This Journey rightly belongs to my son. I Admire him for muddling through all the years of misdiagnosis and being unneccessarily medicated. He is a trooper if I have ever seen one. My son,Robert, is now 13 years old and suffers from PDD(Pervasive Developmental Disorder) / Aspergers Syndrome. The journey to the truth has been long , scary and at times heartbreaking. Walk with me now as I take you on a journey through his life.
Robert’s birth was pre-mature and pretty scary to boot. He made his triumphant debut into this world on a cold day in November, when in fact he was not due for another 8 weeks. I knew from the moment I laid eyes on him that he was going to be a strong child. I knew he would face whatever came his way and knock it down if it got in his way. So here he was this tiny bundle of joy weighing all of 4 pounds 1 ounce. Oh , he was a fighter alright. The doctors told me that there was only a 50/50 chance that he would live. I cried so much that day but I was determined that my son would make it. I sat with him all day , everyday. The Nurses had to kick me out of the hospital every night , only to know I would be back at 6 am sharp every day. He had his struggles and a few close calls but he did it. He pulled through. He dropped to 3 pounds 8 ounces and they were concerned for his heath but in little time and alot of love he got back to his birth weight and finally started eating on his own. When he was released from the hospital to go home he was only 4 pounds 1 ounce and was only eating 2cc’s every hour. He had a heart monitor and an apnea montior and we had a host of rules to follow to bring him home. There were some bumps in the road , of course, but for the next 2 years he did real well. He gained weight good , grew on his own growth curve and ate like a champ.
After 2 years of doing fairly good , given the circumstances, something happened. One night I put him to bed just like always and things were good. I was visiting with a friend of mine and Robert woke up screaming for no apparent reason. I tried everything , was he hungry , needed to be changed , hot , cold , uncomfortable , I tried everything and nothing helped. He just screamed and screamed for what seemed like hours. Finally I thought “There must be something seriously wrong” . He was flinging his body all over the room and nothing would soothe him. I called 911 and as I was calling them he took my telephone cord and wrapped it around his neck. I was so scared. The ambulance came and they checked him out , but could find nothing. Since they could find nothing they were not going to take him in to the hospital. I was on the verge of argueing with them when he stopped screaming , just like that. It was as if it never happened. We watched him for a few minutes, he toddled around the house like he always did and took himself to bed and went to sleep. The next morning he was as happy as lark, nothing seemed wrong at all.
I took him to the doctor and had him check Robert out and he found nothing out of the ordinary. We did a host of bloodwork and everything was normal. Our pediatrician referred us to a child psychiatrist. So began our journey through the psychiatric system. At age 2 Robert and I became part of a video study on behavior problems. He did well during the study and they seen no point in having him there when one day during the study it happened again.
He screamed and kicked and thrashed all about the room for I have no idea how long. Everything was suspended in time at that moment for me. I looked at the doctors , they looked at me and we all seemed to be in a general befuddled state. Just as suddenly as it started ,it stopped and off he went to playing like he was before. The doctors then came to the conclusion that my 2 year old was ADHD. ADHD? At 2 years old? I was perplexed to say the least. The doctors started him on a very small dose of Prozac. They said it was still being tested with children. That was the beginning of my making mistakes. It was definatly a mistake. Prozac made him go seemingly MAD. I called the doctor and told them I was through. We would not be back. And we never did go back.
We struggled through the next couple of years with continuing screaming fits and even worse behavior problems. At 4 years old we put him in a preschool daycare program. He had such severe behavior problems there that we were forever having to go and pick him up. It seemed that anything or nothing at all could spark these “fits”. One day the bahaviors reached an escalation point and he destroyed the day care center and hurt one of the staff members. My husband went to pick him up and he was still in the throws of a fit. So he put Robert in the backseat of the car and started off to home. Here they are driving down the road with Robert still in a fit when Robert opened the car door and attempted to jump out of the car at 60 MPH. I could not believe what my ears were hearing. At this point we had no choice but to admit him to a psychiatric hospital for children.
Robert was 4 years old and in a psychiatric facility for children. My heart was broken for him and whatever it was that had a hold on him. I was so scared for my son. The staff at the hospital put him through a battery of tests and , what do you know, they came back with ADHD. I did not believe it , I kept asking them about Autism and they kept saying no for one reason or another. No matter how much I disagreed the doctors were intent on ADHD and medication. And so my son went through the next few years with medication and an ADHD tagged to his name , like a disease. There were many hospitalations, many changes in medication and a few close calls with his health due to the medications. All the while I asked doctor after doctor about Autism and the answer was always a resounding NO.
From age 4 to about age 7 things pretty much remained the same. At age 7 Robert became a victim of sexual abuse at the hands of his father, whom was never a part of his life. All legalities aside this had and still has a huge effect on the next few years. Due to the severe nature of the abuse robert suffered numerous psychiatric ailments. The most prominent one being some sort of alternate personality. This personality took over when Robert had enough and couldn’t deal with things in his own mind. Due to this , Robert was given more diagnoses through the years. ADHD , ODD (Oppisitional Defiance Disorder) , Phsychotic Disorder , Pshitzophrenia , Conduct Disorder, Mood Disorder and Bi- Polar just to name a few. I argued with the doctors and hospitals but they were sure this was his problem. I was not.
Finally ,at the age of 12 and after almost 3 years with the same phsychiatrist and alot of research we were able to do away with all those phony diagnoses. It took time but after compiling 10 years worth of psychiatric history a DOCTOR came up with PDD / Aspergers Syndrome. Who would have thought it would take doctors 10 years to figure out what I already knew in the beginning. I can not help but think , would he be doing any better now if the doctors would have taken the time to properly diagnose him from day one?
Today Robert is doing pretty good. With the right medications and the right diagnosis we know what we are facing. Robert is 13 with the emotional and social age of about 7 or 8 years old. Somedays he finds it hard to cope with but most days he is happy. I can not even begin to describe how much weight has been lifted from my shoulders. I am confident that together , as a family, we can face PDD / Aspergers Syndrome and Robert can have a very successful life. He is a joy to have as a son , I would not change anything about him . I love him just as he is. He is a great kid who has had a hard life.
For those that don’t know what PDD / Aspergers Syndrome is I have included a couple of links that will explain it.