No one understands the frustrations of parenting a child with special needs better than Doug and Patsy Arnold. Faced with one brick wall after another in advocating for their son, Brent*, who has autism, the couple were determined to find ways to work in, out and around a system Doug claims “is designed to run people off, to frustrate them.”
The couple have made little secret about the fact that they aren’t fans of the “system,” and their sentiments are echoed by area parents.
The Arnolds, hoping to impart a little of what they’ve learned along their own journey founded Texas Special Kids (https://txspecialkids.org). They are also the authors of Called Parenting: Creative Interventions for Special Needs Homeschooling. They are not therapists—just parents who have backgrounds in education and a passion for information.
Doug is a special education teacher in Mansfield. Patsy taught high school Spanish until she decided to stay home with the kids when her oldest son was 5 and she was expecting Brent. At the time, they simply wanted to spend more time with their oldest, knowing they had the skills to home-school him. After Brent was born and diagnosed with autism, they set out on a journey to provide for themselves and for their children what the system couldn’t—or wouldn’t—provide. They now have three kids, ages 17, 14 and 9, and when people ask why they home-school, Doug says with a chuckle that it’s because he’s a public school teacher.
It was through their work with the Texas Home School Coalition that they began connecting with other parents who were home-schooling their kids with special needs. Seven years ago, Patsy sat in a corner at a state convention, surrounded by crying, frustrated parents who were overwhelmed with their situation. She left that conference with a vision that became Texas Special Kids and continued that vision with the publishing of their book, which was released in the summer of 2009.
“We felt like we were being called to do something bigger with the information we had,” she says. “Even though our initial movement was within the realm of home schooling, we knew we had the capacity to do other things with that information besides just work with home-schooling parents.”
The Walls Come Tumbling Down
Through their work with Texas Special Kids, the Arnolds have seen a rapid increase in special education families fleeing the public school system—mainly because it is not adequately serving kids. But the school system isn’t the only system parents need help navigating. And what parents like the Arnolds are doing is even more vital in Texas than elsewhere, according to Patty Geisinger, co-founder of the Austin-based Texas Parent to Parent (www.txp2p.org), a nonprofit organization that connects and supports parents of children with special needs. Texas ranks 50th in the nation in spending for residential and community services for people of all ages with developmental disabilities, according to the 2008 State of the States in Developmental Disabilities. The Arnolds describe DADS (the Texas Department of Aging and Disabilities, formerly MHMR) as a big toy store with no batteries—lots of listed services with long waiting lists because of a lack of funding.
“Our whole goal is to teach self-advocacy to parents,” says Geisinger, whose 19-year-old daughter, Jessica, has hypoxic encephalopathy, brain damage caused by a lack of oxygen when she stopped breathing at 5 weeks old. “Our goal is to educate as many parents as we can and have them start educating parents in other communities.”
Geisinger began her advocacy work after she was able to eke out a little normalcy and energy in her own life. Likewise, Patsy spent many years primarily as Brent’s mother, caregiver and caseworker. She estimates she spent three full days each month simply making phone calls that related to the services Brent had or needed to have; and that doesn’t include the time spent at appointments and therapies related to his treatments. Managing Brent’s life is easier now that he’s older, she says. Both moms understand that such stress is oftentimes why parents have difficulty advocating and working the system for their children. Fighting battles and researching options doesn’t make it to the top of the list because feeding their child and doing the laundry must come first.
Brent was highly symptomatic—which translates to high maintenance in everyday life—when he was young. Still, the couple carved out time to educate themselves on the options. For example, although Brent has never attended public school, he has taken advantages of services through the public school. At their first Individualized Education Program (IEP) meeting—the first of many battles with the system—school officials argued they could not provide any services if Brent wasn’t in the public preschool program for children with special needs. After a 10-day formal recess, school officials realized the Arnolds were correct. Not only did Brent receive the speech therapy to which he was entitled, but also the Arnolds fought, successfully, to get him one-on-one speech therapy instead of group therapy.
“We were determined we were going to do everything we could,” Patsy says. “People would say, ‘Have you heard about this?’ and we’d research it. We’d just chase every option that we could find. Part of it was the fact that we were outside the public school system, and we knew that we had a heavier responsibility in providing for his needs. We couldn’t just drop him off at the school at 8 a.m. and expect them to do everything until we picked him up at 3. Because we sensed that higher level of responsibility, we did a lot more.”
And the Arnolds have considered it their “calling” to share what they’ve learned with other parents. If they had to read 20 books to figure something out, they’ll point you to the one that was most helpful. Understanding firsthand which brick walls parents in similar shoes will encounter, they’ve armed themselves with knowledge, and are now helping other parents to bring the walls down one brick at a time.
Kissing & Telling (What the Arnolds Want You to Know)
Through their nonprofit organization, blog and book, the Arnolds share what they’ve learned along the way so other parents don’t have to reinvent the wheel. Here are the things they want you to know:
1. Know your rights. The No. 1 mistake parents make is not knowing their rights. A school system can’t deny your child what he or she is entitled to just because they do not have adequate funding. It is the district’s responsibility to find similar services outside the district on a contract basis—likewise for state and federally mandated programs. When Brent’s services through CLASS (Community Living Assistance and Support Services) were cut too deeply for funding reasons, the Arnolds fought back and had the services reinstated.
“We just didn’t give in,” Patsy says. “We knew our rights. We knew the law. When they said they didn’t have enough staff to do that, we said, ‘Would you repeat for our tape recorder that you’re not going to follow the law because it isn’t convenient?’ We live in a society that accepts the word of somebody in a position of authority. People don’t necessarily do the research to know what their rights are.”
2. Advocate … respectfully. “I think some parents do make the mistake of letting things get adversarial a lot more quickly than they should,” says Peggy Heinkel-Wolfe, a Denton mom whose son Sam has autism. Heinkel-Wolfe, the author of See Sam Run and a blog on the subject, lived in New York for the first year of her son’s life, a state with amazing services she wouldn’t find in subsequent homes in California or Texas. Making service providers afraid of you does your child a disservice, she says. “You want people to know you know what you’re doing and that they can’t mess with you. The best thing you can do is persuade everyone to be as bought into your child’s success as you are. Once you do that, lots of things happen because people try new things and are more flexible.”
3. Get on the waiting list. Find out what services are available and get on the waiting list—even if that service isn’t something your child needs right now. If the waiting list is seven years long and you wait three years to get on it, you’ve extended that wait to 10 years. Your child may need the service by the time his or her name comes up. And if they don’t need the services when your time comes, get off and back on the list so you have the option again down the road. The wait to be assessed by Scottish Rite, for example, is generally a year.
4. Learn to do it yourself. The Arnolds had an occupational therapist teach them how to do sensory integration therapies on their son. Doug went to a workshop and learned how to do what’s called picture exchange communication, a nonverbal way he could communicate with Brent. Doing it yourself gets around a system that often doesn’t have the services it should, saves money and cuts down on travel/appointment time. Heinkel-Wolfe had computer-printed labels on everything in the house and set their home up like a Montessori classroom, with neatly organized materials with sandpaper letters to help teach Sam to read. Sam, now 22, drives, is a courtesy clerk at Albertson’s and manages his own money and self-care.
5. Start with a developmental pediatrician. Many people are experts in one thing. You and your child need someone who can give you the big picture of your child’s diagnosis, and a developmental pediatrician—a pediatrician who has received sub-specialty training in developmental, behavioral and learning issues—is a good place to start. While these doctors are not highly trained in specific learning differences and disabilities, they can give you a big-picture diagnosis, which you can use to start a treatment plan. “Who you see is what you get,” Patsy says. “If you think your child has a speech problem and you take him to a speech therapist, they’re going to tell you your child has a speech problem.”
6. Labels can be a good thing. Psychologically, some parents and experts don’t believe in labels. Practically, however, labels can be your best friend. “Labels can open doors to services,” says Doug. “You don’t have to slap the label on his forehead and treat him like the label, but use the label to get on the lists and get into programs.” An important fact to remember is that children must have an official diagnosis before their 18th birthday to be eligible for lifelong services.
7. Streamline your life so you have time to navigate the system and work outside it when you need to. The Arnolds’ two typical children started doing their own laundry at age 9; Brent started at age 11. And sometimes, especially during their oldest son’s basketball season, they eat crockpot meals every weekday. Take a few shortcuts, so you have time to invest where you need it most.
8. Trust your gut. “A mother’s instinct is almost always right,” says Patsy. “If you think something’s wrong, something’s wrong. Don’t stop pursuing it.”
“It’s like peeling an onion,” Doug says of their journey. “Every time we thought we’d figured something out, there would be another layer. We would continually hit brick walls. You find a way around one and there’s another one. You’re battling for what’s best for your kids the whole time.”
Geisinger has also hit those brick walls. She believes parents must find their own way—hopefully with a little help from those who have smacked into and maneuvered them before.
“Even if there was a one-stop shopping place, sometimes we need to struggle through this to grow into this role that we now have as a parent with a child of special needs,” she says. “We need to learn so much on so many different levels. Sometimes you need those struggles to grow.”
*Name changed at parents’ request
