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gillian marchenko

Author and Speaker

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10 things teachers should know about Down syndrome

08.15.17

about Down syndrome

10 things teachers should know about Down syndrome

It’s that time of year again. Backpacks are bought. New tennis shoes are donned. Back to school. It’s also time to educate our teachers on what they should know about Down syndrome.

I have two girls with Down syndrome. Polly is going into 2nd grade, fully included with an aid, and Evangeline is going into 1st grade in a special education school.

When a parent asks me how to find a good school for their child with Down syndrome, after having been down the education road now for five years, my answer is this:

It depends on the TEACHER.

It all comes down to the teacher in the classroom. Teachers can make or break the experience for the child, for the family, for the classroom, and for the whole school, especially when it comes to children with Down syndrome.

So here’s my list of 10 things teachers should know about Down syndrome:

1. Know the definition of Down syndrome.

Here’s a technical definition for adults: Down syndrome is a genetic condition. There are *three* types of Down syndrome: trisomy 21 (nondisjunction) accounts for 95% of cases (what my daughters have), translocation accounts for about 4% and mosaicism accounts for about 1%.

People with Trisomy 21 have 47 Chromosomes instead of 46 in each cell. This is because of an error in cell division called nondisjunction. At some point, a pair of 21st chromosomes in either the sperm or the egg fails to separate. As the embryo develops, an extra chromosome is copied in every cell of the body. (Read on to find out how to explain Down syndrome to kids …)

2. Use people first language.

People first language is simply putting the person before the disability in speech. Don’t say the Down syndrome girl. Use the child’s name, and if needed in the conversation, add that she has Down syndrome. (e.i. Polly, who happens to have Down syndrome.) Also, the correct term is Down syndrome. Not Down’s syndrome. A child does not have Downs. Terminology is important, and often mistaken.

3. Pay attention to how you treat the child.

Remember, you set the tone. Please treat your student with Down syndrome like the other kids in class. I’ve been in classrooms where the child with Down syndrome is babied, or considered the class project. Don’t give special treatment, and don’t ignore him or her because it is easier. Your other students are watching, and they will act like you.

4. Explain Down syndrome to your students, and to the school.

In an inclusive setting, teachers should talk to their class and explain Down syndrome. At the beginning of each school year, I visit Polly’s class to discuss Down syndrome. Invite the parent to come help! Here’s a post that will tell you exactly how to teach kids about Down syndrome.

5. Find out about health and safety concerns.

An added chromosome can bring about health and safety concerns. Be sure to review your student’s medical records. Find out if she has any constraints for recess or gym, and check with the parents about safety issues.

6. Identify how the child learns.

First and foremost, children with Down syndrome LEARN! But all children learn differently. Your job is to figure out how your student learns, and then work with other professionals in your school to modify the classwork to give him every chance to succeed.

My kids are visual learners, and it is difficult for them to stay on task. So their teachers break things down to small, step by step assignments, and reinforce with visual and tactile cues. Not sure how/what to do? RESEARCH. Ask the parents. Check with special education teachers.

7. Partner with the child’s parents.

No one knows your student better than her parents. Network and communicate with them often. Don’t wait for an IEP meeting that happens twice a year. I have a communication journal that I send back and forth with my kids’ teachers daily.

8. Read your student’s IEP often.

I seriously think that some teachers just skim students’ IEPs once and assume the school therapists will help the student achieve her goals. My recommendation? Read the IEP often. Look for ways to incorporate your student’s goals in the everyday life of the class.

9. Don’t assume your student can’t do something.

Always start with the idea that he or she can do anything other students do. Just realize you may have to break the task down or teach it in a different way. Model the task for your student, or maybe pair him up with a buddy who can help. Peer interaction will be a huge motivator for a child with Down syndrome.

10.  Realize that you play a big role in your student’s success!

Create a wonderful environment for your student. Use his gifts and talents and interests to motivate him in his work and give lots of positive feedback and encouragement. What a privilege it is to play such a vital role in your student’s life.

HERE’S AN ADDED BONUS TO THIS POST:

CLICK HERE: 10 things teachers should know about Down syndrome  AND DOWNLOAD THE PDF. You have permission to print it out and give it to the teachers in your life. I ask that you link back to me, or email me for permission to reprint for larger groups at gillianmarchenko@gmail.com. 

Parents, do you agree with my list? What would you add? Teachers, any other suggestions? Have a great year everyone!

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The gospel and depression

05.11.17

The Gospel and depression

The gospel and depression

It is enough: now, O Lord, take away my life, for I am no better than my fathers. (1 Kings: 19:4 )

“Will you speak with a visitor named Jean?” my husband asks at church. “I think she’s depressed.”

I’m confused. How can he suspect depression after one conversation?

Of course, he can’t know for sure.

Soap box

Mental illness is difficult to diagnose. Careful screening and training is a must. One may assert depression for other reasons; a couple of  down days, a lack of motivation towards faith and life in general, or sometimes a serious excuse for a disinterest in a close relationship with Christ or all out rejection of the gospel.

I sound harsh. Who am I to understand people’s hearts and lives (I don’t always understand mine)? My job is not to pontificate that some people don’t have depression. Situations exists (difficult and stressful times in one’s life) that lead to depression. It’s the real deal. I don’t own a corner on this topic and probably shouldn’t write about it. But we live in a culture (both in and out of the church) that fosters an indifferent attitude towards depression. And frankly, it weakens the legitimacy of mental illness and offends the battle 1 in 5 adults in the U.S. face.

Depression is a bona-fide illness, one that is similar to a person who takes insulin for diabetes or breaks her leg.

Back to Jean

My husband is acquainted with outward indicators of depression because of me. I’ve had major depressive disorder for over a decade, and possibly, my whole life. We can’t know if Jean has depression. But regardless, she is hurting. She needs help.

I locate her after the service and we find a place to talk.

“How am I supposed to live?” she asks. Her jaw clenches and dull, charcoal eyes stare through me. “I pray. I read scripture.” She points to her chest. “Nothing breaks through.”

Jean is not the only one who asks this question. It’s in my veins every second, pumping doubt and fear to my heart and mind like blood.

Lord, how am I supposed to live?

The gospel and depression

I speak about depression. I write books. But shame exists deep within. Part of the reason (outside of the battle of the mind) is because the stigma is alive in churches. “You are less spiritual than others,’ my illness whispers in my ear. “You can’t be a Christian and depressed,” I believe the enemy chimes in.

And so I, and others like me, tend to cower in the back rows of churches, in the corner pews, or at home on Sunday mornings instead of worshiping with the family of God.

The truth? We know that the stigma is wrong, but we tend to believe it anyway. God will deliver us if we ‘do’ more.

The theology of grace morphs into works. “I should do more. Why can’t I get myself together?”

What do people think about the gospel and depression? Sarah Collins and Jayne Haynes take the issue of one’s inability to be a Christian and depressed head on in their book, Dealing with Depression: Trusting God through the Dark Times as noted in this blog post from the Gospel Coalition. Collins and Haynes begin by “reassuring sufferers that being a Christian and being depressed are not mutually exclusive…” They way I read the interview, the authors note the vital role of the spiritual life in depression (I will add, it IS important). But they subscribe to the belief that although faith is a component of health, it’s not about Christians with mental illness praying harder, repenting of sin, trusting God more, and getting their spiritual act together.

It’s crazy, really (bad choice of words), that people are still uneducated, biased, quiet, and judgmental. Close your eyes, open the Bible and point. Chances are you don’t have to read far to come across a person with a distraught soul. King David, Jonah, Job, Hannah, Paul. God used these people in big ways despite their afflictions. Since when did being ‘together and healthy” become signs of faith? What scripture backs up the theology?

The gospel and depression as seen in Elijah

In 1 Kings, I read about the prophet Elijah’s lowest point. “It is enough: now, O Lord, take away my life, for I am no better than my fathers.” (Chapter 19:4 )

Is it terrible that it gives me comfort to know that someone in the Bible says this kind of stuff to God?

God’s response is gracious. Elijah falls asleep and an angel of the Lord awakens him twice, providing sustenance through food and water. God comes close. He nourishes him. He sits with him.

Pay attention to the story. What an amazing correlation to important elements of the gospel. ‘I am no better than my fathers,’ (realization of sin), God responds with grace (forgiveness), an Angel of the Lord (many commentators  believe that this is Jesus) provides him food and water (communion with God through the bread and the cup).

Elijah asks God to kill him. God saves him instead. He sits with him. Jesus has conquered death. He does not leave him or forsake him (Hebrews 13:5).

People often ask me how to help others with depression

I’m still learning, but here’s what might help:

  • Sit with them in the pain.
  • Don’t fix, act, or judge.
  • Don’t appease yourself by offering trite Bible verses and walking away.
  • Nourish them with your presence (either near or far depending on how they are doing).
  • Come close to them like God did with Elijah (a ‘stick-with-themness’).
  • When appropriate (maybe when they are coming out of an episode. Maybe not directly. Pray about that one!), point them back to Christ.

Every pain and affliction we experience comes back to the gospel. God is the great physician (Psalm 103:3). He promises that we are and will be whole in the presence of our Savior because of his work on the cross. Speak the truth in word and deed to your hurting friend, but always, ALWAYS from a place of support, love, and understanding that it is not up to them to ‘heal thy self.’

Jean

“I’m sorry, Jean. Your pain is real. I can’t do much, but can I sit with you for a while?”

Jean wipes her eyes and nods.

How are Jean and I supposed to live? Remember that God came close through Christ and that through the gospel, he’s not going anywhere. Acknowledge that scripture is full of hurting, sick, imperfect people trying to serve a perfect Savior. Our healing is not up to us. God has a purpose with our lives. We are not a waste.

“Even the apostle Paul said that in weakness we discover the glory, power, and grace of God.” – Scott Sauls.

Church, believers, I urge you. Educate yourselves. Don’t dismiss. Sit with those among you with mental illness in word and deed. Find them at the back of the church or hidden in pews. Reach out to them at home on a Sunday morning. Affirm God’s love and presence in their lives by being a person who doesn’t judge or walk away. Search the scriptures and ask God to confirm the theology of weakness (illness) and grace.

The theology of illness and grace is still a mystery to me. But I sat with Jean that Sunday morning, certain that Jesus was sitting with us, too.

1

Special needs and guilt management

04.06.17

Guilt management and special needs

Special needs and guilt management

Guilt management and special needs – hard, hard, hard, hard, hard topic. For most parents, guilt is a big part of their lives anyway. But for a lot of moms and dads who have children with special needs, it can be immobilizing.

I’m one of those parents.

I have two kids with Down syndrome and I struggle with guilt all the time. Am I doing enough for them? Are there other therapies I don’t know about? Why does that mom seem to be able to handle everything and I can’t? Why won’t my kid potty train? What is this doing to my marriage? What about my other kids?

How can one manage with this?

I’m not a guilt management expert.

No diploma here. I didn’t take a weekend class at a hotel. I surely don’t have it all together. But I care about guilt because it is something I battle daily. Guilt can be one of the fastest fires in our lives. It will burn us out fast.

So, what can we learn about guilt management that can help?

  1. Admit your guilt. A lot of us try to bury and hide that emotion. Why? Is it because we care about what others think? Um, yes. Is it because if we give in to our guilt we will lose it (as in, lose it personally, like lose life)? Again, yes. But ignoring our guilt WILL hurt our health, families, our whole lives. You don’t have to shout it out. You don’t have to tell every person you know. But admit it. Name it and claim it… at least to one person (or to a counselor, never hurts to pay for a friend!). It will help. Trust me.
  2. Let go of comparison. Friends, comparison is quick sand. We have little energy, and yet so much of it is wasted on looking around and seeing what other parents are doing, how their kids act, how they look, etc. One way we can attempt to let go of comparison is to become an ally of the person with whom you compare yourself. Ask her out to coffee. Talk about your life. Let her talk about her life. We all know that the best resources on our special needs journeys are other parents. Tap into that. Odds are, you’ll have things to offer, too. And more likely than not, we are all in the same boat.
  3. Take care of yourself. This is a hard one. Every time I encourage people to take care of themselves I get push back. And for good reason. “How can I take care of myself, I don’t have any help with my kids.” “I have to work.” “There isn’t an extra second in the day.”

Here’s the thing…

I’m not going to tell you that you can find time for yourself. I’m not going to pretend that I know your situation. I hate it when people do that.

Maybe there is no way to get help. I don’t know if it is impossible to do something for yourself. But I encourage you to try. Look for respite programs at churches or through the State. Ask a family member or friend to watch your kids for an hour. Buy macaroni and cheese for a meal so that you can use the extra money for coffee. I want to be sensitive, though. I know some of you will read this and still say, “Yeah, right, Gillian.”

I see you. And I care. All I’m saying is that if there is any way possible, try. 

4. Set small goals to pay attention. If you are anything like me, than I guarantee that having kids with special needs does hard things to your marriage and to your other kids. It just does. It helps is to set really small goals. I’m talking super tiny goals to pay attention to the people you love. Sit down and talk to your husband for 10 minutes. Look your kids in the eye when they get home, ask them about their day, and really listen. Show you care by writing a note or sending a short text. Of course, big gestures are great, too; date night, a movie out with one kid at a time. But if that doesn’t happen often, then set small goals to pay attention and let those small acts feed your soul. Fight your guilt.

Special needs and guilt management? Really, this little list helps?

Maybe not. Maybe it is trite. Maybe I am not helping by oversimplifying things.

I’m in a tug boat trying to make a dent in an iceberg.

But I hope these few thoughts help. At best, this blog post has created five minutes in your life to think about your guilt. At least, you are reminded that you are not alone.

Because you are not alone.

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Sign up for MEMOIR 101 & get a FREE 30 minute writing consult! My birthday present to you.

03.02.17

Sign up for MEMOIR 101 & get a FREE 30 minute writing consult!

A present for you! A FREE 30 minute writing consult. Here’s how and why… Today is my birthday. I’m happily 42 years old. For real. My 30s were pretty terrible (another blog post, or a book, or another book. Wait, already have ’em. Also, yes, I know I’m a drag). But, I’m excited about my new endeavor. Recently, I launched an online writing course called MEMOIR 101, write a memoir worthy of publishing. The class offers six lessons (details and topics here!) and each one includes an intro video, PowerPoint with embedded videos, downloadable notes, and an opportunity to interact in a comment section.

So, what’s the birthday present?

Okay, here’s my birthday present to you. Sign up for Memoir 101 (Just $167. Some online courses are over $1000!) and you’ll get a FREE 30 minute writing consult with me (Facetime!). My consultations regularly start at $65. If you grab on to this, you’re getting a deal. I don’t know everything, but I have published two memoirs and self-published one eBook. We can talk about anything you want, but it will probably be about writing because that makes the most sense, right?

What is memoir?

Just a quick explanation in case someone needs one: Memoir is nonfiction. It is different from ‘how to’ books. Memoirs are true stories made into art, hopefully the kind that pushes both the reader and writer towards a greater universal truth, self-exploration, and the need we all have; to know we aren’t alone.

Don’t get memoir confused with autobiography. An autobiography is a book about a whole life. A memoir is about a portion of (or you could say, an occurrence in) life.

Think of it like this: in memoir, you are looking at a part of your life through a microscope. An autobiography is a panoramic view.

When memoir is done right, it reads like fiction. Even though all the events are true, it is still a story that must contain scene, characterization, dialogue, etc.

Everyone has a story.

I’ve been writing professionally for over eight years. People often ask me about my experience. They tell me that they have a story to write. Well, now I have a concrete way to help! Memoir 101!

Birthdays come and go. And so will this gift! My FREE 30 minute writing consult opportunity is available until next Thursday, March 9th.

Wanna join me? I hope so!

SIGN UP FOR MEMOIR 101 and get your free consultation with me. Once you purchase the course, I’ll send you an email to set up a time to chat.

I promise I’m not as obnoxious as I’m coming off in this blog post.

At least, I don’t think I am? Hmm…

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How to help a depressed friend

02.13.17

 help a depressed friend

 

People often ask me how to help a depressed friend. That depends.

 

If you are not super close, help a depressed friend by:

-Reaching out via text or with a card letting her know you are praying for and thinking of her.

-Leaving a small gift or a meal (without the expectation that she will open the door).

-Praying for them regularly.

 

If you are a bit closer, help a depressed friend by:

-Doing all of the above.

-Noticing when she is withdrawing (no longer attending church, events, or other activities he previously participated in).

-Taking a little more intentional action when you notice; call once a week. Text more often. Let her know she is loved and not alone.

-Inviting her out without the pressure of acceptance. If you are refused, try again (but give it time. It may feed into her guilt and anxiety).

-Dropping off a book or another thoughtful gift. For instance: a small box of encouraging quotes and verses.

 

If you are a very close, help a depressed by:

-Doing all of the above.

-Reminding her that getting out will help her get out her head.

-Standing there. Don’t give up on her. She needs support in and out of depressive episodes. While depressed, that support may be from afar. When she is doing better, she needs to know that she still has friends, that she isn’t judged, or considered a lost cause.

-Being more specific with Bible verses, direct encouragement, and gentle reminders of things that have helped her in the past during particularly difficult episodes. You’ve earned her trust to speak into her life. If you aren’t close enough to her, she will resent it.

-Telling someone. If she talks of self-harm or suicide but doesn’t want you to tell anyone, tell anyway.

-Expecting to run the show if she agrees to come out.

 

How exactly does that help a depressed friend? Let me explain:

Drive her to a coffee shop, pick where to sit, and order for her. Decisions can be grueling at times. If you want to talk, please do, but don’t expect interaction. You are responsible for the conversation. You will basically talk to yourself. No worries. Please keep talking. It helps. Cloudy thinking and interaction are very difficult.

Like I wrote in my book, Still Life, A Memoir of Living Fully with Depression, a friend equated socializing while one is depressed to running a marathon with a broken leg.

Please know that your friendship is a vital part of recovery. If you are a friend to someone with depression, thank you, thank you, thank you.

*NOTE: ‘Her’ stands for ‘Him,’ too.

Want to know more about my journey with Major Depressive Disorder? Check out my book:

Still Life, A Memoir of Living Fully with Depression

Read this if you want to help a depressed friend.

*Interested in writing memoir? Checking out my online course: Memoir 101, Write a memoir worthy of publishing.