After seven years of parenting a child enrolled in the local public school system, I’ve come to understand that, at least in our neck of the woods, each new grade begins with an automatic and inherent “do-over” mechanism in place. Regardless of how many copies of reports, summaries of treatment, useful examples, or offers to provide reference materials as well as funding to train our school’s teachers (i.e., extend free continuing education credits) regarding the unique needs of children with Asperger’s Syndrome, every year begins as if it were my child’s first foray into the building with a shocking and unexpected diagnosis.
It’s been suggested that informing my son’s new teachers about his quirky learning style may be considered a violation of his privacy…despite the fact that, as his legal guardian, I have personally requested such administrative divulgence. Whereas offering students a clean slate with which to begin the year may appeal to some families, I find a solid heads-up to be a valid and useful educational tool for the individual tasked with teaching my child. Let’s face it, folks: first impressions can have a very lasting impact. Without advance notice of the fundamental need for situation-specific understanding, patience and a collection of strategies with which to support, instruct and reinforce the academic and social efforts of a child with an autism spectrum disorder, lack of preparation for a student’s “autismness” can have tremendously negative effects on a child’s self-esteem and motivation to learn. Seven years of public school, people. SEVEN YEARS. Been there, done that.
The way I see it, an ethical realtor would advise his or her client that location, location, location is a key consideration when purchasing a home; the parent of a child with Asperger’s Syndrome recognizes the necessity of context, context and more context for properly, appropriately and compassionately educating his or her child.
Thus, after all these (seven) years, I’ve found a useful solution that eliminates disillusion and promotes interdisciplinary camaraderie. Each year I begin my teacher notification with the following email template, updating it as appropriate to my son’s age, pertinent behaviors and current goals. I find sending this email the day before “Back to School Night” opens a useful dialogue within the perfect window of opportunity for both the “clean slate” and “FYI” approaches, while simultaneously saving time, a bucket load of tears, a flurry of confusion and oodles of frustration secondary to unintentional ignorance. Been there, done that, too. So if you find yourself searching for a voice to communicate your quite valid and well-documented concerns, feel free to use mine as you wish. Then we’ll have been there and done that together. Power to the Parents!
First let me introduce myself. I’m the nutty mother from whom you will likely be receiving regular emails over the next year. I apologize in advance for making a pest of myself, but: 1) it’s my job, and 2) I’ll try to keep all future communication brief as well as humorous. This will be the only soapbox monologue I send you; I truly value your expertise and tight schedules, so I won’t take up too much of your time. Straight and to the point – that’s just how I roll.
I am writing on behalf of my 13-year old, 7th grade son. He is funny, enthusiastic, inquisitive, bright, and a stellar student. He is incredibly artistic. He is a living, breathing film and TV database. He has a memory that can rival any elephant, so be very careful what you say. And chances are you won’t soon forget him…partially because he’s a super kid, and probably because my child also has Asperger’s Syndrome.
For any of you unfamiliar with this condition, a term sometimes used interchangeably with “High Functioning Autism,” it is a variable diagnosis along the autism spectrum. Bill Gates, Dan Akroyd, Jim Henson and some say Albert Einstein and Sir Isaac Newton had it, and my son is quite happy to be in their company.
In a nutshell, my child comes across as “quirky.” He has some pretty unusual and sophisticated interests about which he knows more facts and figures than Wikipedia. Some topics are entertaining to the average person; some are quite unusual. Not always realizing that his communication partners may not share his interest in, say, the history of the Dutch East Indian Trading Company, my child might not always know when to change the topic or understand that conversation is actually an interactive sport. As such, he may automatically and unconsciously dominate the discussion with the potential to explode (in words, of course), mainly because it is literally too painful for him cognitively, emotionally and physically to filter or withhold what he feels compelled to share with the world.
Like every other 7th grader you teach, my son is learning to navigate the teenage social landscape of his generation, to modulate his unpredictable hormones, and to develop a sense of himself as he is and wants to be. But unlike many of his peers, he joins the game with a handicap that is neither tangible nor visible. So whereas he is frequently thought to be “charming” and “interesting” by adults, he is often considered “weird” or “annoying” by his peers, and he truly doesn’t understand why. This semi-meta-awareness can be helpful in learning to communicate appropriately and effectively, but it is also a frequent source of frustration and confusion.
On the other hand, my son is as interested in social interaction as he is challenged by it: the subtle non-verbal cues and inherent unwritten rules of communication that are second nature to you or I can be completely unnoticed or misunderstood. You might observe that my son frequently gets “stuck in a loop,” so to speak…kind of like a record skipping, for those of you young enough to remember LPs and 45’s. Whether the momentum is driven by emotions (confusion, offense, anxiety, fear, excitement, enthusiasm, anger, happiness) or topic of discussion (Elvis, pirates, the James Bond franchise, or a 35-year history of Saturday Night Live), he easily gets caught in a perpetual thought cycle and may need assistance pulling out of it.
On a physical level, my child’s eye contact is either sketchy or at times opposingly intense. He can chatter on loudly and rapidly, and frequently will close-talk better than any Seinfeld character. He can easily morph from Nervous Nelly to Chicken Little, literally expecting the sky to fall at any moment. During especially difficult times, my son will attempt to self-soothe these anxieties by drawing in his notebook, playing with his writing instrument, or via ticks such as picking his lip or scratching behind his ears…we’ve been working on these for several years now in terms of hygiene and social appropriateness, but it hasn’t been easy. The up-side is that these un-poker-faced behaviors are a clear indicator of his stress and distraction level, and can be useful in identifying and helping him manage his responses to said stressors, as well as re-direct him back to the lesson at hand.
Added to my son’s social challenges are concurrent diagnoses of ADHD as well as a metabolic condition. He takes medication for both, but it’s a slippery slope managing appropriate dosing, especially during puberty. Issues of mood, appetite and sleep-wake cycle, just to name a few, can be affected by any or all issues, so I hope you will notify me if you see any changes in or concerning behaviors from my child while he is in your company.
My son, as an individual, is much more than a few medical diagnoses. At bare minimum, he is hilarious, creative, and has a perception of the world that’s all his own. As his mother I love him for so effortlessly just being who he is. But it’s not easy for him to be him when he’s not privy to the rules of the game, or when he feels he’s not in control of his own behaviors…not that it keeps him from bravely trying over and over again.
Scared yet? You shouldn’t be. He’s a great kid. He’ll probably finish all his homework on time, follow all the rules (did I mention he’s the honorary sheriff of the rule police?), actively engage in classroom discussion, be prepared for pop quizzes and earn honorable grades in your respective subjects. Our child actually WANTS to learn and will be the SpongeBob Squarepants of his class, soaking up as much as you can dish out. But don’t be surprised when he marches to the beat of his own drum corps, as well as gets lost in marching band formation in the process.
In conclusion, I have a few reasonable (I think) requests:
- Please be concrete and specific with your instructions to my son, otherwise he may not understand exactly what is expected of him or an assignment. That being said, be prepared for him to interpret everything you say literally, well, literally.
- It’s tough, but please try to keep in mind my child’s context when he says something that may on the surface seem disrespectful, argumentative, blunt or curt, rather than jump to the conclusion that it’s personal; it might make for the perfect learning/teaching opportunity regarding the subtleties of social interaction. He could really benefit from sensitive guidance and instruction when he uses “bloopers,” as we affectionately say.
- If you see any behaviors that seem out of the ordinary, any significant mood changes, or something that just catches your eye and seems off – even if you can’t put your finger on it – I would greatly appreciate if you would shoot me an email and let me know. As I noted earlier, the physiological balance of his respective medical issues require vigilance, and since I am neither able nor desire to follow him throughout his entire academic career, I’m relying on you to fill me in when he needs help in his everyday environment.
- Despite my own accounting of his idiosyncrasies and challenges, let’s not forget that my son is not defined by anyone’s checklist of observable behaviors. My greatest hope is that you think I’m a crazy, overprotective mother…nothing would make me happier. You might even be questioning if his diagnosis is accurate, that you would “never have known” that he has Asperger’s had you not received this letter. If so, this is music to my ears for two reasons: First, it provides reassurance that my son is developing well and finding a comfortable place in the world. Second, it offers you an opportunity to better understand that autism spectrum disorders are just that – slight deviations along a continuum, with no two points, or in this case people, being the same. His is only one of the many faces of ASD, and if it’s his face that can perpetuate open-mindedness, understanding, sensitivity and acceptance, he’s doing a great job just by being your student.
Thank you very much for taking the time to read this. I’m happy to loan you any materials (books, articles, films) about ASDs in the teenage years, in the classroom, or just in general if you’d like to learn more. I also welcome any questions, comments, inquiries, or communication of any sort. But no chain emails. I’ll delete those. Again, that’s just how I roll.
Wishing you a great year, and much appreciation for your support.
Very truly yours,
My son’s mom