On March 27, 2000, I went to bed with a headache and woke up with a stroke in progress and a seizure on the way. It was a sudden onset of severe eclampsia on the first day of my 26th week of pregnancy. Toby was delivered that afternoon, 14 weeks prematurely, in an effort to save my life. Ironically, at 1 lb 11 oz, he had a better shot than I did at making it through those first few days. We both made it. I recovered 99 percent of all lost functioning (I had lost the ability to see, talk, walk and use one arm), and Toby is a charming, sunny, engagingly persistent and bright eight-year-old with a moderate level of cerebral palsy (CP). CP comes in many shapes and sizes. In Toby. it is “spastic diplegic” CP – it affects largely his legs (though his arms and trunk are somewhat affected, too) as they are unusually tight when he tries to engage them. He “scissors” his legs (they cross), and his toes point, both of which make walking a challenge though he does well with a walker and more recently with “tripod canes.”   Despite surviving the challenges of the neonatal intensive care unit (NICU) relatively unscathed, Toby was under a microscope long after he was discharged from the hospital, and his CP emerged later in his first year of life.

This essay concerns advocating for a child whose needs do not match  what is typically offered by providers. From very early on, Toby’s providers often referred to me and to Terry (my then partner and Toby’s other mother) as “good advocates” for our son’s needs. However, we really learned to be advocates over the years as we struggled to find solutions that worked for Toby’s unique needs and yet remained affordable to all parties involved in funding those needs (ourselves, the school system, the CP center/physical therapy providers, etc.). The special education system is a challenging structure to navigate. Children in general come in a wide variety of “flavors,” and children with disabilities come with even more unique needs. The system, while mandated to provide “individualized” services, on some level cannot possibly provide that as there are too many individual needs and not enough services to go around. What we accomplished is the subject here:  Our story is an example of working with local systems to design an individual slate of services for our son.

From birth on, Toby has had a multitude of providers watching his developmental progression in terms of medical needs, social issues, developmental milestones, physical challenges, etc. His first physical therapy (PT) sessions occurred in the NICU where the neonatal physical therapist did her best to ensure optimal positioning for growth and comfort for a baby released from the uterus months too early. PT appointments continued regularly during that first year as he was developmentally delayed. When the official diagnosis of CP was made at about 10 months of age, he was enrolled in Early Intervention, and the visits continued. Reflecting back, even in the NICU providers more than once commented on Terry and me being such good advocates for his needs. I remember not really understanding those comments since so little of his care was up to us at that point. What I think they were picking up on was consistent efforts on our part to ask questions about care decisions that were being made (research), to listen, to cooperate, to persistently but nicely voice our opinions about what we hoped for and to appropriately use our own resources when necessary.  

I am a researcher by training and spent much of Toby’s early years scouring the Internet for stories of other parents of children with CP, reading about treatment decisions they had made. A relatively new treatment was making some inroads into the US. Sometimes called “Europeds,” also known as “Suit Therapy” or the “Therasuit” method, the approach combines (1) use of a soft dynamic orthotic that aligns most of the major muscle groups of the body with (2) an intensive exercise program for several weeks at a time (several times a year). At the time, there was a center in Poland that offered this treatment, and a newer place had opened up recently in Michigan. We spent a lot of time feeding research articles to Toby’s primary physical therapist, talking to her about it, and brainstorming possibilities. She wasn’t against the idea at first, though nor was she that excited about it as it was not yet a proven technique, and it seemed daunting to have to travel for several weeks in a row several times a year. We discussed trying it for a session, though, to see if it worked. As she read more, she became intrigued by the idea as potentially beneficial for some kids.  

More than once, we wished that there existed a local-to-us center. Two physical therapists had started the center in Michigan and then left to open a company that trained other therapists in the methods and techniques, and to sell the necessary equipment¹. We asked Toby’s therapist “What would it take to get you trained and open up a center here?” She said that the physical space and scheduling issues at the center were probably workable, but ultimately, it was a business decision and money was an issue. We all looked at each other – and one of us suggested, “How about if we gave the center a pot of money – what we would spend on a trip for a month-long treatment at Michigan – to use as seed money for such a program in Rochester?” This was an “aha” moment. Toby’s therapist suggested we talk to the center’s Director, who then suggested we make a presentation to select center staff:   the therapists, director, finance person, and other service providers.   

We did, giving a short overview of the treatment itself, theory behind it, and contrasts and comparisons to more typical PT protocol. We also introduced our offer of seed money, which we described as a business opportunity for them, to help them start a program that would serve a number of local clients. We left the meeting with the ball in their court, and we touched base with the Director periodically. Within a few months, she told us that they would be thrilled to accept our donation. They would send a physical therapist for training, buy the equipment, and set up a program at the center. They would use some of their own funds to make up what our donation could not cover; and count on it being offset by future income. A few months later, they set the wheels in motion: Toby’s therapist went and completed the training, and they purchased the equipment.

Toby was the first child to go through the program in our area. He completed a four-week stint of the European Pediatric Therapy program². Halfway through it, we took him and his older sister to the local children’s museum – and for the first time, Toby walked throughout the museum using a walker. Prior to the intensive program, Toby used a “gait trainer,” but he was not that fast or efficient with it. While he could use a walker, it was slow going and hard work for him. Two weeks into the intensive program, he was a completely functional walker-user. It was one of those utterly poignant moments (on Mother’s Day!) where as moms, we were both in awe – of his progress and newfound abilities, and of the opportunities that had just opened for him with this treatment.

He was three years old at the time, and he has completed two to three sessions annually since then, usually three-week long sessions. While he makes physical jumps in ability with each session, that first session was the most dramatic.   

As he approached kindergarten and the transition from preschool to elementary school, we started working with the school system to set up his kindergarten Individualized Education Plan (IEP)³. We wanted to maintain this therapy as part of his regular program, and worried about the traditional school-based “pull out” model of PT services for him. Toby is cognitively on par with other age-peers. Additionally, he really needed the social environment of a regular classroom as he was delayed in areas involving social interaction with other children. We worried about the impact of pulling him out for all of the necessary services. We wondered aloud to Toby’s physical therapist – had she ever heard of a school system putting something like the intensive program on an IEP?   We approached the IEP meetings prepared to ask for just that. This form of therapy worked particularly well with Toby, and we were hoping he could continue it through these early school years.

We prepared for the IEP meetings with the same attitude that we had while lobbying for the center to set up the intensive program. We stated our case, with research background and reasons for it, and listened to their concerns and reactions. We met with the special education director before the IEP meetings to introduce ourselves and to plant the idea of an atypical slate of IEP services. We acknowledged the complexity of demands on the school’s end of things – scheduling, multiple children to serve, staffing, etc. In a relatively short period of time, the special education director for Toby’s school said that while it was his job to make sure that the school provided an educationally appropriate amount of physical therapy during the school year, it was not his job to determine what kind of physical therapy. There was no requirement that it happen at school, only that it happen during regular staff work hours.

We hadn’t considered this distinction, but we were incredibly glad that he offered it up – it was another “aha” moment. The distinction between the amount vs. the kind of therapy was crucial – and the IEP process was relatively simple and painless for us after that distinction was articulated. Here’s how the logistics worked: The IEP had a certain number of hours of PT during the school year on it. We used some of them to do regular at-school PT – largely to address any mobility or positioning issues that presented themselves in the classroom or around the school. This time was done either on a pull-out basis or in the classroom itself – whatever made more sense. The rest of the time was “banked” and we used it twice a year for the intensive PT program. Any hours beyond that we covered ourselves. If the intensive program used up more hours than on his IEP, the school did not pay for them.

Our ability to come to this solution depended partly on our recognition of the school’s limitations. We realized that the systems set in place to serve children like Toby are not bottomless pits of resources. While we want what’s best for him, we have ultimately managed to find a number of ways to ask for it, where the cost was not higher than the more mainstream solution would have been. If you take money out of the picture for service providers, it’s harder for them to argue against a tailor-made solution. While our advocacy focus has never been on cutting costs for providers, it has helped that more than once, our solution has not been a major new expense but instead a reapportioning of resources.

The two examples of advocacy I have just related — getting the intensive program set up in our area and getting services using it addeded onto Toby’s IEP — have a number of common threads in terms of our approach. They include:

• Doing research — our homework
• Consistent and thoughtful input from us
• Listening to concerns and questions from the other side
• Some luck, but less than you’d expect
• Cooperation
• Time – none of this happened overnight
• Thinking “outside the box” in getting to the desired endpoint
• Some of our own resources (seed money) but again, less than you’d expect

In the end, I now understand what those providers meant when they deemed us “good advocates” for Toby’s needs. As his parents, we have insights into what makes Toby “tick” in ways that providers do not. Certainly, we do not have the professional training and skills that the providers have, and we realize that input from providers is extremely valuable along with our own insights about his needs. What we continually strive for is finding solutions for Toby that may not always be “common” or “typical.”   More than once, we have ended up with a solution that offers far more to our son than more usual solutions.

Dr. Sara Schley is a co-parent of Toby and Hannah, Toby’s older sister. She knits, spins yarn, and figure skates in Rochester NY and is the Senior Institutional Researcher at the National Technical Institute for the Deaf/Rochester Institute of Technology. She blogs occasionally at saraskates.com.