invisible

..

she’s right here

can’t you see her?

do you remember snuffleupagus?

for years, he was invisible

until he wasn’t

only big bird could see him

and then we all could

i never knew why

now we stand here with my daughter between us and i wonder if i’m big bird to her snuffleupagus because clearly you can’t see her

i would laugh at the image

if it weren’t so very, very unfunny

no, it’s not funny at all

why can’t you see her?

she’s right here

why are you asking me what she is feeling?

i am not her

i do not feel what she feels, see what she sees, know what she knows

why would you ask me?

if you ask me i will ask her

why don’t you see her?

because seeing her demands your patience, needs your energy, takes your time, requires your heart?

is that why?

is that why you choose not to see her?

because it’s safer?

because you know that if you interact with her she’ll demand that you show up?

that engaging with her means that you’ll have to feel something?

are you afraid that your entreaties might fall flat?

that perhaps there will be an awkward moment?

that you might look foolish because you’re not sure how to speak in her language?

welcome to her world

is it fear?

fear of judgement, fear of exposure, fear that seeing her will mean being seen in return and maybe, just maybe, that prospect terrifies you?

she deserves better

she is a human being

she’s right here

take the risk

see her

for both of you

**

Here are some tips:

Use Brooke’s name to let her know that you are talking to her.

The number of words you think you need? Cut it in half. (It’s actually kind of liberating. If this really stumps you, pretend you’re composing a Tweet.)

Give her time to process your words and respond to you. The amount of time you think you should wait before repeating what you’ve said or prompting her to answer? Triple it. That place you think you have to be immediately or that email that you feel compelled to check right this very second? They’ll wait. Slowing you down is one of her many gifts.

Don’t assume that eyes are ears. Eye contact can be extremely uncomfortable for my child. Please do not think that just because she may not be looking at you, she’s not hearing you. She hears everything.

Speak clearly. Please note, this doesn’t mean slowly and / or loudly, a la Grandpa shouting in English for the benefit of a non-English speaker. It just means speak clearly. Try not to let your words run together. They take more time to process that way.

Don’t be afraid to ask questions, of her or any of us who love her. We are more than happy to help. But if you’re going to ask us something about her, please do it discreetly so that you are not talking around, over, above of through her. See above — she can hear you.

Put yourself in her shoes. Really, truly think about how you would feel if you were her. Offer her the respect that you would want shown to you were you standing right in front of another person.

Trust that we will jump in to help if need be. We’ve been at this a long time. We’re not going to stand by and let you flounder.

If all else fails, sit with her. Watch her. Get to know her. Just be. Together. It’s a pretty neat thing, this. Dont’ underestimate the power of just being with another person.

In one of my favorite passages from I Might Be You, Barb Rentenbach, who is nonverbal, writes,

We are not hiding. You search with limited senses and therefore our humanity is camouflaged to you.

Be still. Be quiet. Be. We notice you on the glacier. We observe you completely. Language presentation is the barrier to our friendship — not sentience or intellect.

We do not speak your language but you can speak ours. Be still. Be quiet. Be. And now be with us. Our silent and invisible language is that easy to learn. Feel it?

Welcome. Our friendship has begun.

Pure. Simple. Beautiful.

Just be.

Make the effort, won’t you?

My daughter — our children — human beings — are worth it, I promise.

 

13 thoughts on “invisible

  1. I have had many instances where this has happened….you go to the grocery store, someone you’re aquainted w/ sees you and then notices your child w/ autism in the basket and then they turn and walk away, sometimes w/o even any type of acknowledgement or a “hello”. One of the women that did this to me had, in the past, asked me to go shopping w/ her in NY! Really, but you can’t tell me hello when my autistic son is w/ me? Really????

  2. I have been trying to write a letter to the parents in my daughter’s kindergarten class for over a week. Your tips are exactly what I want to convey. It seems that whenever I am unable to express what I want to say- your words touch me in a way that not only inspires but comforts. Thank you!!

  3. Jess, I have to thank you for posts like these. Even though there is a twelve year difference between Brooke and my wonderful boyfriend, and they are very clearly very different people, I return to so many of your posts frequently. I didn’t know when I found your blog three years ago that I was in training for my future. I’ve learned to give Elijah extra time, to find ways to structure chaotic environments, to stop expecting a “normal” life with him. And it has given me more joy than I could ever have imagined. Thank you, for inadvertently teaching me so many tools and skills to communicate with and understand my partner. It’s improved my life tenfold.

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