Saturday, January 31, 2009
Sunday, January 25, 2009
I was lying in bed last night thinking about today being Alex's birthday. He would have been 12, and truth be told,I cant even imagine anymore what he would look like. Twelve is so far from 3. I was thinking about his last day, I had read the report that he was home alone with the man who killed him while the mans wife went to the store to get stuff for burgers. Alex never met a burger he didnt love. :) He never got that burger. That boy loved food so much, and in this mommas mind, he should have his burger.
So today I went and got his Birthday ballon, and a little red truck like the one he so treasured, and a burger. And I went to his tree and left it. No, Alex wont ever really have that burger. But maybe he will know that his Mom really loved him, and wished he had had the burger, and gone to Disneyworld, and grown into the fine young man 12 would have brought.
I cant change the past, but I can honor his memory today. Cheeseburger, just ketchup, no pickles...just like you liked it, boy. Happy Birthday
Sometimes Thou may'st walk in Groves,
which being full of Majestie will much advance the Soul.
- Thomas Vaughan, Anima Magica Abscondita
Thursday, January 22, 2009
"Michelle, this bra is wicked awesome. But I would like it to be in hot pink. Can you get that for me, please?"
Her: "Michelle, please dont tell Julianna that I love Barney. Julianna doesnt like Barney. But she likes Barbie Diamond Castle and Hannah Montana. Its ok if I like Barbie Diamond Castle and Hannah Montana. It is NOT ok if I like Barney. Don tell her,ok Michelle?"
(I tell her it is ok that she still likes Barney, that she should not be afraid to be who she is.)
HER: "I do. Just dont tell her that, ok?"
Her: Mom, these skates are broken.
ME: They arent broken, its just hard to balance on skates.
Her: Well, then my feet are broken, cause this is not working.
Her: "Michelle, when you was a little girl, did you like Barney?"
ME: When I was a little girl, Barney wasnt born yet.
Her: "Wow, you must be really REALLY old."
My little, BIG girl.
Tuesday, January 13, 2009
Saturday, January 10, 2009
My young friend Alex is raising money for a very worthy cause, Special Olympics!!
The MSP Polar Bear Plunge benefits Special Olympics Maryland and the 10,000 children and adults with intellectual disabilities who experience the life-changing benefits of participating in the organization's year-round training and competition programs — all at no cost to themselves or their families.
Join me in my efforts to support Special Olympics - Maryland!
This will be Alex and his dad Chip's third year jumping into freezing water! Alex is an awesome 17 yr old young man who happens to have Down syndrome. He is a go-getter, a charmer, and even though he is too grownup for me to call him cute, he just IS. Adorable even. If you can help in any way, please chip in a few bucks, they take PayPal.
Good luck Alex!!
Thursday, January 08, 2009
Tuesday, January 06, 2009
Well, regular readers know that we made the decision ( a HARD one!) to have Ciarra spend afternoons out of the regular classroom. We started this just before Christmas break, and yesterday was her first day back. She is a MUCH happier little girl now. Huge sigh of relief, I think we did the right thing.
Still, it is hard to let go of something I fought so long and hard for. I believe in Inclusion, theoretically. I think that it is probably the best thing for our kids with DS...if the schools are set up for it to work. Don't get me wrong, our school truly bent over backwards to make it work. But Ciarra was the first to really have a significant disability and be fully included, every step was like re-inventing the wheel. No one had any experience with modifying curriculum, there is no "Inclusion Specialist" as there is in bigger schools. We all gave it our best shot, but for Ciarra, it was incredibly stressful.
Easy for me to believe in Inclusion, but she is the one who had to go in every day and struggle through it, with people who were also struggling through it, all doing their best to make it work but with NO parameters and no previous experience of any sort. 4th grade is not the time for Mom to be hanging out, helping pave the way, it is a time for independence. Independence is hard to come by when you are in a classroom with 22 other kids who generally "get" things much more easily than you do.
I imagine it had to be really tough on her to have to work so hard to get things right, only to find the other kids had already moved on to the next subject. Dont get me wrong, Ciarra is academically doing very well. She is currently working on an Abe Lincoln project she is really into. She loves math, she loves to read. But for her, every subject requires that much more concentration, that much more time, thought, and desire to get through. To always be trying to keep up is hard, never getting a breath or being able to be first with an answer. Like her momma, my daughter likes to be first, fastest, smart enough. She is incredibly competitive. Who doesnt want to be right more often than they are wrong? It was destroying her will, and killing her desire to even go to school.
So for today, this works. I am still wrestling the demons of Inclusion in my mind, still wishing it might have worked better. But in the end, it is Ciarra who matters most. Her happiness is so much more important than her academics. Hands down, if I had to choose, it would be a happy and well-adjusted child over "fully Included"...any day of the week.
Letting go of that has been very different than I expected. I expected to feel guilty, to feel beaten, to be very sad. It was letting go of normal, again. What I have discovered is that it has been very freeing. I love to see her smile, as she tells me about her day. I have asked her at least ten times if she wants to go back to the other classroom, or if she likes the new schedule. She doesnt just like it, she loves it. She is excited to go to school, she loves to tell me about her days. She wants to work hard, she is happy. That is all I need to know to be sure this was the best decision...for her.