This past week, Fiona came home from kindergarten with the usual notes from her teachers, explaining her day. When I read one note, I envisioned party-style confetti raining down on me. It said, She identified all 26 letters of the alphabet.
For a writer like me, that sentence reads like, “Your kid has circumnavigated an entire planet, and will next start mapping its terrain.”
But that’s not the only big news lately. At kindergarten, she’s making friends, learning to dribble a soccer ball, and skiing cross country, the latter with loads of help from her aide. “She’s rocking kindergarten,” someone said to me the other day, and it’s true.
When she was a baby, I didn’t know she’d be self-feeding by age three, walking by age four, making steps toward literacy by age five. I still don’t know what’s in store for her—what serious road bumps or confetti-raining moments we’ll encounter in the years ahead. But so far Fiona has often been in the minority statistic of people with her syndrome. According to a medical overview written by leading doctors on Wolf-Hirschhorn syndrome, 45% of kids age 2 to 12 learn to walk, roughly 25% independently and 20% with the help of a walker or other supports. According to the same source, about 30% reach some autonomy with eating.
Sometimes people comment to my husband and me that we are responsible for Fiona’s progress. It’s a testament to how hard you guys work, they say. They give Fiona credit too, of course, because they know she’s determined and eager. But aside from her, they believe my husband and I are the ones responsible for our kid’s gains.
As much as I appreciate the compliment, it’s not true. We work no harder than the average parent of a kid with disabilities—which, by the way, means we work damn hard. You can’t be a parent of kid with disabilities and not bust your ass. The job description entails as much. (Wanted: “Special Needs Parent.” Must be able to: research seizure meds, monitor medical anomalies, arrange a complex calendar of therapy appointments, fight with health insurance companies, engage in two-hour-long IEP meetings, seek medically-approved and fringe therapies such as kinesiotape and alternative communication devices and hippotherapy and orthotics and Anat Baniel methods and a weighted blanket and DHA doses. Must do above without getting a single night of straight-through sleep.)
But even though nearly all parents of kids with, say, Wolf-Hirschhorn syndrome, bust their tails, that doesn’t mean all kids with Wolf-Hirschhorn syndrome walk, or self-feed, or learn their ABCs. So putting the acclaim on my husband and me could erroneously discourage other families. I’m not doing enough, they might think. I’m not working hard enough. That’s untrue. If you parent a kid with Wolf-Hirschhorn syndrome, and if you have a normal human heart—which is to say the kind of heart that naturally fills with love for your kid—you bust your ass. You just do.
The story that, after Fiona, my husband and I are the ones responsible for Fiona’s progress ignores two things: one, it ignores what I’ll call The Big Mystery (which is either the dice of the universe or complex gene expression or God’s enigmatic grace, depending on your perspective); and two, it ignores the bigger social picture in which Fiona flourishes.
I’m not going to write much about The Big Mystery. I’ve come to the screen today to write about the bigger social picture. The truth is, Fiona has a wealth of educational and institutional and financial supports, thanks largely to the state of Vermont.
I’ve written once before about the kind of therapy my daughter received in Ohio during her first year of life. Averaging forty-five minutes a week, it wasn’t good. The early interventionist often spent a good chunk of those minutes speculating on areas beyond her expertise, planting unnecessary worries in my head. She suggested Fiona was having seizures when she wasn’t. She speculated Fiona was in pain when I knew she wasn’t. About things a therapist should work on—such as Fiona’s perpetually fisted left hand—the interventionist told me she could do nothing, not even stretches. “We’re not really supposed to touch your daughter,” she told me.
Then we moved to Vermont, and Fiona began receiving hours of hands-on physical , occupational, and speech therapy weekly. Quantity wasn’t the only perk. These were high-quality experts, immediately working not only with Fiona’s fisted left hand but with a variety of other things I could never have known about. Eventually Fiona received even more support from a general therapist who followed through with the goals of the speech, physical, and occupational therapists, totaling sometimes eight hours a week of support. To boot, a special team of consultants visited our house because Fiona wasn’t talking but surely had things to say. They believed communication was a right, and consulted us on getting Fiona an iPad and an app for communication. Both were paid for by the state’s Flexible Family Fund program, which Fiona was eligible for because she had Medicaid. (As soon as we moved to Vermont, Fiona received Medicaid. In Ohio, we were on a waiting list that would have taken years.)
As Fiona neared the age of 3, I worried about what would happen once she attended school, but the preschool program turned out to be even more amazing. Vermont uses an inclusive preschool model—classes are supposed to comprise of 50% kids with IEP’s, 50% typically developing kids. Fiona entered preschool unable to feed herself and mostly crawling for mobility. Within a year, she was shoving spoonfuls of chili into her mouth and toddling without a walker. Learning alongside typically-developing peers was a huge motivator for her, and she had expert teachers, special educators, and therapists as guides.
In short, because the state of Vermont has a progressive, inclusive educational philosophy and invests in quality early education, Fiona thrived. As a professor of poetry and essays and fiction, I could never have taught my kid these things, no matter how hard I worked. Likewise for her dad who, as a priest, can teach a person about The Big Mystery, but can’t help a child’s mouth learn rotary chewing.
Now my kid is in a typical kindergarten class with an aide, where she also receives many hours of speech, physical, and occupational therapy a week. And because she still has Medicaid, we were able to get her a more portable speech-generating device as well as custom-made orthotics that help her walk with more confidence. We’re can also hire a personal care assistant for several hours a week, which alleviates some of the stress of what a friend calls Extreme Parenting and ensures that Fiona has more support. In other words, Vermont frees us up to be a little less burned out, a little more energized, which helps us be better parents.
To recap, Fiona’s success isn’t just because my husband and I are awesome, or because she is awesome, although she is. She’s determined and eager, but she’s still a five-year-old who could easily spend her entire day marking up coloring books. Awarding my husband and I (and even Fiona) most of the praise for her progress negates the role of solid social programs: high-quality early intervention, inclusive education, robust Medicaid. It paints a faulty narrative, one where the individual thrives alone.
This matters now more than ever because the national headlines talk of federal budget cuts, of Medicaid block grants, of an Education Secretary who showed worrying confusion about IDEA (the very act that guarantees kids like Fiona receive an education in the least-restrictive environment.)
Putting the praise on my husband and I alone draws up a faulty myth that government-funded support is unnecessary. And it is oh-so-necessary. Nearly every parent is devoted to his or her child. Not every parent lives in a state that supports them as robustly as Vermont.
The narrative of the thriving individual is beloved in America. Yesterday I listened to an NPR story about a war Veteran who woke from a traumatic incident quadriplegic. He was unable to breathe on his own. He was fed by tube. A documentary filmmaker, Julie Cohen, made a movie about him called “American Veteran.” Cohen said the veteran, Sergeant Nick Mendez, eventually learned to use a sip-and-puff (mouth-operated) wheelchair, and even a sip-and-puff fishing rod. Then she said, “If you’re motivated, and if you’re smart,” all these things are available to you. In other words, the only thing stopping a disabled person from living a certain life of liberation is himself.
What NPR failed to mention, among other things, is the cost of such technology. What it failed to mention is the need for financial support to pay for such equipment. There was no talk of insurance, of social programs to fund such high-tech tools. All a person needed to thrive was “motivation and smarts.” (For way more insight on wheelchairs and cost, please see Bill Peace’s posts at Bad Cripple here and here.
Meanwhile, every now and again, in what’s considered the “poor section” of my town, I see a man in jeans pushing himself in a low-sitting wheelchair. It’s a wheelchair that, despite his arms’ hardy thrusts, despite the hefty effort he exerts in his upper body, moves abysmally slowly. He needs a better chair, I think when I see him. He’s got motivation. He’s got hard work. He needs a better chair.
My kid has motivation. She, my husband, and I put in the hard work. But without the state and the nation’s social and educational supports, I don’t know where she’d be. In the coming months and years, I’ll be doing what I can to defend those supports.
Sidetone: If you have a story about how your state supports (or doesn’t support) your kid’s development, I’d love to hear it.
(Also, if you’re a disabled artist with a story about how cuts to Medicaid might affect you, my friend, writer Sonya Huber, would love to hear it. Check out her project, Lives in the Balance Project.)
My husband works with families, and some have kids with disabilities. It is hit or miss-by-a-mile around here. He has actually had to suggest once or twice that families move to the next county over because he knew that they would go bankrupt while trying to advocate for their kids in their current county. Our county isn’t a lot better, and we’re keeping our youngest son in private school for as long as we can because the *get* him, and they’ve helped him grow so much, but some of the rural counties are flat-out terrible.
When Betsy DeVos stumbled over IDEA and then followed up saying enforcement was “best left up to the states,” and Al Franken said “You recommend families move to a state that follows the federal law?” this is what I thought of.
I am so, so happy at how well Fiona is doing in school!
Thank you for calling out the myth. I hope you wrote to NPR about their story.
Lara Gardner (503) 915-1228
Some political organizations you might consider investigating…(I know that politics is a divisive topic but if we want more Vermonts and less Ohios for our citizens then it is necessary) are Swingleft.org and Flippable.org and Indivisible. Google them and find out about where they meet in your area. You might be heartened to discover just how many people support and are fighting for the same things that you speak about in this blog post. And thanks for writing such an articulate and eloquent blog. I read every entry!
Hey Heather, I’m always reading up on you guys. 😉
My oldest has idiopathic toe walking. The flipping saga this has been is amazing. I put all my trust in CHOP doctors, and got a therapist who was over her head giving her the wrong therapy. I paid so much for the wrong orthotics. My kid wanted to give up, and I let her. Her condition worsened, and a year and a half later we started the process all over. We went to a new orthopedic doctor at CHOP who was cold and not receptive, and he sent me right down that familiar hall and told her to start serial casting again. I just said no, I can’t do this anymore. I did everything the way the experts said the first time. Now I will reseach, and I will be the decision maker. It can’t get any worse, I know where that path leads.
My youngest had torticollis and plagiocephaly, and I reached out to her orthotic specialist who was such a great lady dealing with a full year of cranial helmets. I asked what can we do, where can we go. She spent New Year’s Day with us, suggesting braces my husband had been designing in his head for years. She couldn’t believe the precious orthotics were ever suggested, that it was near gross incompetence from the therapist and orthotic maker. She suggested a more progressive therapy location.
Then, here is the best part. All that crap was going to be expensive. I didn’t know what I was going to do. I went to a kid’s birthday and ran into other parents and we started talking about CHOP. She suggested I contact the County Intermediate Unit for help. She was able to get early intervention in house therapy. I called, said I have no idea what I am doing, and I was guided by loving women every step of the way. I was told my daughter was too old for early intervention, and was crushed I missed a window of opportunity no one told me about. But I was put through to a woman to help us apply for medical assistance using the PA loophole law, that regardless of income, she qualified for need based assistance. She could navigate that paperwork expertly, knew every pitfall to avoid. And in a record 3 DAYS we were approved for Keystone First secondary coverage. Her two sets of braces were thousands of dollars. It was all covered. The twice a week therapy that our seemingly wonderful HMO capped at 30 visits a year. Everything. All because I went to a party and made a friend. I learned about the secret free magical insurance.
So now I am the advocate no one was for me. I tell every parent of the resources available to them. I can’t understand why this information isn’t in that swag bag of crap you get at the hospital after the baby is born. This secret knock and password system of health care is frustrating.
Upside? $2 museum entrance fees for our whole family due to an initiative passed 3 years ago, as a side benefit for receiving medical assistance. Because when you’re drowning in health care costs, the Franklin Institute can make it better!
My god, this is so good. I am going to share it widely. I hope you’ve sent it to some members of Congress — or perhaps to your own representatives in Vermont so that THEY can use it.
The section on the NPR story really resonates with me. It’s a very “American” view of individualism and work ethic, bootstraps, etc. I too think it would be worth a letter to NPR to point out what’s missing in this view.
So important. It’s such an American understanding of the world – beat it on your own, fight against cancer, pull yourself up and out, being so generous when it comes to fund-raising for individuals but unable to transfer that generosity of spirit to society as a whole and people they don’t know personally. We are better when we as a whole help others together.
I love this.
Thank you for this, Heather. This is a really interesting post. I grew up in a home where it was believed to be the responsibility of the family, the church, and the local community and specifically NOT the government to take care of those in need. So much so, that my mother actually refused to apply for a certain benefit provided to her and my sister due to my sister’s disability. In the last few years, she has started receiving the benefit offered, but she feels bad about it (she receives a tiny amount of money from the government for taking care my sister who is mentally disabled).
After moving to Canada, I have realized the importance of government support services and it’s so good to hear about the great care you’ve received in Vermont.
That said, social services in and of themselves are not good if they are not done well. And that was the case for us in California. There were some services that have only recently come available for her to receive in the last few years (she’s 26) – such as Medicaid (my sister was without any medical insurance her entire childhood because private insurance would not accept her, and as far as I know government aid was not provided).
But even those things provided for us when she was a child and teen, were terrible quality. There were public special education aids who would come to our home to help us with a therapy program but they were poorly trained and never of any help. I do remember one guy who was very good but he was only with us a few months. The constant change in therapists means constantly disrupting the therapy programs for a new one or (more likely) none at all. Because of this, my parents have paid out of pocket for a therapist most of my sister’s life.
My sister also started receiving respite care in high school but mom had to keep requesting new caregivers. We had multiple caregivers that reeked of cigarette smoke. My highly sensitive sister started screaming when they came – even I couldn’t stand to be in the same room with them. They simply made things worse when they were supposed to be providing relief for my mother. Respite care workers were also supposed to help us with my sister’s therapy but very rarely did they do more than baby-sit. We did have two good caregivers who we kept for as long as they were able to help us. My family is very grateful for them.
Before Medicaid my parents paid out of pocket for all medical concerns (seizures, osteopenia, scoliosis, etc.). They paid and currently pay out of pocket for a therapist, an RMT, a Chiropractor, and all dental work (which has been extensive) among other things. Despite this burden, under Obamacare my parent’s insurance increased by 600% and they were forced to change insurance and move to a Christian sharing program (not necessarily a bad thing, but should never have been forced to make that choice).
After reading about the care Fiona has received through the state of Vermont, I wish my parents would move there. But for 20+ years, they’ve had one bad experience after another from the state government and I don’t think they could be convinced that such a move would be worthwhile. I do hope changes continue to be made within government social programs to alleviate the burden my parents bear but they themselves are unlikely to be advocating for more social benefits. I wish they would – but I empathize with their position.
Thanks so much for this nuanced perspective, Sarah! I can see how bad social services would make a person think that the government should serve no role in supporting them.
I can only hope that the assistance my own little family has received from Canadian social services serves as testimony to my parents that it can be done well. I had a completely government paid home birth with highly qualified regulated midwives, a year of paid maternity leave, huge monthly child benefits, and even designated funds for the three of us to use Toronto’s recreation programs (classes ranging from sports, fitness, music, to arts and crafts). I don’t know how we fare when it comes to servicing those with special needs. I imagine there will always be room for improvement.
Thank you so much for your blog, Heather. I’ve enjoyed reading your thought provoking posts and look forward to many more. Blessings.
I live in Vermont and I was an intensive needs special education paraprofessional for several years. I just happened to stumble onto your blog today and it was nice to get an outside perspective on how we’re doing here, how we’re providing for our kids. I have friends in many other states and am often aghast at the lengths they need to go to just to get the tiniest amount of help for their kids. I’m not a native Vermonter, I came here from New York, but I love this state. I’m glad that you came here and that Vermont is helping Fiona get the things she needs to thrive.
Hi Heather, my family and I really enjoy your blog, and we love hearing about Fiona. My daughter is 22 months old and has WH. Life as you are aware has been a stressful, yet joyful roller coaster. We live in Oregon where we receive certain bonuses that other states may not have related to our daughters support services.
Juniper receives weekly medical OT and Speech, and we have educational physical therapists who visit our home 2-4 times a month to support us with her exercises. All of these services are free due to Juniper being on Medicaid. Oregon also has its own state sponsored insurance (OHP) that provides free medical care for low income children and adults.
The new administrations plans to cut Medicaid funding would cause my daughter to loose important support services that assist her in having a better life. If we were to loose our daughters insurance, our family would surely loose our home and go bankrupt in the process. The US in one of the richest countries in the world, it is completely illogical that citizens are going bankrupt from medical bills. What a corrupt society to try to abandon the most vulnerable populations. My aim is to continue to advocate for the rights of my daughter and individuals with disabilities, they deserve to live life to thier full potential, to be safe, protected, heard, and honored.
I know that, just because you’ve privileged us with your writing in the past, it doesn’t mean that you owe us more. But I wanted to let you know that both my sister and I are in the thick of all that comes with being the moms of medically complex kids, and we both have really appreciated your posts. I check back here every day hoping for a new one.
All the best,
An awesome article as usual, but one thing bothers me – your description of yourself as a “Special Needs Parent”. You don’t have the special needs, Fiona does. As an autistic woman, I hope to be an actual special needs parent someday, and it bothers me when a term that should refer to people like me is instead taken by abled people to describe themselves.
Ettinacat…fair enough. I, personally, appreciate being apprised of this sort of thing. But I wish it wouldn’t “bother” you. I don’t think anyone is trying usurp your title or experience, rather in this instance, Heather used a term that is commonly used (however incorrectly). On my own behalf I thank you for your information, but sincerely wish that you would not continue to be bothered by such usage while continuing to inform people of their error.