Carol Ann Greenburg
Brooklyn Special Needs Consulting, www.bklynsnc.com
Sometimes I feel like getting services for my autistic son is like trying to dine at the world’s worst restaurant. You can’t afford the best eatery in the city, who could? You’re still really hungry so you walk into some local dive and the wait staff, whose entire job it is to feed you, is standing around staring blankly at the many obvious health-code violations. They’re clearly offended by the interruption when you ask for a menu. You’re the one who is hungry after all, why can’t you come in knowing what you plan to eat? Finally someone ambles over with a menu, drops it on your table like they’re doing you a favor, and you realize there’s nothing even remotely edible on it. Specials, Substitutions? Forget about it! After you wait an unholy amount of time, someone brings you the wrong order. Cold. You complain, and in their very first efficient move of the day, the staff coalesces to kick you out unfed because they reserve the right to deny service to anyone for any reason.
Our kids’ minds and spirits need appropriate, completely individualized services just as urgently as their bodies need food. A bounty of services should lie at their sweet little fingertips. No family in our position should have to wait for, fight for, or make do with inappropriate services, because a child needs something that’s “not on the menu.” Unfortunately, however, the truism that Life-Is-Unfair is even truer for us, so we must use a combination of persistence and creativity to score resources that should be, but aren’t, easy to access.
So let’s start with the P words, prioritizing and persistence. Draw a line down the middle of a piece of paper and write “Needs” at the head of one column and “Wants” at the head of the other. My seven-year-old singing, dancing, sports-loving attention magnet is severely language delayed. So while music therapy and swimming lessons are of great benefit to him, speech therapy is at the top of our Needs list. That doesn’t mean our family should forget all about music therapy or swimming, but when push comes to shove, its speech first, music second. Assuming we’re battling with the folks who are supposed to pay for the service, which we unfortunately often are, it’s always easier to fight on a single front than on multiple fronts.
Now that we’ve figured out the top priority, we have to tap the most logical source of funding. When it comes to speech therapy, an obviously academic need, we will naturally go first to the board of education. By law, all kids are entitled to FAPE (a free appropriate public education), so if we get lucky, the district will immediately offer all the speech that is required. This does happen sometimes. No one gets into the field of special ed to make their first million by time they’re twenty-five. Many school staff and district personnel care deeply about your child’s education, but their departments are not well funded, so they have to make hard decisions about who gets what.
This is where the other P word comes in. Persistence. (P is also for politeness and patience.) Persistence does not entail your screaming over the phone at one bureaucrat after another who would like to help, but their boss’s boss just wrote a memo about the need for tighter purse strings. Persistence is about writing detailed polite letters to the leader of the IEP team, letters that simultaneously acknowledge their expertise and your full membership in said IEP team. Persistence means following up with polite phone calls, during which you inquire if they might need any more information from you before you can all reach an agreement you can live with. Persistence means taking detailed notes on every single conversation, with as many exact quotes as you can write down. If there are raised voices and unhelpful attitudes, they’d better not be yours, but they’d better be objectively and accurately documented by you. In the end, that strategy gives you the best chance of getting your child’s needs met.
Now what about their wants? Or your wants? Or your other children’s wants? This is where creativity comes in. As I mentioned before, my son loves music therapy and we want him to have it. He’s an only child, so we don’t have to worry about other kids’ soccer games, or cheerleading practices, which I hear tell are inevitably in the opposite direction. Music therapy isn’t cheap, but with help from generous relatives we’ve managed to pay for it. The conservatory is a fairly short drive and we have two cars, so in the end we can fulfill that particular wish. Now, I’m sure he’d also enjoy skiing in the alps, but that would be a little more than our family can handle, in terms of time money and energy. In a perfect world, our limitless wealth would provide for his every desire and he’d be chauffeured to each delightful treat while we sat eating, delicious but calorie-free bon-bons on the couch. (If anyone knows of such a perfect world, by the way, please email me the address.) In this world however, the choices we make for our autistic child really have to work for the whole family, which requires some creativity.
Funding is the first issue you have to approach with an open mind. It can become almost automatic to hold out your hand to the Board of Ed for any service, because so much of what you want for your child has educational implications, direct or indirect. If, however, the service is more of a Want than an absolute Need, and particularly if it can be interpreted as, say, more recreational than immediately, educational, think of other sources before you go to your local school district. I could reasonably argue that my son’s music therapy has an impact on his education, for example, but the district could counter that music therapy is an extra curricular activity more appropriately covered by Medicaid, or a corporate charity, or a local nonprofit organization. Casting a wide net financially makes everyone happier – you’re more likely to get the money you need from the school district because it’s eternally strapped for cash, and from the corporation, foundation or other nonprofit, because they need to demonstrate that someone needs their services to justify their next grant application.
The next challenge to your creativity comes in the form of a phrase quoted reverently, and justifiably, by any decent disability rights advocate. “Person first thinking” is vital here. All autistic people, my son and myself included, have what the neurotypical world calls “obsessions” and what we autistic folk often refer to as “special interests.” When I was 12, I started teaching myself Japanese. That may not sound so unusual to today’s parents, but back then, most Americans had never heard of Manga or Anime, there was no such thing as a Japanese language class in any East Coast middle or high school. And services? Please. There was no working Asperger’s diagnosis back in seventies, much less any services geared towards verbal people on the spectrum like me. Luckily I had good parents who encouraged my interests, however odd, and what I like to refer to as not so much the symptom of, but the Autistic Superpower of perseveration. Even if we had the internet back then, I’m quite convinced no Google search for East Asian Language Instruction for Autistic Preteens would have yielded useful resources. So I started learning words from the one English/Japanese dictionary I could find, stalking and practicing on commuter trains filled with unsuspecting Japanese business people, and adjusting the antenna of my ancient black-and-white TV to find obscure chanels where people spoke Japanese. An unusual approach to be sure, but for outside-the-box thinking it’s best to go to someone so autistic they can’t even see the box.
Back to the present, to My Son the Jock, who unlike me had an early and clear diagnosis, good services, and at least so far, less esoteric special interests. Thank goodness most of us now have some sort of access to the internet, so it’s pretty easy to look up his sport du jour. My husband noticed his fascination with TV shows about obstacle courses. Forgetting myself and putting disability first, I looked under “Obstacle courses, autistic children.” Luck smiled upon me and I actually did find something. In Colorado. We live in Brooklyn, NY. He has a twelve-month school year and the chances of finding the one obstacle course clinic specifically designed for autistic children that fit into his school schedule … well, I don’t have to tell you how successful that effort wasn’t. I’m sure you’ve been there too.
Putting him, his individual interests and personality first, was not only more respectful, it was more useful. Just looking under “Obstacle Course, Kids” I found a few. They weren’t right around the corner, but New Jersey is a lot closer to us than Colorado. So say we do decide to pursue this further in our family’s copious spare time. When you think about it, it actually doesn’t take a gargantuan effort for me to email, or call whomever is in charge of the program explaining that our child, who most importantly loves obstacle courses and by the way also happens to be autistic, might like to participate.
I know even five years ago, the program coordinator might have muttered something not completely intelligible, but clearly negative. We live in a different and I think better world now though, thanks to greater autism awareness. The rising rate of autism has created an atmosphere in which geek is so chic, it’s rare to meet anyone who doesn’t at least know someone who knows someone with a kid on the spectrum. A world that I believe is gradually evolving into a less fearful, more accommodating place for all human beings.
I regret that I couldn’t get a diagnosis for myself until I was 44, and that I personally never got the kind of services I can now access for my son and children like him. But I also rejoice that he has been diagnosed in time to get those services when they can most help him. Like any mother, I worry about his future, but on my better days, I believe the world is his oyster. Great. So what’s next on his list, pearl diving?