Kerry Brooks has worked in federal law enforcement for nearly 30 years, also serving as a diplomat during his time in various countries. His most important roles, however, are those of father and husband, especially when at just three years old, Kerry’s son, Max, was diagnosed with autism.
At the time, their physician offered only two recommendations–prepare their son for a group home and focus on having other children. This wasn’t going to fly with Kerry, and refusing to follow the doctor’s orders, he and his wife continued to search not for a cure, but for strategies that would help their son reach his highest potential.
In his book, Autism 2 Awesome, Kerry shares these strategies and his family’s journey from devastating diagnosis to high school honor’s graduation. He believes, no matter the challenge, every parent can benefit from looking within, trusting their instincts, and, most importantly, celebrating every miracle.
Drew Appelbaum: Hey listeners, my name is Drew Applebaum and I’m excited to be here today with Kerry Brooks, author of Autism 2 Awesome. Kerry, really excited you’re here, welcome to the Author Hour podcast.
Kerry Brooks: Think you for having me, I really do appreciate it and I’m excited to be here.
Drew Appelbaum: Awesome. First, tell us a little bit about your background, and then we’ll get into what inspired you to write this book.
Kerry Brooks: I’ve been in federal law enforcement for about 29, 30 years and along the way, I’ve traveled around the world and worked in the United States in several places. Also, I’m the father of five boys, and the first one was diagnosed with autism.
Drew Appelbaum: And what inspired you to write this book?
Kerry Brooks: After our son was diagnosed with autism around late 2002, 2003, we were very frustrated with some of the services that were available–I should say lack of, that were not available. When we went through the journey with our son and being able to help him, I wanted to be able to help others learn from my experience, and hopefully, ease some of their pain, ease some of the anxiety, and also to help their child and their family reach their highest potential.
Drew Appelbaum: Do you think this book is for parents with autistic children, or do you think this book is also for everybody else who could learn about how to deal with children and adults who have autism?
Kerry Brooks: When I first decided to write this book, I was definitely targeting the families who had a child on the spectrum, that was my main focus, my main goals. As I continued to write the book, I saw how the journey had actually transformed not only me but our family as well. I had the opportunity to have a few close friends read the manuscript before we went into publishing and they agreed that this is not just for a family with autism, but for anyone who is looking to overcome a crisis, anyone going through a tough situation, anyone that’s looking to be inspired.
My focus was on families who have someone diagnosed with autism, but I think it covered a large variety of people who are looking to overcome a crisis and figure out how to do things better in their lives.
Diagnosis
Drew Appelbaum: Let’s go back to the beginning. How old was your son and what were the first signs you saw that made you decide, “Hey, we should go see a doctor?”
Kerry Brooks: Our son was diagnosed late 2002, early 2003. Some of the signs that we noticed early on that really prompted us to go see a doctor was that his speech was progressing normally, but then after that, he regressed to about two words. Then we started noticing unusual–what we called meltdowns. And they lasted from anywhere from 10 minutes to 40 minutes.
We started getting concerned about why these meltdowns were taking place for so long, he wasn’t sleeping during the night, he would probably get maybe two hours of sleep. He had a very limited diet that he would eat, and we also noticed that, when we would speak to him, he wouldn’t really make any eye contact with us. Also, he started to take his toys and just line them up perfectly, and would just stare at them for hours if you allow him to do so.
These traits, these signs started to worry us and concern us, and that’s when we started looking for help.
Drew Appelbaum: You went and you looked for help, and you spoke to a doctor, and you received the diagnosis that your son Max is on the spectrum. What was that initial feeling like for you?
Kerry Brooks: Wow, even now, years later, going back to that moment in time is still overwhelming. It was devastating. He was our first son and, as a parent, when you have that first child, you know, you have all these expectations that are going to be total bliss, you’re going to have this perfect child, wrapped in this perfect package, you know, no problems along the way, no challenges along the way.
It was devastating for us as a family to receive this diagnosis because you have to understand, we didn’t know anything about autism. We didn’t understand what autism is, how it happened, how could it happen, could it have been prevented? We were just overwhelmed, and we went on to learn how can we go about helping him, but it was a life-changing moment.
Drew Appelbaum: That leads me to the next question, what did you know about autism before that moment? Coming into that first doctor’s office, what had you heard, did you already have preconceived notions?
Kerry Brooks: The thing about it, you hear things about something but if it doesn’t affect you directly, you don’t really pay attention to it. I didn’t have any vast knowledge of autism. I heard about it, but I didn’t have any kids, so I really didn’t pay attention to it at that particular time. I started paying attention to autism when our son was diagnosed, but I didn’t have any background about how we would go about handling the situation if our child was diagnosed, so I didn’t have any knowledge of anything. When we got the diagnosis, we were stunned.
Drew Appelbaum: Talk about your initial fears. You get home and what’s rolling through your mind?
Kerry Brooks: My god, everything. Mainly, what type of life will my child have? Because shortly after we received the diagnosis, we visited another general practitioner and his recommendations were that we prepare our son for a group home and focus on having other children. Because he said, there was nothing we could do for him. We were just overwhelmed, frustrated, and heartbroken because the fears were, will he ever have a typical life? Will he ever make friends? Will he ever be invited to a birthday party? And who will take care of him when we’re not around as parents?
Those are some of the biggest ones that come to my mind right away. Because parents love their children, they want to give them all that they have, they want to make sure that they’re well and taken care of. We were just the same as well, but we had a big concern about who would care for our son when we were no longer able to.
Drew Appelbaum: You also mentioned that there is a “why me” phase. Talk to us about the why me phase and how you got past it.
Kerry Brooks: I definitely believe with any crisis, and believe you me, when we received the diagnosis that our son was on the spectrum, it was a crisis. I just believe in any crisis, you have that conversation with yourself, “Why me?” Or if you are a believer in God, which I am, you have the conversation with God, “Why me, God? What did I do wrong?”
You have these doubts as though maybe you did something wrong. You didn’t, you didn’t do anything wrong. Along the way, we made bad decisions, but you know, when you go and start a family, you do your best to do the right thing, and some things just happen. You have no control over them. The way that we were able to process our way through it was to be thankful that we have this person here with us, our son, and we have an opportunity to learn from his situation.
We took on this as a learning opportunity, this crisis, we didn’t want to be there, trust me, we did not want to be in that moment. But we also looked at, “How can we go through this moment, learn from it, and grow from it?” We started taking it one day at a time, and that was the whole objective, to help him reach his highest potential and for us to learn as much as we could about ourselves, about his diagnosis, so we could help him.
The Value of Sports
Drew Appelbaum: Right, you take your child to a doctor, you hear this absolutely insane advice from that doctor, you go through a “why me” phase, you’re initially feared, yet you took this diagnosis and you turned a complete 180 and forged your own path.
What was that transition like? How long did it take for you, were you reading things, were you coming up with things that resonated with Max? How much of this were you making up yourself versus stuff you had read or saw elsewhere?
Kerry Brooks: I will say that Max’s mother is the cornerstone of getting everything started medically. She’s a very bright, very smart woman, so she was the cornerstone. She read voraciously and would take copious notes. She would tell me, “You don‘t need to read the whole book. Here are my notes, read this.”
We had a tag team going on. We came up with a plan where she would tackle the medical aspect. As a father, because a lot of times, at least what I noticed in my own experience, talking to other fathers and talking to other mothers who have children on the spectrum, a lot of times, fathers are pretty much closed in. They don’t really want to talk about it during the initial shock, which is understandable.
As a father, I jumped in. I have a background in playing college football. I love sports and I started immediately getting him involved in physical activities. I just wanted to get him involved in physical activities and help him to learn as much as possible while having fun so that he didn’t even really know that he’s learning. They worked out really well for us.
That led us to get him into playing basketball all the time, teaching him how to ride his bicycle, going to the park almost every day, and doing what typical kids would do when I was growing up. Now you have kids on the computer, but I love physical activity because you learn so much and the brain is working, and understanding how the body works, understanding how your environment works, and understanding your surroundings.
That’s what we wanted to give him with these different experiences, and that’s what he got along the way. We worked together as parents to give him as much as we could. We read a lot, but also at the same time, we end up developing a lot of strategies on our own, because every child that’s on the spectrum is different. What may work for me may not work for someone else’s child and vice versa. But we saw what worked and we took that and used that as a foundation and built on it.
But also, we saw what our son needed in particular, and we developed what he needed to help him become his best person.
Drew Appelbaum: What are those techniques you speak of in the book? Is keeping daily notes on your son in a journal? What were you putting in that journal and what were the benefits of having those notes?
Kerry Brooks: We were putting everything in the journal, I mean, everything. Because you never know at the end of the day, what’s important, what’s not important. We put everything in the journal because, you know, my wife at the time was a stay-at-home mom.
By keeping the journal when I came home, I could review the notes about what was going on, and also then, when I take over in the evening with him, then I could put in there what I noticed about him as well. The benefits are this–there’s so much information about your child, about autism, about everything that’s coming at you at one time, and I just feel that it can be overwhelming. If you have a journal, if you are taken notes, you can go back and refer to what happened on Monday when you’re sitting there on a Friday.
Also, I think when you go to the doctor, usually, the typical doctor’s appointment, people can correct me if I’m wrong, but it’s about 10 to 15 minutes in general. Now, you don’t have a lot of time to explain to the doctor, without being specific as to MC and AB and C. If you have those notes, if you have that journal, you can explain to the doctor step by step, what you are seeing from the last time you had your doctor’s appointment. You can explain, “Hey, I don’t see eye contact, he’s not eating, he’s losing weight. He’s having more and more meltdowns,” so you can explain this to the doctor, again with a clear picture in the short amount of time.
I would also tell parents and caregivers, the journal is also about how you feel. You can keep a journal about what are you going through, because, to be the best caregiver, to be the best parent for our children, we have to take care of ourselves, and we have to check in with our own emotions as well, our own anxiety as well. Having that journal lets you know how you’re feeling. It’s okay to feel sad, it’s okay to feel anxiety, this is natural.
We’re all human beings. We want the best for our kids. So, to go through those emotions, to feel this pain, and sometimes anger, a lot of frustration, it’s okay. It’s okay, it is good to get it out. It is your private moment, and it is good to get it out. You don’t have to share it with anyone else, then you come back the next day and you bounce back, and you just push through the next day.
The journal is also to record those small moments of inspiration. When the child speaks his second or third word, when the child looks at you for 10 seconds instead of not looking at you at all, to record these small miracles, these small developments that have taken place, and to celebrate them. We must remember to celebrate the smallest of details because they lead to large miracles in life.
Drew Appelbaum: Absolutely. That sounds inspiring, cathartic, and helpful for the day-to-day. You have another section in the book called Balling for Autism, which I love, which is when you explain the world’s greatest invention was simply a ball. So, not just basketball but how did you use the ball as a technique and as a device for Max and with Max?
Kerry Brooks: I grew up playing sports. I am a little older. So, we played outside a lot when I was growing up. We played with other children. I also explain that we have never had assigned playdates. We just played with kids in the neighborhood–you want to play, you come over. You walk down the street, you want to play, you play. I noticed from my upbringing how it helped me in school when it came to developing good study habits.
I said let me try this technique with him. By engaging with me, with the ball, he was having fun. He didn’t even realize that he was learning. His brain was working. What I would do is use the basketball to help him dribble with the right hand, dribble with the left hand. Now you’ve got all of these different signals going to the brain. All this communication is going on, and no one ever realizes how much it is going on, but all of it translates to school and the rest of his life as well.
Now, while he is dribbling with the basketball, I am teaching him to walk while dribbling. I am teaching him how to walk backward with the basketball. When it came to playing soccer, now he is using different motor skills to kick the ball, and he still had this eye coordination with the ball, whenever you are catching the ball, you have hand-eye coordination. If you are kicking the ball, you have the feet and eye coordination.
All of this coordination that is going on was translated into being able to sit enough to focus on what you’re doing. If you can sit and focus while you’re doing this, if you can focus while you are playing sports, that can translate to sitting and focusing while you are in school, for shorter periods of time, and then for longer periods of time as well. Not only that, but he was also having fun. So, now while he is having fun, playing soccer, playing basketball, he is also engaging with his teammates.
Being part of something that you see as bigger than yourself, everybody wants to be part of something–most people want to be part of something. So, he is a part of this team and they just accept him for who he is because, at that particular age growing up, everybody’s different. Some people are more different than others. Some people the difference doesn’t show us much, but everyone is different. The key out there is to have fun and that’s what he did.
Being exposed to other kids, being involved as a group, and being able to have fun just played a huge difference. That is one of the reasons I believe that the ball is the world’s greatest invention, hands down.
Assembling a Team
Drew Appelbaum: I love that. So, you talk about fun along the way but there are also some parts that aren’t fun. The parts that aren’t fun are trying to get the best medical team to help you and to help Max. I think one of the most helpful parts of the books is when you talk about how you decided on your medical team and the questions you listed.
What are some questions that parents could ask to make a determination if a doctor is the right one to work with them and their child?
Kerry Brooks: I look at it like this because, the doctors have gone to medical school, they have a vast amount of qualification and information, that a typical parent who didn’t study medicine would not have. So, for me personally when I look for a doctor, you have to be able to break it down to me in the most simplistic terms there are, so I can understand exactly what is going on with myself. I need it simple. I need to know also what knowledge you have about autism?
Do you have any certification? Do you have any training? Have you worked with families in the past who have someone on the spectrum, and what are your protocols? Although there is no cure for autism, there are many stories out there that kids who were diagnosed with autism are living typical, healthy lives, and living on their own. So, what are your protocols for helping our child to reach his full potential?
And if they not in line with what we are looking for, I am looking for another doctor. So you have to find the best doctor for you, just like you have to find the best teacher for yourself, and the right therapist–anyone that’s helping you to develop your child, helping you to get the way you want to be. You have to see, is it in line with what you want for you and your family?
Drew Appelbaum: Going back to techniques, can you talk about the importance and system of routines you use with Max?
Kerry Brooks: One thing that I noticed about our son is that he was very methodical in things that he would do. I remember driving home one day with him in the back seat, and he was very young, and I took a different route to go home, and he started kicking the back of the seat, and just getting agitated. I asked, “What’s wrong? What’s wrong?” And he was trying to mumble a few words and say something, but he didn’t see the house, because I had gone a different way.
I said, “No, no here’s the house, here is the home right here.” And he looked up, he saw it, and he immediately calmed down. I said earlier that he would line up his toys, so I noticed that he was very methodical. So we used that as having a routine as number one, we started out when he was younger, just putting his toys away, and explaining it to him, “Listen, once you put your toys away, you will know exactly where there are when you come to look for them again.”
We started with just the basic things, of let’s put our toys away so we can find them when we want them next time. We used that, from putting toys away, to when he enrolled in school to doing homework. “Hey, let’s go over our homework right after school, and then we can play, and then we can look over it again before we go to bed.” We started putting these routines in place that he easily adapted to because most kids on the spectrum do like routine.
We would do a bath at a certain time, and we would learn a little bit while he was in the bathtub. We had toys in the bathtub, and we would sing songs, and he got used to us singing different songs together and just being silly. So, we had these things in place where he got used to them and they became a part of his life. He expected it, and he also benefited from it.
Drew Appelbaum: Do you think those routines helped you as a parent as well?
Kerry Brooks: Absolutely, without a doubt, because I am the type of person that I like to have a plan but also I am very flexible. I can sometimes go on the fly, but by having these routines in place, he has expectations, and I have expectations. What I would do, because I had a very busy work week, I would schedule when I could take him to the park, and what we were going to do at the park. I wanted to make sure that I got my time in with him.
I didn’t want to say, “Well, I didn’t get to do it today, I will do it tomorrow.” Then tomorrow came and I didn’t get to do it again. No, I put it in my journal, in my notes, “Today 6:00, we are taking the wagon, we are going to the park, we are taking the basketball. We’re going to do the monkey bars, we are going to do basketball. We are going to run around,” and that is exactly what we would do. We are going to come back, and we are going to have something to eat. We’re going to take a bath, we’re going to read a book, and it is time for bed.
These are the things that I put in place to help. Not only did he get quality time with me, but I also got quality time with him–one-on-one quality time with him. He learned more about me, I learned more about him, because I planned it in my day. I wrote it in my journal. I got to learn about him and understand what I could do even better to help him. That was a big key as well.
Drew Appelbaum: Your book is called Autism 2 Awesome but that is also the name of a company you started, where you teach how to respond to a crisis as opposed to reacting. Tell us about what the mission of the company is and how everything is going there?
Kerry Brooks: The mission of the company is simple. I want to help families who have someone on the spectrum. Help the family and help the child reach their full potential. Whatever that looks like at the end of the day, because every child is different. Every child could progress differently but I want to help them through their journey, from having a child diagnosed with autism, and having them understand some of the things that we did that they can do and maybe it will help their child.
Even if it doesn’t help, they can start building the foundation of, “This didn’t work but it made me think of something else that I could do.” That is the thing, do not be afraid to try something because you feel that it won’t work, because it may help you understand what you should be trying. Along the way, we tried a lot of things that didn’t work. What I am trying to do is condense what worked for us, and share it with other people and, hopefully, many of the strategies in the book will work for them.
Drew Appelbaum: One of the other strategies that you have is the SIT techniques, the Special Intervention Training techniques. Can you describe those for us?
Kerry Brooks: There’s no cure for anyone who is diagnosed with autism, but experts do agree that early intervention is key when it comes to helping someone on the spectrum to progress and to be successful. So, one of the things is being proactive, reaching out early on, and getting involved, and educating yourself about your child.
The most important thing I tell people is, “Get a diagnose early.” If you have questions, if you have concerns about your child, get them to the doctor and if it is autism, get a diagnosis, and start putting things in place early. Be proactive because, along the way, the system sometimes can be bureaucratic when you have to go on the waiting list like we did, in order to receive therapies in our home.
So, you can be proactive, start researching, and joining support groups, which is huge, because some people are further along the journey than you are. So, they might be able to help you along the way.
Drew Appelbaum: So Kerry, first I want to say that writing a book is no joke, so first of all, congratulations, and thank you for helping and educating others through this medium. Just one last question. At the end of each chapter, you list do’s and don’ts and if you have to pick the most important do’s and don’ts right now, what would they be?
Kerry Brooks: First of all, thank you for having me on the show, I really appreciate it. There are quite a few do’s and don’ts in the book.
Take Action
Drew Appelbaum: There are a lot.
Kerry Brooks: I think a lot of people become overwhelmed when looking at what to do and where to get started, so I will look at two of them.
Number one is to decide. Decide on what plan of action you are going to take, decide on who you want to help you, and decide on how you want your future to look. Decide, make a decision, and get started. Make a decision and get started.
The second one is never give up. Never ever, ever give up. For our children, we are the biggest advocate, our children are dependent on us, and we do have the potential to shape their future. No one can tell you the potential of your child, simply because of a diagnosis. If you go and put the work in, if you go and make a commitment to helping your child, helping your family to be the best they can be, to reach their highest potential, whatever it looks like at the end of the day, no one can tell you what that looks like when you go and make a commitment and put the work in, so never give up.
A label doesn’t define any of us, and it definitely doesn’t define our children’s lives when they are diagnosed at two, three, four, or five. We put the work in, we don’t know what it will look like when they are 18, what they may grow up to invent, what they may grow up to create. You just never know. Every day, keep putting the work in, keep learning, keeping putting the work in. Never ever give up.
Drew Appelbaum: Kerry, this has truly been inspiring and a pleasure, and I am really excited for people to check out this book. Everyone, the book is called, Autism 2 Awesome, and two is the number 2. You can find it on Amazon and, besides checking out the book, Kerry, where can people find you? Do you have an online community built around these ideas or a website?
Kerry Brooks: Yes, I do. We have a website at www.autism2awesome.com and they also can follow us on Twitter, they can follow us on Facebook, and they can subscribe to our YouTube channel under the same name, Autism 2 Awesome.
Drew Appelbaum: Great, thank you so much, Kerry. Thanks for coming on the show.
Kerry Brooks: Thank you for having me. I really appreciate it, thank you.