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.

 

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“I guess I’m done for the day because I’m stupid” or: How not to coach swimming

Nearly a year ago to the day I blogged about my frustration with my son’s swim coach. To wit: I had written in advance to request simple accommodations and to give the coaching team advance information about my son’s preferences. The coach took no notice of the requests, assigned him a very strict assistant coach, and he was kicked out of the pool on the first day. It was a struggle to get him back to the pool the next day, but I’ll give the coach credit: after I sent her a very irritated follow-up message, she re-assigned him. It took a week, but we finally landed with a Wonderful Assistant Coach who worked with him for the rest of the season. He “graduated” from the first level of swim team and over the winter looked forward to moving up to the next level in the swim team.

We had our back-to-season parent meeting over a month ago. I spoke with the head coach in charge of my son’s new level at the meeting. Told him straight-up: my son is autistic; he needs accommodations. What’s the best way to communicate with you about this?” He told me to email him. Swim season started 2 weeks ago, and a few days before the season started I sent the requested email. In case this might be helpful for other parents who are seeking accommodations for their kids outside of school, I’ll share the email with redacted names here. I also want to share this because it’s important for the world to know that “accommodations” are not difficult. I’m not asking for the moon.

“Dear Coach [Name Redacted],

I’m writing to give you some advance information about one of your new polliwogs. [My son] is autistic. Certain things are easy for him; others are not, and some of those “not” issues could very well come up in practice, especially in the first couple of weeks. I’m copying Coach [Other Name Redacted] so she can share anything she might remember about working with [my son]. [Wonderful Assistant Coach] was his assistant coach and was an excellent fit; she, too, will be a good source of information. I hope you can share this information with whatever assistant coaches will work with him. It’s been our experience that he struggles to adapt to new activities but does well / better once he’s used to the environment. So the first week is crucial, which is why I am giving you this information up front.

My son is very intelligent and has a wacky sense of humor. He’s funny and silly, and can come across as disrespectful, especially to people who don’t do silly / funny / sarcastic as much. But he lives for word play. When / if he pushes back about anything, the best way to diffuse him is with humor.

He’s completely uninterested in competing, so this team is all about the love of swimming for him. He shuts down in the face of everything competitive. That may change, but that’s where we are now. We do plan to come to meets this summer so he can gradually become accustomed to what that’s all about.

He sometimes needs repeated directions; verbal directions are hard to process–especially when he’s getting so much additional sensory information–and as a result he can appear like he’s not trying or is deliberately trying to go against instructions. In truth, it can take time for him to process some things. But once he has them in his body, he remembers.

He is very uncomfortable when people touch him, except for close family members. Even I have to ask before hugging, etc. We realize that coaches will occasionally need to guide his body. We found last year that this works best by first asking him before touching / guiding, and if he’s uncomfortable, demonstrating instead until he’s
comfortable.

Transitions are difficult. I’m glad you’ve placed him in the final practice session of the day for because it’s often difficult for him to get out of the pool at the end of his time slot. Perhaps we can continue to use this time strategy as the season progresses?

When he is stressed / anxious, his reaction is opposition. There may very well be times when he simply needs to be done early, and that’s fine from my perspective. We’re encouraging him to advocate for his needs so he can learn to soothe himself before blowing up. If he asks for a break, he really does need a break. He’ll rejoin when he can.

I’m always conflicted about sending these messages in advance because they paint my kid as a problem child. But I’m a special education advocate as well as a Mom, and we’re very pro-neurodiversity in our family. We prefer to ask for the necessary accommodations up front. My son is, in fact, very open about being autistic and is proud of who he is. He’s the kind of kid who can grow up to be a world changer;
he’s got just that kind of brain, creativity, and hyper focus when he needs it. He’s hilarious and well-read and sees metaphors everywhere. But taking direction and dealing with people are both still difficult for him. I’m hopeful swim team this year can be a continued place for growth and fun, and more good days than difficult days. I’m happy to be a resource as the season progresses.”

I had no response to this email, but his first 2 weeks of practice were great, primarily because he was again assigned to the same Wonderful Assistant Coach. But today was a transition day: he moved up again, which meant new pool, new time of day, longer practice time (from 30 to 45 minutes), and…new coaches. Guess what happened? The new assistant coach he was assigned to kicked him out of the lesson time just before the end because “he wasn’t listening.” I had a little chat with this coach at the end. It turns out that she’s a novice coach (this was her second day!) and she knew nothing about him. Nada. She had not been prepped. She had no idea she needed to ask before touching him. She had no idea he is autistic. That email I sent in advance was once again worth nothing. And so, unfortunately, I had cause to send yet another email to the coaching team.

“Dear Coach [Name Redacted],

My son had a great first 2 weeks with [Wonderful Assistant Coach]. Today was his first day at the new pool with new coaches and a longer time slot. I expected a few bumps, especially since he was going to be with a new coach, but I hoped, since I took great care to delineate what he needs in terms of accommodations, that he would at least have a positive first session today. Once again, however, he was kicked out of the pool before the end of the lesson time because the coach did not know how to deal with him. (This happened to him the first day of swim team last year, too, despite my requests for accommodations in advance.) As he got out of the pool he said to me “apparently I’m done for the day because I’m stupid.” He is now convinced that he cannot succeed. Please understand that my son has been kicked out of the first day of EVERYTHING–after school programs, sports teams, summer camps, etc.,–because “he doesn’t listen.” Yet no one seems to heed my advance information or observe the very simple suggestions I send. This takes a pretty heavy psychological toll on my son. I was hoping for different outcomes this year. I would hate for him to give up on the team and on swimming because of lack of accommodations. His disability is not visible but is real.
I had a chance to talk briefly with the coach afterwards, and she was surprised to hear that he is autistic. She asked if there was anything she could do to work with him and while I’m glad she’s open to working with him, I’m frustrated that she wasn’t given this information in advance. (I asked her to contact you.) She also told me it was her second day, and I’m a bit perplexed that a swimmer with special needs would be paired with a novice coach. I don’t know how the coaching is organized, but is it possible to purposefully place children with special needs with more experienced coaches, or at least give them the necessary information about particular children in advance? [This swim team] is such an awesome organization, but if we want it to be an inclusive organization, then accommodations really need to be honored. 
I realize that not everyone knows about how to work with autistic kids. But what we ask for is not extreme, and my husband and I are happy to offer further support and coaching for the coaches. I know you have other autistic kids on the team; the accommodations we request for [my son] will help more than just him. I hope to hear from you before tomorrow’s practice about whether or not the coaches will be able to work with him in the new environment.”
I’m still trying to figure out what to do next, particularly if the Coach doesn’t respond. And I’ll have to see how my son feels in the coming days about actually going to practice. Also, I’m really, really angry. But they’ve picked the wrong family to ignore. At the very least, the organization’s Board should expect to hear from me soon about developing an inclusion policy and training the coaches to work with disabled kids. Accommodations for some leads to a better organization for everyone.
#DisabilityJustice
**Update, next day: The head coach did respond to my email and apologized for the rough first day. It turns out that the assistant coach is not a novice at all; she’s been coaching for 3 years for this team. She referred to yesterday as her “second day” because she just came back from college and has only been back with the team for 2 days. so there’s that at least. The head coach has passed my accommodations request on to the middle management of the coaching team that works with this group, so everyone should be in the loop now. Apparently the coaching team was running late yesterday, so there wasn’t time to share information about the swimmers. So here’s a PSA for everyone who teachers / coaches / supervises kids: info about the kids who need accommodations needs to be your priority. Don’t leave it until the last minute. A kid’s self-esteem might be at stake.
I am, of course, skeptical. There will still be bumps. And I’m still convinced that this shouldn’t have happened at all, and certainly not 2 years in a row. That whole “it’s easier to ask forgiveness than for permission” DOES NOT WORK when we’re dealing with accommodations. Take note of this, world.

Card “tricks” and self-regulation

I recently came across a website with a bunch of card games that are all about math, and yesterday, I pulled one of those games out to “play math” with my son. I thought it would be fun to teach him a math trick, so we tried this one. (Don’t tell my husband about this, because we want to “trick” him later!) I had him pull a card, guided him through the first several steps, and then correctly guess his card, the Queen of clubs. He was entranced and wanted to try to trick me. So we reversed our roles, I put the instructions in front of him, and then…

  1. Hilarity ensued because I kept messing up the simple operations. Not on purpose. He kept having to correct my math. LOL.
  2. He promptly constructed a formula to describe how the math operations worked. He’s a global thinker like that.
  3. He scolded me for not reading the final step to him when he had been the “trickee” and I had been the “tricker,” and had trouble following the directions for the last step of “tricking” me because I hadn’t initially modeled how that step works. Naturally, since I wanted to “trick” him, I had done the last step in my head. Why I might want to withhold this information didn’t make sense to him. But now it was his turn, and as is often true for him, doing a thing once establishes the pattern for how it should always be done, and adding steps is hard.

We tried a couple more times and switched roles back and forth. He was delighted when I “guessed” his card but he couldn’t quite get the hang of “tricking” me and got so frustrated that he headed upstairs for a break. But as he left the room, he said: “it’s interesting that you struggle with the math steps along the way, and I struggle with the solution at the end.” Isn’t this great? He was able to quickly process what had happened and summarize it very succinctly. He noticed that he’s not the only person in the room who is in need of skill building, which is a natural segue into honoring each other’s strengths and helping to complement the strengths of those around us and build an interwoven community of respect. And then he spent some time by himself with his legos, with no pressure to re-engage until he was ready. (And I got time to read. YAY!)

While he was upstairs, I was struck with the realization that if he had been at school, it would have been extremely difficult for him to recover after getting to this point of overwhelm. He needs only time, space, and favorite things–not hard to provide–but the pace and overwhelming sensory input of a school environment meant that he constantly had to try to self-regulate in a very challenging environment (and when he couldn’t, he felt broken). I gain new insights into why homeschooling is such a good choice for him right now with each passing day. After he felt better, he begged to work on Spanish (!), spent some time thinking about physics with one of his favorite game apps, and gave me a run for my money in a Scrabble game. He gravitated to and used the tools he needed for self-regulation, a complicated process for any 9-year-old, but one that is easier when the kiddo has space to be himself.

We’ll keep trying the “trick” when he’s up for it, mostly because it’s a cool way to play with math (and I sure need the practice). And the added “treat” (too obvious for a Halloween blog post?) is that we get to practice expectations in social interactions in what I hope is a non-trhreatening way, and we both get as much time as we need afterwards to process what we just learned.

“At school, I feel broken”: Reason #42 why, as of Monday, I will homeschool my son

A few months ago, I wrote about my son’s new school placement, a Special Education program for children with more “behavioral support” needs than a zoned school can supply. (Translation: “your kid is a handful and we’ve exhausted our resources.”) I expressed my hope in that blog that my son would find his tribe, peers with whom he could share the challenges of being a twice-exceptional kiddo in a public school. After 8 weeks in this program, I can safely report that he has not found peers, and he is more stymied than ever by expectations that he behave in a certain way. There are other kids who share his “behavioral” challenges, but there are, as far as I can tell, no other gifted kids in his class, and he has not yet been allowed to return to the gifted classroom.

As is true of lots of kids / people, my son’s brain clicks in before his body follows directions, but he also has the benefit of a surprising vocabulary and impressive cognitive skills. If a teacher directs him to do something, he’s just as more than likely to ask by what authority the teacher dares to ask such a thing as he is to comply. On his first day of school, he responded to continued requests that he raise his hand before speaking and asking questions with “you’re getting in the way of my Freedom of Speech!” This sort of self-advocacy is going to serve him well when he’s an adult, but it’s not well-received now, especially in a system that values / teaches / demands compliance. So here’s the wall he’s up against: learn to mimic behavior you think is more appropriate to sheeple, or fight an oppressive regime; do what the adults tell you to do, or negate your self. (I can hear you thinking “no 9-year-old thinks like that!” Mine does, if in different words. He’s awesome.)

And what about the argument that in order to learn to get along with other people in groups he needs to learn to get along with other kids at school, to “control himself” in this classroom so he can do the same in other environments? To that I say: there’s “getting along” with people and there’s compliance. What is required at school is compliance, following adult directives with no questions, moving with the masses in a predictable rhythm, never causing a stir. Maybe that’s a bit extreme, but the program he’s in right now is all about learning compliance, and I don’t want my kid to learn compliance. I want him to learn to fight for himself and others (although maybe with more tact, strategy, and well-developed talking points). I really love Amy Golden Harrington‘s take on this, especially as it relates to the asynchronous development of 2e kids: “Social conditioning and school indoctrination get into children so early and are reinforced by the adults around them without examination as to its efficacy. Mainstream parenting and schooling work in concert to suppress individuality and promote conformity. So many children are unaware of what life could be like when they are respected for who they truly are not how well they conform, behave and fit into the box.” (See her essay “I Forgot to Socialize My Kids.”)

Compliance is especially fraught with peril in Special Education. What is “expected” (such as behavioral objectives) is ableist for many reasons. The most problematic, ableist issue we’re dealing with right now is this: kids who can’t “behave” should be taught to “behave” before they can be allowed to do brain work. Kids who can’t “behave” and disrupt the learning of other kids need to be removed and segregated from the kids who can “behave” so the kids who can “behave” can learn without interruptions. And we’ve been told (and bought into for a while) that “his behavior is getting in the way of his learning.” Note the logical fallacy at the core of this angle: one can’t learn unless one “behaves” in expected / accepted ways. So how do I reconcile that with him teaching himself *everything* about the presidents at age 5 whilst bouncing off everything solid enough for a good bounce? I call foul. He learns when expectations match his skill set. He doesn’t check the bevavior-meter before deciding what to memorize or investigate next.

So this has been my son’s path: gradual addition of restrictions ultimately ending in a segregated classroom of just a handful of kids who go about their days constantly getting in trouble because expected behavior is not available to them. And they learn new tricks from each other and have conversations about how they ended up in this place. When my son shares these conversations with me, they sound suspiciously close to “what are you in for?” These kids go to school each day to practice behavior. In other words, they go to school all day to practice the thing they struggle with most. And while ableist society might argue that this is a good thing, an environment set up to help kids learn control, we need to recognize that this is a deficit-based education for kids like my son (and probably many others), kids who could do more with their brains if not constantly under fire for behavior. We should all have the right to a strengths-based education, don’t you think?

So tomorrow we will withdraw him from public school. This has been a complicated decision, made difficult because we–his parents–recognize that his current placement is not an oppressive regime in and of itself. The teachers are very, exceedingly patient. Kids get sensory breaks, and lots of them. Kids who need to stim get to stim and are not shamed for it. As I wrote on Facebook a few weeks ago, I went to visit my son in class one day and found a spinning boy just inside the door. He got up several times while I was there to spin some more, and sat down to do his work when he was done. And on another occasion, another visit, I overheard a teacher talking to this same boy about how much she liked to spin when she was young because it felt good. There was no shaming of this child. There’s yoga during the day, and meditation. Kids learn calming techniques (that is, calming techniques in addition to the stims they’ve already developed for themselves). There are games. There’s no ABA. And the teachers encourage self-advocacy; my son has not been denied the opportunity to speak his mind when he has had the presence of mind to ask for the floor in an appropriate way (meaning not yelling out in the middle of class, not interrupting, etc.) These are GOOD THINGS.

But my son feels broken at school, and that is enough for me to seek a different path. I will be the first to admit that my son has things to learn about getting along with people. Don’t we all? But these lessons don’t have to be coupled with behavioral compliance. This timing is especially ironic; tomorrow I begin intensive training as a Special Education Advocate, and I feel like there’s no place for my own son in our education system. But I’ll have to deal with that later. For now we are going to try a freedom-to-brain approach, and we’ll see where it takes us.

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.

This just in: Accommodations are not rocket science!

Yesterday I was raging mad. Crying mad. Helpless mad. Yesterday was my son’s first day of practice with the neighborhood swim team, a really lovely local organization staffed by volunteers who care deeply about kids. I stood in line on a hot morning last month to secure one of just a few spots for newbies. I paid the registration fee. I went to the orientation sessions. I bought the gear and the spirit wear (and I now know what a dry-fit tank is). I met the coach. And then I did what many parents of kids who need accommodations do in advance of a new activity: I emailed the coach to give her a heads-up about my son’s strengths and difficulties, when he might need extra help and patience, and above all, how important it would be for him to have a good first practice. Nothing too intense; just a brief “about me” in the third person, but enough–I thought–to flag her attention. She responded graciously and I was hopeful.

So we went to practice. My kiddo was eager and even initiated conversations with other kids. The coach put him in a group of 4 with an assistant coach. My son did a fantastic job of sitting and listening (not easy skills for him) and he got in the cold water when it was time. The kids next to him were shrieking (I was ready to leave because of the noise) but he held it together and mostly followed directions. But he got increasingly upset as the coach touched him to help him get his body in good swimming positions. He insisted he could do it himself; she insisted he needed help and held on to his body even as he pulled away. He escalated. He turned his back on her and she told him “look at me, LOOK at me, LOOK AT ME!” He did, but he was angry now and began to lose control of his words. She told him he had to sit out for the rest of the session. And by the way, he was the ONLY kid who had to sit out. I don’t have enough fingers and toes to count how often this sort of thing has happened on a first day of a new activity. He’s always the “disruptive” kid, the kid who sits out.

I watched all of this with sinking heart and rising blood pressure. I hauled butt to the edge of the pool and angrily asked the assistant coach if she had received any information about the accommodations my son needs. Nope. Nada. The head coach came over and I told them both quite pointedly that they needed to discuss the information that I sent them last week before we met for the next practice (today). And I gathered my melty child and stormed off. Not my best moment. But once again, no matter how much preparation I put into a new situation, the People in Charge (PIC) did not pay attention to a very simple request: please be more patient with my child and recognize that when he appears defiant, he actually needs more support. He might need a break. He might need more verbal explanation and less physical “help.” He most certainly needs you to listen and respect his words. He certainly does not need a time out because he can’t / won’t look you in the eyes.

(Because I know this story might trigger strong emotions, I’m going to spoil the ending and tell you now that this story ends well. I hope you will stay until the end.)

So for the rest of the evening my son hated swimming, and the coaches, and his dinner, etc. I will take part of the blame here: it didn’t occur to me to prep him for touch; I’m not particularly fond of random people touching me, but touch doesn’t send me over the edge. Also, I haven’t taken swimming lessons in almost 4 decades so I didn’t think about it. We spent the evening talking about how coaches usually do touch your body to help you feel where you are in space and use your body efficiently. And we talked about what would make it ok: asking first? only using touch when absolutely necessary? speaking directions and visually illustrating them instead of touch? Yes, he said, a combination of all three. So we agreed that I would talk to the coach about these specific things and we would all try again.

And here’s the happy ending: swim practice today was wonderful. I talked to the head coach this afternoon and she LISTENED. (I’m super happy with her tonight!) She reassigned him to a different assistant coach who prepped my son for each touch: “I’m going to hold your arms out now,” “I’m going to put my hands on your back,” etc. When he said “I want to do it myself,” she let him, and she offered verbal feedback instead of touching him. She gently reminded him about safety rules when he got squirmy. She spoke softly–or as softly as she could in a loud swimming pool space.

Please note how simple these accommodations are. His accommodations don’t need to be elaborate, but they do need to be personalized and consistent. He doesn’t need to be isolated in private lessons (although some kids / adults might need that). He doesn’t need an elaborate token economy system. He doesn’t need excessive praise. He simply needs the PIC to listen to him and respect his requests whenever possible. He needs the PIC to presume that he is competent enough to ask for what he needs, and to get over the idea that his behavior is manipulative and needs to be squashed.

He went to bed happy and confident. He loves swimming again.

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.