Adjusting

Once again, Jackson is adjusting to the change in routine school brings. He didn't sleep well the past couple of nights, so we resorted to Benedryl. He's sleeping soundly.

Tonight, he did a cut & glue homework paper matching lower to upper case letters. I let him do it independently to see how he would do, and he did VERY well! I noticed one wrong and before I said anything, I watched him move it to the right spot!!!

Sometimes I wonder if we really are giving him things that are too easy for him.....

The Dentist

Jackson went to the dentist today...no cavities!!!!!

But going to the dentist for Jax is so much more than that sentence above implies. When we first took Jackson to the dentist, he wouldn't even sit in the chair. We had to take him back to the exam room kicking and screaming. [We almost didn't return to this wonderful dentist b/c of the evil looks I felt that we got from some of the staff--come on, I'm thinking , this kid is autistic and you work for a pediatric dentist who specializes in difficult kids like mine. I digress].

We took baby steps toward where we are today. Jack actually goes to the dentist every 3 months. He no longer needs Dan to sit in the chair and hold him. He willingly sits down and opens his mouth (though he screams still in protest).

Two years ago, at the beginning of second grade, he missed the first day of school because he had to have dental surgery. This sounds much worse than it is. A nt kid would have just gone to the dentist, but Jackson had to get up at 5 am and go to the hospital to fill 4 cavities, pull a tooth, have his teeth cleaned and his permanent teeth sealed. I truly hope we don't have to do that again any time soon.

He now has all his permanent teeth. He won't lose anymore teeth, which we're all relieved about because every time he lost a tooth we wondered where it was, did he swallow it and how long was it loose? (He had a tendency to pull out a loose tooth sooner than most kids; he couldn't stand that loose sensation I guess).

Well, I'm quite proud of the fact that he now willingly walks into the building and acts semi-appropriately. Honest truth? Sometimes I'd like to scream my head off when they're scraping the plaque off my teeth too!!! ;)

Music

I have to wonder how many other autistic kids are totally motivated by music. Jackson is very into music. Today in church Grandpa sang with his music group Chords. Which meant he also played his trombone and bass guitar. Jackson was very well behaved in church. He didn't need any re-directing or distraction activity to keep him quiet. In fact, he was quite engaged with the program.



One of his favorite things to do lately is to play his miniature electric guitar (like Daddy's) and watch himself in the mirror while he sings.





There he is 'jamming'. Now if I could just figure out a way to channel this interest....

Is and Isn't

Jackson is:
gentle
innocent
funny
loving
happy
sometimes silly
resilient

Jackson isn't:
mean
talkative
athletic
artistic
mature

Just thinking of the things Jackson is and isn't. When I limit myself to one word to describe the things he isn't it just "feels" better. I sometimes get hung up on what he isn't...

Again...

he surprises me with his resilience. Today he road the bus to the sitter's after school. I expected him to be anxious about this. Prepared to leave a meeting early, but again, he rose to the occasion. He fell into step at the sitter's and was calm and content until I picked him up.

What a wonderful surprise! I need moments like this to reflect back on during his regressions.

Resilience

Resilience, Jackson's store of it amazes me. Then again, all kids are relatively resilient aren't they? There are times I forget what 'normal' is and compare my son against too strong (or sometimes too weak)a standard. For all I know, this could be something all parents struggle with.

School is really work for him, some days he'd just rather stay in bed (today being one of them) and dad feels like the big meanie for putting him on the bus fussy. Somehow, he is able to put it together and manage his day. What I wouldn't give to be a fly on the wall--just to see how he really does. Then again, that might be painful. (Maybe I need a dose of resilience myself).

The Shiner

Dan and I decided (what were we thinking?) to paint several areas of the house today. Which left the boys to basically more or less fend for themselves. For the most part, things were going well, I even let Cal 'help' me in the toy room. [We had to BAN Jackson from helping because we had to paint in the kitchen because he decided to channel Da Vinci.]

At any rate, the boys are in the bedroom watching Ice Age on TV and giggling and being silly. I hear Cal say, "Jack, Stop It!" then a few minutes later Jackson is crying his eyes out. I run back to see what happened. Jack is crying and Cal has a poker face. I asked "what happened?They both respond at the same time: Cal-"he fell" Jack-"My eye". After a quick investigation I learned that Cal had punched Jackson in the eye!

Well, Cal has lost game boy privileges for a week...but poor Jackson; it hurt his feelings and really hurt him too. Jack would never hurt Cal intentionally. He just doesn't have it in him.

On another note, this morning laying in bed Cal asked me, "Mom, when Jackson is a grown up will he still have autism?"

Triumph

School today was a huge success. He spent a lot of time with his peers, acting completely appropriate, attending, engaged. What a relief for me. Stealing a phrase from a good friend, his 'autism angel' must have been with him today.

He has a new job, he'll be collecting the morning lunch counts from all classes and taking them to the office. I thrilled with this responsibility for him.

More than anything, I'm pleased that he was relaxed and comfortable.

Chalk one up for the good guys.

School

starts tomorrow. I can't believe he's starting fourth grade!

I desperately want him to be content and comfortable. I'm doing my best to see that he is, but it's such an adjustment. We'll just have to wait and see how things go and give him time to adjust to the change.

My one wish for fourth grade? I want him to learn to read, really read. He so enjoys books, but he's not yet looking at print...

Deep within him, I know lurks a brilliant little man. He's definitely intelligent. It's in there, it's just a matter of bring it to the surface...

Ah, the late night ramblings of a tired school teacher....

From behind the looking glass

More than ever, I feel like I am an outsider looking in.

Cal's normal life is a reminder of how abnormal Jackson's is and that's just such a bitter pill to swallow.

Jackson is included in so many ways: boy scouts, soccer, basketball camp, gymnastics. People know him that we don't know. And yet; I'm reminded again that we're just outsiders looking in on life for everyone else. We live inside a glass shell, able to see out, but not interact in the world around us. It's depressing.

Now the world around us is pressing in. Cal is in that world around us, functioning. He's laughing, returning conversations with others. He's got real friendships. I'm so happy for him, and even more heartbroken for the missing pieces in Jackson's life....

Quagmire

Isn't a quagmire a difficult situation with no acceptable option?

Yeah, that's what autism brings to our life so often. Our current situation regards making a choice for Jackson. If it were Callahan (my NT son) there would be a clear acceptable option. Unfortunately, that is not the case. Whichever way we go, there will be a negative consequence. So, I suck it up and hope for the best, prepare for the worst.

I've got this momma instinct that's telling me one thing and this reasonable, rational part of me reminding me this can work out....

a quagmire....

Meaningful Language

Jackson has some meaningful language but even more repetitive phrases which are 'pat' answers. It's more than a little frustrating.

Today, he dropped a shoe to his dinosaur and I told him. He said, "I'll get it"

Wow.

That 3 word sentence was so much more meaningful to me than some of his common 6 or 8 word sentences. I just wish I could get more of this kind of language from him.

So often, he'll repeat a phrase and repeat until we validate his statement. It's beyond frustrating and means so little.

For today, I'm happy with this sentence.

Prayers

Jackson has always prayed with a sweet heart. Today in church during prayer time his prayer was just so touching. It always brings tears to my eyes. He prays for children he hasn't been in school with since pre-school. He prays for teachers and today he prayed for his Aunt Lauralee. I truly think he just has a sense about him regarding who is in need of prayer. It's the most touching thing to hear him pray....

Road Trip

Went to visit my sister in Evansville and stopped in at Holiday World. Jackson did pretty well overall on the long drive. He got a bit silly on the way home, but I think that's probably normal for any kid.

I was really proud of him at Holiday World. He went on the log ride...didn't really want to, but he did. He didn't like it much and wouldn't do it again, but he did go without an issue. Callahan loved it and wanted to go again right away...

We also rode the raging river ride. It's one of the big circular seat type ride which generally drenches you. Jackson was especially nervous about this one. We all went on it and kept reminding him there were, "no hills". He seemed to enjoy it and willingly got on it a second time, so I feel like it was progress. He was definitely more flexible and willing to try 'some' new things. He LOVED the wave pool and rode the huge swings squealing with delight the whole time.

Honestly, I'm just grateful we're able to get out and do things like this. I know it's not easy for him to try new things and I'm glad he's willing to risk it.

Cabin Fever

Jackson is really having trouble with the 'no predictable schedule' situation that the end of summer school has created. He wanders a lot, has difficulty concentrating and is generally mischievous.

Having said that, we're noting some cool 'progress':

• after completing an Elmo in Space puzzle earlier in the day he later put his misfit toys under a clear plastic tote and started the litany: "Spotted elephant is an astronaut, Snowman is an astronaut, Hermie is an astronaut"
• while playing the game boy and observing his brother on starfall.com: "It's Jackson's turn now", and "Can I have a turn Cal?"
• while at Magic Wand [we rode bikes to get ice cream as a family] "let's go to the park"

So, I guess he's still 'in there', but he's struggling...I think.....

Camouflage

P & P were with us for our Fun Friday adventure. Today we travelled to Muncie and visited the Children's Museum there. We've been there a handful of times before and Jackson especially enjoys the Garfield exhibits.

During our visit I observed two other obviously autistic boys. One younger than Jax exploring the water table with squeals and even got his head wet! His (mother?) by his side doing hand over hand with him, talking/prompting quietly. The other boy a teen with a 'shadow' trying to manipulate the human 'ant hill' which kids are able to crawl through.

I was struck at how obviously disabled these two boys were. Then, I looked back at my precious blue eyed boy and wondered....

We're over at the ant hill now. The four kids are crawling up down and around the structure. The teen boy becomes stuck in the ant hill; the shadow struggling to help him out, apologizing. "No big deal, my son is autistic" I let her know. "He is??" she responds and seems surprised...

Wow...just wow. But, then again, yeah. This is how it goes. Watch my little man (growing ever so taller by the day) and he seems so normal; especially in a place he's comfortable and familiar. But then, really observe him and you'll see; no you'll hear. Conversation? One sided. Interaction with others? Non-existent.

No, my dear boy isn't splashing his head into the water fountain or crying out from being stuck in the ant hill he's too large to play in. Instead, he's camouflaged by appearance. That and his generally quiet presence...

Wait, she must have missed his jumping (stimming, excited) as he watched the toy train clack along the track.

Do I love him any less? Do I give him any more? What did I do right? What did I miss and do wrong? Will he be like this as a teen? Was he ever like that before?

Benedryl is my friend

After a few nights of being up at all hours for showers, games, TV and general mess making I resorted to Benedryl. [Our ped. recommended this for the nights when Jackson's out of whack/off schedule not sleeping]. Jackson slept all night last night. He woke up once and wanted to shower; I told him no, sleep and he went right back to sleep! Yes!

I know he'll be happier when school starts and we enter a routine again. For now, though, benedryl is my friend....sweet dreams!

The Great Unkown

The hardest part for me, maybe what I struggle most with coming to terms with is the never ending question of the future. Before autism, I remember thinking of the world in front of my boy. The possibilities seemed endless. Maybe, they still are endless, but much harder for me to list. I can think of many, many things he cannot do. :(

So, I struggle, wondering what the future holds. Wondering, ultimately, what his limitations will be? Constantly fearing, his skills will peak, or worse be lost.

The unknown, didn't Poe or someone say it's the greatest fear there is? So there it is....