Will is on the couch fidgeting in his peripheral vision with a piece of frayed green yarn, artfully and very deliberately coated in masking tape by my hands under Will’s nonverbal instructions. Julia is watching Madagascar 3 for the thousandth time, and Marty, my soon-to-be-ex-husband and the kids’ loving dad, is in the kitchen blessedly making coffee. And me? I am at my desk, thinking about the article that ran about my little family in this morning’s Independent Florida Alligator.
The reporter, Colleen Wright, a UF sophomore, showed up last week at my garage sale, having heard that my goal was to raise money so I can move to California where, while I don’t expect to arrive into some kind of Oz filled with free speech therapy centers on every corner, there are most definitely a lot more options and available, affordable, accessible services for a child like my son, Will, who, at 7 and a half, is nonverbal (we always say “preverbal,” because we remain hopeful) and has autism, OCD, sensory integration dysfunction, and a host of chronic health challenges. Wright questioned me for an hour that morning, respectful and inquisitive, but clearly with no background in autism.
At this point in my public advocacy, however, I’m used to being the first face of autism for people, to my son being the poster child, and to my voice needing to be crystal clear if I want to effect change. So I handed over the garage sale to two incredible friends, Holly and Sandra, who had been at my house since before daybreak, and stood aside, telling our story to this student who felt sure her brief article would run in two days on Monday. Before leaving, Wright spoke quickly with Holly and then with Farrah, a friend who had recently arrived and proceeded to tell Wright how she and I gave birth to our sons on the same day at North Florida Regional Medical Center seven years ago, just hours apart, only her son, Griffin, is a typical child, and my son, Will, is not.
Wright called Saturday night to fact check a bit, and that, I thought was the end of the story, so to speak. I had said pretty much all there is to say: the State of Florida is simply not a place where I can raise my children. Will went from four one-hour sessions of private therapy a week (two speech and two occupational therapy) to one hour of each, and then those hours were cut down to 45 minutes and even 30 minutes. So here was my nonverbal child with autism, getting about an hour a week of therapy, total. This infinitesimal amount of therapy was provided by Children’s Medical Services, a state-sponsored agency, after I fought, tooth and nail, while they told me his needs were on par with a child diagnosed with ADHD.
Then, Rick Scott, Florida’s Governor, under pressure to balance the state budget, made the final cut: if you have private insurance, you can’t have Children’s Medical Services anymore. His decision was based on his belief, I’m told, that insurance companies and the schools should be providing therapy for kids like Will. Well, that’s true: they should. But cutting the funding for these children without instituting changes that would actually require insurance companies and schools to provide therapy is nothing short of reprehensibly irresponsible. We need a balanced budget. We need the state to function. But at what cost? A politician who balances his budget on the backs of children with disabilities is not only in danger of his state being financially bankrupt, but of it being morally bankrupt. For who worse to target than the disabled — of every age — who live in a state that is already consistently ranked 48th to 50th in the nation in per-capita spending for the disabled? Oh, and as for us having private insurance? Yes, we pay for Blue Cross Blue Shield. It covered 20 sessions of any form of therapy per year. That’s 10 hours and about $800 in co-pays for what amounts to less than half of what a child like Will should get in a week. And it’s meant to last all year.
I discussed all of this with Wright, and took it a step further: if we do not help these children now, if we do not invest in them by providing the therapy and health care they need, there is no chance they will reach their potential. And then what? Simple: they’ll live with their parents who will never get to retire and will eventually die or be unable to care for their grown children alone. They’ll end up, if they’re lucky, in group homes, unable to live independently. Further budget cuts will destroy the few group homes there are, and we’ll have a generation of children with cognitive disabilities living on the streets, flooding our prison system. And who pays for the justice system and the prisons? Tax payers. So we can either fund what these kids need now and give them a chance of becoming contributing members of society, or we can wait, intentionally watch them drown, and pay for lifelong care in varying degrees of miserable situations. Tough choice? I really don’t think so.
My friends, Holly and Sandra, tagged out and handed off the garage sale to Farrah and Amanda, as I wrapped up with Wright and relieved Marty, who was watching the kids but needed to leave for work. The sale closed down around noon, and we had done well: my month of prep, the dozens of sale-item donations from friends and acquaintances, the loans of tables, the advertising and day-of help from friends, it all added up to around $1200. That’s a real dent in the five or six thousand dollars I need for our moving costs. As I counted the day’s earnings, I realized I’d been on my feet since 4 a.m. after about 3 hours of sleep and was suddenly dead on my feet. The caffeine and adrenaline wore off, and I flopped on the couch. Not for long, though, as Marty was at work, and the kids needed my attention. I thought about how, once the kids and I move, things will be like this a lot: I’ll be working late to make ends meet and then up early with the kids and really have no chance at a nap because there will be no one, at least not for a while, to help watch the kids.
After a long afternoon alone with the kids, who were understandably bored but stuck in the house as I was so exhausted I felt unsafe driving them around town, I got a call from Wright. She wanted to do a little fact-checking, which was fine. We talked a bit more about why I am moving and how this all came about. It’s not a simple question, and so it doesn’t have a simple answer.
First, Marty and I bought this house as an investment with plenty of equity, beginning construction when Will was not quite a year old. We closed on the house when he was 17 months old, and the next month, we found out we were expecting Baby #2 (aka: Julia) and we noticed a change in Will. Over the course of the nine months, the housing market tanked, Will was diagnosed with autism, we went from having significant equity in the house we intended to flip in a couple of years to losing everything we’d put into it, and Julia was born.
That first year, we went to multiple specialists for Will, trying to find answers and help. Every time we walked into an appointment it was another $2,000. These autism care experts had long since learned that they’d go out of business if they accepted insurance because Florida’s laws are ludicrously stacked against providing the kind of care these kids really need. There was no time to fight state legislature to effect insurance reform, though. This was urgent. Every single doctor, specialist, website, book, and educator told us the same thing: the first five years of life are your greatest chance to help your son. So we did what I think any decent parent would do: we took out a second mortgage on our house and paid thousands of dollars a month for doctors, medications, tests, and therapists while spending my precious few free minutes a day arguing with Blue Cross for some pittance of reimbursement.
Along the way, I found out that childcare for a child with autism costs at least 50% more than it does for a typical child (if you’re lucky enough to find it); that dental visits require full anesthesia and cost $1500 that insurance companies will never pay back; that eating a gluten-, casein-, and soy-free diet while being on a host of non-prescription medications, vitamins, and supplements means it costs $700/month just to feed and medicate Will, and that’s before any doctors’ appointments, quarterly lab work, therapies, ER visits, broken windows or iPods or TVs; and that being in a special school program means I drive four times as far to access an appropriate education for my child every day during a time when gas is approaching $4 a gallon. Yes, there’s bussing. But ask yourself: would you put your nonverbal child on a bus with an aide who has no training working with kids with autism? Would you blindly trust that no one would bully or abuse your child who could never, ever tell you about that abuse? Would you make your second grader leave the house at 6:15 every morning so the bus has time to pick up a bunch of other kids? Or would you shell out the extra $150 a month in gas and take your kid to school yourself?
If you have to make a choice between the chance of giving your child some semblance of a normal life or just a shot at living even semi-independently, of speaking, of being able to navigate this world without someone constantly holding his hand, you do it, even if it bankrupts you. Even if it destroys a lifetime of excellent credit. Even if it means you have to say, eventually, I need help.
And that’s where I am now. I’ve spent every last dime. The house is in foreclosure and will go to auction sale in December. My credit is shot, and I’m a freelancer in the middle of a divorce. Not exactly what potential landlords are looking for when people apply to rent their houses. But I can’t just put down first, last, and security at some tiny apartment complex when we move home to Los Angeles. Will is extremely noise-sensitive, so loud neighbors would throw him into months of non-sleeping and tantrums. Will himself is pretty loud, so we would be complained about. A lot. And more than that, we can’t just get a two-bedroom place: Will needs his own space. He has sleep issues and tantrums; it’s not like he and Julia can share a room. As I work from home, my bedroom is already a bedroom and office where I work late into the night, so my sharing a room with Julia isn’t exactly feasible either. Plus, Will has a hard time going to new places, so we are housebound. Often. We need a little room to run around at home. A little patch of grass and a fenced yard. And lastly, most of the point of moving is to get Will great services. Some of those will be provided at school, so we need to move into the best school district we can where the services are available and plentiful. What does it all mean? It means I’m probably going to have to come up with a year’s rent, which is about $25,000. If I had that lying around, I can guarantee you: I’d have paid my mortgage for the last year.
I explained all of this to Wright, whose head was probably spinning: foreclosure, divorce, autism, state politics… after all, she just got sent out to cover an interesting garage sale. How could she have possibly anticipated all of this? The answer: she couldn’t. I got a call from The Alligator Monday evening asking if Wright could come back with a photojournalist, Brett LeBlanc, and follow us around for a few days so they could expand the story, really tell people what it is we’re going through, maybe share the donation link my friend, Laura, had set up, and possibly help raise some of the money we need for our move and at least the first few months of rent while I guide my kids through this major life transition, not only a move, but a move without their father, who will be staying behind to keep his job and continue to help support the kids. Those first few months will be a blur of tantrums, school meetings, therapy evaluations, job interviews, child care meetings, sleepless nights, plans of care, doctors’ appointments, and more. Working full time will be impossible, and it will take some time before it’s feasible.
So, Monday night, Wright and LeBlanc came over to meet the kids, right in the middle of our bedtime routine. Wednesday night, LeBlanc came back alone after having spent the afternoon trailing after Will, taking pictures of him at the YMCA. And then Thursday morning, both students were here at 5:45, interviewing us further and taking pictures of our morning routine. They added some craziness to our week, but I was glad to have them here, trying to get a grasp on our constantly unraveling story because there was a chance they’d raise some autism awareness. The images LeBlanc captured were powerful, and I think Wright did her best to fit in a lot of information in a very short space. But there is so much more to Will than his autism, and there are some things that didn’t make it into the story at all, so I feel compelled to share a bit more here.
Will People was left out of the story. I just don’t think there was room for it. But I built this grassroots charity here in town with help from friends and donations from people all over the country. Together with the outstanding folks at Gator Tec in Tioga, who refurbish (free) the donated touch-screen devices we receive, through Will People I’ve been able to provide many used iPods, iPhones, and even iPads to the local special-needs community. I’m grateful that this work will very likely continue after I move, with Cathy Zenko at The Center For Autism and Related Disabilities (CARD) at UF, where I have both received and led training seminars, taking up the job and transitioning it, most likely, to a student group called Impact for Autism.
Also left out: Will is 7 and a half and exhibits echolalia – parroting movie and song lines, which demonstrates a physical ability to speak. He doesn’t speak functionally, however, but we see he clearly can physically do so. He doesn’t so much as ask or answer yes-or-no questions, but with the right therapy, and enough of it, it’s very possible that he could and will.
Will doesn’t play soccer or tee-ball or peewee football. He goes to school where he works diligently at learning to care for himself, learning to write letters, and learning his numbers. He goes to the YMCA where he plays and runs, bounces and jumps, swings and climbs. And yes, he has tantrums there, and at school too. And at home. And yes, he bangs his head on the wall and the floor and the car window. And yes he screams for what seems to be no reason. But that’s what autism looks like. Without the appropriate therapies, and without the comfort of his iPods, which I had to take away after he broke 10 in six months, four in just one month this summer, Will has reverted to some old habits: more self-regulatory behavior (“stimming”), more self-limiting behavior such as refusing to go into new environments and having tantrums when this is unavoidable.
Will needs hyperbaric oxygen therapy, which helped get him in the best health of his life, but I simply cannot afford the $500/month we were paying for it anymore. Insurance never covered this gentle, drug-free therapy, despite the fact that Will’s labs show tremendous improvement when the only change we made was adding this treatment. Will also needs 25-40 hours a week of intensive speech, occupational, and behavioral therapy, and he can’t get it in Florida. That’s why I’m moving. Yes, he gets two hours a week of therapy at school, but it’s not individual therapy and it’s not even remotely close to enough. Thankfully, it’s with great providers, though, and I am exceedingly grateful for what they do with their limited time and resources.
I need support and help. I need to give my kids a modest, healthy life in which their needs are met and they both have the chance to reach their personal potentials, whatever they may be. I’m working as hard as possible to make all of this happen. I am a freelance content marketing specialist: I write marketing content for a variety of clients on a freelance basis because it gives me the flexibility to be there when my kids need me. I also started selling Thirty-One bags and gifts on the side for the slow months, despite the fact that managing two businesses is a bit daunting.
In the last few years, my world has unraveled: My son, my marriage, my credit, my house, my life. But in the next few years, things will come back together because I’m taking Will where he can get the best help possible. I’m guided by what’s best for my kids, and that makes this terrifying decision so much easier.
If you want to learn more about Will, please browse this blog. “Coming Out” tells the story of Will’s diagnosis, “A Night In The Life,” is a peek at what sleepless phases look like in autismland, and there are many others if you’re interested.
If you want to help our family, there are a few ways to do so:
You can send us your love, your prayers, your positive energy. You can share this blog, the Alligator link, the fundraising link. You can offer logistical support, furniture, and local information when we move. You can email me about job leads and ask for my resume or view my portfolio at JayBirdMedia.net. And you can be sure I am nothing short of tremendously grateful.