Tony Stories – Humorous Reflections of a Parent Raising a Son with Autism

By Julie Irene Tatro

I’m so happy as I’m sitting at the graduation ceremony, but then I make the mistake of looking over at my dad and he’s getting teary eyed.   I know he’s thinking that my mom should be here for this moment, but she passed away three years earlier.  Nobody loved a good Tony story more than my mom.  That’s when I lose it and the tears start to come and I cry and cry through the whole ceremony.  Of course, we are sitting in the second row, so the faculty is sitting directly in front of us. The principal, the superintendent, the teachers are all there.  I smile at them as the tears continue to stream down my face, slightly embarrassed, but I try to make the best of it. Even my daughter Tara, who is 15 and at the age where she thinks her mom is a total dork, tries to comfort me.  She puts her arm around me and smiles.  Tony is graduating today and we’re here to celebrate this wonderful boy.

I picture Tony at three years old, cherubic curly hair wearing his slick red rain coat with the little dog ears on top.  That was the day we took him to an “Autism” specialist at the urging of our pediatrician.  We were sure she would send us home saying there’s been a big mistake. You and your husband just suck at parenting, read the parenting books your family recommended and everything will be fine.  Tony ran around her office in his rain coat and refused to take it off during the evaluation.  Instead of giving us parenting books she told us he had autism and we both looked at each other in disbelief.  Yes, he wasn’t talking much and he was hard to handle in public, but this kid was reading books.  I never noticed he didn’t make eye contact with others since he did look at me.  Okay, I admit the spinning in circles got to be weird.  I am embarrassed that I wrote “likes to spin in circles” under favorite games in his baby book. We thought it was cute until a little light bulb went off….why does his cousin get dizzy after spinning around a couple times and Tony can keep spinning and spinning and spinning.  We left the office that day sad, worried, and anxious.  How are we going to teach this boy, what will his future be, how are we going to tell our families?  My mom kept saying “He’s going to be just fine, everything will be fine.”  I wanted to scream at her “This is not fine! Quit saying that.”, but then I realized that she was grieving and coping in the best way she knew how.  We all were.

Shelia, the autism specialist, told us to imagine that Tony was a stranger in a strange land and had no way to say he didn’t understand.  He was a visual learner so she urged us to write things down.  We started using a big easel at home to draw pictures of things to help him learn their names.  I remember walking around with him outside our home with flashcards.   I started to cry feeling panicky, was it more important that he learn the word “rock” or “flower”.  How would we ever do this?  When we would tell Tony we were going to grandma’s house he would just look at us with a blank stare.  We took a Polaroid photo of Grandma in front of her house.  Next time we showed Tony the photo and said “Grandma’s House”, he immediately ran and got his shoes on and headed out to the car.  After a week or so we just said “Grandma’s House” and he didn’t need the photo.  He had made the connection and figured out what our words meant.  It really was like a light bulb going off in his head or the Helen Keller at the well moment.  He got really excited and so did we.

Tony loves watching videos.  His aunt gives him a video of children’s bible stories.  Soon we get a note from his preschool teacher asking if Tony has been watching a lot of religious programming as he is preaching to the other children.  We immediately take the video away but the damage is done, he has memorized the whole thing.  One day we take Tony to the park, children are on the swings while their parents sit nearby.  All of a sudden Tony lifts both his arms over his head and in a loud voice says “Children, mend your wicked ways or the Lord God will punish you!”  We get several dirty looks from the other parents, as we grab our little preacher and walk away.  This becomes one of our all-time favorite Tony stories.

Tony is five and we are at Kindergarten round-up.  I am nervous as we are waiting in line with all the typical children.  I’m hoping Tony doesn’t run around, start spinning or throw a tantrum.  I should have asked if we could meet individually.  We are standing next to a mom with a darling little pigtailed girl who is patiently waiting in line and I think to myself “That is what I expected.  A perfect child who stands sweetly beside her mother.  I wonder if her mom knows how lucky she is.”  Tony starts looking around the school cafeteria and notices all the posters and starts to read them aloud. “Eat three to four servings of vegetables and fruit every day.”  The mother next to me looks anxious, “Are they supposed to be reading like that already?”; “No” I smile and say “He’s just special.”  Later the kindergarten teacher tells me that he is the only child in class using words like nocturnal and camouflage.  He learned this from hours watching National Geographic children’s videos.  He is also the only child who uses the word davenport for couch and bureau drawers instead of a dresser and refers to jail as the hoosegow.  This he picked up from old black and white cartoons.

In our first home, my husband George and I didn’t know our neighbors.  Since Tony didn’t play with other children we didn’t get to know their parents.  Tony started to have some stomach problems because he had a very limited diet.  He was sensitive to the textures and smells of different foods.  Occasionally we had to give him a suppository which was never a fun task.  One warm afternoon we had to give Tony one. When he realized what was about to happen, he ran screaming.   At the top of his lungs he’s yelling, “No, daddy, not the butt.  Not the butt again daddy!”  My husband looked at me in horror and I realize that all the windows are open and our neighbors are sitting out on their deck with shocked looks on their faces.   That really helped get the friendship thing going.

Every year we vacation with my parents at their second home in Florida.  This is nice because we drive down from Minnesota and the kids travel well.   No need to worry about possible tantrums on a crowded plane.  Also, Tony gets to know the routine. When we arrive, my parents have taped his favorite cartoons, and stocked up on foods he likes. The place is familiar and they can babysit Tony if we want to take Tara to one of the amusement parks.  We even have a date night.  This year we decided to do something different.  My parents get all of us an awesome hotel suite on the ocean.  Things go pretty well at first, but when we try to go swimming in the pool there are too many people. Tony wants to run around.  When he gets to be too much to handle, we head back to our room. Tony is very upset.  He wants to go back to the pool.  We tell him that the pool is closed.  He runs to the balcony and looks down at the pool and can clearly see this is not the case.  He yells to the swimmers below “Help me! Help me! I’m trapped.  I’m trapped like a rat in a cage?!”  We pull him away from the window and my dad remarks that he is paying quite a bit for this rat cage.  Tony pulls out his crayons and some paper and writes my mom a letter: 

Dear Grandma, 
You lied to me!  That pool is not closed!  I am so mad I think I will blow you up!
From Tony
P.S.  I love you!

My mom is delighted with the note and wants to frame it.

Around age seven we went through a hand kissing faze.  Tony had to kiss the hands of complete strangers.  Two cute Tony stories came out of this period and several annoying incidents as you can imagine.  One day we ordered a pizza which was delivered by a blonde surfer-type boy.  Tony darted out the door, grabbed the boys hand, kissed it and said “I love you.”  Cool as a cucumber, the kid flashed Tony the peace sign and says “Love you too man!”  Now, I too love the sweet pizza boy and am so grateful for his kindness I give him a huge tip.  Weeks later we are at a doctor appointment for Tony.  We are seated in the waiting room next to an elderly woman who probably suffers from diabetes.  She has a knitted afghan covering her amputated legs and she is missing several of her fingers.  Tony walks up and whispers a secret in her ear and she smiles, then he takes her deformed hand and plants a kiss on it.  I remind him that we don’t kiss the hands of strangers.  He says “I don’t care.  I made her happy.” How can you argue with that?

As Tony gets older, he can adapt better to new situations.  We join a new church and for the first time we can all sit together during services.  Pastor Steve quickly becomes great friends with Tony.  He always makes a point to greet Tony and Tony nicknames him P.S.  I am never sure how much of the sermon Tony listens to or understands.  He surprises me quite often.  One Sunday Pastor Steve talks about the “Beatles” during one his sermons.  After the service everyone walks out and stops for a brief moment to shake the Pastor’s hand.  When it is our turn Tony says “Pastor Steve, I noticed that you referenced the Beatles today.  Did you know that three of the four Beatles have appeared in “Simpson’s” episodes?”. Pastor Steve laughs and says he didn’t realize that.  Then Tony says “Would you like to know which Beatle and what episode?”  Pastor Steve says “Yes”, even though we are holding up a long line of people behind us who really just want to get out of church.  Tony replies “ Ringo was in “Brush with Greatness”, George Harrison was in “Homer’s Barbershop Quartet”, Paul and his then wife Linda were in “Lisa the Vegetarian”.  We all laugh and then Tony says “Can I ask you one last question?  Does God really look like Morgan Freeman?”  (For those of you who aren’t movie buffs, Morgan Freeman plays God in the movie “Bruce Almighty”.)   Pastor Steve starts to say “No”, and then says “Honestly, I’m not sure”.

During Tony’s last year of school he attended a program where he worked at a movie theater for a couple hours a day.  This was a great job since he loves movies and every Friday got to see one for free.  One day he was working as the ticket taker.  A woman walks in with a small boy and Tony asks her where the boy’s tickets is.  The woman replies that children three and under get in for free.  Tony says, “That’s fine then, just make sure he doesn’t watch the movie.” Everyone I know cracks up when I repeat this one.

When I am explaining Tony to someone who hasn’t met him I say “Think of Will Ferrell in “Elf”.  That is Tony to a  “ T”.  He’s sweet, honest and a little naïve.  He even looks a little like that character, very tall with curly hair.   Tara describes him nicely, “Tony is just so true.”

We were entertaining guests one evening and it was getting pretty late.  Tony came down from his bedroom and said “Look, I don’t mean to be rude but there is something I really need to know.  What time are you people leaving?”.  I had to laugh since I was wondering the same thing myself.  People say that Tony only says what everyone is thinking but are too polite to say.  He has a very sweet and innocent way about him so he usually gets away with this without offending anyone. 

Tony is tall and has always been a little heavy.  He decided he needed to be healthier and on his own started to cut down on portions and go on power walks.  We were all amazed when the school nurse told us he had lost 50 pounds from the previous year.  People would ask him how he lost the weight and he would say “It’s easy, eat less, cut down on snacks, and exercise.”  There you have it in a nutshell, he should write a weight loss book.

Through the years we came in contact with so many great people because of Tony.  He had some fantastic teachers, aides, doctors.  I was always so grateful to everyone who helped us on our “journey”.  I’ve made some lifelong friendships with educators and other parents of children with disabilities.  Our families were tremendously helpful and we were lucky we lived so close to both sets of parents, as well as aunts, uncles and cousins.  We couldn’t have done it alone.

For years I helped run a parent support group.  We all had children with a variety of disabilities, Attention Deficit, Learning Disabilities, Asperger’s, Autism. It didn’t really matter since we all shared so much in common, dealing with schools, relatives, parenting & medical issues.  Those early years were really rough.  I went through a bout with deep depression. I worried constantly if I was doing enough for Tony and my family.  What would the future bring?  Sometimes when a parent of a newly diagnosed child joined the group the pain on their face was almost too much to bear.  I would think to myself  “I wouldn’t go back to that period of my life if you paid me a million dollars”.  My big “Oprah-esque AH-HA” moment came one night when I was talking with my husband George.  I was worrying about some problem with Tony and George turned to me and said, “What do we want for our children?  Don’t we just want them to be happy?  Tony might never get married or have a high powered career but he’s the happiest person I know.  I think we did a good job”.  At that moment I felt like a huge burden was lifted.  He was right and so was my mom.  This kid is going to be just fine.

The graduation is wonderful despite my continual tears.  Since there are only 15 graduates the speaker talks individually about each of them.  I see Tony perk up when she mentions his love of movies and Japanese Anime.  After the graduation there is a little reception, I see the superintendent walking towards me and immediately feel embarrassed about my crying jag and start to apologize.  She says that the principal next to her was new this year.  “When I saw you I turned to him and said, There’s a mom who’s been through it all.”  I guess she’s right.   Afterwards, in the car on our way to get some ice cream to celebrate, George asks Tony if he was listening to the graduation speech or just zoning out.  Tony says “A little from column A and a little from column B”.  This makes me laugh and I think, “My mom would have loved this Tony story.”

Julie Tatro is the proud mother of Tony, a young man living with autism.  Julie lives with Tony, his sister Tara and husband George in Lake Elmo.