What about us? A sibling to kids with disabilities shares her needs

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Please help me welcome my beautiful (almost 15 year old) daughter Elaina as she writes about her experience with having siblings with disabilities. Great job, Elaina! I love you!

 

What about us? A sibling to kids with disabilities shares her needs

By Elaina Marchenko

Today, my sister Zoya and I watched Polly and Evie, our two little sisters with disabilities, while my mom went out for a haircut. It being summer we do watch our sisters more often, but we don’t really mind. Usually we pop in a movie, go outside, or just have fun playing Barbies together. But, today Evie threw a tantrum, stressing us out, pushing Polly’s attention more out of the way, and resulting in bickering. After mom came home, we talked about what happened and how everybody was. It warmed my heart when my mom asked me if I was okay! I wasn’t the one throwing a tantrum or having trouble communicating, yet my mom took a minute to check in with me. Little things like that help remind me that my parents do care about me and don’t forget about their other kids. In light of my experience today and others like it, I came up with a list of three things parents can do to make sure their kids without special needs feel just as important as their siblings with special needs. Keep reading to see what my three tips are…

1. Take Time to do Fun stuff

Now, this may be an ‘aha’ moment or just a good reminder but it is very important to take one on one time to do things with your child. By planning fun activities to do with your kid it makes them feel like you care about their happiness and that you aren’t forgetting that they are in tough boat too. I understand that parents to kids with special needs have a lot of obstacles and struggles, but sometimes the kids who are typical share some of those struggles. So plan a day of shopping, see a movie, or even just talk! Just make sure it is one on one and something you both want to do.

2. Ask us simple questions that might have slipped your mind otherwise

I know I appreciate it when my family is having a hard day and my parents ask how my day at school was. It shows you not only care about big struggles with your kids with special needs but you also care about your typical kid’s homework or what their are planning to do on the weekend. This is a simple way to show you care.

3. Ask us our opinions on things regarding your kid(s) with special needs

By asking us our opinions it makes us feel like we are in the loop and we get to know about what things have been taking up a lot of our parent’s energy or time. We better understand it instead of being outside of it all and feeling neglected. Even if we don’t really get a say, it’s nice to feel like our opinions are heard.

I hope this helped! Remember that siblings of kids with special needs are usually pretty flexible and understanding. Yes, we all have our moments, but we love our family members with disabilities as much as our parents do, just maybe in a different way.

Thanks for reading and I hope this helped!

Church: 5 reasons why you must minister to families affected by special needs

You must minister to families affected by special needs

Church: 5 reasons why you must minister to families affected by special needs

This last weekend, I got to speak to a church about special needs ministry. It was such a valuable time for them and for me, I thought I’d share some key thoughts.

Here are 5 reasons why you must minister to families affected by special needs…

1. It’s in the Bible

  • 2 Samuel 9: David and Mephibosheth. David took in his friend Jonathan’s son who had special needs and brought him to eat at the King’s table.
  • Mark 2:4: A man who was a paralytic wanted to get to Jesus for healing but couldn’t, so his friends lowered him through the rough to meet Jesus.
  • Luke 14: 12-14: Jesus commands us to interact with the special needs community

12 Then He also said to him who invited Him, “When you give a dinner or a supper, do not ask your friends, your brothers, your relatives, nor rich neighbors, lest they also invite you back, and you be repaid. 13 But when you give a feast, invite the poor, the maimed, the lame, the blind. 14 And you will be blessed, because they cannot repay you; for you shall be repaid at the resurrection of the just.”

 2. It’s missional

Matthew 28:18-20: The Great Commission 

18 And Jesus came and spoke to them, saying, “All authority has been given to Me in heaven and on earth. 19 Go therefore and make disciples of all the nations, baptizing them in the name of the Father and of the Son and of the Holy Spirit, 20 teaching them to observe all things that I have commanded you; and lo, I am with you always, even to the end of the age.” Amen.

Some disability statistics:

-600 mil people world-wide are affected by disabilities.

-About 50 mil people in the US are affected by disabilities.

-Almost 13% of children in America have a developmental disability.

-1 out of 68 are diagnosed with Autism

-1 out of 691 live births result in Down syndrome.

So, we are talking about a large community of people and a huge mission field right here in our back yard.

Also, a lot of families affected by disability don’t/can’t attend church.

*I asked people who have kids with special needs on my Facebook page if they attend church. Here’s what some of them said: 

-My son was 4 and not yet fully toilet trained. A church volunteer who was unfamiliar with my son told me he couldn’t be checked in to Sunday School because he wasn’t toilet trained. It was Easter weekend so the line to check in was long and other parents were waiting behind me. I felt so embarrassed and hurt that we left the building and haven’t been back. That was two years ago. Just thinking about going to church makes me panic.

Another parent said:

-I worry he will disturb people, and to be honest I don’t like the looks I get from people. I have gotten the angry look, shhh’ed, and the pity look. The last one is the one that hurts the most – my son is a gift, not one to be pitied.

And this:

-Our church rallied around us when we were pregnant with our child with Down syndrome but since we  had him, its been one saddening experience after the next, mainly because the volunteers are spread thin and uneducated in acceptance and inclusion… One time our child was put in a plastic bin in the corner for children’s church while the rest of the kids learned about Jesus.

Brothers and sisters, this should not be.

3. It’s good for the church

Diversity is essential for the heath of the local church. 

Paul talks about the church being one body with many members in 1 Corinthians 12:21-23:

21 And the eye cannot say to the hand, “I have no need of you”; nor again the head to the feet, “I have no need of you.” 22 No, much rather, those members of the body which seem to be weaker are necessary. 23

The so-called ‘weak’ members are necessary for the health of the body. Also, if we are honest, aren’t we all weak at some point? Jurgen Moltmann said “Congregations without disabled members are – to put it bluntly – disabled congregations.”

Including people with disabilities makes a church healthier. Gifts like compassion and service are exercised. A theology of suffering develops. Our church in Chicago discovered that by serving those with special needs we learn to serve everyone better.

4. It’s good for individuals

It gets you out of your comfort zone. Francis Chan, in his book Crazy Love: Overwhelmed by a Relentless God said “But God doesn’t call us to be comfortable. He calls us to trust Him so completely that we are unafraid to put ourselves in situations where we will be in trouble if He doesn’t come through.” 
If the idea of ministering to and becoming friends with people who are different from you; say, people who have disabilities, scares you or makes you uncomfortable, than you should absolutely do it.

5. And lastly, It glorifies Jesus

The glory of the Gospel is revealed through ministry to and with individuals with special needs. It’s not just that God commands this, or because the church functions better with it, or because individuals are sanctified through it, but because this ministry glorifies and honors Jesus Christ.

Think about the gospel. Jesus accomplished the work of redemption not by strength but by weakness. Poverty, loneliness, pain, suffering, death, rejection, homelessness – all were part of the Savior’s life. Should the church try to be what Christ wasn’t? Of course, there is also power and glory of Christ. But they are revealed in our weakness lest we boast in ourselves.

1 Corinthians 1:27

27 But God has chosen the foolish things of the world to put to shame the wise, and God has chosen the weak things of the world to put to shame the things which are mighty.

God is glorified in our weaknesses, because then he is strong. The works of God are displayed in our brokenness. And we all are broken, every single one of us, outside of Jesus.

I care about special needs ministry

It’s personal. My family needs help/respite/spiritual care. My children deserve to be valued, loved, and served by the church. My children should also serve, just like any other person who is part of a community. Individuals with special needs are important to the church.

Church: This is how to greet my child who is nonverbal

Church: This is how to greet my child who is nonverbal

Nonverbal child greeting

Today I had the pleasure of being a guest on one of the most popular Christian shows on the radio: Midday Connection.

The host Lori Neff and I talked about my story (and my book Sun Shine Down), and about the specific challenges and joys in the lives of families affected by special needs.

We discussed what churches can do to support children with special needs and their parents and siblings, which got me thinking about our youngest daughter, Evangeline.

Evangeline has Down syndrome and autism and is nonverbal. Some of her go to behaviors (rocking, mouthing things, pulling hair, and ignoring people) can be alarming for those who have never met her.

And a lot of times people don’t know how to talk to Evangeline or how to interact with her, so they don’t.

I understand. You don’t want to say or do the wrong thing.

I find this especially in church settings.

So church, this is how to greet my child who is nonverbal:

1. When we walk into the building, please don’t give our family ‘the deer in the headlights’ look because you are unsure what to do. Even if you are unsure, hide it. Instead, welcome us warmly.

2. Welcome ALL of us. Attempt to make eye contact with me, my husband, and my children, even the daughter who will not make eye contact with you. This says, ‘I see you. I’m glad you are here.’

3. Don’t speak louder than normal to Evangeline. She’s not hard of hearing.

4. Don’t assume she doesn’t understand you or what is going on because she does not speak. My daughter picks up way more socially than you would imagine. Also, ask if she is utilizing another form of communication such as sign language or pictures.

5. Ask us if we have been to the church before, and what we think our children would like to do during the service (stay with parents, go to Sunday school, etc.)

6. Follow our lead. If we talk about Evangeline’s special needs, then feel free to ask questions to learn more about the dynamics of our family.

7. Don’t speak slower to Evangeline than the rest of us. Again, she understands.

8. Don’t be offended if our daughter ignores you. She struggles socially and her eye contact is sporadic at best.

9. Also, don’t say hello to her and then ignore her the rest of the time.

10. And don’t solely pay attention to Evangeline and ignore our other children. They all need a little attention. We don’t want Evangeline to be ‘special.’ Just treat her like you would treat any other new child to the church.

11. If we want to try a Sunday school class, take us to meet the teacher, and if there isn’t a program or buddy in place to help her that day, lay out our options for the morning with grace, whatever they may be (she stays with us, someone will come in a shadow her, we may have to stay with her for this week). But make sure we know that if we decide to come back, we can all brainstorm to have a plan.

12. Make it clear that you really are glad we came to church and that you hope the church can (if they don’t already) make certain modifications and alterations that help us all to feel comfortable and ultimately grow closer to Jesus.

Churches don’t have to have a full-blown special needs ministry.

But in this day and age, odds are many families with special needs will walk through your doors. Train your hospitality team how to greet them, and have a basic protocol of what to do to help them feel welcome and comfortable.

Believe me, we’ll be thankful for it.

Resources that can help your church with special needs:

Joni and Friends

Key Ministry

The Inclusive Church

If you’d like to listen to me on Midday Connection, here it is!

World Down Syndrome Day according to Polly, an 8 year old with Down syndrome

World Down Syndrome Day is Saturday, March 21st

Did you know that Saturday (3/21) is the 10th Anniversary of World Down Syndrome Day? People all over the world are doing their part: speaking in classes, passing out brochures, posting about it on Facebook, to make sure the word gets out. People with Down syndrome are more like the rest of us than different.

My daughter Polly, 8 years old, explains Down syndrome…

Polly and I put together a little video to help celebrate! We’d so appreciate it if you would share it. In Polly’s words “Down syndrome just means you need a little extra help.”

To learn more about World Down Syndrome Day, check out WDSD 2015 and A Day in the life with Down syndrome.

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And have you seen our book Sun Shine Down? I wrote this memoir about Polly’s birth and diagnosis of Down syndrome while we were living in Kiev, Ukraine.

You can read an excerpt of it on NoiseTrade right now!

Happy World Down Syndrome Day!

Letting go of self-sabotage

Letting go of self-sabotage on the special needs journey

It took Polly, who was born with Down syndrome, a long time to walk. When she was around two and a half years old, her physical therapist loaned us a stander; this wooden contraption that looked like it may have been used for torture at some point in the past, designed to strap kids in while standing upright to build muscle mass, you know, the stuff that is critical for one to stand and walk. Because of the existence of an extra chromosome in Polly’s make up, she experienced extreme hypotonia, i.e. low muscle tone and gross motor challenges proved difficult and frustrating for our girl.

Our assignment was to strap Polly up in the stander for three hours a day, every day. Did I mention she was two-and-a-half?

At first, surprisingly, Polly was indifferent. I would tell her, “Polly, time to stand,” and hold out my left hand, palm down flat, two fingers from my right hand making an upside down V on top of the surface.  Polly would shrug her shoulders and we’d began the various steps required to get in the stander.

Soon after, though, she grew combative about standing. This is where the sabotage emerged. She figured out how to hike her little rear up over the thick leather strap that circled her middle, thus creating a ledge to sit on while she was supposed to be standing. She pulled the Velcro strap apart one handed, attempting to free herself. Eventually, it was all out war. Polly kicked the stander, pulled off the strap, and tried to push over the large wooden base. Thankfully I always got to her in time and she was unharmed. She made it clear she was sick and tired of the stander.

But we plodded on. Polly’s inability to walk frustrated her even more than that blasted stander, and I, being her mother, knew the grueling assignment was for her greater good. So, I made sure she ‘did her time.’

Letting go of self-sabotage on the special needs journey

Friedrich Nietzsche said, “What doesn’t kill us makes us stronger.”

Then why do I sabotage so many things in my life that ultimately will strengthen me? I ignore my Bible for Facebook. I focus on what other children are doing and compare them to the things my children aren’t even close to doing. I pick fights with my husband, and snap at the kids. I kick, I undo, I push.

The special needs journey can be difficult. Our daughter Evangeline, eight years old (Polly’s sister), has autism and Down syndrome. She is no where close to potty training, and her sensory needs, at times, causes her to lash out and bite, and scratch, and pull hair. I find myself at my wits end. I’m exhausted and unsure of how to help her. I’m unsure of how to help myself.

In the New Testament, the Apostle Paul writes about these struggles:

For I do not do the good I want to do, but the evil I do not want to do–this I keep on doing. -Romans 7:19

I can’t speak for you. But I know that if I continue to ignore good, profitable, and God-honoring things in my life, my proverbial ‘standers’ that help to strengthen and encourage me, I will lack muscle desperately needed, the muscle provided by God, to parent my children well.

I will sabotage myself and my family.

And that’s not what God has for me. That’s not what God wants for any of us.

So, let’s all learn from Polly, today. If you are a Christian, abide in Christ. Stay in his word, even when you’d rather peruse the Internet. Talk to others about your struggles. Kiss your spouse. Hug your kids. Tape scripture on your refrigerator… Do whatever it takes to let go of our sinner’s sabotage that Scripture says so easily entangles.

I’m trying… I’m failing a lot. But I am trying some more.

After a while, Polly gave up on sabotaging her stander. She grew stronger, and started climbing stars, pulled herself up on couches, and stepped out again and again, one shaky, muscle building step at a time, to a fuller life of participation and joy.

I want that for me. I want that for you, too.

And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. –Philippians 4:7

*This post was first published on specialneedsparenting.net. 

Zemanta Related Posts ThumbnailHave you had a chance to read my memoir about Down syndrome Sun Shine Down? If not, you can find an excerpt Noisetrade or pick up a copy of your own on Amazon.