Jul 31, 2010


I couldn't wait to share this one. Last night I was on the computer and Steve calls me urgently "Ainsley climbed up the stairs!" I jump out of my chair and peak around the corner. Sure enough she's on the 4th stair.

She's pretty impressed with herself.

But then what to do?....
It took every bit of my self-control not to rescue her from that spot. Worst-case-scenarios flashed through my mind. But instead we cheered her on. I figure if she was able to get up 4 by herself then she just might be able to get up the last 7.

 With a lot of effort and determination she takes them one at a time.

 Don't look DOWN!
 For a moment I thought she wouldn't be able to continue.

But then she does it! The final stair!

 Big congratulations were in order for such an awesome achievement!

She points to the stairs as if to say "Look what I did!"

The cheers and applause were deafening! YOU GO GIRL! Show us what you've got! This night we taught the meaning of the word PROUD!

Jul 26, 2010

To Camp and Back Again Giggety Jog

The savvy bloggers out there will probably notice that I backdated some posts. Sorry to do that, but things have been crazy busy with no time for blogging lately.

Sunday July 18th was Adrian's 7th birthday and we shipped him off to Harry Potter camp with his sister for a week. (It was the only week that Camp Colman does "Harry Potter camp" so I had no choice about it being on his birthday.) We celebrated by opening presents the day before so he could open and play the LEGO Harry Potter Wii game before he left.

Yes that's Harry on the cake.

Ainsley inspected and considered the ice cream cake.

I helped her say "I love you Adrian" using her AAC device.

Look at my cutie! So growin' up goin' off to sleepover camp for a whole week. Wah!

We drove them, and were late. If you ever send your kids off to camp do NOT underestimate the time it takes to tag EVERY single item they take with them. Do NOT listen to your husband who at 1am says oh don't worry, let's go to bed, it won't take that long. It'll be FINE.  In fact if your husband says It'll be finnnne, in "that" tone, you know it most certainly will NOT BE FINE. Anyway.....

On the way...it's a lonnnng drive. Ainsley discovered a peppermint in her booster seat. The kids (E&A) kept asking "What'd she find?" "What is it?" Their jealousy enthusiasm must have sparked her interest because she tried it. And tried it again, and again. So now we might have finally found something that she likes the taste of, though she rejected the candy cane from Santa for the past 3 years, so it's probably too much to hope for.

Gingerly at first.

Showing Evie and Adrian what SHE was lucky enough to find in HER seat. Oh man, sometimes I wish she could speak just to know what would come out of her mouth.

Mmm. Yeah, this is pretty good.

The kids were sorted into houses. My kids were both in Slytherin. Booooo!

The camp map, it's a huge place on some beautiful land.

A view across the lake, with the camp lodge in sight on the hillside.

The beach where they had campfires. And nighttime duals with death-eaters?! Who let these kids go to this camp?!

A cool out building.

The color on these trees was just amazing.

But alas, no beautiful scenery for us. Steve took the week off so we could repair our kitchen floor. Ainsley had, not once, but twice got a splinter shoved all the way up her big toenail. Poor girl has such a pain tolerance she really didn't complain (until I pulled them out of course).  Obviously this was unacceptable and since the floor is fir and badly damaged, and so old and thin it can't be refinished we opted to paint.
A couple boards had to be replaced which took some time and special tools. Plus 3 coats floor paint and 2 coats clear floor finish. It took us the entire week, and we got little else done. Well, okay Steve finished the backyard fence, we cleaned the basement carpets and cleaned behind the 200lb range for the first time in 10 years. Yu-ucccck! 

Our nurse picked up an extra shift, so that helped but when she wasn't here we put Ainsley to work to keep her busy. Just kidding. That paintbrush is dry, though she thought it was fun to pretend. One kid while you're working is still easier than 3. It wasn't fun but it's a huge relief to have a safe floor and it looks really good, but then I like the look of a painted floor.  The furniture is not quite back in place. Maybe toward the end of the week when the floor's had a chance to harden.

We picked up the kids Saturday morning.

Ainsley is so loved. She did fine in their absence, but I think she was excited to see them.  They are entertaining, for sure.

And the goofiness begins before they're even in the car.

My grubby little campers. I was working so hard I barely had a chance to miss them. And they were having so much fun I think they barely had a chance to miss us. They immediately said they want to go back next year. If they do I hope we get a REAL vacation.  Cross your fingers that Adrian forgets that I didn't throw him a birthday party.

Jul 17, 2010

Another Great Speech Therapy Session

We had a great second session with Pam today. I feel so fortunate that she agreed to see Ainsley. One wonderful thing about Ainsley is that she learns quickly and remembers. It was clear right away that she remembered the games we played with Pam the week before.

One game/activity was to say the animal sound for each animal on the pages of a book. Ainsley can't even come close to making animal sounds so past efforts trying to to get her to do so were completely unsuccessful. Basically she wouldn't even respond so I stopped trying because I knew it was hopeless. Pam noted that she would verbally "shut down" when asked to make sounds/say words she knows she can't. With Pam the goal (for now) is just to make the sound she can, which is kind of an "Ahhhh. " Ainsley knew that is was okay to make the sound "her way" and so she did, OVER AND OVER and OVER AGAIN. Pam would clap every time. It's goes like this:

Pam: "What does the cat say?" (pointing to the picture)
Ainsley: "Ahhhh"
Pam: "Yea!" (with clapping)
Pam: "What does the dog say?" (pointing to the picture)
Ainsley: "Ahhhh"
Pam: "Yea! (with clapping)

This repeats through the 10 or so pages and then she starts the book over again as many times as Ainsley maintains interest.

Pam had her listening to her own voice using a tube and stethoscope and suggested making a whisper phone using PVC pipe, which we did and Ainsley LOVES. The idea is that listening to the voice draws attention to what the child is saying. And it's fun and encourages a kid to use her voice. Great ideas, huh?! 

The other activity she did was have Ainsley call toy animal figures to her. Each time Ainsley called them with her voice the animal would come a little closer until it eventually reached her. Then Ainsley gets the animal, and gives it to me and into a pile it goes. She loved this game and again the goal is increase vocalization and use of the voice. The activity makes using the voice fun and therefore encourages more use of the voice. Such a simple idea, yet it works. I think we've made more progress in the weeks we've been working with Pam than years of traditional therapy. Although to be fair, Ainsley didn't have use of her vocal cords for her first two years.

It's amazing to watch Ainsley be so incredibly vocal during the hour that we are there. And it has carried over at home. In addition it seems like all the practice is paying off. She's starting to make some consonant sounds. She can't make them on demand, but it's great to see the beginning of her using her lips and tongue to change sound. Even though she uses her vocal cords to produce intonation, she's never used her lips and tongue.  Pam observed her eating. She gave the suggetion of allowing her to dip a tube into her "tastes" of food in order to get her chewing because it's during chewing that kids make sound and figure out that moving the jaw changes sound. Ainsley isn't ready to chew real food, but she can chew on toys. So we're going to be pushing the chew toys. And we've actually seen Ainsley start to close her mouth rather well around a spoon over the last few weeks so we're going to try to push feeding a little harder again.

Of course the progress toward true speech will likely be slow. Ainsley does have a malformation of her cerebellum and a trach. I'm under no illusion that it will be easy. But I have more hope than I've had in a long time. We will still be working on sign language and using an AAC device. It may be years before she can be understood by the average person. But honestly I'd be happy if she could verbally answer yes and no questions and say a few words. At least for now.

Snail's Pace Race

Having a special needs child gives me just the justification I need to buy whatever toys I want, under the guise of "therapy". When you have to work much harder than average to teach basics a good toy that helps do the job is much cheaper than even a single therapy session. That's what I tell myself anyway. Shhh. Don't burst my bubble.

I've loved the Ravensburger game Snails Pace Race  since my oldest played it as a 3 year old at King Street Co-op Preschool and I should have bought it years ago, especially now that I see it's half the price of the independent toy stores if you buy it through Amazon. It's a well made game, I love the colorful wooden snails. And it's non-competitive. After the first roll you bet or guess which color snail you think is going to win the race. You can all bet on the same snail and everybody wins! Yea no crying! (Of course Ainsley doesn't understand the concept of winning or losing but her big brother sure does.)

This is the FIRST game Ainsley has played. She can throw the dice by herself, although cover your eyes 'cuz they go flyin'. She can move the snail, even if it doesn't stay in its lane or move the right number of spaces. Even if she doesn't fully understand I think she's learning her colors and having lots of fun with her brother and sister. SO cute!

Jul 16, 2010


Why am I shooting pictures of doorknobs?

Today is the day that I am no longer safe in the bathroom.

Look who figured out how to open a door?!

Jul 15, 2010

The Ballet Shoes Play

Normally I don't post things that aren't about Ainsley but I will just this time for those of you who've been wondering if we survived "THE PLAY".  The performance of "Ballet Shoes" was on July 10th. It went pretty well, considering that Evie didn't want parents backstage to help (she wanted us all to see the show), and the fact that it was done by kids age 9 and under. It really was fantastic to see how into it they were. In all it lasted about 3 hours, including a 30+ minute long intermission that included me trying to persuade my dear daughter (the director, writer, producer) to go on with the second two acts after she got angry with a friend for being unprofessional. Well honey, it isn't Broadway. They are KIDS. Luckily the show went on and the curtains withstood much yanking and pulling during the 37 scenes. There was a lot of waiting during costume changes. If only they'd had a backstage crew to help with props and costumes. Or perhaps if the director wasn't also one of the main characters and in most of the scenes, things would have moved a little quicker. Still it was a pretty amazing first effort. Those kids did a great job!

I was a little off to the side and didn't get great pictures. I was having a camera malfunction, was busy running backstage despite my best intentions, and planned to get still images off the video, which ahhhem, the camera man didn't have centered on the stage. So these are some of the best of the bunch and will have to do. Sadly.

Adrian as Gum. I was so proud of him for learning all those lines. He was 6! (Okay, turned 7 a few weeks later, but still!)

The oldest Fossil sisters confronting their guardian. Of course I'm proud of Evie too. She took this quite seriously, as much as an artsy minded 9 year old can.

Adrian and Sylvia as Mr. & Mrs. Simpson, the boarders, arriving at Gum's house.

The Fossil sisters about to make a vow.

At the ballet school.

The Alice in Wonderland performance.

The camping scene.

Pauline's screen test.

Pauline's movie premiere.

Madame and Posy at the ballet.

Posy returns after going missing.

Gum returns. THE END.

The actors during "Questions and Answers".

We celebrated with cupcakes in their beautiful yard, it was a lovely day, considering the lack of sunshine in Seattle this year. There's Ainsley right in the thick of it, having a blast. I think she actually enjoyed all the activity around the house.

The girls enjoyed seeing their names and pictures in the program, which we created using our Creative Memories scrapbooking software.

This production dominated much of my time and attention in May and June. Another one of those things that spiraled out of control into something much bigger than initially intended. So although it was an experience of a lifetime, I was relieved to get back to life as usual. Not that life as usual is easy or fun. But my life + elaborate production is particularly exhausting.  Miss Busybody decided to make a chalk drawing of the cast on the patio the second we got home. I don't know where she gets her energy. Next time she tries to talk me into doing something crazy, remind me to say NO, no matter how persistent she is at asking!