Things You Should Know and Do Before Your Student’s IEP Meeting

I first published this back in 2013 (under a different title), but I think it’s worth a re-run (with some updates). While the advice here applies to any IEP, it’s probably most effective for IEP meetings that follow an initial IEP.  

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Recently, my husband and I went through a long IEP (that’s “individualized education plan”) process for our daughter. You’d think that, having done this a few times now, we would know what we were doing when it came to the IEP, right? Well, for reasons like stress, fear, worry, ignorance (but not the willful kind) and avoidance, it took us a (long) while before the light bulb in the attic finally flipped on. It also took the advice of some wonderful, giving souls who walked in our shoes once, too. And, I promised each one of those wonderful souls we would pay their good deeds forward. So, here it is: Things You Should Know (and DO) Before Your Student’s IEP Meeting.

Educate Yourself

Parents and caregivers find the IEP process daunting for many reasons, but two big ones stand out for me. The first is that the IEP process is psuedo-legal. Many legal rules prescribe what can and cannot be done to create, implement and change a student’s IEP, and it’s essential that you learn and follow these rules. Make sure the school district provides you with the required IEP procedural safeguards for parents, then read it! But, don’t rely solely on district resources. Consult other reliable, parent or student-focused resources as well. I recommend the series of IEP advocacy books written by Pam and Peter Wright. A student has certain rights, parents/caregivers have certain rights and school districts have certain rights. Every IEP team member also has obligations. Make it your business to know what those are.

Second, the IEP process involves making decisions about a student’s educational needs. If your student is newly diagnosed with a condition necessitating special education or learning accommodations, you may still be orienting yourself emotionally and intellectually. When IEP team members start talking about “generalizing” skills to the “mainstream” curriculum, using “reinforcers” to motivate performance, the “common core standards,” or providing a “slant board” for writing to assess “visual acuity,” this new, important-sounding vocabulary may reinforce feelings of inadequacy AND give the speakers an aura of trustworthy expertise. Don’t let this one-two punch take you down for the count or lull you into a false sense of reliance. There are many, many reliable resources out there — resources that don’t require a degree in cognitive psychology to read — that can help you become conversant in the vocabulary of special education and be an effective advocate for your child.  Also, don’t be afraid to ask questions of other IEP team members. Sometimes, the use of jargon is a habit and done not to confuse or mislead you but with the presumption everyone knows what the speaker means.

Get your ducks in a row!

Plan Ahead

Ideally, a student’s IEP should be the product of a collaborative effort by the IEP team members. Team work means collaboration; collaboration means supporting one another and seeking everyone’s contribution.  Too often though, a school team member hands the parent/caregiver team members the proposed IEP – already drafted and right before (or even at) the meeting. That doesn’t launch the IEP meeting on a collaborative note. I’m sure there are times when this is done deliberately; my experience, though, is that a lack of resources (read: only 24 hours in a day and too many IEP meeting clustered together) is the predominant cause of late-delivered IEP drafts.

To avoid feeling sandbagged, be proactive and plan ahead. During the benchmark periods in your student’s IEP year, make sure to follow up with his/her teacher to request data and assessment for that period.  This will do two things:  it helps you ensure satisfactory progress toward the goal (or identifies a need for adjustments to a goal), and it prevents you from having to interpret trends in an entire year’s worth of data when it comes time for the next IEP cycle.  Also, tell your student’s classroom teacher that you want to help draft the proposed IEP, and set a meeting date to do that a couple of weeks before the IEP meeting. Come to this collaboration meeting prepared with a list of the things you think your student is doing well and things you’d like to see him/her work on based on your observations, input from your student’s outside medical/therapeutic team, and the data you’ve collected from school over the year.

When you roll up your sleeves to get to work, don’t forget to open your mind to the real chance that you and your student’s school team members have divergent experiences with your student.  You and school staff members each see your student in different environments for a good deal of time most days, so it is expected that your student may respond differently in each environment given variances in stimuli and expectations. For example, Helene is far more likely to share a coveted object willingly when she is anywhere but home; at home, sharing is NOT caring according to her.  So, if I come to the IEP drafting table, seeking a goal to improve social communication around sharing, the school team members are likely to assert that such a goal isn’t necessary, and it’s likely their data will support that.  Conversely, Helene frequently engages me, her father and her brother in decent communication exchanges, asking to play a game, asking for help with something, or maybe even telling about her day.  However, this rarely happens at school.  The school team members always push for a communication goal for Helene, and to understand why, it is critical that we listen to and hear their input regarding observations of Helene during the school day.

Get the WHOLE PIE!

Oooooh. Whole IEP. I thought you said whole PIE. My bad.

Care About the WHOLE IEP, Not Just the Services Part

For the first two years Helene was in special education, my husband and I worried only about the part of her IEP that listed where she would be placed and what type of services or accommodations she would receive (e.g., self-contained classroom, speech therapy, occupational therapy, etc.) – the FAPE part. (That’s free, appropriate public education. Welcome to the land of alphabet soup …)

The “Present Levels of Educational Performance” (or some such variation) and actual goals/objectives section of the IEP barely registered with us. We figured that as long as Helene had the services she needed, we’d leave the implementation to the professionals, who probably knew better than we how to actually execute the plan. This year, though, we knew our meeting wasn’t going to be about Helene’s services, because those weren’t going to change.

When we finally really read the goals in her IEP, imagine our horror as we realized we had it all WRONG. The entire IEP is important, but arguably the most critical piece is the assessment of your student’s present levels of academic and functional performance (PLOP), because that assessment determines the goals, and the goals (and, more specifically, the benchmarks for progress toward goals) determine the services.

With that wake-up call and the profoundly important support of my fellow IEP-meeting warriors, here’s my best advice for tackling the PLOP and goals portion of the IEP:

  • Read and scrutinize the Present Levels of Educational / Functional Performance (PLOP) section. Identify each skill described (good or bad) in the PLOP, and write it on a separate line of notebook paper or type it into a line on a spreadsheet. (When we did Helene’s list, we typed progress in green and not-so-much progress or regressions in red to help visualize where we were.) Analyze the list to determine whether it paints an accurate picture of where you believe your student’s educational performance is. (Trust me, you are absolutely qualified to do this.) If something is missing, add it. If you disagree with parts, highlight those for discussion. If your student is old enough and capable / interested, get his/her feedback, too, and incorporate it. Again, the PLOP is the most critical part of the IEP. If the entire IEP team is not in agreement on the PLOP, DO NOT move forward. Keep working until the whole team green-lights this section.

To help us, I created this worksheet using guidance from various sources, to help tackle the massive project that is reviewing and revising a draft IEP:  IEP Workbook (Excel document).

  • Read the Goals and Cross-Check against PLOP, SMART, Strangers and Dead Men.
    • PLOP – Review the list of abilities and limitations the team agreed on in the PLOP. Then draft or double-check that there is a goal in your student’s IEP to address each area of need. If the abilities your student demonstrates are improving but still not at grade level, ensure there is a new goal that challenges your student to reach a little higher. If your student is missing an important functional skill, ensure there is a goal to address it. There must be a goal to address EVERY area of need. For some students, that may mean 2 goals. For others, that means 32 goals. There is NO rule regarding how many goals an IEP requires except that the goals must address every area of need. Do not allow school staff to convince you that more goals mean more work.  First, that’s not really even a relevant consideration.  But, more importantly, it is very often the case that your student will work on multiple goals simultaneously and that data collection for those goals can, therefore, also be simultaneous.  In other words, not really more work at all.
    • SMART, Strangers and Dead Men. First, goals should be SMART. Yes, they should be smart (as in a good idea), but what I really am describing here is a short-hand reference to the standards against which goals should be measured:  specific, measurable, action-oriented, realistic and time-limited. A sound goal meets each of these criteria. The chart below explains what each of the SMART criteria means, and you can use to analyze proposed IEP goals (or the goals you offer to the IEP team as alternative goals). 

SMART Goal Worksheet

    • The chart above also explains the Stranger Test, the Dead Man’s Test, the Relation Back Test and the Educational Progress Tests. Any of these will help you determine whether a proposed goal is written clearly enough for ANYONE to follow it. (Except the dead guy. If the dead guy can meet the goal, the goal isn’t really a goal at all.) Don’t underestimate the importance of writing goals so that anyone can pick up the IEP at any time and execute it. Turnover for para-professional staff in special education classrooms is high, and unexpected events happen. Last year, Helene’s classroom teacher was in a terrible auto accident that kept her out for a month. Be sure that the substitute (or substitutes) can read and immediately understand how to implement your student’s IEP. A month is a very long time when your student’s been around for only 48 of them. (For a great primer on how to write meaningful, clear, SMART IEP goals, I recommend Barbara D. Bateman and Cynthia M. Herr’s book, Writing Measurable IEP Goals and Objectives.)
  • Determine Services based on the Goals. Once the team agrees on the goals, the services and accommodations nearly select themselves. Still, there may be accommodations or interventions your student needs beyond what is specifically identified in a goal. When looking at the goals, ask yourself what accommodation would make it more likely your student will accomplish this goal. For us, this was one of the more difficult aspects of the IEP, because we didn’t really know what was available. Call on every resource you have: your pediatrician, your outside therapists, your Regional Center case manager, other parents, social service agencies in your area, the Internet (cautiously), the bookstore or library. Think about the types of assistance you provide to your student at home and how that might also work in the classroom environment. I found two books especially helpful: School Success for Kids with Autism by Dr. Andrew L. Egel, Dr. Katherine C. Holman and Dr. Christine H. Barthold and Understanding Motor Skills in Children with Dyspraxia, ADHD, Autism & Other Learning Disabilities by Lisa A. Kurtz. (P.S. If you’re in the bookstore, check the children’s book section for books such as these. Last place I would’ve looked …)

Confidence is holding up an imaginary wall with your shoulder while wearing pantyhose.

Don’t Be Afraid

Unfortunately, the IEP process is designed more to be antagonistic than to be collaborative. But, it is truly meant to be a project for the entire IEP team. YOU can help make that happen.

  1. Make nice. Make a point to learn something about your student’s teacher or other IEP team members, and let your actions show him/her you remember it. Did he mention a summer trip to India? Pick up a paperback travel guide and give it as a “just because” gift. Did she mention orange as her favorite color? Have your student make a special project and frame it in orange-painted popsicle sticks. You get the idea. Send a message that says, I value you as a person and teammate. Preferably, do this before the IEP meeting so that the “just because” part is genuine and not an obvious bribe.  😉
  2. Communicate early and often.
    • Get to know school; let school get to know you. Nothing is harder than getting through an IEP meeting with a room full of strangers who have a LOT of opinions about YOUR student. IEP meetings are often ripe for emotional anxiety, adoption of defensive postures and passive-aggressive behaviors. Don’t let this happen. Collect email addresses, telephone numbers and office hours information for all the members of your student’s IEP team – then USE THEM. If your student has a communication folder (s/he should!), read the notes that come home and RESPOND to them, even if it’s just to say “thank you.” Reach out to team members for advice outside the IEP context. For a while, Helene was “chipmunking” her food in her cheeks – for HOURS. I wrote her OT a note asking for her thoughts on how we might help Helene through this, because I was constantly terrified she would choke on whatever was in her mouth. The OT was thrilled that I sought out her help, she was quick to respond to me, and she had some great advice. In the process, I sent her the important  message: I value the experience you bring to this team.  
    • Help school get to know your student.  One piece of fantastic advice sent my way by an experienced special needs mom was to create a resume for Helene.  This fabulous template was designed by my awesome friend over at She’s Always Write:  SNS Resume (Word doc).
  3. Assert yourself, but stay reasonable. Collaboration means there are not “sides” in an IEP meeting. As soon as you start to view the IEP meeting as a win/lose or us-versus-them proposition, it doesn’t matter how you score the meeting results – your student loses. Without collaboration, your student doesn’t benefit from the group’s collective wisdom on how to create the best environment for access to educational and functional skills. My husband and I went into Helene’s last IEP meeting in agreement that we would demand and get a one-to-one aide for her, because we believed she needed one. Ultimately, though, we left without the 1:1 aide.  Although we made a case for why we believed the aide was necessary, after two hours of discussion, the school team members’ observations convinced us that an aide might actually make Helene’s situation worse. If we hadn’t been willing to listen, we may have pushed hard for something and “won” it only to gain something that really wouldn’t benefit Helene in the long run.
  4. Don’t judge based on a first (or even second) encounter.
    • You may not realize how often a teacher encounters a parent/caregiver who is very angry about and embarrassed by his/her student’s need for accommodation. I hear often from teachers that they would give ANYTHING for parents as involved as we are in Helene’s education … or event parents that would just return forms and voicemails.  So, if a teacher seems callous or cavalier in her initial approach to you, that likely does not come from resentment toward your child or special education in general but from old war wounds inflicted by prior bad experiences with parents.
    • Similarly, remember that teachers are people with all the frailties and quirks being human gives us.  While some teachers are really open and relaxed around kids, they may not feel that so much around adults. Give him/her the benefit of the doubt until you get to know one another. Also, pick your spots. Don’t spring involved questions or start what should be a confidential conversation with your student’s teacher while she’s trying to corral the kids onto busses and can’t give you her undivided or personal attention. And don’t sandbag – as soon as you feel like something merits discussion, discuss it. Don’t hold on to “little” things until you have so many you just unload. Give team members a chance to address your concerns before you assign fault. By the same token, be prepared to swallow just a little pride when it comes to your student. Nobody is perfect. (Except my kid. She’s totally perfect. *ahem*)
  5. Bring a comfort object and a support person. You thought comfort objects were only for our kiddos? Nope. When I go to my daughter’s IEP meetings, I bring coffee in a mug my older son made for me many years ago. It helps me visualize how the IEP meeting would go if we held it around my dining room table instead of around a U-shaped table outfitted with chairs about 10 sizes too small for grown people. That mindset helps me feel less like arguing and a lot more like listening — after all, that’s what I do at my dining room table over coffee. You may also bring anyone you’d like to an IEP meeting to act as a support person or an advocate for you. I highly recommend this. Even if your IEP meetings go smoothly, a trusted friend can take detailed notes for you during the meeting so you can give the team members your full attention. And, even if your student can’t really participate, bring him/her to the meeting. At one recent meeting, I brought Helene due to lack of child care, but having her in the room kept us on our best behavior, because her presence constantly reminded us we had the same ultimate goal: her success!
  6. Listen to your instincts. There are a lot of experts in the room during an IEP meeting, and that includes YOU. YOU are an expert about your child. So, if you’ve tried everything you can to set the tone for a successful, collaborative meeting but the process breaks down (or never really gets off the ground), call a time-out. Take a 15-minute break or a 15-day break. You DO NOT HAVE TO SIGN an IEP with which you do not agree, and you can leave the meeting at any time. It took FOUR separate meetings before Helene’s IEP team finally reached consensus on her goals, and there was definitely some butthurt along the way. In the end, though, I believe Helene’s classroom teacher, her speech therapist, her occupational therapist, and the principal shared our feeling of an enormous sense of accomplishment. We all feel invested in her success now, and we will all feel a lot less defensive if her next round of assessments don’t show as much progress as we’d like. It’s called buy-in, and its value cannot be underestimated. If you can’t get buy-in from where things sit at the moment, take a break, come back with a fresh perspective and try again.

I’m sure there are other things I’m not mentioning that I should. So, here’s a list of other blogs you might want to visit for more on the IEP process:

IEP Season, at Anybody Want a Peanut?

Ways to make your next IEP awesome!, at Mostly True Stuff (when you need a little comic relief from IEP season … and you will)

Are you new to autism? and My child needs an IEP, at Yeah. Good Times.

Pretty much anything ever written over at snagglebox.

IEP without Tears, at Pancakes Gone Awry

One Inch Closer, at Both Hands and a Flashlight

The M-word, at Autism and Oughtisms (the m-word being “mainstreaming”)

Dear School District: My Son is Not Just Another Brick in the Wall, at The Connor Chronicles

Flashback Friday, at This Side of Typical (lots and lots of fun new vocabulary!)

What are IEPs made of?, at Maternal Instincts

Above all, keep your head up. Just as every student is unique, so too are IEP meetings. Take every story of failure or success with a grain of salt. You will learn to cull from them the cautious optimism that will get you through each IEP season. And, if all else fails, I have a great recipe for Chocolate Whiskey Cake with Salted Caramel Buttercream.

She’s So Girly

My grandmother worked for a toy store when I was little, and I benefitted from whatever she brought home.  Perhaps she planned it, perhaps not, but my toys were not gender-specific.  There were as many Tonka trucks as dolls.  I had Lincoln Logs, Bristle Blocks, Lego bricks, and a whiffle bat and ball.  I had a bright red and blue Big Wheel with a hand brake.  My Weebles wobbled, but they did not fall down … unless I deliberately pushed them out of their tree house.  I had Play Doh, paints and crayons.  I had a ridiculous number of Garfield coloring books and stickers.  I made mud pies, played football, rode a BMX bike, and built forts.  I don’t remember hearing “girls don’t do that,” “girls don’t play with that” or anything particularly gender-determinate from the influential adults in my life.  It may have been the coincidence of being the oldest grandchild.  It may have been the coincidence of growing up in a family where the men were outnumbered (out of 11 cousins only 3 are male).  Whatever the reason, I realized as an adult that my family – and particularly my grandmother – did me an enormous favor, because I did not grow up viewing myself as inferior to boys or men.  In fact, up until I was about 13 years old, I sincerely believed I could and would become the President of the United States. As in – the thought did not occur to me that anyone would have a problem with a woman in that role.  We simply hadn’t found the right woman yet, and I would solve that.

Then, Geraldine Ferraro happened.  I was in eighth grade. I was smack in the middle of puberty.  I was a latchkey kid who watched a lot of television. Somehow, I ended up at a political rally for Walter Mondale at which Annie Potts (who starred in Designing Women at the time) spoke. Geraldine Ferraro spoke about things like equal pay, equal opportunity.  I think that is the point on my life’s timeline at which I can mark my first awareness that the road before me might be a little bumpier, a little windier or – possibly – altogether unpaved because of my gender.

There were many experiences between that time and when I became a parent 11 or 12 years later.  From the obvious – a restaurant manager who sent me up ladders to peek up my uniform’s skirt – to the latent – the English professor who subtly but uniformly dismissed female students’ interpretations of male poets.  I learned enough from those experiences to make a deliberate effort to not constantly remind my son of his gender with everything he looked at or touched.  If he wanted to paint his nails, I let him.  When he wanted a doll, I got him one.  When he wanted a PowerPuff Girls throw blanket, I made it happen.

In first grade, he drew a picture of me and of Father Bear.  Father Bear had a long, pole-like thing coming out of his head. I had a long, pole-looking thing come out of my … um … yeah. When asked what Father Bear’s pole was, he told us, “That’s his shocker thingy.”  When asked about mine, he said, “Those are Mommy’s peanuts.”  Horror and pride make strange bedfellows, I say.

Then there came a day, in the middle of Kmart, when my nine-year-old son announced his desire to deck out his entire bedroom in PowerPuff Girls. I balked. He stood before me, eyes and body in pleading posture, with all the gender obliviousness I so longed for him to have. He looked at the chaos of Pepto Bismol-pink and saw nothing but his favorite cartoon. I stood there blinded by the silent movie playing in my head of an endless stream of third-grade boys pointing, laughing and mocking my sweet and loving dude. I couldn’t shake it. I couldn’t find the bravery to say yes. Instead, I said we couldn’t afford the new bedding right then. As it turned out, his interest in PowerPuff Girls morphed into an obsession with Ben 10 (and morphed again and again and again and …), so the topic of the bedding was never revisited. I still wonder, though, whether I would’ve found the fortitude to say yes had he insisted.

Twenty two years after Geraldine Ferraro initiated me into the gender equality wars, I became the mother of a girl. My career made me painfully aware of things like glass ceilings, mommy tracks and boys’ clubs. So, I painted her room butter yellow, slate blue and mint green. I made everyone promise not to buy her pink stuff. There was not a princess anywhere in sight. Her room was filled with stuffed frogs but no dolls. I took her to her first baseball game when she was two months old. She is named after her great-grandmothers, but I loved her name especially because it is both feminine (Helene) and masculine (Len or Leni). She had enough green, blue and orange clothing that at least once a week, someone would say, “Oh, what a beautiful little boy.” An elderly woman did this to her once in the grocery store. When I corrected the woman, she said to me, “Well you dressed her in blue!” I suppose the fact that she was wearing a blue dress was just one detail too many …

Helene is seven now. Her second birthday cake was a %&$@)%^# princess. Her favorite color is  — wait for it — waaaaaaait for it — pink. Pink frosting, pink shoes, pink balloons, pink dishes. If pink is an option, she will pick the pink. She also loves to have her fingernails and toenails painted. (In fact, it was how we finally got her to let us trim her nails without screaming like we were trying to murder her.) She picks out her own polish.  Guess what color.  EVERY.  TIME. Oh, and it has glitter in it, which is fun. (By which I mean NOT AT ALL FUN.) She likes to wear faerie wings and often fancies herself a queen. (Last week, though, she was a king thankyouverymuch). She wants to be a flower and live in a forest when she grows up.  A PINK flower, dammit.

But, like her brother at her age, she doesn’t look at pink and see “girl.” She looks at pink and glitter and faerie wings as things that appeal to her aesthetic. It’s that simple.  And given the amount of time she spends trying to put those faerie wings on her brother, I feel confident saying this. (Aside: mad props to her brother, who rocks those faerie wings like a champ more often than not and has never ONCE said to her anything about boys not wearing them.) When I look at the toys strewn about our living room, there is really nothing about them that would let a stranger know whether a little boy or little girl lives here.  This pleases me because – particularly in the past couple years – Helene picks her own toys.

Yet, I question myself constantly. Am I swinging the pendulum too far the other way?  Isn’t the idea of equality not about making a girl more masculine (or less feminine) but simply about giving her the freedom to choose her own path, wherever that may lead?  Because, the truth is, I don’t care how feminine or masculine she is as an adult. I care only that she arrives at her destination of her own volition – of her own choosing – of her own heart. I want this for both of my children. Have careers, have families, have both, have neither … just be kind, be happy, be responsible, be caring and – above all – be yourself.  None of that is gender-specific.

Which brings me to yesterday. Yesterday, Helene had ABA therapy, and it was rough. She had a hard time transitioning into session. To help her, I offered to paint her fingernails as a distraction to ease her into the routine. She eagerly agreed, and we applied glittery hot pink enamel to her freshly manicured hands. Later, when the therapist was strategizing ways to help Helene with transition in the future, she remarked that Helene is “so girly.” I felt the hairs rise on the back of my neck and shot back, “No, she’s really NOT.”  What does “so girly” even mean?!  I’m not a scientist, but I’m reasonably certain – after years of diaper-changing – that Helene came with the standard-issue genitalia. Are there quantities of femaleness?

I took stock of the room – a Lego race car, primary-colored sorting boxes, plush Wonder Pets, Backyardigans, Doc McStuffins and Peppa Pig; dinosaur bowling – and I felt an overwhelming sadness at the reminder of how deeply our biases root into us. The elderly lady in the store who saw blue but not the dress. The therapist who sat amidst the sea of toys and saw only pink glitter nail polish. The me of ten years ago who saw only bullying and not just a favorite cartoon. I ached longingly for the comfort of the obliviousness of my first thirteen years. I wondered how long I preserved that oblivion for my oldest and how long I can for Helene. I took solace in the idea that the very literal way Helene sees the world as a result of autism might insulate her against that bias gaining a foothold in her psyche. Although she has a compelling need to categorize the world, she does it based on facts and not judgments, because that’s just her lens.  A very pink lens that has nothing to do with her gender and everything to do with a world that’s more fun with faerie wings and sparkly hands.

What I Want on World #Autism Awareness Day

You can light it up blue.

You can change your social media avatars for a day.

You can eat Twizzlers until you puke.

You can make cute memes with multicolored puzzle pieces, pin a gazillion blue (or purple or whatever the hell color we’re using now) ribbons to yourself, your door, your trees, your car antennae.

My questions, as a member of a family affected by autism, are these:  How does that improve my daughter’s life?  How does it improve our lives as the people who care for her?  How does it improve the efficacy or competence of those who treat her, educate her, or – possibly – employ her?  How does your blue light bulb do ANYTHING to raise the social consciousness – for more than 24 hours – of a group broader than autistics and those already entrenched in autism communities?  Because, tomorrow – April 3 – autistics and their families will still be here.  And we will still be a community growing.  And we will still be a community aging and presenting with evolving needs – needs that outlive the currently available supports.

So, this April 2, I am asking you (the “you” here being my readers who are NOT autistic themselves or caring for someone who is autistic) to make this World Autism ACTION Day.  Make today – and as many other days as you can manage – the day you DO something.  You can donate money or time.  You can educate yourself.  Both of these are a great help but  are not necessarily things you can do every day.  However, there are things you can do today and every day after today. These things will matter equally – if not more – than miles walked, dollars donated or articles shared.

copen quote

BE A FRIEND.  Being autistic and caring for an autistic person can be very isolating.  It is a myth that autistics do not want friends or social interaction.  But, it is true that friendships and social interactions can be extremely difficult for autistics to navigate for reasons as varied as fingerprints:  continuity of schedule, sensitivity to sound, light, texture; difficulty interpreting body language or facial expressions, struggles with receptive or expressive language.  Being a friend means being patient; it means a willingness to actively focus on ways you can communicate instead of dwelling on ways you cannot; and, it means meeting the autistic person where she is.  For example, you would not ask a wheelchair-user to meet you at your second-story apartment if the lift were broken.  Nor would you ask a blind person to leave her cane at home because it “embarrasses” you.  The same logic applies to accommodating an autistic person.  Asking or expecting an autistic person to visit your home, a restaurant, a museum, a park or any other place that she can’t access at all or without proper supports (whether due to sensory issues, anxiety or communication barriers) is the same as asking a wheelchair user to navigate stairs or asking a blind man to go out without his cane.  It’s unkind, it demonstrates a lack of awareness or acceptance, and it’s completely counterproductive to establishing a real, caring relationship.

Similarly, take a moment to reflect on what the families of autistic persons experience.  We have in many cases altered our lives in significant ways to create an environment in which our autistic loved one can thrive.  We have carefully curated – through years of trial and error – routines, schedules, familiar places, safe people, preferred foods, go-to comfort objects, reliable communication methods and – when all else fails – evacuation plans.  The kindest friend to an autism family is the friend who does not ask the family to fit into her social schedule / life but how she can fit into theirs.  And if that means that the friendship becomes about sharing an occasional cup of lukewarm coffee over your friend’s dining room table without so much as a blink in the direction of the chaotic pile of IEP notes, the floor littered with toys lined up like soldiers and ducks, or the unwashed dishes in the sink, let that be enough for you.  I promise you – with all of my heart and to the bottom of my soul – it is enough for your friend.  In fact, that small act of kindness may be a lifeline.

Convex lens flipped image

SEE THROUGH DIFFERENT LENSES.  Yesterday, when I got home from work – as in, the very minute I walked in the door – Helene was in the throes of an escalation.  She was anxious and agitated, because her ABA therapist wanted Helene to agree to go on an outing.  So, I dropped my bag, and I sat down with Helene on the floor, and we talked.  I tried to tease out of her why she didn’t want to go.  We negotiated choices of location.  We talked about what scared her.  (And, bear in mind, Helene has very limited expressive language, so this requires artistic inquisition as well as insightful listening.  In other words, a whole lot of attention that I typically don’t have after a long commute.)  Finally, she selected a location, voluntarily put on her shoes, and headed toward the door.  She then announced, without explanation or an ounce of diplomacy, that Papa was not to come with us but to stay home with Ralph (our cat).  Her reasoning?  “Because Papa stays here with kitties.”  Circular and unassailable – kind of like a moat.  The husband and I have to do the telepathic communication thing to decide whether to fight this battle, now that she’s agreed  – after 20 full minutes of assurances, affirmations, negotiations – to leave the house.  (And, FYI, telepathy is NOT the most reliable mode of communication for decision making. *ahem*)  Thankfully, we silently agreed Papa would stay home.

On the way there, I spent the ride laying out the boundaries of our outing – where we will park, how we will walk through the parking lot, how long we will stay, what can be purchased, where we will go after we are done.  Predictability gives Helene the confidence she needs to get out of the car and walk into the store.

To recap, I’ve worked all day, just driven 70 miles in heavy traffic, didn’t even get a chance to pee before unexpectedly heading back out, I’m chauffeuring a child who whose presence is the product of a deal negotiation even Israel and Pakistan would admire, and I’m balancing my hope that this goes well and builds Helene’s confidence against my stress and worry about the fallout if it doesn’t go well, because she feeds off my moods like a vulture on roadkill.  (So, yeah, about that empathy thing … *headdesk*)

And then – RIGHT AS WE WALK IN THE DOOR – we hear the store’s cashier loudly declare to a customer that she “just can’t go there” with “screaming kids like that.”  Helene’s ABA therapist (who has joined us) and I exchange the same knowing-but-worried glance.  I’m now walking a tightrope with a bed of hot coals as a safety net.  It’s not that I give two shits what the snot-nosed, 2o-ish cashier thinks about me or my parenting; it’s that there is a real possibility that Helene appears at some point during this outing to be a “screaming kid like that.”  I care a great deal about people judging my daughter, particularly when the judgmental person thinks she understands what she’s seeing and hearing but absolutely does not.  Make no mistake, Helene screaming will NOT be due to a temper tantrum brought on by overindulgence but a genuine expression of pain from sensory stimulus or of frustration because of her language limits.

On this day, though, Helene is a ROCK STAR.  She picked her items (and even negotiated herself a slightly better deal).  She said please and thank you without prompting.  She waited patiently in line when we checked out.  She was alert in the parking lot as we walked from the store to the car.  It was HUGE and AWESOME.  It is a moment I relish because it offers a hopeful glimpse into a less worrisome and more independent future for her.

Other trips have not had such happy endings.  There have been meltdowns or escalations over things beyond our control:  loud music playing the store, a crying baby, someone vacuuming, waiting too long for a table.  When it happens, we are at the end of our ropes.  What you don’t see is the length of the rope left behind – measured by how hard we worked – all of us – to make that outing a success.  You don’t see the 20-minute (or more) lead up to even get out of the house.  You don’t see the sleep deprivation or the challenges from that day’s work at school and therapy. You don’t see anxiety and sensory processing disorder (but they are no less real).  What you see is your judgment – a spoiled child about whose behavior the parents are apathetic, overly indulgent or selfishly uncaring.

Now see the world from Helene’s point of view. Or mine. Or Papa’s. Or Nate’s. Imagine a life where there is simply no such thing as “running to the store for milk.”  Imagine a life where a “vacation” is grocery shopping or running errands by yourself.  (I mean, seriously, the opportunity to go to Target alone is so significant in my life, I actually write about that in my FB status updates and tweets.)  Imagine a life in which you stare longingly at the swings, slides and monkey bars at the park, but your crippling fear of birds and wind keep you indoors.  Imagine a life where your whole family can never make your music performance, because someone has to stay home with your autistic sibling who can’t attend (for any number of totally valid reasons).

Make an effort to see these things the next time you eyeball that kid wailing and thrashing on the floor at Walmart.  If you can’t bring yourself to project kindness, give that poor mom or dad the gift of walking away without the condescending stare, and save your comments until you are well out of our earshot.  It’s not that anyone wants your pity.  And it’s not that anyone wants your attention.  What I want is your patience. What I want is your understanding. What I want is your compassion.  And if you cannot bring yourself to share any of that, what I want is you to turn your head the other way and zip your lip.  (And, listen, whether a parent is an incompetent asshole or is struggling with demons you cannot fathom, I have YET to see rolling eyes and tsk-tsking suddenly render the offending parent or child calm/acceptable/presentable or whatever the hell else it is you want, Judgy McJudgerson.)

you

REMEMBER, IT’S NOT ABOUT YOU.  I have people in my life – and based upon conversations with other autistic caregivers, I’m not alone in this – who really do not understand autism (notwithstanding their feelings to the contrary).  They bristle at the idea that Helene can’t (not won’t – can’t) go to certain places, be around certain environments or tolerate certain noises or feelings.  These people insist that Helene give kisses and hugs, that she make eye contact during a conversation, that she come to them for visits, that she sit still at the table for a meal, that she eat whatever is being served to her, that she speak to them when she is spoken to, that all kids love to get dirty so she must too, or that all kids love macaroni/hot dogs/candy so she will too.  These people take it as a personal insult when Helene doesn’t meet their expectations – particularly if she seems to do such things for other people.  If you want to do something for World Autism Awareness Day, educate yourself about why these behaviors are not about you.  This is a huge part of meeting an autistic person where she is.

I am grateful in this regard to my in-laws.  We see my in-laws most Sundays.  Our visits have evolved from meeting at local restaurants for breakfast, to meeting for afternoon coffee out, to meeting for coffee at their house or ours to meeting pretty much just at our house.  Helene’s grandparents understand the challenges she has navigating restaurants – from the discomfiting smell of too many foods at once, to the pain and confusion of hearing too many voices at once, to the physical challenge of sitting still in an uncomfortable chair or booth during our idle chit-chat.  As long as we spend family time together, the venue is not at all important outside the parameter that it is one in which Helene can relax and access us.

Helene’s grandfather also calls her on the telephone almost every night.  The conversations are short and pretty predictable.  Mostly they talk about what Helene ate for dinner (pizza or PBJ), and her grandfather tells her he loves her.  But, there are many nights – maybe more than less – where Helene refuses to get on the phone.  Her refusal is often a VERY LOUD, I don’t wanna talk to Gordo!  My father-in-law takes this in stride.  He will still shout, “I love you, prieta!” into the phone so that Helene can hear it, and he still calls her again the next night.  And the next.  And the next.  Because he understands.  There are other nights where Helene initially refuses the call only to come ten minutes later to us crying that she DID want to talk to Gordo.  And he talks to her when she calls him back, never asking her why she didn’t want to talk in the first place.  Why?  Because it doesn’t matter to him.  It matters only that his granddaughter knows how much he loves her, so he meets her wherever she is.

Today, what I want is for you to promise yourself that you will be a friend – whether to an autistic person or to someone who cares for an autistic person, by meeting your friend where s/he is.  You will try to see behavior from a new perspective, granting compassion without (or at least before) rendering judgment.

Awareness, acceptance, understanding … I don’t care about the label.  I care only about the genuineness of the affection motivating the action.

 

Just Try

I can tell you about fifteen hours a week of therapy.

I can tell you about speech delays, sensory processing disorder, language processing disorder and social anxiety.

I can tell you about impaired motor skills and cognitive abilities impossible to assess.

But, that doesn’t really tell you anything about what it’s like to know Helene.  It tells you nothing of her personality, her sense of humor, her emotional intelligence or her potential.  It tells you nothing about what her autism is like.  It simply reduces her to sound bites and statistics.  Without a doubt, her life follows and will continue to follow a road less traveled and perhaps bearing greater obstacles.  But, she is not “lost” or “damaged” or “diseased” because of autism.  Before any other adjective, Helene is human.  She is love.  She is a daughter.  She is a sister.  She is a niece, cousin, granddaughter and friend. I don’t spend my days trying to “cure” her; I spend my days learning to understand her, trying to see the world through her eyes, and helping her navigate a choppy and uncertain sea.

Our autism is a seven-year-old girl wearing Hello Kitty pajamas who wants to be a flower and live in a forest when she grows up.   This is a little piece of her story.

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The alarm chimes, and I search the nightstand for my phone with the palm of my hand, patting … patting … pat – …

The chiming stops when I tap the screen with as much vigor as I can muster at 6:30 am.  I greedily sink back into my nine-minute snooze, but a small, heat-seeking appendage jabs itself, toes first, into my calf.  Momentarily, I am disoriented.  Am I in an oven?  Is the house on fire?  Have I woken on the surface of the sun?  I launch the blankets off of me and suck up the cool air until I’m certain steam rises from my abdomen.  As my eyes adjust, I realize — nope — still in bed and house flame-free.  The sauna-like humidity comes from the four-foot long human furnace velcro-ed to my side.

Helene grumpily pulls the blankets back toward her and covers her eyes, blocking out the morning sunshine that glistens through the bedroom window.  The birds outside chirp away with an enthusiasm that makes me consider whether worms for breakfast is a sensible choice.  It is early, and I am tired; but, the instant gratitude engulfing me as I remember that it is summer and that Helene can continue to sleep propels me from bed and down to the coffee pot.  The protein bar I eat while waiting for said coffee causes me to ponder the worms again.

I typically wake next to a human who is considerably larger and scruffier (although probably not less … warm), but Papa was relegated to Helene’s bed last night, because her sleep didn’t deepen enough to move her from our bed to hers.  Helene never learned to fall asleep on her own, and that’s our doing.  Self-preservation caused us to let her fall asleep in our bed – sometimes after we fell asleep – and now that’s the routine. Mostly, it’s worked out. Except, you know, when it hasn’t.  Anyway, it’s not really bedtime that’s the problem.  It’s morning, which comes reallyfast when you don’t fall asleep before midnight.

Helene’s internal clock is not wired to accommodate Mama or Papa’s work schedule or a school schedule for that matter.  From birth she was a late riser and a night owl.  I was convinced she would be the opposite, because she was born at 5:30 a.m.  Apparently, though, she came out at that hour because she was ending her day not starting it.

All joking aside, if an alarm or an insistent parent wakes Helene before she’s ready to wake, the resulting sensory explosion is immediate, severe and spectacular.  We’re not talking the typical-kid whining about not wanting to get up or begging for “just a few more minutes.”  The blast radius for this unwelcome intrusion covers at least two blocks and three octaves of crying and frustration, hyperventilation, vomiting and a sincere worry that the neighbors will call Child Protective Services.  Even if Helene achieves a relative calm without falling back to sleep, what follows is an inability to function for the rest of the day and the trigger of a late-day napping cycle.  We win the battle to get Helene to school on Monday by 7:50 a.m. only to lose the war for the remainder of the week as Papa and I sleep in shifts and cook frozen pizza at 3:00 a.m. for the kid who thinks it’s dinnertime.

If, however, left to her organic sleep patterns, the result is drastically different.  I’m greeted with a, “Good morning, Mama,” and the remnants of whatever dialogue danced through the recesses of her grey matter before she crested her last REM cycle.  Some days, I even get a hug or a gentle pat on the cheek.

Today, Helene wakes a little after 9:00 a.m.  She’s chatting away to herself.  Lately, she’s taken to singing the melody of a song she knows but changing the words to repeat a familiar situation.  Today’s song is a mash-up between something from The Backyardigans and a trip we took to the zoo a couple of weeks ago.  It’s as close as Helene will get to spontaneous (non-memorized) speech, and I’m enjoying it immensely.  I don’t really want to interrupt it, but neither do I feel like washing the sheets.

“Did you do Step 9?” I ask.  “Step 9” is “Go to the bathroom.”  About a year ago, we developed a bedtime routine that covers ten steps that carry us right on through to morning.

“You sure do,” Helene responds as she slides out of bed and wanders sleep-drunk toward the bathroom.  Helene was almost six before she finally worked out the body signals needed to successfully toilet.  She’s been a rock star at it since, but she will hold it until the bitter end.  There are a lot of possible culprits here.  One is that she just does not recognize the urge to go until it is URGENT.  Another might be a need for control; there is a lot about Helene’s daily being that is out of her control (such is the nature of being 7), but whether anything goes into or comes out of her body are two things that pretty much only she can dictate.  Another might be the intensity of her focus.  When she pays attention to something, she often does it to the exclusion of all else, including a bladder screaming, Evacuate! Evacuate! Evacuate!

When Helene reappears in the bedroom, she announces, “Step 10, please.”  “Step 10” = “Time for breakfast.”  She then collects her blankets and a beach bag filled with her “friends” – a collection of Ty Beanies:  Muno, Foofa, Toodee, Brobee and Plex from Yo Gabba Gabba and Pablo, Uniqua, Tasha, Austin and Tyrone from The Backyardigans.  She drags this mosaic of plush madness down the stairs to the living room, plops herself on the carpet and braces herself for the day.  Even during summer break, Helene has therapy six out of seven days a week – speech, OT or ABA.  Typically, today would be ABA therapy for four hours.  But, Helene’s therapist is not coming today, and we have other plans. We’ve been invited to a birthday party.

This doesn’t happen often, so we are excited – and a little nervous – about how this will go.  Birthday parties are one of those things that parents of typically developing children take for granted as part of growing up.  But for autistic children, parties can be fraught with challenges.  If autism presents – as it does in Helene’s case – with sensory sensitivities to noise and light, a crowded room full of the cacophony of 10, 15, or 20 kids is not ideal.  Add to that the madness of places like Chuck E. Cheese or SuperFranks, and there’s a good chance we won’t even make it in the door.  But, this assumes Helene is invited to parties at all.  Helene spends most of her day in a special education classroom with kids who are also on the spectrum; like Helene, many of her peers don’t have birthday parties except for the quiet kind at home with friends and family who have realistic (and flexible) expectations.  Helene spends much less time in the general education environment, and given her limited verbal communication and her confusion by or fear of social situations not facilitated by an adult, she is especially challenged by making friends.  The older Helene gets, the more her “differences” from her peers become apparent, and the greater the obstacles.  We are so grateful that Helene’s school peers have never been unkind to her.  But, the reality is that Helene doesn’t quite know what to make of other kids and – at seven years old – they don’t quite know what to make of her either.  The confusion prevents relationships needed to foster things like birthday party invitations and play dates from developing, and we worry a lot about what that will mean for her later in life.

Today, though, there is an invitation, so on to Step 10.  Breakfast is the same every morning:  Gerber oatmeal blended with fruit puree.  Yes, that’s right.  My seven-year-old still eats baby food for breakfast.  I think there is an excellent chance she will eat this same breakfast at 27 and 77.  I ask you:  so what?  In fact, this was my first “so what” moment as the parent of an autistic child.  It’s a perfectly nutritious breakfast.  It’s the easiest thing ever to make.  It gives her daily practice using utensils.  She actually eats all of it.  And, frankly, the only reason  not to let her have this breakfast is because I’m worried about what other people might think about me as a parent for letting her have it.  Well, why should I?  Unless you’re coming over to make her breakfast every morning and navigate the consequences of that, I DON’T CARE, Judgy McJudgerson.  Except that I care enough to tell you we did try lots of other things – traditional oatmeal, eggs, cereal, pancakes, fruit, cold cuts, etc.  Ultimately, Helene adopted only two other breakfast foods:  hash browns and bacon.  (If her food aversions caused me doubt about her genetic relationship to me or to her father, the love of bacon and carbs quashed it right then.)

After breakfast, Helene busies herself on her iPad or the computer.  About two years ago, Helene stopped watching anything on television except baseball.  The upside of the baseball preoccupation is that Papa and I are perfectly willing not only to indulge but encourage this, because we are huge baseball fans ourselves.  The downside is that baseball broadcasts come with commercials that were conspicuously missing from some of Helene’s earlier channel choices.  Helene by and large communicates via “scripting” – a form of echolalia or repeated speech.  This means memorizing phrases (or entire monologues) then repeating them – often in the correct context.  Scripting helps Helene to communicate a need or want.  For example, I asked Helene one afternoon whether she was hungry.  She replied, “I’m famished.  ‘Famished’ means you are really, REALLY hungry!”  Thank you kindly, Endless Reader.  Frequently, though, scripting means we drive around town with an ad agency in the backseat.  As we pass the gas station:  “Chevron with Techron.  Care for your car.”  As we pass a pizza joint:  “Mountain Mike’s Pizza.  You’re worth it.”  As we pass a car dealer:  “Toyota.  Let’s go places!”  McDonald’s will be sad to know that “I’m lovin’ it!” never really caught on with Helene; she sticks with frenchfrieschickensapplesmilk as her slogan of choice for the Golden Arches.  I can say confidently that you just have not lived until you’ve strolled through the grocery store with a kid shouting, “He hits it deep!  He hits it long!  It’s … it’s … OUTTA HERE!”

After breakfast (which is practically lunch by the time we get it together), we head out for the birthday party.  Things go awry about two miles from the house.

Helene has an uncanny sense of direction.  She will tell you to turn left or right based on where we’ve told her we’re going, and she is almost always accurate.  Except today – today we’re going to a different place than she thought.  Of course, I didn’t and couldn’t know this, because she cannot tell me where she thought we were going.  This type of miscommunication happens to us often, because Helene does not deal in generalities.  I usually know better than to ask things like, “Do you want to go to the grocery store?”  because Helene will agree and think we’re going to Safeway.  I, however, mean we’re going to Sprouts.  When the car does not go to Safeway, we have big, big problems.

Today, I know my mistake nearly instantly.  I told her “birthday party,” but I should have told her the name of the place we were going.  I don’t know what place she associates with “birthday party,” but it was NOT in the direction the car pointed.  As we pass the turn she expects us to make, she starts to panic and yell.  To a casual listener, I know she sounds like a child having a temper tantrum.  I thought it myself until I knew better.  Years wiser, I can hear the panic in her voice, and I know that as she sits strapped in a car seat in a moving car, having no idea where she’s going, she feels trapped and – what I fear most – is that she feels betrayed.  All I can do is offer her assurances:  we’re going to a party; you like parties … the party is at the park; you can play … no school and no therapy, only fun.  Finally, I tell her that we are going just to try it.  If we get to the party and she doesn’t like it, we can leave.  And, I mean it.  I’ve learned that I have to offer her meaningful choices or she won’t trust me.  I encourage her over and over to find her calm and promise her it will be okay.

We arrive at the park, Helene’s panic reduced to a whimper but nonetheless hanging over her like a dark cloud.  Of course, the park is full of birds because – outside, yo.  Birds are Helene’s kryptonite.  They freak her the hell out.  We don’t entirely understand why, but the fear is real and powerful. Our best guess is that birds move suddenly and unpredictably, which Helene finds unnerving.  Her fear is strongest with black birds, like crows, but even little finches and hummingbirds can trigger her flight response.  Also, it’s a windy day, and Helene doesn’t like the way it feels on her face or sounds in her ears.  Still, we walk slowly into the park and find a seat on a bench.  I have a firm but gentle grip on her arm; she will bolt away from me if frightened enough and in her fear she will not think about dangers like cars, ledges, curbs or other injury hazards.

“You want house,” she implores me as I sit her on my lap.  Despite all the years of speech therapy, we cannot seem to shake the pronoun confusion that invades Helene’s speech.  I know what she means, though.  And I know she means it, because she’s giving me full, unblinking eye contact as she says it.

“I know,” I tell her, meeting her eyes and brushing her hair from her face.  The birthday boy’s mom hands Helene a cup of juice, which she takes.  I am grateful that, in this particular moment, the parent watching this unfold also has a child on the spectrum. I don’t have to explain any of what she’s seeing and if, in the next 30 seconds, we say our goodbyes and head back to the car, there will be complete understanding and no need for apologies.  This solidarity brings me a calm that helps me help Helene.  I’ve read the findings of some science-y types that autistics lack empathy.  Perhaps some.  My daughter is not one.  If anything, I find her feelings frequently extend from mine:  If I worry, she worries.  If I am sad, she is sad.  (Don’t get me wrong.  There are definitely crossed signals. Like the time she full-on kicked me in the shin then laughed when I dropped to the floor from the pain of the million-watt jolt of electricity she sent up my leg.)  Right now, as she’s sitting on my lap, I’m certain my calm is feeding hers.  Just try.

Helene sips the juice and watches two boys playing near us.  One of them squirts the other with silly string, and Helene giggles a little.  Given the opening, I offer:  “How about we sit here on the bench for a minute?  You can stay on my lap and finish your juice, then we can go.”  Helene doesn’t say anything to me, but she sips the juice again and makes no effort to get off my lap.  Just try. Then, suddenly, she’s off.  There is a basketball court below us, and she couldn’t resist its gravitational pull.  Eventually, she explored the cement slide (and took the road-rash burn it gave her on her arm in stride) and the swings.  She did her best to ignore the birds.  She made it about thirty minutes before announcing, “Time to go!”  Just try.

Living with autism is sometimes a challenge.  But, it is a life, and it is without a doubt a life worth living.  We live in slower motion.  We pay closer attention to detail.  We take less for granted and more in stride.  It is every day committing just to try.

Sometimes, the stars align and magic happens

The life of an autistic child is oftentimes about routines and schedules.  In Helene’s case, there is very little of her life that isn’t planned in advance – not because it suits us, but because it suits her.  She has a much easier time transitioning through the different happenings in her day when she knows what to expect.  “Spontaneous” is not part of our vernacular except as antecedent to “combustion.”

So, today, as I was getting ready to leave the house with Nate to get him a haircut, I found Helene sitting on the living room floor, putting on her shoes.

[Let me pause here to explain that shoes are highly symbolic for Helene.  When she does not want to go somewhere, she will fight the hardest right before her shoes go on.  Once the shoes are on, though, the bark dilutes to a dull whine, as though she is resigned to the fate of going wherever the shoes might take her.  When Helene gets home, the very first thing – the VERY. FIRST. THING. – she does is take off her shoes.  This is often accompanied by her throwing some serious shade in her parents’ direction, subliminally conveying the message that she WILL NOT be leaving the house again, thankyouverymuch].

Me:  “What are you doing?”

Aaaaaaaaaaaaand here’s the answer I did not anticipate.  I COULD NOT anticipate …

Helene:  “I go get haircut.”

Me:  “You want to come watch Nate get a haircut?”

Helene:  “I want haircut.”

Um.  Okay?  Okay.

*Fast forward 20 minutes*

Helene, the Hubs, Nate and I are sitting in the waiting area of the barber shop.  About 3-foot-six-inches of absolute cutie-patootie walks up to us and says, “Hi, Helene!”  Before I can really put together what’s going on, Helene says, “Hi, A!”  The two of them promptly sit down next to each other, and A starts jabbering up a storm.  Thankfully, Hubs and A’s mom get me up-to-speed:  A is one of Helene’s classmates at school (but he has early dismissal, so I’ve never seen him before.)

Now, this exchange would be remarkable enough. But, WAIT!  THERE’s MORE!

Helene had her iPad with her, as we anticipated the need for a distraction during the haircut.  (You know, the haircut we are not entirely yet convinced is actually going to happen.)

[Let me pause here to explain that Helene is a pretty decent sharer … except when it comes to her iPad.  You want to learn mad ninja skills?  Touch her iPad.  Go ahead.  I. DARE. YOU.]

A was definitely eyeballing the iPad, and I could feel myself tensing, bracing for the inevitable smack down coming A’s way, grateful that A’s mom would not judge the ensuing global-thermo-nuclear-wrath.  Then, A blew the lid off Pandora’s box:  “Helene, can I have a turn?”

[Pausing again. Also, foreshadowing. Also, also? Spoiler alert. Do you know what was left in Pandora’s box after? The very last thing left? Hope. Think on that for a minute.]

Before the synapses of my brain could carry the signal from whatever source of origin makes your vocal chords vibrate; before my mind could tell my muscles to move my mouth; before I could even blink … Helene handed A the iPad.  As if that wasn’t enough, she patiently sat next to A and watched him take a turn on the game she played.  And, as if THAT wasn’t enough, when A finished with it, he handed it back to Helene, said thank you, and Helene responded, “You’re welcome!”  Wash, rinse, repeat – for a good ten minutes.

AND, and, and, and, and, and … A decided he wanted to play a different game.  Helene was cool.  Totally cool.  Cucumber cool.

Oh, and did I mention there was a vacuum cleaner and a hair dryer going off and on THE WHOLE TIME?

This right here?  This would’ve been enough to convince me that Peter Pan can fly, reindeer are sometimes born with blinking noses, wishing wells really work, and it was totally worth burying a potato in the backyard.

But, WAIT.  THAT’S NOT ALL!

The stylist called A’s name for his turn in the barber chair.  He wasn’t too excited about it.  In fact, he was pretty articulate about how much he did not care for the big idea of getting a haircut.  Well, I thought, that should do it for Helene.

Then this happened:

Helene's first (real) haircut.  As opposed to my stealth efforts at trimming her ponytail while she was asleep or distracted ...

Helene’s first (real) haircut. As opposed to my stealth efforts at trimming her ponytail while she was asleep or distracted …

Helene got into the chair.  Helene let the stylist put the cape on her.  Helene let me undo her braid, and she let the stylist comb her dry hair.  She didn’t even complain when the stylist sprayed her hair with water.

It was amazing, surprising, thrilling.  But, here’s where spontaneous decisions typically end up with a very different ending …

The barber shop was very busy.  It’s the kind of shop that specializes in men’s and boy’s cuts.  The stylists are young, cute, and hustling to get through their respective workloads.  Yet, here comes my sensory-challenged daughter with hair down to her waist …

We hit the mother of all lotteries.

The stylist who drew Helene’s name was the sweetest, kindest, most patient, least judgmental, perfectly understanding woman EVER.  As Helene approached her chair, I quickly explained that Helene is autistic and has a lot of sensory sensitivities, this was her first real haircut, and if Helene couldn’t make it through, I didn’t want the stylist to push it or feel bad – this was more about the experience and less about the haircut, and while Helene seemed quite game, that could change suddenly through no one’s fault.  This exchange was a 15-second conversation.  Yet, somehow, this angel of a woman heard every word.  She combed gently.  She never asked Helene to hold or turn her head a certain way.  She let Helene stand when sitting wasn’t working for Helene anymore.  She verbally reassured Helene.  She worked herself into a pretzel on the floor to cut Helene’s hair into an amazingly straight line.  She swept with the broom instead of getting out the vacuum, because she didn’t want to scare Helene. (Also, aside to bossy manager stylist who wanted our stylist to use the vacuum: your karma looks a lot like paper cuts and lemon juice to me. Just sayin’.)   Our stylist was super patient, kind (without being patronizing or condescending) and – she finished Helene’s haircut!

Afterward, we went out for celebratory frozen yogurt.  As we sat at the table, Helene looked at us and said, “Oh, Helene Bear, you got your hair cut.  I am so proud of you!”

“Yes, little lady,” I said, “you should be proud of you.  You were very brave.”

All this for one easy payment of a dish of vanilla fro-yo topped with marshmallows, gummy bears, gum drops, mini M&Ms, chocolate rock candy and Nilla wafers.

Ain’t Nobody Fresher than My “Clique”

Outside of the Weigh In Wednesday posts, which are pretty innocuous, I haven’t blogged much lately.  I thought maybe I had a bit of writer’s block.  I think, though, the truth is that I developed something of a writer’s phobia.

Over the past year – and particularly the last couple of months – I’ve watched the train wreck that is blogging in the special needs communities.  The communities tear themselves apart from the inside out: parents vs. self-advocates vs. anti-vaxxers vs. non-parents who have opinions vs. ableists vs. people who don’t “check their privilege” vs. you name it.  It saddens me deeply.

It also scares me, because I truly believe that this in-fighting – and it is in-fighting – is the biggest obstacle to acceptance, inclusion, (honest) awareness and support for those whose development follows a path less traveled.  Instead of amplifying each other’s voices to a volume that can no longer be ignored by people with some real decision-making power, we drown each other out and reduce our arguments to a trash heap of fallacies, non-sequiturs, false analogies and ad hominem attacks.  In the end, the very constituencies we wish to persuade dismiss us as nothing more than a group of trolls.  In too many cases, rightfully so.

I mostly stay out of the fray other than a few occasions on which someone(s) launched a very targeted and unnecessarily personal attack against bloggers I know (in some cases, in “real” life, although let me be clear that my online friends are very, very real to me).  Even then, there were times I didn’t come to someone’s defense when I should have, because continuously pleading for respectful discourse and reasoned debate on the Internet is kind of like banging your head against a wall because it feels so good when you stop.  Rational argument isn’t fun, I guess.  It requires actual work – research, analytical thought, critical reasoning.  It’s easier to lob around opinions masquerading as facts and to hurl insults and accusations.  Why bother with evidence when you can scapegoat someone?

Ultimately, the vacuum of conflict made me afraid to blog.  I started this blog as a gift to myself – a mental outlet for all the stuff on my mind.  I didn’t intend for it to become anything specific, let alone autism-specific.  I just wanted a space to word vomit and maybe get a little dialogue going.  If I helped someone in the process, even better.  Ultimately, though, I both wanted and needed this to be a safe space.  By safe, I don’t mean necessarily conflict-free.  But, by safe, I definitely mean free of unrelenting personal attacks either in the comments here or elsewhere on the interwebs. So, I laid low. Way low.

However, I made two super-rookie mistakes yesterday.  First, I read the comments on a Huffington Post article about the Disney guest assistance program.  I learned that my husband, my son and I are apparently “entitled” because our daughter/sister is autistic.  I guess that’s true if by “entitled” you mean that her father and I have the privilege of carpooling her to six different therapy appointments each week (her attendance at which effectively keeps both of us underemployed), living in a school district that completely lacks the resources to educate her, constantly struggling to find social activities in which she can actually and meaningfully participate, and facing the very real possibility that she will require care for the rest of her life with the knowledge that her life expectancy is far greater than her father’s and mine.  I am pretty sure the only thing that “entitles” us to is some mother-effing compassion.  But, you know.

On the heels of this mistake, I read a blog post by an autistic adult blogger whose writing I hadn’t previously read.  The post (to which I am deliberately not linking) is a critique of Facebook, Twitter or other social media “cliques” (this was the blogger’s word), which the blogger described as groups of people who routinely comment on, share or otherwise promote each other’s writing.  The conclusion drawn by this blogger is that these “cliques” either formed with the intent to or evolved in purpose to exclude others.  I think – and I could very well be wrong – that the implicit presumption the author makes is that these “cliques” not only do not include autistic persons but actively seek to exclude them (or their points of view).

As it happens, I have a circle of blogging friends who meet this author’s definition of a clique (with the notable exception that the circle does, in fact, include autistic persons and, hence, their points of view – which may or may not be those of the author above), and I have a couple of good reasons (which are not germane to this conversation) to believe this blogger referred to that circle.  I’m not obligated to justify the group’s existence, and I won’t.  But, the stupidity – yes, STUPIDITY – of even rhetorically raising and “debating” this as an issue made me very, very mad.  So, I am going to talk about the group for the benefit of parents and caregivers who find themselves in need of support.

The ways in which this particular circle of people found one another are as varied as you can imagine.  The ways in which our relationships developed and grew or diminished over time are equally varied.  The composition of the group doesn’t change dramatically, but people come and people go. The relationships formed organically and out of commonalities that go well beyond shared parenting experiences.  As human beings (regardless of neurological status) we found a way to embrace mental, physical, financial, gender, racial, ethnic, stylistic, political, religious – and, yes – neurological differences that shatter the limits your typical “high school” clique might find socially tolerable.  There was no pledge class, no hazing, no secret handshake, no application.  Sometimes, people just find each other and chemistry does the rest.  There is nothing wrong with that.

Perhaps more importantly, however, this social circle is not simply about blogging.  We’re not in it to up our shares, likes, views, traffic or drown out any category of voices with a blog.  I know this might be hard to believe, but our lives are a little too full of responsibilities to spend our precious time conspiring to crowd anyone out of the LIMITLESS Internet.  Rather, this social circle is about support – emotional, physical, practical, intellectual, economic, potentially life-saving support.  We don’t just share one another’s writing; we share our lives.  We are friends. We love and trust each other.  So it leaves me to wonder: Why – in the name of bacon -blueberry pancakes and all else holy – and especially in the wake of the recent tragic deaths of autistic children at the hands of parents who came to the dark, dark place that made such an unthinkable action seem like the only course – is this a thing? Why would anyone (and especially an autistic adult) look on a group of special needs parents supporting one another’s efforts to not only raise children but to raise awareness, encourage acceptance, enhance diversity, and increase opportunities as something that at best is high-schoolish and at worst is sinister?  Why would this be anything but positive?

The one-two punch of these mistakes had an upside for me. I am done wearing kid gloves.  I will not walk on eggshells or fear my own shadow to avoid “offending” someone who will use any excuse – even a parent support group – to pick a fight. I will not be bullied into silence. You will not make me afraid to say what I came here to say, because my experience – the truth of my experience – may let another person know he or she is not alone.  It may be the difference between reaching for help or reaching for an end.  You can hurl all the accusations you want at me – I’m ableist, I’m a bad parent, I’m abusive, I’m privileged – I DO NOT CARE.  Right now, all I want is to reach through the fog of your words (which I know are really your hurt – and when you’re ready to talk about that, let’s do it) and find that mom, that dad, that grandparent, that caregiver, that therapist, that teacher, that aide who has run out of gas, reached the end of his rope, hit her wall.  To you I want to say:  I know you need support.  I know that parenting/caring for/teaching a special needs child is hard.  I know that people you trust will let you down.  I know you will be criticized from all directions.

But …

If you are here for me, I am here for you.

If you will listen to me, I will listen to you.

If you will not judge me, I will not judge you.

If you will help me, I will help you.

Welcome to my clique.

Lake Tahoe, which Is Really Half Moon Bay: An Adventure

Right now, there is a commercial on frequently in our area. The commercial promotes Lake Tahoe tourism by showing gorgeous images of Lake Tahoe with animated “monsters” superimposed. If your kid has ever played the Endless Alphabet game, you know what the animations look like. Helene is utterly dazzled by the commercial and has been asking to go to Lake Tahoe for a while now. (Sorry – can’t find a video of it to share!)

Today, I had the opportunity (because of my awesome sister!) to take Helene to Half Moon Bay for the night. If you’ve never been, Half Moon Bay is located down Highway 1 on the northern coast of California. It’s a gorgeous expanse of cliff-bordered coastline and rocky surf. I asked Helene if she wanted to go on a journey with me to the beach. “Yes!,” she exclaimed. “Let’s go to Lake Tahoe.” Foolishly, I tried to correct her. “No,” I said, “we’re going to Half Moon Bay.”

“LAKE TAHOE!”

“Ok. We’re going to Lake Tahoe. Let’s get in the car.”

And so began our 2-hour voyage from home to this spectacular place. The transition from the car to the hotel did not bode well for the trip. Anxiety and echolalia were in full gear. There was – of all things – a dog in the lobby, and that just about put her over the edge. But, once we got into the hotel room and she caught a look at the panoramic view of the ocean from the balcony, something magical happened. She relaxed – not completely but enough for me to get her changed into a swimsuit and interested in walking down to the beach.

The walk to the beach was a challenge. Next time you’re near the water, really pay attention to how many birds are around. For poor Helene, walking the half mile from the room down to the stairway to the beach was like walking through a minefield. The seagulls were fine – the “mine, mine, mine”s are a known quantity from endless Finding Nemo viewing. But an over-abundance of Bug’s Life has ruined her for other birds – especially black birds. There are a lot of damn black birds near the water.

Once we got down to the beach, though, none of that mattered. She rushed to meet the water, ignoring the strange feeling of sand between her toes, and shouted gleefully when the frigid liquid ran up to grab her toes and ankles. She willingly held my hand and laughed all the way from her toes when the first really big wave knocked her right off her feet. Without much prompting from me, it was as though she immediately had a respect for the power of the ocean – she would walk forward juuuuuuuust far enough to get a good splashing but not so far that I started to panic.

And there we stood – hand-in-hand – at the shoreline of the great Pacific Ocean for more than an hour. Do you know what it feels like to touch pure joy? I do. It feels like the hand of a six-year-old in the hand of a mom who knows exactly what her little girl is thinking and feeling for 60 minutes. It’s the communication of a thousand pages of unspoken words. It’s the heart massage of laughter that comes all the way from the toes. It’s the tickle of a voice bubbling over with excitement. It’s taking the one-two punch of sand in your hair and salt water in your mouth then getting up and shouting, “Another big one!!” while stamping at the receding water with your feet. It’s a brief and fleeting moment of unified understanding.

Our adventures went on through the day – a stubbed toe on the way back from the beach, enough time in the swimming pool to turn us both to prunes, a luxurious bubble bath in the ridiculously amazing bathtub at the hotel – but Helene is back where we started. She is perched in a patio chair, surrounded by her favorite blankets, eating a peanut butter and jelly sandwich and staring wistfully at the ocean. A bagpipe player is going on in the courtyard below, and after each song, Helene claps and says, “Well done!” (Which only proves the Irish somewhere in our cross-pollenated bloodlines.) She has been sitting in that chair for nearly two hours, utterly transfixed.

Half Moon Bay from balconyHelene curled into balcony chair

I think back to a night – at the pinnacle of the stressful time that was the divorce from my ex-husband – when I escaped to a friend’s house in Bodega Bay. I hadn’t slept in the better part of a week, but the sound of the waves crashing against the rocks below the house lulled me to sleep like the perfect lullaby, somehow giving me the strength to keep going. And, I wonder … I wonder if this little day trip is the same kind of magical respite for my little girl from the chaos and disorder of the outside world or the jumble of signals firing in her brain that never quite transmit. Whatever it is, I am looking at her right now without a shadow of doubt that she is happy and content. It is one of the best vacation days I could possibly ask to have.

“Mother Bear,” Helene says to me, “isn’t it beautiful?”

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