Wordless Wednesday

Sleep study

Reverse Comparison

I often read posts on my online support group from moms comparing their little ones with Down syndrome to typically developing kids. Today, I want to reverse that and compare my typically developing baby with Eon at the same age.

Keturah (KJ) is 7 weeks old. She is just starting to have a longer (up to 6 hr) stretch of sleep at night. Eon was sleeping 12 hours straight at this age.

To fall asleep, KJ needs to be nursed, rocked, jiggled, and shushed. Eon needed to be laid in his crib.

On car rides, someone needs to sit next to KJ and constantly stuff her pacifier back into her mouth. Eon slept or watched his toys quietly.

When I'm cooking dinner, someone has to have KJ duty and walk her around the living room to keep her from wailing. Eon sat contentedly in his bouncer seat for 45 minutes in the kitchen with me.

When being held, KJ's whole body seems to be tense, like she wants to be moving. Eon just melted against my chest.

Don't get me wrong, I LOVE this baby with all that is in me. She is a blessing. But she is very high maintenance. I worried about how I'd cope with a "typical" child after enjoying the blessing of a baby with Down syndrome. The answer is: not very well. I try not to compare her to her brother, but I'm not very successful. And they say Eon is the one with special needs. LOL!

Oddities

In researching Down syndrome after Eon's birth, I discovered the general consensus was that he would be "more alike than different" (from typical kids) and that he would just learn to do things a little slower.

While those things are certainly true, I'm discovering there is a little more to it than that simplistic explanation. I expected that he would take forever to learn to crawl, walk, feed himself with utensils, etc. Those are things my typical kids struggled a bit to master. I was right. We're still working on utensils.

There are also things that I did not anticipate that he struggles with. He has been working in PT on sitting in a low chair or stool. He loves to sit on things his size, he just can't seem to figure out how to do it. He approaches the stool, and rather than just turn and sit, he tries to climb onto it from the front. That doesn't work. After several attempts, he generally ends up straddling it. I never noticed my typical kids learning this skill. They just knew it.

The wonder PT, Jill, is teaching him to walk backwards to sit down. Which is a great idea...except Eon generally sits about a foot in front of the actual chair. After he sits short of the chair, he turns, surprised to see the chair behind him. (Terrible mom alert: I laugh every time. It is just too cute and I can't help myself!) You'd think this would be terribly frustrating, but he just gets up and tries again.

Another thing that he cannot seem to master is getting off the bed. We have a king-size bed and he has found ingenious ways of getting onto it. His favorite is to push the desk chair over, climb onto that and then onto the bed, but he's also been known to stack books into a pile to climb on, too. Getting off is a whole 'nother thing. By the time he's ready to get off the bed, someone has invariably moved the chair. For almost an entire year, we've been telling him, showing him, helping him to "turn and shimmy" off the bed to the floor. Sometimes, he actually does it, but usually, he just sits and whines until someone rescues him. Not sure what's up with that.

I also kind of expected that once he "got" something, he would have it mastered. That was true of crawling and walking (although his balance isn't that great, yet), but not at all true of speaking and signing. He gets a word and will use it frequently and correctly for several weeks only to "lose" it and never speak it again, or at least for a long while. We have seen "doggy", "ball", "Micky", and "book" just disappear. It is baffling and beyond frustrating to me. The signs that have disappeared seem to reappear much more quickly, although I haven't seen "again" for several weeks.

Those little quirks aside, he is doing great! He understands almost everything and follows commands really well. He's starting to string 2-3 signs together to make "sentences". He is really in tune to other people's feelings and feels really bad when someone is upset. He tries to make them feel better. When his baby sister cries, he will go and get her blanket or get her pacifier (and put it on her forehead - cracks me up!) The other day, he accidentally hurt his older sister and he just looked devastated. He signed, "hurt", "Ellie", and "sad", then folded himself in half and cried.

Maybe it's the therapist in me, but I find the way his brain processes fascinating. I can tell we are in for a wild ride! :)

Pics of cuteness

Last day as the baby of the family.


Whoa! What's this thing?!?


Ahhhh. Good old therapy.



Baby sister decked out in Christmas duds.



Cheesy grin now given whenever he sees the camera.



Reflections. 2010 was a pretty good year.

Happy New Year, everyone!!!

Doubt, reposted

This is a post I wrote back in March. I revisit it from time to time because I need to. I wonder if there will come a time when I won't. In the meantime, I thought I'd repost it for anyone who missed it the first time around.

doubt

(It starts as a whisper, a tiny niggling in the back of my brain.)

Recently, I posted a comment on a site stating that I am proud of my son's designer genes, that Down syndrome is part of his charm, and that his chromosomal enhancement is actually kind of cool. The responses were less than stellar. "Is this a joke?!" "A birth defect isn't cool!" "A genetic accident isn't something to be celebrated...it's a tragedy." "That's like saying leukemia or other diseases are cool."

Birth defect......Genetic accident........Tragedy......Disease

Doubt

(A little louder now, more insistent, it pushes forward toward the front of my conscious mind.)

Eon just got over being sick. He was sicker than the rest of us......again. Sometimes, I think he's doing phenomenally well, but, sometimes, I notice things like him staring at his hands in endless fascination or seeming not to recognize his own name and I wonder. Is he fully there? How much is he really getting? How far can he go? What is his purpose?

Sicker.......Staring........Purpose

Doubt

(Starting to sink a little into the abyss of fear.)

Can I do this? I feel inadequate. The thought of being the mom of a kid with special needs is overwhelming at times. Am I doing enough? I feel like he just hangs out with us most of the time. I rarely do structured therapy with him. We're not doing flashcards or an early reading program. We play with him and include him in our lives, but is that really all he needs? Am I strong enough to deal with all the therapies, appointments, and advocacy?

Inadequate.......Not doing......Overwhelming.......Enough

DOUBT

("Help me, Lord," I whisper.)

(and then...)

For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be. Psalm 139:13-16

So God created man in his own image, in the image of God he created him; Genesis 1:27

You created......Wonderfully made.........Image of God

truth

(Yes, he is fearfully and wonderfully made. He was created in your image. You planned his days long before he was born.)

For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11

The Lord will fulfill His purpose for me; Psalm 138:8

Future.......Hope.......Purpose

Truth

(Of course! You, oh God, have plans and a purpose for both of us. How do I fail to see it sometimes?)

I can do everything through Him who gives me strength. Philippians 4:13

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 about my weaknesses, so that Christ's power may rest on me. 2 Corinthians 12:9

Strength......Grace......Power

TRUTH

(You are my source. You are my strength and my shield. I can do this through you and you alone. I am not strong enough, but I don't have to be. As always, you are.)

God Cares

Julia and her husband adopted Aaron from Ukraine this past year. He had been transferred to a mental institute a year before they were able to rescue him. In country, they ran into difficulties and spent a good deal longer there than they were anticipating. They visited Aaron everyday and began to get a very bleak picture of the lives of the boys who lived with him in the institute. She calls them "The Lost Boys" and has been shouting from the roof tops about their plight. Today, she reveals some good news, that only God could bring, about "her" boys. Please read the entire story here. ***Warning: You will need tissues. God cares so deeply for these children. Shouldn't we do the same?

Moments of Sadness

I never really went through the grieving process I was apparently supposed to have when I had a baby with Down syndrome. I did experience about 5 minutes of raw fear after getting the diagnosis before they placed him in my arms. Once I held him, I knew it was going to be okay. A friend of mine had been updating family and friends during labor. I called her about 20 minutes after delivery to tell her he was here. I said, "He's here! Simeon Israel. He's the cutest baby with Down syndrome we've ever seen." She responded that she was sorry and I said not to be...that he was perfect. I meant every word. I also joked that we needed to get one of those bumper stickers that says, "My child has more chromosomes than yours". Acceptance came easily for me.

I don't know if previously considering adopting a child with Down syndrome or knowing I had a high risk helped prepare me, but I never got depressed over it. I have had moments of sadness periodically, though. Very few and far between them almost two years into it, but sometimes they come out of nowhere.

I had one the other day. I was shopping at Aldi and I heard the familiar sound of an insistent "Uhhhh!" I recognized it because Eon hollers it frequently when he's excited or wants attention. I don't notice it much at home because all the kids are loud around here. But in the middle of a crowded store, it was noticeable. As I was bagging, I saw her. She was standing in line with her mother pretending to talk on a cell phone. What she was saying was completely unintelligible, but she was obviously enjoying herself. She looked to be about 7 or 8 and had on the cutest sparkly tennis shoes.

I never know how to approach people, especially if Eon's not with me, but I decided to go for it. I walked up and said, "I think we have something in common. My youngest son has Down syndrome." The mom brightened and asked me how old Eon is and we chatted for a minute. Then I asked how old her daughter is. I was completely unprepared for her response. "Sixteen," she replied. My heart dropped into my stomach and I hope she didn't catch the dismay I'm sure I wore on my face. I mumbled something to the girl about being a "tiny little thing" and that I liked her shoes. She didn't appear to understand me.

We chatted some more and she mentioned something about "the other little girl I watch that's a month younger than her"...

Another 16 year-old that needs a babysitter?!

You're probably thinking, "Duh. Of course a teen with Ds might need someone to watch them." I know that cognition varies with individuals and people with Ds function at different levels, but I guess I hadn't gotten that far. I was unprepared to see a young woman with Eon's condition still engaging in behavior that Eon currently enjoys (loudly vocalizing and pretending to "talk" on the phone). It threw me.

And, the encounter has stayed with me. I'm still trying to process it and my response to it. I just assumed Eon would progress beyond the toddler he currently is. He is so typical in many ways, I sometimes forget that he's behind in other ways. My expectations for him are high. Now, I wonder if they're too high.

As I was writing this post, Eon walked over to Keturah's crib, signed "baby" and then, "sleeping". I asked him if he wanted to sit in my lap and he climbed up. He's doing great and I am so proud of him! I just need to remember to take it one day at a time.