...And in the air, the fireflies, our only light in paradise. We'll show the world that they were wrong, and teach them all to sing along; singing Amen I, I'm alive. Amen I, I'm alive...

- Nickelback, If Everyone Cared

For All The Right Reasons Album

And I'm singing Aaa-ayyy-men, I'm alive!

William Leonidas November 12th, 2009
My only regret is that I cried so many tears while I waited for you.

"...I'll try ~ but it's so hard to believe. I'll try ~ but I can't see what you see. I'll try and try to understand the distance between the love I feel ~ the thing I fear ~ and every single dream. I can finally see it. Now I have to believe all those precious stories. All the world is made of faith ~ and trust ~ and pixie dust. So I'll try ~ because I finally believe. I'll try ~ because I can see what you see. I'll try, I'll try ~ to fly..."

Jonatha Brooke "I'll try"

Fear thou not, for I am with thee; be not dismayed, for I am thy God; I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness. Isaiah 41:10

Now the word of the Lord came to me saying, "Before I formed you in the womb I knew you, and before you were born I consecrated you..." Jeremiah 1:4-5

For Thou didst form my inward parts; Thou didst weave me in my mother's womb. I will give thanks to Thee for I am fearfully and wonderfully made; wonderful are Thy works, and my soul knows it very well. Psalms 139:13-14

Monday March 5th, 2010

So Why Stinkerie?

It's simple, really. It's the first thing I whispered against my newborn little Dumpling's temple as I held him alone for that very first time. "There's my Little Stinkerie." And all was right with the world as I brushed my lips across his delicate dewy soft newborn-pink skin and sniffed at his sparse smattering of downy soft hair. Corny and sappy, huh? I can't help it when describing my new Little Puppy. But don't get used to it - I have been told I am "irreverent."

Anyway, it just came out and he's been Stinkerie ever since. As well as Stink Pie, Stink Pot, Stinkey Pete, Little Stinks, Stinks, Puppy, Ducky, Baby, Baby Head, Baby Head Jenkins, Jack, Jack-Jack, Jackie Boy, Jax, Snork, Snorkis, Snorkle, Billy Boy, Billy Bob, Bobby Sue, Billy-Joe-Jim-Bob, Will, Willie, Willister, and the name given by my mentor turned friend Beth - Snake. When I write to her I call him either The Snakester or Slither! And of course, Dumpling, because he is my Little Dumpling - warm and soft and comforting. It's alright to combine comfort food with baby names, right? Have you ever watched the movie Where the Heart Is? If you have, you'll know why I mention this in my defense!

Long story short, you're likely to encounter any one or more of these names in a single post. Because I can. It's my blog!

Something to Consider

Bad decisions make good stories.

Something to Think About

With any pregnancy, there are concerns. With any child, there are worries. When you have a diagnosis of Down syndrome, you know what to worry about. You know what to look for. You have a plan of action. With your typical child, there is no limit to the things that can 'go wrong' or 'happen.' There's no place to focus your worry and concerns. 'IT' will always be out there, waiting. You'll always be on guard. Even when the child is 55 and has grandchildren. With Down syndrome we have a battle plan. With Down syndrome, there is a finite number of things that can go awry. With a typical child, there's isn't. It's a crap shoot. I'm sticking with the Ds and taking the other two back to the hospital for a refund.

Head Above Water

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Friday, January 7, 2011

Jack-Jack Attack

Every child everywhere, since the beginning of time has had one of those busy box things with the flaps that pop up to reveal an animal or character when the knobs and levers are twisted, pushed and slid sideways. About a month ago, I was tickled pink when Jack plopped two of the little flaps closed, on purpose, at baby class. Why I was so surprised that he could do this is beyond me. I'll have to examine that surprise a little closer, later. Anyway...about ten days ago, I texted Beth, his OT, that Jack was slapping all the little boxes closed now in one sitting. She'd just been here an hour previously, and he wouldn't close any of them for her. Now he was systematically closing them all.

When Laurie from The Junior Blind was here Wednesday, Jack was really happy to show off this new skill for her! A thought was taking place about just exactly what is 'bugging' me about this new skill. When Anna was here Thursday, Jack showed his new talent off to her as well. Yeah, I know, kids master this skill all the time...so why am I going on and on about it? So you can all write back in the comments and tell me that I'm worried for nothing and that I'm not seeing what I think I am. The busy box phenomena is just the gel that pulled my worry together.

So here it is. When Jack had his first success at this task, he was being hand-over-handed by Beth and they closed the middle flap and then the second to middle flap, with Jack doing the actual closing. Now that he does it at home, he starts with the first flap on the left, every time. Then he closes them in order. Every time. It looks like this: he's on his hands and knees, or his belly, reaches out, closes the flap, gets flat, rolls onto his back and away, then rolls back to his belly or hands and knees, then closes another flap, in order. He repeats this whole process of close a flap, roll away, roll back, close a flap until they're all closed. If I put the toy in front of him sideways so that the other end is presented first, or even backwards with the flaps closest, he will always grab it by the handle and turn it around so it's facing him properly, then proceeds with the first flap. Always. If I hand-over-hand him to push down a different flap, he pulls his hand away and rolls off. Loses interest. Laurie and I, and then Anna and I tried to put resistance on the flap so he couldn't close it, thinking that he might move on to a different flap. Nope! He pulled his hand away and rolled off and would not be engaged with the toy again until hours later, when he could do it his way, unhindered. I am waiting for his next baby class on Wednesday to see if he plays with Beth's busy box flap toy the same way.

So why am I worried? Clearly he's got some problem solving skills at his young age if he consistently takes the toy by the handle to orient it to himself the way he prefers. Clearly he can process tasks in order. It's the have to of doing them in order that is bugging me. And the organised activity in between. Because he does it this way every single time. And I'm only bringing it up because I've noticed some similar activities where he will roll away and roll back before continuing. The constant motion between activities. The ongoing fascination with his left hand. The way he will seemingly not hear someone calling his name while sitting right next to him. The sudden aversion of most things solid food. His new 'likes' are things that are really cold from the fridge. He will tolerate a few bites of warm table foods. Nothing room temperature. Oh yeah, and the fact that we already have two children on the autistic spectrum. Research is limited regarding the co-morbidity of Down syndrome and autism because the two disorders have only recently been recognised as coexisting, but where some studies find the dual occurrence as high as 10%, most studies have autism occurring between 5-7% in the Ds population above the occurrence in the typical population. So am I just borrowing trouble where there is none? Someone? Anyone? Please?

On the one hand, any parent of a child who has Down syndrome already knows it's not a bad thing...quite the contrary, in fact! I love this little baby more than my own breath! But on the other hand, even the suggestion that he could have autism as well is...well, it's just not fair, that's what!


Becca said...

I'm certainly not an expert here, but kids, especially little ones, love order - it helps them feel that they are in control of their environments. People with Down syndrome often have that tendency, too, I believe - a bit of OCD. Doesn't autism not show up until much later, anyway? I wouldn't worry! It sounds pretty typical. And as far as him not responding when someone's sitting next to him calling his name? My stubborn girl has done that many-a-time. :-)

Tracy said...

Ha! I completely forgot that people with Down syndrome tend to have some OCD. I've read some Moms who say their children have more than a little OCD. Thank you! Your little girl is darling! Do you blog? I'm going to click on your picture to see if it brings me to a blog!

Tracy said...

Becca....Hahaha! I already follow your blog! Duh to me!

Elizabeth said...

I have to agree with Becca, sounds like OCD. As you know, not blessed with a Jack, but definitely a lot of ASD experience, and then some...
All my kids did this with their "Poppin Pals" in the beginning, some ASD, but all OCD. Do you remember #3 and the dinosaurs? The entire world would fall apart if they were not lined up largest to smallest! Jack is way to interactive, responsive, and with good eye contact to have ASD. Not to mention OCD runs in families, ummm~ Who is noticing, and obsessing on Jacks ordering? (hint ~ hint ~ smile). A little OCD is not a bad thing, we wouldn't be gifted in our profession without it!


Holly W said...

okay...breathe in, breathe out...
calm down...
for all you know Jack is being a stubborn little bugger...maybe he wants cold food because his gums hurt from teething...maybe he's doing that pattern because that's the way he learned it, and dammit, that's how he rolls. Maybe he's trying to control one aspect of his environment...maybe maybe maybe...
I would take the toy away for a week or so and then see what he does...maybe he's frustrated that you're trying to change the way he does something when it was you and the therapists that wanted him to do it in the first place...
ahhh...stress...isn't motherhood grand?

Tracy said...

Bits, I'd agree with you 100% about the social interaction and the eye contact...and then I'd offer up The Middle. He's extremely social and verbal and makes too much eye contact!