The Top Ten Reasons Elise and Charlotte are Twinkies:
(Definition of Twinkie: A matched set, that are virtually identical!)
1) They look SO much alike. They both have the dark blonde hair and grey-blue eyes I am enchanted by. (So much so, that in my sleep deprived state at Charlotte's 3 month check up, I demanded a chromosomal test done on Charlotte, because I was SURE that she must have Downs, too...they talked me out of it.)
2) They both have the Brushfield Spots in their irises. (See comment on #1!!) This is my very favorite indicator of Downs, but it can show up in typical eyes, as well. Brushfield spots are magical stars that are unique pigmentation in the iris...to me they are almost indicative of being able to see into people, to truly see their hearts...
3) Nothing's ever easy. Medically, attitudinally...you get it.
4) They are both pocket babies. They cannot get close enough. If they could crawl into your skin to be carried about, they totally would.
5) They have friendships with stuffed animals. They do not just have a stuffed animal that they love. They have real relationships. The animals have their own set of ideas, personalities, likes/dislikes, and plans that may or may not coincide with their little owners.
6) They adore animals. Turtles, dogs, cats, skinks...whatever. Completely captivated.
7) Stubborn doesn't begin to describe it.
8) Sensory seeking/defensive. Both crave certain things and will flip out over others... This will impact their happiness, sanity, and general well-being.
9) They get on completely obsessive kicks. They will get a movie or toy or theme and will run it into the ground. Nothing but______ for weeks. This will play out in movies, food, clothes, etc.
10) They adore each other. They really are each other's other half. They bask in each other's company like a cat in a sunbeam.
Friday, August 26, 2011
Twinkies
Labels:
communication,
Down Syndrome,
Elise/Charlotte,
friends,
play,
playing,
Special Needs
Wednesday, August 17, 2011
Red and Green
As it's been a little bit since my last post, I figure I'll do my usual recap blitz.
Elise went back to school. Which is why I've been a little MIA. When we went to open house, she learned that while she had the same teacher and some of her same friends, it was in a different room, and she was missing one of her crucial buddies. She thrashed a bit and growled and was angry about the new room. Thankfully, after sitting and filling out sheaves of paper for Amelia's (little sister) Kindergarten Open House in a miniature chair, I decided to beg for Elise's sheaf of papers from her teacher to take care of at home, in a normal sized chair. So she kind of got 2 open houses and was significantly okay-er than if she had only gone to the new classroom only once.
She is currently testing (hazing) her new para-pro. She is pushing the envelope to see if this para-pro is willing to step up and be a power-player. Because Elise is a very strong personality she always checks her boundaries...and frankly, is unfailing successful in assessing the situation. She ALWAYS knows. It appears that Ms. M is winning because after only one "yellow" day, Elise has fallen back into better choices and is having "green" days.
In other news, Charlotte (baby sister) has been and is being tested for allergies. (Tiffany's Science Theater is back.) Red 40 has come forth as one of her primary allergies. We will be testing for Yellow 5 and Blue 1 in the next couple of weeks. While this is a massive pain in the neck and will make for some really difficult social situations, it is probably not all bad. There are a LOT of anecdotal studies that have been done on the impact of these dyes on kids with Autism and ADHD. (Google it, I couldn't begin to decide which one to link!) Do I think there is a absolute tie? Maybe not. Do I think it can contribute? Absolutely.
I think it is probably linked like vaccinations and autism. Do I think vaccines cause autism? No. Do I think there is an underlying propensity that is triggered by vaccinations and environmental factors? Absolutely.
So, all this said. I am SO not excited about the constant label reading. SO.NOT.EXCITED. But I do think that reading the labels and avoiding these dyes may turn out to be positive thing for our family, most particularly Elise. As I have started reading the labels in our pantry, I have been honestly horrified about what is dyed. I mean, seriously, do we need 3 shades of Yellow to dye our TAN, "natural" colored wheat cereals? Not probably. Holy smokes, like we need more chemicals in our food!!
Elise's ADHD meds appear to be working for now. An answer to prayer. She has matured a lot over the summer, and while this medicine isn't terribly strong, it is taking the edge off and does all that is needed for now. So we are in a holding pattern...Not a bad place to be.
Also, I finally turned in my application for the Handicapped Parking plate and hang tag. I filled out the application at the beginning of the summer. I have been torn over filing it for 2 or 3 months. But after a particularly heinous parking lot wrangling after Open House, I gave it to the pediatrician for his John Hancock and notarization and got it back in less than a week. We took it with us to pay our car ad valorum taxes and tag fees, and for no more than our usual fees, it came home with us the same day. I was amazed, I honestly thought it would be a bigger deal. I haven't had to use it yet, and I'm hoping that it works as an insurance against bad days....you know, like bringing a jacket or umbrella means you won't need it?
So now you are all caught up. Hope your start of school goes as smoothly as ours...it has never gone this well and I cannot begin to tell you how much I appreciate boring. It is SO lovely!!
Elise went back to school. Which is why I've been a little MIA. When we went to open house, she learned that while she had the same teacher and some of her same friends, it was in a different room, and she was missing one of her crucial buddies. She thrashed a bit and growled and was angry about the new room. Thankfully, after sitting and filling out sheaves of paper for Amelia's (little sister) Kindergarten Open House in a miniature chair, I decided to beg for Elise's sheaf of papers from her teacher to take care of at home, in a normal sized chair. So she kind of got 2 open houses and was significantly okay-er than if she had only gone to the new classroom only once.
She is currently testing (hazing) her new para-pro. She is pushing the envelope to see if this para-pro is willing to step up and be a power-player. Because Elise is a very strong personality she always checks her boundaries...and frankly, is unfailing successful in assessing the situation. She ALWAYS knows. It appears that Ms. M is winning because after only one "yellow" day, Elise has fallen back into better choices and is having "green" days.
In other news, Charlotte (baby sister) has been and is being tested for allergies. (Tiffany's Science Theater is back.) Red 40 has come forth as one of her primary allergies. We will be testing for Yellow 5 and Blue 1 in the next couple of weeks. While this is a massive pain in the neck and will make for some really difficult social situations, it is probably not all bad. There are a LOT of anecdotal studies that have been done on the impact of these dyes on kids with Autism and ADHD. (Google it, I couldn't begin to decide which one to link!) Do I think there is a absolute tie? Maybe not. Do I think it can contribute? Absolutely.
I think it is probably linked like vaccinations and autism. Do I think vaccines cause autism? No. Do I think there is an underlying propensity that is triggered by vaccinations and environmental factors? Absolutely.
So, all this said. I am SO not excited about the constant label reading. SO.NOT.EXCITED. But I do think that reading the labels and avoiding these dyes may turn out to be positive thing for our family, most particularly Elise. As I have started reading the labels in our pantry, I have been honestly horrified about what is dyed. I mean, seriously, do we need 3 shades of Yellow to dye our TAN, "natural" colored wheat cereals? Not probably. Holy smokes, like we need more chemicals in our food!!
Elise's ADHD meds appear to be working for now. An answer to prayer. She has matured a lot over the summer, and while this medicine isn't terribly strong, it is taking the edge off and does all that is needed for now. So we are in a holding pattern...Not a bad place to be.
Also, I finally turned in my application for the Handicapped Parking plate and hang tag. I filled out the application at the beginning of the summer. I have been torn over filing it for 2 or 3 months. But after a particularly heinous parking lot wrangling after Open House, I gave it to the pediatrician for his John Hancock and notarization and got it back in less than a week. We took it with us to pay our car ad valorum taxes and tag fees, and for no more than our usual fees, it came home with us the same day. I was amazed, I honestly thought it would be a bigger deal. I haven't had to use it yet, and I'm hoping that it works as an insurance against bad days....you know, like bringing a jacket or umbrella means you won't need it?
So now you are all caught up. Hope your start of school goes as smoothly as ours...it has never gone this well and I cannot begin to tell you how much I appreciate boring. It is SO lovely!!
Sunday, August 7, 2011
A Sweet Post by a Friend
I love reading the posts of a dear friend-in-law. He is an avid flyfisherman. I understand absolutely none of his fishy jargon. However, I bask in the descriptions of the peace and serenity of his trips. I feel like I am taking little refreshing heart vacations whenever I read his blog posts. I often feel like I ought to take up flyfishing after reading them. My husband loves to flyfish and after reading Marc and watching A River Runs Through It, I do believe I understand why.
He wrote a very moving post today that I think needs to be posted here. I'm sure you'll understand why...he was blessed with a glimpse of an Elise yesterday...
A Perfect Drift
Enjoy. And follow his blog for some ruminations that will bless you. Whether you fish or not!! :)
He wrote a very moving post today that I think needs to be posted here. I'm sure you'll understand why...he was blessed with a glimpse of an Elise yesterday...
A Perfect Drift
Enjoy. And follow his blog for some ruminations that will bless you. Whether you fish or not!! :)
Labels:
Blog Recommendation,
communication,
community,
Down Syndrome,
joy
Wednesday, August 3, 2011
It's time
Remember my post about the Special Needs ministry that was needed? Well, the final proposal goes before the ministers this weekend. I am hoping to deliver it by hand, and perhaps talk briefly about it before it goes under scrutiny, as they did not meet with us in person first....but I do crave your prayers, it will affect more than my child and my family.
Thank you!!
Thank you!!
Labels:
church,
communication,
community,
Down Syndrome,
ministry,
Special Needs
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