WHAT AUTISM HAS TAUGHT ME     I sat in the doctors office, waiting for her to return.  My mom sat next to me, and Jonathan was falling fast asleep on her lap.  It's 4pm, March 19, 2007.  We had just spent an hour talking about Jonathan, and all of his little quirks.  He lines up hotwheels cars, all facing the same direction, sorted by color.  He steps back and looks at them, so proud of himself.  He stares at fans for 20-30 minutes at a time.  If a sign is crooked, he must fix it.  Cans of soda are stacked two high, all facing the same direction, sorted by flavor.  He didn't talk until last summer, when he was 3½ years old.  He does not understand language.  He knows what words mean, but does not know how to use them.  He says, "Mommy will go in the kitchen!" when he is hungry.  His speech is clear as day, it just doesn't make sense to most people.  All of these things, and much more, I explaned to the Neurodevopemental Pediatrician.  This was it.  I had faught for the past 2 years to get a pediatrician to refer me to a specialist.  I finally had won the battle, and there I sat, in the Cleveland Clinic Children's Rehabilitation Hospital.  I was waiting to hear that it's all just in my head, and that there's nothing wrong at all.  I thought she would tell me that I was just not doing well enough as a mother.  I thought she would tell me that I hadn't read him enough books, or given him enough exposure to other children.       She walked back in, and sat down in her little round chair.  She asked, "Mrs. Gallup, what do you know about autism?"  I wasn't sure what the right answer to this question was.  I told her about the books I had read, or- more truthfully, just skimmed over.  She then pulled out some graphs and charts with numbers, lines, and dots.  She first showed me where a 'typical' boy at his age would be in developement.  Then she showed me where a child with severe, or low-functioning, autism would be on that chart.  Then, she showed me my son's little dots on the charts.  I went numb.  I went deaf.  I went speechless.  I sat there, staring at the highlighted dots representing my son.  They seemed to melt into the page, becoming a blur.  My throat went dry.  I was looking at the papers, but it wasn't sinking in.  I looked, but wasn't seeing.  I knew what she was trying to tell me, but it wasn't there in my mind.       She could see it in my face, as I nodded blankly to what she had to say.  She knew I wasn't getting it.  She then said, "It's autism."  She said other things afterwards, but I didn't hear it.  My heart sank.  I looked at Jonathan, sleeping peacefully, his little face pushed into my mom's shoulder.  I looked at my mother's face, trying to figure out what she was thinking.  She was listening to the doctor talking, and the doctor had turned her focus from me to her.  The doctor knew I couldn't hear a word she was saying.  I have no idea what she said.  I was deaf.  I was aware that she was saying something, but I couldn't hear her.  I sat there, with my heart pounding, my throat dry, trying to take it all in, but unable to.       The doctor placed a box of tissue on the exam table next to me.  I snapped out it.  I turned and looked at the tissue, wondering if she was expecting me to cry.  I couldn't cry.  I couldn't feel anything.  I suddenly felt lost, alone, scared, and confused.  'Overwhelmed' doesn't even begin to describe it.  She handed me a business card, and told me to call the social worker whose name was on the card.  She instructed me to make an apointment to see her again in three months, and also to make an apointment with the geneticist.  She handed me a few papers with information on autism, and walked out of the room.  That was it.  There was nothing more to say.       I helped my mom get Jonathan's coat on.  I couldn't look at her.  I just turned around and walked out of the door.  I strapped him into his booster seat, kissed him on his head as I always do, and closed the car door.  As soon as I got my own seatbelt on, I grabbed a cigarette.  I needed to relax.  I needed to process it all.  Two blocks from the hospital, my mom broke the silence.  "He isn't any different now than he was this morning."  She was right.  Except now, I have to change my plans that I had for him in the near future.  I had spent the last six months checking out preschools, and talking with other parents on the matter.  I had plans of sending him to St. Thomas More, the Catholic school which I attended as a child.  I was going to sign him up for tee-ball in the summer, figuring that he was just shy and that it would be a good way to coax him out of his shell.  I had chosen to ignore the hand flapping, the eyes looking as far as they could go to the side when people talk to him, the rocking, the sensitivity to texture, light, and sound.  I just looked at my mom.  What could I say?  She was right.  He was still my Jonathan.  He hadn't been handed a death sentence.  He wasn't diagnosed with cancer, or some other terminal illness.  It's autism, and he isn't going to die from it.  He will be fine.     We pulled up to a red light, and I could hear the people in the car next to us laughing and talking with each other.  I thought, "How DARE they smile and laugh!  How DARE they be happy at a time like this!  My son was just diagnosed with autism!!  Don't they know that the world will never be the same for me???"  I wanted to scream at them.  I wanted to smash my head into the steering wheel.  I wanted to yell at God.  Why MY son?  Why did it have to be HIM???  Did I do something wrong?  Did I cause this?  Did my husband cause this?  Who can I blame?  No one.  Not anyone, not God, not my husband, myself, or the doctors.  No one did anything to him, it's just who he is.       I held my composure until I got home.  I pulled in the driveway.  Rob was home from work already.  I sat there in the car.  I looked back at my sleeping angel in his booster seat.  I didn't know what to think.  Feel sorry for him?  Feel afraid for him?  What should I feel?  I got out of the car, and walked slowly to the other car door.  He didn't wake when I picked him up and carried him into the house.  I put him down on the couch with a pillow and his blanket so he could finish his nap.  Rob was sitting in his recliner, with his computer on his lap.  He didn't even say hello to me.  He only glanced up for a moment.  I stared at him, waiting for him to ask how it went with the doctor.  He said nothing.  He just continued to play RuneScape, not even caring about my presence.  I searched for the words to say.  Would he care?  What would he say?  What did I want him to say?       "It's autism."  And, with that, tears began pouring down my cheeks, and I couldn't control them.  My makeup that I had so carefully put on that morning was now under my eyes, black streaks of mascara going all the way to my chin.  I couldn't say another word.  He had heard me, but said nothing.  He just continued playing his computer game.  I wanted to take his computer and hit him with it.  Did he NOT just here what I had said???  HELLO???  Our son has AUTISM, and you're just sitting there??  Aren't you going to DO something about this???  But, what was there to do?  I don't know what I expected him to do or say, but it wasn't this.  I wanted him to hug me.  I wanted him to sit down with me on the couch and hold me.  I wanted SOMETHING.  ANYTHING!  I sat down, with tears in my eyes.  I began to tell him what the doctor had told me.  Special education classes, therapy, medication...  He didn't say anything.     Finally, after about an hour of silence, and tears still coming from my eyes, he looked up and said, "You act like he has cancer or something."  Was he right?  Was I over-reacting?  I didn't think I was.  I didn't say another word about it for the rest of the night.  He obviously didn't want to hear it anyway.  He loves his son, autism or no autism.  He was still the same little boy.  He was still Jonathan David, the son he had named when he was 13 years old.  He knew that his first son would have that name, and he loved him from the minute he saw the pregnancy test with it's 2 little pink lines.  He was his son.  And nothing in the world would ever make him stop loving him.  NOTHING.       After dinner, he had his bath, and it was time for bed.  Rob and Jonathan both fell asleep without a care in the world.  Even the cat slept peacefully.  I didn't.  I couldn't sleep.  My mind was racing.  I needed answers.  I felt lost.  I had spent the past 4 years trying to make the best decisions for him.  I had tried to protect him, and to help him grow.  The minute I found out i was pregnant, my life changed.  I had these dreams of this perfect baby, who would grow to be healthy, happy, and strong.  I never had imagined this.  It's always someone else's child- not mine.  Things like autism don't happen to people like me.  This happens to people who have the money, the resources, and the emotional stability to handle it.   Not me.  Not us.  Not to MY child.      I didn't really know what autism was.  I had seen the movie 'Rainman', I had seen the ribbon magnets with colorful puzzle pieces. I had heard of it.  But I really had no clue.  I began pouring over books and webpages.  I wanted to know what this was.  I knew that there wasn't a cure.  What was there to cure?  There wasn't a virus.  This wasn't an illness taking over his body.  This wasn't something that would go away with time.  There aren't any surgeries.  I knew that much at least.       I read the books, but they all contradicted each other.  One says it's from diet.  One says it's from vaccines.  Another said that it was genetic.  So many opinions.  Where do I start?  What am I looking for?  I didn't know where to begin or what to believe.  All I knew was that I had a little boy who couldn't communicate well, didn't like to be near people, was not potty trained at four years old, and had strange little ways of playing with toys.  What was there to do about that?  He is who he is.  What exactly am I trying to change here?  Why would I want to change him?  I love him, he's happy, he's sweet, and he is very well behaved.  Why on earth should I change that?     I finally took the books back to the library.  I hadn't finished reading them.  I was not in denial, I was simply accepting the fact that my little boy was different.  He is the light of my life, and the autism diagnosis changed nothing.  He is still my little man, with a heart of gold and a tendency to organize our home.  Nothing wrong with that!  I could use the extra help anyway, since my A.D.D. usually has me jumping from one thing to the next.  Then it hit me.  God gave him to me.  He is my special gift from God.  I needed him to help me to get my own life on track.  Before I had him, I could barely take care of a hamster.  I would forget to feed it, procrastinate about cleaning it's cage, although not on purpose.  I was late everywhere I went because I would get so off-track.  Then, along came this little baby who depended on me and needed me to do everything for him.  I went from a girl with A.D.D. to a hard working, fast-paced, never-forget-a-thing mom almost instantly.  He has changed me for the better.  Why should I change him?  Why mess with what God has made for me?     Having realized that my son is who he is, I changed my focus.  I still watch T.V. specials about autism.  I still perk up my ears when there's a new theory on the cause of autism.  I still take him to his specialist.  I still read up on the therapies which are shown to help autistic individuals function better in society.  I would love to know what caused this, but it's not the most important thing for me.  If I find out, great!  If not, it's no big deal.     I now focus on public awareness.  Sometimes, people ask what's wrong with him.  Most of the time, people just stare, afraid of being rude.  I see them staring, I know that they are curious.  I want to tell them, "He does not have a type of mental retardation, he is autistic."  Well, how do you say something like that?  How do you explain it?  I decided that I can let people read it for themselves.  I bought a shirt from a website dedicated to autism.  On the front, it just says 'AUTISM' with 3 colorful puzzle pieces on it.  On the back, it reads,  'A tantrum does not always mean naughty.  Quiet does not always mean shy.  AUTISM.  Would you know it if you saw it?'  I wear that shirt whenever we go to places such as the zoo, or the park.  I wear it to any place we go to where there will be alot of people.  I am not looking for sympathy by wearing this shirt.  I am simply spreading the message to the world that there is more to my son, and ALL of those individuals within the autism spectrum, than what you see on the outside.     My son has feelings.  He DOES show affection.  He is full of hugs and kisses, and happiness and laughter.  He cares about those he loves, and he has a love for animals.  His best friend is a cat, named Evil Bob.  He takes care of that cat, feeding him, brushing him, playing with him, and showing him love and giving him attention.  He does make eye contact with us.  In his world, only 4 people exist- daddy, mommy, grandma, and grandpa.  He makes eye contact with us, he hugs us, he kisses us, he shows concern when one of us is ill or in pain.  He isn't some zombie walking around without any awareness to what's going on.  He is a person, just like you and me.  He feels pain, sadness, fear, happiness, pride, sympathy...  The list goes on.       My son is incredibly smart, and when people ignorantly ask if he inherited it from my husband or myself, I simply answer, "Well, my husband likes to think he got it from him, but we both know it comes from me!"  I say this with a big smile, and show them how proud I am of him!  He taught HIMSELF all of his numbers, from 0 to 999.  Give him any 3 digit number, and he'll tell you what it is.  He taught HIMSELF his letters.  He will tell you at least 5 words that start with any letter that you give him (with the exception of 'X' and 'Z', of course!).  When he learns a new word, he quickly tries to figure out which letter it begins with.  He is also a problem solver.  He takes apart his toys, and can put them back together correctly- even the ones with small pieces.  He always has to know 'why' something works the way that it does.  He has to know 'how' it works.  He knows all of the makes and models of cars driven in the United States, with the exception of the rare cars.   At just 4 and a half years old, I'd say that's just plain INCREDIBLE!     He is my Jonathan.  He is sweet.  He is kind.  He is gentle.  He is loving.  He is fun.  He is happy. He is a good kid.  He is AUTISTIC.

Replies

deleted_user
deleted_user

This entry made my heart burst. He sounds like such a sweet, smart, and angelic little boy. Even though he has autism, that doesn\'t change the fact that he is your light and your joy and your everything. I know some days may be rough, but God never gives you anything you can\'t handle.
deleted_user
deleted_user

i actually burst into tears reading this! its so moving and inspirational. i hope the best for you and johnathan!

LYLAS!!(p.s. 1 of my friends is autistic so i have an idea on what its like)
deleted_user
deleted_user

That was beautiful and so are you. You are a fortunate soul who figured out through experience this sense of love we all have for our children. It is just your love has more nuance like French food or good literature. I envy that you are a connoisseur of love.