An eight-year-old birthday party with Down syndrome

An eight-year-old birthday party with Down syndrome

My daughter Polly invited all the girls from her second grade class to our house Saturday for her birthday. The theme was a cooking party. I ordered paper chef hats and aprons for everyone to use and then take home as party favors. The menu included homemade personal pizzas, a fruit caterpillar, a snack butterfly, and cupcakes (thank you Pinterest. I hate you but I love you).

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The guests arrived, and in twos and threes, dove right in to pizza making. My husband Sergei manned the pizza station, donned in his own personal apron, “Mr. Good Looking is Cooking.” The rest of the girls gathered at the party table, constructing caterpillars out of grapes and a cherry tomato for the head. A few of them fought over who would sit next to the birthday star. Girls will be girls.

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After eating they moved on to presents. Girls oohed and aahed as Polly ripped open present after present with delight. “Thank you for the Strawberry Shortcake car, Libby.” Even in the midst of her excitement, Polly made sure to thank each person for her gift.

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After presents, Polly’s friends, all whom most people would deem ‘typical’ piled onto my girl for a group hug. They laughed, and played before popping in a favorite video to watch while eating cupcakes.

Now, I want to be careful.

Perhaps a brand new mother has stumbled upon this post. If that’s you, I want you to know that Down syndrome isn’t always easy. I’m not going to say that life with Down syndrome is just like any other life. It waxes and wanes and some kids have more struggles than others. Sometimes a child’s disability doesn’t warrant what one would call a ‘typical eight-year-old party.’

But I think there is a large population of people who think life with Down syndrome equals a death sentence. To you I say, I’m not hurt you think that. I felt the tug of those words after Polly’s birth. My feet filled with lead. I didn’t think we’d ever have any happy birthdays at all. But now, eight years into our journey, there are more ‘normal’ experiences in our life, in Polly’s life, than not.

Her life is an education I desperately needed. I’m thankful.

Polly has shown me that there are differences in all of us. Some differences are good. And some are difficult.

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She’s also shown me that this is what an eight-year-old party looks like… Down syndrome or not.

World Autism Awareness Day – working on it

World Autism Awareness Day – working on it

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Today is World Autism Awareness Day

I forgot.

“Shouldn’t Evie be wearing blue today?” Sergei asked in passing as the kids got ready for school this morning.

“You know, for the autism thing? We got a note about it.”

I changed her shirt, and got our little girl, now seven years old, ready in time for the bus.

I’ve been a part of the special needs world for eight years. I advocate. I love. I accept. I try to help my kids grow and learn and have great lives.

But this is our first World Autism Awareness Day. And I’m not prepared at all.

Evangeline received her diagnosis of autism, in addition to Down syndrome, seven months ago.

I remember thinking she might have autism five years ago, the day we met her in an orphanage in Ukraine. Fear climbed up my gullet that day, and I pushed it down.

I’ve always been afraid of autism.

When we brought Polly home from the hospital after her tumultuous birth in Ukraine and her diagnosis of Down syndrome, I turned her bassinet away from the television. Somehow I got it in my head that watching TV could cause autism. How I got there I have no idea. I wasn’t familiar with autism, had never heard of the possibility of a dual diagnosis, and was living in a foreign country, completely alien to the world of special needs.

But the fear continued.

She’d look at lights or a moving fan as an infant, and my pulse slowed.

By now we were living in the States and I was well aware of the possibility of a dual diagnosis of Down syndrome and Autism for kids. Sometimes I’d sneak on to an online forum, a support group for families affected by a dual diagnosis. I’d cry as I read about kids developing fine, albeit a bit slower than peers because of the extra chromosome, and then it all just stopping. The child regressed. Autism was diagnosed.

Please God, don’t let Polly have autism.

With time my worry over Polly, at least in that area, decreased. She was more than social to everyone everywhere.

And then we adopted Evangeline.

I noticed the lack of eye contact. She was nonverbal. Most of the time she functioned like there was a thick veil over her head, separating her from the rest of us.

For years I tried to get her a dual diagnosis.

It’s post institutional behavior, I was told by the people in white lab coats.

But my mother’s heart knew.

The day we got the definitive diagnosis I cried.

I cried out of relief that we weren’t crazy.

I cried for her, knowing that her road indeed was harder because of this.

I cried because still, in the midst of all my advocacy and acceptance and love for my girl, I was afraid of autism.

I wanted to turn our lives away from the TV so to speak. I didn’t want autism for her.

I didn’t want autism for us.

Here’s the part in the post when the music queues and I say that I’ve gotten over the hump and that I am no longer afraid of autism.

Yeah, not there yet.

But I can say I love our girl, and the same advice I received regarding Polly and Down syndrome, to ‘let the baby change you’ applies here.

Be kind for everyone you meet is fighting a hard battle – Ian Maclaren

It’s World Autism Awareness Day and we are seven months in.

The best I can say is that I am working on it.

5 things to do/not do after you receive a special needs diagnosis at Chicago Parent

5 things to do/not do after you receive a special needs diagnosis

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I’ll never forget the moment I was told my baby had Down syndrome. I was sitting next to her incubator in the hospital, holding on to her heel. I remember being pleased because her eyes were open. She stared intently into mine. The doctor spoke and the words ‘Down syndrome’ crashed over me. Suddenly I was alone without a buoy, paddling like crazy in a choppy, new ocean.

When a parent first hears, ‘your child has a disability,’ it can be shocking, saddening and scary.

If you find yourself with a special needs diagnosis, I have a few suggestions that might help. Read the rest of my article at Chicago Parent..

After finding out the special needs diagnosis, I remember my brother calling me.

Now, I was living in Ukraine and he was all the way in California.

I can’t remember exactly what he said but it went something like this:

“I’m not going to pretend I know what you are going through right now, but I went online and found out some things I can do and say to help you.” He told me that he loved me, and that he was in this with me.

One of the most precious moments of my life. The fact that he took the time to look up a few things… I can’t even…

I also included a list of tips for your friends and family for you to share with them. Advice includes showing up, educating yourself, and refrain from platitudes and pat answers.

I’d love to hear from you. What is your advice for parents who receive a special needs diagnosis and their family and friends?

On depression, hiding, and the need for raised hands

On depression, hiding, and the need for raised hands…

(Please note: Once again, forgive my writing sluggishness. I’m sure there will be mistakes in the prose. My mind is a bit wonky after this recent depressive episode…)

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“How did your talks on depression go?” my mom asks over the phone as the sound of pots and pans clink in the background of our phone call.

“I mean, was it hard? I found that when I’d go to support groups for fibromyalgia years ago, I’d come home with all the symptoms everyone else talked about at the meeting. Did talking about depression, well, depress you?”

I try to suffocate the sigh rising in my throat. On this phone call I’ve attempted to fake a lift in my voice because when I’m depressed, it lowers an octave. I could host a midnight jazz radio show.

I don’t want my mom to know I’m struggling. Friday ended in exhaustion after speaking to four groups of women on four consecutive days. On Saturday I rallied, and jumped at the chance to spend time with Sergei and Evangeline at the Garfield Park Conservatory in Chicago while the other girls were visiting her in Michigan. But the wave was forming. I felt it in the aches and pains in my body. My mind grew muddy. Lethargy took over usual emotions as we wheeled Evie around ferns as tall as the ceiling.

I woke up Sunday totally stuffed, unable to do much of anything, and thus starting a two day depressive episode that found me, mostly, in bed watching old movies and crying.

Why don’t I want her to know? She understands. She cares. She won’t judge.

I want change. I yearn for growth, acceptance, and understanding in the church. I want people to get help. And still, I hide my depression from my mom, even after standing in front of two hundred women speaking my story into a microphone. My message was simple. Christians get depressed. It doesn’t mean thy are no longer Christians. I looked people in the eye and prayed my words into their hearts.

Please help me erase even a small corner of stigma that holds mental illness in its grip.

About a month ago, Gifted for Leadership published an article I wrote about mental illness and the church. In a few short paragraphs I attempted to add my voice to the low hum rising up from the church about mental illness.

And yet, in my next personal bout of depression I hide and lick my wounds, even from my own mother. I hold myself still. I breathe out prayers and wait for the wave to lose its power.

In the midst of a depressive episode I still don’t have the wherewithal to reach out for help. So am I really a good person to urge others to try?

I don’t know. It’s self preservation, this hiding business. And honestly, at this point in my journey with major depressive disorder it can’t be helped.

But I thank God for progress. My depression doesn’t hold me under as long any more. I come up for air quicker. I do the next thing to get better. Some days, I shoot my hand up in the air, counted, a person fighting to reduce the stigma of mental illness in the church. And other days, for me, the next thing is simply to roll over.

God is at work. Saturday, Rick and Kay Warren are hosting a gathering on mental health and the church in California.

Emily Wierenga wrote a powerful post about what it’s like to be a mental health statistic in the church this week and shared similar sentiments to mine (albeit much more eloquently) about mental illness and this upcoming conference:

Rick and Kay Warren and the Saddleback Church are opening up a dialogue about mental illness this coming Saturday, in light of the struggle and suicide of their son. I love this. I love that we are finally talking about it. But I hate that it took the death of a young man to do it. And I hate that he, and I, are “problems” that the church has to talk about.

Amen, Emily. Thank you for raising your hand and joining your voice. I hate that these conversations cost lives too.

But I am thankful for stirrings of health. A low hum of voices are melding, working, building.

I’d like to ask you to pray. Pray for the speakers and attenders for the conference on mental health this weekend. Pray that churches will awaken through this effort. Pray for people in your life who fight mental illness.

And continue to pray for the battle in general. I’m raising my hand. I need your prayer too.

“Thank you for sharing your story about depression with us,” a woman said to me last week after I spoke at her church.

Her words stirred up tears in my eyes. How do I respond? This is all so personal and scary and needed. I mumbled something quietly about sharing for God’s glory.

As I’m able and when I can, I am raising my hand when it comes to mental illness. Please, God, let it glorify you.

Amen.

WORLD DOWN SYNDROME DAY – Every story counts

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The theme I’m embracing this year for WORLD DOWN SYNDROME DAY is simple.

Every story counts.

I admit, the idea came to me rather selfishly at first. And it’s just me. There’ no bandwagon. I don’t have an organization behind me. I haven’t teamed up with a bunch of different bloggers. So my theme probably won’t go out into the world that far. That’s okay. The message rings true still, to me.

One of the biggest push backs I’ve received (both in and outside the disability community) regarding my book Sun Shine Down is that there isn’t a need for more memoirs about Down syndrome.

“Oh, goodness, another memoir about Down syndrome.” one reviewer said. I could just feel her rolling her eyes as she wrote the words.

Poor reviews are expected in the writing business. The ones I’ve received have actually made me feel legit as an author.

But as I got to thinking about the sentiment ‘oh, goodness, another memoir about Down syndrome’, I realized what really bothered me about it. I’m a story person. There can never be enough stories in the world.

Moreover, every parent of a child with Down syndrome has a story.

And every story counts.

I parent two girls with Down syndrome. My daughter Evangeline has a dual diagnosis of Down syndrome and autism. Sometimes, and I feel bad about this, I tend to downplay her story a bit because, frankly, her story, our story, can be difficult. We are struggling with autism. She is nonverbal and sometimes aggressive. Should I really use all that to fan the flame of Down syndrome awareness?

Yes.

The answer is yes.

Because I embracing the notion that every story counts.

I struggled at first with my other daughter Polly’s diagnosis of Down syndrome in Sun Shine Down.

“I know of other mothers who have children with disabilities and right away they loved them and decided to fight for them. That’s not my story.”

I go on to say in the book that my arriving late to the party of Polly’s love is one of my greatest failures. But regardless, again, it is my story. I embrace our sloppy, beautiful, strange, unconventional, redemptive story. I’m thankful for it. I’m thankful for both of my girls. And I am happy to say that Polly and I are completely in love.

Every story counts.

-The parents who grieve the diagnosis.

-The mom who doesn’t give Down syndrome a second thought and gets busy with loving her child.

-The dad who still might, if he has a moment of honesty, struggle with his daughter’s disability.

-The parent who starts foundations and leads buddy walks in honor of her child.

Do you agree?

Then share your story. Leave a comment below that answers the question “When I was first told my child had Down syndrome I…”

Hop over to my Facebook Page. Through out the day there will be pictures and thoughts from parents in their own words about their stories of Down syndrome. I’d really appreciate it if you shared them with friends and family via whatever social media channels you desire.

Every story counts.

Because every person counts.

Every child with Down syndrome matters, regardless of ability.

And today I celebrate our stories, and my two beautiful daughters, who teach me daily about life, faith, and love.

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