Friday, December 26, 2008

Ending 2008 on a High Note

Livie has been stealing the spotlight time and time again over the last few weeks. First, it was the, out of the blue lightning bolt of starting to take herself to the bathroom by herself. We weren't prepping her for it, we had been working a schedule and neither was a school. She just made up her mind, got herself into the bathroom and did it; and she has kept on doing it. Maybe learning how to open door a couple of months ago helped with her confidence. I think I mentioned, we still have to worry about her stimming in the bathroom, in the form of flushing things down the toilet and playing in the shower. But from a 'going concern', she's in a steady state.

The other amazing thing with Livie lately is her communication. In September, she started with a new teacher who is big on signing. So she has started a dozen or more new signs. Along with this, her speech, or more correctly her meaningful sounds have increased as well. Her speech therapist would always be able to P,B,M,D,T out of her in a therapy situation, but we would rarely get them out in a natural situation. Over the last few weeks, a new form of potato stick got her talking. French's used to have her favorite, but they have since stopped making them. These new ones, called Lesser Evil Krinkle Sticks have gotten her to use the sound 'Pa' consistently with me to ask for them...God bless junk food (or not so junkie junk food!).

Now to the cherry on all this, we just recently started her with a new language therapy. First session today and Linda received the shock of her year. The group and Linda were pairing with Livie in the first session, which basically means they were doing everything possible to be her best friend. They were playing in the water in a sink and bringing in various toy animals. Linda showed her and said 'snake'; Livie repeated back SSSS. Same thing with a frog...FFFFFF. These sounds are not in her 'prompted' repertoire, so Linda was understandably bowled over. We're not sure if it's our doctor's methodology or if it's the use of transcranial Direct Current Stimulation along with the therapy. It is way too early to tell, but as we move along on this, I'll bring in more detail.

In any event, it definitely gave us a high through about half of the supposed-to-be 90 minute ride back. After we hit a traffic jam in Brooklyn, all the great feeling left us, we threw out the rule book and started giving her juice; 30 minutes into the jam, we could tell her other new found talent was being threatened. She was getting real upset and we knew why, but I was not pulling over in some graffiti strewn section of Brooklyn to find her a toilet. She didn't make it all the way home and we had a major cleanup somewhere in a residential section of Staten Island. I can't fault her, she really tried, but we can't expect her to make it to 2 hours with a full bladder.

We're still on the high, despite the traffic setback. She is a trooper, a super hard worker; everyone who works with her is impressed with her flexibility, her positive attitude and her ability to hold it together. I am so proud of her and I foresee great things for her in 2009...

Sunday, December 21, 2008

Mentioning Miscellaneous Minor Miracles

We've had a mild shift in the direction of the wind of late and I thought that I'd acknowledge it. My realization that something was working in our favor started out this week as everything going apparently wrong. We had some pretty bad weather in NJ on Thursday into Friday and then again Saturday into Sunday. My mother-in-law had gone home early on Thursday night to avoid the mayhem and was planning to come back Sunday morning to take the three older kids to a local presentation of the Nutcracker ballet.

In the meantime, we have been battling for literally years over our on again off again refrigerator, which of late had been off again (to colorize this thing, it should have come in yellow). Long story short they had ordered a part to 'fix' it and the part was no where on the planet and the fridge had developed new symptoms and was just plain not 'fridging' our food. On a tip from a soon to be sainted customer service rep, we got a number to call to request a replacement fridge. Just like that, we are given the green light for a brandy new fridge to replace our 5 year old, been through a move and the wringer falling apart one. The delivery date: Sunday.

Now the two stories collide as we have a 12:30 to 3 delivery time and a 2:00 appointment with Godfather Grosseimeyer and the Rat King. We're tearing apart the kitchen to make way for the new fridge, when we get the call from mom that she's running late. She was supposed to have been taking the kids to the Nutcracker; now I was going to have to step in as the understudy. Off come the sweats, on go the dress casuals, and off we fly, 15 minutes short of arriving at the 2:00 deadline. Fortunately, the Sugar Plum Fairy was dancing 15 minutes late and we arrive at our seats just as the lights go down; we even had a spare minute to allow Aly to hit the restrooms.

Meanwhile, back at the ranch, Linda looks out the window and sees the truck pull up minutes after we leave, still no mom. She turns to see a stark naked Gracie and a bottomless Livie. She scrambles to make them Rated G just as they ring the doorbell. Mom arrives just a minute or two after they do and they can tag team the dynamic duo while the gentlemen install the brand new beauty.

I have to admit, I got the better end of the deal today. I got out of the house, saw a great ballet, had a blast goofing with the kids to and from the show, and did a command performance of the Angry German Kid Drives a Car on the way home. It was amazing to me that not only we got there on time, but we also got along under pressure. Linda had a more stressful time, but when we got home, that fridge was beautifully cooling down in it's new home.

We've had other near great things happen to us in this magical month of December. My brother-in-law, near-fresh out of Columbia nursing, got a job in a hospital near him. We got our first check for a grant to cover off on Livie's OT therapy. Last but certainly not least, Livie, over the past few days has taken to INDEPENDENTLY taking herself into the bathroom and taking care of business. We have stopped her bathroom schedule and are keeping closer eye on her cues. Now if we could only get her to stop playing in the tub and the shower, we'd be in like Flynn.

If I were a God fearin' man, I'd see a buncha miracles that I'd be thanking Him for all the great things He has moved for me. But, they're all not really miracles, we've worked tirelessly at all these things from pushing for the fridge, to the potty to my BIL's incessant search for a job, it's just the season that allows you to appreciate these things when they happen at this time. Although I think, along with a wry sense of humor, God also has an impeccable sense of timing!

I've had this song running through my head as a result of all this good fortune, it's a non-sequitor except for the chorus:

Something Goes Right: Paul Simon

You've got the cool water

When the fever runs high
You've got the look of love
lightin your eyes
And I was in crazy motion
Til you calmed me down
It took a little time
But you calmed me down

When something goes wrong
I'm the first to admit it
I'm the first to admit it
But the last one to know
when something goes right
Well it's likely to lose me
It's apt to confuse me
It's such an unusual sight
I can't get used to something so right
Something so right

They've got a wall in China
It's a thousand miles long
To keep out the foreigners
They made it strong
I've got a wall around me
You can't even see
It took a little time
To get to me


Some people never say the words
I love you
It's not their style to be so bold
Some people never say those words
I love you
But like a child they're longing to be told


Saturday, December 20, 2008

Christmas in Africa

If you have not heard the 12 Days of Christmas as done by the A Capella choir Straight No Chaser, it kinda dovetails into my wonderful experience on Thursday:

These guys' story and CD are great by the way, but back to the story. The last part of their '12 days' sings of Christmas in Africa, which is just what the girls' school did. Some (probably now hated) person at the school suggested "Hey, why don't we have the kids put on Broadway's The Lion King!" I just can't imagine the coordination with every class in the school with the decorations; the learning of the parts for all the principles in that play; to the costumes (we all had to buy specific color sweatsuits and they did the rest). Logistically, these people could have moved armies in Iraq and had time left over for lunch!

They had two shows because all parents were showing up. We had 'official' playbills upon entering and a hand-made Pride Rock on the stage. When we had all 50 or so kids with their paras on stage, some signing, some singing, one or two crying, a few waving to their parents, all the swinging and stimming and smiling; I understood the beauty of the chaos theory.

There was lots of great singing from the kids; some wonderful miscues (one child insisted "NO LAUGHING, No Clapping, only cheering...HEY, DID YOU HEAR WHAT I SAID?"). My kids were just extras and were paraded out only a few times, but I didn't really care. I was happy for all the kids, upset for a couple who were having difficulty, and proud of those who stood up, spoke and sang and made it a wonderful show. Our principal said at the beginning: "Most schools like ours won't even try to put on shows like this, but we like to see our kids and our parents surprised and proud at what we can accomplish." I don't know about anyone else in that auditorium, but I was proud of the whole lot of them!

Sunday, December 14, 2008

What Can Happen While You're in the Bathroom

We had a long day today. We had a doctor's appointment in Lon Gisland today and we had to leave at 1:15 PM. It seemed like the powers were trying to keep us from going, so much was happening during the hour before we left, I just had to flesh it out.

Of course, all this happened while Linda was 'prepping' to leave (translation: showering and actually putting ON makeup). She goes in at 12:15, My Mother in Law, Aly and I are conversing when Aly's future 'mommy ear' detects a scream from downstairs that is not the 'hey give me that you IDIOT!' scream. 3 seconds later, Dillan is coming upstairs crying, holding his eyes. "I was playing with this rubber thing, stretching it across my feet and it hit MY EYES!" At first, the holiday wanted my to prompt the Christmas Story line 'you'll shoot your eye out', but by his tone and wailing, I could tell this was NOT the time. The rubber portion had shot across his eyes and we were not sure whether his corneas were damaged.

We spent tense minutes as Dillan slowly was able to open his left eye, and then eventually his right eye without too much pain. There were several moments there that my MIL and I exchanged those "warm up the car, we're going to the emergency room" looks, but they did not materialize. I sat on the couch next to him and felt a sharp pain go into the ball of one of my feet. Normally I would have "OUCHED" and suppressed a curse word, but under the circumstances, I though better of it. I lifted my foot and pulled a centimeter long, needle sharp wire from my feet, almost like a push pin thing. Luckily, it hit one of my callouses and it did not cause any major damage; minor bleeding and I got it out.

OK, eyes getting better, metal shards removed from body parts. I go walking in the hallway and Jason says "Gracie says she has to go POOPIE!" Quick Robin! To the BATroom! Grace's been giving me a hard time in the bathroom lately, but this time, she went right away, no poops, but she did pee. Almost the second she's out, Livie's at my hand dragging me down the hall. I figure, she want to know where mommy is, but she stops at the bathroom. This is VERY unusual for her; I take her in and put her on the potty. BAM! Major incident averted. She is hailed as the goddess of the throne that she has just shown me.

1:05...Linda emerges from the bathroom with no idea that the world had turned upside-down, sideways, major feats had been achieved, major potential medical procedures averted. We ran a little late, of course, but we got there on time; we just HAD to get her up to speed on what had happened why she had whiled away her time primping!

Monday, December 08, 2008

Another Writer in the Family

Well, every time I seem to post about Livie and her accomplishments, Gracie decides she has to get in the game. I caught her in the kitchen copying the words "LOVE SOMEONE WITH AUTISM" off of a magnet on the microwave. Before, I could show what she had done, she had erased the Magnadoodle (fantastic gift for any young kid by the way). She then proceeded to write the bottom word 'AUTISM' again as you see here in the picture. It was ironic, sad and fantastic all in one weird emotion as my wife, mother in law and I exchanged glances.
She then walked into the other room and was quiet for a while, then she asked Linda "Spell daddy". D-A-D-D-Y, then more silence. I walked in, she had gone off to do other things. I said "Who wrote this?" I did not recognize the handwriting as one of the other kids'. "That's got to be Gracie, she just asked me how to spell daddy" Linda said. To translate, L to R/T to B: JAYJAY, DADDY, LIVIE, GRACE, AUTISM
Honestly, her writing does not phase me anymore; she has been writing and spelling out loud for several months now. She will spell out almost everything she sees, and sounds many of the words out. She can spell Mississippi and she only gets a letter or two wrong on antidisestablishmentarianism (just kidding on the second one!). This time was special for us because she had did this all from memory and had written so many things on one board. Like Livies words, I could not pass this up with just a cheer and a clap.
In our world, it's very hard to not be clinical about what our girls do and just enjoy the moment. I just think, if we can only get her behaviors and her socialization better, and work on her scripting and echolalia, she could be AMAZING in kindergarten. No matter what though, she is going to be amazing in school, we just have to fight so that she has the chance to be amazing.

Sunday, December 07, 2008

Lighten up...

I gave in and agreed to setting up outside lights this weekend. We haven't done outside xmas lights since we got here 3 years ago. Now I remember why. Finding them in the attic was one thing, finding the bad bulbs, bad strings, bad polarized plugs that don't play nice with the other strings, all those wonderful things I experienced again, boy did I miss them.

I also brought down Buck and Jane Doe, our 10 year old animatronic lighted dear deer. That is, if you consider a 10 inch movement of the head up and down or side to side to have any similarity to the It's a Small World ride. Problem is that these originally came with eight pieces of metal that allowed you to spike them to the ground. Nooo, they are long gone to that great lost area where the other sock and TV remotes go. So we're left with balancing wire deer on thin legs in 30 mile per hour winds. The other problem was that Buck's front two legs do not light, leading my oldest Aly to comment that he now looks like a kangaroo. Of course that gets my mind racing on how I could write the next Rudolf the Red Nose reindeer song for a Kangaroo (Ken the Kristmas Kangaroo was my fist choice). But alas, those ever-industrious Aussies already appear to have one. I am a sucker for real bad Christmas songs:
So six light sets later, with the reds out on one of the chaser sets, half the lights out on two of our 'net' light sets, we're done. 1/2 hour later, we look out to find Jane laying on the ground with her head off her body and the neck still slowly writhing to the animatronic beat. We get fixed and bring Gracie out, the REAL reason we set all this up. She is fascinated with the lights on the house next door and we wanted her to have something to ooo and aahhh over at our house. She ran from house to house babbling with delight, but the chasers sans the red were her favorite. Twinkle Lights, Twinkle Lights! We are finally officially in the Christmas spirit!

Friday, December 05, 2008


I just HAVE to share my Livie's new found voice with everyone. She's been in speech therapy for a couple of years now. They have worked on her oral muscles, motor planning and making sounds. The therapist has always said that she would get the relevant sounds out of her; a K-K for cookie and cup; a P-P for 'up' and quite a few others. But Lin and I were never really privy to her vocalizations; it was probably just situational that she was expected to make sounds in speech, so she did. We would only rarely hear 'pop outs' or relevant speech when she really wasn't thinking about it. We'd get the mama and dada and an occasional coo-key; but it was never consistent.

Yesterday, Linda drags me into the bathroom with her and Liv and tells me that Livie has something to show me. "Go ahead, say it". She come out with, what I can tell, is a very deliberately oral motor planned "UUUU---PPP". Of course the room explodes with our praise and she does it one more time "UUUPP". It was a request to get up from the seat! YESSSSS...

Later that evening, I took her into my bedroom and Aly was sitting working on the computer. "Hi Livie, how ya doing, Aly's in here too". "AAAALLLEE" comes out of her mouth as clear as day. Shock and a congratulatory eruption comes out from us and she says it once again "AAAALEE". We got ourselves a trend here!

Now today, she's leaving speech and waves goodbye and comes out with a "BU-BYYE" at the same time. She was so proud of herself, she jumped up and down with everyone giving her the WO-wo-WO-Wo!

Sorry all you looking for why it happened; no changes in diet, no new protocols, supplements changes in therapies; just good old fashioned hard work from a little girl who is such a trooper working the cognitive, muscular and breathing into vocal replies. Congrats Liv!

Just to cover all her other methods of communication, she really has dropped off using PECS, her teacher at school is into signing and she's picked up on a half dozen new signs. I am even pushing a new sign into the mix: 'gum' . She is TOTALLY into gum and those are the things that will motivate; she will now pinch her cheek several times to request a piece.

No matter what form it is, I can't wait until I can have a two way conversation with her. I know she has so much to tell me and sometimes I can tell that she's frustrated that she can't get it out...but she will...