Family Pictures

'Reverse' Down Syndrome?

I was sent an article on Twitter about a new 'breakthrough' about Down syndrome. The article, found here.

@4LuvofDS asked the question "if there really was a way to reverse DS, or 'cure' it, would you do it?"

I don't know. Most likely not. Lauren is doing very well developmentally. I would not take something away from her that is just a part of her. Now, if she had cancer, that's a different story. But Down syndrome is not life threatening.

A different article is actually from the Down Syndrome Research and Treatment Foundation. It is about the same thing, but worded sompletely different. They are talking about a 'possible therapeutic strategy to improve cognitive function'. That, I would probably do. It wuold most likely be kind of like giving Lauren vitamins. And if it helps her, that's great.

So, no, I would not choose to reverse her DS. Help her cognitively, yes. But take a way that extra chromosome that is part of who she is as an individual? It's not really my choice anyway. God has a plan for her, and knew that she would have DS. Take that away, and it could screw her up forever.

This didn't come out the way I wanted it to, but I tried.

weird

Lauren has been so crabby lately. But I know why. And really, I can't do anything anout it, other than give her medication. She has 2 molars (on top) that are just starting to come through, a top front tooth that is trying to come down, and I think another bottom tooth. Once all those come through (only partially, cuz Lauren's teeth are either really small, or don't come through all the way like they should) then she will have 7 teeth. Wow. She went from having NO teeth at 18 months to SEVEN teeth at (probably) 24 months. Weird. In just a few weeks, my firstborn baby girl will be TWO YEARS OLD. That is just crazy. I nearly cry everytime I think about it, and I look at her now, compared to this time last year. She is so different. So much more like a 'big kid'. Just yesterday, she was playing with Elmo like he was a person-putting him in her 'car' (a laundry basket) and being so careful with him, putting him across from her, and beside her (and eventually kicking him off the island). She was also signing 'help' like a maniac yesterday, every time she couldn't get something she wanted. I know she understands what the word means, and when to use it. We still have to remind her sometimes, because she will start yelling, but yesterday it was all her. She knows about 50 signs now-one of these days I'll make a list, just so I know so I can keep up. She was up a little last night, and at 5 this morning (cuz Avery woke her up) so now she is in 'the big bed' with Tim, getting a few more hours. She's so overtired. She's growing up so fast. I don't want her to-but I do, to see who she becomes. weird.

We Got It...The Vaccine, I Mean

Today, Lauren had to get recertified at WIC. While we were there,
(Tim, Lauren and I-Avery was with auntie), we asked about the H1N1
vaccine-if they had it, and if Lauren was in the risk group. Yes to
both questions. So, Tim and I got the flu mist, and Lauren got both
the H1N1 and seasonal vaccines. Hopefully, we won't have any
reactions. I still don't know if we made the right decision-but we did
it. I am worried about side effects and getting the actual flu. But I
have to protect Avery right? She's only 3 months old, and can't get
the vaccine. Ugh. I'm nervous.

Lauren was 26 lbs and 31 inches today. She's a giant! (compared to
what she was).

I'll do a better blog post sometime this weekend, but the kids will be
home soon, and I just feel like relaxing-oh crap-after I finish the
laundry. Grrrr.

Lauren ECSE

Tuesday, Lauren's ecse teacher, Wendy, was here. Lauren is starting to
use PECS cards, and she is still signing like crazy. Wendy keeps
saying that no child Lauren's age knows this many signs and can use
them all (out of all the kids she has seen over the years). So that
makes me feel pretty good.
Lauren ate a grape too! It was hilarious! Wendy had a PECS card for
cheetos and one for grapes (Lauren likes cheetos but not grapes). So
Wendy put the cards in front of Lauren and asked her which one she
wanted. Obviously, she picked cheetos, so she got one. Then Wendy
asked her again, and Lauren picked grape. We all knew Lauren didn't
like grapes but she got one anyway. She threw it just like she always
does. So Wendy asked her again, but Lauren went after the grape she
threw and put it in her mouth. We all clapped and said 'yay' and so
did Lauren. She ended up eating one more grape and a ton of cheetos,
but she's getting the hang of using the picture cards. Wendy tried the
same thing, but with some cards with pictures of toys. She told Lauren
what they were and Lauren picked one. Lauren did puzzles, cars, and
animals.
Before Wendy left, I asked her something that has been bothering me
for a long time-what Lauren's developmental age is. Wendy got out the
checklist and went over some areas with me. Lauren is going to be 23
mos on Nov 8 and in expressive language (talking) she is at about 11
mos (still). But every other area ranges from 18-30 mos. So Wendy
guessed that her overall dev. age is 18-24 mos. (other than expressive
language).
I know Lauren can do this and I know my goals are set kind of high for
her, but everytime we set a goal we say 'that's a big one' and she
surpasses it by a lot, sooner than the goal was supposed to be met.
As a mother of a child with 'special needs', its probably totally
wrong of me to wonder about her dev. age. I know that we are supposed
to let them develop at their own time and not compare and stuff, but
now I know the exact areas we can work on.

i'm still not okay

I just watched an episode of 'Joan of Arcadia' tonight, and it talked
about death, dying and grief. It also had a man with 'special needs'
but that's not the point. The mother still had issues about her son's
paralysis that was nearly 2yrs before. She finally sought help from a
priest, who recommended the book 'On Death And Dying' (which I will
look up later) and said it will help her work through her grief. He
said that even though her son didn't die, it still felt like she lost
him. He will never have the life that they had planned (he was a high
school graduate when the accident happened). He would never walk
again, and his Mom had a hard time accepting that, no matter how much
she made
it seem like she was 'optimistic' and 'moving on'.

Immediately I thought of Lauren. I still have not worked through all
of this-her diagnosis, her prognosis for the future, all the decisions
I will have to agonize over, the dreams and expectations I had for my
firstborn baby. No matter how I try to be happy and make it seem like
I have moved on and gotten past (accepted) her diagnosis. But I
haven't. I really haven't and it bothers me everytime I see her, or
look at baby pictures of her, or see or hear about a child her age who
is doing all the things they 'should' be doing, and she's not doing
them.

Ugh. I can't write anymore tonight.

To Homeschool Or Not...

I have been thinking about Lauren's educational future for a year now.
I am torn between homeschooling and putting her in public school. Our
ECSE coordinator recommends putting her in head start/preschool when
she's 3. If I do that, I have to decide if I should put her in an
integrated program or a segregated (all kids w/special needs)program.
I want her to be treated. Just like any other child, notbe
automatically put in 'special ed' just because she has DS.
But what if I keep her home? She's a very social kid. Would I be
hurting her if I didn't let her be with other kids and socialize? I
just don't know.

lauren This Week

Lauren had physical therapy on Monday, ECSE Teacher on Tuesday, Speech
Therapy on Wednesday, and the Developmental Disabilities Case Worker
today. Usually, she doesn't she so much going on everyday, but this
week, everything had been rescheduled.
She did well in PT, although I wasn't here for it, like usual, so I
don't have any details. For Wendy, the ECSE Teacher, she did well
also. She loves Wendy. Wendy can get her to do just about anything.
She didn't really do anything new this week, just making more progress
in the checklist with little things.
The ST didn't go so well. We had to wake her up from her (short) nap,
and for about 45 minutes, everytime she was asked to do something she
would throw herself on the floor. She's not really making any 'word'
progress, but she will copy more sounds now, and she's only seen the
ST 3 times.
She goes to bed now around 7 or 7:30 (except for tonight, but that was
our fault). She will usually sleep til at least 6, sometimes 7. That's
all for tonight.

Lauren Update

Lauren is walking RUNNING all over the place. She weighs 26 pounds and has 3 teeth and 2 molars. She has a bad 2-yr-old attitude and hates when she doesn't get her way. She has nearly 50 signs and her favorite ones to do are cow, pig, chicken and milk.

She is doing well with Avery - almost never tries to do away with the poor little baby now! She pats her back when i'm burping her, and signs 'baby love' all the time!

Hopefully we'll get the internet back by thanskgiving so i can update more frequently.

to get updates by twitter: www.twitter.com/mommaoft21girl. click 'follow' to start receiving my tweets! (its all i got right now!)

2009 Buddy Walk!

my sister and lauren