How I can best advocate for my kids with special needs

(A version of this post first appeared on my talented friend Addie Zierman’s blog. I’ve changed it up a bit to post here because it still rings true for me… it often does.)

evichka

 

How I can best advocate for my kids with special needs

(This was writing back when the most recent Chicago winter wouldn’t end.)

It’s nine o’clock in the morning. I spoon leftover chili into my mouth and look out a smudged window full of fingerprints. My four daughters are at school after days at home because of icy temperatures that managed to fluster even the most tenured Chicagoans. The house is still, quiet. My dog Scout licks her lips as she naps in a chair next to me.

I’ve been wanting to write about advocacy, about the special needs mom, and how to be inclusive to her and her child in your community. But today, I don’t want to write about that.

I have two kids with special needs. Polly has Down syndrome and a stroke and seizure disorder. Evangeline (adopted from Ukraine) has Down syndrome and autism. I write and speak and educate about disabilities and own the proverbial advocacy pompoms. I often don a cheerleader outfit when it comes to my girls.

But not this morning.

Today I’m not throwing my pompons in the air to get your attention. I’m not thinking about inclusivity. I’m thinking about survival. I’m not thinking about changing a community. I’m wondering how in the hell I can stop my seven-year-old from breaking up the floor boards in her bedroom and eating them.

I’m not a cheerleader. I’m just a deflated mom sitting in her pajamas, eating last night’s dinner for breakfast.

Today I can’t really advocate for my girls on a large scale.

But I can do this…

I’m going to love my children.

As I spoon lukewarm chili into my mouth, a thought occurs. Perhaps the best way to advocate for my girls is by loving them well and enjoying the crap out of them. And any mother will tell you, loving our kids isn’t always easy. It takes work. Maybe I should ration what little energy I have in the trenches of early motherhood not for big groups of people but for those in my charge. Mother Theresa said “Never worry about numbers. Help one person at a time and always start with the person nearest you.”

The person nearest to me…

“I like you best,” Polly says to me first thing when she wakes up in the morning, her nose all bunched up as she giggles. Her arms encircle my neck.

Advocacy on a larger scale will happen. I’ll get over my bad mood, apply chestnut colored lipstick to my lips, and stand in front of a group abolishing myths and assumptions about disability with Hallmarkisque remarks and funny stories about my kids. I really do want the world to change. I want everyone to see value, purpose, and dignity in people who are differently-abled.

But I realize that as a frazzled mom of four girls, the most important work I should attempt to sustain is to love my children, thus showing the world not only that kids with special needs can be valued, respected, and loved, but that they are.

A Down syndrome diagnosis shouldn’t be about luck

heather2

(Friends, please help me welcome Heather Bradley today on the blog… Thank you, Heather, for your tireless efforts to help every family have ‘good luck’ when they get a Down syndrome diagnosis.)

A Down syndrome diagnosis shouldn’t be about luck

Sometimes life can stop you in your tracks.

“Your daughter is showing signs that she could have Down syndrome.”

When our daughter, Isabel, was born in August 2012, those were the words my husband and I heard.

At first, I felt blindsided. Down syndrome seemed to push me into a pit and I had no idea how to get out.

However, I did get out.  You see, Isabel has Down syndrome and today I’m perfectly happy about that.

But in looking back, now I see that I was fortunate.

I was fortunate that our OB, nurses and pediatrician never once said they had “bad news” or talked about Down syndrome in a negative way.

I was fortunate to have received a large packet of up-to-date information so I could take a crash course on what Down syndrome is and isn’t.

I was fortunate to have a husband who told our waiting family members our suspicions that Isabel had Down syndrome so I could avoid talking about it until I was ready.

I was fortunate that our 5 and 3-year-old daughters got to celebrate the birth of their new little sister with no understanding of fear and worry.

I was fortunate that we only heard “Congratulations” and “She’s perfect”.

I was fortunate that we had good health insurance and the additional medical bills weren’t a burden on our family.

I was fortunate that a Down syndrome parent support group was relatively close to where we lived.

I was fortunate that I found another “family” of new mothers in a Facebook support group.

A diagnosis story

Everyone has a diagnosis story. Mine is a fortunate one.  For this, I will forever be grateful.  However, I see areas where I could have used additional support, information and connection.

I remember feeling overwhelmed looking at the wealth of information on the national organizations websites because I wasn’t ready to see adults with Down syndrome or think about inclusive education.

I remember those first few nights in the hospital when I could have benefited from the connection of knowing another family impacted by Down syndrome.

I remember those first few weeks when I could have used professional guidance as I watched our newborn daughter struggle to gain weight while breastfeeding.

What about those who are not as fortunate on this new ride?  It shouldn’t boil down to the luck of the draw.

These needs prompted eight mothers to start the Down Syndrome Diagnosis Network.  Our goal is simple; to ensure every parent has a good start on this journey.  Check us out.

Follow us.

Join us on Facebook, Twitter, or on our website.

heatherbiopic1

 

Heather Bradley is President of Down Syndrome Diagnosis Network, a Non Profit Organization that launched this past March.  She and her husband, Mike, live in Stillwater, Minnesota. They have three daughters and a yellow lab.

Listen to me on ‘So Here’s the Thing’ podcast with Kathi Lipp

the sun will shine again kathi Lipp

Listen to me on ‘So Here’s the Thing’ podcast with Kathi Lipp

Friends, today I am on a podcast called ‘So Here’s the Thing’ with Kathi Lipp about my book, what we do when life throws us curve balls, and what friends and family can say when someone they love has a child with a disability. I’d love for you to check it out and share it with others.

Here’s what Kathi had to say about our exchange:

“Just when you think you have this life thing figured out, here comes a major curve ball that rocks your world. How would you react? How would your faith be tested? Gillian Marchenko gets real on the podcast this week on how she dealt with the birth of her third child and the diagnosis of down syndrome. http://www.kathilipp.com/podcast/107-when-life-throws-you-a-curve-ball

I’m also giving away a copy of the Sun Shine Down there.

Leave a message on the podcast site for a chance to win.

And Click here to stream the podcast… 

Thanks!

Oh, and I’m very sorry about my nasally voice.

She lives hard and well, and falls asleep fast

Sun Shine Down Polly hug

She lives hard and well, and falls asleep fast

We’re lying in bed together just before she goes to sleep. She has her arm slung over my body. We look at each other. Face to face. Just the two of us. I start singing a song and Polly joins in even though she doesn’t know the words. I sing, and she sings, and her relaxed attempt at joining in without knowing what she is doing and without realizing she should care sends a tickle down my throat. I break out into laughter and she joins in with that, too. We laugh until we can’t breathe. Tears stream down my face. Her smile is as wide as a waxing moon. I stare at her beautiful almond eyes and think, who would want to give this up?

They say that moments make up our lives.

If that’s true, then I best remember the good and the bad.

polly car22

The bad: me looking away at her diagnosis of Down syndrome, her standing and falling over way past when she should be walking, head shaking stroke in the middle of eating pancakes at Bob Evans, brain surgeries, her hand wobbly as she attempts to write her name, kids doting on her at school and then walking away to talk to their ‘real’ friends, a little girl following us at the park asking “What’s wrong with her?”, and Polly, smiley, happy Polly struggling herself as she grows and attempts to figure things out. “Kids don’t like me, Mom. I’m different.”

But there is more to the story. Because for all the bad moments, there are a million good.

farm2

The good: jumping out of bed every morning, “What’s going on today, Mom?” ready to accept the answer with joy and vigor, her sisters teaching their classmates about Down syndrome, Polly thanking the nurse after a shot, her hard earned walk turning into a run, her body stopping and taking a deep breath when frustrated, the girls from her class coming to her cooking birthday party, her dash up to the front of the church to join her dad, hand raised and all, in the benediction, bothering her big sisters just like sisters would, getting up and singing to an auditorium of people, looking out for Evie when she is sad, her usual greeting of a smile and a hug regardless if she knows you or not, her little voice praying The Lord’s Prayer with the rest of the family, ‘Give us this day or daily bread,’ her little hand warm on my cheek, “You are my best friend, Mom.”

Moments make up our lives, right?

Then I have to remember that the bad is just life. The bad moments have a purpose. The bad make the good that much better.

Polly’s good moments resoundingly beat out her bad. Oh, of course she is human; mean and selfish and sneaky. “Polly, are your toys cleaned up?” “Yes,” she lies, happily running on to her next activity.

But also, there’s this: she is a bell that rings daily. She was made to exude sunshine. She does her job well.

Polly ringing the bell

Seconds after we are crying from hilarity, she is fast asleep. She’s been known to fall asleep mid-sentence.

She lives hard and well, and falls asleep fast.

What more could a mother want? I must remember moments like this.

Moments make up our lives.

Why I tell my kids about my depression

A sculpture of the mourning woman. Old graveyard.

Why I tell my kids about my depression

I guess the short answer is: they already know about it anyway.

I have four girls. I have depression. One of my most serious episodes occurred at the end of 2011 into 2012. At some point during that time, I basically gave up on life. It’s hard to admit as a mom, and also as a Christian, but I stopped functioning. I found myself in and out of bed, sometimes up to a week at a time, for months. Unless there was something I absolutely had to do, I was locked away in my room, sleeping or watching television.

Before 2012, my major depressive episodes occurred mostly around the birth of my kids. So the girls were younger. They didn’t notice as much, And I liked it that way.

But two years ago, my children were 11, 10, 6, and 5. The older girls, obviously, knew something was up with mom. All of a sudden I wasn’t making their lunches, picking them up from school, participating in family prayers, washing their clothes, or kissing them goodnight at bedtime. Their mother was no longer home, although I spent the majority of my life those months in our house.

Since then, as I am able, my goal has been health. I call it ‘working the system.’ There are several things I do to help me stay in the safe zone and away from the waves of depression that still threaten (and sometimes succeed) to knock me down on a daily basis.  I pray. I read scripture. I see a cognitive behavioral therapist, I take anti-depressants, I am trying to open up more to friends and family, and recently I started to use essential oils to combat moods.

I’m not healed. But I am healing.

But depression lingers as a family illness.

It not only affects me. It also affects my husband and my kids. One of my daughters is often angry that she has a mom who fights depression. Another doesn’t talk about it much, but spends a lot more time alone in her room. The little girls show their emotions, too. One wants to always be in my face, like if we aren’t touching, I’ll disappear. The other tends to ignore me after a bout of depression. I have to work to get back into her good graces.

So here is some ground work our family has set into place regarding my depression:

1. Our children are told when I am struggling.

Trust me, they can tell when I am having a bad day. But still, we say it out loud (and if I can’t verbalize it, my husband does it for me). I am a firm believer in words. If the spirit in our home is downtrodden and we don’t talk about it, then it becomes a bigger deal and scarier to our children. If we talk about it, depression no longer is the elephant in the room. By naming it and talking about it (according to the girls’ ages and level of understanding), it isn’t me against my family, but us together moving towards health. It also teaches my kids to talk about their struggles, too.

2. They are protected from it too, though. 

But we don’t tell them everything. Our job as parents is to protect them. There’s no need to go into the depth of my despair. They are not my confidants or my counselors. I’m the adult. I’m the mom. They should get to be the kids.

3. When I’m not actively struggling with depression, my children can tell me how they are feeling.

One of my daughters is a verbal processor. She needs to talk about things to get them out of her system. So our rule is that she can say anything she wants to me about my depression when I am well enough to hear it. “I hate that you have depression! You don’t do enough as a mom! Why can’t you just get over it?” I let her tell me what she is thinking, and pray that I have the wherewithal to stand it, and also to grow from it. I commiserate with her. “I’m sorry that my illness is so hard for you. It isn’t fair. I am trying to get better.” I don’t know if this is right or wrong, but I know she feels a lot better being heard. Her mom cares. That’s huge to her.

4. Life goes on when mom is struggling.

Yes, everyone has to pitch in more when I am not doing well. But generally, we want our kids to know that life goes on. My husband and I try to get them to all their school and social obligations. There’s still laughter in the house, and prayer. Sergei makes a point to spend more time with them if I’m out of commission. I am trying to connect more with all of them as I am able. The kids are learning (and re-learning, and re-learning) that life isn’t perfect. People get sick. People struggle. But life continues.

5. And God is still good.

We are believers in Jesus. I want my kids to see that in the midst of trials, God is still good, and he is still in control. It is work, I’m not going to lie, but I try to thank God for what he is teaching me through my depression… in the presence of my children. I want them to see that I trust God. And that they can trust him too.

6. Having a plan regarding my kids helps me.

Guilt and catastrophic thinking are two major components of my depression. “They hate me. I’m the worst mom in the world.” unfortunately are thoughts I combat often. Knowing that we have a structure in line for our kids helps. It helps me to feel like a better mom because I am doing what I can, well, to be a better mom.

If you struggle with depression or another mental illness, what are some things you are doing in regards to family health? I could use more ideas!