Messages from Moms: Ellen Stumbo {part 1}

Oh, I am so excited to introduce our next guest to you! Please meet Ellen Stumbo

Ellen and I were connected by a mutual friend, Jolene Philo. Ellen guest blogs for Jolene, and also shares her wisdom and insight on her own blog. Please click on over there soon and enjoy the enrichment and encouragement she offers.

Ellen and her husband have three darling daughters. In addition to being a wife and mom, Ellen is an accomplished writer whose articles have been featured in publications such as Focus on the Family’s Thriving Family Magazine and at SpecialNeeds.com. She has a knack for discovering beauty in brokenness.

Today, Ellen shares a bit about coming to terms with her second daughter’s diagnosis of Down Syndrome,and how her daughter changed her life.

Three little bright-eyed girls hold my mother’s heart. They are gifts, treasured and precious lives entrusted to me. They love their bows and dresses, pinks and purples, dolls and castles. They play together, giggle, and hug. Yet, each of them is unique. If you were to come to my house, you would discover just how different they are from each other. Somehow, they fit together so well; they are perfect for each other; they are sisters.

Ellie is my almost-seven year old. She is my drama queen and creativeness pours out of her easily. She is advanced for her age at school, and next year she will most likely be joining that talented and gifted program.  Then there is Nina, my other six-year-old. She joined our family through international adoption before she turned 4 years old. At the time, her development was that of an infant, but with the love and support of a family she is now an average kindergartener and we are astonished at how much she has accomplished in life. Due to her background, Nina struggles with some mental health issues, some we hope she will overcome as she continues to grow, and some that will be a part of her life. Nina also has Cerebral Palsy and she faces the challenges that come from her disability. And there is my rascal, Nichole. She is four years old and she has Down syndrome. She is the reason we chose to adopt Nina. She changed our hearts forever, teaching us about what really matters in life and re-establishing our priorities.

Dealing with Nichole’s diagnosis at her birth was not easy, it brought on some of the darkest moments in my life. I grieved for the baby I never had, and ached for the dreams  that disappeared like a puff of smoke. I cried constantly and felt guilty for the sadness I felt. I did not dare share with anyone about my feelings because I was a Christian, and a pastor’s wife, and everyone expected me to be strong. “God chose you for a reason,” people would say. I resented their words. Why, why would he chose me?

In desperate moments I would talk to God:

Why? Why did you do this to me? Why would you give me a broken baby? I have served you faithfully so why would you do this to me? I gave you my life and I will walk this road because you have chosen this for me, but I don’t like it, I don’t want it!

Slowly and faithfully God began to work in my heart. Nichole challenged what I viewed as perfect, worthy, important, and valuable in life. I had received her as a broken baby, only to quickly recognize that I was the broken one. The treasures I have discovered along the way are not found in strength, performance, eloquence, character or confidence. They are found in brokenness, where beauty is found unexpectedly as a result of God’s love and compassion transforming my life

I cannot imagine life without Nichole, and I now consider Down syndrome to be a blessing. There is nothing about her that I would change, absolutely nothing.

In the next post, Ellen will describe how her church became a family who cared for the Stumbo family during a season of grief.

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Messages from Moms: Jolene Philo

Please meet my friend, Jolene Philo.
 
 
Jolene and I met several years ago at a conference in Iowa. Since then, we’ve chatted on the phone, taught a class together and attended conferences together. (all the while wondering how much fun we would have had if we’d worked at the same school when we were both teaching full time…)
 
Jolene is an incredible teacher, having taught kids of all ability levels in a public school. She also has worked in ministry, and is currently enjoying a new career as an author. You MUST read her books, A Different Dream for My Child and Different Dream Parenting. Jolene is married to her husband, Hiram, and has two adult children, Allen and Ann (and two children-in-law!)
Today, Jolene reflects on her own experiences as a mom raising a child with a chronic illness, and offers encouragement and wisdom in the process…
 
Katie Wetherbee: Tell me a little bit about your experiences as a mom to a child with a chronic illness.
Jolene Philo: Our son was born in 1982 with a life-threatening birth defect that required immediate surgery on his esophagus so he could live. During the next five years he had seven surgeries and hundreds of procedures and tests to get his esophagus to function correctly. Another major surgery at age 15 completed the process.

During adolescence, he began to exhibit some impulsive and self-destructive behaviors. At age 18, he began a pattern of running from stressful situations that lasted 8 years. Finally, he realized he could not stop the behavior himself and asked us to help him seek mental health treatment. Within one week, he was diagnosed with post-traumatic stress disorder (PTSD) caused by early invasive medical procedures. After a week of outpatient treatment at a cutting- edge outpatient clinic in late 2008, his life was totally changed.   

He’s now married, has a excellent job. He and his wife are expecting their first child in September.
 
KW: What did your church family do that was helpful to you as you raised Allen (and Ann!)
JP: When Allen was constantly in and out of the hospital that first year, our pastor and his wife did a Bible study with us to answer our questions about why God would allow a little baby to suffer so much. I can’t remember much about the theological truths learned, though my husband says we studied the book of James. What I do remember is a family that gave up a night a week to meet with us and share our journey. We moved when Allen was 3, and our new church family was supportive a year later when he had another surgery. He was constantly on the prayer chain, people visited the hospital. One family familiar with chronic illness requiring surgeries brought a picnic. We put Allen in a wagon and went outside to the courtyard to eat with us. That moment of “normalcy” was precious.
 
KW: What is it like to transition from being the mom of a child with an illness to having ADULT children? How did your experiences with disability shape that experience?
 

JP: Allowing children to leave the nest knowing they will sometimes fall is hard for parents, whether or not special needs are involved. The addition of special needs makes the experience more intense. Hiram was better than I at trusting God would watch over our son. I constantly worried about whether he had medicine, was sleeping with the head of his bed elevated, making impulsive decisions that could ruin his life.

 Thankfully, when Allen was a baby and his grip on life was tenuous, God made clear that he, not I, was in control of our son’s life. When worries threatened to overtake me, that truth was a rock upon which I could stand.
 
KW: Any advice for churches as they reach out to parents of kids with disabilities?

I encourage them to use the verses in James 2:15-16 as a guide: If a brother or sister is poorly clothed and lacking in daily food, and one of you says to them, “Go in peace, be warmed and filled,” without giving them the things needed for the body, what good is that?

These parents are so needy. They’re often exhausted, discouraged, afraid, financially strapped because of expensive treatment for their children, racked by guilt because they can’t meet their kid’s needs, and isolated. Churches need to first give them the practical, supporting love of Christ. Parents are too tired to comprehend deep theological issues, as I was during that long ago Bible study, but they appreciate someone coming along to help bear the load. If churches follow that maxim, they can trust God to work in the hearts of family members. Eventually, the truth churches are living will chip away at unbelief and doubt and unbelievers will come to faith.

For more information about Jolene and her work, please have a look at her website!

Pick a Partner: What are the rules?

Last week, we talked about what teachers can do–before the students even set foot in classroom–to make group work manageable for all students. Today, we’ll talk about the importance of including students in the planning as well, and why this should be part of the “big picture.”

Have you ever watched the reality show  “The Apprentice?” On this program, groups of entrepreneurs or celebrities work together on tasks in the hopes of eventually being named Donald Trump’s “apprentice.” As with most reality shows, it’s chock-full of drama, stemming mainly from the friction between team members…the group dynamics frequently ignite a firestorm of arguments.

The problem, it seems, is that the groups have very little time to talk about how they are going to work together. They’re immediately thrust into managing tasks; getting to know one another and establishing “norms” for the group are considered irrelevant. The result? Misunderstandings, hurt feelings, errors, and incomplete work.

My advice, then, to teachers who are planning group activities: “Be ye not so rushed.” The time you invest in helping ALL kids learn how to work together will pay huge dividends, not only in students academic achievement, but in their social-emotional development as well. And, if you’re teaching in the church setting, you’re helping kids to understand more fully how to be the Body of Christ.

Here are some steps for helping students work together…

Create rules Before we allow children in the cafeteria or on the playground, we give them a set of expectations  to keep them safe and to help them manage their interactions. The same logic applies to group work. I’ve quoted my colleague, Sheri Halagan many times on this blog, but her words are worth repeating: “Kids don’t know as much as we THINK they know about how to behave.” We need to remember, too, that some students with hidden disabilities struggle with social skills…and thrive on structure and rules. Before starting group work, gather the class together and facilitate a discussion about rules that should govern the tasks and interactions.

Make “Sense” of the Rules Many times, students can create appropriate rules, like “Be kind” and “Do your best job,” because they have heard the phrases before. However, we need to be certain they truly understand what the rules mean and why they are important. Jolene Philo, an author and veteran teacher, developed a method of helping students understand rules in a multi-sensory way. Instead of stopping at “Be Kind,” Jolene would ask her students, “What does being kind LOOK like? What does it SOUND like? What does it FEEL like.” She then recorded their responses in a chart to visually reinforce their discussion. This allowed for a deeper reflection about the need for these boundaries. (Download a copy of Jolene’s chart here: Look/Sound/Feel Chart)

Reinforce the Rules As teachers and volunteers who work with children and teens, we’re constantly reviewing and re-teaching. Anything we teach…from subtraction to science to Scripture must be reinforced so that it can be remembered. That’s just how students learn. In the same way, we need to review the social curriculum for students so they can internalize how to interact with each other in a positive and productive way. Responsive Classroom Consultant Margaret Berry Wilson writes,

It is important to keep discussing and practicing the rules all year long. Students cannot possibly learn all they need to about how to live and behave as a community during the first weeks of school. Time spent together deepens their understanding of how to truly care for each other. Also, keeping the rules alive and ever-present in children’s minds gives you the ability to ask “What do our rules say about . . . ?” when challenging situations arise. (full article here)

These comments readily apply not only to the classroom in school, but to church as well. In both settings, students need consistent, kind reminders about the rules that govern positive teamwork.

Your rule-based friend…

~Katie

Next: Assigning roles that make groups positive and productive.