself in the face, throwing himself into walls, using his legs to hit himself in the head and hitting himself with his toys or whatever else might be handy at the time. 

Other behaviors include but are not limited to:  hitting, biting, crying, screaming, throwing himself to the floor, growling, throwing objects such as furniture and aggression towards other.  We have often seen in the past these all of these behaviors coming out at one time in a "Manic" state.  These episodes we so far have not been able to identify the cause of.  He can wake up suddenly in the middle of the night and just "go off".  This can last anywhere from a few minutes to the longest of over 17 hours non-stop.  Needless to say this makes for a rather exciting day.  Jonathan has also developed a repetitive body movement "thing".  It can take him 10 times to sit down and finally stay or walks forward 2 steps back one.  Its almost like he is stuck in a particular movement or action and keeps hitting the rewind button.  He seems to have a need to be constantly moving, at the very least one body part at all times.  He started on a medication called Celexa and that seems to help tone down the repetitive body movement, so now he sits with just one try.

In the past three years Jon has been on a variety of medications to try and help him with all of his issues so that we can work on improving his daily living skills and communication which is limited to PECS, (Picture Exchange Communication System).  He has been on Clonidine, Paxil, Prozac, Buspar, Risperdal and we are now trying Zyprexa and Celexa.  Problem with medications is sometimes they work, sometimes they don't, sometimes they work for a while then stop and sometimes they have side effects that are worse than the initial problem you were trying to help.  I have no desire to medicate my child, but with the severity of his behaviors it has become a necessity, one that torments me every time I have to give him yet another medication.  The medications are nothing more than a temporary Band-Aid.  I have taken him to see a variety of specialists over the past several years trying to find answers, but the overwhelming response is that they just "Don't Know".  This is incredibly frustrating and you feel very alone at times.  All of this has lead me down the path of realizing that MORE RESEARCH, MORE EDUCATION and MORE AWARENESS  is needed about autism to the medical establishment, educators,  and to the general public.  I still have hope that one day he will out grow many of these behaviors and be able to have a life that is productive in some fashion.

The only thing that has proven to have any long term benefits is a highly structured, low ratio class room setting using ABA/Behavior Modification and LOTS OF POSITIVE REINFORCEMENT.  They are the only things that have helped Jonathan gain any of the abilities that he has today.  Despite what all seems like doom and gloom Jonathan definitely has a lot of charming, loving and playful qualities that to this day makes him irresistible to almost anyone who comes in contact with him.  When he is doing well he loves to take walks, play in his pool, look through books and especially loves to horse play.  To completely describe Jonathan in all of his complexities is nearly impossible, he is a special little boy whom you must meet in person to truly appreciate, admire and wonder over. He truly is in "Jonathan's World",  a world I struggle with daily to understand and try to fit into.

 Some Words of Wisdom

My life now is full of teachers, nurses, child psychologists, speech pathologists, neurologists, developmental specialists, respite, and committees, which I some how keep finding myself getting volunteered for (smile).  I am an active member of our local ASA chapter, (Autism Society of America).  I now know that this autism thing was not the end of the world, but rather the start of one that is just different.   I feel blessed that because of my son’s autism I have met so many wonderful and dedicated people who have a great deal of enthusiasm, courage and respect for our children.

My advice to parents who are just getting a diagnosis, allow yourself to feel what it is you are feeling.  Don’t kid yourself in the beginning.   I do believe you need to go through that grieving process and don’t beat yourself up over it. You are allowed, you are only human.  Once you have given yourself some time, then get up and start taking this head on. There are going to be times that you feel like no matter what you do - your doing it wrong.  Eventually you do start to realize that you are making a difference in your child's life, it is just a different life than what you originally had in mind.  Get together with a group of people in a local ASA chapter or the school that your child is attending and meet some other parents.  It helps to know you are not alone…and trust me you are not.  With the latest numbers from the CDC stating that there is an accurance rate of 1 in every 250 children born with some form of autism, chances are good a  child like yours is right down the street.  That is a pretty scary number, considering that when Jon was diagnosed back in 1995, the rate was 1 in 10,000. Autism is now being considered an epidemic with the numbers that are being seen now. 

Autism is a lifestyle for the whole family

You are going to find yourself not only accepting a different life for your child, but you are going to have to readjust your life to meet those needs. It is difficult for many parents to find full time employment. Many of the families I know, have one parent home full time. For my son, there is no after school care facility that can handle the severe behaviors that Jon has. (Someone told me a nice name for that - Severe Reputations)  Jon will have off a week for Thanksgiving, almost 2 weeks for the Christmas Holidays, and about 4 weeks in the summer.  There are also various 4 day weekends with smaller holidays and teacher in service days.  I have yet to find a full-time employer who will not mind giving me off 2 months from work, even with no pay.  That does not leave much room for illness of any kind or doctor appointments. This becomes increasingly frustrating for me, as I watch so many of my friends in their 30's and 40's well settled in to nice careers and jobs with all of the benefits that goes with it.  I manage to work for the Autism Society of Delaware with the help of some in home aids for Jon and an incredibly flexible schedule, which is not the same any given week. I love my work, I know I am helping to make a difference not only for my child, but many others in the process.

There are also some social issues that I must deal with. Sometimes taking Jonathan out into public can be a great time for us all....and then sometimes..well not so great. It was a bit easier when Jon was younger.  If we were out at a store and he decided to have a tantrum, I just simply picked him up and left.  Jon is now 4' 9" and weighs about 90 pounds.  He is not so easy to pick up and carry out if he decides to have a tantrum like a 2-year-old in the middle of Walmart.  He will scream, which scares the poo out of everyone within a 100 feet, growl, and throw himself on the floor contorting and throwing his legs up in the air in protest over not being aloud to go down the video isle. 

There is also the problem of visiting other friends and families.  All of our doors at home are locked at all times, since Jon has been known to escape from the house.  If he got lost, he has no understanding of any danger and cannot talk, so cannot tell anyone who he is, where he lives or who to call.  When we go to other homes, there is always the problem of their doors being open and other children coming and going from the home. Jon wanders non-stop...so it is hard for you to sit and enjoy a visit, as you spend most of your time trying to find where Jonathan has wandered off to.  This over the years, has really kept me from going out to many other homes unless they are very close friends who are willing to "lock down" when Jon arrives.

Jon needs someone 1 on 1 most of the time.  This becomes incredibly difficult, especially if you have a second child, which I do. Jarod, who is 5 years younger than Jon, but has now assumed the roll of Older Brother. I do worry about the affect this will have on Jarod as he gets older with friends, sports, school, everything.  I try very hard to make sure Jon's condition does not interfere with his life the best I can.  Jarod also only sees Jon being treated as an equal.  I think this is of most importance. Jarod needs to know that Jon is just as important as anyone else.

You do learn to adjust, some things I have accepted, some I still struggle with. I just try to keep it in perspective when I am struggling and remind myself that Jonathan is struggling with so much more every day.

It has been over 8 years now since I first found out that my son was autistic. The time has gone by so quickly and I have learned so much. I give credit to early intervention for his progress to date, the people that work with him are incredible.  Things need to be better for our special children.  Many of the parents I know are limited in what they can do in their life with such a child, but we seem to not have any limits on love for our children, or the spirit we have to fight for them. We do not want pity, we want understanding and respect and a future for our children.   I continue to  learn and grow with my son in a way that I hope will benefit him and others.

~Cheryl Kelley

Parent in Training

Page last updated: 12/02/03

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