Advocacy vs. “Helicopter parenting”: what’s the difference?

I’m thinking about helicopter parenting today. You know: the much-maligned, over-protective parent who does everything for their child instead of empowering their child to do…whatever it is that needs to be done. And I’m thinking about what helicopter parenting looks like when one is parenting a disabled child, and whether or not there is such a thing as helicopter parenting when one is parenting a disabled child. I’ve been advocating for my son in a number of spaces for most of his life, and I always and continue to second-guess myself: am I overstepping? Will the people on the other end of my advocacy think it’s all too much, assume I’m a helicopter parent, and dismiss me out of hand? And how–in a society with such deep tension between over-parenting (whatever that means) and neglect–do I ensure that my intended audience understands that my advocacy really is about my kid and not about me? My own anxiety over this shows me how engrained ableism is: I KNOW I need to advocate for my child, and yet I constantly question my own intentions.

Helicopter parents have gotten a bad rap lately. There’s been a lot of press about the damage helicopter parenting is doing to young adults and, by extension, the society in which they now supposedly can’t function. Here’s one from a few years ago, published on CNN, which shows how Helicopter parenting can “ruin kids’  job prospects.” According to this article in the LA Times, helicopter parenting is “ruining America’s children.” Also, if we are to believe this article in Parenting, there are many varieties of helicopter parenting and adults are going to extremes to smooth the rough edges from the experiences of their mini-mes. And all the advice out there comes down to STOP IT AND LET YOU KID LIVE THEIR OWN LIFE. That seems like simple and sound advice, and no doubt, some folks need this advice. (There are few naysayers for this now common advice. One notable exception came from Brink Linsdey, published in The Atlantic under the title “The Real Problem with Helicopter Parents: There aren’t Enough of Them.” Lindsey points out the huge class problems with this myth: among highly-educated and financially stable families, parents have leisure time to pay more and closer attention to their children than in previous generations. Among families with parents who work long hours for poor pay, attention is a luxury. A-freaking-men.)

This essay, “What’s Wrong with Helicopter Parenting?” by Dr. Gail Saltz, published in Child Mind, emphasizes the importance of facing and overcoming obstacles during childhood. The argument is simple: if a child faces obstacles and overcomes them, they will gain the confidence necessary to tackle obstacles down the road. She bases her essay on a study done at the University of Buffalo: “Researchers looked at people who had been through difficult things, and they found that, on the one hand, going through very traumatic experiences does not bode well for one’s long-term resilience, but, on the other, going through almost no difficult experiences also does not bode well for one’s resilience.” Note this phrase in particular: “going through very traumatic experiences does not bode well for one’s long-term resilience.” I’ll come back to that.

Here’s another, published in Psychology Today, which takes on Helicopter parents who go so far as to interfere in their kids’ graduate school application process. This article is particularly interested in the money angle: parents are paying the bills for graduate school and want the best deal for their money. (Parent paying for graduate school? That’s another issue, deeply wrapped in privilege, that we’ll have to save for another time.) Psychologist Michael Ungar was consulted for this article, and he’s pessimistic about what this sort of helicopter parenting means: “The point of parenting should be to grow a child who is capable of taking on adult tasks. I can fully understand coaching a child on how to fill in applications and how to deal with admissions officers. But doing that for the child is misguided and short-sighted. This is not a strategy for long-term well-being. It is always better to empower children to make good choices for themselves rather than having them remain dependent on parents to sort out problems for them.” In the end, this author argues, the students develop poor coping skills and their stress and anxiety increase because parents have overprotected them.

When I directed a graduate program at a public university, I was quite surprised when parents contacted me on behalf of their children. This happened at many stages of the application process: initial vetting of schools, during the application process, and even the interview on campus. In some cases, the parents insisted on accompanying the child adult applicant into my office and would not let the child speak. I concluded that those applicants were not good fits for my programs, and in most cases I was right. But what I don’t know is how many of those parents had to advocate for their children at some point. How many of those applicants had learning disabilities? I don’t know. Were any of those applicants neurodivergent? I don’t know. Did any of them deal with crippling anxiety on a daily basis? I don’t know.

So what about helicopter parenting of disabled children? Here’s another essay, specifically about helicopter parenting and autism. (Which makes me wonder: is this about autistic kids at all, or just about parents and some separate entity named Autism? Person-first language can be so confusing!) Even this article advocates letting kids explore life through a hard-knocks approach, cautioning parents not to overprotect their children. The essay centers on a particular boarding school, and teenagers there who, the article implies, really ought to be able to do certain things for themselves by now. “‘We will have students who can’t do anything on their own although they have IQs in the 120s,’ said Dr. Hays of Franklin Academy, a day and boarding school for students with autism spectrum disorder and nonverbal learning disability in East Haddam, Connecticut. The teens have a ‘learned helplessness,’ he said. Their parents may have battled to get services for them and to ensure they could succeed despite their challenges. After all that, it may be hard for those parents to back off and watch their kids possibly fail at something.”

For those playing at home, let me highlight just some of the ableism rampant in this one little chunk of supposedly encouraging prose. Neurodivergence means that skills–both learned and innate, intellectual as well as motor skills–are variable. They may not transfer from environment to environment. They may not be available every day. They may not be dependable from hour to hour. Shaming students with high IQs for not being able to “do anything on their own” reduces the complexity of a child’s life to what they can’t do. I don’t know anything about this school, so I’ll stop there. And I do take the point that after spending years advocating for a child to be able to participate in school, church, and other community programs, after needing to facilitate every damn experience so your child is neither excluded nor mistreated, it is hard to let go. But this isn’t about being afraid to see your kid “possibly fail.”

In the end, the attack on helicopter parents and the spreading wisdom that we need to do less for our kids lacks the nuance that Disability Justice requires. There’s really no room in this shaming for parents of kids who truly need the support. Remember that quotation from the University of Buffalo study? “…going through very traumatic experiences does not bode well for one’s long-term resilience.” We who advocate for our disabled kids do so because they have already been traumatized, and without intervention, unless we actively interfere with the behaviors of people who do not accommodate and accept our children, the traumatic cycle will continue. We who advocate for our disabled kids do so because the world is not made for them. We carve new spaces for our children where none exists. We protect them not because we want to shield them from experiences, but because the experiences they have already endured are unjust, unkind, and often inhumane. Until this world begins to accommodate and welcome disabled children (and adults!), we have no choice but to hover closely and attack when necessary.

 

Starbucks in my community? Let’s show them why we #BoycottAutismSpeaks

On Labor Day I took my son to Starbucks for a little mother-son date. While we were there, we noticed this flyer advertising upcoming events supported by a program called Starbucks in the Community:

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Notice especially the Autism Speaks event in the middle, one of the ubiquitous walks A$ holds around the country. Given that I support the #BoycottAutismSpeaks movement, I inquired at the counter about who I could talk to about removing support from this A$ event. I was given a business card, and wrote the following letter the next day. (I’m sharing the letter in full both so I don’t have to resort to awkward “and then I said” reportage, and also in case anyone wants to borrow the wording or the rhetoric in future letters to Starbucks. I hereby give blanket permission for you to share and use this.)

***

“Dear Ms. [name redacted],

“Yesterday I took my 9-year-old to Starbucks for cake pops and a game of cards, one of his favorite things to do. (We usually go to the store in Round Rock on Palm Valley Blvd.) While we were there, I noticed a Starbucks in the Community flyer advertising several upcoming fundraising events. I’m so delighted to see an international franchise taking interest in local communities. But I want to draw your attention to one of the organizations your flyer supports, Autism Speaks, in the hope that the stores in your district will withdraw support from this organization.

“You may not know that the Autistic community has been actively boycotting Autism Speaks for quite some time now. Said differently: the very people Autism Speaks purports to help do NOT support the organization. A number of organizations in the disability community have banded together not only to boycott Autism Speaks, but also to get word out to the public about the damage Autism Speaks has done to Autistic people. Here, for example, is an eloquent open statement about the boycott:
http://www.boycottautismspeaks.com/why-boycott-1.html. Let me highlight a few points from this document:

-“Autism Speaks’ senior leadership fails to include a single autistic person. Unlike non-profits focused on intellectual disability, Down Syndrome, Cerebral Palsy and countless other disabilities, Autism Speaks systematically excludes autistic adults from its board of directors, leadership team and other positions of senior leadership.”
-“Autism Speaks has a history of supporting dangerous fringe movements that threaten the lives and safety of both the autism community and the general public.”
-“Autism Speaks’ fundraising efforts pull money away from local communities, returning very little funds for the critical investments in services and supports needed by autistic people and our families. Only 4% of funds donated to Autism Speaks are reinvested in services and supports for autistic people and our families.”
-“Autism Speaks’ advertising depends on offensive and outdated rhetoric of fear and pity, presenting the lives of autistic people as tragic burdens on our families and society.”

“Regarding this last point, please see the attached image of the flyer I spotted in the store. Note the final sentence: “Walk Now for Autism is an inspirational & impactful opportunity to raise money & awareness to help change the future for all those who struggle with autism.” As it turns out, my son–who was with me and saw this flyer–is Autistic. He does not struggle with Autism. He is actually quite proud of being Autistic. He does, however, struggle with a larger society that paints him as less than normal, or needing to be “cured.” My step-daughter is also Autistic. My children do not need awareness campaigns, and they
do not need to be cured. They need legal rights, community and social services, and acceptance for who they are.

“There’s more to the boycott document, and I hope you have the opportunity to read it in full. And there are many more such blogs/ essays/ articles (see, for example: http://emmashopebook.com/2013/11/13/whats-wrong-with-autism-speaks/, and http://www.forbes.com/sites/emilywillingham/2013/11/13/why-autism-speaks-doesnt-speak-for-me/.) If you would like to read a more recent indictment of Autism Speaks, here’s an op-ed in the L.A. Times by Steve Silberman, whose new book NeuroTribes is the most complete history of Autism ever written: http://www.latimes.com/opinion/op-ed/la-oe-0824-silberman-autism-speaks-20150824-story.html. Again, let me highlight one moment in the op-ed:

“Imagine a world in which the leadership of the NAACP was all-white; now consider that not a single autistic person serves on the board of Autism Speaks. This absence makes itself felt. As people on the spectrum have struggled to overcome years of stigma and negative stereotyping, the group has framed their condition in terrifying and dehumanizing terms. Its 2009 video “I Am Autism,” which debuted at the United Nations, portrayed autism as a creepy stalker: “I know where you live, and guess what? I live there too. I hover around all of you…I work faster than pediatric AIDS, cancer and diabetes combined… I will plot to rob you of your children and your dreams.”

“This is what Autism Speaks does in communities. This is how Autism Speaks portrays children like mine. This is what Autism Speaks does with the money raised at walks such as the one advertised in Starbucks in my town.

“I hope you will reconsider your support of Autism Speaks. If you are dedicated to supporting Autistic people, I suggest that you consider supporting the Autism Self-Advocacy Network or The Autism Women’s Network instead. I’d be happy to talk more with you about how to support Autistic people in our Central Texas community.

“I’d like to continue taking my son to local Starbucks stores. We treasure these board game / card playing afternoons and he adores those lovely cake pops. But I cannot take him to places that support organizations that label his life a “struggle” and him as “lost” or “kidnapped.”

Mant thanks in advance for your consideration.

Felicia Miyakawa”

***

I wasn’t alone in my objections. Several other parents–even more than the people I reached out to!–wrote to object, and I’m happy to report that Starbucks responded. The acting district supervisor not only sent my email to her media staffer to vet my resources, but also contacted Seattle headquarters. My name has been given to to southern district supervisor in charge of community relations; I certainly plan to follow up.

I talked with the district supervisor this morning, and here’s what I learned: Starbucks has had a long association with Autism Speaks. It started with a couple of parents in partner organizations whose children are Autistic. The parents felt that A$ was making a positive difference in their lives, and worked with Starbucks to create a partnership. (The gist here is that Starbucks supports A$ walks elsewhere, too, not just here, so this is a much bigger battle!) So corporate headquarters now knows about the #BoycottAutismSpeaks movement, but also has a long relationship with people who are passionate about A$. Starbucks needs to know who to support.

And here’s where YOU come in: Starbucks continually reviews its relationships with community partners. The company is committed to supporting A$ walks through the end of the year, but that commitment is not permanent. If we can give them local community partners to support in lieu of A$, they will listen. I want to emphasize that the supervisor I talked to was quite eager to support the needs of people, not organizations. It makes perfect sense to her that if A$ is not supporting people, we need an alternative. But WE have to make the case, and WE have to give them an alternative community partner to support.

WHAT YOU CAN DO:

  1. If you are new to the #BoycotAutismSpeaks movement, please take some time to read the links above. Then ask yourself: do you really want A$ in your community?
  2. Forward this everywhere. Let everyone know that (1) Starbucks, as an international cooperation, supports A$, and/but (2) they are willing to listen and talk.
  3. Send your own letters. I promised not to give out email addresses here (*send me a private message, hint, hint*), but there’s a dedicated portal for suggestions about community involvement here: http://mystarbucksidea.force.com. the supervisor I talked to insisted that suggests posted here are constantly reviewed and discussed at corporate. You could also leave a comment here: http://store.starbucks.com/customer-service/cs-landing.html. Or, contact your local store, find out who the district supervisor is, and send an email to that person.
  4. Find / create alternative events for Starbucks to support (and please work with organizations run by or supported by #ActuallyAutistic people). It’s easier for Starbucks to work with partners who host specific events. (This is another reason why it is so easy for them to support A$.) #ActuallyAutistic people who run organizations: please help us all get the word out about your events so we can support your work.
  5. If you are reading this and you are already working on a similar campaign, please contact me! I want to work with you to amplify our efforts.
  6. People in Central Texas: please let me know what’s going on in your community that helps #ActuallyAutistic people.

Who’s with me?

#BoycottAutismSpeaks

#neurodiversity

#Autism

Twice-exceptional kiddos and the conundrum of Least Restrictive Environment

My son started 4th grade this week. This year he is at a new school, his third school since starting kindergarten. Between second grade and third grade we moved to another state, so naturally he attended a new school last year. We searched long and hard for a school rich in both Gifted and Special Education resources and deliberately moved to a neighborhood served by that school. But this year we had very little choice about where he would go to school. After working with him for a year, the administrators and teachers at his third grade school decided that his behavioral support needs exceeded what was available at that particular campus and that it was time for a different approach.

Let me put this into language parents of kids like mine will recognize. My son was in trouble for “disruptive behavior” nearly every day last year. (I’m qualifying “disruptive behavior” because I want to problematize it later.) Being pulled out of his general-education classes and going to his special-education teacher for “cool down time” was just as much a part of his schedule as Math and Social studies. He became very close with the Assistant Principal. Notes / emails / calls home were de rigueur. Behavioral charts tracking responsible, safe, and respectful behavior came home every day for most of the year. At some point during the year, the Assistant Principal decided that in-school suspension was no longer appropriate for my son, who actually preferred the contained, quiet space and unrestrained access to a single teacher. Behavioral specialists from the district were called in for observation and help. And by the end of the year, everyone at the school agreed that he needed a change in placement, at least as a temporary measure.

Over the course of last year, his schedule changed from a less restrictive environment to a more restrictive environment. He began the year in a regular third-grade class with an extraordinary teacher who excelled in differentiation. He also had pull-outs for Talented and Gifted (TAG) subjects, and scheduled sensory breaks with his Special Education coordinator. In some classroom spaces (even TAG), he was bored. In others, the sensory input was overwhelming. Boredom and overwhelm often lead him to behavior others find disruptive: verbal stimming, opposition and argument, and sometimes, loss of control of his body. We changed his schedule several times, reducing the number of transitions he had to go through each day. After spring break the principal suggested placement in 5th grade TAG math (a bit beyond his abilities) and 4th grade TAG language arts (still boring). This cut down on the transitions because they were back to back, but ultimately this wasn’t a good solution because it didn’t hit his brain needs just right. Then we put him on furlough from his TAG classes, trusting his amazing teacher to fill in the brain gaps through differentiation. She didn’t disappoint, and he felt less stressed with fewer places to go. But transitions continued to challenge him, and any change in routine (chair in a different place, substitute teacher, change in rule, change in schedule, etc.) made focusing on responsibility, safety, and respect nearly impossible.

(Notice, however, that these goals are all behavioral and have nothing to to with his academic performance; he managed to get fabulous grades even when he wasn’t really paying attention and was really stressed out. So this is not a kid who needs academic intervention. This is not a kid who needs help learning. This is a kid who struggles in a social and sensory environment that is not suited to his needs. His “behavioral problems” are very valid responses to feeling overwhelmed and overstimulated.)

The remaining possibility for an even more restrictive environment at that campus would have been primary placement in a special education classroom. But because my son is gifted, this is not a good placement for him. He’s very impatient with the other kids in the class who need more time to sort through information. His impulses to shout out answers are even stronger in this environment. So we were stuck with a conundrum I’m confident every parent of 2e kids has to confront: what is the ideal classroom setting for a child who is gifted and needs a quick pace in terms of absorbing new knowledge, but who is also disabled, and needs patience, frequent breaks, iron-clad routine, and allowance for the variances of each day’s (each hour’s!) sensory needs? The answer was not the magnet school he went to for K-2. That school almost met his academic needs, but had painfully few resources for special education. The Special Education teacher was only on campus one day a week, and there was no resource room to retreat to in times of high stress. And the answer was not the school he attended last year, which had adequate TAG and Special-Ed resources, but a busy schedule that was too much for him.

So now he’s in a program called Achieve at another elementary school in town, one of three such Elementary school programs in our school district. Achieve is for kids who are already in Special Education who need more behavioral support. (In case you are tempted to google this, know in advance that there’s little to no information on the internet about this program. Kids are placed in Achieve by referral, not usually by parent request. The teacher-to-student ratio is incredibly low–there are 2 teachers and 4 aides to 14 kids in my son’s program!–and I imagine the district struggles to maintain those ratios. So there’s no advertising for Achieve. Even so, I find the lack of on-line information curious.) There are two classrooms. The first, where he is currently placed, is self-contained. That is, the kids don’t rotate to other classes; they don’t attend “specials” (such as Music and Art); they eat lunch in the classroom together. With fewer transitions and fewer opportunities for sensory overload, the kids are theoretically supposed to be better able to learn coping mechanisms for overwhelming school scenarios. We’ve been promised that a request for a sensory break is never denied. Kids are guided in ability-level academic work. When a kiddo feels ready, xie graduates to the next classroom, and begins to re-integrate into the gen-ed population one class session at a time, always accompanied by an aide (and always with the option of going back to Achieve, with zero judgment). If it takes months for a kid to feel up to attending music class, for example, then it takes months. (This was a particularly challenging class for my son, who is sound-color synesthetic and may have perfect pitch. There was just too much sensory information in music class for him to handle most days!)

The theoretical goal for all children in this program is to eventually re-integrate back into the less-restricted environment of general education, bit by bit, slowly so that the child feels completely in control. There’s no particular goal date, no set schedule for any of the kids. For some kids this process takes weeks. For others, the safety of the Achieve program feels more comfortable and they stay longer. There are equivalent programs in middle school and high school in our district. As my son’s new teachers told us, some kids always need the support of these programs, and that’s just fine.

At issue here is the legal mandate of Least Restrictive Environment (LRE), which is a complicated but crucial part of IDEA, the Individuals with Disabilities Education Act. I’m not an attorney, so I won’t attempt to explain this part of IDEA in detail. (This page is a good resource. And this page includes the original memorandum about LRE with helpful links inserted after original paragraphs.) What it boils down to for my son is this: he has the right to a free education with “peers”–who are not disabled–to the greatest extent possible. And herein lies the challenge: 2e kiddos are a minority within a minority. No one really knows how many 2e kids are currently in schools. In a 2006 handbook entitled “The Twice-Exceptional Dilemma,” the National Education Association estimated that about 6% of children served by IDEA may also be gifted. A paper by Micaela Bracamonte published in the March, 2010, 2e Newsletter provides a more specific number: 70,000 2e kids in self-reporting school districts across the country. “This number,” she writes, “represents a percentage consistent with estimates that two to five percent of the gifted population have LDs and two to five percent of students with LDs are gifted.” Then there’s this recent article that claims that 14% of gifted kids also have a learning disability. Any way you look at the issue, it’s a relatively small number of kids.

My son has yet to have a classmate who is both gifted and disabled. He knows other 2e kids, but they haven’t been his classmates. So who are his “peers”? When he is with his gifted “peers” in a less-restricted environment, his disabled self seems out of place. When he is placed in a more-restricted special education classroom, his gifted self is not well served. And, of course, he is not two selves. He is one boy, one incredible boy who simply needs a safe place to learn. His true peers, those who are best equipped to understand him, are likely to also be both gifted and disabled.

The jury is still out about whether or not this new program will be a good fit for him. I’m sure I will have more to say in the coming weeks and months. Maybe we’ll need yet another solution, but maybe, just maybe, he’ll find his tribe there.

There Once Was a Boy Named Lucas Alexander: A Beginning

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(Image description: black and white photo of a four-year-old boy with short hair, bright eyes, and a slight scar on the bridge of his nose, nestled inside of a blanket fort with stuffed animals. He looks directly into the camera and smiles with closed lips. His right hand is cupped on his chin; his right pinkie finger touches the corner of his mouth.)

When my son was 5 years old and in kindergarten, I used to tell him *social stories. Once a week, every week for about six months we drove an hour in each direction so he could go to an Occupational Therapist who specialized in sensory therapy. Inevitably he would have something to process in the car, something that had gone wrong at school, some way in which he was stymied as he attempted to learn how to behave in “expected” ways. Kindergarten was brutal for him, but we’ll get to that later.

I started each story with “There once was a boy named Lucas Alexander.” Lucas is similar to his first name and Alexander is a derivative of his middle name. It’s a name that is close enough to his own to inspire kinship, but dissimilar enough for him to buy into these stories being about someone other than himself. Lucas Alexander got into all sorts of mischief. My son was constantly baffled by how Lucas Alexander’s life seemed so similar to his own! If my son lost control of his body and hit another kid because his arms were flailing, Lucas lost control in a similar way. If my son got in trouble for climbing everything because he needed space and quiet, so, too, did Lucas.

At the end of every story, I would ask my son for advice. What would you tell Lucas to do in this situation? How would you encourage him? And we would problem solve together, coming up with ways in which we might help Lucas feel more in control of his environment. We validated the difficulty of each situation; thought / talked through multiple perspectives; and most importantly, we comforted Lucas because we knew he was miserable, too.

I’ll admit that I didn’t really know what I was doing; I literally made them all up as I drove. I was desperate for a way to help my child as he (mostly figuratively, sometimes literally) hit the wall nearly every day in his traditional school setting. My then-partner (now my husband) suggested social stories as a way to help my son process his experiences. They did help, at least for a while. Many, many tools we have tried help for a while. My son’s brain is insatiable. Once he understands a construct, he has “conquered” it and needs to move on. It took a couple of years for my son to realize that these stories were about him, and once he did, the stories no longer held the same power for him. I don’t tell the stories anymore because he is able to process in different ways now. But he remembers Lucas Alexander with fondness.

This is a blog about the ups and downs of raising a twice exceptional child, a child who is both gifted and learning-disabled. I know more now than I did when he was 5 about how much space he needs, how much recovery time he needs after a sensory-rich experience, how certain activities are likely to cause overload and are best avoided unless he initiates them. I know more about how his giftedness predisposes him to a certain learning style. I have learned more about Autism and Neurodivergence (terms that are not synonymous, and if you are interested in knowing more about these and other key terms, you should definitely read Nick Walker’s “Neurodiversity: Some Basic terms and Definitions“), although I’m not an expert. I have learned that when he experiences difficulty, it is usually fueled by “can’t” instead of “won’t.” I have learned that what he craves most is someone to listen. (Don’t we all?) After years of advocating for my son in school settings–sometimes successfully, and other times not so much–and experiencing with him how our society doesn’t even come close to graciously accepting difference, I have developed a deep certainty that I would (to paraphrase the mantra of Parenting Autistic Children with Love and Acceptance) rather change the world than change my child.

I am an academic by training. I have a Ph.D. in Musicology and taught at a public university for ten years. I am also a writer and editor. I am not “that kind of doctor,” and I’m certainly not an expert in disability advocacy. But I can write, I can read, I can do research, and I can learn. I can admit my mistakes and question my ableism. I can share what I learn with others, and I can add my voice to those who work tirelessly for acceptance (not awareness!), love (not hate!), and understanding (not fear!).

*Social stories are a common tool for therapists, teachers, and parent-caregivers who work with children who are on the Autism spectrum or have ADD / ADHD. Learn more about how to construct your own social stories here.