The Salt in the Bottom of the Pretzel Bag: Reflections on Speechless

Last spring, my daughter wrote this poem in her 5th grade poetry class.

[gblockquote source=”Ella Beltz”]“The First Child”

Just cause I’m first doesn’t always
Mean I am first.

I am the core of the apple that
No one eats.

I am the extra salt in the bottom
Of the pretzel bag.

I am the unknown planet
Waiting to be noticed.

I am the dust on the top of the
Bookshelf, just sitting there.

I used to be noticed, but now it’s all about him.[/gblockquote]

This may sound like a poem written by a child when a newborn sibling arrives home. But it’s not. My daughter’s feelings of being ignored and pushed aside result from all the time, attention, medical care, behavioral therapy, ridiculously over-qualified babysitters, and energy her younger brother, who has autism, demands. A lot of media discussion of special needs kids focuses on schools and the children themselves. What’s often left out is how special needs children affect the entire family.

Because of this, my daughter Ella and I have been eagerly awaiting the pilot of Speechless ever since we saw the trailer last spring. It looked funny, energetic, and clever. In the show, actor Micah Fowler, who has cerebral palsy, plays JJ, a teenager with cerebral palsy. He is cognitively typical, but CP has rendered him unable to walk or speak. His mother, Maya DiMeo (Minnie Driver), has decided to relocate the family to “the worst house in the best neighborhood” so that JJ can have a full-time aide. The aide functions as JJ’s voice, reading from his atypical Augmentative and Alternative Communication (AAC) device. With “a voice” (Maya’s term for the aide), JJ is able to be in a mainstream class, rather than special education.

Happily, Ella and I found that the first episode, called “P-I-LOT,” lived up to the trailer’s promise. It’s well-written and well-acted. It’s poignant at times without being treacly. It’s hilariously funny. More important, it gets at the heart of the dynamics of families with special needs kids.¹

https://www.youtube.com/watch?v=4u55WK6AbaM

Parents have to be a little bit crazy when advocating for their kids

Maya is a force of nature in the show. She has a relentless energy, optimism, and faith that she can find a “perfect situation” for JJ. She combines these traits with a willingness to be demanding and combative. In the opening episode, we learn that Maya’s kids have attended six schools in two years in her quest for the best educational environment for JJ.

In this way, the show mirrors reality. This combination of determination and energy is often what it takes. For someone like my son, who has high functioning autism, the process of identifying the disorder took several years. Pediatricians and psychologists dismissed his behavioral challenges as the result of our overly permissive parenting. We took him from therapist to therapist, and I read lots of parenting books. Nothing worked.

Finally, in crisis, we tried again and sought the help of yet another psychologist. Thanks to her, we discovered that our son was not depressed and that we weren’t bad parents. The diagnosis (although a hard one) was a relief. With a diagnosis, we could finally get help.

Fortunately, for kids like my son and Speechless’s JJ, there are medical advances and legal protections that can substantially improve their lives. Research-based Applied Behavior Analysis (ABA) therapies help children with autism with communication and behavior. Federal laws like the Americans with Disabilities Act (ADA) and Individuals with Disabilities in Education Act (IDEA) mean that schools, employers, and others are legally required to accommodate children like my son. In addition, California (along with other states) mandates that insurance companies cover his behavioral therapy. Obamacare ensures that he will not hit a lifetime cap on medical care.

Even these legal protections are not enough. When Maya confronts the high school principal Dr. Miller (Marin Hinkle) over the use of a garbage ramp as her son’s “acceptable alternate access” to the school, she plays a game she calls “Trash or Person?” Yes, the garbage ramp provides access, but what does it say about JJ’s basic human dignity? As many parents of special needs children quickly find out, even when accommodations are specified, it still takes ongoing vigilance to make sure your child’s IEP (Independent Education Plan) is followed.

Families with special needs kids are stretched thin

Speechless is spot on in terms of how a special needs child affects the rest of the family. Dylan DiMeo (Kyla Kenedy) seems to be an overly competitive athlete with an impressive range of profanity, which may or may not be in response to her oldest brother’s CP. (We can’t tell from the pilot.) The middle son, Ray DiMeo (Mason Cook), exemplifies the backseat position siblings often take. He has to leave friends behind to move to a new house and a new school. On his first day at the new school, he discovers “a planetarium with a girl in it who likes me” — only to come home to find his mother talking about moving again. When he protests, Maya says, “We can’t stay just because you met some girl.” Ray replies, “No, of course not. It’s something I want, so who cares?”

This is a sentiment that resonated strongly with me and my daughter. Ella says she loves her brother, but she often feels that he gets all the attention. And, in many ways, she is right. We feel like we have little choice, because we only have so much bandwidth. And that fact is a very hard thing to understand as an eleven year old.

To manage his autism, my son receives 18 hours a week of behavioral therapy, which requires someone to be home with him and the therapist. We cannot take him to a grocery store or easily out to dinner. Sometimes he can sit through a movie in a theater. We always have to be prepared for a scene in public or to abandon our outing at any time. Sometimes we worry the police will be called. And once they were, when my son pitched a fit over getting into his car seat and a not-so-helpful bystander called 911.

The strategies we see in Speechless look very familiar to us. My husband and I trade off attending my daughter’s dance performances and basketball games. We try to take her out for some one-on-one time when things are really stressful. Similarly, father Jimmy DiMeo (John Ross Bowie) takes an upset Ray to watch (and mock) cars bottoming out on a steep hill. Just as in Speechless, my daughter’s needs and desires frequently take a backseat.

Parenting a special needs child reveals your own strengths and weaknesses. It forces you to be deliberately conscious of your marriage and your family. The directness with which Maya and Jimmy talk about her behavior, about the kids, about the school, isn’t just sitcom parenting. To stay intact, everyone in the family needs to be able to speak frankly. It is not the time for passive-aggressive communication.

Even well-intentioned people can be freaked-out by special needs kids

The perfect situation for JJ happens to be at a wealthy school in a comically liberal community. The high school, we discover, had recently “changed [its] mascot from a Viking, with its connotation of pillaging and male sexual aggression, to a sea slug, which has both male and female genitalia.” The principal, teachers, and students are so overly welcoming and overly sensitive to JJ that they end up highlighting his difference. For example, JJ’s homeroom class greets him with a standing ovation — which the teacher suddenly worries is insensitive to the fact that JJ is in a wheelchair.

It seems likely that the show will explore people’s discomfort with special needs — even (or maybe especially) well-intentioned, liberal, politically correct people. Thinking about something in the abstract is one thing. Being confronted with the nitty-gritty reality of a real person with special needs is another. On the first day of school, everyone is excited to have him. What will happen when the school and community are confronted with the day-to-day realities of JJ’s life?

My son’s challenges are different. There is nothing physically to identify him as being on the spectrum. He is verbal, he is smart, he is social, he makes eye contact. But he also melts down in public. He might throw things or hit someone when he is overwhelmed. Sometimes he flops down on the floor to protest some demand (like taking off his shoes). His fixation on toy trucks can easily result in a tantrum if he sees a truck that he cannot have. This obsession makes playgrounds, toy stores, drug stores, airports, department stores, Costco, and gas stations difficult places to navigate. For him, autism is primarily a behavioral issue, usually stemming from attention seeking or anxiety.

What most people see is not an anxious child overstimulated by his environment and unable to manage those feelings, sounds, sights, and smells because of how his brain is wired. What they see is a badly behaved boy throwing a fit. (I frequently joke that we should have t-shirts made up that read, “Give me a break. I’m on the spectrum.”) The judgment of others makes raising a special needs child more difficult. I don’t need unsolicited parenting advice. I can use smiles, support, and generosity.

Given how much the show’s creator, Scott Silveri, gets right, I was not surprised to learn he grew up with a brother who has cerebral palsy. My daughter and I are looking forward to the next episode. It’s exciting to see our family represented on television. We also hope that, as they watch the show, more people will understand the challenges facing special needs kids and their families.

Notes

1. ABC Family, an associated network, has done a good job with these kinds of shows, including Switched at Birth, which deals with hearing impaired communities, and The Fosters, which shows the complexities of a same-sex couple building a family through foster care and adoption. Return to text.