WHO IS TEAM LUKE NAMED AFTER?
"Our son Luke. He was diagnosed with autism just after his third birthday. That was in July and in August of that year (2011), we were notified by my girlfriend, Shauna, that there was an autism walk. So we jumped on board and came up with 'Team Luke, Walk to Talk'. He had starting walking at that point but wasn't talking yet, so that's how we came up with the walk to talk."
HOW DID YOU FIRST LEARN THAT LUKE WAS AUTISTIC?
"We knew early on that he was developmentally delayed, just after his first birthday, he stopped baby babble. He was always doing "bababa", "dadada". When we came back from a vacation, and I know this is controversial, he had his shots. After that, we didn't notice until probably a couple of months later, that it stopped. He was only doing the army crawl, he wasn't cruising, not bringing himself up onto things. We noticed his grasp was real weak and all that. I kept telling our pediatrician "I just feel like he's different". He kept saying "Mom, all kids are different. He's just not on the same page as your other kids." Finally, he said to me "Ok, if you wanna go down, I have a friend that's with the neurology department down at CHOP. You can go down, he'll do a whole evaluation on him." We went down there and they tagged him as having global developmental delay and we got early intervention involved right away. He was getting therapy at home three times a week. And we were seeing a developmental pediatrician down at CHOP. As time went on that's how they came up with the autism diagnosis."
YOU MENTIONED HIM GETTING SHOTS AND IT BEING CONTROVERSIAL. DO YOU BELIEVE THAT'S WHAT CAUSED HIS AUTISM?
"It hit something for me. I was never on board with that. I never really looked into it because Luke was our first kid in the whole family that it really touched home with. I have an older nephew who has Aspergers, and that was our only little inkling into this world. Then once we kind of looked into that, and I was reading up on it, and the word autism was introduced to it, that's when we realized that was around his first year shots and could be true."
"There's all kinds of research that the money goes towards. Getting information to people. Coincidentally, about a week after Luke's accident, we were still in the PICU at CHOP and I got an email. It was from Autism Speaks on wandering. I had heard something about that, but never really read up on it, or the severity of it. And I got this while we were at the hospital. And I feel like if this information was put out more often and was more well known, his accident may not have happened."
WHAT ACCIDENT ARE YOU REFERRING TO? AND WHAT LED UP TO IT?
"We were getting all the therapies in place, getting Luke into school, early intervention stuff and he was progressing wonderfully. He was seeing a speech therapist, we were starting to get some words, he was making sounds and doing all the things a boy his age should do. He wasn't quite at that level yet, but he was walking, running, jumping, all these things he had to learn how to do. He couldn't jump for the longest time which is something you take for granted. You just don't realize. Just pulling open a door, he didn't realize he had the strength to open a door. Everyday when we would drop him off at school we would practice that. So we were finally seeing all these big steps. Then in August of 2012, my husband was home with Luke, he was watching tv, nobody else was home. Luke wandered to the front door, through the door, storm door, down six steps, into the yard that he had to open up a gate to get into, to the pool, went up another seven steps, opened up the pool gate which you had to put your hand over the gate to open up. He was always fascinated on spinning things like wheels and balls and all that stuff. There were always balls in our pool cause he would always throw them in from the yard into the pool. He would sit on the deck of the pool, when we were all in there with him, and spin the ball on the water and he would laugh hysterically. And I believe what happened was that he went to reach in to spin the ball and fell in. My husband found him, luckily. He was unresponsive and my husband did mouth to mouth on him and screamed for help to neighbors. Some neighbors heard his cry for help and came out. Our next door neighbor, Dan, drove them around the corner to the hospital ER. They worked on Luke immediately and tried to revive him four times, the fourth time finally worked. I got the phone call rushed to the ER and I just started singing to him all his favorite songs. I was just kneeling on the floor singing to him. CHOP had set up it's medivac to transport him by helicopter to CHOP. They were in the process of undoing all of Frankford's (ARIA Torresdale) equipment and hooking it up to their own equipment to prepare to be transported. I remember the one nurse that was on the helicopter telling me "just keep singing Mom. He hears you." I remember thinking "Ok, what else can I do." Because as a mother, I had to let all these people keep my son alive. They took him on the helicopter and we went by car cause they needed to have the extra staff on board with him. CHOP became our home for just under five months. We were in the PICU for about two to three weeks then went in to their impatient rehab department. Luke suffered brain damage, lost all full function of his body. He can't sit up or hold his head up or anything. But he is making great steps. He lost his vision, which has now been regained. He was really, really sick for a really long time. He's doing amazing. But a big thing for us, was because Luke was non verbal, he spoke with his face all the time. His eyes and expressions. That's how we communicated with him. That was the first time, ever, we had lost all that. When he didn't have vision or respond to our voices, wasn't able to look at us, give us a smile, and he was looking at the ceiling, there was a blank look on him...that was what was most difficult. At that point we were thinking we could deal with anything, the brain damage, the fact that he wasn't mobile anymore, we could deal with all that. But we needed to have that face back, we needed to have him smile and talk to us. His eyes twinkle when he talks. God has been working in little baby steps. Ever since this happened, I pray in little tiny steps. There were times I'd pray for him to be able to pee so he wouldn't have to be "cathed". And we're getting little, tiny steps back. I remember the doctor telling us there was no brain connection for his vision anymore. They told us to hang onto hope, and if it comes back, it can function. It's there, it's not damaged, it connected. It found it's way back. That's what has gotten us to this point now, two and a half years later. Now we can talk to him and he smiles at us, knows who we are. We get laughs, we see his eyes twinkle again. It's been a rough road.
I just put on my Facebook that this year, for the second year since the accident, that I was contemplating doing the autism walk again or not. It's hard. We have a lot going on here. Luke's one of five children in our house. It's busy. We had another traumatic thing happen this year with my older daughter. It's crazy here. I was thinking, "am I really gonna do this again?" It tugs at me. And I get people that start, around the end of summer, to send me messages and phone calls saying, "what are we doing for team Luke this year?" And I said, "I can't let anybody down. I have to do this!" This is amazing. All these people are in his corner. Autism touches so many families. You hear about it now more than ever. I wonder if it's our age? It's constant. So I thought that I can't ever NOT do it. It's such a good group of people that support us and support the cause that I feel like it's worth all the work, every year. We were able to raise close to $9000 this last year! Our first year, when we got the diagnosis and my girlfriend told me about the walk, that was in August of 2011 and the walk was in September, we raised $10000 that year. In one month! It was unbelievable! Every year we get sponsors. We have team Luke T-shirts. We sell the shirts and the money we raise we donate to autism. There's a friend that Luke is in school with, another autistic boy; a group including his mom and a couple of other moms that gathered together wanted to move away from Autism Speaks and see if they can make an impact somewhere more direct and not so broad as a big, giant organization. So they started doing their own little thing and I thought it was so touching. So last year, when we made all the money from the T-shirts, we gave $1000 each to 3 separate families anonymously. The rest we donated to Autism Speaks."
WHY DID YOU DECIDE TO DO THAT?
"I feel like they needed a pick me up. Each family that we picked weren't necessarily autism related. One family had a sick child. Another was just struggling. And another was a family that had just been through a rough road of one thing after another."
THAT'S PRETTY COOL TO HAVE ONE CHARITY HELPING OUT ANOTHER!
"It felt really good."
WHEN DOES THE WALK USUALLY TAKE PLACE?
"It was September our first year. October the following year. And this last year it was November. It was freezing cold. We got an email right after the walk that they're gonna try to move it back to September. Because there's so many families and especially for an autism walk, it's all children. It was so windy and cold. We couldn't actually do the walk physically. I brought him (Luke) but I was so nervous he would lose his breath from the wind, because of the condition that he's in right now. We went and stayed in the stadium but when it was time for the actual walk we couldn't do it. I was nervous to be pushing him in the stroller, the wind hitting him, and I couldn't see if he need suctioning. Hopefully next year it'll be back in September."
HAS LUKE BENEFITTED PERSONALLY BY AUTISM SPEAKS OR DO YOU FEEL IT'S JUST ONE OF THE MANY ORGANZIATIONS OUT THERE?
"I feel like it's the latter. Who knows if we didn't have this accident, maybe we could've utilized it more. We got involved at first, had a good year. But for the last two and a half years, this happened and set us back from the autism part of it and now are dealing with something different. But I do feel like, personally, every little thing has to help. We have to come up with something. We can't have all these kids struggling with this. Good parents are almost helpless. I remember there'd be times where Luke would act out in public and people would look at us like we didn't discipline our child. They didn't realize that he's just acting out. I can't snap him out of it. He'd throw himself on the ground, I'd try to pick him up. It was rare cause he was a happy kid all the time but it would happen occasionally. We'd see that (people reacting) and we'd be like "what can we do?" To look at Luke, you wouldn't have known there was anything wrong with him. In fact, one of our visits to the developmental pediatrician, she almost questioned his autism diagnosis cause his physical contact was so good. You could go up and hug him and most autistic kids don't wanna be touched. He was very affectionate and his eye contact was amazing. But there was something there. That's why they have that broad spectrum. Some have a little, some have severe disabilities because of it."
ARE PEOPLE ABLE TO JOIN YOUR TEAM?
"Yes. We're open to anybody joining our team. Go to "Team Luke Walk to Talk" on www.autismspeaks.org.
This year we're also actually thinking of doing a family fun day fundraiser. We're trying to pick out a place and do it maybe in August. Organize a big day with a moon bounce, face painting and all that, make it a family day and raise money doing something like that. I don't know how many people really want more team like shirts. (Laughter). We just wanted to try something fun and family oriented."