Several months ago I picked up a children’s picture book on Helen Keller
I don’t know why, other than it was displayed prominently on a top shelf, propped open as a feature. I grabbed it, added it to the pile of books we would inevitably return late, and thought little more of it.
I mean, it’s Helen Keller. We all know the story. She was born blind and deaf. So sad.
At least, that’s what I mostly remembered from my elementary school days. And it seemed like a homeschool-y kind of thing to teach Henry. Addition. Subtraction. Christopher Columbus. Martin Luther King Jr. Helen Keller.
Except that I opened up that big, bright picture book, and found myself in a puddle of tears. My mouth wide open. My heart about to burst. A mix of anguish, guilt, and relief. But mostly Hope.
I had no idea that Helen Keller would soon be my muse. Funny how that goes.
Jill is mostly non-verbal. She has a handful of simple words, a few signs, and lots of moans, grunts, whines, and pointing that does the bulk of her communication with us. She “talks” to us…just not in the English language.
The truth is, being the parent to a non-verbal child is HARD. Oh so very hard some days. Downright exhausting. My Pity Parties are usually the biggest and fiercest when I let myself think too much about parenting a non-verbal child.
Because while Jill may not be able to speak, she understands. So so so so much. Even more than I think any of us realize. And frankly, the last few weeks she has done things that have been completely knock-you-to-your-core-eye-opening of just how much she understands. Just how much she “gets it”. Which, in some ways makes it harder. Or it seems like it anyway.
The harsh truth is that Jill is trapped in a body that will not cooperate with her. Not her limbs, not her tongue. She wants desperately to run and skip and jump and ride bikes. But her legs will not let her. She wants to sing and talk and converse. But her mouth will not form the words that I am certain are perfectly legible in her mind. Something disconnects between what is probably perfect in her mind…and what comes out in her body. It’s really a long path to travel. There’s a lot of synapses the must fire just so. It’s a wonder any of us can do it.
It is quite possibly one of the most heart breaking things in my life. To watch my girl become so frustrated. So angry. So baffled. Or worse, the times she seems to give up and just plays alone quietly because it’s easier than trying to participate.
I have been this mother. Holding back. Physically restraining. Shushing. Assuring. Rocking. Whispering in little ears. My heart breaking behind that wild hair. It was a strange relief to know that I am not the only one. Even now, typing these words, I cannot look at this picture, a cartoon really, and not cry. It is a motherhood I did not envision. It is equal parts soul crushing and exacerbating. I cry because I am sad. I cry because I am tired.
“But she could not make up enough signs to have her needs understood. Many times she screamed and kicked and ended up sobbing. Sometimes she hit the people she loved.”
“Helen screamed and threw her spoon on the floor.”
Jill yelled and threw her bowl of Lucky Charms across the kitchen.
I often wonder how hard it must be for her to see her little brother…the baby…three years her junior…running and climbing and playing with the Bigs…while she sits on the sidewalk watching.
It’s hard. It’s hard on all of us some days. The Others get frustrated too. That Jill is messing up their game. That Jill is screeching in their ear. That Jill is hitting them.
They are so good with her. So patient. So kind. Their frustration never unleashes on her. They just know. While they may fight and bicker and even sometimes hit one another…they have never, ever, EVER lifted a clenched fist to their sister. Not because Andy and I have parented that in them…no, we can take no credit…but because they simply understand. God has wired their hearts perfectly for our family.
Jill has no other choice but to sometimes screech and hit and flail. We cannot say “Use your words, Jilly.” We work with her to be patient, and she has been known to get a time out when her screeching and hurting is over the top…after all, she must still be kind. Just like her siblings. God’s standards do not change. His bar is not lowered. She must still be parented. Her special needs do not give her a Get Out of Jail Free card for every behavior. But it is a tenuous balance between the grace we must extend, and the discipline and guidance she must still receive. Parenting is never black and white, or so I’ve learned, but the shades of grey are even deeper and more nuanced with a special needs child than I would have ever imagined.
The first time she was required to sit on the Time Out bench…a small wooden bench that my dad made over 20 years ago…she looked at me incredulous. Her pink mouth opened into a perfect circle. Her blue eyes wide as saucers. Unmistakably “What?! ME?! MEEE???? I”M getting a time out??? But I’m Jilly!!!!” That little expression made me giggle, and made me feel a little less bad that she was being punished and more confident that it was the right thing to do. I’m never really sure where the line is. But, she had bit her sister. Her sister who cried and bruised, but never retaliated. And clearly, she knew. She was even aghast at the whole thing.
Grey. Warm. Cool. Dark. Light. So many hues. I may never see them all.
We have always wondered how much Jill understands. She tests poorly and scores low on the assessments by the experts…but it’s not exactly fair to show her a picture of a chair and mark her as wrong when she cannot say “Chair”. She knows what a chair is. But she cannot perform the task as the Expert Test requires. And so she tends to rank low…much lower than my mama gut believes to be true.
In the last several weeks, Jill has given us glimpses so clear and shocking that they’ve warranted phone calls to Dad at work. It simply couldn’t wait until he got home.
A simple finger puppet of a chef. “Mmmmmmm….” I realize that seems inconsequential to most, but the fact that she was able to understand: that’s a man, he is wearing a chef’s hat, he makes food, food is yummy. We’ve never sat and talked about chefs. Or that people who wear white puffy hats make food. No. Through books, stories, television. Just like her siblings have learned what a chef is. If I’m honest, probably from watching Ratatouille. Just like her siblings.
A big, giant, gaping view into her little brain. She absorbs. She is learning and understanding not only through our deliberate attempts and fancy therapies, but even passively. There is so so so much in there. It’s just stuck. But it’s still there.
A few days ago I doodled a Mickey Mouse head. Without prompting, she pointed at the picture and exclaimed “Disneyland!” “What, Jilly?” “Disneyland!” Clear as day. Not an approximation. Not something that sounded like Disneyland. But a clear, perfectly sounded, every syllable distinct, every letter articulated, DISNEYLAND.
Cue tears. Fingers that couldn’t dial daddy’s phone number quick enough. Shaking with excitement.
Bedtime: Jill looks around the room “Hmmmmm?” She motioned with her hands…she was looking for something. As I tucked Lu in bed, I picked up the rainbow stuffed unicorn and heard Jill exclaim “Dream Light!” I turned…mouth gaping…eyes wide…”Jilly, did you just say Dream Light?” “Yessssssss.” And then began signing Please. Because that is what she was looking for. Her Dream Light. Not her Toy. Not her Horse. Not her Baby. Her freaking DREAM LIGHT.
Can I get her to recreate these things? Repeat these words she blurted out so naturally? So perfectly? No. Seems like they’re stuck again.
But these glimpses into her little head are shocking.
They tell me that I must keep working. I must keep trying. I must not lose hope.
I must be careful with my words around her. I must not speak about her as if she is not there. I must not speak aloud my frustrations as if she does not understand.
I must not underestimate my girl.
For one day, she will move mountains. I just know it.
I have more to say about this. But I will leave this. Wild and fluttering in the breeze. Tomorrow. Or this will be the longest blog post in the history of blog posts.
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Girl, I love you so much. This is transparent perfection, and I hope a million people read it. I can’t wait to see how God uses Jilly to knock the socks off of people everywhere, and how He uses you to help her get there.
And you thought you needed help writing your book. I remember feeling so broken for you in those early days when things were so scary and so unknown. All I could focus on was that Lucy and Jill weren’t going to get to know each other the way I had envisioned twins growing up together. But I was wrong. Jill keeps on blowing me away! Lucy does too, with the way she helps her sister, staying so patient, bringing her some cactus cooler. :)
That story about Jill’s time-out was priceless. And your words about finding the balance between grace and what must be done was so profound. The classic parenting dilemma.
Ah, Jeannett. I pray for extra energy for you to get through those heartbreakingest of days. And I pray that God will shield you from the burn out and spiritual exhaustion. Thank you for sharing your stories. <3
“I must be careful with my words around her. I must not speak about her as if she is not there. I must not speak aloud my frustrations as if she does not understand.”
This is the most difficult part for other people to understand. Just because Kaitie is still learning how to communicate doesn’t mean she can’t read, count and understand what you are saying. She is still learning how to get her body to do what she wants; sometimes it does, sometimes it doesn’t.
We’ve noticed after a particularly “on” day – more meaningful conversation than useful – she seems to retreat a bit. Maybe her body is overwhelmed like it’s been on a marathon and needs to rest. Or like some introverts, she likes to “be” with people but needs a break to renew her resources.
beautifully written, Jeannett. thank you for sharing these glimpses into your family’s life. You’re blessed to have each other, and to have the Lord to hold on to in the midst of the confusing greyness. we’ll be looking for this book from the library too.
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I love Helen Keller’s writings. I have a girl who has some (very minor) struggles in the whole “brain tells the body what to do but the body won’t listen” area. I cried reading your post about your feisty frustrated Jill. You just keep expecting big things for her!
Thank you for sharing this. It’s like reading about my own life with a severely apraxic child. You are so right, we must not underestimate, which is so incredibly easy. Time and time again they surprise us, and I think they always will.
My girl is IN there – in that body that won’t work for her at all. I know it. She knows it. We’re working on a system for her. Very slowly, but it’s coming.
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Have you looked into facilitated/assistive communication?
http://www.friendshipcircle.org/blog/2011/02/07/7-assistive-communication-apps-in-the-ipad-app-store/
A beautiful post! Reading this makes me realize how precious & unique each God-created life is. Thanks for sharing this. Blessings!
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I can feel your heart in your posts. I teared up at Jilly’s breakthroughs. Can’t wait to see what God continues to do in your family.
This is a tear-jerker of a post, Jeannett!! Now I must get that book for our homeschool year coming up! Perfect.
I love your writing. I could see Jill saying Disneyland! I’m so excited for what she will do next. It hurts my heart to know she has to struggle but that is one lucky little girl to you for her mama.
WOW~ What an eye opening post! It brings me to tears for you & for Jill… for your frustrations and your anguish. But also for your HOPE and passion in parenting Jill and her siblings. Sending healing thoughts & prayers for patience, blessings, and day by day improvements for Jill.
I have a non verbal 3 year old (just a few signs). I just keep waiting for words and we watch a lot of signing times and of course do therapy. Always more therapy. While I haven’t had the opportunity to take my son to an Anat Baniel practitioner, I wonder if that might be a good option for Jill. They have headquarters in California and lots of practitioners out there. And they have done some amazing things with kids with special needs. It’s definitely alternative, but at the root is a belief that the brain can and will be able to do amazing things if given the right tools.
YAAAAAAAAAAAAAAAAAAAAAAY! Go Jilly Go!
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girl. you know.
you know that this is my world too.
we are twinbos like that.
i get it. i get all of it.
and i cry the ugly tears too–out of frustration, out of my non-ability to fix it, out of fear…mostly out of fear.
because this crap is out of my control and he will encounter people who not see what i see, will not know what i know, who will not understand like i understand.
and those people suck.
but there is HOPE.
there is good.
there is progress and hugs and smiles and high-fives and happy tears.
because life is GOOD. all of it. it’s all good.
and jilly, well, she is just PERFECT.
and i wish beyond wishes that i could be hugging you while telling you all of this.
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She is so blessed to have a mama like you. Sometimes that’s hard to believe when we mess up, but know its true. You were perfectly created for her.
I believe God has amazing plans for your sweet Jill. And what a blessing to her that her mama knows it too!
You know what I see? I see God taking a situation that sucks and isn’t fair and making something beautiful. I see Jilly working so hard, and her mama fighting for her, loving her and not giving in when she shouldn’t. And that is beautiful. The example that you both set. The lives that you touch by sharing. The people who now get to have a better understanding and loving heart, because you let us all in.
Way to go, Jilly! And way to go Jeanette. My son Gabe defies the odds each day with the diagnosises and prognosises that doctors have given him. Like Jilly he would love to run and jump with the other kids but usually sits to the side and smiles and laughs as they play. Just recently something clicked in speech and the grunts, sounds and few words have transformed into something understandable. No, everything isn’t understandable and yes, I can understand it better than most but he’s communicating. Again doing what doctors said he may never do. Keep on, keepin’ on mama. Your Jilly, my Gabe these ‘special’ kids are going to rock the socks off the rest of the world!
Busy summer has meant that I haven’t had a lot of time for reading some of my favorite blogs much… Today, this was exactly what I needed to read. My struggles are different than yours and speech delays are small hills compared to this mountain you are climbing.. thank you for sharing your heart and what you are learning about persevering. I understand the small glimpses and how they give us hope. God bless you today.
So much beauty here! You’re so insightful–I just want to encourage you to trust your gut. Screw assessment tests! When david was in third grade one of the specialists said he was functioning at a three month old level–total bologna!
Jill is all there, taking it in just like her siblings and held back by her body. I know it sucks, but never pity her. That girl is strong and amazing. And these challenges are going to make her capable of MORE. Life is so imperfect–she’s learning that earlier than most. And with a family like yours, she is going to be just fine.
Love you friend.
Thank you so much for writing this touching post! I’ve loved reading your blog (especially Insta-Fridays!), but this one called to me for the book involved. The gallery I work for hosts an annual children’s book illustration art show & book signing every December, and in our 2012 show one of our featured illustrators was Matt Tavares, illustrator of “Helen’s Big World.” I thought the story and the art were amazing, and I’m so happy to know that it has reached out and touched your heart. I sent a link to this post to Matt, and he is sending it on to the author of the book as well. Thank you for opening your life and your heart to complete strangers on the ‘net and allowing us this wonderful, amazing glimpse into your world!
Somehow, some way I missed this post. I just discovered it today. I must say, I’m so glad I found it. Simply beautiful and heartbreaking at the same time. Praying for you and your Jilly.
thanks for linking this post because i missed it!
can’t wait to buy this book. helen keller has always been a hero to me.
and now, the beauty i’ve treasured about her life and story hold so much more weight. HOPE.
i am excited to see your jilly girl grow into the hero she is! XO
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