Now

So where is Sarah, exactly, in her schooling?

She is kind of scattered about, working on a few different things at the same time. She likes it like that. It keeps her learning fresh and new. She does not do well going over the same things day after day. Can you say BORING?

I teach her at home with guidance and support from a fabulous teacher who specializes in Sarah's needs.

So one of the things I am to teach her this month is the name and sound of all the lower case letters of the alphabet. She reads using only uppercase ones right now. I am also helping her to make a choice from 4 words on a presentation board, for things she wants to do, eat or drink.

Easter seals has lent her something called a 'quicklook zoom' which is a mini computer that enlarges the words in any book/magazine or menu so she can read what has been written. She is legally blind and requires very large letters to read. I just run it over the printed words and the screen enlarges the words so she can see them. I can change the colors, the contrast, etc. It's wonderful and we are waiting for her school to purchase it for her. It's about the size of 2 decks of cards. It's a great way for her to get experience reading sentences. She loves it because she loves to read.

Sarah's eye contact is much better this past month. What a difference! And she has begun something interesting....when I speak face to face with her she opens and closes her jaw as if she wants to speak but no sound comes out. Now, she makes plenty of sounds and giggles on her own throughout the day, but they are not directed at me. This is directed at me. She gets that she needs to use her jaw to speak but can't get any further right now.

I am trying to teach Sarah to respond to "Hi Sarah" with a wave. Right now she reaches up to tap my outstretched hand, but I need to fade out my hand and have her just lift hers to the sound of "Hi Sarah".

I am teaching her auditory scanning. This is where I ask her a question and then slowly tick off the list of possible answers. When she hears the answer she wants she hits a switch that says 'Yes'. so for instance: "Sarah, what do you want to watch on tv?" She looks at me and I start naming her videos...."Barbie, Wizard of OZ, Sound of Music, Elmo, Princesses..." And she hits the switch when she hears the choice she wants. Cool, huh? We are working on that.

Sarah actually goes into the school once a week for 45 minutes. It is listed as OT, but really, it is for socialization with a typical peer. She loves her 'peer friend' and he loves his time with Sarah. She is learning to use a switch to signal her turn/his turn, she is learning to do activities with another child and she is learning to flirt. :) He enjoys watching how I interact with Sarah and then trying it out for himself. It is wonderful to see. Gains all around.

She is still riding once a week, even in this cold weather. I just bundle her up and off she goes. She is getting pretty daring on that horse! She does 2 handed activities without holding on as the horse goes round the ring and she stays up just fine. I hope she can ride for the rest of her life. It's a great stretch for those tight legs and a workout for those low tone trunk muscles.

There's a point I want to make, since it has just now come to mind and it is important. Sarah is 12 years old. Most of the time a child of Sarah's exceptional needs would have been given up on a few years ago. You know the saying-- that by a certain age the brain is done growing and that's all you can get from a child such as Sarah.
I can tell you that this is not true! Do not give up as a child approaches the teen years because it is quite possible that these older kids can learn a lot more. In fact, they might already know quite a bit that we aren't aware of, but the fact is, they can't show us what they know. It is our job to brainstorm and figure out ways for them to be able to show us what they know, what they can learn and what they have already learned. There's lots of eager learners inside these bodies that don't physically cooperate with their owners. Age is irrelevant. The older Sarah gets, the more she picks up steam, the faster she learns a concept, the more effective I have become in teaching her. There is no end point. The brain is a surprising thing. I believe it can learn for an entire lifetime if we feed it.

There, I am off my soapbox. But it's important. Don't write these kids off.

As usual, Sarah is always teaching me.

More inaugural pics, courtesy of Jimmy

I have no idea what he is doing in this photo below!



Here is a photo of the Bushes leaving in the helicopter from the west side of the Capitol after the ceremony.



And finally, if you look very closely, you can see the first couple dancing in the middle of the pic. Jimmy was at the Southern States Ball.



I think he had a great time and look forward to hearing all about it when he next gives me a call!

Jimmy in DC

So Jimmy is taking in all the inaugural action in DC. Yesterday he attended the concert at the Lincoln Memorial and last night he went to one of the balls. Tomorrow he has tickets to the inauguration and will go to one of the 'official' balls tomorrow night that the new president will attend. Very exciting! He's out the door tomorrow morning at 7:30 am to walk to the capitol. It will take him about 20 minutes from his house, so that's not too bad. He's going to call me in the morning when he gets settled in his spot! Here are some pictures he took yesterday that I hijacked from his facebook account. He won't mind.

Here's a closeup of Abe himself, overseeing the concert:



The crowd behind Jimmy:




The counter snipers guarding Barack Obama:




A view of more of the crowd:




A cute little boy:




and finally an action shot of Jimmy at the ball last night(sniff, sniff, I miss him)

A Surprising Sarah

Today was 'dentist day' for Sarah. She goes every 6 months like everyone else. I started taking her when she was a young, young toddler because it was clear that her teeth were going to be large, white and sparkly, and one of the first things you noticed when you looked at her.(Once you got past the abundant golden banana curls, deep dimples and large round blue eyes of course!) So I took her to my dentist. And she has continued to see them for the last decade. They are just a regular dentist. No special pediatric stuff. No bells, whistles, toys, fruity smelling gloves or tvs on the ceilings. Just the basic dentist. But, they have been great with Sarah. Very patient and gentle. I don't know how many special needs kids they see, but I am guessing, not many. Most seem to go into Boston for their dental care. It can be very hard to give these kids a thorough cleaning. It can be hard for them to open their mouth, keep it open, not bite, not gag, tolerate the sounds of the tools, the lights of the office, the strange smells, the tilt of the chair, the stranger in their mouths....
Sarah is really coming along in this department. Today, for the first time, she put her head back when asked, opened her mouth when asked, kept it open as best she could and I couldn't have been prouder. We have been taking baby steps every previous visit, allowing extra time, and using tricks like counting to increase her tolerance. She was fabulous today. No tricks required. We were in and out in 20 minutes. No cavities today(or ever). Good strong teeth.
I am aware the orthodontist will be another kettle of fish, but we will work with her when the time comes.
So here comes the really interesting part of the day....First a little background. Day in and day out, Sarah pretty much goes along with me on whatever errand I am doing. She is generally happy doing whatever we are doing. Sometimes she doesnt want to go IN a store I pull up to, but for the most part she is laid back and flexible. I tell her we are going here, there or home and all is well.

NOT TODAY!!!


Today, after the dentist, I told her we were going home and pulled into the driveway. I looked back at her and her lips were pouting, like she might cry. So I pulled out her yes/no flashcards and proceeded to ask her questions to try and understand what the problem was.(she touches the word yes or no for the answer)

So I began:

Do you want to take a nap? NO
Do you want to be home? NO
Do you want to stay out in the car? YES
Do you want to go on the highway? YES
Do you want to go to the mall? NO
Do you want to go to the store? NO
Do you want to go to school? NO
Do you want to go horseback riding? NO
Do you want to get something to eat? YES
Do you want to go to a restaurant? YES
Are you hungry? YES
Do you want frenchfries? YES

Sarah wanted to go out for lunch!! And she initiated it!! And she communicated it to me!! It was her idea. Not mine. For a moment I was the one who was speechless. And then I put the car in reverse.
I backed out of the driveway and we went out for lunch. Me and my daughter. And Sarah was happy. And I was thrilled. And proud that she chose to communicate exactly what SHE wanted to do, hoping that I would get it. She was so patient with me while I struggled to understand her. She was purposeful, deliberate and unwavering. And she remained calm. No tantrums for her! No crying, just communication. It feels good. We are doing good.

Slow Sunday

Today was a day of recuperation. Our first day in the new house without John. He has headed back to college and I won't see him until March :( Last night it snowed and it was too slippery for me to carry Sarah out of the house. So Sarah and I were stuck in. But it turned out for the best. We hung around. It was very quiet. I gave Sarah a bath and hairwash, snuggled her up in warm pjs, and lit a fire. She watched some music dvds. We had homemade pizza for dinner. She is happy, smiley, giggly, pink. She is now in bed, singing to herself and it warms my tired heart. Its been a long month full of highs and lows. Today was nice. A needed pause. A moment to just stop and enjoy. And my girl is just the ticket.

And so we have moved

What an event! So much has been done. Our new home is larger, I think I need more furniture to fill it up. I have one entirely empty bedroom. Sarah has done well with all the changes so far. She seems to be amused that I have to carry her further down the long hall from her bedroom to the familyroom. She was NOT amused when I had HER walk the same route :)
Every little thing I do in the house takes 1/2 hour. I think it will only take 5 minutes and lo-and-behold, there I am finishing it up 30 minutes later. Uggh. The to-do list is finally getting shorter though and I am hoping to have some semblance of normal by the end of the weekend... Just in time to start back up at work, get Sarah back in the swing of riding and school, get John back to college, meet with the cable guy and a plumber and finally do laundry and food shopping.
So on we go into 2009.