Beyond Words

By, Lisa Wasikowski

 

“Every one of us is different in some way, but those of us who are more different, we have to put more effort into convincing the less different, that we can do the same thing they can do, just differently.”  Marlee Matlin

She’s not Deaf nor Hard of Hearing, but she is functionally non-speaking.  Not on the autism spectrum.  Not mute.  I started teaching myself sign language when she was born, then decided to take ASL classes all last year, which changed my life, and the ripple effect ensued.

Present day, we are embroiled in a battle with the district to determine what my daughter will get in terms of a kindergarten class.  The district doesn’t get it. Just because they feel she’s a hearing girl in the hearing world, that hearing world doesn’t invalidate her requirements for a Fair and Appropriate Public Education.  Legally, they have an obligation to fulfill the needs, but around every turn, despite four professional speech and language assessments, all in agreement about the most appropriate school setting for her, we’re continuously blasted with roadblocks and slammed doors.

Apraxia of Speech.  It’s her newest diagnosis, formally added to the list a couple weeks ago.  A name put to the condition everyone already knows about.  My husband and I have been telling them she’s not refusing to use her voice, she’s unable to use her voice.  Big difference.  It’s a neurological disorder affecting the muscles responsible for forming sounds to produce verbal speech.

The district believes if she is in a non-ASL friendly classroom, she’ll suddenly find her voice.

I resolved to find her a language she can work with.  Sign language: an obvious choice, but it took for her to be ready.  This child moves in her own way, at her own pace, and it drives me nuts!   She cares not about schedules or agendas, though I think she appreciates the effort.  She’s taken to sign language, despite her uncoordinated hands, and the tendency to favor pace over precision.

Conversation IN SIGN LANGUAGE.  I told her I love her, and I love that she talks with her hands.

Her:  “Frustrating, sad”.

Me:  “Why?”

Her:  “Hands no work.”

Me:  “They work, you just need practice.”

Her:  (Big sigh and big eye roll.)

Me:  “Practice, practice, and more practice.”

Her:  “Colors.  Red.  Orange.  Yellow.  Green.  Blue.  Purple.  Silver.  Gold.  White.  Black.  Brown.”  (She paused, took in a breath, raised her hands above her head, and let out the breath while slowly lowering her arms.)  “Sad.  Happy.  More.  All done.  Friend.  Family.  Ball.  Dog.  Cat.  Mischief.  Love.  Book.  School.  Learn.”

Me:  “Nice vocabulary list.”

Her:  “Thank you and you’re welcome.”

She’s amazing.  We tell her every day.

She raises her hand and shouts “EEEEEEE”.  We talked about superheroes and what she wants to be.  She wants to be… herself, with “E” as her emblem.  It’s her favorite letter.  A blinged out outfit with a cape, and a hat, but no hat because she doesn’t like wearing a hat, and no mask because…things on her face…but might carry the hat or mask around because it’s part of the outfit, and it’s sparkly, and makes rainbows, and makes the people want to give her fish n chips.

She’s different.  So am I.  So is my husband.  So is everyone.  Her differences can be intimidatingly uncomfortable depending on the filter, but she doesn’t know.  Someday she’ll know.  Someday she’ll see the differences and I hope she still believes in her amazing.

This morning,

Me:  “You’re amazing.”

Her:  “I know.”

Me:  “How do you know?”

Her:  “Because I am.”

Staring down the barrel of kindergarten, with an unwavering eye and a battle-cry:  “I am different – not less.”  — Temple Grandin

I am different.  I am.  Have been aware of it my whole life.  Constantly misunderstood because of my lack of filter and persistent vocal monotone, and my awkward way with social settings.  Sign language helps me say what I want to say without fear of being misunderstood the way that vocalizing does.  I’m nowhere near fluent, still clinging to the sides of the pool, but gaining confidence in my skills by the day.  Gives me a different kind of voice, so in that way, I completely relate to what my daughter deals with.  Being different and being her mom makes me a perfect conduit.  The system’s tendency is to isolate rather than to integrate.  I understand this on a very personal level.  How much richer a system we would have, and a society we would be if differences were embraced rather than excluded.

When she was two-and-a-half, we enrolled her in an outdoor school: an effort to show her love and freedom following a life spent between home and the hospital.  Tonsils and adenoids out.  Immune system strong enough to withstand sharing space with her peers.  Days outside, playing in the dirt, harvesting vegetables and herbs, reading books on the hillside, feeding the ducks and geese.  No one knew any sign language, and her signs were a healthy mix of her own custom creations and conventional signs.  Still fragile, never been out of our care, and was expected to fend for herself amongst strangers for four hours at a time.  The director urged me to have faith because kids adapt.  The grounds are gorgeous, the staff was attentive and engaging, but she struggled.  I’ll never forget the frustration and tears, but that was when she finally started to understand the need for conventional language when we got serious about learning ASL.

Wasn’t until a little over a year ago I signed up for classes.  ASL 121 at a nearby community college, committed to a quarter, then another, and another.  Not exactly immersion, but my teacher is Deaf and required Deaf culture fieldwork.  I learned about an organization a mile from my old stomping grounds.  It houses a bilingual preschool (ASL and spoken English), a dream come true!  I messaged them, met with the director, toured the school, observed the class, met the teachers, and arranged for my daughter to try it out at the end of last school year: an immediate fit.  They loved her.  She loved them.  I acquired volunteer status in order to provide her with the extra help she needs in class.

She officially started in September.  We commute forty-five minutes to school, three days per week, but we use the time to find Glee songs on the radio, and dance, and laugh, and welcome the day.

Until September of this year, school was a struggle.  She had one year with a teacher who knows a good deal of sign language and used it in the classroom as part of the curriculum.  My daughter made friends and loved being in class.  Last year, she didn’t have the access to sign language, made no friends.  This is the most social kid I have ever met.  She was lonely and sad, and the teachers didn’t know what to do with her, and the stress took a huge toll on her physically.

We mistakenly thought special-ed would be an all-inclusive, pretty package.  Wrong!  Non-verbal / hearing kids are usually on the spectrum and use PECS and AAC devices, which are all the rage.  Here we are, fighting a legal battle with the district to get her in an ASL-friendly-classroom and overall school environment. Instead, they’re pitching a non-ASL-friendly-school-and-classroom-environment with heavy reliance upon pictures and computerized systems for communication, because she is hearing.  She scored in the “good” range on the BAER.  Imagine praying for a hearing deficit in order to avoid fighting for appropriate placement.

I get disagreeing and I get monetary unaffordability.  What I don’t get is the outright refusal to bend or help find a more fitting placement out-of-district.

There is another option, other than the fight.  Move.  Move out of district.  We wouldn’t be the first.  We wouldn’t be the last.  We’ve talked about urban life and how much we miss being in the city.  Greenlake was nice.  Even the crappy little apartment right above Portage Bay has me missing the city.  I woke up to the UW crew team rowing by and sea-planes taking off from and descending to Lake Union.  I had a car but walked everywhere. That crappy apartment is less than a mile from the school we want her to attend.  So we daydream a little, but nothing is solid.  Out-of-district is the only way for an ASL-friendly-school-environment, but it’s not an option yet.  Homeschooling is on the table, a last resort right above surrendering to the bottom of the barrel.  Too many hands in the pot and too many of the wrong hands in charge of signing the release papers, it shouldn’t be this difficult.  Kid in district needs services only offered out of district, so district signs off and wishes her well so said child can receive said services out of district.  Easy, right?  You’d think so.

Let’s be clear.  My husband and I absolutely want her to learn to use her voice.  She’s trying.  She has speech therapy twice a week, in two different places, with two different specialists.  Every day we hear more and more sounds from her.  We believe someday she may be fully verbal and fluent in ASL – bilingual.  It’s not like we haven’t tried school without sign language.  We did.

Wasn’t our choice, but we did, and it failed her miserably.  She needs both.  She has both now.  She needs both as she continues into the future.

This year she’s in a class she looks forward to, surrounded by people who speak and use sign language, adults, and kids.  She’s not seen as different.  She’s one of the gang. This year is a blessing.  This year is a series of answered prayers.  This year is the best-case scenario.  Imagine being exactly where life is golden, where it all makes sense, where you live and breathe naturally, and seldom wish to leave.  Now imagine someone trying to take it all away, which is essentially what the district proposes for next year.  She ages out of preschool, whether we like it or not, and the road ahead needs a bridge.

The hospital told us when I was pregnant that kids like our daughter rip families apart.  It’s not our kid.  It’s the system we have to deal with to get our kid

what she needs.  What the district is doing is cruel, and expensive, and dangerous.  Crap like these tears families apart whether they proceed and obtain a lawyer or simply give up and hope for the best.  The system has been making advances, but it’s still relatively archaic.

The first people to influence my decision to learn ASL were my aunties.  Bio auntie recently retired from working as an ASL interpreter.  Bio auntie’s life-partner is fully Deaf, works as a professor.  They’ve been my touchstones, my allies, and my home-away-from-home support system.  Could have started long ago, but I wasn’t ready.  They also have a strong bond with my daughter.

I’ll never forget, she was maybe three years old, still not walking yet.  Her only verbal words were “all done” and “dada”.  I put her on my Deaf auntie’s lap.  Usually, my husband and I feel the need to stick around to interpret for her, but I left the room.  The two of them chatted for what seemed like an hour.  When they were done, my auntie looked at me, somewhat shocked, said she was really impressed, that my daughter has a “Deaf mind”.  I didn’t know what that meant then, but now I realize, not only is it high praise, it’s confirmation we are exactly where we need to be, doing exactly what we need to do.

Saturday, it rained.  We contemplated what to do, decided on popcorn, a movie, and under the sheet snuggles.  The pitter-pat of hard falling rain on our roof can be distracting.

Her: “Loud!”

Me:  “Yes.”

Her:  “Rain!”

Me:  “Yes.”

Her:  “Sky water.”

(Wow.  She must’ve seen the expression on my face.  She gave me a kiss.)

Her:  “You’re welcome, mama.”

Don’t think for a moment any of these shared conversations would happen verbally or by relying upon pictures.  She loves pictures, but not for the sake of replacing her conversational skills.  Right now her verbal vocabulary list is about five words long, while her signed vocabulary (regularly used) is over two-hundred words long.  Sign language is not only our gateway, it is our bridge, our lifeline.

Rachel Coleman, host and co-creator of Signing Time, “I see signing as an essential parenting tool, but only if you’re interested in fewer tantrums.”

With the help of sign language, we have access to our daughter’s thoughts and feelings.  She doesn’t really have tantrums.  She has short outbursts, quickly met with direct attention to zero in on what she needs, usually resulting in near-immediate resolve.  My husband and I realize how uncommon communication like this is, which reinforces that we are exactly where we need to be, doing exactly what we need to do.

Fear is what separates us, not differences.  After all, differences are what everybody has in common.

Before committing to learning sign language, it never occurred to me anyone might try to fight us.  Real fear is seeing her in distress with no way of knowing what’s wrong.  Real fear is succumbing to the illusion that she’ll never be functionally independent because she’ll have no grasp on language.  She’s doing well with sign language, so what’s the problem? Even the idea of placing her in an out-of-district public-school with an ASL program that wouldn’t cost them a dime is met with resistance.

We continue to build our bridge, regardless.  I’m on one side of the chasm while she’s crossing to the other side.  All of the people who’ve been there to help build this bridge are our community now.  It’s not about English being better or sign language being better. For the sake of effective communication, both are invaluable to us. I am constantly taken aback by the district, how brazenly unapologetic and inflexible it is.  Regardless of where they stand, with sign language we have a bridge all of us can share, and that is everything.