I remember the day my precious
little boy was diagnosed with autism. Portions of that day have faded but much
of it runs in a loop I can play in my mind over and over. I remember the phone
call I placed that morning, in a panic, asking if I could get “right in” to see
the pediatrician I trusted. I remember the receptionist asking me what symptoms
my child was having and I remember telling her my suspicions. I remember the
difficulty I had putting those words together and speaking them out loud. I
remember her telling me that I could bring him in almost immediately. I
remember picking my little boy up and putting him in his car seat, handing him
his cloth diaper to hold; and I remember driving the thirty minutes to our
appointment time. I prayed the whole way that I was wrong; that what I had
found on the Internet during the night was not what Tate would be diagnosed
with.
Autism: it had been in the
back of my mind for months but I had not seriously considered it. I had not
said the word autism and meant it before that; but after putting Tate to bed
the evening before, and lying next to him, I had been forced to face the
reality that something was wrong. Something was not just “a little off” but
something was REALLY terribly wrong. I remember lying next to Tate. He was
whispering to someone or something that only he could see. His words were not
really words anymore but gibberish. He seemed to know what he was saying but no
one else did and it did not matter to him. What had happened to all the
language he used to have? Why didn’t he talk to me anymore? What language was
he speaking and whom was he speaking to? Where had my little boy gone? I
remember getting up out of the bed. I remember that Shawn was snoring. I
remember going into the study and googling “mental illness in children.”. After
hearing the strange language and the whispering he seemed to be doing to
invisible beings, I was sure my little boy must have a mental illness. I
remember the hard-backed chair I was sitting in at the desk. I remember typing
in the symptoms I had been noting and the things I had been questioning in the
weeks leading up to that night. I remember when the word “autism” came upon the
screen. I remember taking a test and scoring Tate, afraid to read the results.
I remember the first time I ever saw “PDD-NOS” and learned that there were
different kinds of autism. I remember running to the bathroom to be sick, tears
running down my face. I remember waking Shawn and asking him to come and read
the things I had found. I remember Shawn reading, looking at the test I had
found and calmly telling me he thought I had just accurately diagnosed Tate. I
remember Shawn eventually going back to bed and I remember sitting at the
computer the rest of the night shivering, reading, and crying, wondering and
worrying.
Our appointment with the
pediatrician was set for 11:00. I remember. I had called at 9:00 and the sympathetic
girl on the other end of the line had told me to be there at 11:00. I don’t
know what I would have done if they had put me off for a day or two. I remember
thinking that over and over, “Thank goodness they let me come right away.” I
remember sitting in the waiting room. There is a waiting area for well patients
and a separate waiting area for the patients who are sick. We waited on the well
side and I wished we were only there
for an ear infection or a cough. Normally, I hated sitting on the “sick side”
amongst the germs. I would have given anything to switch sides that day. I
remember the nurse who called us back and I remember sitting in the patient
room. I remember which room, in the maze of rooms in that practice, we
used that day. Tate sat on the carpeted floor. There were some neat trucks
in the room that my other children had often played with. Tate ignored them.
His cloth diaper was much more interesting to him. I had brought Tate’s three
favorite things with us. I wanted the doctor to see them. He had a cloth
diaper, a small set of beads on a blue wire that twisted and turned, and a
hardback novel about two inches thick. I cannot remember the name of the book
but I believe it had a green cloth cover. Tate could not read it of course, but
he loved that book. He would sit with it on his lap and fan the pages of that
book for 20 to 30 minutes at a time.
I remember the doctor
coming into the room. The door of the room was one that slid on rails instead
of opening on hinges. Dr. Loveland, he always called himself “Dr. Chuck” when
he spoke to the kids, asked me why I had come. I said, “I think there is
something wrong with my baby” and I began to cry. Dr. Loveland handed me a
tissue and stood next to me and watched Tate “play.” We watched as Tate tossed
his cloth diaper into the air over and over, watching it drop. Tate did not
look up and acknowledge the doctor or notice that I was crying. He just tossed
that diaper up in the air and watched it fall. I told the doctor that it was
Tate’s favorite activity. Dr. Loveland asked, “What do you think?” and I said,
“I think he has autism.” Dr. Loveland’s exact words were, “I suspect you are
right.” I remember them clearly. He stood and watched Tate and waited quietly
until I could talk and then he asked me what kinds of questions I had for him.
I remember asking, “What do I do?” and him promising me he would make sure I got
all the right phone numbers and contact information for people who could help
me. I remember him telling me that I would need to take Tate to a developmental
pediatrician for an official diagnosis. I remember asking him what our future
would be like and what would happen when Tate was grown. I do not remember his
exact words but I do remember that Dr. Loveland did not lie to me. He was very
compassionate when he told me that the future would be somewhat limited for
Tate. He told me that he had many teenaged and young adult patients with autism
and oftentimes parents had to hire help when they were older and their children
became adults.
I remember leaving that
appointment with a very heavy heart. But I also remember the phone ringing soon
after I got home and Dr. Loveland’s nurse making recommendations and giving me
phone numbers to call for information and services. I did not feel alone or
abandoned. I was not ever treated with anything except compassion and kindness.
So many parents with children diagnosed with autism have horrible stories to
tell about the way they were told their children have autism or how the doctor treated them. I have nothing but nice things to say about the
pediatrician and the people he referred me to.
It is possible that more
and more of that day all those years ago will fade from my memory as more time
passes. But, I somehow doubt that I will ever forget the compassionate doctor
who helped me take my first step into the world of autism. I am so glad it
was Dr. Loveland standing beside me that day. Dr. Loveland passed away recently and he will be missed. He was a great man and I am thankful he was in our life.
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This is a post called: What is Autism or Why Does Tate Act That Way? This is another post about our experience with a great practice of pediatricians: Why I Still Get the Recommended Immunizations
Autism was always in the back of my mind once my son was born. I didn't have much experience with children and babies but I had experience with mental and neurological disorders, so I knew what the signs were. Still, I remember a distinct and deep anger when his pediatrician suggested we have him screened. He was 18 months old and had failed his M-Chat. I was angry because he failed by one check mark and I felt that his fear of vacuum cleaners was "normal" for a toddler so why count that against him? I was in denial that it was a part of the collective group of signs. I left that appointment feeling...I don't even know how I felt, honestly, all I knew was that I had been given a set of tasks to accomplish before he was screened and I was convinced that by meeting those goals that some miraculous change would occur and we wouldn't even have to have him screened.
ReplyDeleteFast forward to a year and 3 months later. We are at Akron Children's Hospital for his official screening. As we go down the list of our son's "quirks", I'm stubbornly convinced that at most we're going to get a diagnosis of Sensory Processing Disorder, even though as we sit there, Lane is spinning in circles as he hums the same note over and over, using my hand to point at items he is curious about. And then, the doctor spoke those fateful words, "moderate autism". The sounds of the world faded and all I could hear was the rapid beating of my terrified heart. I felt a strange mix of despair and relief, and I didn't hear much of what the specialist said after the diagnosis. Thank God for the mounds of paperwork they gave us to familiarize ourselves with autism. Little did they know that I had spent night after night researching it, but I was still grateful for any help they could give us. The specialist did not give us any additional directions, as we were and are doing everything in our power to give him a "typical" existence. He is thriving now, he still doesn't really speak, but he communicates in his own way and he's taking steps out of his own little world to join us in ours. That may never fully happen but I am happy to wait with him in his world until it does.