This past June, the Lack family of Tempe, Arizona, joined dozens of extended family members on an Autism on the Seas-staffed Disney Wonder Cruise to Alaska. Their adventure was filled with surprises and adventure, including one-on-one time with Mr. Mickey Mouse, a helicopter ride, and dog sledding.
WATCH our interview with Rachel Lack, mom to Henry, documentary filmmaker, and creator of the new docu-series, "Across the Spectrum"
AotS: We’re intrigued with your story, not only from a guest perspective and your vacation with us, but also what you're currently working on professionally as a documentary filmmaker. I think folks who listen to us would really find it interesting. Why don't you tell us a little bit about your Across the Spectrum project?
Rachel Lack: As a filmmaker, when my son was diagnosed with autism almost four years ago, I was looking for documentaries and there wasn't really a lot out there about what happened right at the beginning when your child is first diagnosed. So, I thought, "I need to film this, and I need to film this for other people so I can help other people as I would have wanted to have been helped." When you get the diagnosis, a lot of times the doctors don't tell you anything other than, "Your child has Autism Spectrum Disorder," and maybe offers a few pamphlets. They don't really tell you what to do afterward. You're kind of hit with this tornado of emotion and helplessness.
I turned to my camera, and I filmed myself throughout. Especially the first year, I filmed myself a lot talking about how I was feeling and crying a lot, because that's what you do, especially in the beginning. But I wanted to also show people that it's not a death sentence. It gets better as it goes on. There's help. So I filmed myself, and I found four other families in the Phoenix area. I live in Tempe, Arizona. We are following five kids in Arizona. I've been skyping with three families in Massachusetts. We're following these eight kids, from the time they are diagnosed through adulthood, because it doesn't end when the kids are adults. It's going to be a long series. I'm learning a lot. We're almost four years into this.
Aots: Just so folks understand how long you've been doing this, your son, Henry, who's on the spectrum, is six years old now. He was diagnosed when he was two years old. Correct?
Rachel Lack: Yeah. Almost three. So he was diagnosed on October 14th, 2014. So two months from four years, and he'll be seven in November.
AotS: If folks want to just check in to keep track of your progress, particularly if you end up streaming your program on Netflix or some of the other streaming outlets like that, do you have a website?
Rachel Lack: Yeah. Right now our production company is Purling Place Productions, and the website is purlingplace.com. Right now we're still working on that, because we are starting the first season of editing. It took me a few years to figure out what direction I wanted to take with this. First, it was going to be a documentary, and then I realized how much information there is. It can't be just one documentary. I realized that it needs to be a series.
As I was filming these kids, I was like, "We need to film them throughout their whole," ... and when I met these families, I said, "We might be filming you guys till the kids are passed 18." And everyone was on board. It's great. I've been filming updates every six months with the kids. The ones in Phoenix we do some play dates with the kids. We've got a lot of footage of the kids together playing, parallel playing.
AotS: Yeah. There's a 360-degree view of every aspect from the parents' perspective, through the child's eyes. I think that's wonderful. I wish you luck with that. Okay. Now we want to talk about your vacation. You went to Alaska, right?
Rachel Lack: Yes.
AotS: Back in June? And you went with your parents, which would be Henry's grandparents. Right? You were celebrating their 50th anniversary?
Rachel Lack: Their 50th anniversary. Yes, and my three sisters came and their families. Henry was the only autistic child. My niece and nephew stayed with Henry and played with the AotS staff – it was great. Our experience was a little different than I think the average family would have, because we were the only family with an autistic child. We had two team members for Henry, basically, and then my niece and nephew. But they were really there for Henry to make sure Henry was okay. It was amazing. And Henry bonded with both Sandy and Jamie right away.
AotS: How did you initially find out about Autism on the Seas?
Rachel Lack: From doing the documentary I have become really involved in the community. I think from a Facebook group somebody posted about Autism on the Seas a couple of years ago. I thought it was really cool, and I started following the page. When my parents first told me about the cruise, they came to me first, because they wanted to make sure I was okay with Henry being on a cruise, being non-verbal. Since I knew about Autism on the Seas already. I said, "That's perfect. I know a company that we can contact that will help us." I just contacted them right away.
AotS: Tell me a little bit about Henry. Did you have any kind of concerns before taking the trip?
Rachel Lack: Yes. A lot of concerns. We have flown with Henry a lot, and we travel with him. I grew up in Toronto, Canada, so we go back and forth in the summer to Toronto, but we'd never been on a huge ship like this. I don't even think Henry had seen a ship. He had seen a ship on television, but he'd never seen one in person. We had no idea how he was going to be on the cruise, how he was going to react. You're nervous about large crowds. You're nervous about trying to get on the ship. That's the first thing that you worry about is the crowds getting on the ship, the waiting. They don't wait.
Henry loves trains. He will wait in line for a train, because he knows he's getting on the train. Anything else, he doesn't understand what he's waiting for. So he's not going to wait. There's a lot going on in your head as you book these trips, and you're like, "What did I just do?" But Autism on the Seas was amazing. Sandy was our team leader, and she contacted me a month before. Three weeks before we had a phone call. We talked for an hour. She had been on the Disney Wonder before, so she knew the ship and she knew Disney. Disney's a little different than Royal Caribbean, because they don't have the connection that Royal Caribbean does. But we had an amazing trip.
AotS: Tell me about some of the highlights with regards to activities on the ship. Did Henry do anything different that surprised you? Did he get involved in things that he may not have normally taken part in?
Rachel Lack: Everything surprised us about this. From the minute we stepped on, Autism on the Seas was there right away when we got there. They got us right through the lines. You see Team Orange, and you're like, "Yeah." They're right there in Orange. They had orange flags and they got us right on the boat. It only took about a half an hour for the whole thing.
We weren't sure about how he was going to be with the characters, because on the cruise they have got all the Disney characters. Right away Henry saw Mickey and ran to him. Henry tried to grab his nose, so Mickey was then touching his nose, then Henry was touching Mickey's nose. They were so great with him the whole time. Any of the characters that we could meet we would go and meet, even the characters he didn't know. Captain Hook? He'd never seen Peter Pan, but he gave Captain Hook a high five. It was amazing. So we were like, "Okay. We gotta go to Disneyland now."
He didn't go on the waterslide, but he loved the pool. One of the excursions that he absolutely loved that we were a little worried about, we knew he would have fun, but we weren't sure was a helicopter trip to a glacier. Then we went dog sledding on the glacier.
We had to practice with headphones, because he doesn't like anything on his head. So we practiced for like three months before the trip having him wear headphones. And he was great. I think he was so excited to be on the helicopter.
We weren't sure what he would be like with the dogs, because we have a cat, and we don't have a dog. He just absolutely loved the sled dogs. It was the best excursion that we could have ever done.
AotS: I'm going to go out on a limb here and assume that having a child on the spectrum, you probably don't get to go out and have me time or alone time with your husband, right? Did you get to enjoy that on the ship? Did you take advantage of the respite?
Rachel Lack: Oh yes. We did. We had about three hours of respite a day when we were sailing. Then on port days, we had one to two hours at night. It was great. They had movies on the boat. I think we went to see Solo, my husband and I. I was able to spend time with my older cousin, my older niece and nephew who are 16 and 13. That was great. Because there were so many of us we could do that. The respite was amazing. You felt like you were a normal family again. You could actually sit and relax for an hour, and you know the people are great. People know that you can't just leave your kid. If you go to a resort or something you can't just leave them in childcare. You can't just leave them with anybody, especially a non-verbal child who can't tell you when something’s wrong. But you feel so comfortable. Henry just loved the staff from the very beginning. Henry had a connection with Sandy and Jamie. It was great. We felt very comfortable. And my niece loved going there too. She loved going with them.
AotS: What advice would you give other families who may be thinking of an Autism on the Seas vacation?
Rachel Lack: You're going to be nervous, but know that you've got these friendly faces that are going to meet you right at the beginning. They are going to take care of you and your child all the way through. They took care of our whole family, not just Henry and Steve and I. They took care of everybody that booked with them. I know you're hesitant to book it, but It's worth it just to get on and off the boat first. That was my worry. Too many people and the meltdowns that might happen. We had no idea how he was going to react. Having these friendly faces right there to greet you at the beginning, because you're stressed -- It's worth it.
You're going to have a great time. Just know that there are people that book it, and then they book immediately the next trip afterward, and there's a reason for that, because you feel relaxed, the kids have fun, and you have fun.