Home > In Their Own Words > In Their Own Words – What a Difference a Day Makes

In Their Own Words – What a Difference a Day Makes

This “In Their Own Words” essay was written by Matt Rizzo, of Creve Coeur, Mo., who has a son with autism.

I will never forget the day. While the details escape me, the day will live on. Was it sunny? Was it raining? Maybe it was overcast. All I remember is how I felt. I was insanely nervous. I was dreading the appointment. It was a day that we had been building up to for the better part of a year. My wife and I were going to a neurologist to see if our son, Gabe, had autism.

For about a year we had been noticing that Gabe was missing developmental milestones. He was always on the low end of “normal.” His ability to interact appropriately with other kids of his age was drastically deficient. He began repetitive behaviors such as running back and forth, crashing into walls, spinning in circles, etc. So I did what any self-respecting father would do. I got on WebMD. (Sidenote: don’t look at WebMD. You will always end up with terminal cancer.) The good doctor told me what I had been fearing. Gabe had autism. But this was just the web talking. There were other signs of “normalcy” that I chose to cling to. Maybe this was just a phase. Then came the moaning and the lack of speech. He had a 40-word vocabulary, but chose to not use it. Instead he would spend the day moaning. We knew something was not right. We finally made an appointment with a neurologist to see if we had a true case of autism or if we were just being paranoid.

I remember getting to the doctor’s office and sitting in the waiting room. Gabe was restless as usual and wanted to run back and forth, so we let him. I was trying to stay calm. After all, for the last six months I had been looking at WebMD and was aware of what autism was, but not what it really meant. I knew that the disorder entailed social difficulties; I knew that speech was sometimes difficult. I knew some of these people were insanely intelligent and incredibly talented, but I did not know what that looked like or felt like.

We were shuffled into the office and Gabe played with some toys. The doctor began asking my wife and I standard questions. We answered with as much detail as we could and explained why we thought one thing or another. In retrospect, we were probably shading the answers in such a way that would make Gabe appear more “normal” than he actually was. After about 20 minutes of answering questions, the neurologist observed Gabe playing for about five minutes. It seemed much longer than that as we simply sat back and watched as well. The doctor then stopped and asked if we had any questions for him. I remember thinking to myself “Yeah, man, what’s up with my kid?” Fortunately, I allowed my filter to kick in and instead asked “What are your thoughts?” His response, “Oh, it’s autism”.

Three words.

Three words I will never get out of my head until the day I die.

In that one moment my entire life changed. I was speechless. I have only found myself in that condition a few times in my life. I truly could not come up with words. I remember looking out the window wondering what all this meant. My wife began asking questions of the doctor and he promptly began surfing the web to print out resources for us. I felt like an airplane just landed on me. We left the doctor’s office with more questions than answers. These questions still keep me up at night. Will Gabe have friends? Will Gabe need assistance in living his adult life? Will Gabe be living with me and my wife ’til we die? Who will take care of him after we’re gone?

In the last year, those questions have been removed from the front of my mind, but they will always be there. Instead, we have learned to take each day one step at a time. There is so much we don’t know, so instead we focus on what we do know. We know that Gabe has made huge strides in the last year. Instead of moaning, Gabe tells us what he wants now. He is starting to mimic “normal” behavior. We know that Gabe is the hardest worker in the house. Gabe goes to school for eight hours a day, including therapy. He is not yet four years old. We know that Gabe has a big sister who doubles as a full-time therapist and gives more to her little brother than any six-year-old child should ever be asked to, and she does it with a smile. We know that we will always be Gabe’s voice when he does not have the ability to show the world his. Outside of this, we let each day happen and react to it as best we can.

April 14, 2009 was the darkest day of my entire life. But from that darkness came an understanding of who Gabe is. Until that time, I did not know how to build a relationship with my son. Having him diagnosed opened up a world to us that allowed us to shine light into the unlit corners of Gabe’s mind. Doing so has allowed me to finally connect with my son. He loves music. Every night, Gabe allows me to fulfill my childhood dreams of being a rock star when I play guitar for him while he takes a bath. He makes me proud every time he tackles me and punctuates it with a “Go Steelers!” He warms my wife’s heart when he is going to bed, hugs her, smiles and says “happy.” It was the worst day of my life, but my family was made better for it. My family has united around Gabe. We don’t kid ourselves and we don’t set expectations. We don’t ever think he will be “normal”, and honestly, I am not sure I would want Gabe to be anyone else other than who he is.  He is our “Buddy” and we like him just the way he is.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

  1. Courtney
    July 6, 2010 at 10:10 am

    This took me back to the time my son was diagnosed, just a month or so before yours. The emotions, feelings you had, exactly the same for us. Bless you for being such a great father, thanks for sharing.

  2. Lydia Bush
    July 6, 2010 at 10:12 am

    Thanks for your honesty about the hopelessness you felt that day. My husband and I have been through everything you said basically, and it’s inspiring to hear about another couple who has made it through the worse part.

  3. Jennifer
    July 6, 2010 at 10:17 am

    ADVENTURES IN AUTISM FUNDRASIER
    ITINERARY
    7:00-10:00 Event Set up

    10:00 Bikers check in

    10:30 Pre- Meeting for Mountain Bike Racers to brief them
    On the course and safety

    11:00 Approximate 5 mile Mountain Bike Race Start Time

    12:00 Food, Activities, Games, Music and Entertainment
    begin The band Underground Season is performing

    12:00 Autism Awareness Hike Check In-Learn facts about autism

    1:00 1 Mile Hike Start time

    2:00 Magic Show Leon Etienne

    3:00 Chinese Auction Results

    4:00 Event Ends

    An official flyer will go out next week with more details. You will be able to register online then also. This is just to get the word out there and give everyone an idea of what to expect. For any questions, you can contact Jennifer Hall 315-525-6316

    • Jennifer
      July 6, 2010 at 10:18 am

      Event is based in Ilion, NY!

  4. July 6, 2010 at 10:25 am

    Wow,what a heartwarming account of your journey with your son. This made me cry, smile and remember. I too have a son with autism, he is 12 and was diagnosed when he was 3. I too remember the diagnosis day, although I had done enough research on my on to not need a Dr. to tell me what I knew, My son was autistic. Still those words from a Dr. I can still hear. I am glad to hear your son has made such progress. I can tell you if anyone had told me 8 years ago that my son would be the young man he is today I would have told them they were crazy! He too has changed our lives and I would not want him to be anyone other than who he is. You sound like a awesome Dad, continue to love on that little guy, encourage him and fight for him and you will be amazed at how he blossoms. Thanks for sharing your story!

  5. kate
    July 6, 2010 at 10:40 am

    my father took it real hard that i have autism. it seems as though you have incredible strength. i wish you the best & hope that you are able to inspire other dad’s to feel empowered about their kid’s condition.

    to me: it takes a sea full of positive parents to make our community work. :)

    good luck!

  6. Wendy Copeland
    July 6, 2010 at 10:56 am

    I work with children with autism–and their families. I just know in my heart that every child or adult with autism is surrounded by those who are meant to be with them. I also know that each one of us has been given a gift that, while sometimes hard to open, is a very special treasure.

  7. Dawn McDaniel
    July 6, 2010 at 12:50 pm

    I am a teacher of autistic high schoolers up to age 22. I am so thankful and pleased that many of my “kids” have families like yours – that embrace their child & will do anything to help them be all that they can be! And for your own comfort, let me assure you that the therapists and teachers who will pour into Gabe will love him as much as you do, and will rejoice over his successes just as you do! We pray that Gabe will have many successes and joys in his life – having you for his family as him on the right track already!!

  8. Elizabeth
    July 6, 2010 at 4:07 pm

    I remember the day my son was diagnosed, I am a mom i hope that it is ok that i post to this. I do also remember my partner was in deinal. Tim refused to believe it, he still to some extent is that way. I am so please to hear that fathers are standing up and speaking there hearts. I was sitting on the back porch,and Robert was at school. It was around 10 am and the teacher called me after having a series of test dome in school. I heard ” Liz we think that Robert has Aspergers.” I dont after that remember a thing that they said after that but crying and when we were done talking her saying that “Liz he will always be your Robert your special little boy” I still cry when i think about that day. After that we took Robert to a well known developmental center and were told that he indeed had Aspergers. That was the second worse day of my life. He is doing ok for the most part there are days from hell, but those days are made better by the good days.

  9. Jason
    July 6, 2010 at 10:20 pm

    I am a dad and my 3 year old Jesse was diagnosed with PDD-NOS. I still struggle to accept this but i am trying. Reading your story makes me feel that at least their is someone out there who understands my life (and my familys). Thank you for sharing your story and may god bless your family and science continue to uncover more truths surrounding this mystery syndrome.

  10. Simon
    July 7, 2010 at 7:14 am

    A really touching, open & inspirational story. It helps so much to read about other families with an autistic child, learning of their history and approach to helping their special little buddy.

    I’m really proud to have an autistic child and likewise, wouldn’t want my son to be any different than he is. One of the most amazing journeys to look forward to is to see them grow & develop and learn of the many strengths that lay within them.

    Thanks for sharing and best wishes,

    Simon

  11. Ree Ginyard
    July 7, 2010 at 8:08 pm

    Thank you for sharing this story. My son is almost 4 and was diagnosed just a few days before he turned 2. Your story really touched me. I too like so many us of will never forget that day, but what I took away from this story is guess what…i dont think I would change my son either. He is such a trip. He is my little boo boo and I love him to death.

    Thanks again and God Bless.

  12. Melynda
    July 8, 2010 at 2:57 pm

    This was perfect!!!! I too remember the day the DR. suggested this of my daughter… I don’t remeber much else of what she said! It has been 3 years, and my baby has made tremendous strides! She is extremely intellegent, funny, loving and happy! My older two kids have been nothing short of amazing, they too are like part-time aids to the baby sister!!!! And my husband has been great, we are all in this together! Thank you fo rsharing :) melynda

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