Daily Bits

It's so strange to me when I have stories to share and yet the words won't come. I've done a lot of spiraling up and down this week. January seems to have that effect on many people, especially special needs parents. December is filled with the usual anticipation of holidays and season changes that we all gear up for. The tension of riding them out, wondering how our kids will handle them. Then the transition back into school and routine, which is often bumpy. We hold ourselves so tightly for so long, and then January releases the valve and we're depleted. That's not necessarily a bad thing. It creates room for something new. Makes us take a breath, think, rest.

Emma was home sick all week with what was eventually diagnosed as strep throat. Poor girl was nauseous and fatigued for two days. I was so concerned with flu-like symptoms that I completely ignored the fact that she had mentioned a sore throat. Turns out it was BRIGHT red with BIG white bumps on it, obvious strep. Whoops! Score one for the inattentive mom!

The Transformer costume with fancy noises and voice altering capabilities was purchased for $60 by Santa. The other, with a thin polyester jumpsuit and sharp plastic mask, in the clearance aisle at Target for $3. Guess which one is played in daily?

With little boy sweetness, the other night, George looked me in the eyes and said, "Mom, you're my first friend." Awwwwww. (I'm choosing to ignore the fact that this was probably scripted from some video. He used it appropriately and it melted my heart, that's good enough for me.)

Emma and I went ice skating the other night to make up for the class she missed earlier in the week. After her one and only fall, she started to brush the ice off her pants and then stopped. She declared, "I'm going to leave it so everyone can see that I fall sometimes, too." Obviously, we need to check into the possibility of late entries for the 2010 Winter Olympics. I love watching her confidence bloom in this new activity!

This long holiday weekend, we've done something fun every day (ice skating, kids-night-in club for George, swimming, visits to a favorite reptile store, library, etc.). Slowly, my kids are helping me recharge, showing me how easy it is to find delight, and opening my eyes to the little details that bring life to this new year.

"Normal day, let me be aware of the treasure you are. Let me learn from you, love you, bless you before you depart. Let me not pass you by in quest of some rare and perfect tomorrow. Let me hold you while I may, for it may not always be so." ~Mary Jean Iron

Memories

I spent some of the weekend creating a book out of the blog I maintained before this one. It covered most of 2005 and into 2006. Because it was in an outdated format, I had to copy and paste every entry into the book software (Blurb, if you're looking to do the same; it will "slurp" most current blog formats automatically). I finished the 2005 entries late last night and it was an interesting walk down memory lane. Some of it was silly, there weren't nearly enough photos, and, frankly, there wasn't much of any substance. But it helped me remember a few things, got me to look at photos I haven't thought of in years, and made me laugh at my optimism. (Not that I'm a pessimist, but that early blog was like reading a yearlong Christmas newsletter; not exactly real life.)

2005 was the year that George began speech therapy through the school district (we had to wait until he was two before they would work with him). It was also the year before he received his formal Autism diagnosis. I say "formal" because I had known from the time he was 18 months old that we were probably headed somewhere in that general direction, but it took until October of '06 to get into the specialist's office. (In Virginia, where we lived at the time, you had to have a medical diagnosis to receive special education services.) I read this piece of an entry from September 2005 and laaauuuggghhhheeedddd:

George had some testing with the school district speech therapist on Wednesday. He didn't make much noise, but apparently enough for her to make a determination. What is that determination, you ask? I have no idea. She has to "report her findings" to the school board officials, they will mail me a letter asking me to call them to schedule another meeting. At which time George and I will again report to the therapist (but this time the board official in charge of this kind of thing will be there), and only then will I get to know what she thinks and where we'll go from there. Fun! Couldn't possibly let the worried parents know anything right away. Oh no, it makes much more sense to go through three other steps first. I guess we're well into the system now and have to play by their rules.

If I knew then what I know now, oh lordy. The paperwork, the back and forth between dozens of "officials", the rules, the system! We are so lucky to live where we do now, the available services are excellent, but every year there are so many hoops to jump through. Just today I spent several hours filling out insurance paperwork that required me to sift through George's medical file and make copies of his IEP. The shear amount of paper involved is staggering. And there are at least three people from whom I need signatures to verify the diagnosis he's had for more than three years.

But we do it. We get the signatures, fill out the forms, call dozens of officials. And eventually our once non-verbal children look at us and tell us we look goofy. It's totally worth it.

Saturday Scrapping

Journaling:
When your brother began playing Ice Hockey, you were beyond jealous. Prior to that, neither of you had ever been on the ice, and you (as big sister) ought to have been the first to try it! As soon as we could, we signed you up for ice skating (you prefer the term “figure skating”) lessons. And you love them! You spent almost two hours on the ice before you had your first fall. I don’t know how I ended up with two kids with such good balance, but I’m so glad you have found an activity you enjoy so much! I’m stocking up on hats & gloves because it looks like I’ll be spending a lot of time at the ice rink from now on! January 5, 2010

Really? With the Whining? And the Screaming?

Whenever our schedule changes, or a vacation goes on a bit too long, or we return to routine, or the moon is in the seventh house, or the cat walks through the room, or he wants to laugh in the face of my praise over his accomplishments....George regresses a bit.

Now, academically, he's doing great, retained his skills through the vacation, teachers are pleased, I'm still happy with all the words and full sentences I'm seeing and hearing. But behaviorally, George is, shall we say, a bit of a challenge these days. I don't think he's doing much worse than any of the Kindergarteners this week, as they all adjust once again to early mornings and structure. But when George doesn't want to do something he gets loud.

George, time to get dressed.
NO, Mom, NO! Just keep playing! Aaaarrrrrggghhh!!!!
Here, George, the toy you were looking for.
No, Mom, not Thomas, I want Transformer! Aaaarrrrrgggghhhh!!!!
Wait your turn in line, Buddy.
EEAaahhhhhiiiiiiaaarrrggghhhh!!!
Do you want an Oreo?
NO, Mom, no....YES, MOM, I WANT OREO! Aaaarrrrrgggghhhh!!!!

See? So. Much. Fun. He has a whine that seems to be the soundtrack to his days lately, a constant undercurrent that has the ability to shave my patience to bits in a matter of minutes. Even when it's not directed at something in particular, the sound is ongoing. I think it's like keeping a car engine warm. He maintains the sound so when he needs it to ramp up, he doesn't have to exert much effort.

So this week? I'm working on Maintaining Patience, on Not Locking My Child In His Room, on teaching him to Use His Words, on Not Locking Myself In My Room. (And, apparently, on Using Multiple Commas in Every Sentence.)

Next week: Teaching Children to Mix Mommy's Favorite Drinks. (Just kidding!) (Really!) (Maybe.)

Words

The other day, I sat down at the computer and found an open Word document with the following list:

1234567891020100
George
Daddy
Emma
momy
car
stop
go
AJ (teacher's name, Hi AJ!)
camp
on
off
tomas
daddy
tran (train)
cat
dog

For the last few years, I've been watching the slightly older, autistic sons of friends, marveling over their accomplishments and wondering where, academically, George would fit in as he grew. I'd see pictures of Simon reading, and think, "Will George read?" I'd grade papers from Emma's classmate, Sam, and think, "Will George write?" I'd have conversations with Garrett and think, "Will we be able to have real conversations with George someday?"

Intellectually, I knew that someday, yes. Of course he would do all those things; in his own time, in his own way.

One of the aspects of having a kid with Autism that I love most (yes, there are many things that are lovable about Autism) is found within George's developmental delays. I think it's fairly common that the natural developments of any second child tend to be overlooked. The first child's every move, change, growth is noticed and documented. The next child? Not so much.

But then a child with Autism comes along and each move, change, and growth is late. And because it's late, it's noticed when it does show up.

The other day I realized that in addition to the "yes/no" answers I was getting to my questions, George would follow those up with an explanation. No big deal to some, but to us? Huge. When I saw him go into the kitchen the other day, I asked him if he was getting a snack. As expected, he answered, "yes" and I went back to what I was doing. But then, a moment later, I heard him say, "I'm just getting a granola bar, Mom." Aside from the fact that he was getting a snack without asking first, I was thrilled, and it made me realize that he's been giving me explanations like this for a couple of months now. For any other six year old, that might be no big deal, but for a kid who often needs "scripts" to use in communication, this spontaneous speech makes me forgive him for his snack-sneaking!

Earlier today he asked me, "What are you doing [with] Daddy's tools, Mom?" "Hanging a mirror," I replied. "Why are you hanging a mirror, Mom?" "To replace the one that broke, Buddy." "Why did [the] mirror broke, Mom?" This type of never-ending back and forth may sound familiar to parents of toddlers, but it's new for us. Conversation, real conversation.

George isn't reading yet, though there are some words he recognizes if he takes the time to focus on them. Instead, he's writing. That list was his. He had opened the Word program himself, set the font to size 24 as he prefers, and written a list of words. All by himself. And his favorite game during this school break is sounding out words, letter by letter. He's fascinated by that process. It's only a matter of time before he realizes that he can both break the words apart and then put them back together. Reading. It's coming; in his own way, in his own time.

Talking to Thomas

Journaling:
One of the biggest surprises this Christmas was the huge Thomas the Train lawn ornament waiting for you in Gramma & Papa’s living room. You were in awe and spent most of the day sitting with him, showing him your presents, and "talking to Thomas". Later in the weekend, we'd find him angled in towards the TV or wherever you were playing!