April 1st marks the beginning of an important month. No, the important part is not the fact that it marks the beginning of a new baseball season. No, it is not some silly day to joke around. Instead, April’s significance lies in the fact that it is Autism Awareness Month.
I originally intended to write the incredible article quoting statistics like “Autism affects 1 in 110 children” or that it affects “1 in 70 boys”. The intention was to stir emotions and make you, the reader, feel the anger that comes with the fact that more money is poured into Viagra medications than into researching the causes and treatments of Autism. The intentions were good, but the execution would’ve been flawed.
You see, you have to walk in the shoes of a parent of a child with autism. If you are not one, you can’t possibly feel the emotion, the heartache, the love, and the desire of each and every day. My article would’ve been factual, but it would’ve lacked that personal connection and that respect for both parents and child.
I do connect with Maury Brown on one level. I understand the love he has as a parent for his children. I can relate to that; I know that like me, Maury wants to make everything all better for his children and suffers when he cannot. But Maury and his wife have an additional worry; their son, Travis, is a child with autism. Rather than write something and try to tell their story, I want you to read Maury’s answers to my questions. You’ll find his words powerful; you’ll be inspired to do something while, at times, be reduced to tears. You will also be awestruck at the strength of each answer: the love of a father for his son.
As April begins Autism Awareness Month, Maury Brown, the President of the Business of Sports Network, shares some insight as a Father of a child with autism.
FullCountPitch: I’ve read your blog piece on the moment your life changed when you found out your son was autistic. It was a heart wrenching, yet beautiful piece of writing that showed both heartache and resolve. For my readers, could you discuss that moment your life changed? People hear the word autism all the time, but can’t grasp the emotions a parent feels. What were your feelings at that moment as a father?
Maury Brown: Well, we had thought that Travis might be autistic. There were signs… he regressed in his development and there was a lot of jumping and hand flapping. But, when you get the news, there is that sense of finality to it, which is both good and challenging. In one sense, you can hang a name on what has touched your child, learn about it, get therapy, and focus on what you’re going to do next. The downside is that, at least in our case, we understood that autism would be part of Travis for the rest of his life, and with that, it would be part of ours. We learned quickly not to try and think too far out into the future because it can be daunting, but more importantly, we learned that there was more capacity in him through constant therapy than one might imagine initially. You learn very quickly about the word, “Hope.”
FCP: Looking back at that moment, what would you tell yourself then that you have learned now?
Maury: Don’t see your child is being stuck in the same state. Initially, Travis was nearly a blank slate. Where many children, even without verbal capability, can communicate by pointing at something they want, or, say, rubbing their stomach if they are sick, there was none of that. Now, Travis, through some coaxing, will make eye contact. Tells us what he wants and doesn’t want. Knows how to count to 20, his colors, his shapes… just at a regressed state (he’s about to turn 5). Biggest thing learned? Roll with the punches, and remain forever positive.
FCP: What is the most common misunderstanding about autism?
Maury: Oddly, for many, it’s being able to spot it. Where some developmental disabilities have outward physical aspects – sitting a neurotypical child next to a child with say, Down Syndrome you can see it — a child with autism, or Aperger’s Syndrome, a higher functioning form of autism, looks much the same. I would say this: next time a child is having a meltdown in a public place, it might not be a bratty moment, but a child that could be on the autism scale that is simply overwhelmed.
FCP: I’ve read that you said that there is no such thing as a typical day with an autistic child. What is a typical day in the Brown household?
Maury: Unfortunately, tiresome. Travis has not only communication difficulties, but he has outward physical aspects. His brain is under-stimulated, so running, or jumping is a form of trying to stimulate his brain. That ties into sleep patterns. I would say 3-4 days a week, Travis is up at between 2-4am, even when giving him melatonin, a natural sedative the body naturally produces, and getting him to sleep at 9pm. We also have an older son who is 8, so what winds up happening is a lot of tackling things in shifts with the two of us napping when we can. Travis is also highly influenced by cause and effect. He loves to do things like grab a roll of toilet paper and roll it down the hall, or worse, take something and flush it down the toilet to watch it spin. So, it is not only physically tiring but emotionally taxing as well. I tell those that haven’t been around kids with autism but have kids of their own, imagine that “on guard” phase when had a toddler… getting stuff out of their mouth, making sure they don’t trip down the stairs, don’t touch the hot stove, and then imagine that not stopping as their child develops. That’s where we are. My wife now has an incredible depth of patience that she didn’t have prior. With Travis being extremely attached to her, a lot of the responsibility falls on her shoulders, and I find her to be remarkable in how she does it.
FCP: What is your definition of normal?
Maury: This is a great question as it has changed dramatically. My wife and I now see more and more parents and their child on the autism scale all over the place. If not that, you mention the word autism, and you get head nods and something like, “I have a family member on the scale.” With the CDC reporting that 1 out of every 110 children is now born on the autism scale, with it being 1 in 70 boys, our definition of normal may need to get a different set of eyes.
FCP: How has autism impacted your marriage? Your family? (Don’t necessarily mean in a negative way)
Maury: Initially, it put a stress on our marriage. I won’t kid you; it’s still a stressful life. We’re both highly competitive individuals to begin with, so there was a lot of, “Well, I’m more exhausted than you are.” “Oh, yeah, well I’m more exhausted.” We saw that the friction was not going to help us as it added more stress, and didn’t help either of our children. We’ve pulled together by letting go. In that I mean, there’s that saying, “Don’t cry over spilled milk,” well, it happens all the time with us. The second or third time a half-a-gallon of milk gets poured on the floor, you look at each other, shake your head, and each head for the cleaning supplies. We have become infinitely more patient. Everyone in the family has learned that things that a lot of society stresses out about; getting stuck in traffic; long lines at the grocery store… the mundane activities in life, are really very, very small and a waste of energy. Autism has, oddly enough, been a very liberating experience on some levels.
FCP: Could you share a moment that you’ve had with your son that autism didn’t impact?
Maury: Oh, there are many. We run and play outside all the time. But, the one thing that is really great is being able to go on short hikes. We’re fortunate to have a couple of State Parks right inside Portland all of 20 min. from home, where you are in the forest in the middle of the city. When we’re there, we’re just taking in the splendor of it all, so the parent and child are on equal footing.
FCP: What is the most frustrating thing about autism for you as a Dad?
Maury: Well, there’s not enough space here to really say all of it. The biggest thing is how society has a tendency to judge without knowing the particulars. Those on the autism scale are extremely schedule driven, and many have environmental distractions, such as lights or noise that can be overwhelming. Travis may, at a given moment, simply breakdown, and when that happens, it’s time to go. Friends and family learn real quick that when I say I have to get off the phone, it’s nothing personal. The other thing is, your idea of how you were disciplined, and therefore, how you discipline your child, goes out the window. We tell Travis he has to clean up his cereal that he drops on the floor, but you can’t say, “If you do that one more time, you’re going to get a spanking.” The child is completely innocent in that regard. So, “discipline” has to give way to “structure” and that’s not always easy. When you’re tired and frustrated, while dealing with communication issues, you have to be especially careful not to get angry when inside, the child can’t help themselves.
FCP: Has there been advancements in treatment? What has your experience been with your son in terms of services, help, methods?
Maury: Oregon’s services, quite honestly, are horrible. We are fortunate in that we did early private therapy that was taught to us, and now it is just part of life. We place Travis’ hands on our face, and get down on our knees at his level which really helps drive eye-to-eye contact, something that is a key missing communication element with autism. Everything – and I mean everything – is used as a learning experience. Counting the stairs in the house; asking him what color his shirt is; pointing to pictures or people and getting him to say who it is, it has to be a relentless pursuit to try and get him to a point where he can function on his own in society. When coupled with his very dedicated teachers in pre-school, we have seen incredible advancements we thought we never would reach.
FCP: If you had the floor to speak with parents who just found out their child was autistic, what would be the advice you would give them?
Maury: Your emotions are valid. In some odd way, when you get the diagnosis, it’s much like a death in the family. Every parent has these visions of what their child will achieve, and those achievements will now, for some, not be met. So you grieve a bit, get depressed, but, for the sake of you and your child, you need to move past that as soon as is reasonable and start getting on getting on — helping your child. The most important thing is to never give up hope. You will find that what seemed to be very ordinary in your life before autism is now an extraordinary victory. Little advances become moments of great celebration, and in that, you gain some of that childhood innocence that was lost as we grew up.
FCP: We have several different forms of Viagra, anti-aging drugs, and things of the sort, but still little headway into solving autism. Why do you think there has been so little done for a condition that is literally impacting millions?
Maury: It is highly complex, and not yet fully understood. There is clearly genetics at play; so a couple may be predisposed to the possibility of having a child with autism. But, there is some trigger mechanism that is still elusive. There is some feeling that it may be environmental in nature, but there will need to be much more research. I’m grateful that there are organizations such as Autism Speaks, and the Autism Society of America that are working to raise money to uncover the mystery of it. Whether there will ever be a cure, I am unsure. But, I do think that there will be the ability in the near future to inform couples that they might be at risk for having a child born with autism.
FCP: How has The Business of Sports Network allowed you to help raise the awareness of autism?
Maury: The Business of Sports Network, and specifically, the contacts that I have made in sports business especially on the baseball side, has allowed me to use the platform and reach compassionate people such as yourself, to help others get a better understanding of autism. I have been amazed at how many of those I am in contact with have family or friends with autism. Whether it has been Mariners president Chuck Armstrong, who has a granddaughter with autism, Curt and Shonda Schilling, who have a son with Asperger’s Syndrome, or Alyssa Milano who knows and been touched by people on the autism spectrum, I have been blessed to reach many that are willing to spread the word to help others.
FCP: Because of your business, you’ve had a bigger platform than most parents. Having connected with so many people, what is one thing that you draw from other people? What has surprised you about other parents in similar situations?
Maury: There’s this saying that if you meet one person with autism, you’ve met one person with autism, a nod to saying how broad ranging its effects can be. But, what is really amazing is how much the parents and family have in common. An example… We went shopping as a family, and my wife headed over to the diaper section (for those that have kids with autism will tell you, potty training takes a while longer when you have troubles communicating). A woman with a boy in the cart asked my wife if the pull-ups she was getting ready to purchase worked well. She said yes, to which the woman replied, “Well, mine is a bit older… he had autism.” This was a total chance meeting. Next thing you know, it was a 20 min. conversation between two parents with similar challenges. No matter whether it has been this chance meeting at Target, or talking with the Schillings, the surprising thing is, autism crosses all boundaries.
FCP: What are some of the things readers can look forward to on the bizofbaseball.com during Autism Awareness Month?
Maury: Well, for one, a fantastic and insightful interview with Curt and Shonda Schilling on Thursday. We will be running content from Autism Speaks in the form of PSAs, namely one by PGA golfer Ernie Els, who has a son with autism, and we’re working on possibly one other interview. On top of all of this, there will be information about autism that we hope others will pass on to make parents aware of the developmental disorder.
FCP: Besides money, what can a person do to help raise awareness?
Maury: Pass on information. Tweet our links to stories on Twitter. Post info on Facebook. Let people know that no matter what walk of life, what race, creed, color, religion, or socioeconomic status, autism can touch you.
Be sure to follow Maury Brown as he helps raise awareness of Autism throughout the year, but specifically during the month of April. Be sure to read his interview with Curt and Shonda Schilling as well as to check in on his site daily.
If you would like to find out more information about autism or how to donate to autism research, head over to austismspeaks.org.
Category: FCP Classic