Saturday, January 10, 2009

This and That

Not knowing about the boys' diagnosis until Kyle was almost three had its benefits...I didn't analyze every little thing that they did.
With Evan, I frequently try to compare him to the older two, but it's kind of tricky, because I really didn't keep track of their development--I know the major milestones, but it's all the "other things" that I wonder about.
Here's one thing that I don't remember the boys doing: While humming, Evan will turn his head quickly side to side as if he were watching a fly going back and forth in front of him. This is definitely a "zoned out" time. Kyle used to hum and very infrequently still does, but we didn't get the rapid head turning to go along with it.
Hand-flapping--right now, I think the only time he does it is while watching TV, and he gets some air under those feet while doing it. I wonder if, or should I say, when, he will flap about other things? I wonder what would happen if we never watched anymore TV? Kyle still flaps occasionally; Matt has always been a wrist-twister, but once again, it's just about always when they are watching TV, although Kyle used to do it for anything that made him nervous or excited.
And crib jumping? I don't know what happened, but for the past 3 weeks, there has been, like, none. We went from 45 minutes before bed, 45 minutes during the night (at least), to suddenly none. We'll see if that last. I really think the fact that I was home for 2 weeks contributed to the sudden halt--he stopped on day 3 of vacation--but we'll see.
Oh yes, it's a cloudy, cold, dreary day. My mind is wandering. Speaking of the weather--the title of my blog: Sunny Day. Where did that come from? What is the deep meaning behind it? Drum roll-.-.-.-.-.-.-.-.-.-.----The sun was shining the day I started my blog, and while racking my brain trying to come up with a title, the fact that the sun was hitting the floor by the computer caught my eye. I didn't start the whole blog thing with the intention of "meeting" other people. I started because I have a teen-aged daughter who was always on the computer! At the time, she frequently blogged (now Facebook is more "her thing"--so I'm there now, too!), and I wanted to join her world--or just bug her a little--I really didn't intend on doing much with it (hence, the 6 months between my first post and the second). It was when I was doing an FX search and stumbled upon Fragilemom's blog that I thought, "Wow, cool, there are people out there that I can relate to!"
Sunny Day--sometimes I think I'll change the title, but really, I do like sunny days, and yes, my kids are my "little sunshines"--for years, I sang "You Are My Sunshine" to Kyle at bedtime-- so I don't know. Maybe on another day when my mind is wandering again I'll change it.
(Yes, the other kids had their songs, too. Matt's was the "I Love You" song from Barney, Chelsey's was "Somewhere Over the Rainbow," and Evan, well, I have a song that I made up, but it's not a nightly sad).
Okay, just a little more. Back to "You Are My Sunshine." I sang that song to Kyle for YEARS. I remember when he got older, and he got some creativity going, he would change the words. I would stop during the song so that he would say the word that went next. To spice things up, he would put a completely different word in (I think because he knew it would make me laugh). My favorite was when I would sing "When skies are..." and he would say quite dramatically, "Vanished!" or "Vanished, Out of Here!" Oh, how I wish I had blogged back then (or at least kept a journal).


Lorie said...

Tanks for commenting. I really appreciate you praying for my friend....more than you know. I enjoyed reading about your family too. I always am amazed at how other children, affected with FXS and autism, are so similar to my own.

Chelsey said...

Wow. It has been too long. I remember those songs. :)

Sarah said...

I sign "you are my sunshine" to Quinn, too! We've definitely got hand flapping and crib jumping over here. No humming though. Yet.

Sarah said...

Oops - I mean "sign" not "sign" - though maybe it would be cool if I learned the signs to go with "You are my sunshine". : )

FXSmom said...

That song was the only thing that would get Rachel to sleep for YEARS!! Matty's was Amazing Grace.

I also follow my teen daughter around the web. I have a myspace mainly cuz she is there.

Laura said...

I love the title of your blog, and the backstory. My theory on milestones: g-d deletes child rearing from our minds so that we forget the hardships and hence want to procreate again. How else can you explain how the memories of the first three months post-partum become a blur and then vanish?

Chelsey said...


Jen said...

Well, Chelsey, that's what you are! (for 8 1/2 more're making me old!)

Jen said...

Sarah, I was really impressed when you said that you signed that song...thanks for clarifying that! :) Really, though, that song probably wouldn't be too difficult to learn.
Sarah and FXSmom, the Sunshine song--there were many times when I would end up with tears in my eyes while singing that.
Yes, Laura, I agree! It's amazing how we forget the pain of childbirth, or at least I know I did. I remember thinking each time, "Man, how did I forget how much this really hurts!?" I mean, I know it hurts, but I can't recreate that pain in my mind.

Holly's Mom said...

Holly does the head shaking thing too when she is really loopy, needs a nap, or bedtime, ect.. and sometimes when she is full and I am feeding her and she wants no more food. She shakes her head really fast.. is that an FXS Thing? A Sensory Thing? I don't know if she is humming.. I haven't paid that close attention..

I have a "Holly is a little fish" song with a whole long story that we used to sing almost every night.. sadly it is a rare occasion when i sing it now, but i think I will start up again.. it makes me all teary eyed to think of her as a teeny tiny baby and rocking and singing it to her now that she is all grown up (10 months) lol

Umma said...

I've seen non-FX kids do the head shaking thing too. My niece did it as a baby. I think the difference is that sometimes our kids get "stuck" on an activity that is totally normal which then, of course, makes it not normal.

We turned the head shaking into a game. When Monkey would start with the head shaking I would get on his level and chant "No, no, no, no, no?" and smile. He started using it as a way to engage me in play eventually. Now he only does it when he wants to play...he'll wrap his arms around my neck and get nose-to-nose with me and we'll play the head shaking game for a minute or so before he moves on.

I suspect it is sensory based, it's a bit disorienting to me when I do it. It's as bad as spinning in a circle, which Monkey also loves. He amps up the sensory input by turning on the ceiling fan and spinning under it while looking up. That makes me sick to my stomach in seconds but he can do it for up to 30 seconds at a time. He's definitely a sensory "seeker" vs. a sensory "avoider."

"You are my Sunshine" is a major favorite with Monkey's just such a sweet and appropriate song if you only sing that one verse, lol. I heard the entire version on the "O Brother Where Art Thou" soundtrack and was surprised there was more to the song!

Jen said...

Yeah, I agree Umma. When Evan was younger, he shaked his head, and it was very appropriate. At ten months old, he liked to watch Dora the Explorer, and he would shake his head "no" when Dora would ask a question!
I usually try to do something to get Evan's attention when he's doing his humming/shaking head. He has also started turning in circles and thinks it's funny when we say, "Spin, spin, spin."
Kyle was my big spinner. He loved that type of motion. When he was younger, he would go on a NASCAR ride at the fair that would whip him around the corners. We would end up laughing at how hard he was laughing!
Matt's never been big on motion. He's our "cautious" child.

Betsy said...

I love that song You are My Sunshine, too! I have the title on my Italian charm bracelet. :)

AccessDNA said...

Fragile X is such an important issue - thank you for bringing attention to it.