Should you throw a birthday party for your child with special needs?

Should you throw a birthday party for your child with special needs?

When the time is right… YES!

We did it. We finally had a ‘friend’ birthday party for our daughter Evangeline when she turned eight years old a couple of weeks ago.

I know some of you are probably thinking, ‘why is this even a question?’

I get it. I really do. Of course all kids deserve parties. But for some of us, it just isn’t that simple.

The thought of a party frightened me. I wanted the party to be fun for her but I worried it would all be too much. Evangeline has a dual diagnosis of Down syndrome and autism, she can get overwhelmed easily, and so far at best hasn’t shown much interest in her birthdays; presents, singing, the whole thing. At worst, she gets spooked by it all. She hates lit candles, and for some reason doesn’t care for the birthday song.

Except for cake. This little chick loves cake.

But I wanted a friend party for her because nonverbal doesn’t mean she doesn’t understand. I wanted to show her we were gathering to celebrate HER. I wanted her to feel our love, to know how thankful we were to have her as our daughter, sister, and friend.

I wanted the friend party for my other kids, too. I would hate for them to wonder why they get some things and my kids with special needs don’t. They know it is Evie’s birthday. They love her. They want to celebrate her. To them, she isn’t Evangeline with Down syndrome and autism. She’s simply Evangeline, their sister.

I wanted the friend party for the people in the world who still, for some mind-boggling reason in 2014, don’t think individuals with disabilities deserve things like inclusion in schools and communities, birthday parties, and yes, sadly sometimes, even life itself.

And I wanted the friend party for me. Because I worry that sometimes our family life gets too small, because things like friend birthday parties can be difficult and disappointing and so we choose not to do them. We don’t want to fail. We don’t want bad memories for our children. We don’t want bad memories for us.

But I fought those feelings, and planned a party. And we attempted to do it in a way that would be enjoyable for all the kids who would attend, both special needs and typically developing.

The Party

We had it at our church. The room is set up for kids with special needs. The building has an elevator and ramps and a quiet room for people who need a break. Plus, Evangeline knows the space and is comfortable in it. She is used to a lot of noise there and a little chaos because she attends Sunday school every week. I wanted to make sure there was enough room for everyone and that our little one was at ease. This space was perfect. If you don’t have a space like this available in your community, get creative. Maybe a room at the library would work, or perhaps your home is big enough. Just think about how many kids could comfortably fit and then invite like three less.

Evie's 8th birthday

Evangeline’s teacher, Ms. Stephanie, attended! She was a great help and is an amazing advocate for Evie. I’m so glad we invited a few adults who love Evie and who could pitch in.

Evie's 8th birthday6

We had snacks and mini cupcakes, but overall didn’t make a big deal over food. On the invitation I made it clear that a full meal wouldn’t be provided. Eating can be stressful for some kids, and others may get nourishment through tube feeding, or have certain allergies. So we played down eating and just put out things like yogurt and grapes for people to snack on.

Evie's 8th birthday4

We threw out the birthday song and candles. Evie doesn’t like it, so we didn’t do it. But I did plan a few activities: coloring sheets on the tables, a ‘pin the hat on Barney‘ game without blindfolds that every child could participate in, even if that meant they needed help, and a dance time complete with “Head, Shoulders, Knees, and Toes” and “The Hokey Pokey.” Again, kids could participate or not, and the ones who preferred being in another room during that time were paired up with a buddy willing to initiate quiet activities or just to hang out. (My husband wants everyone to know that although he could only find neon pink poster board, he still drew a kick-butt Barney free hand.)

Evie's 8th birthday3

About seven or eight kids attended with their parents, plus our family, and some other friends. We all had a great time! Afterwards, we helped Evangeline open up her gifts one at a time throughout the next few days. That worked out way better than overwhelming her at the party, and attempting to get all the kids to sit and watch. At the end of the party, each child received a goody bag with stuff Evangeline likes; chocolate, a harmonica (kid loves music!), and bubbles. When I throw kids’ parties, I do it Dollar Store style!

Evie's 8th birthday2

It was a great day! So great, that we were too busy having fun to get any pictures with the birthday girl as a family.

But the memories are in our hearts.

And they are good ones.

Evie

Should you have a birthday party for your child with special needs? A resounding yes. You can do it! When the year is right for your little one (and don’t feel bad if this year isn’t right. I don’t think the party would have been as successful last year. No mom guilt, now. We know our kids the best), just throw out all the ‘shoulds’ you can think of regarding a kid’s birthday party and build it around your child. I’m cheering for you! So is Evangeline!

What would you do if you heard the word cancer? Warrior in Pink BOOK GIVEAWAY

What would you do if you heard the word cancer? I’m giving away a copy of Warrior in Pink, a Story of Cancer, Community, and the God who Comforts this week on the blog. Read on for details about the story and about the BOOK GIVEAWAY.

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Here’s more about Warrior in Pink, and don’t forget to read until the end to find out about the BOOK GIVEAWAY, too!

 

The Lord is the one who goes ahead of you; He will be with you. He will not fail you or forsake you. Do not fear or be dismayed.

Deuteronomy 31:8

She had it all—described as an “Asian Martha Stewart.” Her home, the food she cooked, the clothes she wore, the clothes her children wore—all flawless. But then doctors diagnosed her with breast cancer. My friend tried to reach out to her, others around her tried to help, but she refused them and shut down emotionally.

On Wednesday morning six of us met in the food court at the Irvine Spectrum mall halfway between our homes. Located between Los Angeles and San Diego, Irvine, California, boasted being the safest city in the nation. Our wicker chairs circled around a large, round metal table surrounded by potted flowers and towering palm trees. The setting described well the nature of our group and our self-appointed name: The Oasis. Week after week we unpacked our bags and filled the table with notebooks, four-color clicky pens, Bibles, coffee, and water bottles. And week after week trust grew steadily like the palm trees around us. We began to unpack the deeper places in our souls as we shared our struggles and secrets. Our choice to take time from our busy weeks to invest in building our relationship with God and each other yielded the blessing of a true oasis. Our group became a refuge and a place to refuel. Conversation came easily and we welcomed questions about the Bible. We laughed often, sometimes shed tears, and inevitably would go off on rabbit trails that eventually took us back to what we had learned in the Bible. What most groups covered in one week, we spilled over to a month.

This particular Wednesday morning Elaine shared about the Asian Martha Stewart. I leaned in to hear more. Her voice grew quiet as she struggled to share the last part.

“She couldn’t handle how her body changed. She couldn’t hold her perfect world together. She ended up committing suicide and left behind her husband and two kids.”

The story gripped me. I had never met the Asian Martha Stewart but could relate to her desire of wanting everything together, of being the strong one, of going inside when challenged with emotional pain, of not wanting to be a burden to others. I could see myself closing off from people as she did.

The conversation probably continued around me. But in that moment I sat still. I heard the background voices and sounds of the food court, the trays and ice machines, chairs being pushed into tables, paper wrappers being crumpled. Right then, I chose to pray. “God, if anything like that ever happens to me, I purpose right here, right now, I will let others in.”

I prayed this in October, two months before my life careened from the doctor call no one wants:

“You have cancer.”

And looking back,

that story,

that prayer,

that moment,

that decision.

It made all the difference.

About the BOOK GIVEAWAY

Friends, doesn’t this book sound amazing? Leave a message here between today and this coming Friday, October 24th (before midnight) for a chance to win a copy! A random number will be chosen… it could be you! And tell us, how are you asked to be a warrior in your life?

Vivian

Vivian Mabuni joined staff with Cru (Campus Crusade for Christ) 25 years ago. She currently serves on the Epic National Field Ministry Team (Epic is the Asian American ministry of Cru). An international conference and retreat speaker, Vivian recently joined the Speakers Bureau for Susan G. Komen, Orange County. Her first book, “Warrior In Pink: A Story of Cancer, Community and the God  Who Comforts” (Discovery House Publishers) released in April. Married 23 years to her husband, Darrin, and mom to three wonderful kids, Jonathan (21), Michael (17), and Julia (12). They live in Mission Viejo, California along with their German Shepherd, Koa. Connect with her at the following places: www.vivianmabuni.com, Twitter, and Facebook. 

5 strategies for YOU when your spouse fights depression

5 strategies...

Everyone, I’m thrilled that my husband Sergei, in the midst of everything else he’s got going on, was able to write a blog post in honor of Mental Illness Awareness Week. A lot of us know that depression is a family illness. I often get questions from spouses of someone who is depressed. Any tips? What can I do? How do I cope? I’ve asked my husband to share some thoughts. Please join me in welcoming him… 

What is it like to live with a person who struggles with depression?

What is it like to love a person who struggles with depression? What is it like to be a family affected by depression? Well, I plan to share 5 strategies for YOU when your spouse fights depression.

But first, this…

Depression is a thief. A pickpocket. Swiping a memory here and there. An emotion, a plan for the afternoon, part of a conversation. A burglar. Leaving behind empty surfaces and containers used to be filled with childhood and marriage and friendship. It is a mugger. Stepping out of the dark. Threatening and taking the carelessness of the night away. A kidnapper. Taking, silencing, tying up, holding captive.

Until days later, or weeks later, she wanders back home, staggering, unsure of what happened or how she escaped.

It is sort of like that. Sometimes.

But here are five specific thoughts I had in regards to my wife’s depression. I hope it is helpful…

5 strategies for YOU when your spouse fights depression

I have learned these seemingly common-sense strategies for loving someone struggling with depression through prayer, in therapy, and in conversations with others. The strategies are also frequently forgotten in frustration or discarded in favor of self-pity or denial. And then they are learned anew. That’s just how it goes.

1. Marriage is about grace, not fairness

Marriage is not based on an exchange of goods and services. It is not about fairness. It is not about each spouse pulling your own weight. It is about grace.

This applies to all marriages, even if both people are mentally healthy (like that is even possible). So, to love someone is to serve them without expectation of them loving you back. It is not based on the quality or even reality of their love. Yes, depression is not fair. But marriage is not fair either.  And grace covers both.

2. Be flexible

Be okay with canceling stuff. Let your spouse know that it is okay if plans need to be changed last minute. Try to take guilt out the equation. They have enough guilt as it is. Let other significant people in your world, like people at work, know that occasionally you have to play it by ear. And don’t blame it on your spouse in front of them.

3. Learn to communicate more effectively

One of the biggest struggles in our marriage has to do with expectations. Yes, I did write about being flexible in the last paragraph but it is still really hard to adjust. Communicating effectively about the mental state of my wife on that particular day helps. We use a color system. I ask: How are you feeling? And she might respond: I am on green. No lengthy conversation necessary, because green means good. Yellow means: This day can either get better or worse; let’s wait and see before we decide to take all the children to the zoo. And red means: It’s bad, I need you to care for me and help me today.

4. Enjoy good days

On green days, the trick is to enjoy them without wondering what color of the rainbow is next. Today is a good day.

5. Express what you are feeling

As we have all learned from various educational cartoon characters, it is not good to bottle up your emotions. But there are appropriate ways to express what you are feeling and there are inappropriate ways. Blowing up at the kids and complaining to them about their mother is inappropriate. Or unloading on your neighbor who just walked out to get the paper. Or very open Facebook status updates… all usually inappropriate.

But talking to a good friend whom you can trust and who genuine cares about you and your spouse – that is quite appropriate and very helpful. I have found that journaling helps, too. In my case, it is writing down prayers to Jesus, who is as reliable as God and as close as a brother.

-Sergei Marchenko, Pastor of Christian Fellowship Church in Chicago, husband to Gillian, and papa to four beautiful daughters.

Mental Illness: when you fear you are losing your mind on a weekly basis

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Mental Illness: when you fear you are losing your mind on a weekly basis

(As this sometimes occurs, please forgive me if this post comes across muddy. I am not doing so hot today. Also, warning: this post my have some triggers for those who struggle with mental illness.)

This week, October 4th through the 11th, is Mental Illness Awareness Week. I knew that I was supposed to post about this because I openly write and speak about my fight with major depressive disorder. The only problem was that I was actually busy fighting my depression on Monday and today, although I am not great, although I am fighting ridiculous thoughts that are churning in my head,:

You are losing your mind. Just give up. You can’t do this (usually eluding to life, that is).

I knew that I needed to sit down and write something, no matter how convoluted it ended up being. Because I want to throw my hat in the ring. I want to add my story and my voice to a subject that is often criticized and ridiculed and not even considered real. This is my life, and through it, I want to glorify God. Sometimes, I think glorifying God simply looks like pure, unabashed honesty because maybe that will help someone else in their fight and let them know that God is there, too.

How it goes…

I kind of felt this specific depression struggle on the horizon. This past weekend I attended a national conference and presented workshops on special needs and depression. My days were high stress and packed and in the back of my mind, in the midst of talking to other moms who fight some of the same battles I do, I knew that when I got home, unpacked, kissed my husband and my kids, and finally sat down, I may unravel a bit.

And that’s what happened.

But this week is important. I want to help spread awareness about mental illness. I want to add my voice in the conversation and say that, yes, functional (most of the time) members of society fight mental illness. People of faith fight mental illness. Moms fight mental illness. 1 in 4 people in America have some kind of mental illness.

It affects everyone.

And yet, our culture still stigmatizes depression and other disorders. Some Christians want you to ‘pray it away,’ other people just want you to ‘snap out of it.’

People want to drop the ‘illness’ part of mental illness. And that has to change.

My history of mental illness

I’m a former missionary, a pastor’s wife, and a leader in ministry. My mental health history goes like this: melancholy child who thought it was normal to lie in bed for hours, frightened new mother later diagnosed with postpartum depression, struggling missionary and pastor’s wife who couldn’t understand why prayer and scripture did not calm the storms within, mother of a child with Down syndrome who for a time gave in to self-medication with cheap Chardonnay, ministry leader who suffered a breakdown resulting in a final diagnosis of Major Depressive Disorder.

In the last couple of years I’ve started to work a program that seems to help the depression monster stay away for longer periods of time. Some of my tools include my family, Jesus, a cognitive behavioral therapist, my church community, antidepressants, and recently, essential oils.

But here’s the thing: I still fear that I am losing my mind on a weekly basis. And all of this is exhausting and difficult for me and my family and friends.

How it affects them…

At the conference, several people asked questions about my husband Sergei and my four daughters. How do they deal with my depression? Indeed, depression is a family affair and my struggles have altered their lives greatly. This week, I’ve asked my husband and my oldest daughter to each write a blog post about what it is like for them. I hope it works out for them to get something to me. Stay tuned for their responses.

I usually love to wrap my blog posts up in pretty little bows even though I know that’s not real life. With some things, there just aren’t any bows. This is one of them.

But I will say, I’m not giving up. When my brain circles around thoughts like: you are losing your mind, I’m going to continue to challenge it.

No, I’m not. But thanks for your opinion.

Jesus said “I came so that they could have life, and have it abundantly.” John 10:10 You, thoughts, are not abundant and you are not real life.

I’m okay, today. I’m okay. I’m okay. I’m okay.

This post description claimed that there would be encouragement for those who fight depression. OK, here goes:

You don’t have to have your crap together for Jesus to love you AND help you. He already does. He already is.

You are NOT depression. You are so many things. Depression is just one part of your life.

As hard as it is, depression is an active illness. I urge you to tell someone about your struggles. I urge you to get help. It can get better, I promise.

You are not alone.

Introducing my monthly newsletter and a FREE eBook download: Pulling to Stand; Glimpses of parenting two children with Down syndrome on very different paths

 

Introducing my monthly newsletter and a FREE eBook download: Pulling to Stand; Glimpses of parenting two children with Down syndrome on very different paths

Pulling to stand ebook final cover with SSD

October!

It is almost October, one of my favorite months!

It is my favorite month. I love crunchy leaves, crisp air, and pumpkin patches. I also love it because it is Down syndrome awareness month!

This year in honor of DSAM and to help raise awareness about and appreciation of individuals with Down syndrome, I am kicking off a new monthly author email. If you subscribe, the email will come directly to your inbox.

In my monthly newsletter, you can expect:

-Book and speaking information before anyone else gets it

-Thoughts and encouragement about all things family, faith, and life

-Embarrassing stories about myself and my family my husband probably wishes I won’t share

-Some free downloads and giveaways periodically… for your eyes only!

-And someone suggested recipes… But I think I’ll spare you on that one (Sergei is the main cook around here.)

And Introducing Pulling to Stand; Glimpses of parenting two children with Down syndrome on very different paths, a FREE eBook

Also, to sweeten the pot, I am giving away a free PDF download of my brand spanking new eBook Pulling to Stand; Glimpses of parenting two children with Down syndrome on very different paths as a special gift when you sign up here on the website for my newsletter. The eBook is a compilation of my favorite blog posts from the last seven years, showing the trajectory of Polly and Evie’s lives. 

Interested? Check out the widget on the right side of my website. All you have to do is enter your email and hit subscribe. Then you’ll receive a confirmation email to make sure you really meant to do it and the download will be yours!

You might want to get to gettin… The eBook may not be free after October and my first newsletter comes out at the end of this week.

Thanks for you friendship and support. I appreciate you all.