“Why haven’t I had a play date for a year?” asked 9-year-old Kate, who sniffs her blankie whenever she’s feeling anxious. As much as it hurt to hear her eldest child—a spitting image of her younger self with long dirty-blond locks—pose the heart-wrenching question, Laura Jones, 46, knew too well the hard answer. Though she shared her daughter’s sentiment of feeling alone and isolated in their hometown of Lambertville, N.J., it has been that way pretty much since she had three toddlers under age 3 who didn’t quite fit in with the other neighborhood kids.
All three of Laura’s little ones—Kate, 8-year-old Jack, and 6-year-old Maxx—have varying degrees of high-functioning autism, a complex development disability that took years of talking to teachers and doctors and putting her babies through countless evaluations and therapy sessions (up to four days a week) to confirm. “On paper, they all have the same thing, but their behaviors are so different. Each of their brains is wired in a unique way. Autism is not always so in-your-face clear,” explains Laura, who first noticed something was off in Jack before catching on about the others.
“One day, I called the local hospital helpline and just started bawling, ‘I don’t know what’s wrong with my child. He won’t stop crying. A 9-month-old shouldn’t be this sad!’” exclaimed Laura, who works as a part-time freelance journalist and has an Emmy on her shelf for her work in 2004 as a local talk show host. Jack seemed particularly miserable whenever he was in the car. That wasn’t the only red flag, she notes. “He didn’t make eye contact and he wasn’t speaking.”
The First to Know
Laura isn’t the first mom to pick up the early warning signs before the pediatrician. “Parents don’t need to be up to date in autism research to know that they should be concerned when their baby hasn’t smiled or shown any joyful expressions within the first 6 months. It’s instinctive and intuitive to worry if your baby isn’t hitting certain milestones, like babbling before turning a year old,” says
Olga Goldfarb, M.D., director of the Autism Program, part of the Capital Institute for Neurosciences.
Having a sinking feeling and doing something about it, however, are two different things. “The trouble parents have is to listen to observe the warning signs and not dismiss them, telling themselves, ‘Oh, they’ll outgrow that,’” Goldfarb says. Laura says she did this with Kate, who always flapped her hands up and down when she was excited or upset (a textbook sign of autism, her sister-in-law had warned). Though there are plenty of mandatory checkups at the doctor’s office during the baby’s first year, Goldfarb cautions it’s important to stay on top of the developmental screenings if your child isn’t gesturing, pointing, waving, reacting, and engaging within 12 months.
Two years into treating Jack, Laura watched her youngest child, Maxx, then 2, become more aggressive and aloof. By the time he entered preschool, Maxx’s behavior had worsened. “He couldn’t connect with his peers, his speech was hard to understand, he couldn’t hold a pencil, he didn’t recognize numbers, and he was so sad,” she says. Completely consumed with concern over her two boys, Laura knew that Kate was having her own troubles in school but didn’t make the connection to autism.
“Kate was going into third grade, and she couldn’t read, write, or do math. I couldn’t believe I missed it,” she laments. Had she (or doctors and teachers) caught Kate’s issues earlier, she might have better understood what Jack and Maxx needed. “Having a previous child with autism increases the second child’s risk by 19 percent. If you have a third child, the risk continues to significantly increase,” Goldfarb says. Diagnosing a child on the autism spectrum, however, can be very complicated. “Autism isn’t like Down syndrome or diabetes—the condition is not so straightforward. There’s no brain scan for it. No blood test. It’s purely clinical. You look at the child, get their history, play, and see what is missing and what is there,” Goldfarb explains of the condition that affects 1 in 68 children, making it the most common neurodevelopmental disability in the United States.
Still, Laura blames herself for not seeing obvious cues, minimizing the fact that she has been the primary caregiver, as her husband’s job entails extensive travel and time away from the home. And while she talks daily with her loving parents, they live in Florida, so they are not as accessible as they’d like to be. And with nasty notes sent to Laura about her kids and the nickname “Crazy Mom” whispered behind her back as she advocates for them, Laura has few options of places and people to turn to for support.
“I’ve just come to terms that there are going to be times when I’ll go three days without brushing my teeth,” says Laura, who is determined to not let autism rule her household. “Kate goes to singing lessons, Jack goes to baseball, and Maxx goes to swimming. I make sure my kids are living somewhat normal lives,” she says proudly.
“I don’t always hold it together. Occasionally, I lose it over something stupid,” she admits, specifically recalling an outburst at a Cub Scout meeting where she stormed out of a banquet in frustration when a video she worked on didn’t come together as planned. “Deep down I knew I was so upset because there’s too much pressure on me. I don’t resent my kids, but it is a bummer,” she confesses. “It’s not just my problem. Everyone is frustrated—teachers, administrators, my community. There has to be a better way.”
Laura is Not Alone
All good moms deserve applause for what they do for their kids, but in Laura’s case and others like hers, a daily standing ovation may be in order. “Research shows the stress levels of autism moms is right up there with combat soldiers,” says Liz Bell, a member of the Autism Speaks Family Services Committee and a representative on the New Jersey Governor’s Council for Medical Research and Treatment for Autism. “My heart breaks for Laura,” empathizes Bell, who spoke to Real Woman from the perspective of a mom who has a 20-year-old son with autism (they appeared together on “ABC News” to discuss adult autism in August 2010). Bell’s husband, Peter, is also a prominent autism advocate and the newly appointed president and CEO of Eden Autism Services, a Princeton-based leading autism service provider for the last 39 years (see sidebar).
Goldfarb echoes Bell’s sympathetic sentiment: “I understand the frustration,” she says. “It’s extremely difficult to deal with just one child with autism.” One way to make it a little more tolerable is to connect with parents who are in a similar position, facing their own familial battles with the seemingly catchall cognitive condition that now includes Asperger’s.
In addition to doing research online (see box for a list of links where to start), you should also find ways to interact with people within the autism community. “Webinars and information-sharing events are a great place to network with parents, who may share stories, strategies as well as local resources,” Bell advises. “Even if you don’t necessarily learn something new from the speaker at the event, you may come across parents who have the inside track about nearby support programs or specialists.” And it may also give you a chance to vent to someone who understands and won’t judge you or your babies.
Having realistic goals for your children is also important and not easy to swallow. “It doesn’t matter to me what my daughter’s aspirations are. If she can read, write, and is happy and has reached her potential, that’s all I care about. But I don’t know what her potential is,” Laura says. Which is why it’s crucial for her to attend these events to learn from other families how to have appropriate expectations for your child to grow, learn and behave, Bell says. “Other parents might know good approaches to getting your child there or introduce you to a better practitioner or someone who can help them develop certain skills,” she adds.
As much as you need help getting through the difficult times, you also may need some assistance in rejoicing the good times, too. “Celebrating strengths and successes whenever they come is so important to help your family recover from the things that are more challenging,” Bell says. “You have to learn to take credit for even the smallest hard-fought victories. If you don’t, it’s easy to get stuck on all the things that will bring you down.” It’s not just about high-fiving your child for doing something right, but also taking a moment to pat yourself on the back, too. Over time, these little affirmations will build much-needed resiliency, which is essential for moving forward.
Above all, parents like Laura can’t afford to lose themselves to autism. Sure, being selfless comes with the territory when you cross over into parenthood, but when you have a child (or three!) with special needs, there are many more personal sacrifices to make. “Make time for yourself and your marriage,” Bell advises. “Find that date night, or take that yoga class while the kids are at school. Otherwise, there’s definitely an opportunity to build resentment,” says Bell, whose guilty time-consuming pleasure is blow drying her hair. For Laura that might mean one day returning to TV as a talk show host or morning news anchor. But for now, all she wants is “to have a good day—and maybe clear the dishes.”