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In Their Own Words – Expectations

July 28, 2010 8 comments

This “In Their Own Words” essay is written by Erin Perry. Her son was diagnosed in March of this year. You can read more about Erin and her family at their website Autism Village.

Life is full of expectations. From the minute we all enter the world, we are expected to do things like walk, talk, go to school, have a first kiss, graduate, get a job, have a family – the list goes on and on. So entrenched are these expectations that we live our lives by them, become upset or disappointed when we don’t meet our own (or more likely when other people don’t meet ours) , and we judge others according to them. Expectations are a powerful tool – but when you have a child with autism, in an instant every expectation you once had, is ripped away leaving you feeling raw, vulnerable, and frankly, scared.

I have always been a very driven person. I expect a lot of myself, and I expect a lot of others. So when I found out I was pregnant, I built up in my head what my life would be like with a child. I imagined taking family vacations and watching my son play sports. I thought about  the late night conversations we would have when he came home too late for curfew. I expected that it would all be typical, normal, and even (dare I say) easy.

With Brayden’s diagnosis, I have learned there is only one thing to expect – the unexpected. The first adjustment I had to make was letting go of those later in life dreams, for now. No more thinking about college and grandkids – my son lives in the moment, and I had to learn how to alter the way I thought to only include the immediate future. Instead of looking forward to college, we work with every breath to hopefully get Brayden to kindergarten, and maybe even in a mainstream classroom, but that is about as far in the future we go.

On the other side, when we heard the final diagnosis of autism, certain expectations also go along with it. It’s the long list of things your child may not and will not ever do. But that’s the funny thing about autism – just when you expect your child to never do something, he will blow away that expectation. My child has a frequent habit of doing  just that. For me, I believe it’s his own little way of saying, “See, mommy, I can do it – keep pushing, keep going.”

Today at Brayden’s new developmental preschool, he sat in a classroom full of seven or eight of his peers, and when the teacher sang “Old McDonald had a…” and stopped, waiting for one child to shout out an animal so the song could continue – my son screamed out, “A COW!” For those unfamiliar with my son, he very rarely says anything without a prompt by an adult to do so. What most people would expect a child of 2 1/2 to do naturally and easily…turned out to be the best unexpected surprise of my day – and another little moment that whispered in my ear, “Keep going, Mommy.”

When Brayden was diagnosed, we expected many things that never came true. We expected to have a better support system, we expected insurance would cover therapy, we expected that people would be accepting of our son. But when our support system crumbled, insurance wouldn’t pay, and people started judging our son and us – other, more positive things, have filled the damaged parts of us. We never expected the support and kindness of so many strangers. We never expected so many people to reach out to us the way they have – and fill our lives with hope again. And we never expected people to be willing to give up time, money, thoughts, and prayers – all for our little boy.

So while we now are learning to let go of expectations – it is these positive unexpected things – that make me still have faith in the world (as cliche as that sounds), and push me to keep going for Brayden every day.

“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.

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In Their Own Words – What a Difference a Day Makes

July 6, 2010 13 comments

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.

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