Your Child's Journey

wisdom for the big steps little children take

You are here: Home / Archives for Diane Constantine

What to Expect When Your Baby is Born with a Disability

By

from: Mamapedia Voices   January 16, 2014

by Meria Nichols of “With A Little Moxie”

Sometimes it seems when you are pregnant that the world is simply brimming with people that are eager to tell you exactly what to expect with your baby.

They load you with brightly colored blankets, impossibly tiny clothes and cheerful, precious hats that will keep your little one warm, fashionable and adorable. Advice is also given. In spades. What to do during birth, what to do after birth. What to expect with breastfeeding, with sleepless nights and baby’s screaming. How to help your body heal after the baby comes. How to help the baby grow, develop, thrive and realize his/her maximum brilliance.

But what happens when your baby isn’t what you expected she would be? What happens when your baby isn’t who everyone said your baby would be?

What happens when you have a baby that is born with a disability?

As a mother with a disability (I am deaf), and as the mother of a child with a disability (my daughter has Down Syndrome), I offer you these 5 kernels of truth as I have experienced them:

1. Your baby is your baby first.
Your baby is always your child first. His disability – whatever it may be – is no more a definition of who he is or will become than the color of his eyes or hue of his skin. He will always have more in common with you than with anyone else, regardless of his disability.

2. Your baby is your baby: you know her best.
When you are not familiar with disability, it’s easy to fall into the trap that experts know best. And sometimes they do – complicated medical procedures, for example. But not everything they say needs to be taken as if it’s the Holy Grail.

When my daughter Moxie was born, all of the experts told me she was losing weight and my milk was not coming in because of her extra chromosome. They told me babies with Down Syndrome have a hard time breastfeeding, her latch was weak and so forth (yet they never checked). I couldn’t understand it because she was chomping down on me – nothing felt weak with her latch! And she was a strong infant; there was absolutely nothing sickly or unhealthy about her. It turned out that some placenta had been left in me. One of the early warning signs of placenta being left in after birth is milk not coming in. But no one thought to check because of Moxie’s Down Syndrome.

The point is: listen to your gut. Do your own homework. Talk to other parents and figure things out for yourself. Beyond being safe with your child and her health, you really are the person who knows her best. Listen to your intuition on what your baby needs!

3. Go out and connect.
Grieving for the child you thought you were going to have is very typical. Being scared and feeling a plethora of negative emotion is completely normal when you have a child with a disability. We live in a world that is not always kind to people with disabilities and we know it.

Reaching out and connecting with other parents is one of the best things you can do. Learning about new communities – both online and in person – will help you in more ways than you can count. It will give you support, ideas, a space to talk. It will be a space that will hear you in ways you need to be heard – especially in the beginning.

4. Begone, Dr. Google!
There is a fine line between understanding your baby’s disability and scaring the daylights out of yourself. Beyond having a grasp on your baby’s disability, it’s advisable to stay away from Googling too much about it until you have gone through your grieving process (if you have one). Get to know your baby first so the information can be taken with perspective.

Too much information, too soon, usually hurts more than it helps.

5. It’s going to be okay.
It’s not what you expected, but it will be okay. In fact, it’s probably going to be way more than okay; it’s going to be wonderful! You are going to fall in love with your baby, and you will marvel that you were ever upset about the disability.

No, really, you will. I promise. So just relax for a while, revel in the newness of your precious little one, delight in her existence.

It’s really going to be just fine.

Meriah Nichols is a third culture kid, former missionary child, deaf Mama to three. She is currently traveling with her family from San Francisco to Argentina, along the Pan American Highway.

Decisions and Choices

By

Happy New Year! I hope you had a good Christmas and New Year’s season.

I’ve been thinking a lot about making decisions. I’m not talking about resolutions. Those mostly get broken before we get out of bed on January 2.

I’m looking at choices instead of resolutions. A resolution is what you intend to do. A choice is what you actually do.

Life is made up of hundreds of choices every day. Many of these choices are simply instinctive. Those are the ones we make without even realizing we made a choice. We get in a pattern but may never recognize it is a rut. Ruts resist change. So getting out of a rut takes deciding to change and then opting for different choices.

We start with a decision. A decision is a process of analysis that cuts off some options.

Here’s how it works. We make a decision after considering the results we want and consequences we want to avoid. The decision makes certain options no longer available to us.

Let’s take an example from parenting. We decide we want children other people will like. That’s a good decision. It’s nice when we like our kids, but it’s even better when others like our kids. The consequences of leaving this to chance mean our kids may or may not be liked by others. Making a decision means cutting off some options. For instance, letting them stay up so late they are screaming and running around when our neighbors would like to sleep, or giving them whatever they want, whenever they want it so they become tyrants.

Now we get down to the nitty gritty. We make a decision in a sane moment of contemplation, yet we make the choices moment-by-moment. Neglecting to consider the little choices means we allow ourselves to slip away from the good decision we had made.

So my personal challenge is to look at my behavior and consider my choices. I have made some wonderful decisions in the past. I have decided to grow as a Christian. I have decided to be a loving wife. I have decided that people are more important than tasks. But often my little choices do not support my major decisions. I may choose not to read my Bible one morning, thinking I’ll do it later in the day. Or I choose to get irritated and snippy with my husband. Or I choose to not make a phone call to someone who would appreciate even a few minutes of my time. Instead, I dive into a new project with abandon.

It’s much easier to just do what comes naturally, but many times those natural responses do not reflect my decisions, but rather my selfish desires.

I am making a conscious effort to look at my behavior as choices. As soon as I realize I made a bad choice, I’m consciously choosing to do something that agrees with my decision. It is a tiny step to seeing my big decisions bear fruit.

Will you join me in looking at your choices? Let’s see if we can’t be closer to our goals at the end of 2014 by making this small change in our thinking.

Christmas 2013

By Leave a Comment

Christmas has always been a special season for me. My mom used to buy Christmas gifts all year and squirrel them away. Each year she selected one gift to be the gift. It was for only one of us, but we were all excited about what that gift would be and whose it would be.

We woke up Christmas morning with a tree that was decorated over night and surrounded by gifts. We took turns opening the gifts one at a time so everyone could enjoy the thrill of seeing what each one got. Then the moment would come for the gift to be given and opened. It was always perfect! We all celebrated!

Christmas was about giving. We always found some way to make someone less fortunate than us happy too. A few years, we went to an orphanage and brought Jean home to share our Christmas. We each bought her a gift from our allowance and we tried to make her feel like a queen for the day. Some years we bought gifts, wrapped them, and took them to some family who lived in the poor part of our community. We always took food, as well as gifts.

Most of all, I remember the Advent Wreath and how the story of the first Christmas came alive to us little by little through the month before Christmas.

Here are some of the things we have practiced in our own family that you might like to incorproate into your own celebrations:

1. Do not go into debt for gifts. When we didn’t have enough money to buy expensive gifts, we bought ‘meaningful’ gifts. Sometimes the nicest gifts were the homemade coupons we made offering our services to those we loved that could be redeemed throughout the coming year.

2. Make the emphasis giving rather than receiving. Help your children learn to enjoy the delight their gifts give to others.

3. Find ways to reach out to those in need during the season. Get your kids involved in Angel Tree or Shoebox or some other outreach to the needy. Have them help buy, pack, and wrap the gifts; and when possible deliver the gifts. These encounters really leave a lasting impression on youngsters.

4. Remember to tell the story of Jesus’ first coming to our world so it becomes a part of their foundational beliefs. Then teach them to anticipate his second coming, too. The hope of heaven helps us through rough times we will face.

If you have stories of your Christmas, past or present, that you would like to share, please email me at: Diane

May you have a blessed Christmas season. Delight in the preparations and may your faith be contagious!

Blessings!
Diane

The Power of a Look

By Leave a Comment

I’ve been reading a book by Elisabeth Elliot called, Let Me Be a Woman. It is a compilation of letters she wrote to her daughter before her marriage. In one chapter she tells a story about a time she was too busy and her daughter knew it. Here’s the story:

“When you were small there were always Indians around us, and I had many things on my mind in the running of a jungle mission station. I was sometimes tempted to pay little attention to your small needs. You knew it at once. You knew whether it was an opportune time to get away with something. You would try it, and my preoccupied, “Val, leave that alone,” you would ignore. You knew you could safely ignore it because my attention had already turned back to the thing at hand. I learned very soon that I had to give my full attention to you when I spoke. I do not mean that I gave you my full attention twenty-four hours of the day. I see mothers who very nearly accomplish this and they do it to the destruction of their poor smothered, harried children. I mean that when a matter needs the mother’s attention it must get her full attention for that moment. I had to turn from my work and turn to you.

“Your eyes would open wide when I stopped what I was doing and looked at you. Slowly, slowly, your hand would drop when I said your name. In the moment of pause and silence you assessed my seriousness. Either I meant it or I did not, and there was no dissimulating with you. You knew which it was and acted accordingly.”

I experienced the same thing with my children and now again with my grandchildren. That look says, “I see you and what you are doing. I have something to say about that and I expect you to listen and obey.” That look has some important components that I want to talk to you about:Your attention, your authority, and your child’s development. [Read more…]

A Song Louder than Regret

By Leave a Comment

We know we can’t possibly cherish every moment.

We know it’s not realistic to neglect our life responsibilities to soak up their every word and every expression.

We know that telling ourselves to savor every stage of their childhood is just setting ourselves up for failure.
So what do we do? How do we realistically live life now to avoid the pain of regret later?

And that’s when I looked into the rearview mirror and saw my daughter’s chocolate brown eyes staring back at me. She was still singing at the top of her lungs, but the song was half over. I felt a sudden urgency. “Stop thinking about ‘what if’ and sing! Sing before the song ends!” my inner voice pleaded.

So I opened my mouth and joined in.

“When I’m gone
When I’m gone
You’re gonna miss me when I’m gone
You’re gonna miss me by my hair
Gonna miss me everywhere
Oh, you’re gonna miss me when I’m gone.”

Anna Kendrick’s “Cups”

Surprisingly, my daughter didn’t give me an exasperated look.

She didn’t roll her eyes and beg me to stop.

She didn’t chuckle and say, “That sounds terrible, Mom!”

My daughter smiled and kept right on singing.

[Read more…]