Lisa Pauley, 47, and David Pauley, 42, are parents to Davis, 8, and Zachary, 17. Ever since Davis was diagnosed with autism at age 2 and Lisa quit her job as a daycare owner to devote time to her son’s special needs, the family has struggled to make ends meet while paying for Davis’s therapies with one income.
What’s more, the family lives in Sandy, Utah, where insurance companies aren’t required to cover autism treatment. The Pauleys have had to make do with what Medicaid will cover and what they can afford out-of pocket, and Lisa estimates that their monthly cost for Davis’s autism treatment is more than $400. Today, Davis is nonverbal, still requires diapers, and recently developed epilepsy.
Why I originally stopped working.
When Davis was 3, we were able to enroll him in a special private school that was free for preschool aged kids. It was great, but the downside was parents were required to volunteer at least three hours a week. That doesn’t seem like a lot, but the more I saw what they were doing with him, the more I realized I needed to be able to replicate it at home. My husband and I talked a lot about it and we thought, well, we could be a one-income family for a short amount of time. So I gave up my job.
How it felt to give up my career.
I felt pretty helpless. I felt like I wasn’t contributing enough to the family, even though deep down I know I am. It took away a little bit of my identity, because I had worked since age 16. But I wouldn’t trade it for anything. Of course, there are those moments when you feel kind of deprived, but when you look at your children and you see what your sacrifices are doing for them, it’s worth it.
The sticker shock I felt after seeing the initial price tags.
I had no idea that a special-needs private school was going to cost $27,000 a year once Davis hit kindergarten age. I was blown away by the expense. Not that it wasn’t worth it, but the tuition didn’t even cover everything. It only paid for him to be at the school where they did ABA (Applied Behavior Analysis) therapy and one speech therapy session a week, which is wonderful, but it’s not enough. So on top of that, we still had to go out and find everything else our child needed: a speech therapist, an occupational therapist, etc. It was just insurmountable. A lot of my friends [with autistic children] were mortgaging their houses and taking out these big crazy loans.
The agony of having to opt out of treatments because of the cost.
There were many therapies that we wanted to try, but had to skip because we simply couldn’t afford them. We wanted to get Davis more speech therapy, some socialization classes, the list goes on and on. It might have helped, but we had to be realistic about our finances. And Davis has come a long way, but I really do think he could’ve made even greater strides, and made them probably a whole lot faster, if we’d had the funds for additional treatments.
How the financial strain has affected us.
One income just doesn’t cut the mustard with our family, and we became very stressed about the private school tuition. We just didn’t have $27,000 per year. But I didn’t want Davis to lose what he was getting from that school—I just couldn’t imagine him going into a public school. He’d be at the back of the room, or wandering the halls. So I would stay up late at night trying to figure out how we could manage to pay for this school that he needed so vitally. We eventually found another, more affordable school for him, but the experience put a huge amount of stress on me and my husband.
Still, we didn’t want to add to each other’s anxiety, so we kept a lot of worries bottled up, but that only made things worse. I guess we thought we were protecting each other, but it wasn’t healthy. It took a toll on our relationship, and ultimately, I ended up in the hospital with serious blood pressure issues. Then we couldn’t afford the blood pressure medication that I needed. Eventually, we got on Medicaid because we just weren’t making enough money. Since then, we’ve worked hard to keep our marriage strong.
The guilt we feel towards our non-autistic son.
My husband and I also have a wonderful child who is not on the autism spectrum. But as parents, we have to choose where our money goes, and most of it goes towards Davis. And that’s been really tough on Zachary, even though he totally adores his little brother. Zachary has had to make sacrifices—for example, David and I just haven’t been able to pay for a lot of his extracurricular activities. I can’t even tell you the kind of guilt that puts on you as a parent, because you don’t want any of your kids to feel ignored or neglected. You want to make sure you’re sharing your attention equally among your children, but no matter how hard you try, more of your attention does have to go to the child who’s dealing with a meltdown or a seizure.
One cost that really caught us by surprise.
Davis has a device that can speak for him that he’s learning how to use. If he wants a glass of milk, he can touch a button and it’ll say “I want a glass of milk.” It’s an amazing device that can do everything: It takes pictures, it communicates, it can turn off your home lights and your television sets. It has helped him at Cub Scouts and at church, but it’s also very, very expensive—close to $20,000. In order to get one for Davis, we had to go online and look for people who were selling them secondhand after a family member had passed away from Lou Gehrig’s disease.
Why we can’t take breaks.
My husband and I have taken one vacation out of all the years that Davis has been alive. It was wonderful and it was very much needed, but right now, with our finances, there’s none of that. There’s no break. Not that we want a break from our children, but we need a break from some of the stress.
My biggest worry for the future.
I’m an older mom, and I basically am responsible for 95 percent of Davis’s care, because my husband has to be the breadwinner. Davis really counts on me, so I’m worried about my health. My biggest fear is that something will happen to me, and then I don’t know what will happen to him. My older son adores Davis immensely, but I don’t want his life to be totally centered on taking care of someone else. That’s not what I hope for his future. My best hope is that eventually, Davis will progress enough that maybe he could live in some kind of a group home.
The silver lining to our struggles.
It’s been slow, but word of mouth and autism awareness is growing. If people take the time to get to know kids like Davis, they’ll see that they have so much to offer the community and the world. They’re not unproductive. Davis knows when people are hurting. If my husband and I have had a disagreement, he’ll go and get my husband, take him by the hand, and he’ll drag him to wherever I am. Then he’ll put our hands on top of each other. It is so sweet, and it is so smart. You can’t be upset or frustrated if this little person is looking at you like that. And I’ve seen him do it with friends and people at church. He brings out the best in everybody. If people can see that, they’ll see that need to help and protect these kids instead of just thinking they’re odd or useless.
What I want most from the state of Utah.
I’d love to see autism covered by insurance, just like any other health condition. The minute your insurance company finds out that you have a child with autism, they don’t want to cover you. I want the therapies that kids like Davis need to be part of that coverage. But we, along with other parents in Utah, are making progress. I think if we can get more regular citizens in Utah calling their representatives and letting their voices be heard, we’re going to get some changes made in the near future.
Do you have a child on the autism spectrum? For family resources, news on autism research, and even mobile apps designed to help, go to autismspeaks.org.