Category Archives: Down syndrome

Feeling stupid not generalizing

So this week, I had 2 typical experiences in new settings in close enough time, that they shined light on each other….

  1. Darin went to day camp and got in lots of trouble the 1st day. Then I figured out he didn’t have 1-on-1 support, that was added, and he was able to continue with daycamp.
  2. We tried putting Darin in a class at church, so we could listen to the sermon, and he lasted 10 mins… and Joel missed the rest of the service sitting in the hall with him.

And it clicked for me:
Church is the only setting where we try to put him in a class without 1-on-1 support, pretending in that setting he is typical.
We don’t do it at school, or day camp, or VBS.
But week after week, we are shocked it goes terrible at church.

Unfortunately, this realization was not accompanied by a solution.

Interestingly, the sermon at the church we visited today was about Act 6:1-13, where the 1st church had to address unmet needs within the church.

I wish this didn’t feel like a unique need that not everyone shares. I don’t want to be the one with the need.

What are other special needs kids doing within small churches?

Advertisements

Our adoption stories

Here are the stories of our adoption:

  1. When Darin joined our family
  2. Making adjustments for Darin
  3. Ode to Darin’s birth mother
  4. Missing Darin’s birth mother

Adoption in movies

One of my favorite thing in movies is seeing adoption as a subplot, not the focus.

I appreciate this since it normalizes adoption, decreasing the stigma that family is blood and adoption is weird.

Some of my favorites are:

But I recently saw a Facebook post by my friend Nancy that added another perspective to the adoption movie conversation:
20131123-120753.jpg

At first, I was confused. I also have an adopted child, and love Despicable Me.

But then I thought about Hannah’s experience of being in a orphanage.

I realized that while I love that society can see adoption stories in movie, parts of the stories may be too close to home for a child joining a new family.

Always good to gain perspective!

Relief in a realization

The special needs community’s perspective toward education is pretty unique. There is an ENORMOUS amount of pressure to be a legal guru in order to convince the local public school system to educate your child as well as possible. Many time, the same families who send all their typical children to private school invest tons of energy into mastering the public school.

Yesterday, I attended a conference where many of the breakout sessions focused on convincing your school to allow your child with a disability to be “included” in general public education.

I felt the familiar self-doubt creeping in:

Why am I not trying harder to win this fight to have Arabella & Darin get a free, appropriate public education? Why do I feel so much more comfortable with my children in private (even though non-inclusive) schools?

And then I felt relief, as I have so often recently, as I remembered something from Carole Joy Seid‘s seminar. I’m not sure how to repeat her whole thought, but basically it was that historically, public school was not the preferred choice – it was for those who had no other choice. Those with choices had governesses or mom’s as their one-on-one teacher.

I realize why I don’t wanna train & join this fight: I don’t believe MY children should be educated by the government.

And it’s a relief for me to realized this & quit feeling like a wimp.

I hope this doesn’t come off as judgement on anyone. This relates to my parenting of my children.

I am in the process of bringing all my actions into alignment with my values. I’m sure you are in the same process.

God is good.

This week, Arabella, my first born child, has spent the week in Texas Children’s Hospital (TCH). Our bulldog’s crazy sticking out tooth went into her finger, causing an infection.20130221-141608.jpg20130221-141625.jpg

Hospital-time leads to reflection.

  • For Arabella specifically, TCH is the place she came on her second day outside my womb, and remained for 25 days trying to learn to eat while her heart ran a marathon.
    Then she returned for a feeding tube to be placed (and replaced) at 3 months old.
    She had her heart repaired by the cardiovascular surgeons there at 6 months old.

    And here she is, 11 yrs old, and healthy for 9 yrs!
    That’s something to celebrate!

  • Regarding healthcare: this finger thing didn’t look like a big deal… Redness, puffiness, but not a lot else. But the doctors at both our Pediatricians office & in the ER know that hands can progress in bad ways, so they are fighting vigorously, aggressively, for the health of Arabella’s hand.
    That’s something to appreciate!
  • Regarding life: while it might seem inconvenient to sleep away from home, it’s a blessing to have 1-on-1 time with my daughter. Thankfully, my job is mega-flexible, my husband is super helpful, and my sons are compassionate & understanding.
    Those are all blessings.

It seems like “bumps” in life are good times to pay attention, be more alert to how life is really going.

I can see God’s blessings raining down on me!

20130221-143607.jpg
How about you?

My prenatal experience with Arabella

Recently, I had the opportunity to correspond with a lady who is pregnant with a child with Down syndrome, trying to make her choice to parent or abort.

I realized I haven’t written about my experience with prenatal information.

Here’s what I shared with this mom:

On my 1st ultrasound at 8 weeks, I had low amniotic fluid. So they did another ultrasound at 11 weeks. At that ultrasound, they measured for a LONG TIME , then made me wait to see the doctor.
Since Joel & I both needed to get back to work, & the ultrasound tech gave no indication of a problem, Joel headed down to retrieve our car.
The OB said the baby had a nucle thickening. This could signal a trisomy, the mildest of which was Trisomy 21, Down syndrome. She said that some trisomies are not viable with life especially on genes with lower numbers, so the baby might die before she was born. Or I might just want to terminate.
Then she left the room.
What I heard was, “Your baby is probably as good as dead.”
The doctor left me alone in the room for 20 mins while they worked in a referral to a high risk doctor.
I called Joel back from the parking lot, & tried to tell him what they said.

We left there in a fog. We didn’t go back to work. We went to separate rooms. I crawled under the covers in a dark room & mourned the loss of my baby.

Then Joel came in & announced my tummy with oil, praying for God’s hand to be on our child.

So 3 weeks later, I saw the meanest high risk doctor (perinatologist), who banged the ultrasound probe on my bladder & said, “they didn’t know what they were looking at. There’s no nucle thickening.”

We did 2 more high risk ultrasound with another high risk doctor.
We changed to a midwife who understood we didn’t want a test that would endanger our baby, & if something was wrong we wanted to be in a peaceful setting during the birth & death.
We named her as soon as we found out her gender, so we could love a baby girl vs an “it”.

And only once that I can remember, Joel said, “Do you think about if the baby will be born different?”

Sidenote: the mean doctor was stupid! Between 1st trimester & 2nd trimester, nucle thickenings dissolve – so she discounted the sign, I think because I was only 24. It doesn’t matter cuz the other ultrasounds were still checking her heart & organs.

All this happened, even with how God had prepared me for being Arabella’s mom. The 3 summers prior to her birth, I was a volunteer then counselor then director at the most amazing camp in the world, Camp Barnabas in Missouri.
My 2nd summer, I had 1 week with 8-11 yr old intellectually delayed girls, most of which had Down syndrome. They were my favorite people I had ever met. I also had a week with an adult camper with Down syndrome who I fell in love with.
In my prayers, I said to God, “if you have a spare baby with Down syndrome, I want it!”

I don’t believe I told God what to do. I believe this was a fulfillment of Psalm 37:4 “Take delight in the Lord,and he will give you the desires of your heart.”
He gave me desires that matches the life he had in store for me.

So when those ultrasounds were read, Down syndrome wasn’t my fear. My fear was the unknown, the other things the doctor had said (and not explained!)

Can you help?

Little Josiah, mentioned in my previous post, is being united with his forever family, the Jobes, right now.
And while they are in Eastern Europe, they are working on bringing another DS angel into their family.

Watch Josiah (Cohen) with his mama

Watch Josiah (Cohen) with his mama

 

Consider helping them rescue Linden!

Click on this picture to help them rescue Linden!