Tag Archives: children with special needs

‘This belongs to’ … realizing who our special needs kids really belong to in a hospital cafeteria

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this belongs to

‘This belongs to’ … realizing who our special needs kids really belong to in a hospital cafeteria

I sit in the hospital cafeteria, a half eaten chicken sandwich and a bottle of water is positioned in front of me on the plastic tray that reminds me of grade school. My foot taps. A loud metronome sounds in my head. Tick, tick, tick, tick.

I scoop up another bite of chocolate pudding with whipped cream, an indulgence saved in my world for hospital cafeterias.

I look around for other parents. You can tell who they are, either by exhausted expressions, or by the white ‘this belongs to’ bag that carries their child’s things during surgery.

In the last seven years since I became a special needs mom, I’ve been in the hospital cafeteria countless times while waiting for one of my two daughters with Down syndrome.

Today Polly has two quick outpatient surgeries. Hopefully, it’s an in and out day; a tooth capped, a tooth pulled, and muck cleared out from the tear ducts in her eyes.

But there have been times when I’ve sat here for a reprieve during a much longer stay in the hospital; a brain surgery, or a scary test, or for recovery from a catastrophic stroke.

I put down my chocolate pudding spoon, and place my trembling hand on the cool white ‘this belongs to’ bag, the only thing left of my child; her scuffed up gym shoes, a pair of jeans, a plain pink shirt, and wait for a page that she is out of surgery, and that I can go to her, take her in my arms, and hold back her hair if she vomits from the anesthesia.

This isn’t the stuff parents dream of when we have children. No one thinks their child will be in need of life saving surgery. We all assume an extra chromosome or another special need will happen to someone else. But not to us.

But this is the stuff of life. Kids get sick. Kids are born with special needs. They fall off the monkey bars at school and break their arms. They wake up in the middle of the night with a tightening in the chest, or a stiff neck, or a fever of one hundred and four. They stop for pancakes with their mom and sister one bright Sunday morning, and have a stroke right there in the middle of the restaurant.

This belongs to …

And so we parents find ourselves sitting listlessly in hospital cafeterias, spooning chocolate pudding to our lips for comfort, gripping the white hospital bag of our child’s belongings, and wondering why in the hell God would allow such a thing to happen to them.

And to us.

I pat the ‘this belongs to’ bag like it is a loyal dog curled up next to me. After Polly gets out of surgery and recovers, God willing, I will take her things from the bag and put them back on her; her jeans, her pink shirt, her scuffed gym shoes. She’ll once again be mine, belonging to me, and we will toss the white bag in the trash and be on our way.

But the ‘this belongs to me’ bag will stay with me. It’s a reminder that my child isn’t actually mine, but God’s. Placed in my charge, at least for a little while, I am her white plastic bag that holds the precious treasure known as her life.

I will remember that there is someone who loves her too, loves her more, and has a good plan for her. And for me.

In the midst of crazy scary uncertainty in life, when kids get sick, when we parents find ourselves in waiting rooms or hospital cafeterias, I’ve come to learn that God is fine with our kicking and screaming, and fiery questions … “Why her? Why us?” We don’t have to be polite with God, or try to make it seem like our faith makes us strong and ready for these trials. No, we can be honest. We can be raw.

If we are able to get quiet enough to listen, and are patient enough to wait, he will answer.

And this is what he’ll say.

“This belongs to me.”

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.

The Special Needs Soul

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(Join me in welcoming my friend Meredith Cornish who is guest posting today. Read more about Meredith’s awesome family at www.cornishadoptionjourney.com.)

holding glass

The Special Needs Soul

Here’s something to think about… does every person have a soul?

If you are a Christian, you might answer without blinking and not feel the need to think about it for even a moment, however I want to challenge you to think a little further about how your life and surroundings may reflect this.

If you believe that every person has a soul, then in your town/city/region, is there an opportunity for every person in your area to learn about the saving power of Jesus Christ on a regular basis? To be a part of The Church?

What about the blind man? Someone can drive him to church. The deaf man? There are often interpreters if needed. What does the legless man do? Is there a ramp to get in?

What about the person with autism?

Or a developmental delay?

Or sensory processing disorder?

No, really. What about them?

Let me ask the questions again. Does every person have a soul?

Is there an opportunity for every person in your own community (including the individual with special needs) to learn about the saving power of Jesus Christ on a regular basis as a part of The Church?

Jesus spoke of “the least of these” and when we minister to them we minister to Him. (Matthew 25:40). Have we forgotten? Or do we consider the missionaries sent to Eastern Europe, Africa and Caribbean nations “enough” to consider our ministry complete?

Think about it: where do many people focus their efforts when out “on assignment” in the mission field? They immediately flock to the orphanages where children so desperately need to hear the Gospel, receive love, and be hugged, taught, and held.

While there, the child that cannot speak, has no eyes, is in a wheelchair, or the one that shyly follows the others around without being able to fully participate due to disabilities tend to be the children who are the most sought out to minister to. Sure, there’s the feisty little boys that want to wrestle and the girls that want their nails painted, but you’ll notice extra care taken to bring these children— the ones with disabilities— to the forefront to be ministered to alongside their peers. An extra measure of care and joy is often administered along with the ‘treasure’ of time energy that is given to that child as the Gospel is lived out.

What about at home? Where are these children when the same person gets back to their comfortable bed and out of the mosquito ridden tent or unairconditioned hotel room cohabitated by rodents? Those children live down the street. They aren’t called the shy child or the one that doesn’t speak. Instead we label them as autistic, or say the name as developmentally delayed, or intellectually disabled.

Here in the comfort of their own neighborhood, the children are… invisible. As a nation we have put the “burden of care” on the shoulders of the family, and any assistance on the government. Where are their spiritual needs met?

So, I ask again, Does every person have a soul?

Is there an opportunity for every person in your own community to learn about the saving power of Jesus Christ on a regular basis as a part of The Church?

Is a person with special needs somehow of lesser “worth” to the Kingdom of God? Are they made in God’s image (Genesis 1:27)? Were they knit together in their mother’s womb, fearfully and wonderfully made (Psalm 139:14)? Are they a part of the Body of Christ (1 Corinthians 1:21-26)? Did Christ die for them (John 3:16)? Don’t they need to be taught about Jesus too (Matthew 28:19-20)??

Something to think about…

Leading the way, thoughts about sisterhood and Down syndrome

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lead the way

(I’m on vacation this week … So here’s a post from the archives. Enjoy!)

Leading the way, thoughts about sisterhood and Down syndrome

When Polly was born and we learned of her diagnosis of Down syndrome, I grieved the child I expected. I didn’t know much about Down syndrome. My mind quickly flipped to un-flattering images of a child sitting alone at recess, or a mother in her golden years walking slowly through the aisles of Wal-Mart so that her adult daughter, still a child, could keep up. Sadly, it took me a while to let my guard down and fall in love with Polly.

Polly’s older sisters led the way. From the moment they met her, they dripped with love for her. They loved everything about her: “Oh, look at her pudgy little hands! Look at her wispy brown hair. Isn’t she just the cutest little thing ever?” When we later explained to them that Polly had Down syndrome, and that she would need a little extra help doing things, they didn’t bat an eye. “I guess it’s good that God gave her older sisters, huh, mom?” Elaina said.

Indeed.

Three years ago, when Evangeline joined our family, Elaina and Zoya took the lead once again.

Elaina stayed with me for seven weeks in Ukraine until the adoption was finalized. She spent long, Kiev days tickling Evie and helping me take her outside for walks as we waited for the paperwork for the adoption to go through. Once again, I struggled, and my kids led the way.

Snapshot from today:

A toy came home in Polly’s backpack today from Kindergarten. It’s one of those birthday favors. You blow on it and it flings out in front of you. What fun! Polly figured it out right away, and I was thrilled that it wasn’t the one with sound.

A little while later while I was finishing up an email on the computer, I saw Polly bring her new toy into the kitchen. Evie was sitting up on top of the table (one of her new favorite perches in the house), kicking her feet off the edge.

“Look, Evie,” Polly said, moving carefully, climbing up on the bench and then sitting down next to her on the table. “Look, Evie, it blows out,” she said, and then promptly gave a demonstration. I fought the urge to intervene. Evangeline is easily spooked and she is not Polly’s biggest fan. Most people love a happy, in your face five-year-old but Evangeline could do without. But I took a breath and waited to see what happened.

“You see that, Evie. It’s red. It’s pretty. It’s fun.” Polly blew on her toy again. “You like that, Evie. Do you?”

And the most amazing thing happened. Instead of reaching out and grabbing the toy. Instead of crying. Instead of getting the heck out of dodge (read: getting down off the table and away from Polly a.s.a.p.) Evie laughed.

She laughed.

Polly blew her toy again. Evie kept laughing. And for about five minutes they seemed like they were, I don’t know what’s the word?, playing together.

It was magical.

When Polly was born, I worried that she would feel alone but I learned quickly that her sisters would never let that happen. When Evangeline joined our family, I worried, I still worry, that we won’t be able to reach her. Some days she is very far into her own world. And then today, Polly initiated a game with Evie and Evie, just a little, for a few moments, let her in. Polly had Elaina and Zoya to prod her along in her development, and now she is starting to lead the way for Evie.

The magic is now gone. Polly broke her toy because she kept twisting the blow out part. Evie stole all of Polly’s pretzels out of her favorite ice-cream bowl. Polly is running circles around the house yelling, “hey, Evie, leave my snack alone” and Evangeline has climbed off the table. As I type she is eating pretzel bits off my, um, super clean kitchen floor.

But I don’t care. I’ll take the five magical moments when I saw Polly work her sister mojo on Evie.

Sisters are the best therapists in the world.

In My Arms, the privilege of holding my daughter with Down syndrome

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© Amdezigns | Dreamstime Stock Photos & Stock Free Images

© Amdezigns | Dreamstime Stock Photos & Stock Free Images

In My Arms

“Mom!” Polly yells out in her sleep. Her body thrashes to and fro on our Queen sized bed. Her legs kick the covers off. Sweat glistens her forehead.

Her father and two older sisters went out for the night. Her little sister, having been all tuckered out from school and therapy had been asleep for an hour. I bedded Polly in next to me, thinking that my husband would move her when he gets home, and that her slight of breath, up and down, methodical, musical, may inspire me as I grab a few last minutes in the day to write in the quiet house with our fuzzy white dog at my feet.

“Honey, what’s wrong. Tell Mama what’s wrong.”

She doesn’t respond but continues to fuss and squirm on the bed.

“Shh, there there,” I attempt to settle her back into whatever part of her dream cycle she momentarily eludes. This part isn’t new to me, a seasoned mother of four. There have been countless nights in the last twelve years where I’ve brushed wet hair off a forehead, hummed a melody, and lulled a child back to sleep.

But my coaxing doesn’t work.

“What’s wrong, Polly? Does something hurt?”

My daughter nods her head yes, and a shot of electricity zaps through my extremities.

When she was born at 37 weeks, Polly wasn’t breathing. The doctors resuscitated her, and she spent the next three weeks, the first three weeks of her life, in an incubator fighting to breathe and battling a blood infection.

It was weeks before I got to hold her for the first time. By the time I finally felt the weight of her tiny, five-pound being in my arms, her father and I had already been informed of her diagnosis of Down syndrome.

We were robbed.

Her too weak to leave her plastic dome and me, too weak to fathom the curve ball of Down syndrome in my well thought out life. I’ve had moments through the years where my arms ache to hold Polly the baby. What I wouldn’t give to go back and scoop her up, to hell with my fear of the unknown, to hell with sickness, because if I could go back in time, I’d probably have the power to make her well with a slight touch to her forehead.

“Show me where it hurts.”

Polly gestures towards her head.

“Your head? Your head hurts?”

She nods yes again. I pull her up onto my chest. It’s not as easy as it sounds. She’s in first grade. We are planning her seventh birthday party in a few short weeks.

But I pull her to me, because we don’t screw around with headaches in this family.

Three years ago, Polly had a catastrophic stroke which later resulted in the diagnosis of Moyamoya, a disease that thins the arteries in the brain to the point of strokes and seizures. Apparently, she had not been born with one diagnosis (Down syndrome) but two (Moyamoya), and unbeknownst to us, this disastrous disease had been causing mild strokes in her brain throughout her short little life.

Polly underwent two brain surgeries that diminished the chances of recurrent strokes and seizures from 67% to 7%. She rocked the surgeries, actually running circles around me after the second one, just days after her neurosurgeon cut through skin, skull, and brain to create new paths of blood flow for our girl.

“Here, honey, let me see.” I force Polly’s face towards mine and examine her for signs of stroke or seizure. There’s no twitching, or any other signs I know to look for, so the fear of the moment releases into the air around us. I hold her to my heart, like I longed to do after her birth so many times. She settles in my arms and sinks into me. My body is quicksand. I engulf her.

In her short life we’ve danced around death more than I ever expected.

But I don’t take for granted that she is here, tonight, in my arms. I know too many mothers whose arms are empty today. And that knowledge stays with me. My heart is with those mothers. But she’s here. It is a privilege to feel her weight on me, and to know that she is happy, she loves her life, and at least today, is well enough to fill up on her joy, splashing those around her, and continually plugging up my heart, so that I can be filled too.

Polly sighs and falls deeper into sleep.

And I hold here. Here. Like this well into the night.

Because I can.

Gifts from a child with Down syndrome

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© Qtrix | Dreamstime Stock Photos & Stock Free Images

© Qtrix | Dreamstime Stock Photos & Stock Free Images

 

(Join me in welcoming Chris Newlon as our guest blogger today. Thank you Chris for your beautiful post!)

 

 

 

Gifts from a child with Down syndrome

In the first few years of life, our daughter Rebecca had two major operations, a delay-in-proper diagnosed bowel issue, and pneumonia three times. This can set anyone’s development back but was especially difficult for her as she was born with Down syndrome.

As Rebecca struggled through those years and slowly grew stronger, her increased mobility allowed her greater independence in her interactions with others. Where once she was held and carried around to the whims of those bigger than her, she became mobile enough to escape from those arms and pursue her real needs and desires.

Rebecca loved this new independence and began to interact with others in a very unique way. Whether it was a friend of mine, a sibling or an occasional stranger, she insisted on giving “something” to them. She would hold out her hand as if she had an object in her tiny fingers and waited until the person held out their hand to accept her “gift.” Of course nothing was there to the naked eye but everyone accepted her gesture with a quiet smile. Strangers were often hesitant at first but eventually played along. Over the years I realized she was truly “gifting” a part of herself to others.

For family and friends who knew Rebecca, this gesture was a good thing, even if we didn’t understand what she was doing. Teenaged friends of her siblings were most often the recipients of these gifts. The energy released was almost palpable, and they knew it. More than once they came back into the house to get “gifted.”

They took the “gift,” curled their fingers around the imaginary object now in their palms and held it tight. This was often followed by pressing their palms to their hearts and smiling that deep, teary eyed smile you smile when you’ve been reached by something you can only feel. But always, they looked her in the eyes with love, acceptance and for a brief moment, peace between souls. They knew she had given them a part of her spirit to carry close, to comfort the heart and bring a bit of joy to their day.

Since Rebecca’s speech has become more distinct and frequent, she has replaced this gesture with words of comfort.  “How was your day?” to her dad as soon as he walks through the door at night. “Let’s call John (or Joe),“ when she thinks he needs to hear her voice in the middle of the day. “You ok?” to all of us if looking a bit pensive. I love hearing the words that I always knew were in her head. I love to see others’ reactions to the deep thoughts and compassion that come from this young heart. This language acquisition was a long time coming after years of hard work on her part, and she continues to hone these skills daily.

But every once in a while, I wish she would offer me one more of her precious gifts that had no words, and required me to listen with my heart.

 

Chris

Chris Newlon lives in Northern Illinois and has been married to Shawn for 31 years. She’s mom to Sarah (& her husband Jeremiah), Joe, John, Jessica, and Rebecca who has Down syndrome, is nine years old and in the third grade. A retired occupational therapist since the birth of her eldest, Chris volunteers at GiGi’s Playhouse McHenry County, is a National Association for Down Syndrome Speaker, and has been involved in lots of school activities over the years.

She stands tall, not trying to fix the child I adopted

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She stands tall; not trying to fix the child I adopted

Stands

When we adopted Evangeline from Ukraine in 2009, she hunched. She cowered. She chose to spend her time hidden in little pockets of the house, behind the sofa, under the comforter on her bed.

How would I bring her out of her shell? How would I get her to not only make eye contact with me, but to trust me and let love in after two and a half years of a myriad of caregivers, confined to a crib a lot of the time, and no real person in her life to call her own?

I resolved to fix her. My love would break through.

Oh, I tried. And failed. And tried some more.

As her mom, I started to hunch too.

Guess what? I couldn’t do it.

I could not fix my adopted daughter. There were too many things at play: her diagnosis of Down syndrome, abandonment, autistic tendencies, fear, distrust.

But with time, fixing Evangeline fell by the wayside. God started to show me that I didn’t need to ‘fix’ Evangeline. That wasn’t my role.

She did not require fixing.

He pointed out to me through pools of tears and feelings of failure as her mother that I simply needed to love her. Not fix her.

Once that thought occurred to me, the pressure eased.

Sure, I still try to help Evangeline break out of her shell. I drive her to therapy. I read to her, do hand over hand with her to complete a puzzle, teach her how to use pictures to communicate since she is non-verbal, and encourage her to look people in the eye, to give high fives, to realize her surroundings and engage.

But I am not desperate to fix her anymore.

Would I like to hear her voice? Absolutely.

But am I content being her mom, and loving her for who she is. A resounding yes.

Today I spent the morning in Evie’s classroom for observation.

I saw a little girl happy to be at school.

I saw a little girl who still doesn’t really acknowledge those around her. And I’d be lying if I didn’t say that my heart ached to see that she was one of the lower functioning students in her special needs classroom.

But I also saw her standing tall. Confident in herself. More willing to look people in the eye. More open to returning smiles and allowing people into her world.

She watched me gather my things to leave for home. And something amazing happened to this Mama who all along simply craved her love, and let that drive stoke the fire to try to fix her to our relational detriment.

She walked over to me, and raised her hands for me to take her. I picked her up, and she wrapped herself around me tight. A smile lit her face.

She did not want to be put down. She did not want me to go. She knew I was her mother.

And that she belongs with me.

I cuddled her for a while, whispered love and peace into her soft little ear.

And when I put her down we stood, my daughter and I, looking at one another …

Both standing tall.

I’m afraid of going on vacation with my kids who have special needs …

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© Dstamatelatos | Dreamstime Stock Photos & Stock Free Images

© Dstamatelatos | Dreamstime Stock Photos & Stock Free Images

I’m afraid of going on vacation with my kids who have special needs …

But we are doing it anyway.

In a couple of weeks, we are taking the kids to Maryland for their spring break from school.

I’m afraid.

It is a 14 hour drive. Four kids, one old, plain Dodge Caravan that is starting to fall apart, and two parents who no doubt will be white knuckling it the whole trip.

A friend of my husband’s is giving us his house for a week on the ocean. Nice, right?

So why am I so afraid?

Vacationing with kids with special needs

Two of my daughters have Down syndrome. Polly doesn’t like loud noises. Evangeline struggles in restaurants. Both girls have aversions to certain food textures so eating out is tricky. Polly is a routine girl. If Evangeline is in a crowd too long, she will go into sensory overload which includes rocking violently back and forth, crying, and possibly hitting her head on any hard surface she can find.

Honestly? It’s much easier to just stay home; a place that is familiar to my girls. A place where the routine is down pat, their needs are met, and where I can attempt to control their surroundings.

But that’s no way to live

I have to fight the urge to keep my little girls close and box ourselves into a predictable little world.

Kennedy said ‘Conformity is the jailer of freedom and the enemy of growth.’

The only way for our family to enjoy outings and vacations and trips to restaurants is to well, do them. It’s not fun at first. It’s terribly difficult work. We go out to eat, and by the time everyone is putting on coats to leave I’m in an awful sweat. My hands are clammy, one of my four kids is probably crying while the other one is ticked about something inconsequential.

Ugh.

But we do it anyway.

Because all six of us: My husband Sergei, our daughter Elaina, Zoya, Polly, and Evangeline, and I all deserve full lives.

Not only do we deserve bigger, experienced lives, but it is the only way for us to grow, and to become better versions of ourselves.

Eventually, Evangeline will realize that restaurants aren’t scary places. I can buy some headphones for Polly to wear if we go someplace loud. If Evie gets overwhelmed I can take her outside for a walk to settle down. I can hold her in a tight embrace and point out all the things of the world we get to see by putting ourselves out there just a little bit.

Stepping out of our comfort zones is a good choice.

So we are going on vacation

So we go. We’ll pack up the car. Bring toys, games, and books for all the kids. Sergei will load his iPod with family favorite tunes, and I will take deep breaths, and ask God for safety, and light, and fun for all as we head into a new horizon.

This pep talk is helping me get into the right frame of mind … But I’m still not ready to talk about the 14 hour car ride.

Baby steps, right?

Have you gone on vacation with your kids with special needs? Any tips? I’m all ears.

Raising kids with special needs, one moment at a time

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photo by Christine Kay Photography

photo by Christine Kay Photography

Raising kids with special needs, one moment at a time

This is my task at hand, to spend time with Polly. To create enough space in my thoughts to be fully present and make contact with her heart. Raising kids with special needs, I can’t just take one day at a time — I need to take one moment at a time.

Read my full article about connecting with my kids who have special needs in Thriving Family Magazine …