To the New Mother of a Baby with Down syndrome

To the new mother of a baby with Down syndrome

Meeting Her

I remember the feeling.

That first meeting with another family farther along the path of Down syndrome after the birth of our child with the same diagnosis.

I remember fear and fascination.

Fear of the child four or five years old who’s eyes mirrored my baby’s. She shouldn’t have looked like him. I birthed her. She should have resembled me.

Fascination, as I watched his sister play with him; he hit her, she cried, mother reprimanded. So common, so usual, so family. Things I thought we may have lost with the appearance of an extra chromosome.

I cried quietly for two hours while visiting this dear little boy and his family. They loved him. They cherished him. He played games, and communicated with his hands and with his voice. He chowed down on his lunch.

But still, I cried, because this path wasn’t my choice. At my point of weakness his mother appeared strong. I was an anthill. She, a mountain. I clutched my baby to my chest, each second teetering between relief and uncertainty.

His mother was gracious, tender. We whispered to each other as her children played nearby. ”I love him. Our life is good. Really. It is.”

Her smiling eyes met mine.

I looked away.

I loved my baby.

But that day I did not love Down syndrome. It was too big, too unknown.

Meeting You

Your husband contacted us last week. We scheduled dinner. The following days you kept popping up in my mind. A mother forced to move from a typical parenting landscape to some place new, a place everyone claimed was special. If you are anything like me, shocked by a culture wildly unknown and unsolicited.

“Mom, why are you cleaning up around the house, and making us all put on fresh shirts and brush our hair?” Elaina asked as I set the table. “You usually don’t make such a big deal out of dinner guests.”

Several responses queued on my tongue. Instead, in a brief moment of clarity, understanding that Elaina would learn more from the truth, I responded.

“Because, this family had a baby a few months ago with Down syndrome and I want them to feel welcome. I want them to see that we are happy, and that Papa and I treasure all four of our girls. I want them to see that we are OK.”

Your family arrived. We cooed over both of your children. I held your new baby in my arms. He smelled like sunshine.

His eyes mirrored my daughter’s.

I held your little one to my chest as our children played close by. Polly hit Zoya. Zoya cried which made Evie cry, and Elaina played on the floor with your son.

You probably aren’t excited to be a part of our special needs club. I have to tell you, though, welcoming you into my home was like welcoming family.

You teared up as you talked about your love for your son. “Down syndrome is something different. It’s a lot to take in.”

Oh, how I know.

I am a bit farther down your new path. Give yourself time to fall in love with your son, and to get used to Down syndrome. Breathe in his baby smell. Watch how his brother kisses the top of his head, how your husband gently puts him down to sleep, how your baby locks eyes with you when he eats. The weight of the world is in those eyes.

Today, you don’t have to love Down syndrome. Just love your son.

And know that we, other parents in this very special club, are here when you need us and that someday, you will be the one looking a new mother in the eye saying,

“Our life is good. Really. It is.”

-Gillian Marchenko

Tomorrow’s a ‘no’ day, a needed reminder in parenting kids with special needs

no day

Tomorrow’s a ‘no’ day, a needed reminder in parenting kids with special needs

Our daughter Polly will turn seven years old Friday.

She is fully included in the first grade of our neighborhood school, and is making expected progress according to her Individualized Education Plan formed by a team of teachers, therapists, and her parents because of her diagnosis of Down syndrome.

Polly is thriving in school. She loves the gym and her music teacher. Her academics are coming along, and although she struggles with writing and reading, she doesn’t give up.

This little girl who didn’t walk until she was three years old, now runs all over that school five days a week, up and down the stairs, around the classrooms and through the hallways, and deeper and deeper into the hearts of her teachers and classmates.

Recently, Polly has been having behavior problems at school; a little bit of pushing, cutting in line, not sitting on her carpet square during story time (read, sitting on top of someone else instead) …

So, I’ve started a system with her. Every day before she walks out the door , I remind her:

“Have a great day, Polly! And remember, make it a ‘YES’ day!”

Usually she is all about positive reinforcement and doing her best to please those around her. She giggles her okays as she heaves her huge backpack onto her shoulders.

A couple days ago, all the kids were piling out the door to school when I sang out my usual benediction:

“Have a great day, Polly! And remember, make it a ‘YES’ day!”

She stopped in her tracks and pivoted to face me.

“Ok, Mom, but tomorrow is going to be a ‘no’ day.”

My husband and I tried to hold it together, as we do daily with the one liners easily crafted by our funny little girl.

Once I shut the door behind my little family, wiped the tears of laughter from my cheeks, and relaxed my tightened stomach muscles from my gaiety, I started to think deeper about Polly’s words.

Tomorrow’s a ‘no’ day.

What an unknown concept to parents of kids with special needs. Saying no. Having a ‘no’ day.

One of my biggest struggles when it comes to parenting all four of my girls, but especially my two with Down syndrome, is the nagging ache of guilt that exists deep within.

Am I doing enough for my girls?

We didn’t do any therapy activities yesterday.

I really should find more speech therapy that takes our insurance.

They should be in swim class. They shouldn’t be having accidents anymore. 

And on, and on, and on.

“Mom, tomorrow’s a ‘no’ day.”

Oh, Polly, girl. How I need this reminder.

Parents, we need ‘no’ days.

And guess what? So do our children.

Let them be kids. And let yourself be a typical, loving parent.

The best thing you can do for your child is to love him or her.

I can’t think of a better way to love one another than to slow down, shake that guilt off of our hearts, and forget the woulda, coulda, shouldas. Let go of all those expectations of yourself. Let go of your expectations for your child, just for a day, an hour, a minute.

Tomorrow’s a ‘no’ day.

My daughter’s one-liner lands deep in my gut. I’m sure I will be pulling it out once in a while like a shiny, new pearl. I will apply the notion of a ‘no’ day to  the landscape of my life.

And as for Polly, well, if she actually decided to make it a ‘no’ day at school, she’ll be able to think more on the concept while she fulfills her five minute time-out when she’s back at home.

I’m sure the time will be well spent to reset her heart’s desire to obey, and we’ll all benefit from more Polly truths do to her pondering.

-Gillian Marchenko

10 Special Needs of Special Needs Parents

PHOTO BY CHRISTINE KAY PHOTOGRAPHY

PHOTO BY CHRISTINE KAY PHOTOGRAPHY

10 Special Needs of Special Needs Parents

As a mother to two little girls with Down syndrome, I need parents of typically developing kids to know something.

I have needs.

And yes, they may be a bit special because I have “children with special needs.”

Parental support from others in this crazy business of raising kids is essential in a mother or father’s life. All too often parents of kids with special needs are isolated because their experience is vastly different from others. It is painful when support falls flat, or if it doesn’t show up at all.

How do you act around your friends who have children with special needs, or around the woman at school you see at pick-up, or the dad standing behind you in line at the grocery store?

Here are a few suggestions for you:

10 special needs of special needs parents:

  • We need you to bring it up. Ask us our stories. It’s OK to ask questions. Most parents of children with special needs would prefer that others ask them about their child directly, rather than avoiding the topic. A smile or friendly “Hello!” is an easy icebreaker.
  • We need our kids to have friends. We want you to invite our kids over for play dates. If your child wants to have a play date with my kid or invite him or her to a birthday party, encourage it. Call the other parent and simply say, “How can we make this work?”
  • We need you to share your concerns. If you are concerned about something regarding my child, by all means, tell me about it. I may not have an answer for you, but I sure will appreciate a conversation about my kid. But we don’t always need your advice. Feel free to talk to us about a new therapy or diet you’ve heard about. Just be aware that we’ve probably already heard of it/tried it.
  • We need you to make an effort. Effort goes a long way. Educate yourself about my child’s special need. For instance, learning simple signs so that you can better communicate with a child who is deaf (and uses sign language) would be appreciated.
  • We need you to prepare your kids to hang out with our kids. If you know you will be spending time with my child who has a disability, talk to your child about it beforehand. Talk about behaviors, and ways your child can play with my child. Need ideas? Ask!
  • We need you to be considerate. Consider the age of the child with special needs. If it is a new baby or a younger kid, I may not be ready to talk about this parenting path I have found myself on. But that doesn’t mean I won’t ever want to talk about it. Follow my lead. I’ll let you know.
  • We need your tangible help. Offer to bring over a meal, or help at a doctor’s visit. I’d love it if you hung out with my kids with special needs one afternoon so that I could take my other kids to a matinee.
  • We need you to treat us like other friends, too. Talk about other things with me besides my child with special needs. Believe it or not, I may just want to gossip about Angelina and Brad and their globe trotting kids.
  • We need validation. Don’t dismiss my concerns by saying “oh, my typical child does that”, or my favorite “well, then my kid must have a disability too, because he/she does XYZ also”. When I open up about a struggle, I want validation, not to be blown off.
  • We need invitations. Don’t assume I’m too busy. Ask me out to eat or to a movie. I may not be able to get away as easily as other friends who don’t have kids with special needs, but I’ll go if I can, and if I can’t, your invitation will make my day. And ask me again!

What do you think? Agree with this list? Have something to add or omit, please do in the comments!

Also, if you’d like a PDF of this list to reproduce, GO HERE.

-Gillian Marchenko

Don’t forget to vote for Not Alone in the About.com Readers Choice Awards. You can vote every day until the contest ends March 19th! Finalist

Special Needs Parents: I give you permission

happy plain

Are you a parent to a child or children with special needs?

If so, I have a message for you today.

I GIVE YOU PERMISSION.

I give you permission to be tired.

I give you permission to cancel a therapy session.

I give you permission to feel weak.

When it comes to your child with special needs, I give you permission to allow a little grief to co-exist with other emotions like love and joy.

Why we need permission

Special needs parents, especially those of us who are people of faith, seem to make silent oaths for the sake of our precious children not to complain. We quietly resolve to make the world a better place for our kids, a place where they fit. A place where we fit.

And that’s right. If we don’t promote our children, who will?

But too often parents assume they can’t share struggles. No, struggles are bad, because people may think we don’t love our children. If we complain, people may look at our kids and only see disability, instead of the million other wonderful things that make them who they are. So we carry on, stuff down the difficult parts of parenting kids with special needs, and attempt to be what others assume are the best parents for our kids.

Friends. This is bad.

What happened to me when I didn’t think I had permission

I speak from experience. I parent four daughters, two of whom have Down syndrome, and one of whom was adopted from Ukraine in 2009.

After years of therapy, doctor visits, scary brain surgeries, hours of purposeful play, and the toil of bonding with my adoptive daughter, I hit bottom. For too long, I kept my struggles and fears regarding my children with special needs to myself.

And you know what?

I fell into a pit of depression. At one point, I didn’t even think Jesus could rescue me.

My life wasn’t working by just forging on, not taking care of myself, and not vocalizing “Hey, I love my children but this is really, really hard today.”

Giving permission

Some of the best ways I love my family and myself  are by verbalizing my struggles and asking for help.

So, today, I give you permission.

If you are struggling with your child who has special needs, I give you permission to say it outloud.

I give you permission to ask for help.

I give you permission to realize and own the fact that Jesus is with you in your pain. He knows how much you love and cherish your child, and he also knows that this path can be difficult.

When I open up about my struggles something amazing happens.

I cry “uncle,” and God whispers “peace.” “Gillian, what took you so long to give this to me?”

I call for help, and Jesus stands up on my behalf. “I’m here. I’m helping.”

I confess weakness, and He claims strength. “Oh, child, finally, you are starting to get it.”

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. 2 Corinthians 12:9

You know what? My vulnerability hasn’t caused my family to question my love for them and my tears haven’t resulted in judgement.

Asking for help, and sharing my struggles have brought a deep sigh of relief, a hope for the future, and the validation I crave.

I’m a special needs mom. I love my children but sometimes it is really, really hard.

-Gillian Marchenko

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