Tag Archives: non-verbal child

Why a wave matters, thoughts on parenting a nonverbal child

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nonverbal

Why a wave matters, thoughts on parenting a nonverbal child

“I had a dream last night that Evangeline started talking,” Sergei tells me as we tag team through our early morning duties to get our four children off to school.

I smile at the thought … we both seem to dream about Evie speaking to us at different times … and busy myself making peanut butter sandwiches for the girls’ lunches.

About our girl

Evangeline is six. We adopted her from Ukraine when she was two and a half years old. She has Down syndrome like her older sister Polly.

And so far, she is nonverbal.

For a while after Evangeline came home, I thought it would just take time and therapy for her to start speaking. I assumed that nonverbal meant  Evangeline would not be able to communicate with us until she could use words.

It has been a struggle. Evie doesn’t initiate closeness. She tends to stay to herself. She watches the world with her cool blue eyes and I wonder, “oh baby girl, what are you thinking?”

I ache to know.

I dream of her whispering the desires of her heart in my ear.

But that is not happening today.

So I work at learning the language she does speak.

When Polly hugs her too hard and Evie cries, I teach Polly. “That’s Evie’s ‘no.’ She doesn’t like you hugging so hard. Be gentle.” When Evie takes my hand and leads me to the bathroom, I know she wants to take a bath. When she brings us her pecs (pictures exchange communication system) picture of a pudding, I happily give her a snack.

I don’t take these things for granted. They are huge milestones for our girl, and I am thankful her world is opening up a bit more. I am thankful she is starting to understand that she has a voice. I’m thankful she is starting to believe she can trust us with it.

But my mother’s heart craves more. I want to hear Evangeline’s actual, audible voice making words. I want to talk to her. I get angry on her behalf, because she should have more in life, and I get sad … because, honestly, it is hard work for both of us to try to speak the same nonverbal language.

The school bus is almost here.

I zip up Evie’s fuschia spring coat with yellow and light pink swirls on it, smooth her corn silk hair from her forehead, and look my heart-shaped faced daughter in the eye. She allows me a gaze, a prize for the day as eye contact is hit and miss.

“We love you sweet girl. Have a great day at school.” The yellow school bus pulls up to the house, I clap my hands twice, signing ‘school,’ and watch my husband gently lift our girl up into his arms to take her outside.

I sigh, look around, realize there’s still much to be done to get the other girls ready for their day, and call to Polly to get dressed.

“Hey, guess what?” Sergei says to me as he comes back inside, closing the front door behind him.

“Before Evie got on the bus, she turned around and waved at me.”

My husband’s words stop me. Tears well up in my eyes.

“Like a real, intentional wave?”

“Yes, a real, intentional wave.”

“As in, ‘bye?”

“Yes, as in ‘bye.”

We look at one another for a second as our other children buzz around us.

Sergei smiles.

I smile.

Who knew that an intentional wave could make a mother cry?

I’ll tell you who. A mother to a child who is nonverbal.

Our daughter Evangeline waved ‘bye bye’ to her father before getting on the bus.

That matters …

It matters so much.

And I realize. She is speaking … we just have to slow down enough to hear her.

What to do with a severe and profound label for my daughter with Down syndrome?

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What to do with a severe and profound label for my daughter with Down syndrome?

I am immobile this morning.

It happens with me, what with my struggle with depression, parenthood in general, kids with special needs, pre-teens with attitudes, hang nails, you know, big stuff.

Sergei and I had a an eligibility meeting a few days ago with our daughter Evie’s (6 years old, Down syndrome, adopted from Ukraine) school regarding her services and placement. 2 hours 15 minutes later, we left with a promise to reconvene in two weeks, and somehow I feel like I got in a fist fight (usually do after IEPs).

Evie tested in the severe range of disability globally for her three-year re-evaluation. Her team at the school suggest we place her in a severe and profound classroom, so Sergei and I are researching here in Chicago with plans to visit schools. I don’t want her in a severe classroom, but I also don’t want her to get lost in a moderate classroom (where she’s been, and she does get lost a bit). The psychiatrist said it was difficult to test her because she wouldn’t do, well, anything.

I seriously don’t know what to do … And having the severity of her delay on paper is knocking the wind out of my sails, even though I knew it already.

Bad timing to feel like I am losing my voice when I need to speak on her behalf.

So, what should I do?

Well, I know there are a few things I MUST do:

1) Pray. I am a person of faith, so I should take this conundrum and all the emotion and questions wrapped up in it and place it at God’s doorstep.

2) Research the severe label and visit severe and profound classrooms in the city to see for myself if this setting would be a good fit for Evie.

3) Let myself grieve the news. You can’t get above, below, or around this kind of stuff. You have to go through it.

4) Spend time with Evangeline. At the end of the day, she is still the same little girl I know and love … so I’ll focus on her, and thank God for her, and put the papers away, at least for a little while.

What do you do when dealing with difficult news? Any of you have a child in the severe and profound disability range?

This little light of mine, watching my daughter with Down syndrome “get it” with PECS

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Watching my daughter with Down syndrome “get it.”

This little light of mine …

In 2009, we adopted our youngest daughter with Down syndrome, Evangeline, from Ukraine.

“Why do you want to adopt her?” I was asked one bright, humid afternoon in the orphanage yard outside of Kiev.

The worker looked me square in the eyes. Her words knocked over my soul. That morning, I blinked back tears while holding the worker’s gaze, and squeezed Evangeline to myself.

Don’t worry, baby. We’ll show ‘em. We’ll show all of them. You are a light.

I’m going to let it shine …

Right away, it was apparent that Evangeline’s cognitive delays due to her extra chromosome were more severe than our biological daughter Polly’s, who was waiting for us with grandparents back home in the States during the adoption.

But it made sense.

Polly had early intervention from nine weeks on.

Evangeline was abandoned at birth, and went in and out of different peoples’ hands at the orphanage.

Polly had been showered with love.

Evangeline probably spent most hours in her formative years alone.

This little light of mine …

We’ve now had Evangeline for over three years.

She’s had speech, occupational, and physical therapy. We’ve signed with her, and attempted picture communication with her in the past.

But cognitively, specifically in the area of communication, she hasn’t made a whole lot of progress.

Emotional changes have been huge, and celebrated, things like seeking comfort from mom and dad, playing with sisters, enjoying school, and church, and our new dog Scout.

But as far as gaining communication skills, Evangeline’s little light has been less than a flicker here and there.

I’m going to let it shine …

Evie’s lack of communication frustrates and saddens me because I WANT to see her light shine in the area of communication.

To me, she already shines because she is my daughter and I am her mom.

But I want to know her thoughts. I want her to be able to communicate with me, with her sisters, with Sergei, with the world.

This little light of mine … 

We’ve recently started Evangeline with a new speech therapist outside of school.

Last Thursday when she came, she brought PECS with her (Picture Exchange Communication System), a fancy term for a Velcro board, and laminated pictures of things that will motivate communication with a child.

I was nervous. I was afraid Evangeline’s light wouldn’t flicker. Could either of us, my daughter or I, handle more disappointment?

I’m going to let it shine …

“We’ll start slow by picking one thing Evie really likes,” her therapist explained. I got some chocolate pudding and sat myself down crossed legged in front of Evie, her therapist sitting behind her to guide her hand.

“Hold the pudding in one hand, place the PECS book in front of you on the floor. As soon as she reaches for the pudding, guide her hand to the picture and help her pull it off. As she is reaching to give the picture to you, open your free hand. Say 2 words and show her the PECS picture (“my pudding,” “yummy pudding,” etc.).”

I took a breath. This was going to be hard. And I was afraid it wouldn’t go well.

“Now, realize, this might take a while. Usually kids need the reminder repeatedly to reach for the picture instead of the object they want. Then we may go to tapping her hand, touching her elbow, or giving verbal cues. It takes time, but that doesn’t mean Evie won’t get it.”

We started. Evangeline was jazzed about the treat, and at first, accommodated the picture for the reward of a spoonful of chocolate pudding.

After three or four offers of the pudding: her reaching for it, guiding her hand to the picture instead of the spoon, helping her pull it off and handing it to me …

She got it!

EVIE GOT IT!

I’d say, “Evie do you want pudding?” and she’d then, just after 10 minutes reach for the PECS picture, pull it off and hand it to me all by herself.

What a moment.

The light, that I know is there, was there, will be there, in my daughter shone brightly.

Evangeline was proud.

Her therapist grinned.

I bawled, and cheered, and thanked God for pudding.

Who knows what this will mean in the long run, but I’m taking as I see it.

A little girls’ light bulb glowing a bit brighter.

 Let it shine, let it shine, let it shine!

Where are you headed as a special needs parent for school?

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 Where are you headed as a special needs parent?

I’m talking about school.

On Facebook yesterday, parents were posting pictures of kids lined up by the front door, or at the bus stop for the first day of school.

School doesn’t start for my kids for a couple of weeks, but today I somehow managed to take all four of my children to Kmart to buy backpacks and tennis shoes (and I must say, we barely made it out alive. I asked the check out person if they sold any cold drinks with an eyebrow raised, and she quickly replied that Kmart did sell cold drinks, but not the kind I probably wanted ;) ).

I am ready for school to start, but I am nervous too. For special needs parents (well, any parents for that matter) a new school year brings a lot of emotion.

So I ask you: Where are you headed as a special needs parent?

I have one daughter with Down syndrome headed into a mainstream first grade classroom with a full-time aid, and another daughter with Down syndrome going back to a self-contained preschool classroom.

Polly’s still not fully potty trained, and I’m not crazy about Evangeline’s placement. For those of you who are farther along in the journey of parenting a child with special needs, does the beginning of a school year ever get easier?

As a special needs parent, I’m headed towards worry, but I want peace.

What about you? How old is your kid(s) and where is he/she/they headed this year for school?

And are you headed towards worry, or peace?

(Be sure to catch this Friday’s guest post by Paige Hamilton, a homeschooling mother of five! (GULP!) Can’t wait to hear what Paige has to share about fresh starts to new school years.)

(If you’d like to guest post for me, email me at gillianmarchenko@gmail.com.)

She’s enough: Parenting a child with “low functioning” Down syndrome

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Parenting a child with low functioning Down syndrome is tough.

I have two children with Down syndrome, and they are very different. Just six months apart in age, Polly (who is six) is counting, she knows her ABCs, talks a mile a minute, and is learning to read. Evangeline (adopted from Ukraine in 2009) is non-verbal. She signs more, bye, and sing. To many, she would be considered low functioning.

I hate to put kids in a box. I stay away from terms like “low functioning,” but sometimes in the quiet of the night, I find my heart thump louder and my eyes fill up, because Evangeline is not communicating with the world. She doesn’t interact with those around her. And it hurts.

This post is about Evangeline.

As her mom, I want more for her. I want her to enjoy people and places, and to learn and grow and develop.

But also, if I’m honest,  I want more for me, and for my husband, and for Evangeline’s sisters. I want to know what she is thinking. I want her to look me in the eye and call me mama.

Sometimes it is difficult for parents in the special needs community when they don’t see their children doing the same things as other kids they know.

I live in that dichotomy every day with two children with Down syndrome under the same roof.

This morning, Evangeline came into my room while I was asleep and crawled up on the bed.

I love that she comes to me. When we first brought her home from Ukraine and a long time afterward, she wanted nothing to do with me. Now, she not only tolerates me. She seems to like me.

With a little prodding, I convinced her to crawl up next to me. She cuddled under the blankets, and although she didn’t want to hug me, she was with me.

I studied her beautiful crystal blue eyes. Her heart-shaped face. Her smooth golden hair. Her full ruby lips.

We’ve had her home for three years, and she is growing and developing. She puts blocks in a bucket, plays with toys, looks us in the eye, and leads us by the hand to show us what she wants. If Evangeline took a test today, she would probably score around a 9 to 12 month level in most areas although she is five years old. And I’m not going to pretend that doesn’t hurt, and that I don’t worry about her future, and my future caring for her.

But this morning, lying together in my bed for a few quiet moments, I sang “Jesus loves me,” she smiled at me fleetingly, scanned the room, then flicked her eyes back to meet mine.

This morning, she was enough.

My job is to help Evangeline meet her God-given potential. But I am not the judge of potential. What if this is her potential? To smile, and laugh, and feel safe and secure with us?

Of course, it’s hard to say. And I will continue to pray and seek out therapy and help in an effort to hear Evangeline’s thoughts spoken to me one day.

But this morning, thankfully, because I needed it, God reminded me.

She’s enough.

Check out my friend Christie’s post Functioning to hear more on the subject. And if you are a blogger and have written about what functionality means to you, leave your link in the comments :) .

A child who is non-verbal still has a voice

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Our five-year-old daughter Evangeline (who has Down syndrome) is non-verbal.

But every day her life speaks volumes.

Read more about our wonderful daughter:

Learning the language of my non-verbal child

Here

And here

Learning the language of my non-verbal child …

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The misconstrued assumption that she has no language

I’m a writer.

A reader.

A word person.

And my five-year-old daughter, fourth in the line of sisters, has no words.

At times her inability to speak brings tears to my eyes. Somehow, without my full approval, part of me has decided that because she cannot yet speak, she has no language.

Evangeline came to our family from an orphanage in Ukraine when she was two years old. I suspected she would not be speaking. It usually takes kids with Down syndrome a bit longer to gain the strength and coordination needed to produce words and her start in life wasn’t great. No therapy, not a whole lot of social interaction.

I was right. She wasn’t speaking.

Two-and-a-half years later she still is not speaking (although she said doggie last week out of the blue, clear as day, hit me right between the eyes, can I think of any more cliches to get my point across?). Once in a while she makes a sound that is close to “Hi” or “Papa”, and we take it. We dance, give high fives, smile, laugh.

This is it! She’s going to start speaking.

But she doesn’t. We all talk to her, sing to her, sign at her but she doesn’t speak.

Realizing her language

I want to hear her voice. I want words.

But I don’t get them.

I pray. “God, help me. I don’t know how to do this.”

And he answers with one word.

Language.

And I am reminded of my past. Our family lived in Kiev, Ukraine (the city my husband was born and raised) as missionaries for four years. Our plane landed on the hardened, snowy Ukrainian soil (January’s not a great time to move, um, anywhere) and the only words I could put forth confidently in Russian were, “Hello, my name is Gillian.”

So I studied.

I studied Russian every day for over three years. I ate, slept, breathed Russian, and still it took a long time to speak. And so I got by in group settings on body language. I laughed when everyone else laughed. I met eyes with my husband to see what he was doing and copied him. I watched. I observed. I learned the cultural language in Kiev way before I learned Russian.

In those first few months it meant a lot when someone in Ukraine spoke English with me. Even if he or she didn’t know my language well, I appreciated the effort.

Learn her language, Gillian, even if it is not the language you prefer. She has a voice. Make no mistake, she is speaking to you.

Learning her language

I begin to pay attention to my daughter. I watch. I observe.

Indeed, she speaks. Even without words or signs, Evie communicates.

*A shoe thrown at you – please, take me outside.

*A small hand leading you to the bathroom – I want to take a bath.

*Arms reaching up - hold me.

*Finding her purple coat and bringing it to you – school.

*Going to her seat at the kitchen table and getting in – I want to eat.

Days pass and Evangeline gets more comfortable as a member of our family. She speaks to us in the way she knows how. As we’ve taken the time to learn her language, she is freed up to speak more. She has two signs now: music and more.

We still talk to Evie all the time. We teach her signs with hand-over-hand prompting.  I praise God for the communication my daughter and I have, and still, I petition for actual words. My dream of one day hearing a whole, clear sentence out of my daughter has not dissipated.

But I am thankful God slowed me down enough to realize Evangeline has a language, even though it may not be one I prefer. Having kids really isn’t about our preferences as parents though, is it?

Every person has a voice.

It was a lesson I desperately needed to learn.

My five-year-old daughter who is currently non-verbal has a language.

And it is up to her family to learn it.

Do you have a child who is non-verbal? What’s his/her language?