Messages from Moms: Gillian Marchenko

Happy Monday, everyone!
You are in for a treat today…I’m going to introduce you to another fabulous lady who loves God and loves her kids…and has much wisdom to share with all of us.

I met Gillian Marchenko through our mutual friend, Shannon Dingle. I instantly felt a connection to Gillian…we both have daughters who share a rare diagnosis. I have thoroughly enjoyed getting to know Gillian through her writing and her always-honest facebook posts (which have me laughing and crying in equal measure!)

Today, Gillian answers a couple of questions about faith, family, and special needs:

Tell me a little bit about your children.

My husband Sergei and I parent four daughters: Elaina (11), Zoya (10), Polly (6), and Evangeline (5). Elaina is a voracious reader. Zoya likes science and math. Polly thinks she dances better than Angelina Ballerina, and Evangeline loves the swings at the park. Our kids are best friends. They make forts in the living room, and play Barbies. They all still try to cram into the bathtub before I catch them. “We fit, Mom. See, we all fit.”

 How does having children with special needs affect your family?

 Polly and Evangeline have Down syndrome. (Evangeline was adopted from Ukraine in 2009.)

Family life is busy: homework, laundry, therapy, fun Saturdays, work, church, walking the dog. I eat disability. It is clothing I wear. It wafts through my lungs every day, and yet, I forget about it because I am busy living. To us, Polly and Evangeline aren’t disabled. They are simply Polly and Evangeline.

But then I take a step back.

Not every family has weekly therapy and doctor appointments. Most five-year-olds are potty-trained. Families probably don’t plan Saturday activities around crowds, and noise, and chaos. We face these issues because our family is affected by special needs.

Having children with special needs affects our family positively too. Our children are raised with a sensitivity to those around them. Special needs slows down our lives. We celebrate everything at our house. A good grade on a test is a call to cheer. A kid meets a new therapy goal, you can be sure our gang is stoked. And we meet all kinds of wonderful people we probably, to be honest, wouldn’t have made time fore if it weren’t for Polly and Evangeline.

How has it affected your faith?

I want to be careful answering this question. It is easy to provide platitudes about the fearless mother and faithful child of God who clung to Jesus when she had a child with Down syndrome. A lot of people want to hear that from a pastor’s wife and former missionary. They are looking for encouragement. People of faith want to read about others who have persevered, fought the good fight, stayed true to their belief.

 I would have liked to behave better after Polly’s birth, to smile and pray and trust God in all things like the Bible teaches.  I would have liked to have remembered that children are a gift from God.  It’s what people in my circles would expect from me.  But in my humanity and grief, it didn’t happen. 

The truth is my faith nearly buckled with my daughter’s birth. I stopped praying. I struggled to love my family. My heart was pulverized like a piece of meat. It was six months of straight sucker punches to the gut.

One of the things I love about God is that he doesn’t let me get away with something for too long.  I am a toddler and he is the loving parent, pulling me back into the playpen at the exact time I’m about to fall over the edge.  My broken heart started to heal through the love of my child, and through a reconciliation with God regarding the purpose of my life.

Two of the biggest lessons God is teaching me as a parent to children with special needs are 1) life isn’t easy, and 2) God wants us to draw near to him.

Psalm 84:3 helps rebuild my heart.

Even the sparrow has found a home, and the swallow a nest for herself, where she may have her young— a place near your altar, LORD Almighty, my King and my God.”

Sparrows are friendly birds.  If a sparrow were on a housetop, it would be surrounded by half a dozen of its kind.  It is the most unusual thing in the world for a sparrow to sit alone.  It only happens when the bird’s mate has been killed or its nest and young have been destroyed.  In Psalm 84 the broken sparrow finds a home near God.  As I thought more about the sparrow and the swallow raising their young at a place near the altar of God, I kept thinking that God wanted me to gather up my family and move closer to him. 

That’s what I try to do. Some days I am successful. Other days, I’m not.

Gillian Marchenko is a Christian, wife, mother, writer, speaker, and advocate for individuals with special needs. She writes and speaks about parenting kids with Down syndrome, faith, imperfection, and adoption. Gillian’s work has appeared in MomSense Magazine, EFCA TODAY, Four Cornered Universe, CHICAGO PARENT, Story Bleed, and CHICAGO SPECIAL PARENT. Check out Gillian’s website at www.gillianmarchenko.com or find her at www.facebook.com/GillianMarchenkoPage or on Twitter, @GillianMarchenk.

Additional note from Katie: Please visit Gillian’s facebook page and click “Like;” she has written a book and is hoping to have it published…we want that to happen! By clicking “like,” you’ll let publishers know you’d like to read her book! 🙂

Team WORK: Transitioning from School to the Workplace

Photo courtesy CEVEC

Last week I attended a career assessment meeting with a client at the Cuyahoga East Vocational Education Consortium.(CEVEC). This center is designed to provide “vocational and work training to high school aged students with disabilities.” CEVEC is now housed in a recently renovated building, and it positively  buzzes with productivity.

The team assembled in a quiet, comfortable conference room near the main office. Tim Velotta, Career Assessment Specialist, reviewed the results of the testing and educated the group about the next steps in the process. He also explained some of the differences between services and supports at high school and the workplace. Students who are identified with a disability that affects education have Individualized Education Plans, which, as TIm described are “designed to help students succeed.” However, when students transition from public school services to the “real world,” they will receive accommodations–not services– under the Americans with Disabilities Act. At this point, Tim said, “Success is no longer guaranteed.”

This is a scary, and sometimes difficult transition for parents (and for students, too!). For many parents, this presents a touch point of grief; the realization that the child is not following the same college and career path as his/her peers hurts. Even if the parents feel that they have accepted their child’s disability, these kinds of transitions often involve “re-grieving.”

In addition, there are questions! Parents and students want to know what the day will be like, how goals will be accomplished and what the expected outcomes might be. Finally, students and parents might also be excited about the possibilities and experiences ahead, as well as the new levels of independence and fresh experiences in the offing.

In reviewing the variety of job opportunities, Tim described how he and his team evaluate students for job training. The three main criteria assessed are work speed, work accuracy, and level of independence.  In addition, the team assesses  students’ employability skills…the “soft skills” that are necessary for successful employment. These include seeking help when needed, ability to recognize and correct mistakes, flexibility and respect for self and others. Once the assessment is complete, students are placed into a job training program that meets their individual needs. The exciting part? The training they receive involves tasks that directly benefit the community!

What lessons can the Church learn from this process? How can we support families in this unique transition to adulthood?

  • Recognize that this transition might evoke sadness or loss in parents and students. Be willing to affirm those feelings and listen without judgment.
  • Celebrate the transition with the family. If the parents and student are excited about the possibilities, by all means, send a card or make a phone call to give your best wishes. Taking a step toward adulthood is a big deal! Follow the family’s lead and rejoice with them in this new opportunity.
  • Offer opportunities for service at church. It’s important to think beyond the service opportunities we usually assign to teens. Not every student will be able to play the guitar, volunteer in the nursery, or go on a mission trip…and that’s okay. It’s important for us to consider the gifts of the students in our churches and provide opportunities for them to make a contribution to the Body using those gifts. (this is true for both typically developing students as well as students affected by disabilities!)
  • Emphasize the “soft skills.” Reinforcing students’ ability to respect authority, follow directions and make good choices not only builds their employability…it  builds the Church.  When we teach these qualities at church, we can emphasize the greater purpose in demonstrating these qualities, and give our students the knowledge that they can glorify God in the workplace through their attitudes and behavior.
  • Consider collaborating with a center like CEVEC. During my visit at the center, I asked Tim Velotta if students can be placed in jobs at churches. “Absolutely!” he enthused. He listed several “go-to” community organizations that have provided support and training to CEVEC students. If your church feels led, explore this opportunity to reach out to the community.
  • Be a safe haven. Transitioning to the work world can be scary. Students need to know that their church stands with them, ready to commisserate about the rough days and celebrate the successful ones…because that’s what families do.

Working together~
Katie

Weekly Wrap + Five Facts for Friday {3-2-12}

The weather report indicates that March will, indeed, come in like a lion in many parts of the country. The weather, though, is not the only “roaring” in the ears of our community…it’s been a hard week. As you know, there was a shooting in a nearby school district, which resulted in death, injury, and so much grief. In addition, a family in another nearby community lost a daughter in an accident just last night.

My human noggin just can’t understand the reason for all of this suffering. Please pray for these families. Chardon Superintendent Joe Bergant told parents this week, “Hug your kids,” and then said, “Kids, hug your parents.”
That sounds like a really good plan to me.

In other news, our Key team has been really busy…we’re doing some curriculum modifications for a publisher, working on presentations for several conferences, and consulting with churches across the US as they seek to include kids and families affected by disabilities. This week, we worked with churches in Texas, Kentucky, Ohio and Florida! I’m looking forward to sharing some news about a great site visit I had to a career center today; there are some great applications for churches and communities. More on that next week!

And, finally, our traditional Friday fun:

Five Facts for Friday

1. Heard in our house during the Oscars…Annie: “You’re going to be on this show some day, Bill. And you’re going to WIN.”
2. I tried some of the Cirque De Soleil moves that they did on the Academy Awards. It didn’t end well, and I don’t want to discuss it.
3. Classic TV: Davy Jones’ appearance on the Brady Bunch.
4. Chardon students’ response to this week’s tragedy shows remarkable solidarity and resilience.
5. Happy Birthday, Dr. Seuss! Favorite story: The Cat in the Hat Comes Back. Yours?

Have a great weekend~
Katie