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Thomas (from left), Natalie and Nicholas Carelli
Courtesy Carelli family

Carelli embraces highs, lows of parenting autistic child

By John Hareas, for
Posted Apr 2 2012 2:45AM - Updated Apr 2 2012 4:19PM

The numbers are staggering and heart wrenching. One in 88 American children have some form of autism spectrum disorder, a 78 percent increase compared to 10 years ago according to a recent report by the Centers for Disease Control and Prevention. The breakdown: One in every 54 boys and one in 252 girls are autistic with the total number of children in the U.S. reaching 1 million.

As jarring as those numbers are, there is also a growing population of autistic adults in which a national plan is lacking of not only taking care of them but to also make them productive members of society.

While the statistics tell one part of the story, there is a human aspect of this growing epidemic that tells a more personal one. Tom Carelli, the NBA's Senior Vice President of Broadcasting, and his wife, Toni, are the proud parents of three children: Natalie, Thomas and Nicholas. Tom and Toni were thrust into the unknown world of autism in 2004 two years after Natalie was born.

Ten years ago, information on autism wasn't nearly as prevalent as it is today. Roadmap for treatments? No such thing. Tom and Toni learned by trial and error, often times in frustrating and confounding fashion, in finding the best therapists and services available for Natalie.

Now, 10 years later, autism awareness continues to rise, thanks in large part to Autism Speaks, a non-profit organization founded in 2005.

Carelli shared his story with on the advances of autism research and the programs offered, what still needs to be done and why parents must be their child's best advocates for the best possible chance of early intervention. What did know about autism before your daughter, Natalie, was diagnosed?

Tom Carelli: We had a nephew who is now 17 -- my wife's sister's son -- who was diagnosed with autism before my daughter Natalie was born, so we were very aware of it more than most families were at the time.

Natalie was born in 2002 and she was diagnosed in 2004 right around when she turned two. So we were aware of it and didn't have as much shock as perhaps as other families do when they first receive the news. However, it was still incredibly jarring to actually find out what we feared. What did you and your wife do when she was first diagnosed?

Tom Carelli: I think you try to get over the shock -- because we knew something -- we knew it's not curable. It's a matter of how it can be treatable. There is a very stark difference between the two. You have to come to grips with what's going to work and the problem is that no one tells you what's going to work because every single child on the spectrum has different symptoms and responds differently both to treatment, to therapy based on age, based on maturity and how it all changes.

You then try to figure out what services are available. What does she need the most? And we found that her basket of symptoms are vastly different than my nephew's despite the fact that they are first cousins and as a result, all facets would have to be treated differently -- academically, behaviorally, physically, emotionally -- she's a girl, he's a boy -- the numbers of boys who are autistic are staggering versus girls -- then and now. It's four times to one more prevalent for boys than girls.

So you then try and find what's going to work and where you can find the best places and you can't ever be satisfied. You have to trust your gut. You have to know what's going to be right for your child. You have to be your child's best advocate.

My wife, Toni, has done an unbelievable job, tirelessly trying to find the right mix of people, facilities, activities that will benefit Natalie and manage them. Like a manager manages a roster: what situations she can succeed in or not? It changes. How did you know what programs would work for Natalie?

Tom Carelli: When you're in it, you have no idea what's going to work. So you're completely going on, "Is she responding in it." We were fortunate to get into a program in Princeton, New Jersey called the Eden School provided her with ABA Therapy -- Applied Behavior Analysis Therapy -- which is very good for teaching autistic kids how to learn.

We looked at a couple of other facilities to determine whether she should be placed into a specific autistic facility on a full-time basis. We felt then and still believe she would benefit from being among typical children because she needed socialization. It's still a real challenge for her to communicate with her peers and to interact socially in a playground or a classroom. It's getting a lot better but she still has issues consistently communicating with people, so that's part of it.

We wanted to expose Natalie to good examples and she's responded to that. It's slow but she's definitely made noticeable progress.

I often joke with people, that you're really not into this yet until you fire your first therapist -- until you realize that it's not working. The person may mean well and may come highly recommended from other parents in the community but it's not working with Natalie for whatever reason. And other people who are really nice but even at a young age, even at two, three or four Natalie started realizing who she could push around. And then you may have a person tell you that they didn't get along well with a certain therapist for whatever reason yet your child is responding to that person the best.

By sheer persistence, my wife has made more contacts with people, tried all kinds of different things and connected with the community of children with autism in our area and everybody is very supportive. Everybody sort of knows everybody else, even if you may move on from one school to another, one facility to another, one activity to another. People will look out for each other: "Hey we found out about this or we talked to this person or did you find out about this activity? Or this is a good activity."

The information today is much more prevalent than in 2004. Everybody knows someone who has autism -- whether it's a family member or co-worker, neighbor, a schoolmate, someone else's children ... everybody knows someone.

Why are the autism statistics so high today? They're high because people know what to look for. With all due respect, I don't think the medical community in the early 2000s was prepared for the epidemic that are now facing. They had no idea how to diagnose these children because they are all so different. Now they know what it is. The groundbreaking, trail-blazing autistic doctors, the child pediatric neurologists, the ones who knew what they were talking about were so far ahead in their fields than the regional pediatrician that you visited and would say, "Ah, yeah, don't worry. Maybe she's just talking late."

No, you don't have time. If you're a parent and you have any sense that something is not right with your child, get on the internet, look it up, find out, talk to people and get yourself to a doctor and don't let them tell you what they think. You tell them what you think.

As a parent, you have to be aggressive. You have to be your child's best advocate because the most important thing that you heard then, you hear now, the earlier you can intervene and start the process of receiving therapy and services, the better chance you have to find out what's going to work for your child. And whittle it down to find out what exactly will work for your child in your situation. Whether you have sibling or don't have siblings, whether you have neighbors or don't have neighbors, whatever it is, every single one of them will be different. Autism Speaks is a relatively young organization, originating in 2005 yet has made an immediate impact in raising awareness, fundraising, science and advocacy efforts.

Tom Carelli: Austism Speaks has done a tremendous job in raising awareness. The Light It Up Blue campaign is great because it is so obvious. Thousands of buildings worldwide are turning their lights blue and all that does is prompt people to say, "Why are they doing that?"

Here's why they're doing it. They're doing it to raise awareness about this childhood epidemic around the world that knows no socio-economic bounds or classification. It's making people stop and notice, discuss and review, analyze, ask questions and prompt conversation. And so, new parents, young parents are going, "I think there is a problem. I wonder what it is?"

It's not like it's a secret. The Autism Speaks lapel pin is a conversation starter. Whether I'm in a plane or at a mall or in restaurant with my family, wherever, people ask, "What is that pin? And inevitably, someone knows someone who is impacted.

I ran into someone recently in the Denver airport who shared a story of how his son is in a school in Maryland and well things are going. They're doing this and they're doing that. Ok, that's sounds great. Sometimes that may correlate with what you're doing and sometimes it doesn't. But it provides a sense of community, a sense of connection for all of these parents or grandparents or neighbors or aunts or uncles or cousins to act and try to help.

The one thing I found out is that it's amazing how much you can get done when you ask for help or you ask for assistance or you ask for aid or whatever it may be. And people will say, "Sure."

My wife and I have been very fortunate to receive terrific assistance from the NBA in support of Autism Speaks on behalf of those of us who work at the NBA, it's a great thank you to NBA Commissioner David Stern and Kathy Behrens, the Executive Vice President of NBA Cares about what they've done in leading all of us in raising awareness with our broadcasters around the country who wear lapel pins and the coaches who do it also in support.

You have no idea what that means when someone says they saw a coach or a broadcaster wear the pin. It's time like that when you say to yourself, "You know, maybe I moved the ball just a little in raising awareness."

It's great to be able to have that sense of accomplishment that you did something. Maybe you prompted a parent to seek more information. That's what we can do because otherwise, it's day-to-day combat with Autism. Some days it wins and some days you fight to a draw and some days you feel victorious. When your child does something great whether it's their first hit in Little League or your daughter's dance recital, you feel really proud, really excited.

When Natalie was in a recital with the rest of the little 8 year-old girls two years ago, she performed as well as the rest of her peers. I was on the side of the stage and I was the only parent allowed backstage because I had to stay with her. I was hysterically crying. I couldn't even hold a camera. My wife and my mother in law and my boys were sitting in the front row and they were hysterical. Natalie was just like any of the other eight-year-old girls. That was unbelievable. That was absolutely incredible. I will never ever forget that. What are ways people can assist with autism, whether they are immediately impacted or not?

Tom Carelli: Everyone has some sort of connection to autism because everybody knows somebody who is connected to this. It may not be obvious but there are ways to help. If it's a neighbor you can ask, "Do you want me to watch your kids for an hour while you take Natalie to horseback riding today. I'll watch the boys."

The girls in Natalie's class are wonderful to her and to do a play date with her and have the other parents say, 'OK, that's cool." That's she just another regular little girl. If it's a family member, "What can I do to help you?" A financial donation to autism Speaks or to a local community group that is working with autistic children is another way to assist.

One of the other families in our community partnered with Yardley Mayfield soccer to start this program last year called Special Stars and it's for children with autism to learn how to play soccer for all ages. The local soccer club has their players visit to be the special pals to the children with autism.

On the first day, Natalie didn't want to go. And we went there and she met this girl named Molly, who was her special pal and every Sunday afternoon, Natalie couldn't wait to play soccer. Listen she's not going to play high school soccer but it was a great deal of fun for her and it was boys and girls and some younger than her and some older than her. This was something a mom and dad started and we all rallied around and Yardley Mayfield Soccer came through and delivered their players and their time and their field. And there are programs like that everywhere. Some are broader and deeper in the community and long standing and some ideas originate from someone's kitchen.

Whatever it is you could do to support autism awareness financially would be great but be a friend, too. It takes a lot. You have to be patient. And the parents have be patient with their own family members, neighbors. Be aware of it.

If you're a parent and you have a question or don't think something is right, ask, find out. Call the school, call your neighbors, look online, there are plenty of community resources available and that wasn't the case as recent as 2004. Now, you don't have to look as hard. There are plenty of things out there. You can contact Autism Speaks and they'll find someone in your region and try to get to a pediatric neurologist. And the problem you have there is that the wait takes forever to get an appointment. Because there are so many cases, to get an appointment takes upwards to six months.

And you can't wait. If you have a feeling there is something wrong and you're making an appointment and they tell you it will be six to eight months, you can't wait around for that appointment. You have to act now. Figure out what your child is in most in need of be it physical therapy, communication, speech therapy, occupational therapy, whatever it may be, don't wait six months for the appointment.

Because the worst thing that you did was give your child a little extra attention. A little extra speech therapy or gave them some extra attention or time. If you're fortunate enough that you get that appointment and they say, "You know what, your son or daughter is OK." You say, "Whew. OK, great." So maybe they are a little ahead of someone in physical therapy or occupational therapy, that's not a terrible thing. What would be a terrible thing is if you waited around the six months for the appointment and then realized you lost six months that you'll never get back on the early intervention.

Act. The amount of efforts you have described in seeking information as well as tending to Natalie on a day-to-day basis are quite intensive. It is quite a toll not only for adults for the entire family.

Tom Carelli: There are parts of it that are real difficult because you have to explain to little boys how you have to balance the attention you give her versus the attention they have to get it and why it's different and explain to them why she's different . We are very upfront with Thomas and Nicholas about Natalie because we need them to be supportive and helpful and they are. They're great in trying to keep an eye on her and realize that even though she's their big sister, they have to keep an eye out for her.

It's exhausting some days because she can't communicate sometimes as clearly or as obviously as something that hurts or if something is specifically bothering her. How is school? You may not get so and so was pushing me on the playground. Who did you have lunch with today? You have to try and really dig because those simple sort of questions are difficult for her to give you those specific answers. So you have to try and figure that out.

It's always a challenge for a parent to balance his/her time with your child. We don't know what is going to be next for her. We don't know what she is going to respond to.

This just adds a layer to that -- a pretty big layer some days. What has this experience taught you about yourself?

Tom Carelli: Natalie is our first child so she is naturally spoiled by being our first child. It puts things into perspective and everything else. The perspective you gain from going through it and the joy you have when something goes really well far exceeds your expectations.

You have to balance the incredible patience you have to have and then realize that some days she's just a little kid and that can be a joyous day or also can be an eye-opening day. Some days you're like, "that's good, that's a normal thing for a 10-year-old girl to do." So you revel in that more than if it was a normal 10-year-old girl. It's bigger for her. You enjoy those moments.

Then there are some days where you like, "What are we going to do when she gets older?" I'm 50 years old and what am I going to do when I get older. Depending on the day, that keeps us up at night. That is a bigger fear than most parents fear about the future of their children when they're not there. Every parent has that I believe. I have that fear about my boys. Will they all be able to handle themselves?

You look at any autism meeting seminar agendas today and it's a bigger and bigger part of the agendas of what to do. No one knows. No one knows how the government and communities are going to treat it and how they are going to provide for it, if they are going to provide for it and what we as parents are going to have to do to figure out how to care for our children as they get older and as we get older.

What has really touched my wife and I throughout this journey is how well our community in Yardley, Pa. fully supports Natalie. The other children in her class always embrace her and include her in parties and help her at school activities. We have been blessed to have a great one-to-one aide and teacher this year as well as the full support of the principal at her school. All these people have combined to help Natalie this school year both academically and socially as she is fully included in her third grade class.

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