Tuesday, September 16, 2014

Smiling Overcomes Uncertainty

We got up later than usual. Put it this way, I found myself brushing Sebastian's teeth & left Willow in her pajamas to take Judah to class (we get out of the van for that one - I usually dress her). Kid pjs are so adorable though, those should be shared. :)

Willow went with me to get my blood work done. Scott thought this wasn't even an option (to have her go with me). But honestly, I barely even mentioned it to him. I didn't see any problem with it at all. When we got there the lab receptionist acted as if people do that all of the time. Apparently it's not uncommon for 2 year olds to sit and watch as a stranger in a huge blue coat pierces their mom's arm with a needle. They get to see the blood get sucked up through the tiny tube connected to the needle sticking out of their mom's arm.. while the stranger in the big, blue coat smiles at them, telling them how adorable they are, promising them stickers for witnessing this disturbing event. I can't imagine what a 2 year old would be thinking in this situation. Anyway, Willow watched SpongeBob on my phone for the entire 4 minutes it took to get my blood drawn. She wasn't even facing the needle action.

Judah also got a blood draw today. He kicked & screamed (he's a kid), but I think talking to him about things he likes while it was going on really helped because he answered me a couple of times when I asked him things. They always look at me funny there when I do that with him - you'd think most parents would be telling their kids happy things to distract them when their kid is being stuck with a needle having blood sucked out of their little body.

We did the Oregon City drive today to see Dr. Green. Judah sees him 4 times a year. Last time he told me that he thought Judah stood a chance of making it - basically he indicated that he believed Judah would likely be able to speak, socialize & function in the world at some point. Today, 3 months later with a very different Judah, Dr. Green told us, "I believe he will be able to function in society - have a job, live on his own, etc." To let us know more clearly what he was saying, he followed that thought with, "I think he has a significant chance of beating this diagnosis."

I asked Dr. Green if Judah would need to take these supplements for the rest of his life (the ones that are helping). He said he didn't know. He said nobody knows. Autism has only been treated for 20 years at this point. Adults with autism weren't treated in the beginning - they were seen as having other problems & were treated in other ways. "Autism" didn't exist then. The full course of an autistic person being treated from birth to old age hasn't happened yet. And beyond that, every single person with that diagnosis is different, sometimes hugely different (Judah often doesn't fit the stereotypical characteristics of his diagnosis). Every person with autism needs separate treatment, what ails one differs from what ails the next. Judah got thrown into a world with no sure answers. A world absolutely no one understands. When he progresses we are ecstatic. But we have to learn to live with not knowing what got him there. We have to learn to live with not knowing how to help him. Nobody knows how to help him - that has to become okay with you at some point. His future is a mystery - we learn to become okay with that as well. We've learned to live with hope more than having grounded answers to questions. We have to learn to live with uncertainty. We have fireworks of appreciation when good things happen. And we are beginning to appreciate things in life more & enjoy life more while worrying less about things that aren't nearly as important as being happy. You hope for the best every second of every day when you have autism in your life.

We talked about Judah's aggression - I had rated that as being worse, solely because when he is frustrated he runs to hit baby sister (on a daily basis now). It just occurred to me at this very second that this only happens when the aide is taking care of him. Dr. Green thought that since Judah is becoming more aware & seeing that he does have the power to get his wants & needs met he is likely becoming more frustrated because now he KNOWS he can have that item, he KNOWS he is asking in a way that is understood, but we still aren't letting him have it. In the past he was likely just giving up when he didn't get what he was trying to ask for, because he felt misunderstood. So the habit of hitting baby sister has returned, he only hits her though. I told him that he then hugs her, typically we don't even have to tell him anymore. Dr. Green thought that Judah may just be hugging out of habit & not truly feeling remorse. I told him the splash pad story - when Judah collided with a little girl on accident & how concerned he was, stopping all play until he was able to hug & kiss the little girl, waiting patiently on her dad to put her down, and even looking at her closely (making eye contact) before he left her to make sure she looked okay, haha. Doc got teary- eyed.

Dr. Green told us a story about a kid he had been treating for10 years. This kid's mom was working hard to help her son progress. At 13 this kid has a stroke. They don't know why. They find that he has a hole in his brain, but apparently this did not cause the stroke. From that day on the kid has been fine, he had to learn to walk & talk again (which can happen with stroke), but he's not an autistic little boy anymore - he is typical. I can't even imagine - the quintessence of entering a new world, one you've dreamed every day of seeing. Living in that world had probably been the definition of impossibility to that little boy. I can't imagine.

So we're doing blood work to test different levels - zinc, copper, cholesterol. Also a saliva test to measure toxic levels.

I just went in to tell the boys goodnight. After I gave Judah hugs & kisses I started to walk away and he reaches his arms out & says, "Get back here!" ha. He tripped when we were walking outside of school today. I asked him if he was okay and he says, "yah". He did that the other day too. Any form of "yes" is incredibly rare to hear him saying!! He answered me with, "I don't know" when I asked him what he was doing when he was climbing into the front seat of the van, ha.

Sebastian & Willow had Gramma/Papa time while Scott, Judah & I did the Oregon City trip. Sebastian had one-on-one with Gramma to work on Spanish, reading & writing. They'll be doing that twice a week during the week now.

Willow is back to being Willow! haha. She may have toasty brown skin but her moods & behavior tell me she is all mine, completely mine, haha. She copies so much of what she says & hears.. we all seem to be huge sources of her behaviors & language. I don't remember that happening with the other 2 nearly as much. I'm pretty sure we could make her whoever we want her to be... haha, kidding!!

Judah had 2 bowel movements today (one while waiting to do his blood work at dr. office in OR City). He pottied when he got home from school - did well with that today.

Judah missed his coconut butter, 2nd half of bethanecol, iron up, will do eye drops tomorrow, had one Beta (need to start doing more or feeding him beet root). Missed oxy-mag, fish oil, powder b-6 (do every few days - need to do this now),

We did skin rash med. 

No comments:

Post a Comment